Some recent dying cases

Brongersma involved a rather extreme example of requests for dying within a jurisdiction which permits euthanasia. Recent UK cases shed light on the values which should guide end of life decision making. I will argue that the Dutch Supreme Court was wrong to deny euthanasia to a man tired of life, but first I will review some other more common cases.

1. Case E. June 2012. Judge Rules Anorexic Woman Should be Force Fed Against Her Wishes5

This is the case of a 32-year-old ex-medical student. She had a BMI of 11.3 (a normal BMI is around 20, and below 17.5 is considered in the anorexic range). She did not seek death, but was aware that she would die if not fed. She preferred above all not to eat. Her relatives wanted to allow her to die with dignity.

The local authority brought the case to court as they were concerned her interests should be investigated and protected. The judge appealed to balancing the objective value of life with her personal independence. He acknowledged privacy and self determination would be affected, and that there would still be long term health problems, but said that though treatment would be burdensome it was likely to succeed. He believed her life was worthwhile even if she did not realise it. She was deemed incompetent and she was force fed.

2. Case L. August 2012. Judge Rules Anorexic Woman Should be Force Fed Against Her Wishes6

L was 29 years old. She weighed 20 kg. Since the age of 14 years, 90% of life had been in inpatient care. L was not refusing food and drink in order to die but her anorexia did not allow her to eat. She agreed to 600 calories per day through a tube which would probably not allow her to maintain her current weight.

The hospital Trust and parents both agreed that force feeding was not in her best interests.

The Court ruled that treatment should continue but should fall short of physical force. If her condition became terminal, she should be provided with palliative care and allowed to die.

3. Tony Nicklinson.7 Tony suffered a stroke aged 51 years, in 2005, and was left in locked-in syndrome. He was fully conscious but unable to move. He died aged 58 years after having refused nutrition and hydration and antibiotics, having lost a court battle to give his doctor immunity if they assisted his suicide.

His wife said his death was ‘pretty unpleasant but thankfully quick’.

The case argued for the necessity of euthanasia as Nicklinson was unable to commit suicide himself. The judge said the case was extremely moving, but that a decision to allow the claim would have consequences beyond this particular case. A change of that magnitude, the judge argued, required parliament to make the changes.

The British Medical Association welcomed the decision, and said that doctors should not be able to legally end a patient's life.8

There have been a number of other high profile recent cases that contribute to case law:

1. Diane Pretty was terminally ill. She wanted her husband granted immunity if he assisted her suicide. This was refused.9

2. B was tetraplegic. B wanted to stop artificial ventilation and went to court because the treating doctors refused. The court allowed treatment to be stopped, and awarded damages to mark the fact that B had been unlawfully treated by the NHS Trust.10

3. Z suffered from cerebellar ataxia, a degenerative disease, which attacks motor functions. Z wanted to travel to Switzerland for assisted suicide, but the local authority raised an injunction against travel. This injunction was overturned.11

I will consider whether the outcome of these cases could have been different had it involved a refusal to eat and drink

Refusal to eat and drink plus palliative care—voluntary palliated starvation

Every competent human being has a human right not to be force fed. This could be a basic right or derivative from the right not to have one's body invaded or violated without one's consent. One of our most basic interests is control over our own bodies. Thus, our body should not be subjected to the will of another without our consent. This is so on either Kantian or consequentialist grounds (though Kant himself and some modern Kantians think suicide in many cases is morally wrong).

There is a basic moral principle of inviolability of the person: It is impermissible for one person, A, or several people, B–D, to insert any part of their body, object or substance into the body of another competent person, X, without X's consent.

(A more formal version is: It is impermissible for one person, A, or several people, B–D, to perform an act which involves foreseeably and avoidably inserting any part of their body, object or substance into the body of another competent person, X, without X's valid consent.)

This rules out non-consensual penetration of the vagina, anus, mouth and even skin. This grounds the crimes of rape, assault and battery in law. Thus, this principle of the inviolability of the person has crystallised in common law. In the case of Schloendorff v. New York Hospital, Justice Cardozo observed back in 1914, ‘Every human being of adult years and sound mind has a right to determine what shall be done with his own body.’12 This common law principle grounds the requirement that a person must give willing and informed consent before a medical procedure is performed upon him. According to the common law principle expressed in Schloendorff, a patient ‘of sound mind’ can refuse any medical treatment, even such treatment necessary to save his life. This occurs when healthy Jehovah's witnesses are allowed to refuse life saving blood transfusions on religious grounds.

In fact, the moral principle of the inviolability of the person was, appropriately, a part of the judgement in the case of E: People with capacity are entitled to make decisions for themselves, including about what they will and will not eat, even if their decision brings about their death. The state, here in the form of the Court of Protection, is only entitled to interfere where a person does not have the capacity to decide for herself.13

Since Schloendorff, the concept of informed consent has moved from being professional-centred to patient-centred. Patients must now be given information that they would consider relevant to their decisions, not what professionals consider relevant14 and the range of treatment options has probably widened.

Every competent person thus has the right to refuse food and fluids. Hunger strikers do this for political reasons. But it is not the political cause which justifies their being allowed to die. It is the interest and right they have in their own body. Thus a person could refuse food and fluid for personal reasons and this refusal is equally entitled to legal and political respect. People should not be force fed against their own autonomous wishes.

Take for instance, the case of Tony Nicklinson. In the end, Tony appears to have refused to eat or drink, because he wanted to die, because he found a life locked-in to be intolerable. Without assistance, he would have died over days to weeks. But his death was ‘mercifully quick.’15 We don't know exactly how he did die. But given that his death was inevitable from either infection or starvation/dehydration, he should have been given medical treatment to make his time as comfortable as possible. He should have been given palliative care in the form of sedation and analgesia. He could even be given such doses that render him unconscious.

The lesson is that any competent person has the right to refuse to eat and drink, leading to their death. And given that they will certainly die if they do not eat and drink, they are entitled to relief of their suffering as a part of medical treatment as they die. This can be achieved through palliative care involving sedation and analgesia, perhaps even so-called ‘terminal sedation.’ This could be called Voluntary Palliated Starvation. Tony Nicklinson may have been one of first and the most notable cases of such Voluntary Palliated Starvation. At least let's hope it was not a case of unpalliated starvation.

One might object that medical care should not be provided to those who inflict their suffering upon themselves. However, this would preclude much of current medical care: provision of care to smokers, alcoholics, obese people, those who engage in risky activities (including sexual activities), those who harm themselves through physical violence, and so on. Clearly doctors have an obligation to relieve suffering, whether or not it was self-inflicted.

The conjunction of the right to refuse food and fluids and the right to relief of distress through provision of medicine (in this case, palliative care), may be tantamount to a right to assisted dying.

This applies not only to people who have a terminal medical condition but also to people, like Tony Nicklinson, with a severe non-terminal physical illness. But the right could apply to mental illnesses including anorexia, in cases in which the mentally ill person is judged to be competent. And it could apply in cases of advanced ageing, and perhaps even in cases where there is no suffering at all. What is critical in legal terms is whether the person is competent. What is critical in ethical terms is whether their decision is autonomous. For clinical practice, independent, competent determinations of competence are critical. A patient refusing nutrition and hydration in order to end her life runs the risk of being deemed incompetent just because she wants to end her life. A patient who is terminally ill, or suffering from a condition like motor neuron disease, or even just tired of life is unlikely to be deemed incompetent and so forcibly prevented from acting on that strategy. However, a teenage anorexic may well, however, be forcibly prevented from so doing because anorexia is considered a psychiatric illness and the teenager's competence will likely be challenged. So, determinations of competence are critical in cases of psychiatric illness. Some anorexics, perhaps many, are competent and psychiatric illness does not necessarily render a person incompetent. The competent wishes of people with psychiatric illness should be respected, even wishes to die, or choices which foreseeably result in death. Psychiatric illness can be a good reason to want to die, just as physical illness can be.

A striking example is the Dutch case of Dr Boudewijn Chabot. Dr Chabot was convicted in 1994 for assisting the suicide of a physically healthy patient, Mrs B, who was allegedly severely depressed over the deaths of her two sons.16 Euthanasia was tolerated under Dutch law at that time. Whether Chabot was morally justified, and whether the judgement was incorrect, depends in part on whether Mrs B was competent.17

The case of Brongersma is instructive. He was a convicted paedophile. He apparently became dispirited when attempts in his later life to ‘liberalise legislation on public morals and the rights of paedophiles’ failed.18 Whether Sutorius should have been convicted of a crime turns on whether Brongersma was competent to request to die. Of course, whether a doctor should morally accede to such a request in a jurisdiction that assists dying turns on whether the person has a good reason to die. Existential suffering, ageing, loss of one's ideals could all be good reasons to die, in certain circumstances.19 ,20

It is thus important to distinguish between what doctors should be permitted to do by law in end of life care (this should be governed by the competence of the patient and distributive justice) and what they should morally choose to do (this should be governed by whether the person has a good reason to die). Thus doctors might legitimately choose not to support a dying patient who has chosen to die by providing palliative care or other medical treatment if they believe that person is acting for bad reasons. However it should not be illegal to lend such assistance if the patient is competent.

Some people would deny that a person has the right to kill themselves. Some religious people might believe that we do not own our bodies because they are the property of God. Thus we must remain trapped in them, until God chooses to release us. But today, suicide is no longer a crime and religious arguments about God's ownership of our body are no ground for public policy in a secular society.

This is best seen in the famous case of Tony Bland. Law lords authorised the removal of a feeding tube that was keeping alive Tony Bland, who was permanently unconscious. They, his family and doctors all judged that continued life was not in his interests. The process of withholding or removing artificial feeding from patients as young as newborns to elderly people has been commonplace in medicine in many parts of the world. The Bland judgement made it possible for doctors to cause the death of a patient by removing feeding without being liable for murder. (In a spectacular example of bad reasoning, the legal judgement was that the act of removing the feeding tube was not an act, it was an omission, and so the removal was not murder.21 However, if a third party had removed Tony Bland's feeding tube, for reasons of some personal gain, that person would seem to have been guilty of murder.)

Now if doctors, courts and family members can make a decision that a person's life is no longer worth living and feeding should be stopped, why can't the person, like Tony Nicklinson, make that decision, and it be acted upon? Surely the person who has the most right to decide whether life is tolerable is the person who must live that life.

So it seems to me that ethically Tony Nicklinson had the right to die by starvation. And if other patients received palliative care in the form of analgesia and sedation as a result of decisions made by courts, doctors and their families, then Tony Nicklinson had an equal right to such palliative care as he died.

So it appears that competent people have the right to die, with medical support, over a period of weeks by starvation. But this principle should extend to decisions made in advance. According to medical ethics, competent people have the well established right to refuse medical treatment now and in the future by the formation of advance directives or living wills. This principle should apply to the refusal of food and fluids in advance. They should also be allowed to stipulate the conditions under which, in the future, they should not be fed. This could be called a starvation advance directive. They could stipulate, for example, that if they ever became unable to express themselves, or care for themselves, or recognise their family, they should no longer be fed. They would then die, over a period of weeks, with palliative sedation and hydration.

In practice, advance directives have probative force in very few jurisdictions. So the right of the competent to refuse medical treatment and nutrition and hydration is apt to be exercisable only by those competent at the time the choice has to be made. Until advance directives are acknowledged in law as having probative force, the possibility of expressing one's wishes in advance governing dying will likely only be available to those deemed competent at the time of the refusal. It is very easy to proclaim an advance directive invalid by claiming that a person's wishes may have changed or it was not formed with full information about the future state, or under duress.

But what, you might ask, is the difference between Tony Nicklinson dying by starvation, perhaps unconscious, over a period of weeks and him being given a lethal injection that would kill him in seconds, painlessly? In both cases, he will certainly die. Surely it is more humane, in these circumstances, to give him a lethal injection than to allow him to starve himself to death?

This is the argument of course from suicide, to assisted suicide, to euthanasia. That is, it seems that if one has a right not to eat, then one has a right to euthanasia, at least as far as morality is concerned.

The law of course would classify such killing as murder. For that reason, it is not performed in the UK and most other jurisdictions. But ethically, if a man such as Tony Nicklinson has the right to refuse to eat because he finds his life intolerable, then he also has the right to be relieved of the suffering of starvation, quickly and painlessly. In effect, he has the right to die. And so do all of us.

The current law in most countries doesn't allow Voluntary Palliated Starvation and won't allow it in the near future. However, what we have is a potential gap in the law which some consider addresses the common concerns of euthanasia and assisted suicide. It should be discussed further, whatever one's view on euthanasia/assisted suicide. Perhaps we don't even need legislation for assisted suicide and euthanasia. We need only to respect competent refusals to eat and drink, and feeding advance directives. And of course to provide appropriate palliative care to dying patients. Or, of course, we could legalise assisted suicide and voluntary euthanasia…