‘Being a burden’: an Illegitimate Ground For Assisted Dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Divisional Court. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives one’s private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time –  and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers.

A recent systematic review of the literature concluded that 19-65% of terminally ill patients felt that they were a burden to others.  The 2016 Report relating to the Oregon Death with Dignity Act  says that 48.9% of patients whose lives were ended under the Act cited  ‘being a burden’ as one of their concerns.

Concern about being a burden should not be a criterion justifying assisted dying. That ‘being a burden’ is in the minds of so many patients at the end of life is a depressing index of the breakdown of familial obligations and expectations in the western world. It would have been unthinkable in most cultures and at most historical times. It is an artifact of an atomistic view of the self which is biological gibberish and sociological poison. We are not islands. We were all dependent as fetuses and children, and are dependent now on other road-users, pilots, doctors, genes, and the weather. No system of law or ethics that relies on a caricature of basic realities is likely to produce good results.

One of the functions of the law is to express the fundamental values of a society. By expressing those values, the values can become better entrenched and disseminated. To allow the law relating to assisted dying to take account of a desire to die that has been generated by a feeling that not to die would be to be a burden is to allow the law to endorse the conditions that result in the feeling. That, as a matter of public policy, the law should not do. The law should be framed in such a way as to encourage the attitudes in families and carers that make impossible the feeling ‘I’m a burden’.

One might say that to die to avoid in fact being a burden to others is a commendably altruistic thing to do. Certainly, as a general principle, altruism should be encouraged by the law.  But in the circumstances where assisted dying is a consideration, the good of a heroically selfless act is massively outweighed by the encouragement to selfishness and the abdication of familial responsibility entailed in saying that perceived burdensomeness can justify assisted dying.

One might say, too, that however desirable it might be to eliminate the conditions that make self-perceived burdensomeness possible, the reality is that some patients will always, rightly or wrongly, have that perception, and that the distress caused by that perception should itself, as an act of mercy, justify the legal remedy of assisted dying.

This is a bad argument. It sets the distress of a few above the welfare of many, and above the ethical health of a society.

So: the law should not regard perceived burdensomeness as a permissible reason for assisted dying. And one might think, given the very high incidence of this reason in the reports of patients’ reasons for seeking assisted dying, and the possibility that it is a contributory factor in the minds of those patients who cite other primary reasons for seeking death, that this consideration is an argument against assisted dying per se.



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6 Responses to ‘Being a burden’: an Illegitimate Ground For Assisted Dying

  • Owen Schaefer says:

    While I agree the law should not use burden as a criterion for when assisted dying is to be permitted, it’s not so clear people having ‘wrong sorts of reasons’ are generally good grounds to disallow something under other conditions. Especially if it’s an autonomy-based right at stake; many exercises of basic freedoms are ill-advised.

    And, the concession to potential altruism in burden motives is countered above by the suggestion that recognizing burden in the law is pernicious. But what about the law ignoring burden, as i believe most regimes permitting assisted dying do?

  • Owen: many thanks.
    (a) Autonomy should be truncated. That, after all, is the principal function of the law.
    (b) The truncation of autonomy in these circumstances is less worrying than in most others, since where ‘being a burden’ is a reason for seeking assisted dying there is likely to have been a tussle between the patient’s own desire to continue to live and her wish not to be a burden. Thus to refuse the request for assisted dying is to support one of the warring factions in the patient’s mind – both of which are driven by her autonomy.
    (c) Re ‘ignoring burden’: the law shouldn’t ignore it. It should acknowledge that it is likely to be an issue. It should look for it. If it is found to be present and to contribute materially to a decision to request assisted dying, the request should be refused.

  • Rita Joseph says:

    Thank you, Charles, for an excellent presentation of the limits on autonomy and the dangers of accepting and entrenching the ‘being a burden’ argument for medicalized killing of ‘the burden’.

    Laws permitting the medicalized killing of suicidal persons who are terminally ill will alter most unjustly our present social environment in which the terminally ill are entitled unconditionally to whatever palliative care and other resources are necessary. Social environmental economists might recognize in the making here a tragedy of the commons. Legalized medical killing of the terminally ill sets a socially engineered trap, in which individual interests freely and legally gain access to a public resource (a health care system that provides unconditional specialized care for the terminally ill) and proceed to change drastically the ethos of that public resource—to change it from unconditional palliative care to a dangerous combination viz., optional care together with the option of medically assisted suicide.

    A tragedy of the commons will unfold as the terminally ill are pressured subtly to accept the cheaper swifter option. This will lead eventually to the complete depletion of the shared resource—the end of a truly universal, unconditional and beneficent system of care for the terminally ill. A gradual reduction of specialized clinics, hospices, palliative care resources and research dedicated to the needs of the terminally ill is therefore a typical “externality” – i.e., the unintended and negative consequence of private decisions that ends up affecting everyone.

    Inexorably, more research resources, more clinics, more medical personnel will be directed towards the science of killing (ktenology)—the science of annihilation—as fewer research dollars, fewer palliative care facilities, fewer medical professionals are dedicated to looking after the terminally ill with true compassion which often requires a loving patience that does not seek to hasten or to abend abruptly or conveniently the natural process of dying.

    Decriminalization of the medicaizedl killing of the terminally ill who are suicidal must lead to an immense paradigm shift in the ethical webbing that holds together our communal health care system. To remove the human rights principles of the inherent dignity and worth of all human beings and the equality of all human beings (irrespective of an individual’s impaired quality of life or negative prognosis) is to begin an unravelling of the common good that has been painstakingly established over years of careful effort. Laws allowing and (implicitly) encouraging medicalized killing destroy an important aspect of our civilization’s heritage—the profound good will that has been forged towards the terminally ill, the very vulnerable, the very young, the very old, the very disabled. Such laws are an attack on the fundamental human rights principles of human dignity and worth that inhere in every human being, in all members of the human family from conception to natural death irrespective of externalities and individual circumstances—human rights are inherent and belong to all human beings precisely and only because they are human beings.

    The great paradigm shift that will be wrought by legalizing medicalized killing involves the abandonment of principles of goodness of life, the triumph of endurance, the virtue of patience in adversity, of helping others in pain and distress, of loving the feeble, the discouraged, the incapacitated, the needy. It is our humanity that recognizes that we are all in this together—that we must go on carrying with us the very old, the very young, the terminally ill and all those who are troubled and in distress.

  • Sue McKeown says:

    Excellent article and excellent comment, Ms. Joseph. Mr. (or Dr. Foster), I’ve often used the same argument you have about autonomy to say that we are never truly autonomous when discussing opposition to assisted suicide, but you said it more eloquently than I ever could.

  • Hilary says:

    If objective truth is found within the person as is publicised by modern secular society I can see why so many persons do not want to be a burden to others and the state. Habits of thought that revolve around “Me , myself and I” cannot cope successfully with illness much less long term illness, hence the request. The basis of that request is not primarily the demands being made on loved ones- and some of those demands are real- but rather the loss of autonomy and power and also the acute sense of loneliness when illness occurs. Seeing that the law of most juridsictions are unclear about medicalized killing and may people do not believe in a God who loves them, I suspect more and more autonomous gravely ill persons will take that decision into their own hands in the years ahead.

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