Euthanasia and assisted dying: the illusion of autonomyan essay by Ole Hartling – The BMJ

As a medical doctor I have, with some worry, followed the assisted dying debate that regularly hits headlines in many parts of the world. The main arguments for legalisation are respecting self-determination and alleviating suffering. Since those arguments appear self-evident, my book Euthanasia and the Ethics of a Doctors DecisionsAn Argument Against Assisted Dying1 aimed to contribute to the international debate on this matter.

I found it worthwhile to look into the arguments for legalisation more closely, with the hope of sowing a little doubt in the minds of those who exhibit absolute certainty in the matter. This essay focuses on one point: the concept of autonomy.

(While there are several definitions of voluntary, involuntary, and non-voluntary euthanasia as well as assisted dying, assisted suicide, and physician assisted suicide, for the purposes of brevity in this essay, I use assisted dying throughout.)

Currently, in richer countries, arguments for legalising assisted dying frequently refer to the right to self-determinationor autonomy and free will. Our ability to self-determine seems to be unlimited and our right to it inviolable. The publics response to opinion poll questions on voluntary euthanasia show that people can scarcely imagine not being able to make up their own minds, nor can they imagine not having the choice. Moreover, a healthy person answering a poll may have difficulty imagining being in a predicament where they simply would not wish to be given the choice.

I question whether self-determination is genuinely possible when choosing your own death. In my book, I explain that the choice will always be made in the context of a non-autonomous assessment of your quality of lifethat is, an assessment outside your control.1

All essential decisions that we make are made in relation to other people. Our decisions are affected by other people, and they affect other people. Although healthy people find it difficult to imagine themselves in situations where they do not decide freely, it is also true that all of us are vulnerable and dependent on others.

Yet autonomy in relation to assisted dying is often viewed in the same way as our fundamental right to choose our own course in life. If we are able to control our lives, then surely we can also control our death. Autonomy with respect to your own death, however, is already halved: you can choose to die if you dont want to live, but you cannot choose to live if you are about to die.

Decisions about your own death are not made in normal day-to-day contexts. The wish to die arises against a backdrop: of desperation, a feeling of hopelessness, possibly a feeling of being superfluous. Otherwise, the wish would not be there. Thus, it is under these circumstances that the right to self-determination is exercised and the decision is made. Such a situation is a fragile basis for autonomy and an even more fragile basis for decision making. The choice regarding your own death is therefore completely different from most other choices usually associated with the concept of autonomy.

Here are just some of the critical matters that would arise if assisted dying were legalised.

The possibility of choosing to die would inhabit everyones consciousnessthe patient, the doctor, the relatives, and the care staffeven if not formulated as an out-and-out offer. But if a law on assisted dying gives the patient a right to die, that right may turn into a duty to die. How autonomously can the weakest people act when the world around them deems their ill, dependent, and pained quality of life as beyond recovery?

Patients can find themselves directly or indirectly under duress to choose that option if they consider themselves sufficiently pained and their quality of life sufficiently low. Patients must be at liberty to choose assisted dying freely, of coursethat is how it is presentedbut the point is that the patient cannot get out of having to choose. It has been called the prison of freedom.

Pressure on the patient does not have to be direct or articulated. As pointed out by the US professor of biomedical ethics Daniel Sulmasy it may exist as an internalised external pressure.2 Likewise, the French bioethicist Emmanuel Hirsch states that individual autonomy can be an illusion. The theologian Nigel Biggar quotes Hirsch saying that a patient may truly want to die, but this desire is not the fruit of his freedom alone, it may beand most often isthe translation of the attitude of those around him, if not of society as a whole which no longer believes in the value of his life and signals this to him in all sorts of ways. Here we have a supreme paradox: someone is cast out of the land of the living and then thinks that he, personally, wants to die.3

An inherent problem of autonomy in connection with assisted dying is that a person who uses his or her presumed right to self-determination to choose death definitively precludes himself or herself from deciding or choosing anything. Where death is concerned, your right to self- determination can be exerted only by disposing of it for good. By your autonomy, in other words, you opt to no longer have autonomy. And those around must respect the right to self-determination. The respect refers to a person who is respected, but this is precisely the person who disappears.

Danish philosopher Johannes Slk, who supported legalisation, said, The actual concept of death has no content, for death is the same as nothing, and one cannot choose between life and nothing. Rather, therefore, one must speak of opting out; one opts out of life, without thereby choosing anything else. Death is not something other than life; it is the cessation or annihilation of life.

Autonomy is a consistent principle running through the care and management of patients and is enshrined in law. However, a patients autonomy means that he or she has the right to decline any treatment. It does not entail a right to have any treatment the patient might wish for. Patients do not have the right to demand treatment that signifies anothers duty to fulfil that right. If that were so, autonomy would be the same as autocracyrule of the self over others. Even though patients have the right to reject any intervention, they do not have the right to demand any intervention. Rejecting any claim that the person might make is not a violation of a patients self- determinationfor example, there may be sound medical reasons for not complying with a demand. The doctor also has autonomy, allowing him or her to say no. Refusing to kill a person or assist in killing cannot be a violation of that persons autonomy.

Assisted dying requires the doctors moral and physical help. It is a binding agreement between two people: the one who is to be killed and the one who is to kill or assist in killing. But our society does not condone killing as a relationship between two legally competent, consenting people. Exemptions from the killing ban involve war or self-defence and are not justified on the grounds that the killing is done for the benefit of someone else.

If the action is to be decriminalised, as some people wish, it means the doctor will have to enter into deliberations and arguments for and against a request for assisted dying each time. That is, whether he or she is willing to grant it. The alternative would be to refer the patient to another doctor who might be willing to helpthat doctor would still have to assess whether the patients life was worth preserving.

Thus, autonomy is not the only factor or even always the key factor when deciding whether assisted dying can be granted. It is not only the patients own evaluation that is crucial. The value of the patients life must also be assessed as sufficiently low. This demonstrates the limitation of the patients self-determination.

If a competent and legally capable person must have the option of voluntarily choosing assisted dying in the event of unbearable suffering, why does suffering have to be a requirement? The answer is straightforward: our concepts of assisted dying imply that compassion must form a crucial aspect of the decisionmercy killing and compassionate killing are synonyms. But this leads instantly to the question of why we should not also perform assisted dying on people who are not in a position to ask for it themselves but are also suffering.

Some people find the reasoning unproblematic. It stands to reason that relieving suffering is a duty after all. But in this context it is not unproblematic, because it effectively shifts the focus from the autonomy claimed. According to prevailing ideas about autonomy, patients initially evaluate their quality of life themselves, but ultimately it is those around them who end up gauging that quality and the value of their life. That is to say, the justification for assisted dying is borne on the premise that certain lives are not worth living rather than the presence of a request. The whole point is that in the process, respect for the right to self-determination becomes relative.

Autonomy is largely an illusion in the case of assisted dying.1 A patient overwhelmed by suffering may be more in need of compassion, care, and love than of a kind offer to help end his or her life. It is not a question of whether people have a right to say that they are unworthy. It is a question of whether they have a right to be believed when saying it.

Ole Hartling is a physician of over 30 years standing, doctor of medical sciences at the University of Copenhagen, professor of health promotion at the University of Roskilde, and an author and co-author of several books and scientific articles published mainly in Scandinavia. Between 2000 and 2007 he was a member of the Danish Council of Ethics and its chair for five years. During this time, the council extensively debated the ethics of euthanasia and assisted dying.

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Euthanasia and assisted dying: the illusion of autonomyan essay by Ole Hartling - The BMJ