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The VESS Online Magazine gives you access to a variety of material on death & dying - from items of everyday interest and light reading to more serious academic papers. EXIT Newsletter is a moderate "pro-choice" publication. DIDMS News Journal has no such pro-choice or pro-life bias. As well as featured articles from these two publications, we present regularly updated supplements for the Net browser.
The Voluntary Euthanasia Society of Scotland Newsletter, is one of the principle sources of articles on death and dying from the right to die movement and covers both academic papers and light reading. The hard copy version of this 20-page quarterly is available free of charge to all members of VESS, or you or your institution may take out a subscription without committing yourself to being a member. We are offering as many excerpts as we can online, so you can enjoy browsing or downloading the articles.

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Legislative Proposals on Living Wills



Announcements and Scottish News

Scotland' first "right to die" case

30th January 1996: a date was been set for an Inner Court Hearing. Five judges met on March 5th to decide Janet's fate.

A judge was urged on Wednesday 20th Dec '95 to honour the sanctity of life and refuse to rubber-stamp doctors' plans to allow 52yr-old Janet Johnston's feeding tube to be removed. The Court of Session was told that before lapsing into a persistent vegetative state, Mrs Johnstone had wanted to continue living. Law Hospital HNS Trust, on the other hand, supported by Mrs Johnston's family, is asking Lord Cameron to rule that it would be lawful to end artificial feeding to "allow Mrs Johnston to die peacefully with dignity and with the least distress".
Mrs Johnston, of Allanton, Lanarkshire, took an overdose in January 1992. She was conscious on admission to hospital but then fell into a coma and doctors have now agreed that nothing can be done to help her.
Press reports:

  • 30 Nov 95
  • 24 Nov 95
  • 8 Sep 95 (inc Law Comm)
  • 29 Aug 95

    Legislative Proposals on Living Wills

    The Law Commission's new paper on Mental Incapacity (England)

    Several years in the making, this 290 page report has been heralded as one of the most thoughtful and thorough analyses of living wills published in this country to date.

    Instead of attempting to push a "new law" on living wills, the Commission has made a thorough examination of the existing law, recognised that such legal provision as currently exists " out of step with modern social conditions and the present day understanding of the rights and needs of those who lack decision-making capacity" and is "unsystematic and full of glaring gaps."

    The Report covers more than just living wills - it looks, for instance, at protecting vulnerable people from harm. But the analysis of the situation regarding advance directives and the principles behind them is transforming and original; yet it is developed from a broad base and so offers little that will seem controversial.

    The remit of the Law Commission was set up in 1965 by Act of Parliament for the specific purpose of promoting the reform of the law. This current volume is an elegant example of the "least amount of legislation to get the job done." Many bills have been put before parliament and rejected because they lacked foundation. The weight of these new statutory proposals derives largely from the excellent foundation, from which they proceed with a logic more like the force of gravity. Secondly they are minimalist: they do not so much suggest major revision of the law as overhaul and clarify existing law by way of statute.

    In a substantial chapter entitled Advance Statements about Health Care the report at a stroke cuts through and highlights the inadequacy of the long-standing debate over whether to use the term "advance directive" or "living will." A disadvantage of both these phrases, says the Law Commission, is that they "concentrate attention on the existence of a piece of paper." The fundamental question is not the piece of paper but the nature and legal effect of the views which have been expressed by the person concerned. There is a strong distinction (echoed by the BMA Code, see page 4 of this issue) made between advance decisions and advance expressions of views and preferences. These differences are more important than whether they are enshrined in a written document, although a document will undoubtedly be an important piece of the picture.

    The Commission recommend that an "advance refusal of treatment" is defined as "...a refusal made by a person aged eighteen or over with the necessary capacity of any medical, surgical or dental treatment or other procedure and intended to have effect at any subsequent time when he or she may be without capacity to refuse consent." The authority to treat is then invalidated if " advance refusal of treatment by the person concerned applies to that treatment or procedure in the circumstances of the case." This approach is put forward as a way of superseding the tests for "validity" and "applicability" proposed in the case known as "Re T".

    An advance decision must be very specific and apply exactly to the situation that has arisen in order to be binding. The Commission recognise that many of the difficulties associated with this do not, fortunately, apply to statements of wishes; but, if the statement of wishes is a such favourable default mechanism, how is it possible to give it legal weight so that a doctor will not ignore it?

    The Commission's solution is an ingenious and lucid interpretation of the law as it now stands, developed into a recommendation that such rules be enshrined in a new law. If there is no valid refusal of treatment then anything done in relation to the health care of a person who lacks capacity to make his or her own decision about that matter must be (1) reasonable and (2) in the best interests of that person.

    But, you will object, many doctors feel that it is in the "best interests" of the patient to treat them irrespective of any living will, especially one that can be challenged as perhaps inapplicable to the exact circumstances that have arisen. So here we have some new rules on best interests. The report proposes that, in deciding what is in a person's best interests, regard must be had to four listed matters, namely:

    (1) the ascertainable past and present wishes and feelings of the person, and the factors he or she would consider,
    (2) the need to permit and encourage the person to participate,
    (3) the views of other appropriate people, and
    (4) the availability of an effective less restrictive option.

    What happens if these criteria are ignored? The conclusions drawn are powerful: "As far as health care is concerned, these new rules mean that treatment will not be lawful unless it is both reasonable and in the best interests of the particular patient. It will not be in the best interests of the patient unless the doctor has taken into account the ascertainable past and present wishes and feelings of the patient and the factors he or she would have considered. If the treatment given is not lawful then the doctor is liable to an action in damages for battery if, as is likely, he or she has touched the patient."

    The new rules are a sensible legal framework from which the whole subject of living wills can be approached. It approaches an ethical structure upon which decisions can be made - this is something in which the legislation of America, Denmark and Australia has been singularly remiss.

    On the question of appointing proxies, or "continuing powers of attorney" (CPA) as the Law Commission would call them, the underpinning is far less rigorous. A loophole in the law, yes; most countries already have some way of allowing individuals to appoint a third party to make decisions of this nature for them, and many have enacted new laws specifically to look at health care decisions. Does the fact that most jurisdictions allow it mean it is right? Does it achieve the result that people assume it does? A great number of studies, several of them approaching statistical significance that cannot be ignored, suggest that the answer is "no".

    When you appoint someone to make decisions for you, "as you would have made them," are you simply abrogating your autonomy in favour of any decision that person would find acceptable, or do you have some sort of confidence that they would make the decision you would have made? Again, studies show that most people have confidence in their proxies to make a sort of "substituted judgement" decision - to "put themselves in the patient's shoes" - yet when presented with hypothetical scenarios proxies are able to score little better than chance. The disparity seems to arise because patients have discussed broad preferences with a proxy ("I wouldn't want to be a vegetable") but have failed to throw light on the greyer, more difficult areas of, say, partial paralysis, bouts of dementia, or other variables that might be the possible outcomes of particular treatments. The popular misconception is perpetuated and remains popular not just with lawmakers but with patients who are inadequately informed about the extreme fallibility of such a decision making process.

    The House of Lords recognised the danger and did not favour the more widespread development of a system of proxy decision making, in spite of the strong current of supporting opinion. The Law Commission depart from this view and say that "...exactly the same arguments could be made against allowing people to delegate their financial powers." They draw up extensive safeguards and protections.
    They say that "We recommend that, unless expressly authorised to do so, no attorney may consent to any treatment refused by the donor by an advance refusal of treatment." There is a presumption against allowing the CPA to make a refusal of life-sustaining treatment, but it can be specifically overridden by the authorisation of the declarant, so the Commission: "...recommend that, unless expressly authorised to do so, no attorney may refuse consent to any treatment necessary to sustain life."
    This still leaves the door open to allow patients to appoint and authorise proxies in the belief that the proxy will make the decisions about life-sustaining treatment as the patient would have done. A better safeguard would have called for communication of detailed values between patient and proxy as is done in the modern "values history" documents (living will type statements that concentrate on the specific, underlying values and life situations rather than medical treatments to be refused).

    If Parliament favours the Law Commission's recommendations on living wills a step forward will be made for patient autonomy; if it also accepts the recommendations on continuing powers of attorney, there is a risk that the good will be undone.

    Addendum: The Scottish Law Commission: Report on Incapable Adults

    Instead of Scotland leading the way as we Scots would expect, this latest volume is little but a pale reflection of the (English) Law Commission's equivalent. True, a few archaic items are tidied up (such as tutors), but other anachronisms are perpetuated or introduced. In deciding whether to give treatment to an incapacitated person, doctors are still exhorted to consult the nearest relative (no mention of "significant other"). One might say they took the weakest part of the English Commission's report (on proxies) and made it worse. The section on advance statements (in which the English Commission showed such brilliant insight and accomplished something of a tour de force in its exposition of best interests) is lukewarm and seems to show only a very basic understanding of the issues.

    Report by C Docker

    © 1995 Chris Docker
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