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AGS Ethics Committee, Physician-Assisted Suicide and Voluntary Active Euthanasia. Journal of American Geriatrics Society, May 1995, 43(5):579-580.
p.579 Definition of Terms.
Physician-Assisted Suicide: When a physician provides either equipment or medication, or informs the patient of the most efficacious use of already available means, for the sole purpose of assisting the patient to end his or her own life.
Voluntary Active Euthanasia: When, at the request of the patient, a physician administers a medication or treatment, the sole intent of which is to end the patient's life.
Alemayehu E, Mooloy D, Guyatt G, Singer J et al. Variability in Physicians' Decisions on Caring for Chronically Ill Elderly Patients: An International Study. Canadian Medical Association Journal 1991, 144(9):1133-1138.
p.1133. Treatment of incompetent elderly patients with life-threatening illness varies widely within and between countries. Uniform standards should be developed on the basis of societal values and be communicated to physicians.
p.1138 Age, correlating highly with number of years in practice, was associated with less aggressive therapy. Family physicians were more likely than specialists to choose more conservative therapy.
p.1138 Although the wishes of the patient and his daughter represented a fourth factor that strongly influenced the decisions an appreciable proportion of physicians ignored them. This was true even when the wishes were expressed in an explicit written directive. Overall about 40% of the physicians provided a level of care different from what had been requested. In six of the seven countries more than 10% chose treatment options that differed significantly from the wishes.
Alpers A, Bernard L, Physician-Assisted Suicide in Oregon. Journal of American Medical Association, August 9, 1995, 274(6):483-487
p.485 Patients may have misconceptions about what is likely to happen. Many members of the public assume that taking a lethal dose of medication is certain to lead to a peaceful death. Physicians need to help patients appreciate that the attempt may fail, that complications such as aspiration pneumonia may occur, and that reflex actions may lead patients to struggle against plastic bags placed over their heads. Patients and their families should also be cautioned about telephoning 911 if the suicide attempt fails.
Annas G. The Health Care Proxy and the Living Will. New England Journal of Medicine 1991; 324(17): 1210-1213.
p.1210 The term "living will" was coined by Luis Kutner in 1969 to describe a document in which a competent adult sets forth directions regarding medical treatment in the event of his or her future incapacitation. The document is a will in the sense that it spells out the person's directions. It is "living" because it takes effect before death.
p.1211 The Cruzan case itself, which involved facts essentially identical to those in Quinlan, gave impetus to the concept of a health care proxy, just as the Quinlan case had previously increased interest in the living will.
p.1211 Although new laws are not necessary in any state (because of existing laws regarding the assignment of a durable power of attorney), the current trend in the United States is for states to enact additional proxy laws that specifically deal with health care.
p.1211 Two of the best-written proxy laws have recently become effective in New York (in January 1991) and Massachusetts (in December 1990).
p.1211 Hospitals can impede the process of making good decisions, however, if they concentrate on the paperwork rather than on the way in which decisions are made. Some Massachusetts attorneys, for example, have already drafted a 13-page, single-spaced proxy form that is all but unintelligible to non-lawyers.
p.1212 The most useful form for both patients and providers is a simple one-page document that sets forth all necessary information in easily comprehensible language.
p.1212 Perhaps out of concern for efficiency, some commentators have advocated combining an organ-donor form with the form designating a health care proxy. This is a serious error for at least two reasons.
p.1213 Designating a health care agent gives us all the opportunity to confront our mortality and to determine who among our friends and relatives we want to make treatment decisions on our behalf when we are unable to make them ourselves.
Annas G. When Procedures Limit Rights: From Quinlan to Conroy. Hastings Center Report 1985 Apr: 24-26.
p.24 The New Jersey Supreme Court has concluded that there is no analytical difference between terminating artificial feeding and discontinuing a mechanical ventilator, an action permitted in the 1976 Karen Ann Quinlan case.
p.26 ...the "New Jersey approach" of declaring broad-ranging substantive rights, and then attempting procedurally to restrict their application to very narrow categories of patients, creates a "Catch 22" effect that fails to promote the autonomy of once-competent patients.
Ashby M. A proposed advance directive format for South Australia. Australian Health Law Bulletin 1994; 2(7):89-92.
Ashton G. (1994), The Elderly Client Handbook - The Law Society's Guide to Acting for Older People. London: The Law Society.
(includes overview of the law and simple living will document by Denzil Lush at p.214).
Back, Anthony L; Wallace, Jeffrey I; et al. Physician-Assisted Suicide and Euthanasia in Washington State: Patient requests and Physician Responses. Journal of the American Medical Association (1996) 275(12):919-925,p.920: More than a quarter (26%) of physicians had been asked at least once in the past for physician-assisted suicide or euthanasia.
p.923: patients who requested physician-assisted suicide or euthanasia were more often male.
p.924: neither severe pain nor dyspnea was a common patient concern, suggesting that intolerable physical symptoms are not the reason most patients request physician-assisted suicide or euthanasia.
p.924: it is unclear why patients with heart disease who are expected to live for less than 6 months appear to request physician-assisted death less often than patients with cancer or AIDS with the same life expectancy.
p.924: Our study indicates that in Washington, 24% of patient requests for physician-assisted suicide or euthanasia are ultimately granted; in the Netherlands, less than a third of requests are ultimately granted....[T]hese empirical comparisons suggest that patients in both places make these requests regardless of legal constraints on physicians or medical care delivery systems.
p.925: patient requests for physician-assisted death are not rare. patient concerns underlying these requests are often nonphysical. Physicians do not consult each other often about these cases.
Barr A, Biggar J, Dalgleish A, Stevens H (1994) Living Wills, in: Drafting Wills in Scotland. Edinburgh: Butterworths.
(contains, at pp.97-100, the Living Will document distributed by VESS from Jan 1995)
Battin M, The Least Worse Death. 1994 New York Oxford, Oxford University Press.
p. 102. "Although philosophers do not agree on whether moral agents have positive duties of beneficence, including duties to those in pain, members of the medical world are not reticent about asserting them. "Relief of pain is the least disputed and most universal of the moral obligations of the physician", writes one doctor. "Few things a doctor does are more important than relieving pain", says another. [Refs. E D Pellegrino, "The clinical ethics of pain management in the terminally ill", Hospital Formulary 17 (Nov 1982): 1495-96; Marcia Angell, "The Quality of Mercy", New England Journal of Medicine, 306 (Jan 1982): 98-99.] These are not simply assertions that the physician "do no harm" as the Hippocratic Oath is traditionally interpreted, but assertions of a positive obligation. It might be argued that the physician's duty of mercy derives from a special contractual or fiduciary relationship with the patient, but I think this is an error: rather, the duty of medical mercy is generally binding on all moral agents, and it is only by virtue of their more frequent exposure to pain and their specialised training in its treatment that this duty falls more heavily on physicians and nurse than on others."
Note: p 128-129. "It is sometimes argued that physician assistance in a patient's suicide would violate the Hippocratic Oath. It is true that the Oath, in its original form, does contain an explicit injunction that the physician shall not give a lethal potion to a patient who requests it, nor make a suggestion to that effect. (To do so was apparently common Greek medical practice at the time.) But the Oath in its original form also contains explicit prohibitions of the physicians accepting fees for teaching medicine, and of performing surgery - even on gall stones. These latter prohibitions are not retained in modern reformulations of the Oath, and I see no reason why the provision against giving lethal potions to patients who request it should be. What is central to the Oath and cannot be deleted without altering its essential character is the requirement that the physician shall come "for the benefit of the sick". Under the argument advanced here, physician's assistance in patient suicide may indeed be for the benefit of the patient. What the Oath would continue to prohibit is physician assistance in the suicide for the physician's own gain or to serve other institutional or societal ends."
p. 55. "Thus, just one thing is clear: until the issue of the moral status of altruism itself is resolved, we ought not to uncritically perpetuate policies and practices in medical decision making that preclude its possibility altogether. To do so is to deprive the patient of the possibility of retaining his or her status as a moral agent, and to make him or her a "patient" in not only a medical but a moral sense as well. Among the indignities that medicine is capable of inflicting, this may be among the most profound."
p. 229 "On the other hand, stealing, intimidation, and outright aggression may be "natural" behaviour, and yet are severely discouraged." "Arguments against suicide that hold that it is "unnatural" because it runs counter to ordinary human inclinations are inadequate as moral arguments against suicide; such arguments move from "is" to "ought" arguing that because human beings do generally attempt to remain alive rather than kill themselves, they ought always to do so."
p. 230. "The natural law argument does not make clear what obligations are imposed upon individuals whose capacities to function have been seriously diminished by disease or disability; these, however, are often situations in which suicide, or prearranged euthanasia, may be considered."
[Chap.13, Assisting in Suicide: 17 Questions physicians and mental health professionals should ask]
1. Is the person making a request for help? For example, when somebody wants assistance in suicide is it in fact cloaking some other aspect or some other solution which may be found?
2. Why is the person consulting a physician or mental health professional? Has the consultation been sought because the person has certain expectations from the professionals?
3. What has kept the person from attempting or committing suicide so far? Is it fear of consequences, or given advanced illness or physical limitations they simply cannot obtain the means of causing death? Is the time for suicide not yet right? Or is the person seeking some sort of approval?
4. Is the request for help in suicide a request for someone else to decide?
5. How stable is the request? Has this been part of a long term decision, or a short term response as a result of some traumatic event e.g.. diagnosis, death of a friend or relative etc.? Also, when the person thinks of suicide, does someone else come to mind? Does the person change their mind about suicide a lot?
6. Is the request consistent with a person's basic values? If there is a discrepancy, can we justify the discrepancy?
7. How far in the future would the suicide take place? Is it intended to solve a future problem, the eventual onset of intractable pain or mental deterioration, or to put an end to problems currently occurring? The triggering event may be difficult for not only the person to justify, but also for others to justify.
8. Are the medical facts cited in the request accurate?
9. How accurate are the other non medical facts cited in the request, for example, that others who assist in an attempt may be subject to criminal penalties, life insurance coverage etc.?
10. Is the suicide plan financially motivated? This is a very American point where she is asking whether it is intended to avoid catastrophic medical expenses?
11. Has the person considered the effect of his or her suicide on other persons, also the stigma associated with suicide? (x ref the Oregon family clause here and any commentary on stigma)
12. Does the person fear becoming a burden? Is he or she being manipulated by family members etc. or has there been frank and open communication between the person and their loved ones?
13. What cultural influences are shaping the person's choice? e.g.. are religious beliefs, prejudices especially against the handicapped and aged contributing to a feeling of worthlessness?
14. Are the person's affairs in order?
15. Has the person picked a method of committing suicide? Does the person know what kinds of injuries are likely to result if the attempt is not fatal? Does the person want to stick to this one method only? If the person hasn't chosen one method does this make them ambivalent about committing suicide at all or is it simply lack of information?
16. Would the person be willing to tell others about his or her suicide plans?
17. Does the person see suicide as the only way out?
Battin M. Euthanasia: The Way We Do It, The Way They Do It. Journal of Pain and Symptom Management 1991, 6(5):298-305. [compares Netherlands, Germany and USA]
Battin M. The Least Worse Death. Hastings Center Report 1983 Apr:13-16. safeguards often render natural-death requests and directives cumbersome to execute...
all the law protects is the refusal of medical procedures.
The physician is caught in between: he recognizes his patient's right to die peacefully, naturally, and with whatever dignity is possible, but foresees the unfortunate results that may come about when the patient exercises his right as the law permits. Which mode of death claims the patient depends in part on circumstance and in part on the physician's response to conditions that occur.
In the face of inevitable death, the physician becomes strategist, the devisor of plans for how to meet death most favourably. He does so, of course, at the request of the patient, or, if the patient is not competent, the patient's guardian or next of kin. A scenario in which natural death is accomplished by the patient's selective refusal of treatment has one major advantage over active euthanasia and assisted suicide: refusal of treatment is clearly permitted and protected by law. Unfortunately, however, most patients do not have the specialized medical knowledge to use this self-protective mechanism intelligently. Few are aware that some kinds of refusal of treatment will better serve their desires for a "natural death" than others. And few patients realize that refusal of treatment can be selective.
patients may be unable to distinguish therapeutic from palliative procedures.
most patients do not have enough medical knowledge to foresee the consequences of refusing treatment on a selective basis; it is this that the physician must supply.
though it is crucial in making a genuinely informed decision, the patient's right to information about the risks and outcomes of alternative kinds of refusal has not yet been recognized.
Consider the bowel cancer patient with widespread metastases and a very poor prognosis who...refuses surgery to reduce or bypass the tumor. How exactly will he die? ... obstruction of the intestinal tract will occur, the bowel wall will perforate, the abdomen will become distended, there will be intractable vomiting (perhaps with a fecal character to the emesis), and the tumor will erode into adjacent areas, causing increased pain, hemorrhage, and sepsis. Narcotic sedation and companion drugs may be partially effective in controlling pain, nausea, and vomiting, but this patient will NOT get the kind of death he thought he bargained for. Yet he was willing to shorten his life, to use the single legally-protected mechanism - refusal of treatment - to achieve that "natural" death
Battin M. Assisted Suicide: Can We Learn Anything from Germany? Hastings Center Report March-April 1992; 44-51.
p.44 In a Boston Globe/Harvard survey... 54 percent of a national sample of 1,311 adults over age eighteen said that if they had an illness with no hope of recovery and were suffering a great deal of physical pain, they would or probably would consider asking their doctor to administer lethal drugs or a lethal injection; and 53 percent said that in the same circumstances they would or probably would ask their doctor to prescribe a lethal drug that they could decide to take later on.
p.44 Because the U.S. is so sensitive (as it should be) to the risks of abuse, and because permitting assisted suicide would require a less dramatic change in the law, I think the United States will come to accept assisted suicide in the relatively near future, officially as well as tacitly, but is likely to resist legalizing active euthanasia for a longer time.
p.45 Assisting suicide is not a crime in Germany... provided that the person about to commit suicide is tatherrschaftsfahig, that is, capable of exercising control over his or her actions, and also that he or she acts out of freiverantwortliche Wille, or freely responsible choice.
p.45-46 ...assisted suicide is not illegal but there may be a duty to rescue a suicide in progress. Like U.S. law, German law imposes an obligation to rescue upon specific parties standing in certain professional or personal relationships to other persons; this is the basis of the physician's legal duty to rescue his or her patient. Thus, as one widely prevalent interpretation of the legal situation holds, although the physician is not prohibited from giving a lethal drug to a patient, once that patient has taken the drug and becomes unconscious, the physician incurs a duty to resuscitate him or her. (PARA) These provisions of German law - all currently highly controversial - have the effect of curtailing the role of German physicians in suicide, and tend to insulate the patient from physician aid.
p.46 ...although it apparently would not be illegal for physicians to assist in the initiation of their patients' suicides, as a matter of practice they do not do so.
p.47 Freitod (literally "free death" or "voluntary death") is a positive term, free from connotations of either moral wrongdoing or pathology...
p.49 ...because the German practice of assisted suicide, as shaped both by law and by linguistic expectation, tends to minimize the role of the physician, it tends as well to minimize the opportunity for whatever evaluation, counseling, and psychiatric consultation the physician might provide.
p.50 the German tends to respect Freitod, however difficult it may be to say exactly what differentiates this phenomenon from the previous forms of self-caused death, and tends to regard Freitod as a matter of right - that is, to assume that it ought not to be interfered with and that one always has the right to this choice.
p.50 The distinction between suicide as a moral wrong or psychological aberration and as a religiously or altruistically motivated choice is readily marked off in English, but the distinction between suicide as a moral wrong or psychological aberration and an autonomous choice based in personal ideals and values is not.
Battin M. Voluntary Euthanasia and the Risks of Abuse: Can We Learn Anything from the Netherlands? Law Medicine & Health Care 1992; 20(1-2):133-143.
p.136. "Not all family life is harmonious, and underlying pathology can often be exacerbated by the stresses of a family member's terminal illness brings. "All right, Granny, it's time to go" is a message we can imagine being conveyed in a variety of ways, exhibiting an entire range from the faintest suggestion to outright coercion.
Baume P, O'Malley E, Bauman A. Professed religious affiliation and the practice of euthanasia. Journal of Medical Ethics 1995; 21: 49-54
p.49 Attitudes towards active voluntary euthanasia (AVE) and physician-assisted suicide (PAS) among 1,238 doctors on the medical register of New South Wales varied significantly with self-identified religious affiliation.
p.52 Of all medical practitioners who had been asked to do so, more than one quarter acknowledged that they had taken steps to hasten death.
Beauchamp T., Childress J. (1994) Principles of Biomedical Ethics 4th Edition. Oxford: OUP.
(slippery slope analyses: see p.229)
p.10 "Similarly, the judgement that an act is morally acceptable does not imply that the law should permit it. For example, the thesis that active euthanasia is morally justified if patients face uncontrollable pain and suffering and request death is consistent with the thesis that the government should legally prohibit active euthanasia because it would not be possible to control abuses if it were legalized. We are not here defending particular moral judgements about the justifiability of such acts. We are maintaining only that the connections between moral action-guides and judgements about policy or law or legal enforcement are complicated and that a judgement about the morality of acts does not entail a particular judgement about law and policy. Factors such as the symbolic value of the law, the costs of a program and its enforcement, and the demands of competing programs must also be considered."
p. 120. "The word autonomy, derived from the Greek autos ("self") and nomos ("rule", "Governance", or "law"), was first used to refer to the self-rule or self-governance of independent Hellenic city-states. Autonomy has since been extended to individuals and has acquired meanings as diverse as self governance, liberty rights, privacy, individual choice, freedom of the will, causing one's behaviour and being one's own person."
p. 121. "Virtually all theories of autonomy agree that two conditions are essential: 1. liberty (independence from controlling influences) and 2. agency (capacity for intentional action)."
p. 125. "Mill's position requires both noninterference with and an active strengthening of autonomous expression, whereas Kant entails a moral imperative of respectful treatment of persons as ends rather merely as means. In the final analysis, however, these two profoundly different philosophies both provide support for the principal of respect for autonomy."
p. 145. "Legal, regulatory, philosophical, medical and psychological literatures tend to favour the following elements as the analytical components of informed consent: 1. competence, 2. disclosure, 3. understanding, 4. voluntariness, and 5. consent. These elements are then presented as the building blocks for a definition of informed consent."
p. 165. [They quote Eliot Freidson:] "It is my impression that clients are more often bullied than informed into consent, their resistance weakened in part by their desire for the general service if not the specific procedure, in part by the oppressive setting they find themselves in, and in part by the calculated intimidation, restriction of information, and covert threats of rejection by the professional staff itself."
p. 165. "Nevertheless, one can easily inflate the threat of control by manipulation beyond its significance in health care. We typically make decisions in a context of competing influences, such as personal desires, familial constraints, legal obligations, and institutional pressures."
p. 181. "Although we have justified the obligation to solicit decisions from patients by the principal of respect for autonomy, we have acknowledged that the principal's precise demands remain unsettled and open to interpretation and specification."
p. 189. "The principal of nonmaleficence asserts an obligation not to inflict harm intentionally. It has been closely associated in medical ethics with the maxim primum non nocere: "above all [or first] do no harm." This maxim is frequently invoked by health care professionals, yet its origins are obscure and its implications unclear. Often proclaimed the fundamental principal in the Hippocratic tradition of medical ethics, it is not found in the Hippocratic corpus, and a venerable statement sometimes confused with it - "at least, do no harm" - is a strained translation of a single Hippocratic passage. Nonetheless, an obligation of nonmaleficence and an obligation of beneficence are both expressed in the Hippocratic Oath: "I will use treatment to help the sick according to my ability and judgement, but I will never use it to injure or wrong them."
p. 200. "The customary or usual in medical practice can be relevant to a moral judgement, but it is not by itself sufficient or decisive. It is customary medical practice to treat a disease by a specific means, but whether this treatment should be repeated for a particular patient depends on the patient's wishes and condition as a whole, not alone on what is customary. For example, treating pneumonia with antibiotics is usual, but it is morally optional for a patient who is irreversibly and imminently dying from cancer or aids. Ethical judgement is not reducible to professional custom, consensus, traditional codes, or oaths, as indispensable as these are for some professional contexts."
p. 202. " ...the distinction between ordinary and extraordinary treatment is morally irrelevant and should be replaced by the distinction between optional and obligatory treatment, as determined by the balance of benefits and burdens to the patient."
p. 205. "For some patients the burdens of medically administered nutrition and hydration outweigh their benefits, and no-one should deprive them of the right to refuse treatment. The obligation to care for patients entails provision of treatments that are in accordance with their preferences and interests (within the limits set by just allocation policies), not the provision of treatments because of what they symbolise in the larger society."
p. 213. "Writings in biomedical ethics that discuss futility often focus on the patient's or surrogate's right to refuse futile treatment. However, circumstances have increasingly appeared in which the question is whether the physician may or should refuse to provide some treatment. The fact that a treatment is futile is often said to change the position's moral relationship to patients or surrogates. The physician is not required to provide such treatment and sometimes is not required to discuss the treatment. These circumstances commonly involve incompetent persons, especially patients in a persistent vegetative state (PVS), where physicians or hospital policies impose decisions to forego life-support on patients or surrogates. Increasingly hospitals are adopting policies explicitly aimed to dying therapies that are judged futile by physicians, especially after the therapy has been tried for a reasonable period of time."
p. 214. "Few decisions are more momentous than those to withhold or withdraw a medical procedure that sustains life. But in some cases it is unjustified for surrogates and clinicians to begin or to continue therapy knowing that it will produce a greater balance of pain and suffering for a patient incapable of choosing for or against such therapy."
p. 220. "Killing represents a family of ideas whose central condition is direct causation of another's death, whereas allowing to die represents another family of ideas whose central condition is intentional avoidance of causal intervention so that a disease or injury causes a natural death."
p. 220. "Both killing by omission and killing by commission can be intentional."
p. 222. "Some persons use the term killing as a normative term of maleficence, parallel to "unjustified homicide or murder". Justified acts involving the deaths of patients, therefore, logically cannot be instances of killing. They can only be cases of allowing to die."
p. 223. "In the attempt to protect health care professionals from charges of killing, value judgements about what is (morally and legally) permissable often control our factual judgements about the cause of death."
p.224 [They quote Dan Brock: "Death and Dying", in Medical Ethics, ed. Robert M. Veatch (Boston: Jones and Bartlett Publishers 1989), p. 345.:] "The judgement of a person who competently decides to commit suicide is essentially that "my expected future life, under the best conditions possible for me, is so bad that I judge it to be worse than no further continued life at all." This seems to be in essence exactly the same judgement that some persons who decide to forego life-sustaining treatment make. The refusal of life-sustaining treatment is their means of ending life; they intend to end their life because of its grim prospects. Their death now when they otherwise would not have died is self-inflicted, whether they take a lethal poison or disconnect a respirator."
p. 224. "We conclude that the distinction between killing (suicide, homicide, etc.) and letting die suffers from vagueness and confusion. It is conceptually impossible to classify many acts as instances of letting die without also classifying them as instances of killing. We have also seen that the language of killing is so confusing - causally, legally and morally - that we should avoid it in discussions of euthanasia and assistance in dying. It is often morally and conceptually more satisfactory to discuss these issues exclusively in the language of optional and obligatory treatments, dispensing altogether with killing and letting die."
p. 225. "Nothing about either killing or allowing to die entails judgements about actual wrongness or rightness, or about the beneficence or nonmaleficence of the action. Rightness and wrongness depend on the merit of the justification underlying the action, not on the type of action it is. Neither killing nor letting die, therefore, is per se wrongful, and in this regard they are to be distinguished from murder, which is per se wrongful. Both killing and letting die are prima facie wrong, but can be justified under some circumstances."
p. 225. "All instances of killing and letting die, then, must satisfy independent criteria, such as the balance of benefits over burdens to the patient, to determine their acceptability."
p. 226. "If competent patients have a legal and moral right to refuse treatment that involves health professionals in implementing their decision and bringing about their deaths, we have a reason to suppose we have a similar right to request the assistance of willing physicians to help them control the conditions under which they die."
p. 226. "Only a small percentage of patients face overwhelming pain and burdens because pain management and improvements in patients' environments have made circumstances at least bearable for most patients, and hospice environments have improved the care of the dying. The right to refuse nutrition and hydration also gives many patients the opportunity to control the time of their death. However, these facts do not provide a decisive reason for prohibiting increased physician assistance in dying. Some patients cannot be satisfactorily relieved, and in any event there are significant questions about autonomy rights for patients. If a right exists to stop a machine that sustains life, through an arrangement involving mutual agreement with a physician, why is there not the same right to stop the machine that is one's life by an arrangement with a physician?"
p. 228. "The phrase "assisted death," particularly "physician-assisted death," is now widely used, but it is ambiguous because many modes of assistance exist. Both assisted suicide and voluntary active euthanasia are instances of assistance in bringing about death. In assisted suicide, the final agent is the one whose death is brought about, and in voluntary active euthanasia the final agent is another party."
p.228 "We believe that sufficient moral reasons exist in some cases to justify mercy killing and assisted suicide, but these reasons are not necessarily sufficient to support revisions in either codes of ethics or public policies. In addressing whether we should retain or modify some current prohibitions, we therefore need to be clear about whether the topic of discussion is the moral justification of individual acts or the justification of institutional rules and public laws governing practices."
p.88: As long as principles allow room for discretionary and contextual judgement, the ethics of care need not dispense with principles. However, like many proponents of virtue theory, defenders of the ethics of care find principles often irrelevant, unproductive, ineffectual, or constrictive in the moral life. A defender of principle could say that principles of care, compassion, and kindness tutor our responses in caring, compassionate, and kind ways. But this claim seems hollow. Our moral experience suggests that our responses rely on our emotions, our capacity for sympathy, our sense of friendship, and our knowledge of how caring people behave."
p. 8. "Reasons other than incompleteness and lack of stated justification also support scepticism about the adequacy of professional codes in health care. From the time of Hippocrates, physicians have generated codes without scrutiny or acceptance by patients and the public. These codes have rarely appealed to more general ethical standards or to a source of moral authority beyond the traditions and judgements of physicians. In some cases, the special rules in codes for professionals seem to conflict with and even ride more general moral norms. The pursuit of professional norms in these circumstances may do more to protect the profession's interests than to introduce an impartial and comprehensive moral viewpoint. Other rules have traditionally been expressed in abstract formulations that dispense vague moral advice open to competing interpretations."
p. 230. "Rules in our moral code against actively causing the death of another person are not isolated fragments. They are threads in a fabric of rules that support respect for human life. The more threads we remove, the weaker the fabric becomes."
p. 231. "The ultimate success or failure of these slippery slope arguments depends on speculative predictions of a progressive erosion of moral restraints. If dire consequences will in fact flow from the legal legitimation of assisted suicide or voluntary active euthanasia, then the argument is cogent, and such practices are justifiably prohibited. But how good is the evidence that dire consequences will occur? Does the evidence indicate that we cannot maintain firm distinctions in public policies between patient-requested death and involuntary euthanasia? Scant evident supports any of the answers that have been given to these questions, so far as we can see."
p. 233. "One reason for a policy of exhausting all alternatives before allowing physicians to engage in active euthanasia is the precariousness of constructing a social or professional ethic on borderline situations and emergency cases. It is dangerous to generalise from emergencies, because hard cases may make bad social and professional ethics as well as bad law."
p. 234. "If it is morally permissible to unplug respirators and detach intravenous lines knowing that death will eventuate, the logic of our present situation is that we are struggling to preserve as many traditional restraints against killing as we can, consistent with taking a humane approach towards seriously suffering patients and respecting their rights."
p. 240. "In general we have thus far been able to respect the line between unjustifiable and justifiable passive euthanasia in medical practice, and we should similarly be able to hold the line between justified and unjustified assistance for suicide."
p. 262. "Rules of non-maleficence are negative prohibitions of action that must be obeyed impartially, and provide reasons for legal prohibitions of certain forms of conduct. By contrast, rules of beneficence present positive requirements of action, do not always need to be obeyed impartially, and rarely, if ever, provide reasons for legal punishment when one fails to abide by the rules."
p. 263. "However, and very importantly, from the fact that morally recommended actions are not strong enough to support legal sanctions, or to satisfy a requirement of impartiality, it does not follow that they are merely moral ideals and are not obligations in the moral life. Not only are various norms of beneficence obligations, but they can be sufficiently strong obligations that they override obligations of non-maleficence."
p. 270. "Traditionally, codes of medical ethics have inappropriately viewed physicians as independent, self-sufficient philanthropists whose beneficence is analogous to generous acts of giving. According to the Hippocratic Oath, for example, physicians' obligations to patients represent philanthropy and service, whereas their obligations to teachers represent debts incurred in becoming physicians. However, physicians and many other healthcare professionals are today deeply indebted to society (e.g. for education and privileges) and to patients, past and present (e.g. for research and "practice"). Because of this indebtedness, the medical profession's role of beneficent care of patients is misconstrued if modelled primarily on philanthropy, altruism and personal commitment."
p. 286. "Some Aids patients want to commit suicide rather than face the process of suffering and dying from their disease, but their medical condition also causes central nervous system complications such as delirium or dementia that may render them unable to make a substantially autonomous choice. While recognising the case for rational suicide by patients with Aids, one physician contends that from the clinical point of view, careful evaluations of suicide even in terminally ill patients, almost invariably reveal evidence that the suicide occurred as a manifestation of psychiatric disorder rather than rational choice."
p. 395. "Surprisingly, codes of medical ethics have traditionally ignored obligations and virtues of veracity. The Hippocratic Oath does not recommend veracity, not does the Declaration of Geneva of the World Medical Association. The principles of medical ethics of the American Medical Association PMEAMA (AMA) in effect from its origins until 1980 made no mention of an obligation or virtue of veracity, giving physicians unrestricted discretion about what to divulge to patients. In its 1980 revision, the AMA recommends simply and without elaboration that physicians "deal honestly with patients and colleagues." By contrast to this traditional disregard of veracity, virtues of candour and truthfulness are among the most widely praised character traits of health professionals in contemporary biomedical ethics."
p. 418. "Rules of confidentiality have long been common in codes of medical ethics. Requirements of confidentiality appear as early as Hippocratic Oath and continue in the Code of Ethics of the AMA."
p. 464. "In previous eras professional virtues were often integrated with professional obligations and ideals in codes of healthcare. Insisting that the medical profession's "prime objective" is to render service to humanity, an American Medical Association (AMA) code in effect from 1957 to 1980 urged the physician to be "upright" and "pure in character and .....diligent and conscientious in caring for the sick." It also endorsed the virtues that Hippocrates commended: modesty, sobriety, patience, promptness, and piety. However, in contrast to its first code in 1847, the AMA over the years has de-emphasised virtues in its codes. The references that remained in the 1957 version were perfunctory and marginal, and the 1980 version eliminated all traces of the virtues except for the admonition to "expose those physicians deficient in character or competence."
p. 466. "The virtue of compassion is a trait combining an attitude of active regard for another's welfare with an imaginative awareness and emotional response of deep sympathy, tenderness, and discomfort at the other person's (or animal's) misfortune or suffering."
p. 468. "The virtue of discernment rests on sensitive insight involving acute judgement and understanding, and it eventuates in decisive action."
p. 469. "Trust is a confident belief in, and reliance upon the ability and moral character of another person."
p. 470. "Some writers claim that the first or primary virtue is integrity, because it plays such a central role in healthcare ethics."
Bennahum D, Kimsma G, Spreeuwenberg C, et al. Been There: Physicians Speak for Themselves. Cambridge Quarterly of Healthcare Ethics 1993; 2:9-17.
(Case Histories: euthanasia, physician-assisted suicide)
Benrubi G. Euthanasia - The Need for Procedural Safeguards. New England Journal of Medicine 1992; 326(3): 197-199.
Benson J. Who is the Autonomous Man? Philosophy 1983, 58:5-17.
p.15 To be autonomous in one's thinking calls for intellectual skills, including the ability to judge when someone else knows better than oneself. But it calls for the ability to control the emotions that prevent those skills from being properly exercised. This is a complex matter. Courage and self-control enter into the forming of judgements as well as into acting upon them. That is one complication. A second is that certain emotions, e.g. fear or impatience, may prevent one from thinking clearly, or thinking at all; as, equally, intense emotions may prevent one from acting as judgement would dictate.
p.15-16 the fear of getting the wrong answer, of being thought unorthodox, may actually prevent a person from trusting himself to accept the truth of his own observations or the safety of his own inferences.
Biggs, Hazel. Decisions and Responsibilities at the End of Life: Euthanasia and Clinically Assisted Death. Medical Law International (1996)2:229-245.
p.229: In Britain approximately 70% of all deaths now occur in hospital rather than at home.
Biggs H, Diesfeld K. Assisted Suicide for People with Depression: An Advocate's Perspective. Medical Law International (1995) 2:23-37.
Bilimoria P. The Jaina Ethic of Voluntary Death. Bioethics 1992; 6(4):331-355.
Bix B. Physician Assisted SUicide and the United States Constitution. Modern Law Review 1995; 58(3):404-411.
(looks at Compassion in Dying v State of Washington)
p.406 There still remained the step of concluding that there was no constitutionally significant difference between refusing lifesaving medical treatment and assisted suicide, but this step did not seem to trouble the court, and it was quickly taken.
p.408 The District Court's quick and untroubled conclusion that there is no legally (constitutionally) significant difference between assisted suicide and the termination of medical treatment is also somewhat troubling. It not only goes against the grain of most judgements in the United States, England and elsewhere, it is also contrary to the historical underpinning of the 'right to die' judgements. These judgements were grounded in the common law position that unconsented-to medical treatment, like other unconsented-to touchings, is an assault or battery, and therefore patients have a presumptive right to refuse medical treatment. Whatever the merits of extending this doctrine to the extreme at which medical treatment can be refused in all circumstances, even when death is the likely result (as most United States courts have held), there is no means in logic to extend the right to refuse treatment to include the right to insist on harmful treatment, however little the difference may be in real-life consequences or however formalistic the distinction may seem to some.
Discussing Bland:
p.411 The implications of this judgement are not always recognised. As the Lords concluded that termination of treatment for such patients is in the patients' 'best interests' it would appear that termination of treatment is actually required and not merely permitted, for to do otherwise would be to act against the patients' 'best interests,' and would be a dereliction of the physician's legal and ethical duty.
Block S, Billings A. Patient Requests to Hasten Death: Evaluation and Management in Terminal Care. Arch Intern Med Sep 26 1994; 154: 2039- 2047
p.2039 When patients ask for death to be hastened, the following areas should be explored: the adequacy of symptom control; difficulties in the patient's relationships with family, friends and health workers; psychological disturbances, especially grief, depression, anxiety, organic mental disorders, and personality disorders; and the patient's personal orientation to the meaning of life and suffering.
p.2040 Patients, in fact, lack the technical knowledge to kill themselves quickly and comfortably. Botched suicides are feared because they may cause physical suffering, shame, humiliation, and a deepened sense of helplessness....Well-organized patients who carefully seek control over their dying are reluctant to embrace a casual, uncertain scheme to end their lives. The remarkable popularity of 'Final Exit', a manual for "self-deliverance," testifies to the widespread hunger for certainty about how to end one's life reliably and painlessly.
p.2040 Sixty percent to 90% of patients with cancer experience pain during the last year of life, while 10% to 20% encounter pain that is severe or difficult to control....More than 90% of cancer pain can be readily managed with simple drug therapies.
p.2040 In the Netherlands, an estimated 85% of patients withdraw their requests for euthanasia after receiving better symptom control.
p.2043 We have observed that physicians seem most willing to consider carrying out assisted suicide or euthanasia with patients whom they like or with whom they identify and with whom they have had intense and often long relationships.
p.2046 When patients receive comprehensive care, requests for hastened death are very rare. In the extraordinary circumstance when the patient's suffering cannot be ameliorated within the framework of his or her personal values, we believe that euthanasia and assisted suicide represent appropriate extensions of palliative care.
Booth M, Wallace P. Ventilating Patients for Organ Donation. In: Pace N & McLean S (eds.), Ethics and the Law in Intensive Care, OUP 1996. pp142-157.
p.154 A criticism of advance directives is that they may prohibit treatment that will be highly effective in a particular set of circumstances.
p.155 The Law Commission document concerning medical treatment and mental incapacity suggested that advance directives could be used to refuse treatment. The Commission was of the opinion that advance consent to treatment would not render that treatment lawful.
Boucher B J, Resuscitation not a panacea. British Medical Journal, 307, Letters, 31 June 1993:322.
I am struck by recent changes in approach. From having been a treatment for emergencies, such as after myocardial infarction, cardiopulmonary resuscitation is now used a panacea for death….In illness in which the diagnosis has been established and recovery cannot be assumed or expected…cardiac arrest is rarely an isolated acute event. It is more likely to be part of a progressive deterioration of natural illness. It is in this situation that doctors should, I believe, consider what hope of recovery there is before attempting cardiopulmonary resuscitation.
Brandt R. The Concept of a Moral Right and Its Function. Journal of Philosophy 1983; 80:29-45.
p.45 The history of rights movements shows that sympathy, even of enlightened people, moves the public conscience or at least custom and legal institutions only slowly when there is not supporting motivation from protests, nonviolent noncooperation, and sometimes violent action.
p.45 One might say that what is important is not the concept of rights, but that the oppressed are resentful and willing to protest, and do so without any feeling of shame - or even disapprove of those among the oppressed who do not speak out.
p.44-45 There is a third benefit of the language of rights, in that, if the explication is correct, it encourages the patients of right-infringing actions to feel resentment, to protest, to take a firm stand. To say "You have a right to this" seems to imply that these attitudes/behaviors are justified.
Bresnahan J. Medical Futility or the Denial of Death? Cambridge Quarterly of Healthcare Ethics (1993) 2:197-217.
(also discusses problems with proxies with religious beliefs)
p.215 ...answer with the fatal words, "Do everything," because they translate the question as a challenge to prove their love for and fidelity to this person.
Brett A. Limitations of Listing Specific Medical Interventions in Advance Directives. Journal of the American Medical Association 1991; 266(6): 825-828.
listing specific interventions in advance does not necessarily enhance self-determination or reduce uncertainty in the decision making.
In summary, the intervention-focussed directive runs the risk of promoting the selection or rejection of interventions because of their inherent characteristics rather than as appropriate means to the ends that the patient would have wanted.
The SUBSTITUTED JUDGEMENT standard asks the surrogate to make the decision that the patient would have made in the particular situation. This standard is limited by the fact that the surrogate must know something about the patient's preferences, as expressed when the patient's decision-making capacity was intact. On the other hand, the BEST INTERESTS standard is invoked when the patient's preferences were unknown. This standard, by definition, cannot apply to the patient's preferences. Instead it seeks the surrogate to choose the course of action that promotes the patient's interests according to a more impersonal standard (e.g. that which most reasonable persons would choose).
Patients, however, do not select or reject diagnostic interventions in a vacuum; they choose interventions according to the clinical context in which they find themselves.
At first glance, the detailed intervention-focused directive appears to conform to this contextual model. The person is given a clinical context (e.g. advanced irreversible dementia), and asked whether he or she would choose an intervention (e.g., use of antibiotics)...the patient may not want an antibiotic for a virulent pneumonia that will lead to rapid death but would prefer an antibiotic for an indolent pneumonia that is not expected to result in death but is causing an uncomfortable cough and chest pain.
(on multiple choice LWs)...this complexity does not guarantee improved decision making from a medical perspective, nor does it necessarily increase the certainty that decisions will conform to treatment goals from the patient's presumed perspective.
The simplest and most practical solution to the problem of advance directives is to encourage wider use of health care proxy directives...
Another innovation, exemplified in the VALUES HISTORY document, is to focus on those individual values that might be relevant to decisions about life-sustaining treatment.
British Medical Association. Euthanasia. London: BMA 1988.
p.67 "An active intervention by anybody to terminate another person's life should remain illegal. Neither doctors nor any other occupational group should be placed in a category which lessens their responsibility for their actions."
British Medical Association. Medical Ethics Today. London: BMA 1993.
p.161 ...the Association confirms its commitment to the fundamental right of patients to accept or reject, through advance directives, treatment options offered to them.
p.161 ...the BMA has very strongly recommended that any patients who wish to draft advance directives should ensure that they are well informed and do so with the benefit of medical advice.
p.162 The possibility of patients inadvertently misdirecting their doctors by an inadequate appreciation of the circumstances or of the evolution of new treatments led the Association to recommend strongly that advance directives should not be legally binding on doctors, but legal cases in 1992 and 1993 indicated that an anticipatory decision which is clearly established and applicable to the circumstances would be as legally binding as any current decision made by a competent patient. (Cases referred to are Re T [1992]4 All ER 649; and Airedale NHS Trust v Bland [1993]1 All ER 859.) p.162 The BMA suggests that patients who have drafted an advance directive carry a card indicating that fact as well as lodging a copy with their doctor.
p.162 The BMA recommends that any person making an advance directive updates it at regular intervals. Five years is suggested as an appropriate interval for patients to review their decisions.
p.163 It is not acceptable for doctors to give patients a tacit impression that an advance directive would be respected when the doctor, for reasons of conscience, has no intention of doing so.
p.164 The precise role, powers and title of a proxy decision-maker are not defined by either custom or law (even in Scotland where tutors dative may exercise this role). Pending clarification in law, the BMA believes that in cases where such a person has been nominated by the patient, the criterion to be followed in decision-making would be that of "substituted judgement," with the agent as a sympathetic interpreter of the patient's own values, rather than attempting to judge the patient's best interests.
p.177 In the BMA's view, liberalising the law on euthanasia would herald a serious and incalculable change in the ethics of medicine.
p.177 Effective management of pain and distress which has the side effect of curtailing life, is a necessary form of treatment.
p.177 The Association advises doctors to consider their own views and inform patients at the outset of any absolute objection they might have to the principle of limiting treatment at the patient's request.
p.177 When a decision is reached that it would not be in the best interests of the patient to give life prolonging treatments, the withholding of certain treatments is ethical, provided that caring attention to the patient's comfort is sustained.
p.177 Patients can only make valid choices on the basis of shared information about diagnoses, prognoses and realistic treatment options.
p.178 The BMA strongly supports the principles underpinning advance directives which represent the patient's settled wish regarding treatment choices when the patient is no longer able competently to express a view.
p.178 When preparing an advance directive patients are entitled to receive balanced counselling on the medical issues from their doctor. Discussion between patients and doctors of the specific terms of an advance declaration should be a continuing dialogue.
p.178 The BMA is not in favour of legislation on advance directives.
p.178 It is the responsibility of the patient to ensure that the existence of an advance directive is known to those who may be asked to comply with its provisions. Doctors, having been notified that an advance directive exists, should make all reasonable efforts to acquaint themselves with its contents.
p.178 It is strongly recommended that patients review their advance directives at regular intervals (at least once every five years).
p.178 The Association encourages doctors to raise the subject of advance directives in a sensitive manner with patients who may be thought likely to have an interest in the matter or who are anxious about the possible administration of unwanted treatments at a later stage.
(Appendices: Hippocratic Oath, Declaration of Geneva, International Code of Medical Ethics, Declaration of Helsinki, Declaration of Tokyo.)
Brock, Dan W. Good Decisionmaking for Incompetent Patients. Hastings Center Report November-December 1994, Special Supplement, p.S8-S11.
p.S10 if the instructions in the advance directive of a substantially demented patient with Alzheimer disease are in conflict with the current interests of that patient and the patient no longer remembers, much less identifies with, those instructions, one can question why they should be followed if doing so is against the interests of the patient now. If the cognitive changes in the patient are so profound as to call into question whether personal identity is maintained between the earlier and later selves, this challenge may seem even more worrisome.
Brody B. Special Ethical Issues in the Management of PVS Patients. Law Medicine & Health Care 1992. 20(1-2):104-115.
Brody H. Assisted Death - A Compassionate Response to a Medical Failure. New England Journal of Medicine 1992; 327(19): 1384-1388.
(philosophical)
p.1384 We cannot resolve these moral tensions by making one side of the tension disappear. Instead, we must learn to live with these tensions within a pluralistic society. This requires more reliance on negotiation, compromise, and practical reasoning, and less on abstract ethical theory.
p.1384 I argue here that an adjudication of assisted death might follow from viewing it as a compassionate response to one sort of medical failure, rather than as something to be prohibited outright or as something to be established as a standard policy.
p.1385 To take this case forward requires a case-orientated approach that identifies models of sound ethical practice and then asks whether new, controversial cases resemble those model cases in their most important moral features.
p.1386 The point of calling assisted death a response to a medical failure - the failure of medical interventions to arrange a good death - is to make the strong claim that assisting a death is an admission of incompetent medical practice until proved otherwise. This in turn indicates what sort of medical defense must be offered, in a particular case, to justify the practice.
p.1386 Identifying a psychopathology that interferes with competent decision making but that cannot itself be ameliorated by treatment may be diagnostically elegant but moves the patient no closer to a good death.
p.1387 If the defense of how one has managed a medical failure must occur on a case-by case basis, we cannot construct a statute that would list all possible justifications and restrictions in advance.
p.1387 A good death occurs as much as possible among caring and supportive people. If the law forces already suffering patients to die alone - for fear that seeking the supportive presence of others might implicate them in an illegal act - then the law undermines important social values of family and community.
Bowles, Lindsay. Nursing Times(1993) 89(31):32-34.
p.32: It appears that often the suicidal older patient receives more sympathy than their teenage equivalents. Older people rarely have to confront the 'attention-seeking' or 'manipulative' labels that are frequently applied to their more youthful counterparts....Perhaps some nurses support the idea that an older person's suicide attempt is a sane response to an insane or harsh reality.
p.33: Accepting a suicidal response as being logical in the circumstances may lead some nurses to sympathise with the suggestion that intervening in the suicide attempt of an older person could be an infringement of the individual's right to die.
p.33: If an older person bemoans his or her existence and complains about his or her life...it appears reasonable and in keeping with society's expectations, contributing to the legitimacy of a later suicide attempt and allowing the underlying depression to be missed.
Brooks A. Dignity and Cost-Effectiveness: A Rejection of the Utilitarian Approach to Death. Journal of Medical Ethics 1984; 10:148-151.
p.148 ...it is the failure to respect the intellectual integrity of other moral approaches and to understand the levels on which these differ fundamentally from the utilitarian approach that generates much of the heat in ethical controversy within the profession, whilst failing to illuminate the issues clearly.
Burg W. The Slippery-Slope Argument. Journal of Clinical Ethics 1992; 3(4):256-268.
Burgess J. The Great Slippery-Slope Argument. Journal of Medical Ethics 1993; 19:169-174.
p.169 Although there are slippery-slope arguments that are sound and convincing, typical formulations of the Nazi-invoking argument are found to be seriously deficient both in logical rigour and in the social history and psychology required as a scholarly underpinning.
p.173 ...those who offer the Great Argument seem to be entirely ignorant of the vast technical literature on slippery slopes and related phenomena now available.
Caine E. Self-Determined Death, the Physician, and Medical Priorities - Is There Time To Talk? Journal of the American Medical Association 1993; 270(7): 875-876.
Callahan D. Pursuing a Peaceful Death. Hastings Center Report, July-August 1993:33-38
p.33-34 What if medicine once and for all accepted death as a limit that cannot be overcome and used that limit as an indispensable focal point in thinking about illness and disease? The reality of death as a part of our biological life would be seen, not as a discordant note in the search for health and well-being, but as a foreseeable endpoint of its enterprise, and its pacification as a proper goal of medicine from the outset. What if the aim of scientific medicine was not an endless struggle against death, with the fight against disease as the token of that struggle, but helping humans best live a mortal, not immortal life?
p.34 Medicine's pursuit of health should be leavened by its need when health fails, as it must, to prepare the way for as peaceful a death as possible.
p.34 At present medicine takes as its task only the pursuit of health, or the preservation of a decent quality of life, with death as the accidental result of illnesses and diseases thought to be avoidable and contingent, even though in fact still fatal. Death is what happens when medicine fails.
p.34 In the task of allowing a peaceful death, brinkmanship would be repudiated from the outset. Active treatment to cure disease and stop death from coming would stop well short of its technical possibilities, at that point when a peaceful death could be most assured and best managed. The worry that a patient might die sooner than technologically necessary would be actively balanced by anxiety that a patient might die later than was compatible with a peaceful death.
p.35 The process of dying is deformed when, through overconfidence in our power to manage technology and to manage our own ambivalence toward death, we fail to take account of what an overzealous medicine can do.
p.37 A standard of futility compatible with the goal of avoiding an unnecessarily painful or extended death would be most valuable. The test of futility could be twofold: first, an inability to arrest more than momentarily (by a few days or weeks) a downward, deteriorating course; and second, the probability, should that kind of effort be made, that a peaceful death would become increasingly unlikely. At that point, curative medical treatment has indeed become futile and ought to be stopped. The standard is thus one that looks to the possibility of sustaining life in some decent fashion, but also and simultaneously to the choices necessary for enhancing the possibility of a peaceful death.
p.38 ...when a patient is incompetent and death on the way, family members should not be forced, through guilt or a confusion about killing and allowing to die, to believe that a termination of treatment is wrongful killing. It is not killing at all.
Campbell, Courtney S. On James F. Childress. Second Opinion 11, p.118-144.
p.129: Paternalism is morally interesting because it is based on appeal to the welfare, needs, or best interests of the patient. However, to the extent that it overrides patient choices and actions it is prima facie wrong, because acts on the patient's behalf are performed without or against hs or her behest. Under certain circumstances, ordinarily beneficent actions can be demeaning and insulting. In Childress's view, therefore, it is morally necessary for beneficent action to be constrained by the principle of respect for persons. The choices of patients who are competent and able to make autonomous decisions regarding disclosure or nondisclosure of information, refusal of lifesaving medical treatment, or personal life-style should be respected.
p.131: Childress holds that the principles of beneficence and respect for persons establish a presumption in favor of providing all medical treatments that prolong life, since prolonging life is typically considered in a patient's interest and also desired by the patient.[]However, under certain circumstances, this obligation may be overridden by either principle - for example, when competent patients refuse medical treatment....According to Childress, no medical treatment as such is obligatory; the underlying principles of beneficence and respect for persons can entail that provision of treatment is morally required, discretionary, or even wrong.
p.132: [W]hile the duty to prolong life may be justifiably infringed by decisions of either patients or proxies, the extent of infringement is limited by principles of both beneficence and respect. The refusal of medical treatment does not preclude expressions of compassion or acts of caring, such as moistening lips or massaging the body, by caregivers.
p.132: [T]he priority of patient interests should prevent external considerations, such as economic rationality and costs of treatment to others, from entering into, let alone controlling, the moral decision about terminating treatment.
Canadian Medical Association. Guidelines for the Diagnosis of Brain Death. Canadian Medical Association Journal 1987; 136:200A-200B.
Capron A. The Patient Self-Determination Act: A Cooperative Model for Implementation. Cambridge Quarterly of Healthcare Ethics 1992; 2:97-106.
(taskforce to implement PSDA in California, LW brochure design etc)
Capron A. Legal and Ethical Problems in Decisions for Death. Law, Medicine & Health Care 1986; 14(3-4):141-157.
We have gotten to the point, as Louis Lasagna has observed, when in the age of miracle drugs and surgical derring-do, no illness can be said to have a natural course. There is no such thing as a "natural" death.
Carmichael S. Business ethics: the new bottom line. London: Demos 1995.
p.28 The information paradox is that power within an organisation often resides with those who lack information, and information often resides with those who lack power. An ethical process can bring the two together.
p.35 For example, a recent US study by Johnson & Johnson showed that the top 30 ethical companies (and in the United States there are many companies which attempt to integrate ethics across the board) outperformed all other US companies by a significant factor.
Carpenter B. A Review and New Look Look at Ethical Suicide in Advanced Age. Gerontologist 1993; 33(3):359-365.
p.359 ...this essay constructs an argument for why the elderly have a unique claim to an ethical, unobstructed suicide.
Chambers C, Diamond J, Perkel R, Lasch L. Relationship of Advance Directives to Hospital Charges in a Medicare Population. Archives of Internal Medicine 1994; 154:541-547.
p.541 During discussions of advance directives, patients often opt to limit the extent of care they desire in certain situations. Although the most appropriate setting for developing advance directives is not clear, the results of this study imply that an enormous cost savings to society may be realized if such discussions take place, while, at the same time, autonomous patient choice will be respected.
p.541 End-of-life medical care not only may be expensive but in many cases may also be unwanted by patients.
Channell P, King R. Final Exit and the Risk of Suicide. Journal of the American Medical Association 1992; 267(22):3027 (letters).
Chappell P, King R. Final Exit and the Risk of Suicide. Journal of the American Medical Association (Letters) 1992, 267(22):3027. [recounts case of 2 14 year old girls]
p.3027 ...Final Exit may have an especially pernicious effect on adolescents, who, with their high rates of attempted and completed suicide, appear susceptible to imitative influences and cultural factors that glorify or stigmatize suicide.
Charlton R, Dovey S, Mizushima Y, Ford E. Attitudes to Death and Dying in the UK, New Zealand, and Japan. Journal of Palliative Care (1995) 11(1):42-47.
p.44 ...in comparison to other countries, seven times as many Japanese medical students considered that a prognosis of death should be concealed by the doctor.
p.45-46 In the UK about 59% of cancer patients die in hospital and 33% die at home.
p.46 The Japanese findings reflect an alternative health care system where 91.8% of cancer patients die in institutions and the role of caring for the dying is focused on the hospital. Most medical care in Japan is supported by a system of medical insurance in which palliative care is not sufficiently covered, but curative therapies are.
It is often assumed that people's greatest fears of dying concern pain and going into hospital. As can be seen from the results, this is the perception of the medical profession and not patients. The thing that worried people most in New Zealand and Japan was facing the unknown, whereas in the UK leaving the family was the major concern for dying people.
Choice in Dying, Inc. Refusal of Treatment Legislation - A State by State Compilation of Enacted and Model Statutes. New York: Choice in Dying 1991
In 1976, California became the first state to pass legislation that directly addressed decisionmaking on behalf of incompetent patients. The California Natural Death Act allowed individuals, in certain circumstances, to plan in advance for their treatment at the end of life.
On June 25th, 1990, the United States Supreme Court reached the constitutional question of the "right to die" in the landmark case of Nancy Cruzan. The Court recognized that every competent individual has a constitutional liberty right to be free of unwanted medical treatment. At the same time, however, the Court left the regulation of this right on behalf of incompetent patients in the hands of the states. As Justice O'Connor noted in her concurrence, "Today we decide only that one state's practice does not violate the constitution. The more challenging task of crafting appropriate procedures for safeguarding incompetents' liberty interests is entrusted to the "laboratory" of the states...in the first instance." QUOTING CRUZAN V. DIRECTOR, MISSOURI DEPARTMENT OF HEALTH, 497 U.S. 261,262(1990).
Following the Cruzan decision, the state legislative laboratories became increasingly active.
The amendments currently being considered generally expand patients' rights to make end-of-life treatment decisions in advance. In line with this trend is the enactment of the federal Patient Self-Determination Act as part of the 1990 Omnibus Budget and Reconciliation Act. The PDSA, which went into effect in December 1991, requires health care providers (primarily hospitals, nursing homes and home health agencies) to give patients information about their rights to make advance directives under state law; the substance of the law governing advance directives is left to the states. The PDSA also requires care providers to have written institutional policies regarding advance directives and to document whether or not a patient has executed one. QUOTED (PDSA): U.S.C.A. 1395cc & 1396a (West Supp. 1991)
Christakis N, Asch D. Biases in How Physicians Choose to Withdraw Life Support. Lancet 1993; 342:642-646.
p.642 Physicians do have preferences about the form of life support withdrawn. From most likely to least likely the order is: blood products, haemodialysis, intravenous vasopressors, total parenteral nutrition, antibiotics, mechanical ventilation, tube feedings, and intravenous fluids.
p.642 Four biases in decision making were also identified. Physicians prefer to withdraw forms of therapy supporting organs that failed for natural rather iatrogenic reasons, to withdraw recently instituted rather than longstanding interventions, to withdraw forms of therapy resulting in immediate death rather than delayed death, and to withdraw forms of therapy when confronted with diagnostic uncertainty.
p.642 Because these biases may have clinical, social, and ethical consequences counter to patient goals, and because they may affect the underlying decision whether to withdraw life support at all, they may represent impediments to rational and compassionate decision making on critical care.
p.645 Our research shows that physicians' preferences about the type of life support to withdraw are influenced by iatrogenic complications, duration of therapy with each form of life support, expected timing of death, and diagnostic uncertainty.
p.645 The decision biases that we have identified here may, in some circumstances, prolong the period of dying, increase the suffering of patients and their families, and waste resources.
p.645 Should, therefore, advance directives be drafted to specify how life support could be withdrawn? We think not: rather than seek such specificity physicians should focus on the underlying goals.
p.645 The primary goal in life support withdrawal ordinarily is to allow the patient to die as humanely as possible, and the decision should be made in the most ethically sensitive, logically rigorous, and clinically appropriate way possible. The biases we have identified may subvert this objective.
Ciesielski-Carlucci C. Physician Attitudes and Experiences with Assisted Suicide: Results of a Small Opinion Survey. Cambridge Quarterly of Healthcare Ethics 1993; 2:39-44.
p.42 Of the 45 physicians surveyed, 24 had a total of at least 50 requests, and 12 physicians assisted at least 25 persons in a suicide. In sum, of the 45 respondents, 56% had at least one request to assist in a suicide and 27% had actually assisted at least once in the past.
p.43 Respondents were more likely to assist (defined as prescribing or administering) a patient who is suffering from a terminal illness than one who is in chronic pain. This trend would remain the same if medically assisted suicide were made legal.
p.43 ...patients are asking for assistance and that Dr Kevorkian is not alone in granting requests.
Ciesielski-Carlucci C, Kimsma G. The Impact of Reporting Cases of Euthanasia in Holland: A patient and Family Perspective. Bioethics 1994; 8(2):151-158.
p.156 Part of the grieving process for the bereaved is recounting the story of the dying patient's last days, reliving the experience and sharing it with others. The bereaved are denied this opportunity to heal if the euthanasia is kept secret since they may not speak of it.
Cogen R, Patterson B, Chavin S et al. Surrogate Decision-Maker Preferences for Medical Care of Severely Demented Nursing Home Patients. Archives of Internal Medicine 1992; 152: 1885-1888.
(study of care for alzheimer patients etc.)
p.1887 Hospital level services including ICU stays and mechanical ventilation can reverse concurrent acute illnesses but have no beneficial effect on the underlying dementia and are frequently associated with superimposed delirium that exacerbate patient discomfort.
Cohen-Mansfield J, Rabinovich B, Lipson S, Fein A, Gerber B, Weisman S, Pawlson G. The Decision to Execute a Durable Power of Attorney for Health Care and Preferences Regarding the Utilization of Life-Sustaining Treatments in Nursing Home Residents. Archives of Internal Medicine 1991; 151:289-294.
p.289 Autonomous decision making for the nursing home resident is more often a topic of discussion among professionals than a realistic event.
p.289 Several crucial questions related to the use of advance directives were addressed in recent studies. Uhlmann et al showed that physicians and spouses inaccurately predicted patients' resuscitation preferences. Physicians, who had a median patient-physician relationship of 3.4 years, either significantly underestimated or overestimated patients' preferences for resuscitation in five of six illness scenarios. Spouses significantly overestimated patients' preferences in three of six illness scenarios. Similarly, Ouslander et al found little congruence between decisions made by frail elderly and their closest relative, social worker, nurse, and primary physician. In a study carried out by Zweibel and Cassel, patients and proxies responded to five vignettes about elderly persons who required life-sustaining treatment for survival (i.e., ventilation, resuscitation, chemotherapy, amputation, and tube feeding), but were unable to make health-care decisions. The proportion of instances that patients wanted the opposite of what their proxies predicted ranged from 24% for tube feeding to 50% for chemotherapy.
Conwell Y, Caine E. Rational Suicide and the Right to Die - Reality and Myth. New England Journal of Medicine 1991; 325(15): 1100-1103.
Crippen David, Practical aspects of life support withdrawal: a critical care physician's opinion. Clinical Intensive Care, 1991, 2:260-265.
p.260. If we define the entity we call a "person" as the sum total value of humanity which make us unique and different from lower animals, then determination of what death really means involves finding out if that portion of consciousness unique to humans has ceased to exist.
p.260. Without brain function, it seems reasonable that there is "no one home" for the senses to deliver stimuli to, no "person" there to enjoy the fruits of life the body is able to deliver.
p.260. If we determine that "no one is home" in that portion of the brain which makes us a "person", it seems logical that continued support of lower brain functions must result in pointless discomfort, a situation for which lower animals are quickly euthanized.
p.261. CEREBRAL VESSEL ANGIOGRAPHY AND RADIONUCLEOTIDE SCAN. The gold standard for the determination of brain function. To date, no patient has ever survived who had undergone such a study and when demonstrated to have no cerebral blood flow.
p.264. We believe that any rational person would not wish to be maintained in suspended animation if, by the best criteria available, it were judged that there was no realistic hope of reanimation.
p.264. When evaluating the efficacy of treatment modalities, there is big difference between futility as it applies to eventual mortality and futility as it applies to resultant quality of life. The physician is ethically mandated to maintain life unless that treatment is medically futile, and by a reasonable clinical estimation that treatment is unlikely to achieve a desired effect.
p.264. The treatment would be medically futile because it is inappropriate for the underlying symptom and the complications of the treatment would be worse than the symptom it purported to treat.
p.265. Quality of life questions are for patients and their families to determine. The physician's realm is efficacy of medical treatment.
Crisp R. A Good Death: Who Best to Bring It?. Bioethics 1987; 1(1):74-79. (philosophical examination of Glover etc; "telostricians")
Crisp R. Reasonable Care? Some Comments on Gillett's Reasonable Care. Bioethics 1994; 8(2):159-167.
p.167 It is a mistake to see doctors either as curers (for sometimes they cannot cure us) or as killers (for most of the time they will not kill us). Rather we should see them as carers. And proper caring can call in special circumstances for killing.
Danis M, Southerland L, Garrett J et al. A Prospective Study of Advance Directives for Life-Sustaining Care. New England Journal of Medicine 1991; 324(13): 882-888.
p.882 In an analysis of 96 outcome events (hospitalization or death in the nursing home), care was consistent with previously expressed wishes 75 percent of the time; however, the presence of the written advance directive in the medical record did not facilitate consistency.
p.882 The effectiveness of written advance directives is limited by inattention to them and by decisions to place priority on considerations other than the patient's autonomy.
Crowley J. To Be or Not to Be: Examining the Right to Die. Journal of Legislation of Notre Dame Law School 1992; 18(2):347-355.
(compares Substituted Judgement Test, Limited Objective Test and Pure Objective Test)
p.350 The most important aspect of the Quinlan case was the court's holding that an incompetent person's right to refuse medical therapy is grounded in the right to privacy.
Davidson K, Hackler C, Caradine D, McCord R. Physicians Attitudes on Advance Directives. Journal of the American Medical Association 1989, 262(17):2415-2419.
Davies Jean, Raping and making love are different concepts: so are killing and voluntary euthanasia. Journal of medical ethics, 1988, 14:148-149.
p.148. No one is in any doubt about what constitutes the difference between love-making and rape; it is the consent of the receiver of the act. So it seems that we do need two very different words for what may be an identical sexual act, the crucial difference being whether or not it takes place by consent.
p.148. It is time the law in this country recognised that there is a great difference between killing and helping to die, and that it consists in the dying person's consent.
Davis A, Phillips L, Drought T, et al. Nurses' Attitudes Towards Active Euthanasia. Nursing Outlook (1995) 43(4):174-179.
Day M. An Act of Will. Nursing Times March 1994, 90(10):14.
p.14 Decisions on when to cease active treatment can put everyone involved through the emotional wringer.
Decisions of the Professional Conduct Committee in the Case of Dr Nigel Cox. General Medical Council News Review Supplement December 1992.
On the 21st September 1992 Dr Nigel Cox was convicted, at Winchester Crown Court, of an offence of attempted murder and was sentenced to 12 months' imprisonment, sentence being suspended for 12 months.
Degrazia D. Value Theory and the Best Interests Standard. Bioethics (1995) 9(1):50-61.
p.51 Discussions of patients' best interests are often naive, begging questions by presupposing some account of prudential value without defending it against plausible alternatives (or even showing any awareness of alternatives or of the philosophical issues involved).
Delden J, Pijnenborg L, Maas P. The Remmelink Study: Two Years Later. Hastings Centre Report 1993; 23(6):24-27.
(information about approximately 10,000 deaths)
p.25 Both proponents and opponents of euthanasia claimed that their point was proven by the numbers described.
p.25 The fact that Dutch law, by way of case law, has come to tolerate euthanasia and assisted suicide by no means implies that it will tolerate life-terminating acts without explicit request of the patient.
p.26 ...the impression may have arisen that the Dutch began by hastening the end of life on request and ended up with life-terminating acts that the patient had not explicitly requested. (PARA) This, however, is not necessarily true. First of all, we simply do not know whether unrequested life-terminating acts occurred less or more often in the past. To demonstrate a slippery slope one would need to show that something changed after introducing a certain practice, and for this at least two investigations would be required.
p.26 We conclude that no empirical data can be marshalled to support the slippery slope argument against the Dutch.
p.26 No patient is guaranteed euthanasia, and no physician is obliged to comply with a request for it. There must always be the doctor's conviction that euthanasia is the only acceptable way out of the suffering.
Delden J, Pijnenborg L, Maas P. Dances With Data. Bioethics 1993; 7:323-329.
p.324 Quite a few writers add cases from different MDEL categories to the euthanasia number as defined by us (i.e. as active and voluntary) to prove that in fact euthanasia (in their definition) occurs much more often than we reported.
p.327 To demonstrate a slippery slope one would need to show that something changed after introducing a certain practice and for this at least two investigations would be required. Even then it is doubtful that this would yield conclusive proof either for or against.
Delden J, Maas P, Pijnenborg L, Looman C. Deciding not to Resuscitate in Dutch Hospitals. Journal of Medical Ethics 1993; 19:200-205.
Diamond W, Jernigan J, Moseley R, Messina V, McKeown R. Decision-Making Ability and Advance Directive Preferences in Nursing Home Patients and Proxies. Gerontologist 1989; 29(5): 622-626.
p.625 ...patients with compromised decision making may be more likely to request aggressive therapeutic intervention. Discrepancies between stated preference and AD form signing, as well as between proxy and patient preferences, arose with sufficient frequency to merit concern.
p.626 Presenting the AD form alone without interview and discussion may elicit inaccurate preferences.
Dickens B. A Response to the Papers of Molloy and Colleagues (Canada) and Cranford (United States) on Advance Directives. Humane Medicine 1993; 9(1):78-84. p.80. The application of these theoretical responses within hypothetical scenarios to the actual events that occur is a matter of conjecture and speculation. This raises serious questions about the value of executing directives that specify great detail. Indeed, the more detailed an advance directive is, the more likely it is to vary from events that actually occur. It may be of more value for individuals to express themselves in their own terms, not in the medical jargon that health professionals use to write documents, and to address their personal goals, hopes and fears."
Docker C. Advance Directives/Living Wills. In: McLean S (ed). Contemporary Issues in Law, Ethics and Medicine. Dartmouth 1996:179-214.
p.188 With or without supportive legislation, the medicalization of the living will may, in some instances, reverse the real intent, which was to protect the autonomy of the patient in choosing a peaceful death.
p.189 Most attempts at living will documentation so far have been notable for their blandness, almost as if they were designed for lawyers and academics rather than lay members of the community who might have ailing health and poor eyesight.
p.189 Eloquent arguments for the use of the living will as a starting point for patient-doctor dialogue and understanding... ... fall short when we consider that, in Britain's hard-pressed health service, the doctor may barely have the time to explain current medication, much less sit and explain as yet non-existent diseases, prognoses and life-saving treatments. It would seem that explanations as well as safeguards should be built into the living will paperwork itself...
p.190 Pregnancy waivers, indicating whether or not a refusal of treatment shall be overruled in the event that the incapacitated person is concurrently pregnant, may be very helpful if the declarant is of child-bearing age, but might invoke further problems unless there were prior statutory clarification.
Docker C. Collected Living Wills. Edinburgh: Voluntary Euthanasia Society of Scotland 1993.
Docker C. The Way Forward. In: McLean S (ed). Death, Dying and the Law. Dartmouth 1996. pp129-160.
p.130-131 Once public debate has aired an issue, reform generally only proceeds from centrist arguments that are accessible to a broad populace; that juncture may quite probably have been reached on a number of the issues here under discussion, and so the diatribes of 'pro-life' and 'right-to-die' campaigners become tangential and anachronistic, fuelling the debate but not the reform.
p.131 Political and sociological perspectives may be more important than overreliance on the ability of the law to enable, effect or enforce change...
p.131 ...if developments cannot be predicted with certainty, the need for a consensual approach is emphasized: a) to maximize the chances of reform being implemented; b) to spread the burden of responsibility for reform as equally as possible within the society to which it applies; and c) to minimize any instability following implementation.
p.132 ...protests, opinion polls, eloquent arguments in favour of euthanasia or the more strident demands of voluntary euthanasia societies may provide supporting motivation for change, but the main instruments of reform are likely to be agreements between opposing factions, commonly held values such as compassion, practical caring, shared emotional responses to specific dilemmas and the insights these generate.
p.137[On Advance Directives] As long as basic conditions are fulfilled (that the directive is clearly established and applicable in the circumstances), their force at common law seems secure: but that the advance decision was clearly established and applicable in the circumstances, mean, for instance, that the patient clearly understood the result of refusing treatment, was capable of making a directive on the basis of such information, and that the instructions clearly coincide with circumstances in incompetence about which the patient had previously only hypothesized. That gives us sufficient ground to work out that they are persuasive legally - as long as the basic conditions are not challenged by medical opinion, or other evidence.
p.137 A case known as Re C, hailed by some as an important step forward for advance directives, was, in fact, only a step forward for advance decisions, and in a lower court at that. The court was able to establish, for a competent patient, that the decision was clearly established and applicable in the circumstances, and so make the decision binding - this facility is not the case for advance directives.
p.145 Proxies can be an unreliable way of protecting prior choice.
p.146 We can attempt to maximize the usefulness of living wills, without overstating their usefulness, their effectiveness, their applicability or thinking that they address more than a tiny part of the overall problem.
Donnie J,Gopalakrishnan G et al. The Relationship of Empathy to Moral Reasoning in First Year Medical Students. Cambridge Quarterly of Healthcare Ethics (1995) 4:448-453. The study found no correlation between moral reasoning and the four empathy subscales: perspective taking, empathetic concern, fantasy, and personal distress. Women had higher DIT amd mostly higher IRI scores than men. Because the two tests require the subject to relate to others based on the principle of justice or empathy, it was concluded that higher scores on the DIT and IRI reflected an other orientation as opposed to self-orientation.
Doukas D, Gorenflo D. Analyzing the Values History: An Evaluation of Patient Medical Values and Advance Directives. Journal of Clinical Ethics (1993) 4(1):41-45.
p.41 The Values History's purpose is to learn more about the patient's values that give meaning to advance directives chosen for medical therapies.
p.44 Over the past 25 years, medical literature has emphasized the importance of the principle of autonomy in medical decision making. Contrary to this trend, our findings demonstrate the importance of beneficence-based patient values in end-of-life decision making. Specifically, family-burden values were relevant to these decisions, while the autonomy-based values of communication and physician compliance were not pertinent. Therefore, the findings of this study challenge the contemporary presumption regarding the relative importance of the principles of beneficence and autonomy in advance decision making.
Doukas D, McCullough L. The Values History - The Evaluation of the Patient's Values and Advance Directives. Journal of Family Practice 1991; 32(2)145-150.
p.145: The validity of the Values History is based on a basic ethical consideration: the Values History enhances the autonomy of the patient in a way that present advance directives do not, by clarifying for the health care team the patient's expresses values underlying decisions to be carried out when decision making by the patient is no longer possible. One possible benefit of such an evaluation is to help physicians and institutions manage more reliable the uncertainties that surround advance directives.
Downie R, Charlton B. The Making of a Doctor - Medical Education in Theory and Practice (1992) Oxford University Press.
p.194 ...one distinguishing feature of doctors is their high level of professionalization, one feature of which is that doctors are influenced by their colleagues more than by anyone else. And doctors communicate with each other mostly by talking and through the professional journals.
Downie R. Limiting Treatment at the End of Life. EXIT Newsletter January 1994 1-3.
Downie R, Calman K. Healthy Respect: Ethics in Health Care. 1994 OUP.
P.37 ...whereas science, including the social sciences, gives us horizontal understanding we must in concrete situations supplement this by what we could call vertical understanding, the sort of understanding which comes from insight into a personal history. ...the second type of understanding of human beings, as distinct from the scientific sort, necessarily requires that one has developed in oneself a certain range of moral qualities, and especially compassion.
Doyal L. Withholding Cardiopulmonary Resuscitation: Proposals for Formal Guidelines. British Medical Journal, 306, 12 June 1993:1593-1596.
p.1593. Although there has been some discussion in the United Kingdom of hospital policy on withholding cardiopulmonary resuscitation from patients who suffer cardiac arrest, no consensus has yet emerged….A study conducted in a district general hospital suggested that considerable confusion existed over the resuscitation status of patients….In general, when there is a recognised professional duty to act to save life, not to do so in the face of cardiac arrest is a prima facie breach of the law. Morally an omission constitutes a choice, itself an action, which may or may not be culpable. Like any other actions, omissions must therefore be justified by the acceptability of their consequences - in this instance the death of a patient.
p.1595. A not for resuscitation order is clinically acceptable only if it is in "the best interests of the patient". This requires clear evidence that (a) a patient is irreversibly close to death in the short term or (b) resuscitation presents an unacceptably high probability of death or severe brain damage if the procedure is successful…..A senior clinician may think that attempted resuscitation will not be in the interests of a competent patient on grounds other than those [just referred to]. Examples are prognoses of a future poor quality of life or of death which is not imminent. In such a case informed consent for a not for resuscitation order must be obtained. It should be given in the presence of a witness and can be implied in the form of a stated wish by the patient "not to go on" or some equivalent.
p.1596. The production of formal guidelines will not in itself lead to changes in clinical behaviour. This will happen only when the guidelines are understood and accepted by those who would use them.
Dresser R. Advance Directives: Implications for Policy. Hastings Center Report November-December 1994, Special Supplement, p.S2-S5.
p.S3 Precedent autonomy clearly is important to many of the philosophers, legal academics, and policymakers writing on this subject. Empirical findings, however, indicate that many study subjects do not understand what an advance directive is and that fewer still have undertaken to complete a formal directive. These data suggest that the exercise of precedent autonomy might not be very important to most of the public. At least, not so important that they are willing to take the time and trouble to learn about directives and to complete a written directive. . . . The key question is whether the minimal use of directives is attributable to technical and other unnecessary barriers now keeping people from doing what they would prefer to do, or to a more basic problem with directives, which is that directives do not "fit" the concerns and needs of real people.
Dresser R., Whitehouse P J. The Incompetent Patient on the Slippery Slope. Hastings Center Report July-August 1994, p.6-12.
p.6 ...the current subordination of the incompetent patient's experiential interests is unsatisfactory on several scores. the ethicists' and policymakers' near-obsession with defending the competent person's right to control her future treatment has left the best interests standard inadequately developed and subject to widely varied interpretation.
p.7 Dementia is estimated to affect from 7 to 20 percent of persons between the ages of seventy-five and eighty-four, and 25 to 47 percent of persons above that age.
p.7 The vast majority of dementia patients have an experiential world. Unlike Nancy Cruzan and Karen Quinlan, most dementia patients are subjects with their own thoughts, perceptions, emotions, and perspectives. These patients are themselves affected by the medical interventions they receive - they subjectively experience the consequences of the treatment decisions made on their behalf. Yet the subjectivity of the dementia patient is often overlooked in treatment decisionmaking.
p.8 It is indisputably difficult for the competent observer to step into the shoes of a cognitively impaired individual. Frequently, patients are unable to communicate by using language. The worlds of those who can speak can be especially difficult to interpret. In such cases, observers are left to rely on behavioral and physiological data as the basis for attempting to understand how incompetent patients experience their lives.
p.8 If we adopted the skeptical position regarding our access to impaired patients' subjectivity, then no one could argue for or against a particular treatment action on grounds of its affect on the patients themselves. If, on the other hand, we accept that incompetent patients can be directly harmed and benefited, then we are obligated to attempt to understand as best we can their subjective experiences.
p.10 It is an intimidating, indeed, frightening responsibility to calculate the overall value of life for another human being. Both history and current practice reveal too many examples of its abuse. It is understandable that some would prefer to avoid the calculation, erring on the side of treating all who cannot decide for themselves. Yet this "solution" would expose incompetent patients to unjustified experiential burdens; it would also impose severe burdens on patients' families and others without countervailing benefit to the patients themselves.
p.10 For life-sustaining treatment to be appropriate, it must confer a substantial enough benefit to outweigh both its customary risks and the distinctive experiential burdens it poses for dementia patients unable to fathom its purpose.
p.11 When the ability to communicate, respond, or otherwise interact with people and objects in the world is lost, how can continued life, even in the absence of severe pain, constitute a benefit of any significance to these patients themselves?
p.11 [Many] moderately impaired patients are capable of simple relationships, retain some memory of the past and concept of the future, can initiate purposeful movement, or are otherwise able to participate in the lives they are living. A substantial number are also responsive to rehabilitative and other positive efforts to improve their quality of life. Although their existence may strike observers as "degrading" or "undignified," these patients typically are not concerned about such matters.
p.11 We simply cannot make a defensible judgement about when life-sustaining treatment would advance an incompetent patient's interest without attempting to ascertain that patient's subjective reality.
Drey P, Giszczak J. May I Author My Final Chapter? Assisted Suicide and Guidelines to Prevent Abuse. Journal of Legislation of the Notre Dame Law School 1992; 18(2):331-345.
(also analyses some of the Iowa Model Aid In Dying Act)
Drug and Therapeutics Bulletin 1997; 35(6): 41-43. Managing Self-harm: The Legal Issues.
p.41 Each year about 100,000 people present to UK hospitals with deliberate self-harm, the most common form of which is poisoning with medicines or other pharmacologically active substances. As many as 95% of self-poisonings are intentional drug overdoses but only around 40% of patients who poison themselves express a wish to die.
p.43 A competent patient who has taken an overdose and who refuses treatment, in the knowledge of what the therapy entails and of the potentially fatal risks of such refusal, cannot be legally treated even if he or she subsequently becomes unconscious.
Dutch Argue that Mental Torment Justifies Euthanasia. BMJ (News) 1994; 308:431-432.
The Dutch attorney general has said that a psychiatrist who helped a physically fit but depressed 50 year old woman to commit suicide should not be prosecuted. The case against Dr Boudewijn Chabot, a psychiatrist from Harlem, has been taken to the Supreme Court by the Dutch judicial authorities in order to get a legal judgement that will influence future cases.
Dutch Law Defines Patients' Rights. BMJ (News) 1994; 308:616.
The Netherlands has become the first country in Europe to pass a law defining the responsibilities of doctors to their patients.
Doctors must now provide clear information, written down if requested, before they obtain consent for any operation. This information must include the nature, goals, and risks of the treatment. This can be overruled, but only if a doctor can argue that it would put the patient at a serious disadvantage; then the information must be given to a third party. The patient's wish not to be given information must be respected unless this would present dangers to the patient or to others.
Doctors are legally obliged to honour "living wills."
Dyer C. High Court Says Advance Directives are Binding. BMJ (News) 23 Oct 1993; 307:1023-1024.
p.1023 A schizophrenic patient at Broadmoor Hospital won a High Court injunction banning doctors from amputating his gangrenous right leg now or in the future.
p.1024 Doctors will still be able to challenge advance directives in the courts on the grounds that the wording is not precise enough or does not cover the proposed treatment, or that the patient was not competent to take a decision when the living will was made.
Dworkin R. Life's Dominion - An Argument About Abortion and Euthanasia. London: Harper Collins 1993.
(analysis of Roe v Wade and Casey with reference to appointed circuit judges: pp.8-9)
p.26 Three distinct issues come together in decisions about euthanasia. We must be concerned how best to respect the patient's autonomy, his best interests, and the intrinsic value or sanctity of his life.
p.184 the law produces the apparently irrational result that people can choose to die lingering deaths by refusing to eat, by refusing treatment that keeps them alive, or by being disconnected from respirators and suffocating, but they cannot choose a quick, painless death that their doctors could easily provide.
p.180 Every state in the United States now recognizes some form of advance directive: either "living wills" documents stipulating that specified medical procedures should not be used to keep the signer alive in certain specified circumstances, or "health-care proxies" - documents appointing someone else to make life and death decisions for the signer when he no longer can. And we all know we may have to make such decisions - as relatives or friends or doctors - for others who have signed no living will or proxies.
p.211 There is no doubt that most people treat the manner of their deaths as of special, symbolic importance: they want their deaths, if possible, to express and in that way vividly to confirm the values they believe most important to their lives.
p.217 Making someone die in a way that others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny.
p.225 When a mildly demented person's choices are reasonably stable, reasonably continuous with the general character of his prior life, and inconsistent and self-defeating only to the rough degree that the choices of fully competent people are, he can be seen as still in charge of his life, and he has the right to autonomy for that reason. But if his choices and demands, no matter how firmly expressed, systematically or randomly contradict one another, reflecting no coherent sense of self and no discernible even short-term aims, then he presumably has lost the capacity that is the point of autonomy to protect. Recognizing a continuing right to autonomy for him would be pointless. He has no right that his choices about a guardian (or the use of his property, or his medical treatment, or whether he remains at home) be respected for reasons of autonomy. He still has the right to beneficence, the right that decisions on these matters be made in his best interests; and his preferences may, for different reasons, be important in deciding what his best interests are. But he no longer has the right, as competent people do, himself to decide contrary to those interests.
p.238 People who want an early, peaceful death for themselves or their relatives are not rejecting or denigrating the sanctity of life; on the contrary, they believe that a quicker death shows more respect for life than a protracted one.
p.239 Whatever view we take about abortion and euthanasia, we want the right to decide for ourselves, and we should therefore be ready to insist that any honourable constitution, any genuine constitution of principle, will guarantee that right for everyone.
Economist, A time to die. The Economist, August 5 1989:19.
p.19. No calculating utilitarian, applying Bentham's cold arithmetic of pleasure versus pain, can demand that the old be killed or starved to save money for the young. It is the old themselves who, for their own dignity and out of concern for their successors, must learn to demand less of the court physicians. . . . Those who channel money, both public and private, to medical research need the courage to see that they will earn gratitude by gunning for misery as well as for the headline-making killers…. There is room for plenty of theories about what makes life worth living, but none of them can include longevity as an end in itself….Think of a person's life in biographical rather than biological terms - in terms of achievements, experiences, responsibilities discharged and so on, not in terms of blips on a hospital scanner. It then becomes easier to see when somebody's life has been completed. When a person (or his relatives) can see that a biography is finished, it is not for doctors to try to write a painful extra chapter.
Emanuel L. What Makes a Directive Valid? Hastings Center Report (1994) 24(6):S27-S29.
S27 The theoretical basis for advance directives is that the end of life and the process of death are critical matters that the individual has more right to manage than any other person. The person who leads it, more than any other person, has a rightful interest in moulding the narrative whole that is her or his life.
Emanuel L, Barry M, Stoeckle J et al. Advance Directives for Medical Care - A Case for Greater Use. New England Journal of Medicine 1991; 324(13): 889-895.
p.889 ...most patients with the acquired immunodeficiency syndrome (AIDS) seem to want advance directives.
p.889 ...when patients do have directives, their physicians often do not know of them.
p.893 ...planning is similar to screening and other forms of preventive health care.
Emanuel E, Emanuel L. Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis. Journal of the American Medical Association 1992; 267(15):2067-2071. [includes history of proxy decision making, precedents etc]
p.2068 Historically, the ethical justification for proxy decision making inheres in two related claims. First, the incompetent patient's right to refuse medical care can be exercised through a proxy decision. Second, knowing the patient's wishes well, the proxy will make "the decision that the incompetent patient would make if he or she were competent." The proxy decision maker is justified in exercising the incompetent patient's right to refuse care to the extent that he or she can "don the mental mantle" or "stand in the shoes" of the patient and make the same decisions under the circumstances that the patient would. In legal doctrine, this is called substituted judgement.
Emanuel L, Emanuel E. Decisions at the End of Life Guided by Communities of Patients. Hastings Center Report 1993 Sep-Oct; 6-14.
article also argues a case for "default proxies")
p.6 ...few people ever use advance directives, and even when they do, physicians do not always honour them. In addition, the documents may be unavailable when relevant.
p.7 Overall, when we combine data we can conclude that living wills and other written instructional directives can be relied on to represent a patient's wishes accurately, under good circumstances, in 46 to 84 percent of decisions. The more serious limitations are that only about 20 percent of the population use them, and the directions of even fewer will be honoured.
p.7 Only half of the patients who designated a proxy in a written document have discussed with that person their preferences regarding specific interventions, such as mechanical breathing or artificial feeding and fluids.
p.8 ...potential proxies are more hesitant to withdraw or terminate life-sustaining treatment than patients are. The burden of decisionmaking is heavy, and produces much greater reluctance to withhold care from a loved one than from oneself.
p.7 ...of the proxies who do manage accurately to judge patients' wishes, less than two-thirds will be emotionally capable of carrying them out.
Emanuel L, Emanuel E, Stoeckle J, Hummel L, Barry M. Advance Directives: Stability of Patients' Treatment Choices. Archives of Internal Medicine (1994) 154:209-217.
p.209 Most people made moderately stable decisions when using scenario- and treatment-specific directives, and stability improved after they reviewed the decisions, especially among those who had discussions with their physicians.
p.209 These findings suggest that advance directives can be relied on 1 to 2 years after completion to reflect a patient's choices.
p.209 The common assumption justifying the use of advance directives is that a patient's prior expression of treatment choices accurately represents his or her future choices, that is, they are stable over time.
p.212 Stability was moderate among patients who did not complete high school and was greater among patients with a higher education.
p.216 This finding suggests that treatment directives made in the absence of specific education may reflect autonomous choices somewhat better than proxy decisions if the proxy acts in the absence of specific prior guidance from the patient.
Evans D, Funkenstein H, Albert M, Scherr P, et al. Prevalence of Alzheimner's Disease in a Community Population of Older Persons: Higher Than Previously Reported. Journal of the American Medical Association 1989. 262(18):2551-2556.
Farrell, Liam, (General Practitioner.) The choice to live or die should remain to the end. British Medical Journal, (Letters), 310, June 1995:1467.
Life is a matter of choice and that choice should remain ours to the end. Applying broad ambiguous ethical principles to individual tragedies is casuistry of the most pernicious form.
Fennell, Philip. The Law Commission Proposals on Mental Incapacity. Family Law (Aug 1995) 420-423.
p.422: While it may have been widespread practice in the past to accept delegated consent from a relative of the patient, the case-law on consent from the 1980s and 1990s has made it clear that relatives' consent on behalf of incapacitated people has no legal standing, and the Law Commission endorses this.
Fisher R, Meslin E. Should Living Wills be Legalized? Canadian Medical Association Journal 1990, 142(1):23-26.
Fletcher J. The Right to Choose When to Die. Hemlock Quarterly Jan 1989, p.3.
p.3 Six Propositions. 1.If we must die, doing so is not a right. 2.We can only have a right to choose when to die. 3.If we set the time for dying, or shorten the time of our being alive, that is suicide, not natural death; and we cause the death, the disease does not. 4.If we help a patient to die who has chosen to stop life-prolonging treatment, we are assisting suicide. 5.Assisting suicide is euthanasia. 6.The methods used are morally irrelevant; what is significant is the intention.
Final Report of the Netherlands State Commission on Euthanasia: An English Summary (anonymous translation). Bioethics 1987; 1(2):163-174.
p.166 The State Commission defines euthanasia as the intentional termination of life by another party at the request of the person concerned.
Fins JJ, Bacchetta MD, Framing the Physician-Assisted Suicide and Voluntary Active Euthanasia Debate: The Role of Deontology, Consequentialism, and Clinical Pragmatism. Journal of American Geriatrics Society, 1995, 43(5):563-568.
p.563 We define physician-assisted suicide (PAS) as a physician's knowingly providing the means to commit suicide to a competent patient who voluntarily makes this request and then uses those means independently to take his own life. Voluntary active euthanasia (VAE) occurs when a physician intentionally provides and administers the means to directly cause death in a patient who voluntarily requests this service.
Foley K. The Relationship of Pain and Symptom Management to Patient Requests for Physician-Assisted Suicide. Journal of Pain and Symptom Management 1991, 6(5):289-297.
p.289 We need to address the access to expert care of distressing symptoms including pain and psychological distress as well as the quality of life of this patient population before we can fully address the options for terminating life.
Foot, Philippa. Euthansia. The Open University, Supplementary Material A310.
p.16: It is important to emphasise that a man's rights may stand between us and the action we would dearly like to take for his sake.
p.17: Why should someone not be able to waive his right to life, or rather, as would be more likely to happen, to cancel some of the duties of noninterference that his right entails?...The important thing is that he gives a critical permission, and it seems that this is enough to cancel the duty normally associated with the right. If someone gives you permission to destroy his property it can no longer be said that you have no right to do so, and I do not see why it should not be the same with taking a man's life.
p.18: Apart from the special repugnance doctors feel towards the idea of lethal injection, it may be of the very greatest importance to keep a psychological barrier up against killing. Moreover it is active euthanasia which is the most liable to abuse. hitler would not have been able to kill 275,000 people in his 'euthanasia' programme if he had had to wait for them to need life-saving treatment.
p.19: As things are, people do, by and large, expect to be looked after if they are old or ill. this is one of the good things that we have, but we might lose it, and be much worse off without it. it might come to be expected that someone likely to need a lot of looking after should call for the doctor and demand his own death....Such possibilities should make us very wary of supporting large measures of euthanasia, even when moral principle applied to the individual act does not rule it out.
Forster, Terence A, (Retired general practitioner.) Can society deny the right to die? British Medical Journal, 310, Letters, June 1995:1466.
There is no greater arrogance than acting in the belief that society knows best how one should conduct one's life and death.
Fox E, Siegler M. Redefining the Emergency Physician's Role in Do-Not-Resuscitate Decision-Making. American Journal of Medicine 1992; 92: 125-128.
Fox Jane, Professional acceptance of living wills to be encouraged. British Journal of Nursing, 1994, 3(5):202-203.
p.203. We, as a profession, should not be fearful of living wills but should welcome them as a step forward and encourage both professional and public debate in an open and living way.
Fried T, Gillick M. The Limits of Proxy Decision Making: Overtreatment. Cambridge Quarterly of Healthcare Ethics (1995) 4: 524-529.
p.524 We found a significant number of cases in which healthcare providers at a long-term care facility came into conflict with surrogates because the treatment desired by the surrogate was viewed as excessively burdonsome when evaluated by an experienced team of nurses, physicians, and social workers. Neither a court-appointed guardian nor an institutional ethics committee were likely to be able to resolve these conflicts because of lack of clarity about what constitutes the best interest of impaired nursing home patients.
p.527 The solution to the dilemma is to develop institutional policies within longterm care facilities that would restrict the scope of treatment decisions made by proxies. Policies would be derived from the experience of a broad spectrum of nursing home staff... caring for patients with severe dementia. They would delineate what constituted an acceptable level of care designed to promote the comfort and well-being of demented patients. Within the context of care plan outlines that insured the goal of patient comfort, proxies would participate in the implementation of specific therapies based on their view of the importance of the goal of life prolongation.
p.528 Institutional policies, which reflect religious or other convictions, should be developed within a framework established by professional societies.
Fried T, Stein M, O'Sullivan P et al. Limits of Patient Autonomy - Physician Attitudes and Practices Regarding Life-Sustaining Treatments and Euthanasia. Archives of Internal Medicine 1993; 153: 722-728.
(study of 392 physicians)
p.722 Physicians value the concept of patient autonomy but place it in the context of other ethical and legal concerns and do not always accept specific actions derived from this principle.
p.726 ...although respondents believe that the principle of patient autonomy should usually be complied with, other concerns can determine how a physician will act.
Gamble E, McDonald P, Lichstein P. Knowledge, Attitudes, and Behaviour of Elderly Persons Regarding Living Wills. Archives of Internal Medicine 1991; 151:277-280.
p.279 Our study population stated a preference for a surrogate or proxy decision making by either a spouse or family member (93%, 70 persons) if they were unable to make or express decisions for themselves.
p.280 However, in this study population, only 45% (34 persons) had actually discussed their wishes with the specified person.
Garret J, Harris R, Norburn J, Patrick D, Danis M. Life-sustaining Treatments during Terminal Illness: Who Wants What? Journal of General Internal Medicine 1993, 8(July):361-368.
p.361 [concluded that:] Patients' choices for care in the event of terminal illness relate to an intricate set of demographic, educational, and cultural factors. These results should not be used as a shortcut to determine patient preferences for care, but may provide new insights into the basis for patients' preferences. In discussing choices for future life-sustaining care, physicians need to explore with each individual the basis for his or her choices.
p.366 We found variation in the degree to which elderly outpatients stated desires for life-sustaining care if they were to become terminally ill. Women wanted life-sustaining treatments less often than did men; black patients were more inclined to choose life-sustaining treatments than were white patients; patients with less education and patients scoring higher on a depression index were more likely to state a desire for more treatment.
Gelder M, Gath D, Mayou R. (1989) Oxford Textbook of Psychiatry 2nd Edition. Chapter 13 - Suicide and deliberate self-harm.
p479 In recent years a large proportion of admissions to medical wards has been people who have deliberately taken drug overdoses or harmed themselves in other ways. It has become clear that only a small minority of these patients intend to take their lives; the rest have other motives for their actions. Equally, only a minority are suffering from psychiatric disorder; the rest are facing difficult social problems.
Ghusn H, Teasdale T, et al. Older Nursing Home Residents Have a Cardiac Arrest Survival Rate Similar to That of Older Persons Living in the Community. Journal of the American Geriatrics Society 1995; 43:520-527.
p.520 These data suggest that patients who have an unwitnessed arrest in the nursing home should not receive resuscitation attempts, and in those patients for whom paramedics are called, resuscitation efforts should not proceed any further if their original rhythm is asystole or electromechanical dissociation.
Glover, Jonathan. Causing Death and Saving Lives.
p.184: If we know that a person himself knowingly took a lethal pill, there is by comparison with euthanasia little ambiguity about the nature of his decision. Whether this act was well thought out or one resulting from temporary depression, there is strong reason to think that at that moment he was acting on his own decision to die.
p.186: [Refers to] the suggestion that, if voluntary euthanasia were known to be an option, people might put pressure on their burdensome relations to volunteer. It is hard to evaluate this objection. It seems to me rather implausible, but perhaps I am being too optimistic. In advance of trying a voluntary euthanasia policy, we do not know how people would behave.
p.187: [T]here are sometimes cases where a person who is old or ill does put a great strain on a family, and where he sees this and would rather die than have the situation continue, it is not obvious that a paternalistic refusal to carry out his wishes is justified.
p.195: Some of us would rather run a risk of being dead than the same degree of risk of being for years unable to communicate with anyone.
Gibson J. (1990), 'Bioethics and the Courts - Looking over the Cruzan Horizon and Towards the Future', Courts, Health Science & the Law, 1(2):188-193.
Gibson J. (1990), 'Values History Focuses on Life and Death Decisions', Medical Ethics, 5(1):1-2+17.
Gibson J (1990), 'National Values History Project', Generations, Vol.14 Supplement:51-53.
Gibson J. Reflecting on Values. Ohio State Law Journal (1990) 51(2):451-454.
p.452 ..whereas [such] formal directives ask for a series of medical conclusions, the Values History form targets value premises that are not medical in nature but are always considered (consciously or not) when making medical decisions. Other advance directives require one to anticipate medical conditions that might arise and to decide in advance what medical treatment one would choose or not choose. No mention is made about who the individual is now, what matters to the individual, or why the individual has made the choices he has - in short, no attention is paid to the only information that is real and not hypothetical. These insights gathered over the past several years may account for the unexpected appeal of the Values History form, especially to persons whose job requires them to encourage others to execute advance directives, such as health care professionals, administrators, pastors, and counselors.
Gibson J., Nathanson P. (1990), 'Medical Treatment Guardians: When Someone Else Must Decide', Generations, Vol.14 Supplement:43-46.
Gillett G. Killing, Letting Die and Moral Perception. Bioethics 1994; 8(4):312-328. (pro- refusal-of-treatment, but against v.e.)
p.328 A doctor who intervenes to end her patient's life should do so knowing that the law disapproves of this act and that she might be called to account for performing it. It may well be, however, that she has made the correct moral response to her patient's need and that any sensitive court of law would agree. In this, she and the law would show that type of mercy which may force us to desperate and unusual measures in tragic situations.
Gillick M, Fried T. The Limits of Proxy Decision Making: Undertreatment. cambridge Quarterly of Healthcare Ethics (1995), 4:172-177.
p.177 A resolution to this dilemma is for states to modify their proxy legislation, eliminating restrictions on the types of therapy or kinds of medical illness that proxies may address, and adding a proviso that proxy decisions cannot violate the explicit norms of the medical profession.
Gillick M, Hesse K, Mazzapica N. Medical Technology at the End of Life - What would Physicians and Nurses Want for Themselves? Archives of Internal Medicine 1993 Nov 22; 153: 2542-2547.
p.2542 Nurses predicted significantly higher refusal rates than physicians...
p.2542 Factors predicting refusal patterns were age and being a nurse.
p.2542 We conclude that physicians and nurses, who have extensive exposure to hospitals and sick patients, are unlikely to wish aggressive treatment if they become terminally ill, demented, or are in a persistent vegetative state. Many would also decline aggressive care on the basis of age alone, especially in the presence of functional impairment.
p.2542 The assumption underlying advance directives is that patients are able to imagine situations in which they might subsequently find themselves...
p.2457 These observations further support the hypothesis that clinical experience affects preferences. This suggests that individuals who complete advance directives do so in the absence of adequate information.
Gillon R. (1992) Philosophical Medical Ethics. Chichester: John Wiley & Sons.
Goddard M. Hospice Care in the Future: Economic Evaluation may be Useful. Cancer Topics 1992, 9(1):10-11.
p.10 Hospices absorb a substantial amount of resources. Expenditure on services has been estimated at +54 million in 1988/89, excluding the costs of capital development which are likely to be large.
p.10 ...a large study undertaken in the USA revealed that without the help of family and friends, hospice care could not achieve any savings over non-hospice care at all...
p.11 The superiority of hospice care over conventional care is often assumed, but again there is limited evidence to support this assumption.
Goleman, D. Emotional Intelligence. Bloomsbury paperbacks. p.182 There are many ways medicine can expand its view of health to include the emotional realities of illness. For one, patients could routinely be offered fuller information essential to the decisions they must make about their own medical care; some services now offer any caller a state-of-the- art computer search of the medical literature on what ails them, so that patients can be more equal partners with their physicians in making informed decisions. Another approach is programs that, in a few minutes time, teach patients to be effective questioners with their physicians, so that when they have three questions in mind as they wait for the doctor, they will come out of the office with three answers (the examples given are the Planetree program at Pacific Presbyterian Hospital in San Francisco, and a program called Making Patients Effective by Dr Mark Lipkin Jr at New York University Medical School.)
Graber G. Assisted Suicide is Not Voluntary Active Euthanasia, but It's Awfully Close. Journal of the American Geriatrics Society 1993; 41(1):88-89.
p.88 ...a physician's willingness to consider voluntary active euthanasia as an option is likely to enhance trust, and refusal even to entertain such requests may be viewed as inhumane and uncaring.
Griffiths J. Assisted Suicide in the Netherlands: The Chabot Case. Modern Law Review 1995; 58(2):232-248.
Griffiths J. Assisted Suicide in the Netherlands: Postscript to Chabot. Modern Law Review 1995; 58:895-897.
Griffiths J. The Regulation of Euthanasia and Related Medical Procedures that Shorten Life in the Netherlands. Medical Law International 1994; 1:137-158.
Two important characteristics of Dutch society suggest themselves as possibly relevant. In the first place, it is characterised by a relatively high level of social solidarity, manifesting itself in the institutions of an advanced welfare state, including a comprehensive health-care system. The fear that poverty and the costs of medical care might drive dying people into 'involuntary' euthanasia is rather far-fetched in the Netherlands.
A second important characteristic of Dutch society concerns the level of confidence in public institutions and professions.
Gunnell D, Frankel S. Prevention of Suicide: Aspirations and Evidence. British Medical Journal 1994; 308:1227-1233.
p.1229 ...40% of suicides make contact with their general practitioner in the month before death.
p.1231 Suicide offers an escape from an intolerable, although probably transient, period of emotional turmoil.
Hagenouw, Dr Ruud. Choosing to End One's Life. The Journal for the Medical and Dental defence Union of Scotland, Spring 1996 edition, p.3-4.
p.3: A doctor can reject euthanasia as a matter of principle or may have objections relating to the particular situation. The latter case implies that the doctor conditions for euthanasia to take place, have not or have not yet been met. Professional standards require, however, that the doctor already makes clear his and her attitude towards euthanasia at an early stage, so as to prevent differences arising between doctor and patient later on. A doctor with conscientious objections must, at an early enough stage, give the patient the opportunity to get in touch with another doctor who does not have such objections. If necessary he or she must help the patient to do so.
p.3-4: [I]t is not possible to make a distinction between physical and mental suffering. the actual cause of the suffering does not, after all, indicate the extent to which suffering is experienced. If the suffering cannot be alleviated, it is no longer relevant whether it is mental or physical.
Hanson LC, Rodgman E, The Use of Living Wills at the End of Life - A National Study. Archives of Internal Medicine, May 13 1996, 156:1018-1022.
p.1018. At present, only about 15% of adults have completed living wills.
p.1019. Living wills were most often prepared by those dying of cancer (6.4%) and least often used by those dying of diabetes, liver disease, or heart disease.
p.1021. Women who are white, well educated, and well insured are most likely to have voluntarily prepared a living will. Use of living wills is particularly rare among blacks, patients with limited education, and those with lower incomes or public health insurance.
Horton S, Persistent vegetative state: what decides the cut-off point? Intensive and Critical Care Nursing, 1996, 12, p40-44.
p.40. The term PVS should be confined to patients who show no psychological meaningful response and have sleep and wake cycles, with periods of eye opening. Abnormal motor responses usually show in all limbs.
Hardwig J. SUPPORT and the Invisible Family. hastings Center Report 1995 July/August, Special Supplement: G22-G25.
p22 For millennia, medical ethics has focussed on the doctor-patient relationship. Thus the SUPPORT trial to improve clinical decisionmaking for seriously ill patients can be viewed as a report about the failure of this dyadic relationship. ...physicians who are so unconcerned about patient preferences that they don't even bother to look at them when they're placed in the chart, and patients who do not take advantage of opportunities to discuss their treatment preferences with their physicians.
p.23 We must also recognize that families are not simply or even primarily "patient support systems." They must not be thought of or treated that way by doctors, hospitals, health care planners, or bioethicists. To do so is immoral, as Kant made plain. It involves treating the rest of the patient's family as mere means to the preferences of the patient.
p.24 Treatment decisions that respect and enhance the autonomy of the patient may at the same time disregard and shatter the autonomy of the patient's caregivers and the rest of her family... If autonomy is a value, it's a value for all involved.
Hardwig J. The Problems of Proxies with Interests of Their Own: Towards a Better Theory of Proxy Decisions. Journal of Clinical Ethics 1993 Spring: 20-27.
p.21 ...the reservations we have about interested family members and their proxy decisions are partly of our own making. The accepted theory of proxy decisions is deeply flawed and must be recast. Our medical practice is, I believe, often better than the conventional theories of proxy decision making. Nonetheless, some of our deepest worries about proxy decision making grow out of the morally inappropriate instructions we give them.
p.26 ...we must provide guidance and support for those caught in the moral crucible of proxy decisions. Not only would this approach be more ethically sound, but it would, I believe, decrease the number of inappropriate proxy decisions.
Hardwig J. What About the Family. Hastings Center Report 1990 March/April:5-10.
p.5 The prevalent ethic of patient autonomy ignores family interests in medical treatment decisions. Acknowledging these interests as legitimate forces basic changes in ethical theory and the moral practice of medicine.
p.10 Our present ethical theory can only condemn as unethical any attempt to weigh in the interests of other family members. If we would acknowledge the moral relevance of the interests of the family we could perhaps develop an ethical theory that would guide and support physicians, patients, and families in the throes of agonising moral decisions.
Hare J, Pratt C, Nelson C. Agreement between Patients and Their Self-Selected Surrogates on Difficult Medical Decisions. Archives of Internal Medicine 1992 May; 152: 1049-1054.
...within individual pairs, agreement on treatment occurred only 70% of the time even though surrogates were asked to base their treatment decisions on substituted judgement. Patients considered "burden on the family" and "time left to live" as the most important factors in choosing among difficult treatment options, while surrogates identified the patients' pain as the most important factor.
...physicians and spouses are no more accurate at predicting the treatment preferences of patients than would be expected by chance alone...
Clearly, confidence on the part of surrogates does not necessarily ensure the surrogates' accurate determination of patients' wishes.
...surrogates are often required to make emotion-laden decisions on the basis of an imperfect set of "facts."
Hauser JM, Kleefield SF, Brennan TA and Fischbach RL, Minority Populations and Advance Directives: Insights from a Focus Group Methodology. Cambridge Quarterly of Healthcare Ethics, 1997; 6(1):58-71.
p.58. It has been shown that not only have fewer members of minority groups completed advance directives, fewer desire to complete them.
p.59. We suggest that the low use of advance directives in the minority community is related to a lack of both trust and satisfaction with care received or even with the lack of access to care at all.
p.66. In the African-American and Hispanic groups, suspicions regarding the practice of medicine centered around specific actions that physicians might take or have taken in the past as well as a deeper lack of trust toward the healthcare system.
p.66. One particularly disturbing topic for a number of African-American participants was the perception that organs were removed from African-Americans prior to their deaths in order to be implanted into other patients.
p.66 In the Hispanic group, the issue of suspicion of medicine arose less frequently and when it did, it was not accompanied by the same intensity that we encountered in the African-American groups.
p.67. The Caucasian group, by contrast, mentioned suspicions of "the system" but these concerns were tempered by the idea that the combination of one's personal physician and an advance directive might serve as a safeguard.
p.67 ...the issue of lack of trust and suspicion about the healthcare system is a significant influence in shaping the attitudes of the African-Americans with whom we spoke. Improved communication that includes detailed reasons for the physicians' actions could mitigate some of the suspicion that some patients may harbor.
p.68. ...a lack of awareness of the existence of advance directives and of the nuances of their legal standing is common across all groups.
p.70. In summary, our research reiterates the concept that an advance directive is only as good as the past discussions that have taken place to prepare it and the future discussions between caregivers and patients that its existence will encourage.
Heap M, Munglani R, Klinck J, Males A. Elderly Patients' Preferences Concerning Life-Support Treatment. Anaesthesia 1993, 48:1027-1033.
Forty percent wanted to make the decision about institution of artificial ventilation themselves if mentally competent and 24% wanted to use some form of advance directive if mentally incompetent.
p.1031 Elderly patients faced with a life threatening illness are a heterogeneous group. They have widely differing preferences for treatment and there are few external guides to these preferences.
Heintz A P M. Euthanasia: can be part of good terminal care. British Medical Journal, 25 June 1994, p.1656.
p.1656 It makes no sense to discuss euthanasia in terms of being for it or against it. The basic question is whether we accept the right of human beings to decide for themselves how their lives will end.
Helme T. Stances Towards Euthanasia. Psychiatric Bulletin 1991, 15:1-3.
p.3 A Terminal Care Commission could be instituted, by the Secretary of State on the model of the Mental Health Act Commission, in order to review the provision of terminal care and to establish guidelines for good practice. The Commission could then be approached, either by practitioners or by patients or relatives, and second opinions provided on request.
p.3 [discusses and proposes a 2nd possibility, that of Euthanasia Tribunals.]
High D. Advance Directives and the Elderly: A Study of Intervention Strategies to Increase Use. Gerontologist 1993; 33(3):342-349
p.347 The study further suggests that the most effective intervention is one that provides older people with a moderate level of well-written, easily understood educational materials accompanied by easy access to assistance in completing the appropriate documents.
p.347 The reasons for the low rate of use of advance directives among U.S. citizens, especially older Americans, are more complicated than a lack of information and a lack of encouragement from health care professionals.
p.348 The data suggest that serious attention needs to be given to understanding elderly people's overwhelming preference for family surrogates.
p.348 Moreover, it is not clear that all of life's events, especially end-of-life health care decisions, can or should be anticipated... As a consequence, it may well be appropriate for legislators, policymakers, ethicists, health care professionals, and advocacy groups to rethink from the bottom up the whole advance directive process.
High D. Families' Roles in Advance Directives. Hastings Center Report November-December 1994, Special Supplement, p.S16-S18.
p.S16-S17 many elderly people were not completing advance directives because they were confident that they could rely on others to make any necessary decisions for them, including trusting family to handle such tasks.
p.S18 A preliminary study conducted in 1986 found that elderly patients were more interested in who made the decision than in whether their own decisions were replicated.
p.S18 If the advance directives process is to succeed, serious attention is needed regarding whether advance directives, especially written directives, should include expression of preferences about matters other than life-sustaining treatments. For example, why shouldn't a patient be able to express wishes regarding home care, nursing home care, or special facility care should he or she fall victim to Alzheimer disease?
Hiller T, Patterson J, Hodges M, Rosenberg M. Physicians as Patients - Choices Regarding Their Own Resuscitation. Archives of Internal Medicine (1995) 155:1289-1293.
p.1291 ...most physicians actively engaged in primary care would not choose CPR for themselves with chronic diseases and functional limitations as defined by our vignettes - particularly with advancing age. Alternatively, many would choose CPR if they were having an acute myocardial infarction with ventricular dysrhythmia, a condition for which it was designed and has been shown to be beneficial.
p.1291 Alzheimer's dementia was consistently the condition in which physicians would least want CPR for themselves.
Hoefler J Deathright: Culture, Medicine, Politics, and the Right to Die. Oxford: Westview Press 1994.
p.173 "With In re Quinlan (1976), it was argued that the constitutionally protected right to die could be exercised by a family on behalf of an incompetent patient as long as the family could establish that its decision was consistent with the decision the incompetent principal would make if able to do so. This knowledge might include understandings about the principal's religious beliefs, general attitudes regarding medical care, and other substantial (albeit indirect) evidence of that person's frame of mind with regard to right-to-die issues. ... This reasoning would become known as the "substituted judgement" standard, which holds that a third party's best guess about the wishes of the incompetent patient could be substituted for that which was impossible to obtain: the expressed wishes of the patient."
p.173 "The term substituted judgement actually originates with the Massachusetts case In re Spring (1980). In this case, the court decided that a seventy-eight-year-old incompetent individual with end-stage kidney disease could forgo hemodialysis, based on what was known about the individual's general preferences in such matters. No written or specific oral instructions would be required as long as the principal's predisposition toward the withdrawal of life support could be reasonably demonstrated by a third party."
p.173-4 "The "Best Interests" Standard. In another important Massachusetts case, Superintendent of Belchertown State School v. Saikewicz (1977), the court seemed to expand the coverage of the constitutionally protected right-to-die beyond those who were currently incompetent to those who had never been legally competent. Joseph Saikewicz, the principal in this case, had been mentally retarded since birth. But the Massachusetts court hearing the case presumed that those who knew him could reasonably determine what his wishes might be, even though he himself had never been legally competent to make such decisions on his own behalf. Extending the Quinlan rationale to Saikewicz was something of a stretch for the substituted-judgement standard, however, leading the Saikewicz court to introduce the notion that other factors might be considered, including age (Saikewicz was sixty-seven), the pain associated with continued therapy, the chances for therapeutic success, the suffering associated with the continuation of life, and the inability to cooperate with therapy when in a degraded mental state. This move to consideration of other factors broadened the realm of possibilities for those seeking to establish the right to die, and in the process, it laid the groundwork for what would become a second kind of test: the "best interests" standard, a term that was actually not coined until the New Jersey court heard the case of Claire Conroy five years later."
Hoffman M. Use of Advance Directives: A Social Work Perspective on the Myth Versus the Reality. Death Studies 1994, 18:229-241. [supports values histories]
p.229 [on living wills and related documents:] As important as such documents may become in the future, perhaps even more important will be the process individuals go through defining what quality of life means to them by specifying their values and beliefs to their families and physicians before they face a crisis situation.
p.236-237 [uses "continuum model" for enquiring about quality of life.]
Hollinworth H. No Gain? Nursing Times 1994; 90(1):24-27.
p.24 ...research suggests that postoperative pain control is inadequate and has not advanced significantly for many years.
p.24 ...there are many circumstances in which pain experienced by the individual cannot be observed by others.
p.25 ...British nurses found it difficult to cope with patients in pain who were emotionally expressive.
Holt A, Viinikka S. Living wills. Legal Action, April 1994.
The Terrence Higgins Trust devised and launched a living will form in October 1992 in co-operation with the Centre of Medical Law and Ethics at King's College, London. 20,000 copies have now been distributed.
Lord Donaldson set out the conditions which would ensure that a previous refusal of treatment would be legally binding. These are that the patient has full capacity at the time the decision was made; this was not subject to any undue influence; and the patient contemplated the situation which later arose and the consequences of refusing consent.
Clients who are considering making a living will should always be advised to discuss the document with their doctor. This is to ensure that Lord Donaldson's conditions are met and that practicable choices are made.
Holst Lawrence E, Do We Need More Help in Managing our Death? A Look at Physician-Assisted Suicide. The Journal of Pastoral Care, Winter, 1993, 47(4).
Of the 6,000 deaths that occur in the U.S. daily, nearly 80 percent are "medically managed" - that is, they are preceded by explicit decisions to stop or not start life-sustaining treatments.
Hoshino K. Euthanasia: Current Problems in Japan. Cambridge Quarterly of Healthcare Ethics 1993; 2:45-47.
p.45 ...the Nagya High Court on 22 December 1962 established criteria for lawful active euthanasia in Japan. (6 requirements listed)
p.47 In Japan, it is a common and acceptable social custom for the family to make serious medical decisions on behalf of a sick family member even without discussion with the patient or even when their decision overrides the patient's own wishes.
Howard R, Miller D. The persistent vegetative state. British Medical Journal (1995) 310:341-342.
p.342 The BMA has recommended that " if it is apparent at the end of a twelve month period of insentience due to persistent vegetative state that the patient's condition is irreversible doctors will consider whether it is in the patient's best interest to continue with treatment to prolong life ". The findings of the American Multi-Society Task Force challenge these recommendations by suggesting that a persistent vegetative state is almost always permanent at three months if the cause was a non-traumatic cerebral insult.
Humphry D, Wickett A. The Right to Die - Understanding Euthanasia. London: Bodley Head 1986.
the summer of 1969, when Louis Kutner's ground-breaking proposal article, "Due Process of Euthanasia: The Living Will, A Proposal", appeared.
Reviewing...the flaws in American mercy-killing cases, Kutner demonstrated how neither the defendant nor the victim, whose death may have been unwarranted, has sufficient protection. In addition, when a terminal patient HAS requested help in accelerating death, "the current state of the law does not recognize the right of the victim to die if he so desires. He may be in a terminal state suffering from an incurable illness and literally forced to continue a life of pain and despair. Such a denial may well infringe on the individual's right of privacy." QUOTED FROM INDIANA LAW REVIEW, SUMMER 1969:543.
Humphry D. Suicide by Asphyxiation after the Publication of Final Exit. New England Journal of Medicine (Letters, Replies) 1994, 330(14):1017.
p.1017 The plastic bag is getting the same sort of public-relations reputation as the wire coat hanger did in the abortion debate, except the bag is 100 percent effective.
Iglesias, Teresa. Ethics, Brain-death, and the medical concept of the Human Being. MLJI (1995)51-57.
p.54: when a patient is brain-dead, the patient is dead, all spontaneous vital functions have ceased because the brain stem has ceased to function and so the whole brain has ceased to function as well. A patient in a vegetative state, although unconscious, is alive, the vital function of spontaneous breathing is still present, there is no need for ventilation and so the brain-stem is alive and functioning.
Institute of Medical Ethics Working Party on the Ethics of Prolonging Life and Assisting Death. Advance Directives: Partnership and Practicalities. British Journal of General Practice April 1993: 169-171.
p.170 Living Wills and other advance directives appear unable to supply the missing factor which most clearly distinguishes patients who are no longer able to make their own decisions from those who are not. What is missing, essentially, is not a statement of the patient's wishes but the patient as a partner in the process of decision making.
(from the above, however, an argument for proxies is made)
Iserson K. Foregoing Prehospital Care: Should Ambulance Staff Always Resuscitate? Journal of Medical Ethics 1991; 17: 19-24.
Jecker N, Schneiderman L. Is Dying Young Worse than Dying Old? Gerontologist 1994; 34(1):66-72.
p.66 Ethical argument is more than a description of moral feelings or beliefs, but instead involves reflecting critically on competing moral claims in order to clarify their nature and underlying basis of support.
Jecker N, Schneiderman L. Medical Futility: The Duty Not to Treat. Cambridge Quarterly of Healthcare Ethics 1993, 2:151-159. [examines cost containment and different ethical options]
p.151 partly because physicians can "never say never," partly because of the seduction of modern technology, and partly out of misplaced fear of litigation, physicians have increasingly shown a tendency to undertake treatments that have no realistic expectation of success.
p.153 In short, physicians who prescribe treatments that they are reasonably confident will not improve patients' conditions break trust with patients and denigrate the practice of medicine.
p.154 [on CPR] Ribs can be broken, the trachea damaged, and not uncommonly the brain never completely recovers from oxygen deprivation.
Jeffrey D. Active Euthanasia - Time for a Decision. British Journal of General Practice March 1994; 136-138.
p.137 Living wills have no legal force in the United Kingdom...
Jeffrey D. Saying Goodbye in a Good Way: Observations on Palliative Care in the Netherlands. Proceedings of the Royal College of physicians, Edinburgh 1996;26:216-223.
Jennett B. Treatment of Critical Illness in the Elderly. Hastings Center Report, September- October 1994, p.21-22.
p.21 An editorial in the New England Journal of Medicine recently claimed that "the very high suicide rate in older Americans is due partly to concern that they may be unable to stop treatment if hospitalized. Some people now fear living more than dying, because they dread becoming prisoners of technology.
p.21 ...doctors need to guard against withholding treatment on too ready an assumption that patients would not consider some limited relief of symptoms and extension of life as worthwhile, because the perceptions and aspirations of the elderly themselves may differ from those of younger people, including their doctors and families.
Jennett Bryan, Dyer Clare, Persistent vegetative state and the right to die: the United States and Britain. British Medical Journal, 302, 25 May 1991:1256-1258.
p.1256. Patients in a persistent vegetative state spend long periods with their eyes open but have no voluntary activity or meaningful response to the environment. Their spastic limbs can withdraw reflexly from painful stimuli, the face may grimace, the eyes may briefly turn to light or sound, and groans and cries may occur.
p.1256. In a well documented series no patient who was still in a vegetative state three months after injury became independent subsequently; the few who regained consciousness remained very severely physically and mentally disabled and dependent. Of patients in a vegetative state three months after injury, about half die by 12 months but more than half of those still alive at one year live for three years or more, some surviving for 12, 15, 18 and 36 years.
p.1256. Because such patients have lost the mechanisms by which they can experience distress the burdens of prolonged survival therefore fall on their families and friends, who have to witness its indignities.
p.1256. However, the reasons that usually justify withdrawal of life-sustaining measures do not apply because vegetative patients are neither suffering nor terminally ill, nor can they refuse treatment.
p.1258. The difficulty with patients in a persistent vegetative state is that to them life and death are the same, making it difficult to argue that death is in their best interest.
Jochemsen, H. Euthanasia in Holland: an ethical critique of the new law. Journal of medical ethics (1994) 20:212-217.
p.212: The finding that 9,000 requests for euthanasia led to 'only' 2,300 cases of euthanasia can be interpreted in different ways. On the one hand it shows indeed that in the Netherlands physicians are not terminating patients' lives just on demand, if anyone ever believed that. But it also means that the request of the patient is not in practice the basis on which the physicians decide to perform euthanasia, but rather they base such decisions on the condition of the patient. This is supported by the finding that 1,000 people actually had their lives terminated without an explicit request.
p.212: [I]t is basically the condition of the patient, not the request, which is the real ground for euthanasia in many cases.
Johnston S, Pfeifer M, McNutt R. The Discussion About Advance Directives. Archives of Internal Medicine (1995) 155:1025-1030. [883 subjects in study]
We defined a discrepancy between the preferences of primary care patients and physicians regarding the timing of the discussion about advance directives. We propose physician education regarding patient preferences as the most effective way to accomplish the goal of improving the frequency and quality of discussions about advance directives.
Jones L. A right to die? Intensive and Critical Care Nursing (1994) 10, 278-288.
p.280 The use of 'blanket decisions', for example not to resuscitate anyone over the age of 80 or anyone with a known tumour, is inappropriate and contrary to the duty set out in re: F (1989), to act in the patient's best interests.
Justins D. Hospital pain clinics - an invaluable resource. Practitioner April 1994, 238:278-282.
Kah Leng Ter, Leong Huey Susanna, Advance Medical Directives in Singapore. Medical Law Review, Spring 1997, 5(1):63-101.
p.63. It is only right that medical technology should be subordinated to the free will of human beings; and not the other way around.
p.67. In relation to concerns about whether AMDs cover patients in a "persistent vegetative state (PVS)", the [Select Committee on the Advance Medical Directive Bill] said that "PVS" is not necessarily a terminal illness, hence it falls outside the scope of the Bill.
p.69. ...limitations are imposed on the operation of AMDs. It is a prerequisite that the patient must be terminally ill and incompetent and require extraordinary life-sustaining treatment before an AMD can come into operation.
p.69. ...anyone coercing or compelling another person to make an AMD is criminally liable.
p.70. ...even when an AMD operates to discontinue life-sustaining treatment, the patient will continue to receive palliative care for the relief of pain, suffering or discomfort and the reasonable provision of food and water.
p.71. Terminal illness is defined as an incurable condition caused by injury or disease from which there is no reasonable prospect of a temporary or permanent recovery where death would within reasonable medical judgement be imminent regardless of the application of extraordinary life-sustaining treatment and the application of such treatment would only serve to postpone the moment of death of the patient.
p.72. AIDS sufferers may be excluded since death usually results from secondary infection or other complication. Also excluded from the implementation of an AMD are patients who are not diagnosed as terminally ill but who are aged, in a coma or suffer from senile dementia.
p.73. Extraordinary life-sustaining treatment is defined as any medical procedure or measure which, when administered to a terminally ill patient, will only prolong the process of dying when death is imminent, but excludes palliative care. Examples are ventilators to take over natural breathing or cardiopulmonary resuscitation to keep the heart beating where such treatment would only serve to postpone the moment of death.
p.75. The directive must be made on a prescribed form which is in simple language. Making an AMD is free of charge.
p.75. The AMD must be filed in a central registry.
p.76. An AMD may be revoked in the following way:
At any time, orally or in writing.
One witness is required.
The central registry must be informed of the revocation.
p.78. The validity of an AMD which is not in the prescribed form is doubted.
p.79. The medical practitioner responsible for the patient may make a search [for an AMD] only when the patient is suffering from a terminal illness; requires extraordinary life-sustaining treatment and is no longer conscious and able to exercise rational judgement.
p.80. If it has been agreed upon that the patient is terminally ill, the National Medical Ethics Committee recommended that doctors should still, in practice, obtain the support of family members to act upon the directive.
p.81. Where it is certified that the patient is pregnant with a foetus which will probably develop to the point of live birth, extraordinary life-sustaining treatment shall not be withdrawn so long as the foetus will probably develop to live birth with continued application of that treatment.
p.81. Where a directive is made as a condition for being insured or receiving medical or health-care services, the condition is void in relation to insurance and presumably in relation to medical services.
p.82. ...the withholding or withdrawal of life-sustaining treatment from a terminally ill patient shall not be regarded as the cause of death for legal purposes if this is done in compliance with the directive.
p.83. Although no penalty is imposed for non-compliance with a directive, it is questionable whether it is an instance of professional misconduct. However, anything that is done in disregard of an AMD will be unlawful and will amount to the tort of trespass or the crime of battery. ...if a doctor is not willing to carry out the AMD, he is obliged to transfer the case to another doctor.
p.83. A person who has not made a directive will have to rely on the common law to determine his rights.
p.88. If the education of doctors, patients and the public is not enhanced to keep pace with legislative advancements, then the Advance Medical Directive Act may well become a dead letter and AMDs be allowed to die a natural death.
Kamisar Y. Are Laws Against Assisted Suicide Unconstitutional? Hastings Center Report 1993; 23(3): 32-41.
p.33 Many proponents of the "right to die" are quick to point out that the "sanctity of life" is not an absolute or unqualified value (and they are right), but they are slow to realize that the same is true of the "right to die."
Kane F. Keeping Elizabeth Bouvia Alive for the Public Good. Hastings Center Report 1985 Dec: 5-8.
Kaplan N. Health Care Agent's Authority Nullified by Living Will that Forgot to Mention Reversible, Secondary Conditions. National Academy of Elder Law Attorneys Quarterly 1992 Fall; 3-5.
p.3 The hospital countered that the document didn't apply to current circumstances: contrary to the Living Will provisions, there were reasonable expectations of recovery. It further argued that the phrase "meaningful quality of life" was ambiguous...
p.4 The Court also rejected the argument that Wirth could not recover "a meaning quality of life," calling that standard "amorphous" and refusing to resolve it by "speculating."
p.4 ...a Living Will should not be permitted to play any role in opposing the decision of an acting agent. It should be accessible to and usable by the agent only in cases where it will support the agent's decision.
p.4 The document appointing the agent - Proxy or Medical Power of Attorney - should be separate from a Living Will and include no more than is necessary to grant all desired powers to the agent.
p.4 ...drafting attorneys must provide explicitly in all Living Wills for withholding treatment of reversible, secondary conditions when an irreversible, primary condition meets the standard set by the principal for withholding life-sustaining treatment.
Karlson E, Daltroy L, et al. Gender Differences in Patient Preferences May Underlie Differential Utilization of Elective Surgery. American Journal of Medicine 1997; 102: 524-530.
p.524 Recent studies show that women tend to receive fewer costly health interventions than men.
p.528 Women were more skeptical and fearful than men regarding surgery and more distrustful of the surgeon. Although reasons were not given, we can speculate that women in general may be exposed to more negative outcome examples through their generally more frequent use of the medical care system and wider use of social networks to exchange information.
p.529 We demonstrate broad, deep cultural differences between men and women even within a relatively homogeneous, well-educated group, which suggests that men and women of similar social circumstances have strikingly different experiences. For example, most physicians are men and may not communicate as well with women as with men patients or may not understand that women have multiple roles at work and at home; thus some women might legitimately distrust clinicians.
Kass L. Is There a Right to Die? Hastings Center Report 1993 Jan-Feb: 34-43.
Keenan J. Living Wills. Tablet 17 September 1994; 1157-1159. [A priest who is associate professor at the Weston Jesuit School of Theology in Cambridge, Mass., commends for Christians too the practice of making out a "living will".
p.1157 In the United States, many of the patients whose cases provided precedents for the removal of life support were Roman Catholics: Karen Ann Quinlan, Brother Fox, Nancy Cruzan.
p.1157 It is evident also that American Roman Catholics are disposed to making living wills and to appoint proxy decision-makers with responsibility for determining whether health care should be maintained Many religious orders in the United States invite (in some cases require) their members to consider a living will of some kind.
Keizer B. Dancing with Mr D - Notes on life and death. London: Doubleday 1996.
P.13 Often it's impossible to sit for long with a dying person, especially when the great vanishing trick is being performed behind a screen of morphine.
Kellogg F, Crain M, Corwin J, Brickner P. Life-Sustaining Interventions in Frail Elderly Persons - Talking About Choices. Archives of Internal Medicine 1992; 152: 2317-2320.
p.2319 We found that open consideration of critical care choices was welcomed by nearly all of this sample of homebound elderly, chronically ill persons and that it did not result in depression or despair.
Kennedy I. (1988) Treat Me Right - Essays in Medical Law and Ethics. Oxford: OUP.
p.326 "It is, however, a fine line between aiding suicide and making available, for example, certain drugs to relieve pain which, if more than a certain dosage is taken, will cause death. A court would, I submit, be slow to find liable a doctor who merely facilitated the self-determination of someone unable through illness to help himself."
p.329 "The Enduring Powers of Attorney Act 1985, although extending powers beyond the onset of incompetence does not cover decisions concerning the grantor's person, which would include treatment, but appears to relate only to the management of his property."
Kennedy I., Grubb A. (1994), Medical Law, Text With Materials 2nd edition. London: Butterworths.
(contains the Kings College/Terrence Higgins Trust Living Will document at pp.1365-1368)
(Kennedy, I and Grubb, A) United Kingdom. Incompetent Patient (PVS): Withdrawal of Feeding and Compliance with RCP Guidelines. Medical Law Review, 5(2), Summer 1997:225-227
p.226 In Re D, the patient did not wholly satisfy the RCP's 'clinical criteria' for the vegetative state. In particular, she was able to track objects with her eyes, exhibit a 'menace' response and nystagmus occurred in response to ice water calories.
p.226 So was the patient in PVS? All the experts - and they were distinguished and experienced experts - who gave evidence before the judge said she was.
p.226 ...it is important to remember that the RCP document sets out "guidelines" and no more. The courts must, in each case, consider the evidence before it and reach a determination of whether this patient is vegetative and it is permanent.
p.226 It is clear - and Re D affirms this - that the diagnosis of PVS is very much 'an art and not a science', requiring clinical experience and persistence in observation to avoid mistakes..
p.227 ...a definitive account of the condition containing objective and deductively conclusive criteria is simply too much to expect.
p.227 In Re D, Stephen Brown P. observed that a court could not permit withdrawal of life-sustaining interventions "where there was any real possibility of meaningful life continuing to exist." Precisely what this means and how it should be applied is unclear but it is difficult not to equate it with some kind of assessment of the patient's 'quality of life'.
Kennedy I. The Upjohn Lecture. 25th April 1994 at the Royal Society. 1-4.
p.4 All I mean is that the doctor's conduct be so described that it may be subsumed within the range of conducts which are already permitted by law. Put shortly, the courts should decide as follows: that, in certain specified and carefully defined circumstances, the concept of treating a patient for dying, already well recognised by the law in the context, for example, of the severely handicapped child, should extend to the administration of that which in the context of doctor-assisted suicide will kill the patient.
Keown J(ed). Euthanasia examined - Ethical. clinical and legal perspectives. Cambridge University Press 1995.
Keown, Damien; Keown, John. Killing, karma and caring: euthanasia in Buddhism and Christianity. Journal of medical ethics (1995) 21: 265-269.
p.266: Despite its highly sophisticated psychology Buddhism makes no attempt to distinguish certain faculties as indicators of moral personhood....Individual life in any one existence begins at conception and ends at death: in the interval between the subject is entitled to full moral respect regardless of the stage of psycho-physical development attained or the mental capacities enjoyed.
p.266: As an act or omission involving the intentional destruction of life...it [euthanasia] would undoubtedly be prohibited by Buddhist precepts.
p.267: It would therefore appear immoral from a Buddhist perspective to embark on any course of action whose aim is the destruction of human life, regardless of the agent's motive.
p.267: Buddhism is only too aware of the fragile and transitory nature of life, but as individual life is a continuum which constantly re-manifests itself buddhism does not seek to prolong it by artificial means simply because it is technologically possible. There is accordingly no requirement to carry out futile or unduly burdensome treatments, such as resuscitating the dying.
p.268: [D]espite the widely different cultural background and theological presuppositions informing both religious traditions, there is a striking similarity in their opposition to the intentional killing of patients....[T]his opposition is not coincidental but derives from their shared rejection of consequentialist reasoning in favour of an ethical approach grounded in a respect for human life as a basic as opposed to an instrumental good....[T]he remarkable consensus between these major but disparate religious traditions calls into question prevalent assumptions about the impossibility of moral consensus in the modern world.
Kuhse, Helga; Singer, Peter. The quality/quantity-of-life distinction and its moral importance for nurses. Int.J.Nurs.Stud.(1989)26(3):203-212.
p.211: If nurses see their primary obligation as acting in the patients' best interests, they cannot avoid thinking about the quality/quantity-of-life distinction; about the different interests possessed by different categories of patients - permanently comatose patients, infants and other incompetent patients, and patients who can competently make medical decisions for themselves - and about such distinctions as that between directly ending a patient's life and merely standing by whilst nature takes her sometimes cruel course.
Kielstein R, Sass H. Using Stories to Assess Values and Establish Medical Directives. Kennedy Institute of Ethics Journal 1993, 3(3):303-325. [good examples of scenarios for developing values]
p.303 We recognize three stages in the development of advance directive forms in the United States: (1) the legal phase, which focused on the technicalities of constitutional and penal law regarding privacy and professional conduct; (2) the checklist phase, which involved the development of instruments, primary lists, for assessing patients' values and preferences and integrating them into advance directives; and (3) the story phase, which uses stories to develop value profiles and to integrate them into proxy decision making.
p.304 The first phase, the legal, is characterized by physicians, lawyers, and families fighting with one another about who has the authority to determine a patient's "best interest" or to interpret a formerly competent patient's "preferences" for medical treatment.
p.305 The second phase in the evolution of advance directives is based on the argument that advance directives should be rooted in a person's set of value preferences and that these value statements should be interpreted by proxy agents rather than being embedded in legal rhetoric that is drafted by lawyers and targeted toward legal experts and courts.
p.304 The first phase, the legal, is characterized by physicians, lawyers, and families fighting with one another about who has the authority to determine a patient's "best interest" or to interpret a formerly competent patient's "preferences" for medical treatment.
p.305 The second phase in the evolution of advance directives is based on the argument that advance directives should be rooted in a person's set of value preferences and that these value statements should be interpreted by proxy agents rather than being embedded in legal rhetoric that is drafted by lawyers and targeted toward legal experts and courts.
p.310 After a brief introduction, which makes extensive use of the language of narrative so that readers will begin to think of their lives s ongoing stories, we ask the readers for personal recollections of their own experiences with suffering and dying. This information helps in assessing a patient's previous experience with and exposure to terminal illness and may play an important role interpreting the patient's responses to the stories and value statements that follow.
p.313: "Many clinicians, lawyers and ethicists believe that traditional advance directive forms are largely ineffective in providing sufficient information on values, preferences, and guidance for medical intervention. Story-based value assessments and directives and other narrative methods that employ the development, evaluation, and integration of stories into a person's own life story are an alternative to traditional directives. Since story-based assessments and directives do not provide ready-made recipes for medical intervention, they challenge good clinical practice to integrate value assessment with medical assessment and improved physician-patient interaction into on-going stories of cure and care."
Kimsma G, Leeuwen E. Dutch Euthanasia: Background, Practice, and Present Justifications. Cambridge Quarterly of Healthcare Ethics 1993; 2:19-35.
p.22 In 1972... the Dutch Reformed Church published a pastoral writing in which voluntary euthanasia was conditionally accepted as a humane way of dying.
p.23 The Dutch healthcare system, unlike that of other countries, provides care for all citizens at a highly advanced level, without exceptions.
p.23 Most people in the Netherlands die at home, being cared for by their general practitioner.
p.23 To investigate the practical matters of numbers and extent, in 1990 the government installed the Commission on the Study of Medical Practice Concerning Euthanasia: the Remmelink Commission.
p.24 Some adjectives used to designate a distinction, for example the terms active/passive and direct/indirect, are considered to be confusing and are left behind as "stations passed."
p.24 Euthanasia has come to be defined as "Intentionally taking the life of a person upon his or her explicit request by someone else than the person concerned."
p.24 Within the law, the difference between acting and refraining from acting has no particular relevance, and this consideration took precedence over the psychological experience of the difference. Passive euthanasia is self-contradictory because it concerns the omission of a treatment to which the patient has not consented.
p.33 (Commentary Thomasma D pp31-33) The Dutch, unlike Americans, do not practice general medicine as strangers to patients and their values. They are able to construct a value history for the patients who request euthanasia at the end of their lives.
Kirby M. Patients' rights - why the Australian courts have rejected 'Bolam.' Journal of medical ethics 1995; 21: 5-8.
p.6 Responsible medical judgement may, indeed, provide the law with an acceptable standard in determining whether a doctor in diagnosis or treatment has complied with his duty. But is it right that medical judgement should determine whether there exists a duty to warn of risk and its scope?
p.6 'It is not the law that if all or most of the medical practitioners in Sydney habitually fail to take an available precaution to avoid foreseeable risk of injury to the patients then none can be found guilty of negligence.' quoting Albrighton v Royal Prince Alfred Hospital, (1980) 2 NSWLR 542 (CA), 562.
Komesaroff P, Lickiss J, Parker M. Ashby M. The Euthanasia Controversy: Decision-making in extreme cases. Medical Journal of Australia 1995; 162:594-597.
Kottow M. Euthanasia After the Holocaust - Is It Possible?: A Report from the Federal Republic of Germany. Bioethics 1988; 2(1):58-69. (Note: for further report on HACKETHAL and pictures see: VESV Report No.46, August 1984)
p.63 ...German penal codes, in contradistinction to American law, consider motive in the evaluation of culpability, thus allowing for leniency in spite of the basic rigidity of the law.
p.65 In his private clinic, Hackethal provided a lethal dose of cyanide to an old lady with a massive destruction of her face due to cancer. She had been a long-time patient of his and had explicitly asked to be assisted in ending her life. After the death of the patient, Hackethal publicised the case in numerous press and TV interviews which were followed by his prosecution. The case was later dismissed as abetment of suicide, an action not punishable under German law. This verdict must be seen as a typical instance of current uneasiness in regard to the euthanasia issue: presumed to have been motivated by compassion, Hackethal was exonerated from the charge of practising illegal euthanasia. On the other hand, judgement is issued with the clear understanding that no legal facilitation of mercy killing is intended, and that cases like the present one do not constitute a precedent of any kind. Recently, Hackethal filed a request with the state attorney, and subsequently with the constitutional (supreme) court, to be allowed to offer death assistance to a young woman who is quadriplegic, suffers from extreme pain and wishes to die but is bodily unable to commit suicide. Hackethal's request was denied and unleashed a flood of criticism from medical and ecclesiastical officials. Incidentally, recourse to abetment of suicide can hardly be seen as a reliable legal loophole, for the prosecution may easily shift the emphasis from suicide to manslaughter and thus lead to a verdict of guilty. Both current legislation and well-meant reform efforts have tried to reduce the vulnerability of abetment but, since at the time suicide is progressively being considered less a free decision and more one of reduced mental incompetence, abetment loses its protective function as it can only be exculpatory when the suicidal individual is a fully competent adult. Because suicidal intentions are always to be considered pathological, a recent textbook on medical ethics justifies brief involuntary commitments in psychiatric clinics for suicide-prone individuals.
Krynski M, Tymchuk A, Ouslander J. How Informed Can Consent Be? New Light on Comprehension Among Elderly People Making Decisions About Enteral Tube Feeding. Gerontologist 1994; 34(1) 36-43.
p.36 As more and more of our population live into extreme old age and suffer from cognitive and functional disabilities that impair their ability to eat without assistance, decisions about enteral feeding and other medical treatments will assume greater importance.
Kuczewski M. Whose Will Is It, Anyway? A Discussion of Advance Directives, Personal Identity, and Consensus in Medical Ethics. Bioethics (1994) 8(1):27-48.
p.37 It is not empirically obvious why interests in dignity, the financial well-being of one's family, bodily integrity, and so on, should be said to survive and be applicable to a person who either no longer exists or cannot cognize and presently appreciate these values. Although present practices regarding the use of living wills may go on despite the failure to justify their employment philosophically, such failure would mean that the consensus was forged on a fictitious account of self-determination. Thus, those who argued in the pre-consensus years for the primacy of the best interest standard as the sole standard of decision making would actually be correct.
p.39 ...Buchanan and Brock favour interpreting living wills as embodiments of acts of will rather than evidence of preferences in order to make it more likely that the living wills will actually be employed and given a substantial role in the decision-making process.
p.42 We must make it clear what it means to say that interests "survive." ... They survive in the memories, both personal and institutional, of the community.
p.42 I currently remember other people and have an interest in how others remember me in the future. It is this social meaning of interests that best accounts for their survival.
p.43-44 ...we can also make sense of the fact that patients express more confidence in their designated proxy decision maker than seems warranted by current research. The patient's confidence may not be based on the ability of the proxy to give the same answer regarding a treatment choice as the patient would presently give, but rather, the patient is expressing a trust that the proxy can take the patient's character into account and deliberate in a way that will discover a plan of action that generally accords with the patient's values. Thus, the patient's interests, values, and to some degree, personhood, survive in the deliberative process of the proxy.
p.47-48 The narrative understanding of the relation between self and society, on the one hand, substantiates applying living wills based upon self-determination.
Kuhse H, Euthanasia - again - "Letting die" is not in the patient's best interests: a case for active euthanasia. The Medical Journal of Australia, May 27 1985, 142:610-613.
p.611. The mere statement of people's intuitions - often the unexamined products of up-bringing, ideologies and religions - will not advance the debate on euthanasia or, for that matter, any other moral debate. Rather, what we will witness would be an increasingly shrill battle of assertions with counterassertions.
p.613. ...if it is in a patient's best interests to have his or her life sustained, what does it matter whether a readily available means is "extraordinary" rather than "ordinary"?
Kuhse H. The Case for Active Voluntary Euthanasia. Law Medicine & Health Care 1986; 14(3-4):145-148.
The question is whether a patient can rationally choose an earlier death over a later one, and that choice is made in either case. Hence, if a patient can rationally choose passive euthanasia, she must also be able to rationally choose active euthanasia.
Kushner T. Derek Humphry Discusses Death with Dignity with Thomasine Kushner. Cambridge Quarterly of Healthcare Ethics 1993; 2:57-61.
Kutner L. Due Process of Euthanasia: The Living Will, A Proposal. Indiana Law Journal 539 (1969):539-554.
p.554 "...the patient's living will adjudicated by a court and buttressed by medical and lay testimony and evidence, can create the affirmative inaction termination of a patient's life. this can be resorted to in instances where the hospital board on euthanasia may decline to assume the responsibility."
Lamb D. Autonomy and the Refusal of Life-Prolonging Therapy. Res Publica (1995) 1(2):147-162.
Lambert P, Gibson J, Nathanson P. The Values History: An Innovation in Surrogate Medical Decision-Making. Law, Medicine & Health Care 1990, 18(3):202-212.
p.210 Perhaps most dismaying are studies finding that potential surrogate decision-makers often are unable to predict the preferences of their principal. This lack of knowledge bodes poorly for the surrogate decision-maker's ability to exercise accurate substituted judgement. It was against this backdrop of unexpressed and misunderstood desires that the Values History Project was conceived at the Institute of Public Law in 1988.
p.210 While the Institute recommends that traditional advance directives be completed, if appropriate, in conjunction with the Values History, the potential use of the Values History extends beyond the legal limit posed by advance directives.
p.210 The Values History approaches the topic differently than advance directives: instead of asking a person what medical decisions she or he wants made in the event of decisional incapacity, the questions focus on the premises and processes the person uses, and would like used, when deciding om medical treatment. What seems to have been overlooked until now is the recognition that advance directives are syllogisms that ask for medical conclusions. One premise is a not-yet-existent future medical condition or event; the conclusion is the treatment the person does or does not want, at least given today's range of possible options. What is lacking in the syllogism is the other important universal premise: the values that underlie and inform any such decision.
p.211 While we cannot predict our future, we can at least explain ourselves now. The explanation may help ensure that the person we are, and hope to be, is respected by others who must stand in our stead.
p.211 [criticizing Emanuel & Emanuel's Medical Directive:] While comprehensive in its scenarios and treatment options, the Medical Directive, like all advance directives, asks for answers that are based on unexpressed values.
Latimer E. Ethical Decision-Making in the Care of the Dying and Its Applications to Clinical Practice. Journal of Pain and Symptom Management 1991; 6(5):329-336.
Law Commission. Consultation Paper No 129, Mentally Incapacitated Adults and Decision-Making - Medical Treatment and Research. London: HMSO 1993.
Lee M, Ganzini L. The Effect of Recovery From Depression on Preferences for Life-Sustaining Therapy in Older Patients. Journal of Gerontology 1994; 49(1):M15-M21.
M15.Refusal of life-sustaining therapy by a medically ill depressed older patient creates a dilemma for the clinician. It is difficult to know whether treatment refusal in this setting represents a transient wish to die, influenced by depression, or whether it is an authentic reflection of the patient's will.
M15.This study demonstrated that treatment of mild-to-moderate depression does not necessarily result in an increased desire for life-sustaining medical therapy. Because depressed patients exhibit less consistency in their preferences over time, we advise careful and repeated discussions with the depressed patient regarding these decisions.
M.15 Preferences did not change significantly from initial to final interview, regardless of whether subjects had recovered from depression or remained depressed. With the exception on cardiopulmonary resuscitation, however, control subjects' preferences were more stable than depressed subjects' choices.
Leonard-Taitz J. Euthanasia, The Right to Die and the Law in South Africa. Medicine and Law 1992; 11:597-610.
Libbus M, Russell C. Congruence of Decisions Between Patients and Their Potential Surrogates About Life Sustaining Therapies. Journal of Nursing Scholarship (1995) 27(2): 135-140.
[30 pairs using Zweibel and Cassel scenarios q.v.]
p.135 Patients and surrogates made similar decisions on all treatments except cancer chemotherapy, for which surrogates were significantly more likely to choose treatment when patients would have them refuse.
Lo B. Behind Closed Doors - promises and Pitfalls of Ethics Committees. New England Journal of Medicine 1987; 317(1): 46-50.
Lo B. Improving Care Near the End of Life - Why Is It So Hard? Journal of the American Medical Association 1995; 274(20):1834-1836.
Editorial on SUPPORT Principal Investigators: A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients.
p.1835 The SUPPORT nurses failed to increase discussions between physicians and patients.
p.1835 Assessments of the patient's pain were not provided routinely to the attending physician. Apparently no component of the SUPPORT intervention directly addressed the problem of inadequate pain control.
p.1835-1836 ...merely providing information does not change physician behaviour. Recommendations by consultants in the medical record are often not followed. Providing physicians information about new drugs, vaccines, and practice guidelines does not alter their practice.
p.1836 In retrospect, was it wise to expect to improve care at the end of life without changing the organization and culture of the hospital? Such changes might include conferences on decisions near the end of life, case management meetings regarding individual patients, individual feedback to physicians on their performance, and recognition for clinicians who provide outstanding care at the end of life.
p.1836 Physicians who are local opinion leaders can catalyze colleagues to adopt new clinical practices. A respected senior physician might organize seminars on how to discuss prognosis with patients, elicit their concerns and preferences for care, and negotiate a mutually acceptable plan of care. A physician respected for communication skills could offer to accompany physicians when they discuss patients' decisions about life-sustaining interventions. this "consultant" could help the attending physician address patients' concerns and correct misunderstandings. Respected physicians may have more impact on physician-patient communication than skilled nurses because some physicians may have difficulty accepting suggestions from nurses regarding life-sustaining interventions.
p.1836 Rather than rejecting the ideal of patient autonomy, physicians and hospitals might redouble efforts to make informed consent a reality.
p.1836 Currently physicians receive little practical training on talking to patients about life-sustaining interventions. Residents rarely watch senior physicians hold such conversations and are seldom observed by experienced physicians. More direct supervision and feedback would likely improve these discussions.
Loewy E. Compassion, Reason, and Moral Judgement. Cambridge Quarterly of Healthcare Ethics (1995) 4: 466-475.
p.466 ...compassion is a sentiment that, although it needs to be controlled by reason, ought to be fostered and cherished. A natural trait is ethically neutral. It can, however, serve to make us aware of and concerned about moral problems and their impact on others.
Loewy E. Physicians, Friendship, and Moral Strangers: An Examination of a Relationship. Cambridge Quarterly of Healthcare Ethics 1994; 3(1):52-59.
p.58 Orchestrating death, no less than where possible preventing or delaying it, can be a form of healing.
Loewy E. Advance Directives and Surrogate Laws - Ethical Instruments or Moral Cop-Out? Archives of Internal Medicine 1992 Oct; 152: 1973-1976.
all of us want to exercise control over our own destiny and want to have a chance to finish our own "work of art" in our own way.
On the whole, advance directives...by producing some order in a legally chaotic situation, give some legal protection to physicians and hospitals. Giving such protection, if the shield of protection is used wisely and responsibly, may be an ethically good thing. It may, on the one hand, encourage physician communication and enable patient choice; but, on the other hand, the protection given by this law may be used by institutions and physicians to distance themselves all too easily from a particular patient's particular situation by taking refuge in a generic rule. Medicine does not want to throw out the baby of genuine and ethical caring with the bathwater of physician paternalism.
Advance directives can help bring about situations in which a dialogue between physician and patient is improved, or they can bring about a situation in which physicians and health care institutions abrogate their responsibility and justify this abrogation by a mere obeisance to the concept of autonomy.
Ventilators, after all, can be used temporarily (as in anesthesia or to tide a patient over a bout of severe pneumonia) or permanently (as when a patient with chronic lung disease finally becomes and permanently ventilator dependent), or they can, and quite properly so, be used as a comfort measure.
Logue B. Last Rights: Death Control and the Elderly in America. Oxford: Maxwell Macmillan 1993.
p158-159 In theory, advance directives can ... offer patients autonomy in terminal-care decisions, a chance to avoid expensive, invasive, and futile procedures, and the possibility of a more acceptable death.
p.160 Many people believe that by signing a living will they can avoid "medical torment of all sorts". But the facts are at variance with this common belief.
p.160 ...the degree of foresight required by those who sign is quite unrealistic; no matter what contingencies are foreseen, the crisis that materializes may be far different from those that were envisioned.
QUOTES MANY CASES OF LIVING WILLS AND PROXIES BEING IGNORED pp160-163
p.162 (Often advance directives are)...too vague to be adequate guides to the patient's wishes.
p.163 As one critical care nurse put it, the agent must act as a "bodyguard".
p.165 The bottom line is that often strangers - the medical personnel who happen to be on duty at the critical time - will make the crucial choices.
p.166 There is undeniably scope for professional intervention in devising advance directives, and professional cooperation is essential if they are to be implemented.
Even when their knowledge is adequate, patients and their caregiving relatives may hesitate to question, let alone challenge, the doctor's opinion because they fear his anger, rejection, or even abandonment.
Logue B. When Hospice Fails: The Limits of Palliative Care. OMEGA (1994) 29(4); 291- 301.
p.292 Although unmanageable patients may indeed be rare in hospice experience, this is largely attributable to the fact that patients are highly selected for their likelihood to benefit from hospice's specialized services. That is, those who are unmanageable or likely to become unmanageable are seldom considered good candidates for hospice. Moreover, the selection process works both ways: patients who select hospice tend to be those who find its goals compatible with their own.
p.292 Hospice cannot accommodate all the old, incurably ill, and dying patients who might conceivably benefit from palliative care. Over two million deaths occur each year in the United States, whereas hospice programs collectively serve only about 200,000 patients annually.
p.294 Undoubtedly, some patients and families are quite satisfied with the hospice choice. But, on average, hospice patients are no more satisfied with their medical and nursing care than patients in other care settings.
p.294 That some are pleased with hospice services...does not conclusively demonstrate the desirability of that regimen for every patient. Nor does the existence of satisfied patients allow us to conclude that other alternatives, such as physician-assisted suicide, might not be deemed more desirable than palliation were that to be offered.
p.295 A good death...is under the dying person's control and gives that person time to settle debts and fulfil obligations. Achieving "closure" is important. The term refers to settling differences, healing wounds, and closing gaps in human relationships. Closure is difficult or impossible when the timing of death is uncertain or when the patient is too physically frail or mentally impaired. To most people, a death without closure is a bad death.
p.299 Palliative care may well be the best choice for some. But it should not be the only alternative. Medical realities and the alleviation of pointless suffering necessitate that policymakers consider options consistent with patient autonomy and the right to die.
Louis R. Passive Taboos. Nursing Times 1992 888(45):37-39.
p.39 The role reversal, from 'life-saver' to watching the patient die, is psychologically dramatic and could lead to feelings of inadequacy, frustration and self-doubt.
Lowy C. The Doctrine of Substituted Judgement in Medical Decision Making. Bioethics 1988; 2(1):15-21.
Lush D. (1993), 'A Living Will Precedent', Exchange on Ageing Law and Ethics, 3(2):4-7.
Lush D. (1993), 'Drafting a Living Will', Exchange on Ageing Law and Ethics, 2(2):4-9.
Lush D. (1993), 'History of Living Wills', Exchange on Ageing Law and Ethics, 1(2):4-8.
p.7 In April 1985 Indiana passed the 27th Living Will statute, the Living Wills and Life-Prolonging Procedures Act. This Act broke new ground by providing not only a model form of Living Will but also a "Life Prolonging Procedures Declaration", which the sponsors had included in order to win the support of the Roman Catholic Church in Indiana.
p.9 Since the 1979 General Election individualism ("I matter most") has become a dominant theme in Conservative political thinking, culminating in a series of Charters for this and Charters for that. Perhaps now is the right time to consider a charter for the terminally ill and permanently incapacitated.
Lush D. (1993), 'The Purposes of a Living Will', Exchange on Ageing Law and Ethics, 1(6):4-8.
Lush D. Living Wills. Law Society's Gazette 22 March 1989, 12:21-25.
p.21 In the last 20 years or so the name 'living will' has acquired sufficient currency to merit its inclusion in Webster's New World dictionary, second college edition (1986), p.828.
p.22 Dr Charles Killick Millard (1870 to 1952) was medical officer of health for the City of Leicester from 1901 to 1935. In 1931 he drafted the Voluntary Euthanasia Legislation Bill. It did not propose advance directives as such, but set out the bureaucratic machinery for obtaining a 'euthanasia permit'.
p.22 In 1979 the VES adopted a more aggressive approach along with a punchy new name: EXIT. It reverted to its original, more innocuous title in 1983 following a bout of adverse publicity, details of which can be found in the case reports of R v Reed [1982] Crim LR 819, and A-G v Able [1984] 1 All ER 277.
p.25 Many of the US laws contain ambiguous language, and many have limited applicability. The forms of living will currently being distributed in Britain are generally more equivocal in their wording, of no legal effect, and of doubtful moral cogency.
Lynne J, Teno J. After the Patient Self-Determination Act - The Need for Empirical Research on Formal Advance Directives. Hastings Center Report 1993 Jan-Feb; 20-24.
p.21 A flurry of articles has documented that surrogates (next of kin, usually) err substantially in predicting patient preferences.
p.23 If patients' preferences are quite unstable, then carrying them forward into incompetence is unjustified.
Maas P., Delden J., Pijnenborg L. (1992) 'Euthanasia and Other Medical Decisions Concerning the End of Life - An Investigation performed upon the request of the Commission of Inquiry into the Medical Practice concerning Euthanasia', Health Policy (Special Issue), 22(1+2), Amsterdam: Elsevier.
Maas P, Delden J, Pijnenborg L, Looman C. Euthanasia and other Medical Decisions Concerning the End of Life. Lancet 1991, 338:669-674.
p.669 Euthanasia by administering lethal drugs at the patient's request seems to have been done in 1.8% of all deaths.
Marks R, Sachar E. Undertreatment of Medical Inpatients with Narcotic Analgesics. Annals of Internal Medicine 1973; 78: 173-181.
(study of inadequate pain relief)
No patient should ever wish for death because of his physician's reluctance to use adequate amounts of potent narcotics
Markson L, Fanale J, Steel K et al. Implementing Advance Directives in the Primary Care Setting. Archives of Internal Medicine (1994) 154:2321-2327.
p.2321 Teaching physicians about the law is not sufficient to change behaviour; physicians also need practical experience discussing directives with patients.
Martyn S. Substituted Judgement, Best Interests, and the Need for Best respect. Cambridge Quarterly of Healthcare Ethics 1994; 3(2):195-208.
p.203 Best respect can be understood as a decision-making standard that rejects any result as inevitable, identifies a group of persons best able to collect the most relevant information concerning objective moral fact and subjective moral voice, and requires this group to meet with each other to maintain focus and correct misunderstandings.
Mason J, McCall Smith A (1994). Law and Medical Ethics. 4th edition. Edinburgh: Butterworths.
(contains, at pp.439-440, the Living Will document distributed by VESS until Jan 1995)
p.338 "To say that legislation will be difficult is not, however, to say that it should not be attempted and we now believe that some form of statutory law regulating 'controlled death' is inevitable, and needed, in the United Kingdom."
Mason, J K; Mulligan, Deirdre. Euthanasia by stages. The Lancet (1996) 347:810-811.
p.810: [W]e propose the introduction of a Medical Futility Bill which, by its name, would eliminate many of the emotional responses to euthanasia. Such a Bill could be short and worded as follows. "It will not be unlawful to withdraw treatment, including physiological replacement therapy such as artificial ventilation and feeding, when at least two independent registered medical practitioners, one of whom must be a consultant neurologist, are of the opinion that a patient has sustained such damage to the central nervous system that:
i) he cannot exist in the absence of continuous care;
ii) he is permanently unable to participate in human relationships or experiences;
iii) continued treatment cannot improve his condition and is, therefore, futile; and
iv) the patient's nearest relatives or carers have been consulted.
p.810-811: We suggest that, for legal purposes, the words persistent vegetative state should be replaced by permanent vegetative state.
p.811: [D]oubt and confusion could be avoided if the uncertainties of case law were replaced by statute. We suggest that this could be achieved relatively easily by adding to the Suicide Act 1961 a section that excluded from the provisions of section 2 a registered medical practitioner who, given the existence of a competent directive, is providing assistance to a patient who is suffering from a progressive and irremediable condition and who is prevented, or will be prevented, by physical disability from ending his or her own life without assistance.
McCall Smith A, Sheldon D (1992), Scots Criminal Law. Edinburgh: Butterworths.
p.154 "The intentional switching-off of an artificial ventilator by one not medically authorised to do so would amount to murder..."
p.154 "In practice, so called 'mercy-killing' may be treated relatively sympathetically, and grounds may be found for reducing a charge of murder to one of culpable homicide in such a case, but the law continues to set its face against euthanasia."
McCrary S, Botkin J. Hospital Policy on Advance Directives: Do Institutions Ask Patients About Living WIlls? Journal of the American Medical Association 1989, 262(17):2411-2414.
p.2411 Hospitals in states with legislation that sanctions advance directives were significantly more likely to have a formal policy regarding these documents than hospitals in states without such legislation.
p.2411 Living wills and durable powers of attorney, known collectively as "advance directives" are becoming an increasingly important component of medical decision making for incompetent patients.
p.2413 It is inappropriate for hospitals to encourage patients to sign advance directives; however, mechanisms within the hospital should exist to assist patients who wish to learn more about these documents.
McGough P. Washington State Initiative 119: The First Public Vote on Legalizing Physician Assisted Death. Cambridge Quarterly of Healthcare Ethics 1993; 2:63-67. ("pro-life" view)
McIntyre K. On Advancing Advance Directives - Why Should We Believe the Promise? Archives of Internal Medicine (1995) 155:2271-2273.
More problematic than achieving "wider use" is the reality that no clear evidence shows that ADs accomplish what they are intended to accomplish. A more fundamental question is whether ADs work to the detriment of the patient, and if so, under what circumstances and how often?
McLean S, paper given to International College of Surgeons, London November 14th 1994: "Where the directive is indeed a negative declaration, the doctor would certainly be frustrated by not being able to intervene, but this presumes that the nature of the advance directive is only clinical. In fact some directives now address themselves to values histories rather than clinical condition and this would be my preferred model. The difference is that the individual describes not which medical conditions he or she would not want to live with, but rather the circumstances in which continued life is not preferable to them - even if something could be done medically."
McLean S (ed). Contemporary Issues in Law, Ethics and Medicine. Dartmouth 1996.
McLean, Sheila. End-of-life decisions and the law. Journal of Medical Ethics (1996)22: 261-262.
p.262: All individuals and professionals who deal with friends, relatives, clients and patients are aware that sometimes maintaining existence is not the humane option, yet our law will penalise anyone who helps the person who applies for relief. At the same time, it will apparently not penalise those (so long as they are clinicians) who stop providing sustenance when nobody can know what would have been chosen by the individual and on the basis of a test which is inherently flawed.
p.262: Whether it is an act or omission to suspend nutrition and hydration is legally irrelevant in such cases, because there is a pre-existing duty of care which renders them as liable for their omissions as for there acts..
262: Let no one be in any doubt. Mrs Johnstone's death was not dignified - dehydration is certainly not that. But if we do feel that her existence should not be extended, what might have been dignified would have been a single act which ended it. This our law will not allow.
McLean S (ed). Death, Dying and the Law. Dartmouth 1996.
McLean S. A Patient's Right to Know - Information Disclosure, the Doctor and the Law. Hants: Dartmouth 1989.
p.5 Recognizing the significance of communication between doctor and patient is a fundamental step in generating a therapeutic atmosphere of respecting the rights of the individual patient. The doctor who ignores or minimizes the importance of patient involvement places his or her position at risk. The number of actions against the medical profession continues to rise...
p.169 The ease with which any jurisdiction is capable of vindicating patients' rights depends on its history and jurisprudence as much as it does on willingness to make appropriate modifications or enthusiasm for change."
McLean S. Letting die or assisting death: how should the law respond to the patient in persistent vegetative state? Law & Medicine (Special edition) 1993; 11(2):3-16.
McLean S. Human Rights and the Patient in a Persistent Vegetative State. International Legal Practitioner 1994; 19(1):19-20.
p.20 Medical advances, without which Tony Bland could never in any event have been kept alive, are not unalloyed bonuses, nor is practice value-free. Doctors, lawyers, ethicists and others recognise that this is the case. But nothing will be solved simply by changing the way in which decisions are made - say, by removing them from the courts and bringing them within a legislative structure - unless other principles, cherished by all jurisdictions form the basis of the decision-making criteria. Legislation provides the opportunity to create a framework which does not rely on sophistry, and which also takes account of wider matters. Principles such as transparency and accountability of decision-making, formal justice and compassion will not inevitably form any more part of a legislative than a court-based framework, but they could.
McNulty C. Mentally Incapacitated Adults and Decision-making: a psychological perspective - Comments on Law Commission consultation papers, numbers 128, 129 and 130. Medicine, Science & the Law (1995) 35(2):159-164.
p.161 The phrases 'simple language' and 'broad terms' are ambiguous. To be of assistance, these phrases need to be operationalized in a way that leaves no room for uncertainty.
p.162 Other practical techniques for assisting a person to engage in decision-making include the presentation of information in non-verbal formats: for example, Carson (1993) suggests breaking information down into discrete units and perhaps employing flow charts and diagrams. [quoting Carson D (1993) Disabling progress: the Law Commission's proposals on mentally incapacitated adults and decision-making. J. Soc. Welf. Fam. Law (in press).]
Mather, C Ready, L, Management of acute pain. British Journal of Hospital Medicine 1994, vol 51(3).
p.85 The treatment of pain after surgery in British hospitals has been inadequate and has not advanced significantly for many years, according to the report of the working party on pain after surgery from the Royal College of Surgeons of England and College of Anaesthetists...
p.85 Our failure to provide adequate postsurgical analgesia results from a reliance upon conventional, inadequate and antiquated methods of opioid administration.
Mead, Gillian E; Turnbull, Christopher J. Cardiopulmonary resuscitation in the elderly: patients' and relatives' views. Journal of medical ethics (1995) 21:39-44.
p.41: Doctors would have resuscitated 99 per cent of patients in the event of a cardiac arrest, which is significantly higher than the number of patients desiring CPR....[T]he ratio of patients to doctors refusing CPR was 15 to 1.
p.41: The reported success rate of CPR in the elderly ranges from 3.4 per cent ... to 15 per cent ..., and is lower in patients with multisystem disease.
p.41: [T]here was a significant proportion of patients who declined CPR. This group of patients did not differ significantly in age, sex or level of dependence. Therefore, the only reliable way to identify patients who do not desire CPR is to ask all patients their opinion about CPR. If this were done routinely, it would avoid resuscitating patients against their will.
Meier D, Cassel C. Euthanasia in Old Age - A Case Study and Ethical Analysis. Journal of the American Geriatrics Society 1983; 31(5): 294-298.
p.296 ...exercise of the right to request a mercy killing is limited because it depends upon the participation of another agent.
Menikoff J. Beyond Advance Directives - Health Care Surrogate Laws. New England Journal of Medicine 1992; 327(16): 1165-1169.
p.1165 A statute that designated a "backup" surrogate decision maker attempts, in effect, to make the world of living wills more like the world of ordinary wills.
p.1165-6 ...in the absence of a living will or durable power of attorney, decisions about health care are best made by family and friends. Granted, as studies have shown, these decisions are not always perfect. Nonetheless, most of us would probably be more comfortable knowing that our family and friends are taking care of us than having such decisions made by bureaucrats.
p. 1166 Having been frustrated by legal and bureaucratic obstacles at every turn, the father finally took matters into his own hands, removed his child from the ventilator, and held him until he died, all the while keeping members of the medical staff away at gunpoint.
Meredith S. A Testament of Intent. Law Society Gazette April 1994; 91(15):26-28.
p.28 ...if there is a dispute, the existence of a living will is likely to provide admissible and decisive evidence on an application to the court of a patient's consent to medical treatment. For that reason and as medical science continues to advance living wills will undoubtedly become increasingly popular in this country.
Mezey M, Evans L, Golub Z, Murphy E, White G. The Patient Self-Determination Act: Sources of Concern for Nurses. Nursing Outlook 1994; 42(1):30-38.
p.31 Although physicians as a group are ambivalent about patients as decision makers and rarely initiate discussions about such decisions, nurses expect to help patients (and family members or significant others) to develop and exercise self-determination.
p.35 ...nurses deal with situations in which decisions to forego treatment have resulted in underuse of comfort measures.
Mezey M, Latimer B. The Patient Self-Determination Act - An Early Look at Implementation. Hastings Center Report 1993 Jan-Feb; 16-20.
p.16 Advocacy has been described as the extent to which a facility encourages patients to execute advance directives. Advocacy is a continuum as simple as giving all patients health care proxy forms and living wills, to a comprehensive education program aimed at encouraging patients to complete advance directives. The institution's intent in this regard is communicated in its overall mission statement, in its protocols for advance directives, and in the structure it selects for implementation of the PSDA.
Miles S, August A. Courts, Gender and the "Right to DIe". Law, Medicine and Health Care 1990;18:85-95.
p.85 The right to refuse life-sustaining treatment exemplifies a changing accommodation between controversial personal choices and the values our society holds collectively.
p.87 The first difference is the courts' view that a man's opinions are rational and a woman's remarks are unreflective, emotional, or immature. Second, women's moral agency in relation to medical decisions is often not recognized. Third, courts apply evidentiary standards differently to evidence about men's and women's preferences. Fourth, life-support dependent men are seen as subjected to medical assault; women are seen as vulnerable to medical neglect.
p.91 Gender profoundly affects judicial analysis of right-to-die cases. Judicial reasoning about men stresses the role of personal autonomy in these controversial decisions. Judicial reasoning about women examines the role of caregivers.
Miller P. Death With Dignity and the Right to Die: Sometimes Doctors Have a Duty to Hasten Death. Journal of Medical Ethics 1987; 13: 81-85.
p.81 ...the very ways we talk about death and dying need to come under scrutiny, and it is likely that our technical advances should be paralleled by equally arduous advances in the semantic and rhetorical approaches we take to death.
p.83 ...the difficulty is that the phrase "right to die" is at best problematic because of the associations that right suggests with duties and obligations.
p.83 There is a qualitative difference between being a dispenser of death and being a physician who will help a patient in the difficult process of dying.
p.83 ...when I am breathing my last breath, it is better to be touched by a hand than violated by a tube.
Miller R. Hospice Care as an Alternative to Euthanasia. Law Medicine & Health Care 1992; 20(1-2):127-132.
p.130 When the Cruzan family was finally authorized to discontinue their daughter's feeding tube, the hospital required 35 armed guards to protect the patient from activists who tried to storm her room and reconnect her tube.
Mills, Elizabeth. The greying of Europe - How can health systems cope? The Economist, February 12, 1994, p.24. By the year 2020, a quarter of the European population will be 60 or over, according to a recent report....Demand [for NHS resources] increases dramatically from the age of 80 onwards. For example, in the UK, the very old comprise only about 12% of the overall pensioner population, but utilise nearly 1/3 of National Health Service resources....20% of the UK's coronary care units and 40% of consultants administering thrombolytic therapy have age-related admission policies, some with age thresholds as low as 60.
Miyaji N. The Power of Compassion: Truth-Telling Among American Doctors in the Care of Dying Patients. Social Science Medicine 1993; 36(3): 249-264.
Molloy D, Harrison C, Farrugia M, Cunje A. The Canadian Experience With Advance Treatment Directives. Humane Medicine 1993; 9(1):70-76.
p.72 Surveys of the attitudes of physicians and nurses to health care directives show support for their use; still, when confronted with them, a significant proportion of these professionals ignore the written directives and provide care incompatible with patients' choices.
Morgan, Derek. Odysseus and the binding directive: only a cautionary tale? Legal Studies (1994) 14(3):411-442.
p.412 a crucial dimension of autonomy might be thought to be the ability to enter into binding agreements. In trying to protect people from coming later to regret their previously expressed decisions we may be refusing to treat them 'as an autonomous and responsible person.'
p.417 [refers to] the important question of whether I can now say 'I do not want to be remembered as a demented person; therefore if I become demented don't treat any illness that might kill me.' But then when I become demented I may no longer care about what people think about me in the long term and I may well have a happy, though somewhat simple existence.
p. 441 Doctors are notoriously hopeless communicators, at least when it comes to the patient, and however desirable or fashionable, the prospect of a real, effective dialogue, without at least a prompt from the patient, is a distant signal.
Morrison S, Morrison E, Glickman D. Physician Reluctance to Discuss Advance Directives - An Empirical Investigation of Potential Barriers. Archives of Internal Medicine (1994) 154:2311-2318.
Morrison R. Depression and the desire to die. British Medical Journal, 309, Letters, 22 October 1994:1088.
Those who automatically assess an expressed wish to die as a symptom of depressive disorder leave us with a question. As all human beings have to die at some time, at what stage is it healthy to wish to do so? Or must we fight death to the end?
Morrison RM, Olson E, Mertz KR, Meier DE, The Inaccessibility of Advance Directives on Transfer From Ambulatory to Acute Care Settings. Journal of American Medical Association, August 9, 1995, 274(6):478-482.
p.478 Of the subgroup of patients who were judged not to have the capacity to make medical decisions during their admissions, 26% (14/53) had their directives recognized. When the advance directive was recognized, it appeared to influence treatment decisions in 12 (86%) of 14 cases.
p.478 ...hospital policy with respect to the PSDA often follows the letter of the law more than its purpose.
p.482 ...our results may over-represent the recognition of advance directives...
...Accessibility of previously executed advance directives was poor for all patients but was particularly poor for non-whites.
Mower W, Barraff L. Advance directives - Effect of Type of Directive on Physicians' Therapeutic Decisions. Archives of Internal Medicine 1993 Feb 8; 153: 375-381.
Respondents were more likely to withhold cardiopulmonary resuscitation when given a therapy-specific advance directive vs general-statement advance directive, 84% vs 73% respectively. With a therapy-specific advance directive that was supported by a proxy and prior patient-physician discussion, 100% of physicians were willing to withhold cardiopulmonary resuscitation.
Detailed advance directives with a supportive proxy, coupled with physician-patient discussion, furnish the most reliable medical directives.
Nowell-Smith Patrick, Euthanasia and the doctors - a rejection of the BMA's report. Journal of Medical Ethics, 1989, 15:124-128.
p.125. …aside from the fact that some people might prefer death to the best care in the world and the fact that the reason why people in hospices do not ask for euthanasia may well be that they know that the request will not b granted, the claim that palliative care makes euthanasia unnecessary needs to be supported by evidence of the availability of such care to all who need it.
p.126. However close they may come in other ways PVE and AVE are acts which always differ in intention, and to make its case for disallowing AVE in situations in which it recommends PVE the report relies on what is known as the Principle of Double Effect. Briefly stated, this is the principle that if an act is expected to have two effects, one good and one bad, it is permissible if the agent's intention was to produce the good effect (the bad effect being merely a foreseen but unintended consequence) but not if it was to produce the bad effect. Thus a doctor may not kill his patient to end his pain but may act to relieve the pain even though he knows that his action will kill the patient.
p.127. In any case, the principle is irrelevant to the dispute between supporters and opponents of AVE since it only comes into play if it is already agreed that the death of a patient to whom a doctor has administered AVE is a 'bad effect' and that is just the point at issue.
p.127. Historically, medical ethics rests, not on the one principle that a doctor must not take life, but also on the principle that a doctor must always act in the best interest of his patients. What is new in our situation today is that these two fundamental principles sometimes point in different directions.
p.127. It is interesting that Lord Dawson of Penn who, as we now know, intentionally ended the life of George V in 1935 was opposed to the legislation of AVE on the grounds that good doctors did it anyway in suitable cases and that it was better to keep the law out of the doctor-patient relation as far as possible.
p.128. If the autonomy of the patient is to be paid more than lip-service we must allow people to answer questions about the value of their lives for themselves.
Ogden R. Euthanasia, Assisted Suicide & AIDS. British Colombia: Perreault Goedman Publishing 1994.
p.71 Three of the respondents, in particular those who had been involved in more than one assisted death, indicated that they had access to drugs through an underground network. It was mentioned by several that connections were important. Patients who are not well-connected risk having second-rate deaths through the use of second-rate drugs.
p.90 Distressing images equal to those of deplorable back-alley abortions are conjured up by the appalling and torturous conditions amongst which some of the assisted deaths in this study took place. This may make a case for state regulation of euthanasia. The data indicate that individuals are involved in euthanasia and assisted suicide in a completely unregulated, underground environment.
p.90 ...and at the present time it (euthanasia) is happening with no record, no discussion, no consultation, no consistency, no direction, no guidance, and no comfort to the public that it is being done correctly (quoting Tibble & Broadway, 24 Aug 1993 CNS News Ontario, reporting on the 1993 Canadian Medical Association Conference).
p.99 A more suitable alternative (to the Dutch system) is to refer all such cases to a quasi-judicial tribunal that reviews applications for aid-in-dying. The onus would be on the patient to give evidence regarding his or her clinical condition, and consideration must be given to alternative treatments. The application would be completed with the assistance of a professionally trained aid-in-dying counsellor who would evaluate the applicant's ability to give informed consent and ensure that all relevant social, medical and psychiatric information was included. Approved applicants would be issued an aid-in-dying licence, which would allow for voluntary euthanasia to be administered under medical supervision, but not necessarily by a physician.
p.102 Individuals who choose to involve themselves in euthanasia and assisted suicide should be accountable for their decisions. The present legal climate, with its inconsistencies and confusion about killing versus allowing to die, imposes a barrier that precludes any accountability for justified killing.
p.75 Mary contacted the Hemlock Society for help in planning Daniel's death, but found them to be of little help. She sought advice through AIDS Vancouver and the PWA Society and was told that they did not provide counselling with respect to euthanasia or assisted suicide. Finally Mary read some "how to" British publications that she found were oriented toward the dying person, with little emphasis on those who might assist.
p.82 (case example where instructions from Goodbye Society and Final Exit failed to avoid a messy death).
Ogilvie A, Potts S. Assisted suicide for depression: the slippery slope in action? British Medical Journal 1994; 309:492-493. (analyses Chabot case).
p.493 The particular problem that is raised by "psychiatric euthanasia" is the dubious boundary between psychiatric illness and understandable unhappiness.
Orentlicher D. Advance Medical Directives. Journal of the American Medical Association 1990; 263(17): 2365-2367.
Ouslander J, Tymchuk A, Krynski M. Decisions about Enteral Tube Feeding among the Elderly. Journal of the American Geriatrics Society 1993; 41:70-77.
p.70 Advance-directive discussions about enteral tube feeding and other health care decisions, using understandable hypothetical clinical vignettes that describe risks and benefits that might influence decisions, should be encouraged in the practice of geriatric medicine.
p.73 For the rapidly increasing numbers of people who will live into extreme old age with some degree of cognitive and/or physical impairment, certain types of decisions are probably more important to address in an advance directive than others.
p.73 Decisions about cardiopulmonary resuscitation (CPR) among the extremely old and frail geriatric population, especially in nursing homes, may be viewed as moot because of the abysmal survival rate of CPR in this patient population. Decisions about enteral feeding, on the other hand, may be critical because more and more people are living to an age when self-feeding becomes problematic due to advanced dementia, stroke, Parkinson's disease or other conditions.
p.73 ...it is possible to construct a clinical vignette about the decision to accept or forego enteral feeding that generally healthy and cognitively intact elderly people can comprehend and potentially use in making this difficult decision.
p.74 The vignette format lends itself to a thorough explanation of risks and benefits. ... Such explanations may not only be useful when speaking with patients, but with potential proxy decision makers as well.
Ouslander J, Tymchuk A, Rahbar B. Health Care Decisions Among Elderly Long-term Care Residents and Their Potential Proxies. Archives of Internal Medicine 1989; 149: 1367-1372.
p.1367 Comparisons were made between decisions made by the elderly participants and predictions of those decisions by potential proxies, including the participant's closest relative and a nurse, a social worker, and a physician in the facility. There was a low rate of agreement between decisions made by the elderly participant and the decisions the potential proxies thought they would make.
p.1371 ...of particular concern, is the rate of disagreement between the physicians and their elderly patients on the high-risk vignettes.
Palley C (1991) The United Kingdom and Human Rights. London: Sweet & Maxwell.
p.70 ...rights, freedom and liberties function as "hoorah" words, necessarily implying wrongfulness by government for failing to create conditions necessary for their exercise. Such language becomes even more emotive when conjoined with adjectives such as immutable, inalienable, imprescriptible, fundamental and absolute, or with phrases such as "simple and uncontestable principles."
p.71 Although such adjectives (and indeed nouns in seventeenth century usage) make for sloganising, they reflect significant characteristics of human rights and of legal and international rights, as well as aspects of political theory.
p.72 The word "fundamental" as meaning foundation or basis had a long history and was first used by James I who used it in a Scots sense with reference to his right to succession. Subsequently the concept of "fundamental law" was regularly invoked from 1635 onwards in Charles I's struggle with Parliament.
p.72 Fundamental law, taken in conjunction with the ideas of immutability and inalienability, was later translated in the British American colonies into new constitutional arrangements which were scarcely alterable because of the rigid procedures required for constitutional amendment. That is to say, the Constitution and fundamental rights were entrenched, so that their provisions constituted higher or fundamental law, putting them beyond the reach of passing legislatures, temporary expressions of popular sentiment and majority tyranny.
The most recent development has been use of the term "absolute." It refers to the notion that fundamental rights are always binding in all circumstances whatsoever. Modern international human rights Conventions have adopted this notion... Such Conventions can in consequence cause problems for Governments.
p.78 ...attacks on the good faith of those who disagree, and claims to infallibility, will, by strengthening the spirit of faction, delay incremental, let alone institutional, change.
Palmer A. Withdrawal of Medical Treatment - The Emergency Case. Family Law 1995; 195-198.
Pearlman R. Are We Asking the Right Questions? Hastings Center Report (1994) 24(6):S24-S27. [re Advance Directives]
Pellegrino E. Compassion Needs Reason Too. Journal of the American Medical Association 1993; 270(7): 874-875.
(counterargument to Quill)
Pence, Greg. Dr Kevorkian and the Struggle for Physician-Assisted Dying. Bioethics (1995)9(1):62-71.
p.64: Most of us write about these issues from afar, or wait for someone else to practice such medical civil disobedience. But meanwhile, every year, two million Americans die, some of them in ways that they hate. At least Kevorkian is doing something. At least he doesn't expect someone else to do the hard part. Other physicians who assist terminal patients give them prescriptions for large dosages of barbiturates with winks about "not taking the whole thing at once", or they write prescriptions for morphine drips for the nursing staff to start at 3 a.m. If something goes wrong, they're at home asleep in their suburban homes, and the patient must suffer until they return. In contrast, Kevorkian personally stays with the patient, making sure that things end correctly. Yet instead of being praised for his personal involvement, critics meanly say that he stays because he enjoys watching people die.
p.67: In the trial, which was carried live on an American cable channel called "Court TV", Fieger wisely focussed only on the moral arguments, such as the patient's right to control his own life and death. Most especially, Fieger focussed on the right not to suffer. Even if a patient was not technically "terminal", Fieger argued, no one has a right to tell you how much you "should" be able to suffer.
Perrett, Roy W. Buddhism, euthanasia and the sanctity of life. Journal of medical ethics (1996) 22:309-313.
p.310: [T]here are many schools of Buddhism and no central authority on matters of precept or practice.
p.310: [F]or the purposes of their [the Keowns] article it is permissible to take the Theravada tradition, "the oldest and most orthodox of the surviving traditions", as representative of the Buddhist position....[But] since the Keowns suggest that part of the interest of their comparison lies in the fact that Buddhism is an influential religion with roughly 500 million Asian adherents, it is worth remarking that the vast majority of these persons are Mmahayanists....Theravadin doctrines and texts have no authority in Mahayana Buddhism.
p.311: it is important to recognise that Buddhist attitudes to suicide have always been much less harsh than Christian ones. Suicide from despair has been seen in Buddhism as a prudential error since, given their unresolved karma, suicides will just be reborn in situations similar to those they were seeking to escape from.
[Quotes the Dalai Lama as stating the following opinion] "In the event a person is definitely going to die and he is either in great pain or has virtually become a vegetable, and prolonging his existence is only going to cause difficulties and suffering for others, the termination of his life may be permitted according to Mahayana Buddhist ethics."
Pijnenborg L, van der Maas, et al. Withdrawal or Withholding of Treatment at the End of Life - Results of a Nationwide Study. Archives of Internal Medicine (1995) 155:286-292.
Pijnenborg L, van Delden JJM, Kardaun JWPF, Glerum JJ, van der Maas PJ, Nationwide study of decisions concerning the end of life in general practice in the Netherlands. British Medical Journal, 5 November 1995, 309:1209-1212.
p.1209. Over two fifths of all patients in the Netherlands die at home.
p.1210. In 1990 about 129,000 deaths occurred in the Netherlands: 42% at home, 41% in hospital, and 16% in nursing homes.
p.1211. General practitioners are in general more familiar with the backgrounds of their patients, with the patients' relatives, and with the patients' past and present illnesses. This is perhaps why they more easily assume that they know what is best for the patient or that they will harm the patient by discussing these subjects. This paternalistic approach conflicts with the principle of autonomy.
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research. Deciding to Forego Life-Sustaining Treatment - A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. New York: Concern for Dying 1983.
Puma J, Orentlicher D, Moss R. Advance Directives on Admission: Clinical Implications and Analysis of the Patient Self-Determination Act of 1990. Journal of the American Medical Association 1991; 266(3): 402-405.
p.402 ...physicians and providers have viewed such directives as a patient responsibility instead of a professional or institutional one.
p.402 ...most physicians are uncomfortable discussing withholding or withdrawing treatment...
p.402 ...many younger, healthy patients, and their physicians, believe that advance directives are only for the elderly or the chronically ill.
Qiu R. Chinese Medical Ethics and Euthanasia. Cambridge Quarterly of Healthcare Ethics 1993; 2:69-76.
p.69 Traditional Chinese medical ethics is the application of Confucianism in the field of medical care. Confucian ethics is a form of virtue ethics with a strong deontological basis.
p.70 ...after ...a popular program called "Half Hour at Noon," Central People's Broadcasting Station received more than 1,000 letters from its audience all over China; 85% of them favoured some form of euthanasia...
p.70 There are two Chinese translations of the word "euthanasia": anlesi, which means peaceful and happy dying, and wutongzhisi, which means painless killing. The first is the more widely accepted.
p.71 Most Chinese ethicists argue that the principles of beneficence, autonomy, and justice can be applied to justify euthanasia in certain circumstances.
p.71 There have been cases in which patients committed suicide by hanging themselves, or have cut an artery with a knife, or have jumped from a window after their request to withdraw treatment was refused.
Quill T, Cassel C, Meier D. Care of the Hopelessly Ill - Proposed Clinical Criteria for Physician Assisted Suicide. New England Journal of Medicine 1992; 327(19):1380-1384.
(also discusses and lists proposed safeguards)
p.1381 Approximately 6000 deaths per day in the United States are said to be in some way planned or indirectly assisted, probably through the "double effect" of pain-relieving medications that may at the same time hasten death or the discontinuation of or failure to start potentially life-prolonging treatments.
p.1382 In physician-assisted suicide, a lethal amount of medication is usually prescribed that the patient then ingests. Since this process has been largely covert and unstudied, little is known about which methods are the most humane and effective.
p.1383 The most pressing problem is the potential abandonment of competent, incurably ill patients who yearn for death despite comprehensive comfort care.
p.1383 Physicians who respond to requests for assisted suicide from such patients do so at substantial professional and legal peril, often acting in secret without the benefit and support from colleagues. This covert practice discourages open and honest communication among physicians, their colleagues, and their dying patients. Decisions often depend more on the physician's values and willingness to take risks than on the compelling nature of the patient's request. There may be more risk of abuse and idiosyncratic decision making with such secret practices than with a more open, carefully defined practice. Finally, terminally ill patients who do not choose to take their own lives often die alone so as not to place their families or caregivers in legal jeopardy.
p.1383 ...there is more risk for vulnerable patients and for the integrity of the profession in such hidden practices, however well intended, than there would be in a more open process restricted to competent patients who met carefully defined criteria.
Quill T. Death and Dignity - A Case of Individualised Decision Making. New England Journal of Medicine 1991; 324(10): 691-694.
Quill T. Doctor, I Want To Die. Will You Help Me? Journal of the American Medical Association 1993; 270(7): 870-873
p.872 Clinical criteria have been developed to guide physicians who find assisted suicide a morally acceptable avenue of last resort.
Quill T. You Promised Me I Wouldn't Die Like This! - A Bad Death as a Medical Emergency. Archives of Internal Medicine (1995) 155:1250-1254.
p.1253 A limitation of our current solutions, particularly if barbiturate sedation and voluntary dehydration are excluded, is that they are discriminatory based on arbitrary aspects of the patient's disease.
p.1254 ,,,all such decisions, whether they be to discontinue life-sustaining treatment, barbiturate sedation, voluntary dehydration, or active physician assisted death, should incorporate safeguards. {he lists, to be included: patient fully informed of treatment options etc, patient's thinking must be clear, and second opinion from palliative care expert necessary)
Quill T E and Kimsma G. End-of-Life Care in the Netherlands and the United States: A Comparison of Values, Justifications, and Practices. Cambridge Quarterly of Healthcare Ethics; 6(2): 189-204.
p.189 The Dutch acute care system has access to all modern technologies, yet virtually all of its citizens have comprehensive health insurance that includes nursing home care if necessary.
p.189 In addition to coverage for hospitalization and long-term care, the Dutch have model systems of primary care with equitable distribution throughout the country, usually including long-term, committed relationships between primary care doctors (huisarts) and their patients.
p.190 ...evidence of overtreatment at the end of life, often against the wishes of the patient and family, continues to be found.
p.190 ...hospice benefits are mainly available to patients with cancer and acquired immunodeficiency syndrome who are likely to die within six months, but unavailable to the majority of patients who are dying of chronic degenerative diseases of the lungs, heart, and nervous systems whose prognoses are more uncertain.
p.191 PAS is illegal in approximately 35 states, but usually not prosecuted if uncovered, provided it remains undetected by the media.
p.191 The Dutch may have more 'trust' in physicians, based on long-term relationships, and therefore more acceptance of paternalistic aspects in medical care,...
p.191 Despite easy access, the Netherlands has one of the lowest abortion rates in the world, in part because the Dutch combine this 'tolerant' policy with comprehensive, obligatory educational and outreach programs about birth control and family planning.
p.191 The media takes its public role in debating controversial issues seriously, but is less prone to sensationalism and tends to give less voice to the extremes. Dutch problem-solving tends to favor consensus building and negotiation rather than discussion and confrontation.
p.192 At the same time that teenage pregnancy has reached epidemic proportions, education about and access to effective birth control are being contentiously opposed.
p.192 All Dutch residents must pay into funds that guarantee universal access to health insurance that covers primary care, hospitalization, and nursing home care. When compared to the United States, the Dutch are more highly taxed, and have a large middle class and a narrower gap between rich and poor.
p.192 Achieving consensus on potentially divisive social issues has been a condition for survival, and may therefore be more culturally ingrained.
p.192 Finally, the Dutch are very pragmatic. They try to solve difficult problems, and achieve practical solutions, even if it requires compromise. Dutch legislators and citizens are willing to try policies that are imperfect, and even internally inconsistent, in order to address an important problem.
p.193 Most Dutch physicians reject the principle of double effect as applied to clinical decisionmaking, viewing it as a religious concept that is inadequate to cover complex end-of-life decisions. The Dutch are taught to take responsibility for both intended and unintended consequences, and the notion that a clearly foreseen consequence that is not intended could be free of moral culpability is felt to be psychologically and morally problematic.
p.195 A recent survey of Washington State physicians showed that 12% had received a genuine request for PAS within the year studied, and 24% responded by providing a potentially lethal prescription. Another 4% of physicians received requests for VAE, and 24% of those provided a lethal injection. Other, more limited surveys consistently show 5 to 7% of responding physicians anonymously admit actively assisting a patient to die at some time in their career.
p.197 Opponents of sanctioning VAE or PAS focus on other aspects of the report: (1) There were 1,000 cases (0.8%) of life-ending acts without an explicit request by the patient. When a small subgroup of these cases was analyzed in detail, 59% were based on a prior discussion and commitment between doctor and patient, but in the remaining 41% no such discussion had occurred. In the latter group, most cases were based on extreme suffering, imminent death, requests by the family, and substituted judgement, but there were a few exceptions from the early 1980s that "should not have happened".
Reichenbach B. Euthanasia and the Active-Passive Distinction. Bioethics (1987) 1(1):51-73.
(philosophical analysis of Rachels etc)
Reid D, Haas G, Hawkings D. Locus of Desired Control and Positive Self-Concept of the Elderly. Journal of Gerontology 1977; 32(4): 441-450.
p.441 ...both anecdotal and empirical evidence that losing personal control can lead to dysfunctional behaviour and emotional upset.
Reilly B, Magnussen R, Ross J, et al. Can We Talk? Inpatient Discussions About Advance Directives in a Community Hospital. Archives of Internal Medicine (1994) 154:2299-2308.
p.2301 ...patients resuscitated following drug overdose, myocardial infarction, or gastrointestinal hemorrhage had significantly greater probability of survival than patients with metastatic cancer or whose CPR lasted longer than 30 minutes.
p.2303 Ninety percent (61/68) of physicians favoured discussing CPR when the physician believes the patient should not be resuscitated, but only 61% favoured discussion with patients the physician believes should be resuscitated.
p.2304 ...patients told their illness could be fatal were progressively more likely to be willing to discuss CPR as their age increases.
p.2305 All patients received the patient education brochure about advance directives at the time of admission, but only 13.6% (29/214) reported having read it.
p.2305 Our findings indicate that acute hospitalization presents an unrealized opportunity for physicians and their patients to discuss advance directives. Forty-seven percent of the inpatients we interviewed discussed directives with their physicians - twice the rate reported in previous studies - yet many more (80%) were willing to do so.
Reilly B, Wagner M, Ross J et al. Promoting Completion of Health Care Proxies Following Hospitalization. Archives of Internal Medicine (1995) 155:2202-2206.
p.2202 We studied a consecutive series of patients (n=162) recently discharged from the acute care medical service of a community hospital where they had been interviewed about advance directives. The intervention group was randomized to receive an educational brochure and encouragement to execute durable health care proxies. The primary outcome was the proportion of patients in each group with completed durable health care proxies on file in their primary physicians' offices.
p.2202 Subgroup analysis of elderly patients also revealed no intervention effect. Univariate analysis revealed three significant predictors of patients' proxy completion: patient age, whether patients had discussed directives in hospital with their physicians, and whether patients' physicians completed proxies for themselves. Multiple logistic regression analysis showed that these three variables interact to predict the probability of patients' executing proxies.
Reno J. A Little Help From My Friends: The Legal Status of Assisted Suicide. Creighton Law Review 1992; 25:1151-1183.
p.1168 Despite the dearth of case law explanations for the active-passive distinction, the distinction has at least one basis in public policy: the distinction guards against fraud and abuse in assisted suicide cases.
p.1169 ...when facts portray an active assistant and a passive suicidant, the assistant may be abusive by perpetrating a murder and subsequently disguising the crime as an assisted suicide. Second, the assistant may be abusive by eliminating opportunities for the suicidant to change his mind.
(p.1170 - criticisms of active-passive distinction using hypotheticals)
p.1173 Because the Supreme Court has not ruled on the constitutionality of suicide, the legal status of assisted suicide is currently a matter within the purview of the states.
Reyk P. (1994) Choosing to Die - A Booklet for People Thinking about Euthanasia and for Those Asked to Assist. Sydney: AIDS Council of New South Wales Inc.
Roberts, John; Kjellstrand, Carl. Jack Kevorkian: a medical hero. BMJ (1996) 312:1434.
Dr Kevorkian stands outside the mainstream of medicine because of actions that most of us find dubious. But he stands outside the mainstream in another way. Jack Kevorkian is a hero....Medicine needs heroes today. Patients who suffer need their pain to be heard and felt. Those who are dying need our commitment to stay with them throughout their journey. Those who suffer sickness because of society's injustices need us to speak out for them. At a time when both personal and social suffering seem to be rising, more of us need to stand up and be counted among the few who have said "Enough!"
Robertson J. Cruzan: No Rights Violated. Hastings Center Report 1990 Sep-Oct: 8-9. (J Robertson is Professor of Law at Texas University)
p.9 The competent patient's right to refuse treatment has been explicitly recognized (though called a liberty interest rather than a right). Logical development of this interest could extend beyond refusing medical treatment to suicide, assisted suicide, and consensual active euthanasia.
Robertson J. Second Thoughts on Living Wills. Hastings Center Report 1991 Nov-Dec; 6-9.
p.7 ...they are accepted most readily only in those circumstances where they are least needed.
p.9 ...the living will's conceptual frailties limit its usefulness.
Rodger J. Living Wills. Summons (The Journal for the Medical and Dental Defence Union of Scotland Members) Spring 1994:2.
p.2 ...since they [living wills] are written on the Voluntary Euthanasia Society's headed notepaper, they often alarm doctors who receive them.
p.2 In Scotland there is provision in the Living Will for the patient who becomes incapable of giving or withholding consent to any medical treatment to apply to the Court of Session for the appointment of a Tutor Dative.
p.2 Until the validity of such Advance Declarations is settled, doctors should continue to treat them with caution. They should be considered when determining proper treatment but the overriding factor should always be what is in the best interests of the patient.
Rodway, Anne, (Deputy Chairman, Medical Ethics Committee, British Medical Association.) Pro-euthanasia lobby represents the minority view in Britain. British Medical Journal, 310, Letters, June 1995:1466.
Individual examples, however compelling, should not be allowed to outweigh the need for strong advocacy on behalf of the numerically greater numbers in vulnerable groups such as elderly, mentally incapacitated, and disable people. They would inexorably be pressured, put at greater risk, and subjected to further disadvantage by any change in our present law and therefore in end of life care and management.
Rodriguez G. An Opposing View. Routine Discussion of Advance Health Care Directives: Are We Ready? Journal of Family Practice 1990; 31(6): 656-659.
p.656 Hospitals do not routinely enquire about their existence when important medical decisions are being made. (referring to living will documents)
Roe J, Goldstein M, Massey K, Pascoe D. Durable Power of Attorney for Health Care: A Survey of Senior Center Participants. Archives of Internal Medicine 1992; 152:292-296.
p.292 ...the most frequent reasons for not executing a durable power of attorney for health care were: lack of awareness of the form, procrastination, and difficulty choosing a proxy.
(p.293 (Table): Reasons given for not executing a proxy document: i)Hard to select a proxy; ii)Family should make decisions; iii)Physician is responsible for decisions; iv)Hard to find proxy who shared same views on health care; v)Religious beliefs play a part; vi)Physician never recommended it; vii)Too soon.)
p.294 Twenty-nine percent of the users did not understand the basic mechanism of the proxy appointment...
p.295 A clear indication of the patient's goals for therapy is probably more important than an exhaustive checklist; the latter may indicate preferences that change with slight changes in the medical situation.
Sabatino C. Surely the Wizard Will Help Us, Toto? Implementing the Patient Self-Determination Act. Hastings Center Report 1993 Jan-Feb; 12-16.
p.15 ...consumer comments highlight serious concerns about the potential coercion inherent in the act of giving out advance directive forms at the time of admission. This is an acutely stressful time when most of us are conditioned to sign the multitude of paperwork plopped in front of us, even though we are least able to reflect upon our options.
Sachs, Greg A. Increasing the Prevalence of Advance care Planning. Hastings Center Report November-December 1994, Special Supplement, p.S13-S16.
p.S14 Individuals more likely to have advance directives or to plan care in advance are older, white, well-educated, and tend generally to plan for the future, as evidenced by a greater proportion of estate wills than the general public. In a few studies, women were more likely than men to draw up advance directives.
p. S15 Although I believe we can increase the prevalence of advance care planning, the fact remains that only about 40 percent of all U.S. citizens have wills to dispose of their estates. I suspect that regardless of the interventions attempted, there are a large number of people who will never voluntarily confront their own possible future incompetence and death and make plans for their future care.
Sacks M, Kemperman I. Final Exit as a Manual for Suicide in Depressed Patients. American Journal of Psychiatry (Letters) 1992; 149(6):842.
Although the book is intended for adults suffering from a terminal illness, our two patients with major depression mistakenly felt that the book was directed to them. This is particularly understandable, since Humphry does not devote much consideration to the impact of depression on the decision to commit suicide.
Sam M, Singer P. Canadian Outpatients and Advance Directives: Poor Knowledge and Little Experience but Positive Attitudes. Canadian Medical Association 1993; 148(9): 1497-1502.
p.1497 The perceived barriers to completing an advance directive were inability to write, the belief that an advance directive was unnecessary, a fatalistic attitude, previous discussion of preferences, a desire to leave the decision to doctors, uncertainty about preferences, a desire to discuss preferences rather than document them, a desire to wait until the situation arose, a desire to write down preferences in the future and a desire to avoid thinking about preferences or advance directives.
p.1497 Respondents with more knowledge of life-sustaining treatments were more likely to want to complete an advance directive.
p.1499 Fifty-one (49%) preferred proxy directives, 9 (9%) instruction directives, 25 (24%) both types and 5 (5%) neither; 15 (14%) were not sure what type of directive they preferred.
Samuels A. The Advance Directive (or Living Will). Medicine Science and the Law (1996) 36(1):2-8.
Sanders S. A Time to Live or a Time to Die? Nursing Times 1992 88(45):34-36.
Saultz J. An Affirmative View. Routine Discussion of Advance Health Care Directives: Are We Ready? Journal of Family Practice 1990; 31(6): 653-656.
Savulescu J. Treatment Limitation Decisions under Uncertainty: The Value of Subsequent Euthanasia. Bioethics 1994; 8(1):49-73.
p.49 With treatment, a patient may recover such that he no longer requires life-supporting treatment. However, his life may be not worth living. If active euthanasia of "non-terminal" patients is prohibited, the option of dying will no longer be available.
p.52 Paradoxically, patients are allowed to die when they are (or would be) very uncertain about the nature of the final outcomes of treatment, but are not allowed to die when it becomes clearer what the nature of their options are.
p.52 Critically ill patients are allowed to die because it is believed that future disabled life is not in their interests. However, there may be considerable uncertainty about the nature of outcomes. While this may be the best guess of what life will be like in the future, it may also be a blind guess. It is likely that some patients are allowed to die when there is some objective chance of a worthwhile future life.
p.71 When treating critically ill incompetent patients, it is commonly argued that we ought to aim to treat the patient as he would rationally desire, or according to his best interests. However, there is often extreme uncertainty at three levels concerning the outcomes of treatment of critically ill incompetent patients:
1. uncertainty about outcomes and their probabilities.
2. uncertainty about whether this patient would prefer this particular outcome and to what degree he would prefer it.
3. uncertainty about whether an outcome is in the patient's best interests. In critically ill competent patients, there is often uncertainty as to whether this patient wants to be treated.
In the face of such uncertainty, subsequent euthanasia can be a valuable prescription for critically ill patients. It allows us to correct the error of treating those whose lives turn out to be not worth living. It also allows us to treat more of those whose lives might be worth living, without the fear that we might be committing them to a miserable existence.
p.72 Paradoxically, it is only with the possibility of death that we can rationally save more worthwhile lives.
Savulescu J. Rational Desires and the Limitation of Life-Sustaining Treatment. Bioethics 1994; 8(3):191-222.
Scheper T, Duursma S. Euthanasia: The Dutch Experience. Age and Aging 1994; 23:3-8.
In the Netherlands the distinction between the types of euthanasia, also between active and passive euthanasia, has been dropped in official documents. In the eyes of the law acts of omission and commission directed at the hastening of death are the same. The definitions for euthanasia and assisted suicide in use in the Netherlands are defined by the State Commission on Euthanasia: "Euthanasia is the intentional termination of life by somebody other than the person concerned at his or her request. Assisted suicide means intentionally helping a patient to terminate his or her life at his or her request."
Schneiderman L, Arras J. Counselling Patients to Counsel Physicians on Future Health Care in the Event of Patient Incompetence. Annals of Internal Medicine 1985; 102: 693-698.
p.693 When confronting serious illness, patients crystallize attitudes that have been evolving throughout their lives about personal dignity, acceptable function, endurable pain, reasonable risks...
Schneiderman LJ, Pearlman R, Kaplan R, Anderson J, Rosenberg E. Relationship of General Advance Directive Instructions To Specific Life-Sustaining Treatment Preferences in Patients with Serious Illness. Archives of Internal Medicine 1992 Oct; 152: 2114-2122. QUOTES SEATTLE VETERANS AFFAIRS MEDICAL CENTER DOCUMENT (HISTORY VALUES) DEVELOPED BY DR HM RADKE & ETHICS COMMITTEE TO BE ESPECIALLY USEFUL FOR JUNIOR HOUSE DOCTORS OR NURSES.
asking them to complete a checklist of procedures may direct attention away from more important issues of values and goals. Nothing, of course, can substitute for thoughtful, timely, and, perhaps, repeated discussions recorded in detail in the patient's medical record. Unfortunately, the reality of medical practice makes it likely that such information will be overlooked. (CF MILESTONE HOUSE)
(CONCLUDED:) The brief general instruction component of the California DPAHC is not helpful in communicating patient wishes regarding specific life-saving procedures.
p.2120 Patients often are not equipped to make well-informed judgements on the basis of their limited medical knowledge, and asking them to complete a checklist of procedures may direct attention away from more important issues of values and goals.
p.2120 ...we suggest that advance directive instruments should be developed that enable patients to express their wishes in terms of quality of life under varying clinical states.
p.2120 The rationale is that patients are fully capable of knowing and expressing their wishes with respect to conditions under which they would prefer not to be kept alive and that physicians, through their training and experience, are best able to understand which treatments (or lack of treatments) best meet their patients' wishes.
Schostak Z. Jewish Ethical Guidelines for Resuscitation and Artificial Nutrition and Hydration of the Dying Elderly. Journal of Medical Ethics 1994; 20:93-100.
p.93 In reference to 'tube-feeding', while there is some debate about whether elderly patients may refuse the initiation of 'tube-feeding', there is a consensus that once initiated, it may not be withdrawn.
p.93 The age-old legal-ethical system known as halacha governs virtually every aspect of Jewish life and offers much direction in the area of medical ethics and conduct.
Seale Clive, Addington-Hall Julia, Euthanasia: The Role of Good Care. Journal of Social Science & Medicine, 1995, 40(5):581-587.
p.581. For a long time, it was not admitted that a hospice patient might consider suicide, because such a decision would reflect poorly on the skills of the hospice staff. "Properly cared for hospice patients will not need to commit suicide" was a frequent maxim, for which the proof was never demonstrated. What a burden to rest on hospice staff, and how likely untrue!
p.586. ...the view that hospice care stems the desire of a significant minority of people to die sooner or have euthanasia, receives little support in the finds reported here.
p.586. ...respondents for hospice patients are significantly more likely to feel that an earlier death would have been better...
p.586. Requests for euthanasia may indicate not that patients are giving up in the face of suffering, but that they are positively asserting their desire to control events.
p.586. ...it may be the case that the acceptance of hospice care, for both patients and their relatives, indicates a greater acceptance of dying in general.
p.587. If the psychological roots of the desire for euthanasia lie in a desire for personal control, this may explain why good care appears to make only a small difference. The provision of care - even of 'good' care - may itself serve to remind the person (and those around them) of their declining ability to do things for themselves.
p.587. It is probably also the case that fear of dependency is deeply rooted, and is not readily amenable to alteration by a programme of care.
Seckler A, Meier D, Mulvihill M et al. Substituted Judgement: How Accurate Are Proxy Predictions? Annals of Internal Medicine 1991; 115(2): 92-98.
p.92 Although patients predicted that both their physicians (90%) and family members (87%) would accurately predict their wishes, neither family members nor physicians, in fact, were able to accurately predict patients' wishes...
p.95 ...physicians did no better than chance alone in predicting the wishes of their patients...
p.95 ...most of the patients incorrectly believed that their designated family members and physicians would accurately predict their wishes.
p.95 Using hypothetical scenarios, the investigators found poor agreement between healthy elderly patients, their spouses, and their physicians concerning decisions for resuscitation.
Sedler R. The Constitution and Hastening Inevitable Death. Hastings Center Report 1993; 23(5): 20-25.
(considers Michigan, Kevorkian, Casey etc)
p.20 The "right question," as regards the ACLU challenge to Michigan's ban on assisted suicide, is not, I would submit, whether there is a constitutional "right to assisted suicide" or a constitutional "right to die." Rather the right question, framed in the context of this particular constitutional challenge, is whether an absolute ban on the use of physician-prescribed medications by a terminally ill person to hasten that person's inevitable death, if and when the person chooses to do so, is an "undue burden" on the person's "liberty" interest protected by the Fourteenth Amendment's due process clause, and so is unconstitutional.
Shaffer D, Garland A, Gould M, Fisher P, Trautman P. Preventing Teenage Suicide: A Critical Review. Journal of the Am. Acad. of Child Adolesc. Psychiatry, 1988; 27(6):675-687.
p.675 Adolescent suicide is uncommon; the rate in 1984 for all 15- 19-year olds was nine deaths per 100,000 population...
p.675 Suicide becomes increasingly common after puberty and its incidence increases in each of the teen years, reaching a peak in young people at age 23...
p.676 In the United States nearly five times more teen boys commit suicide than girls.
p.676 Drug overdose, by far the most common method used in suicide attempts, accounts for few completed suicides in teenagers.
p.676 Formerly hospitalized adult psychiatric patients have significantly higher suicide rates than non-patients.
p.677 ...the symptoms of severe depression (psychomotor retardation, hopelessness, hypersomnia, etc) best predicted later suicide.
p.678 ...many teenagers commit suicide in the context of an acute disciplinary crisis or shortly after rejection or humiliation (e.g., dispute with a girlfriend, an incident of being ridiculed or teased, or failing at some event), all with a brief stress-suicide interval.
Shapiro R. Unanswered Questions Surrounding the Patient Self-Determination Act. Cambridge Quarterly of Healthcare Ethics 1992; 2:117-119.
Shapiro R, Derse A, Gottlieb M, Schiedermayer D, Olson M. Willingness to Perform Euthanasia: A Survey of Physician Attitudes. Archives of Internal Medicine 1994; 154:575-584.
(usable responses from 740 physicians)
p.581 ...as the patients continued to request euthanasia in the course of their illnesses, physicians were increasingly willing to perform it. Physicians seemed to be more comfortable agreeing to the requests after they were assured that certain safeguards had been met during the intervening interval - including psychiatric consultation and discussions with family members.
Shavelson, L. A Chosen Death: The Dying Confront Assisted Suicide, New York, Simon and Schuster, 1995.
p. 26 "The science surrounding suicide for the terminally ill is an all-anecdotal, and dangerously inexact. Clouded by secrecy, no precise body of medical knowledge has evolved about the best methods for ending the life of someone suffering from a terminal illness."
p. 40. "Virtually everyone with a terminal illness who decided to take their life (and many who decide not to) fits the clinical guide-lines that would allow a psychiatrist to label them depressed, yet the depression of someone with a terminal illness is complexly different from the classical psychological illness."
p. 66. "...for the majority of people who are dying, it will be sufficient merely to know that assistance is available. They will rest assured of comfort as they progress to their natural deaths, perhaps never needing the fatal dose that is ready."
p. 103. "The present prohibition against legal assistance in suicide has guaranteed that not a single physician has ever assisted in the death of a patient while following set rules, nor under the observation of her peers, nor under the watchful eyes of the law. Yet surveys of doctors have found that up to 37% have, in secrecy, aided in the death of a terminally ill patient. While the public expresses fear of abuse of assisted suicide, no one is overseeing those physicians who have already made aid in suicide part of their medical practice."
Short D. Difficult Patients. British Journal of Hospital Medicine 1994; 51(3):128-130.
Failure of the patient to respond to treatment tends to make the doctor regard that patient as difficult. The doctor feels a sense of failure, and is inclined to suspect the patient of not having adhered to the prescribed regimen.
Simmonds N. Rights, Socialism and Liberalism. Legal Studies 1985; 5(1):1-9.
Singer P et al. Advance Directives: Are they an Advance? Canadian Medical Association Journal 1992; 146(2): 127-134.
p.129 Value-based directives maybe easier for patients to complete, because they do not require a knowledge of health problems or medical treatments. However, preference-based directives may be easier for health care professionals to interpret and implement, because they provide more explicit directions regarding treatment. It is difficult to know how to balance these conflicting goals. Since values and preferences represent fundamentally different, but complementary, approaches, instruction directives should contain both these components.
Skegg P. Law, Ethics and Medicine - Studies in Medical Law. Oxford: Clarendon Press 1984.
p.130 If a doctor acts with the intention of bringing about the death of a patient, the fact that he was acting to alleviate suffering, or for some other exemplary motive, would not at present provide him with a defence to a charge of murder." See: R. v. Hyam [1975] AC 55,73.
p.131 It is widely accepted that if there was no other way to assuage pain, a doctor would be morally justified in administering a pain-killing drug to a patient whose death was imminent, even if he believed that the drug might have the incidental effect of hastening death.
Slomka, Jacquelyn. What Do Apple Pie and Motherhood Have to Do With Feeding Tubes and Caring for the Patient? Arch Intern Med (1995) 155:1258-1263.
p.1258: Professional groups such as the President's Commission for the Study of ethical Problems in Medicine and Biomedical and Behavioral Research, the Hastings Center, and the American Medical Association have formulated guidelines that define artificial nutrition and hydration as medical treatment that, like any medical treatment, can be withheld or withdrawn when medically and ethically appropriate.
p.1258: The reluctance of health care professionals, patients, and families to forego burdensome artificial nutrition and hydration has been explained in several ways. many persons may fear that death from dehydration and/or starvation is a painful way to die, although current literature disputes this assumption....The reluctance of clinicians, patients, and families to withhold or withdraw burdensome artificial nutrition and hydration has also been linked to the "symbolic" meanings associated with this treatment. While some authors recognize a difference between the physiological aspects of providing medical "nourishment" and the social aspects of eating and feeding, in both cases nourishment has been viewed as symbolizing faithfulness, love, nurturance, and care of both the living and the dying.
p.1262: Health care professionals should refrain from using the term feeding tube when providing artificial nutrition and hydration. The continued use of this term rather than others such as stomach tube or gastric tube may add to our uneasiness and confusion and is not helpful to patients and family members who may be struggling with the images that such a term evokes.
p.1262: artificial nutrition and hydration in terminally ill patients may increase pain, edema, respiratory congestion and the need for suctioning), nausea, and vomiting...discomfort associated with dehydration results from thirst, which can be controlled with frequent mouth care, oral ice chips, and sips of fluids.
p.1262: Health care providers should not assume that because they are providing a medical treatment, they are fulfilling their obligation to care for the patient. The social meanings involved in caring for the patient may be more important than the medical treatment itself.
Solomon, Andrew. A Death of One's Own. The new Yorker, May 22, 1995.
p.54: There is a divide in the current discourse on euthanasia between, on the one hand, the emotional arguments put forward by people who have participated in the euthanasia process and, on the other, the libertarian rationales for legislative support of euthanasia as a civil right. Though the media have made the political and legal debate into headline news, the terms of that debate fail utterly to capture the emotional resonance of any planned death.
p.56: In America, we tend to die in the hands of specialists who never saw us healthy.
p.57: The problem with lethal injections is that they cannot be administered euphemistically: the doctor who prescribes sleeping pills pretends that they are for sleep, and the patient requesting them tends to allow him this formality. A lethal injection is a lethal injection, and no one can pretend that you wanted it for any purpose other than death.
p.58: Everything that had been intolerable to my mother was made tolerable when she got those pills, by the sure knowledge that when life became unliveable it would stop....Once we had all settled the future, we could live fully in the present, something that we had never really done before. Euthanasia offers a remarkable liberation, for the imminence of death, once it is fully acknowledged, can be the basis for a stripped and pure honesty that is not possible under ordinary circumstances.
p.58: In "A Short History of Decay" E. M. Cioran writes, "What greater wealth than the suicide each of us bears within himself?"
p.64: If death were a passive thing, which occurred to those who couldn't be bothered to resist it, and if life were an active thing, which continued only by virtue of a daily commitment to it, then the world's problem would be depopulation, and not overpopulation. Having been through the whole business, I would put the infrequency of suicide down more to difficulty of it than to the undesirability of its objective.
p.69: Having seen the simple logic of euthanasia in action and witnessed the comfort of that control, what astonishes me is how many people die by other means.
Smith II G. (1993) Reviving the Swan, Extending the Curse of Methuselah, or Adhering to the Kevorkian Ethic? Cambridge Quarterly of Healthcare Ethics (1993), 2:49-56.
(includes concise description of Kevorkian's suicide machine)
p.50 "The Harvard-Globe poll also showed nearly two out of three Americans favoured doctor-assisted suicide and euthanasia when terminally ill patients requested it."
p.53 "The goal of the Royal Dutch Medical Association (KNMG) has long been to control this area rather than to seek to prohibit it simply because the Association realized that rigid prohibitions, once established, could not be enforced uniformly or verified.
Sommerville A. Remembrance of conversations past: oral advance statements about medical treatment. British Medical Journal 1995; 310:1663-1665.
p.1664 Assessing the strength and validity of informal statements raises questions about the degree to which people really mean what they say and how selectively or otherwise their friends later remember and interpret conversations which were never written down or intended for public consumption.
p.1664 The crux of the legal and moral arguments about advance oral statements may be how much the individual believed that a conversational comment about non-treatment would ever apply to him or herself.
p.1664: Just as living wills are an imperfect substitute for contemporaneous discussion, so reported conversations are a poor replacement for written statements made in consultation with a doctor. Assessing the strength and validity of informal statements raises questions about the degree to which people really mean what they say and how selectively or otherwise their friends later remember and interpret conversations which were never written down or intended for public consumption.
p.1664: The crux of the legal and moral arguments about advance oral statements may be how much the individual believed that a conversational comment about non-treatment would ever apply to him or herself....the time span between speaking and having the conversation reported may influence how it is recalled and the reliability and the independence of the witnesses may be open to question.
p.1665 Not only do people often pre-edit their conversations to fit the sensibilities of the listener they are also more careful about comments that are likely to be quoted than they are about throw away lines.
p.1665: Oscar Wilde famously pointed out two tragedies of life: one being not to get your heart's desire and the other being to get it. Perhaps another, greater, tragedy might be getting what someone else imperfectly recalls as being your heart's desire.
Stanley J (ed). The Appleton International Conference: Developing Guidelines for Decisions to Forgo Life-Prolonging Treatment. Journal of Medical Ethics 1992 (Supplement); 18:1-22.
p.6 Where a patient has lost the capacity to make decisions but has given a valid advance directive to refuse treatment and/or has appointed a representative to make decisions about refusal of treatment, such directives and decisions should be respected by doctors and other health-care workers.
p.6 Patients having decision-making capacity who are severely and irremediably suffering from incurable diseases sometimes ask for assistance in dying. Such requests for active termination of life by a medical act which directly and intentionally causes death may be morally justifiable and should be given serious consideration.
p.7 The term 'decision-making capacity' was chosen instead of 'competent' because the latter has different meanings, legal and Angell, in different countries.
Stelter K, Elliott B, Bruno C. Living Will Completion in Older Adults. Archives of Internal Medicine 1992 May; 152: 954-959.
p.954 Two characteristics described those who already had an LW: they were highly educated and did not consider the LW form too long for its purpose.
p.954 Surveys have shown that only 5% to 15% have executed an LW.
Stevens C, Hassan R. Management of Death, Dying and Euthanasia: Attitudes and Practices of Medical Practitioners in South Australia. Journal of Medical Ethics 1994; 20:41-46.
p.41 ...forty-seven per cent had received requests from patients to hasten their deaths. Nineteen per cent had taken active steps which had brought about the death of a patient. Sixty-eight per cent thought that guidelines for withholding or withdrawing treatment should be established. Forty-five per cent were in favour of legalisation of active euthanasia under certain circumstances.
p.43 In response to the question: "Have you ever taken active steps which have brought about the death of a patient" which was asked of all respondents, 19 per cent said yes (56 respondents).
p.45 The legal ambiguity of the current situation means that patients are often subject to the ethical and moral codes of individual doctors when decisions are made.
p.45 These and previous findings suggest, firstly, that alteration or clarification of the law would not necessarily change the practices of individual medical practitioners, and secondly, that questions of legality are currently not the principal considerations used when making decisions to withhold or withdraw treatment to terminate the lives of patients.
Stone J. Advance Directives, Autonomy and Unintended Death. Bioethics 1994; 8(3):223-246.
Stone J. Withholding life-sustaining treatment. New Law Journal (1995) 354-355. [reconsiders state of UK law on PVS]
Suicide. BMJ (News) 1 Jan 1994; 308:7-11.
(suicide statistics and facts around the world)
(Australia:) p.7 ...the highest suicide rate of young people in the industrialised world...
(NSW:) p.7 1 in 4 people commit suicide by hanging, 1 in 5 by poisoning, and 1 in 6 by carbon monoxide poisoning.
(Denmark:) p.8 Taking your own life is seen as an individual matter, and people who do so are not, for example, banned from having a church burial.
(France:) p.10 Suicide is now the leading cause of death among young adults aged 25-34.
(England and Wales:) p.11 A review in Population Trends (spring 1993) stated that the occupations with the highest suicide rates were vets, pharmacists, dentists, farmers, and doctors. The reasons may include easy access to drugs...
SUPPORT Principal Investigators. A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients. Journal of the American Medical Association 1995; 274(20):1591-1598.
($10 study by J Lynne, W Knaus et al. SUPPORT stands for 'Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.' See also: Jama editorial on this article: Lo, B. Improving Care Near the End of Life)
p.1591 Objectives.- To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.
p.1591 Patients.- A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%.
p.1591 Results.- The Phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time.
p.1591 Enhancing opportunities for more patient-physician communication, although advocated as a major method for improving patient outcomes, may be inadequate to change established practices.
p.1594 Thirty-one percent of phase I patients with interviews preferred that CPR be withheld, but only 47% of their physicians accurately reported this preference during the first interview. Nearly half (49%) of the 960 phase I patients who indicated a desire for CPR to be withheld did not have a DNR order written during that hospitalization. Nearly one third of these patients (278[29%]) died before discharge.
p.1594 In interviews conducted after a patient died, surrogates indicated that 50% of all conscious phase I patients who died in the hospital experienced moderate or severe pain at least half the time during their last 3 days of life.
p.1595 Families reported that half of the patients who were able to communicate in their last few days spent most of their time in moderate or severe pain.
p.1595 Based on a study in a defined population at our Wisconsin site, we estimate that patients meeting SUPPORT criteria account for approximately 400,000 admissions per year in the United States and that another 925,000 people are similarly ill but would not meet SUPPORT entry requirements of being hospitalized or in intensive care. Patients with SUPPORT illnesses and severity account for about 40% of persons dying in the defined population.
p.1596 Can enhanced decision making improve the experience of seriously ill and dying patients?
p.1596 Because there was no movement toward what would seem to be better practices, one could conclude that physicians, patients, and families are fairly comfortable with the current situation. Certainly, most patients and families indicated they were satisfied, no matter what happened to them.
p.1596 Physicians have their established patterns of care, and while they were willing to have the SUPPORT nurse present and carrying on conversations, physician behaviour appeared unchanged. Perhaps physicians and patients in this study acknowledged problems with the care of seriously ill patients as a group. However, when involved with their own situation or engaged in the care of their individual patients, they felt they were doing the best they could, were satisfied they were doing well, and did not wish to directly confront problems or face choices.
p.1596 The study certainly casts a pall over any claim that, if the health care system is given additional resources for collaborative decision making in the form of skilled professional time, improvements will occur. In phase II of SUPPORT, improved information, enhanced conversation, and an explicit effort to encourage use of outcome data and preferences in decision making were completely ineffectual, despite the fact that the study had enough power to detect small effects.
p.1596 The five hospitals had been chosen for their diversity and their willingness to undertake a substantial and controversial challenge. Yet none showed a tendency toward improvement in these outcomes.
p.1597 In conclusion, we are left with a troubling situation. the picture we describe of the care of seriously ill or dying persons is not attractive. One would certainly prefer to envision that, when confronted with life-threatening illnesses, the patient and family would be included in discussions, realistic estimates of outcome would be valued, pain would be treated, and dying would not be prolonged. That is still a worthy vision. However, it is not likely to be achieved through an intervention such as that implemented by SUPPORT. Success will require reexamination of our individual and collective commitment to these goals, more creative efforts at shaping the treatment process, and, perhaps, more proactive and forceful attempts at change.
Taranta A. Living Wills. Lancet (Letters) 5 Mar 1994. (Story of someone who choked on ravioli and died of pneumonia after nurse mistakenly avoided artificial feeding for patient with stroke)
Teno, Joan M; Nelson, Hilde L; Lynn, Joanne. Advance Care planning; Priorities for Ethical and Empirical Research. Hastings Center Report, November-December 1994, S32-S35.
S32: If social practices either do not or cannot conform to a well-accepted and well-justified normative principle, sometimes the principle must be adjusted so that it better reflects the possibilities of real behaviour. for example, if it turns out that a few patients engage in advance care planning, this may indicate that the full range of moral concerns of patients is not captured by the present practice of advance directives or by the underlying principle of patient self-determination. the principle might then have to be modified, for example, to acknowledge the interests of others or claims of social justice. The idea of mutual accommodation of moral principle to moral intuition and intuition to principle, a process that Rawls has called reflective equilibrium, is one that might be extended to the interaction of normative and empirical research.
Terrence Higgins Trust & the Centre of Medical Law & Ethics at King's College, London. Living Will Declaration. In: Kennedy I, Grubb A, "Medical Law, Text With Materials (2nd ed)", London: Butterworths 1994, pp.1365-1368.
There Should be Limited Legislation on Advance Directives. BMJ (Medicopolitical Digest) 22 Jan 1994; 308:276-277.
The BMA council has endorsed the Law Commission's new proposals for limited legislation on advance directives. The commission wants legislation to be introduced to cater, for example, explicit refusals of treatment on the lines of Jehovah's witnesses' no blood directive but not for advance directives which outline in general terms a patient's wishes about non-treatment and the circumstances in which they are to apply.
May Thomas, Reassessing the Reliability of Advance Directives. The Cambridge Quarterly of Healthcare Ethics, Summer 1997, 6(3):325-338.
p.325. If the AD is to reflect the patient's autonomy, we must address the question of the identity of the person who issues the AD and his or her relation to the person who is to receive (or not receive) treatment through the application of the AD.
p.327. Autonomous decisions reflect the agent's assessment of the balance of reasons for action, "reasons" here construed in the broadest possible sense.
p.329. In making healthcare decision, many people might find that they wish to defer to the judgement of a physician, stating, in essence, "Do what you feel best, Doc. I trust your judgement." This represents an appeal to an "indirect strategy," in which the patient feels her goals will best be achieved if she does not make healthcare decisions herself, but rather defers to the physician.
p.329. Importantly, however, the patient retains the ability to reconsider this appeal if she should come to lose confidence in the judgement of the physician, or even come to decide that she does in fact trust her own judgement on the matters in question.
p.329. ...it is this ability to reconsider the strategy at the time of application that distinguishes merely deferring to a physician's judgement from advance directives.
p.332. One important difference between ADs and slave relationships is that an AD may be changed at any time while the patient retains competency. However, at the time of an AD's application, the commitment to this strategy cannot be reconsidered, and thus at this time the AD becomes analogous to a slave relationship. (And it is at the time of application that an AD becomes important! ...)
p.333. The patient's inability to assess the application of the AD in the particular instance places the patient in a situation in regard to the AD that I analogous to the voluntary slave.
p.334. While advance directives do not reflect autonomy per se, they do offer a mechanism for incorporating what would likely be the patient's values and preferences in circumstances where these values and preferences cannot be incorporated directly.
p.336. Consistency with other decisions can indicate whether the patient had given sufficient thought to the AD to make it a reliable predictor of what decision she would take.
p.337. ...there are a range of cases in which we might appropriately disregard an advance directive on the basis of reasons that would not make it appropriate to disregard active decisions by the patient.
Thomasma, David C. When Physicians Choose to Participate in the Death of Their Patients: Ethics and Physician-Assisted Suicide. Journal of Law, Medicine & Ethics, 24 (1996): 183-197.
p.185 The kinds of cases listed as "involuntary" in the Remmelink Report are ones that occur every day in medical settings. For example, a defective newborn might be denied treatment by physicians because his/her life would be completely senseless. Dutch courts have supported the decisions of physicians not to offer medically futile treatment. Cases like this are then reported as "involuntary euthanasia" because the Dutch refuse to distinguish between active and passive euthanasia, holding that the distinction has no moral merit.
p.187 [Dr Jack] Kevorkian believes that individuals have an absolute right to control their own lives and to judge when to take them. This might be the basis of his view that he is responsible to a "higher law" than that of society. [Dr Timothy] Quill, on the other hand, seems to operate from a traditional view of the doctor-patient relationship, one in which patient autonomy is circumscribed by physician duties to preserve and prolong life. His sensitivity to these values has often been praised. . . . Yet a question remains: In the end, if patient autonomy prevails over the values of the medical profession to preserve life, what is the real difference between Kevorkian's and Quill's actions? Only procedural differences lie between them, it seems to me.
p.189 Although pain can be controlled (though frequently it is not), suffering cannot.
p.191 Some of the factors shaping today's debate are similar to those that shaped the discussion in Nazi Germany leading to social programs to kill the vulnerable and weak . . . Attitudes of superiority and of devaluing individual lives creep into our own thinking as well. . . . What the Nazis did was not euthanasia, but murder for the "good" of the state.
p.192 Once we abandon the notion that one should never intend the death of another person, the distinction between active and passive euthanasia vanishes, as does its moral significance. If it is morally appropriate to intend the death of patients, then assisting in their suicide appears to be a weaker solution than directly giving them an injection. . . . If one intends to kill directly by action, then withholding or withdrawing care or actively killing the patient makes no moral difference, because the intention is that death is a good thing, and one's actions are meant to bring about that death as a means of relieving suffering.
p.194 Almost 2.5 million people die each year in the United States but only 250,000 receive hospice care.
Tilden V, Tolle S, Lee M, Nelson C. Oregon's Physician-Assisted Suicide Vote: It's Effect on Palliative Care. Nursing Outlook 1996;44(2):80-83.
p.80 While a phsician-assisted suicide bill passed in Oregon remains suspended by legal injunction, the state has introduced numerous palliative care innovations and initiatives in response to citizens' demands for improved comfort, compassion, control, and communication during serious illness and at the end of life.
Tindall, Gillian. The Times Magazine, March 4 1995.
We live today in a world where individual choice is highly rated. We control our fertility; we are urged to monitor our own health and take personal responsibility for it; the options of medical technology can save lives or transform them. Yet we cling to the idea that the process of dying, and that alone, must be "left to nature."
Even the hospice movement, which for years regarded the voluntary euthanasia lobby as its natural enemy, now recognises that the aims of the two movements - to achieve a decent ending of life - differ only in degree, and that common ground may be cultivated.
Tomkin, David; Hanafin, Patrick. Medical treatment At Life's End: The Need For Legislation. MLJI (1995) 3-10.
p.4: It is submitted that the substituted judgement doctrine is entirely inappropriate in the case of a patient in a permanently unconscious state who has never expressed a preference in relation to treatment withdrawal, as the surrogate cannot really base his decision on the presumed preferences of such a patient.
p.7: In our view it is still open for English law to adopt this more sophisticated approach of seeking to apply 'substituted judgement' before having recourse to 'best interests' where it is appropriate. The form the law would take would be that the doctor's duty is first to consider what he believes would be the patient's decision and only secondly, in default of that, to fall back on the 'best interests' test.
Tomlinson T, Howe K, Notman M, Rossmiller D. An Empirical Study of Proxy Consent for Elderly Persons. Gerontologist 1990; 30(1): 54-64.
p.59 This study's results confirm the traditional wisdom of using close family members as proxy decision makers, albeit in a limited way. Close family members performed slightly better than physicians in reflecting the elderly person's wishes.
p.59 Even if the appointed person cannot more accurately represent the elderly person's wishes regarding medical treatment, their wishes are being honoured in one respect: the person they prefer is the one making decisions for them.
p.59 ...the major ethical argument in favour of durable power of attorney has been that such appointed agents would be best able to represent the values of the principal... To the extent that such an appointment does not increase the likelihood that the patient's wishes will be carried out, the ethical attractiveness of this mechanism is considerably diminished.
p.60 Clearly, if substituted judgement is the ideal standard of choice for proxy medical treatment decisions, then decision makers should be asked to make the decisions they believe the elderly person would want for themselves. The study results show that this is not a vain or merely symbolic exercise.
Tribe D, Korgaonkar G. Withdrawal of Medical Treatment. Journal of the Medical Defence Union (1993) 2:42-44.
Turner, Toni. Letting Go. Nursing Times (1993) 89(11):19.
All the nurses were given a choice as to whether they wished to continue nursing Tony [Bland] after food was discontinued. 'But not one of them wanted to be moved from the ward, and our student nurses asked to be able to continue to participate in Tony's nursing,' says Mrs [Jean] Rook [chief nurse at Airedale General].
The most upsetting time was when pro-life protesters arrived outside the hospital with banners stating: 'Medical Cleansing, This way' and 'Tony is the first - he won't be the last.'
United States Constitution, 14th Amendment.
VA Medical Center. Advance Directives - Making Decisions About Your Health Care. (1993) VA Medical Center, Seattle.
p.1 To make decisions with your doctor you need to know as much as possible about your health care. Ask your doctor about what you don't understand. Your other health care providers, such as your nurses, social workers, therapists, and chaplains, are also very good sources of information.
p.1/memo 11-08 1992: If an advance directive lacks internal consistency or directs treatment which falls outside the scope of the standards of medical practice, the case will be referred to the Ethics Committee or to the Chief of Staff.
Van der Maas P J. End of life decisions in mentally disabled people. British Medical Journal, 315, 12 July 1997:73.
p.73. Protecting vulnerable life does not mean prolonging it regardless of the amount of suffering this would entail.
p.73. van Thiel et al found that active ending of life of patients with mental handicap was highly exceptional in the Netherlands, occurring perhaps once or twice a year. In about a third of all deaths of people with mental handicap in 1995 there had been a decision to withhold or withdraw life prolonging treatment, while in about 10% of cases opioids had been given in doses that might have shortened life. In the general population, by comparison, these figures are 20% and 19% respectively. The estimated amount of time by which life had been shortened was on average lower than in end of life decisions in the general population, suggesting that end of life decisions in people with mental disability are made in a late stage of the terminal illness.
Veatch, Robert M. Abandoning Informed Consent. Hastings Center Report, March-April 1995: 5-12.
p.7: Problems with Best Interest in Clinician Judgements....First, the clinician must be expected to determine what will best serve the patient's medical or health interest; second, the clinician must be expected to determine how to trade off health interests with other interests; and third, the clinician must be expected to determine how the patient should relate the pursuit of her best interests to other moral goals and responsibilities, including serving the interests of others and fulfilling any moral duties she may have that happen to conflict with her interest.
p.10: Anyone who has given his or her life to an area of professional specialization ought to be expected to value the contributions of that area in an atypical way....Specialists not only make the value tradeoffs atypically, they also make the moral tradeoffs atypically.
Virmani J, Schneiderman J, Kaplan R. Relationship of Advance Directives to Physician-Patient Communication. Archives of Internal Medicine 1994; 154:909-913.
p.909 Physicians were frequently unaware of their patients advance directives.
p.909 Despite public enthusiasm for the use of advance directives and great efforts to promote them, we found little evidence that these documents are associated with enhanced communication between patients and physicians about end-of-life treatment decisions.
Voigt R. Euthanasia and HIV Disease: How Can Physicians Respond? Journal of Palliative Care (1995) 11(2):38-41.
p.38 Family physicians with large HIV-positive populations face requests for information on euthanasia more often than most physicians.
Volicer L. Need for Hospice Approach to Treatment of Patients With Advanced Progressive Dementia. Journal of the American Geriatrics Society 1986; 34(9): 655-658.
p.657 ...most demented patients, who are treated vigorously for intercurrent diseases, survive to a stage in which the swallowing reflex is affected. This results in choking and development of aspiration pneumonia. Choking and pneumonia can be prevented by insertion of a nasogastric tube or by feeding a patient through gastrostomy. Both of these strategies increase patient discomfort but allow survival of a patient in vegetative state for years.
Vries B, Bluck S, Birren J. The Understanding of Death and Dying in a Life-Span Perspective. Gerontologist 1993; 33(3):366-372.
p.366 ...young adults fear death whereas older adults worry more about the circumstances of their death...
Wal G, Dillman R. Euthanasia in the Netherlands. British Medical Journal 1994; 308:1346-1349.
p.1346 Since trustworthy empirical data have not been available until recently, moral viewpoints have coloured the estimated numbers of cases of euthanasia (and assisted suicide) and the way in which it is practised. Recent reports, however, have diminished this empirical uncertainty.
p.1346 ...euthanasia is defined as someone other than the patient intentionally ending the life of a patient at the patient's request.
p.1346 Many patients (40%) die at home, especially patients with cancer (48% of all cancer deaths).
p.1346 Almost all patients (99.4%) have health care insurance, and 100% of the population is insured for the cost of protracted illness. There are no financial incentives for hospitals, physicians, or family members to stop the care of patients. Moreover, the legal right of patients to health care on the basis of their insurance will override budget and other financial agreements.
p.1347 ...euthanasia occurs at home in one of about 25 deaths, in hospitals in one out of 75, and in nursing homes in one out of 800.
Wal G, Onwuteaka-Philipsen B. Cases of euthanasia and assisted suicide reported to the public prosecutor in North Holland over 10 years. British Medical Journal 1996; 312: 612-613.
p.612 From 1984 to 1993, 1707 cases of euthanasia were reported. The number of cases reported increased from 1 in 1984 to 426 in 1993. Most cases were reported by general practitioners (74%). Specialists and nursing home physicians reported fewer cases (22% and 3%). There were more male patients than female (57% v 43%). The average age was 62 years for men and 65 years for women. . . . 78% of the cases concerned patients with cancer and 9% patients with AIDS.
p.612 From 1984 to 1993, 0.82% of all deaths were due to reported cases of euthanasia.
p.612 One limitation [of this study] is that it deals only with reported cases of euthanasia and therefore does not extend to the "dark numbers" - cases that were not reported.
p.613 The proportion of all deaths due to euthanasia varies greatly between different diseases.
Walker R, Schonwetter R, Kramer D, Robinson B. Living Wills and REsuscitation Preferences in an Elderly Population. Archives of Internal Medicine (1995) 155:171-175.
p.171 The group with living wills desired less CPR in scenarios involving functional impairment and cognitive impairment, but not in scenarios involving current health, severe illness, and terminal illness. After receiving CPR information, both groups changed their preferences such that intergroup differences were no longer seen.
p.171 Cardiopulmonary resuscitation information can influence preferences even among persons with living wills, implying that preferences are neither fixed nor always based on adequate information.
Wanzer S, Federman D, Adelstein et al. The Physician's Responsibility Towards Hopelessly Ill Patients - A Second Look. New England Journal of Medicine 1989 Mar 30; 320: 844-849.
p.845 All too frequently, physicians are reluctant to withdraw aggressive treatment from hopelessly ill patients, despite clear legal precedent.
p.848 If there is no treatable component to the depression and the patient's pain or suffering is refractory to treatment, then the wish for suicide may be rational. If such a patient acts on the wish for death and actually commits suicide, it is ethical for a physician who knows the patient well to refrain from an attempt at resuscitation.
Ward B, Tate P. Attitudes among NHS doctors to Requests for Euthanasia. British Medical Journal 1994; 308:1332-1334.
p.1332 For the benefit of both patients and doctors euthanasia should be discussed more openly.
p.1333 A sizeable proportion of doctors are asked by their patients to hasten their deaths - 60% in this study, 40% of Australian medical practitioners, and 75% of Dutch family doctors.
p.1333 ...32% of doctors who had faced a request for active euthanasia reported that they had complied with such a request. This proportion is comparable to the 29% of doctors in an Australian study who said that they had taken active steps to end a patient's life.
p.1334 ...the current law on euthanasia is not satisfactory for patients. Patients may be aware that, although they may request active euthanasia, doctors cannot provide it legally; indeed, to raise this issue may be thought to compromise their relationship with the doctor. Conversely, remaining silent may also affect this relationship. A doctor may think that he or she cannot raise the issue for personal, professional, or legal reasons, and so communication between doctors and patients may be blocked.
p.1334 ...the fact that active euthanasia is illegal may deprive doctors of access to sources of adequate and effective advice and support, both professional and personal.
Watts D, Howell T. Assisted Suicide is Not Voluntary Active Euthanasia. Journal of the American Geriatrics Society 1992; 40(10): 1043-1046.
p.1043 Assisted suicide involves several possible levels of assistance: providing information, for example, may mean providing toxicological information or describing techniques by which someone may commit suicide; providing the means can involve written prescriptions for lethal amounts of medication; supervising or directly aiding includes inserting an intravenous line and instructing on starting a lethal infusion.
p.1044 By opening the door for counselling or treatment of reversible conditions, requests for assisted suicide might actually lead to averting some suicides which would otherwise have occurred.
Webber P, Fox P, Burnette D. Living Alone with Alzheimer's Disease: Effects on Health and Social Service Utilization Patterns. Gerontologist 1994; 34(1):8-14. (USA)
p.8 The prevalence of Alzheimer's disease is estimated at... slightly over 10% of the total population aged 65 or older;
p.8 Prevalence rate estimates for Alzheimer's disease are as high as 47% of those 85 and older living in the community
Weiler K. Substitute Decision Makers in health care treatment decisions. Journal of Professional Nursing 1991 Sep-Oct; 7(5): 268.
Weir R. The Morality of Physician-Assisted Suicide. Law Medicine & Health Care. 1992; 20(1-2):116-126.
p.121 A decision made by a patient to forgo mechanical ventilation, feeding tubes, or some other life-sustaining treatment involves the negative right (or liberty right) of treatment refusal. A correlate of this negative right is the obligation of the patient's physician not to interfere with or thwart that negative right unless the physician has some overriding obligation of another sort.
By contrast, a request by a patient for a physician's assistance in committing suicide can be interpreted as involving a positive right (or welfare right), or at least a claim to that effect. The difference is important: the patient does not merely request to be left alone by the physician, but tries to impose a moral obligation on the physician to help the patient accomplish the desired end of self-destruction. That claim, whether based on merit or need, is weak, and certainly need not be regarded as imposing an obligation on the physician who receives it.
Wellman C. The Inalienable RIght to Life and the Durable Power of Attorney. Law and Philosophy (1995) 14:245-269.
p.247 Our language of rights is theoretically misleading and unnecessarily controversial in practice because of the way in which we use simple labels or abstract phrases to refer to complex specific rights. What we normally call "the right to life" is almost certainly a rights-package, a cluster of very different rights bundled together because they all concern, in one way or another, someone's life. [these he enumerates as, 247-249:]
A moral claim-right not to be killed by another
A moral claim-right that others not endanger one's life
A moral liberty-right to defend one's life with all necessary force
A moral liberty-right to defend one's life with all necessary force
A moral liberty-right to preserve one's life by any necessary means
A moral claim-right to be rescued from the danger of death
A moral liberty-right to risk one's life
p.255 There are at least two moral reasons that ground the duty not to kill a human being. One is that the act of killing a human normally results in grievous harm, the loss of a life and thereby the loss of every other value that constitutes that person's well-being.
p.255-256 Another duty-imposing reason is that the act of killing someone is highly invasive; it intrudes into one's life in a disruptive manner and thereby invades the most private zones of the self. The fact that the act of killing a human is harmful and intrusive are specifically moral reasons because they are reasons both for an agent to refrain from acting in that manner and reasons for anyone in society with that agent to react negatively if the agent acts contrary to those reasons. They are reasons for others to act negatively to the killer because his act of killing reveals him to be one who is at least callous and probably hostile and malicious as well as arrogant in the sense of arrogating to himself another's choice whether to live or die.
p.261 When a patient has given consent to medical treatment, that treatment is much less invasive and intrusive because it is friendly rather than hostile and welcome rather than unwelcome.
Wells C. Patients, Consent and Criminal Law. Journal of Social Welfare and Family Law 1994; 1:65-78.
p.65 It has been estimated that there could be 10,000 cases of assisted euthanasia in the United Kingdom each year.
p.75 ...there is a need to expose the hidden relationship between motive and criminal culpability and to give critical thought to that between homicide, assisting suicide and euthanasia.
Wetle, Terrie. Individual Preferences and Advance Directives. Hastings Center Report November-December 1994, Special Supplement, p.S5-S8.
p.S6 Obviously, care must be taken to honor expressed values when possible, but the current emphasis on the opportunity to make choices should be tempered by a recognition that not all persons wish to be involved in all choices. Choosing not to choose is an important theme for future investigation.
Williams, Keren. GP calls for changes in the laws on euthanasia. Pulse News, May 28 1994, 54(21)
...Dr Patricia Tate also found that more than 10 per cent of doctors admitted to having practised euthanasia. . . . Dr Tate told Pulse she believed the survey highlighted the discrepancy between the experience of most doctors and the law as it stood.
Wilson William, Is life sacred? Journal of Social Welfare and Family Law, 1995, 17(2):131-148.
p.131. ...modern thinking upon the sanctity of life has itself adjusted from something approaching an absolute value to something more relativistic. For many, the principle that life is sacred operates only up to a certain point.
p.139. The casuistic distinction made is between treatment which will prolong life, deemed necessary to advance the patient's interests, and treatment which will prolong the process of dying, deemed unnecessary and inappropriate since it is in no one's 'interests', least of all a terminally ill patient, to be kept alive.
p.145. ...the notion that the sanctity of life is becoming increasingly constituted through the filter of rights.
p.146. The 'right to die' with dignity or 'how we choose' is not just a political slogan. It is fast becoming an inevitable corollary of living in a free, humane society and, as such, can hardly be resisted for long. Moreover it is consistent with a pragmatic recognition that as far as possible the decision as to who lives and who dies should be with the life-holder rather than lying in the hands of health service bureaucrats.
p.146 If life is sacred, it is no more compromised by the law acceding to a request for a lethal injection for a patient doomed to an agonizing life (or death) than in acceding to the socially convenient escape clause that morally indefensible decisions to withdraw treatment (or intervene unnecessarily) are within the sole competence of the medical profession. Medical care is either about the rights of patients or it is not.
Wolf, Susan M; Boyle, Philip; Callahan, Daniel; et al. Sources of Concern About the patient Self-Determination Act. New England Journal of Medicine (1991) 325(23):1666-1671.
p.1667: Some people wrongly assume that treatment directives are used only to refuse treatments and thus shorten life. But people use directives to request treatment as well....the point is that treatment directives are a way to express the patient's preferences for treatment, whatever they may be.
Wrenn K, Brody S. Do-Not-Resuscitate Orders in the Emergency Department. American Journal of Medicine 1992; 92: 129-133.
Young E, Jex S. The Patient Self-Determination Act: Potential Ethical Quandries and Benefits. Cambridge Quarterly of Healthcare Ethics (1992) 2:107-115.
p.109 Interpreting advance directives, particularly in the light of prognostic uncertainty, can be complex.
p.109 The anxiety of implementing advance directives only underscores the need for efficient and sensitive communication between the patient and the proxy, and the proxy and the physician.
p.112 In many Chinese and Japanese communities, autonomy has different connotations. In these communities, "autonomy" is to be expressed by the family as a whole rather than by a single designated proxy.
p.112 Truthtelling also holds differing levels of importance in different cultures.
p.112 ...Chinese, Japanese, Vietnamese, and Lebanese families who have conspired to keep elderly patients in ignorance of their true diagnosis - principally out of respect.
p.113 Our concern is that indiscriminately posing the same set of questions about advance directives to every patient is entirely likely to inflict unnecessary emotional pain on some; the mentally ill, the elderly, and pregnant women are just a few examples.
Zerwekh, Joyce. The Truth-Tellers: How Hospice Nurses Help Patients Confront Death. AJN, February 1994, 31-34.
p.31: During the dying process, the truth is never fully known.
p.33: Never use a sledgehammer to impose reality, but remain committed to telling the truth when invited...When the truth is being told, people can make informed decisions about how they will live and die. All people, not just the dying, have this right to determine their own lives without being coerced by medical expectations.
Zweibel N, Cassel C. Treatment Choices at the End of Life: A Comparison of Decisions by Older Patients and Their Physician-Selected Proxies. Gerontologist 1989; 29(5): 615-621.
p.615 The proportion of respondents reporting having written a living will varied from 4% in the study population reported in this research (Cassel & Zweibel 1987) to 15% in a telephone survey of a random sample of adults conducted by the American Medical Association (Wall Street Journal, 1988) to 17.5% in a sample of older adult research volunteers (High 1988).
p.618 ...the proportion of pairs in which the patient would want the proxy to make a decision opposite the one the proxy reported she would make ranges from 24% for tube feeding up to 44% and 50% respectively for resuscitation and chemotherapy.
p.620 Our findings on preferences for resuscitation tend to support those of Uhlmann and colleagues in the only other study examining the ability of proxies to predict patient preferences for life-sustaining treatment. In both studies, proxies were often unable to accurately report patient treatment preferences.
Copyright © 1995-8 Chris Docker. URL: http://www.euthanasia.cc/quotes.html
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