DIDMSNJ Dying In Dignity Mensa Sig News Journal Vol 3 Issue 2

Euthanasia, withholding and withdrawing treatment and living wills

Agneta Sutton

The word euthanasia, from ancient Greek, means 'good death'. Today, the advocates of euthanasia, who speak of death with dignity, also mean a good death. And of course we all want a good death or a death with dignity. Yet, different people would seem to mean very different things when they speak of a good death or of a death with dignity.

If I propose legislation to give old people, or severely ill people, approaching the end of their earthly journey, the right to a good death or a death with dignity, most people would probably not object. But if I suggest that old people or severely ill people who are approaching their end should be killed, then my suggestion would probably meet with less approval. The word 'kill' has a negative and threatening ring. What this shows is how important it is to be clear about how we use different terms, especially when we discuss serious matters such as euthanasia.

By euthanasia one might mean the intentional killing by a doctor of a patient by an act or omission. However, this was not the definition offered by the Walton Committee, the House of Lords' Select Committee on Medical Ethics, which was set up in 1993 after the famous Tony Bland case. When the Committee reported in February 1994, it described euthanasia as a 'deliberate intervention' rather than as a 'deliberate omission intended to terminate life'. This is noteworthy, for it is also possible for a doctor or a nurse to intentionally kill a patient in his or her care by means of an omission, such as a deliberate failure to give insulin to a diabetic patient.

I shall discuss omissions later, but first let us talk about euthanasia in the sense of active euthanasia, that is giving a drug such as potassium chloride to end a patient's life. Now, the Voluntary Euthanasia Society and the World Federation of Right to Die Societies are asking for active euthanasia and assisted suicide by patient request. But they are careful to point out that they do not wish to introduce anything like the Nazi euthanasia programme. That is to say, they insist that they do not wish to see non-voluntary euthanasia introduced; they do not wish to see patients being 'helped to die' unless they have asked for it. However, they argue that autonomous moral agents should be free to make end-of life decisions for themselves, including euthanasia. Patient autonomy and patient self-determination is what they are asking for. And one reason why they think it is so important for people today to be able to choose to have help to die is that they fear over-interventionist medicine and a prolonged death attached to tubes and gadgets. They fear pain and they fear being reduced to a state of utter dependence. And, of course, we can all sympathise with this fear. But at the same time, it is important to consider carefully whether the reasons the advocates of euthanasia give for legalising voluntary euthanasia really are good reasons.

First, as concerns the fear of pain, with modern pain-relief and palliative care, it would seem that most - though not all - pain can be successfully relieved. Secondly, as regards the fear of dependence, even if nobody wants to be dependent on others for the most intimate of tasks, and even if many of us might consider such a situation undignified, is it not true that each one of us, every human being, possesses an inherent dignity which can never be taken away however undignified his or her situation is? We must distinguish between undignified human beings and undignified or embarrassing circumstances. A person does not become undignified because his or her circumstances are. To take an extreme example, it is very undignified to be raped, but the rape victim does not therefore lose her human dignity.

We must also ask ourselves the question: What are the risks attached to introducing voluntary euthanasia? One of the dangers in introducing voluntary euthanasia lies in the fact that in some situations it might be hard to distinguish between voluntary and non-voluntary euthanasia. The elderly or disabled may come under pressure from society or from their own relatives to ask for 'help to die'. They may be made to feel that they ought to die because they are a burden. And so they may ask for 'help to die'. But should a request made under such pressure be considered voluntary?

And this is not the only problem; voluntary euthanasia may lead to what is without a doubt nonvoluntary euthanasia. The advocates for euthanasia say that there is no reason why this should happen. But there is. No doctor would grant a patient's request for euthanasia, unless he or she believed that the patient's life was of poor quality and not worth living. For if the doctor helps a cancer patient who asks for it to die because he thinks the patient's quality of life is so poor that he would be better off dead, would it not then also be reasonable for the doctor to help another cancer patient in a similar state to die, even if that patient has not asked for it? If the doctor feels that he is acting out of mercy in the case of the patient who asks for euthanasia, why should he not also wish to be merciful to the other patient who has not asked for it?

You can see the problem. If you allow mercy killing on request, it may seem cruel not to allow mercy killing which has not been requested. And yet would it not be rather dangerous if doctors and nurses were allowed to kill patients because they felt pity for them? In other words, it would surely be wrong to allow some members of society, say doctors, to kill other members of society, say patients, out of pity or because they thought some patients had lives not worth living. Surely, if we allowed this to happen, we would end up with a situation not unlike Nazi Germany. And, do you not think that many people would stop using the health services or refuse going to hospital, if doctors were allowed to end the lives of patients whose lives they considered to be of a poor quality? Is it not true that, if we allowed doctors to kill, doctors might no longer be trusted?

The fact that voluntary euthanasia seems to lead to non-voluntary euthanasia becomes even clearer if one looks at the situation in the Netherlands, where the law for a number of years has allowed voluntary euthanasia, even if strictly speaking the practice is not legal. That is to say, provided certain conditions are fulfilled, a Dutch doctor who performs euthanasia will not be prosecuted and penalised. One requirement, at least until recently, was that the patient must be terminally ill and dying. Another requirement - at least until recently - has been the free, explicit and repeated request the patient.

But let us look at the famous Remmelink Report, published in September 1990. This report on end-of-life decisions in the Netherlands, defined euthanasia as an active intervention to terminate another person's life, performed upon the latter's request. However, as the Report showed, the lives of thousands of patients were actively ended without their request. Should we be surprised? No, for, as I explained, once you introduce voluntary mercy killing, it will seem natural to administer mercy killing even if patients have not asked for it.

Of course, doctors should do what they can to alleviate suffering. And it is a well-known and widely accepted practice to provide high doses of pain-killers to, for example, cancer patients. In some cases, this may apparently shorten the patient's life. But if this happened, would it be euthanasia? The answer is that it depends upon the doctor's intention. It depends on the intention with which the doctor gives or prescribes the pain-killer. If the intention is simply to relieve pain and if no other means exist, then it can be argued that it is not death but pain-relief that is intended and that the death, if it follows, as to be regarded as an unintended side-effect of giving pain relief.

Arguing against this distinction, advocates of euthanasia might say that the doctor's intention could be mixed. However, to meet this objection, it should be pointed out that there is a difference between providing adequate pain-relief with drugs such as opiates which are analgesics, and giving drugs such as potassium chloride which are not analgesics. If the doctor gives analgesics, then this is an indication that his intention is not to kill. If, on the other hand, he uses potassium chloride, it would be obvious that his intention was to kill. In other words, it seems good sensible practice to distinguish between pain-relieving and life-relieving drugs, when discussing euthanasia.

To return to the Dutch law, which allows euthanasia with life-relieving drugs, it is in fact becoming more and more elastic. Patients used to have to be terminally ill, before being granted a request to receive 'help to die'. But a couple of years ago a doctor was cleared of legal charges after having helped a depressed, but not otherwise ill, woman to die. The woman was a widow who had lost her two sons one after the other, and who felt she no longer had anything to live for. Of course, we can all sympathise with her plight. Yet we also know that people can live through grief and come out of depression and again be grateful for living, despite their past. A law which allows euthanasia on request in the case of depression risks depriving lots of people of worthwhile futures.

To turn to withholding and withdrawing treatment, as opposed to active provision of drugs to endlife. Let us start with 'living wills' or advance directives as they are also called. Such directives concern non-treatment. They state that under certain specified conditions, the patient does not wish to be resuscitated, and wishes to forego treatment aimed at prolonging or sustaining life. That is to say, they state that the patient declares now, while of sound mind, that if he were to become mentally incapacitated and unable to express his wishes, he would not wish to be resuscitated or to receive life-sustaining treatment under such and such conditions. Are such documents helpful and would it be a good idea to make them legally binding?

It is partly because people might change their minds that many people argue that such advance directives would not be a good idea. Earlier this year the Government decided not to introduce the Law Commission's Bill on Mental Incapacity, which would have made advance directives legally binding. The decision went against the recommendations stated in the British Medical Association's Code of Practice of April 1995, which suggested that advance directives are legally binding according to common law. That is to say, the BMA pointed out that patients of sixteen years or over and of sound mind have a common law right to refuse treatment. And so they argued that, if people refused certain future treatment options while of sound mind, then their request should be respected when they were no longer capable of making an informed decision about their treatment. However, as the law stands today, it seems unclear whether advance directives are legally binding.

Leaving the legal status of advance directives to the side, let us discuss their advantages and disadvantages. Those who argue for advance directives argue for patient autonomy and against medical paternalism. Moreover, it is often pointed out that such documents might be helpful for doctors and nurses when a mentally incapacitated patient is suffering from malignant disease or AIDS or from an advanced degenerative disease of the nervous system, or severe and lasting brain damage, or severe senile or pre-senile dementia. If he or she has made an advance statement, it might make it easier for the doctor to decide how to treat the patient.

Against these arguments, others point out that individuals who draw up advance directives are not making informed decisions, because they cannot know in advance precisely what situations they may face. Hence, they argue, an advance directive could actually amount to a blank cheque for the doctor, which would be contrary to what would have been intended by signing an advance directive. That is, some people hold that advance statements could protect doctors from legal suits and make it easier for them to decide on non-treatment. In other words, there are those that argue that advance directives would actually protect the doctor rather than the patient.

As I also said, people's attitudes may change. The thought of a lingering death or a few months of slowly dying might seem futile to a healthy person. And so many a healthy person might think it is a good idea to sign an advance directive to the effect that in the case of a degenerative illness such as senile dementia, he or she would not want to receive even, for example, antibiotics. Yet, it is probably true to say that many people with such conditions are quite happy to be living.

Another objection to advance directives is that the put the onus on the patient to demand a certain type of care. But are doctors and nurses not under a professional obligation to provide the most intelligent and compassionate care they can give? And if so, surely doctors and nurses ought to seek to avoid administering futile treatment or prolonging suffering when there is no real hope of recovery.

However, this does of course raise the question of where to draw the line between euthanasia by omission and other omissions, as well as the question of whether tube-feeding should be regarded as medical treatment or as basic nursing care which can never be withheld.

In the famous case of Tony Bland, who had been in a persistent vegetative state for three years, the High Court and the Law Lords seemed to argue that artificial nutrition and hydration is to be regarded as treatment rather than as nursing care, and ruled that it was in the patient's bestinterests that fluid and nutrition be withdrawn in order not to prolong his life. The case was not intended to set a precedent. And some of the judges who had been involved in the case were worried about the fact that matters such as these were decided in the courts and recommended that it was for Parliament to debate and decide these issues. The establishment of the House of Lords' Select Committee was a move in this direction. As you know, the Select Committee opposed the legalisation of active euthanasia and assisted suicide, but did not pronounce on deliberate death-causing omissions.

So we are still left with the problem of drawing a line between euthanasia omissions and non-euthanasia omissions. Well, it seems reasonable to suggest - and it seems to be the practice in hospices - not to provide medical treatment which no longer corresponds to the real situation of the patient, either because it is disproportionate to any expected results or because it imposes an excessive burden on the patient. For example, when death is clearly imminent and inevitable, it seems reasonable to forego treatment that would only secure a precarious and burdensome prolongation of life.

Indeed, if the patient is dying, even food and fluids could be justifiably withheld if giving such sustenance was futile and burdensome. That is to say, according to hospice ethics, it is justifiable to forego medical procedures which are disproportionate to any expected results, and it is justifiable to forego medical treatment and even food and fluids to avoid imposing an excessive burden on the patient.

Take the example of a terminally ill cancer patient whose painful death is being prolonged by artificial feeding. The patient's life might be prolonged by weeks. If the patient expresses the wish no longer to be artificially fed, then his request would be granted. For the feeding will not prolong his life for very long anyway, and what would be the point in prolonging the process of dying? In this situation, provision of food and fluids could be described as both futile and too burdensome.

Of course, in some situations it may be difficult to say whether a treatment is too burdensome. In this respect the suicidal person poses a special problem. For he or she might describe just about any treatment as too burdensome. Here I think that wisdom, experience and compassion are required to decide whether a certain treatment is or is not too burdensome. What is required is care based on shared understanding of the sick person's suffering - and this understanding only comes with experience.

In November 1995, my centre, the Centre for Bioethics and Public Policy, organised a conference in Brussels. The theme was euthanasia and there were a number of British experts on palliative care in attendance. Interestingly, they all testified to the fact that good palliative care is the best answer to a demand for euthanasia. The request for euthanasia is usually a request for help,they said. When receiving good palliative care, even depressed terminally ill patients seem to regain a taste for life.

However, if the patient cannot speak for himself, the situation is quite different. How is one to decide what constitutes disproportionate treatment in those circumstances? Here there is no question of the treatment being too burdensome. What matters here is whether it is proportional to expected results. If a certain treatment gives hope of recovery, it should obviously be given, but otherwise their is little point in it. In other words, if a dying patient gets pneumonia, there is clearly no point in giving him antibiotics. And to take the difficult situation of a PVS patient, if one can be sure that there is no misdiagnosis, then even in this case it might be argued that giving antibiotics to overcome pneumonia would be pointless, for it would not help the patient to get over the main irreversible and severe condition from which ne is suffering.

But could the same argument be applied to food and fluids? Is the provision of food and fluids more basic than the proivision of antibiotics and indeed so basic that we cannot deprive a person of food and fluids unless he is dying and has asked for it? If the food and fluid were to make the patient more comfortable there would certainly be a point in it. But if it obvious that feeding him is futile and will only prolong the process of dying, then it cannot be in the patient's best interest to pump food or fluids into him only to prolong the inevitable.

A PVS patient, however, is not actually dying, though he will forever remain in a state of unawareness of the world around him. So the question is whether in this situation tube-feeding should be regarded as obligatory care. The answer is that the kind or level of care that should be provided must be decided by considering a number of circumstances. Those who are in the caring professions know that experience is the only teacher of good judgement in the concrete situation. And to argue that withholding or withdrawal of food and fluid from PVS patients might in some circumstances be justified, would not be the same as advocating euthanasia by omission.

Take the case of a patient who has been in a PVS for five years. Is it right to keep him in such a state of suspended animation for years and years to come? Is it right towards the patient, and is it right towards the relatives? And is it right to provide nursing care indefinitely for a person in that state if there is a shortage of staff or other resources? These are big questions - and it is not for me to provide all the answers.

But let me repeat, what matters here is experience coupled with a caring attitude. Without experience, which can only be gained by practice, it is impossible to understand what treatment might improve or ease a patient's condition and what is futile treatment, or to understand what is medically possible and what is not. As to the attitude required in caring for the gravely ill and those who suffer, it is that of the Good Samaritan. The Good Samaritan was moved by compassion and recognized the injured man by the wayside as his neighbour, as a fellow human being, and treated him as he would have wanted to be treated himself.

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