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‘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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11 Comment on this post

  1. 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?

  2. 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.

  3. 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.

  4. 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.

  5. 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.

    1. And if autonomously gravely ill people make this choice it will mean that society has failed them. That will say a lot more about the people who encouraged them to make this choice than it does them. We would have deprived them of hope, love, and caring. We would have told them their lives no longer were meaningful. Do we really want that kind of future?

      1. Of course one would wish society to be able to provide treatment, care, support, etc but, sadly, ‘society’ cannot prevent all the ravages of motor neuron disease, cancer, etc. I suggest that it is not that life is not meaningful, it is just that there comes a point where the preferable option is to no longer suffer what one is suffering. At that point, I suggest that a humane society should allow an autonomous decision. It is not encouraging people to die, it is caring enough to allow it.
        For some people, knowing that they would not have to suffer a death they do not want, gives great peace of mind and enables a better end of life experience.
        Being very ill can engender a feeling of loss of control over one’s life, mostly people want to take back what control they can: to choose treatment options, to choose where and how to die. To insist that there is an option which is unavailable, denies an important choice.

  6. Firstly, I would like to take issue with intractable pain being “a weak criterion, given modern palliative methods”. There was a time when I endured periods of excruciating intractable pain, 24 hours a day for up to a week at a time, which kept recurring, for years. Modern palliative methods were of little use. I feel it is unwise to dismiss this as a ‘weak’ criterion. I suggest that the reality of intractable pain has to be given proper consideration because ethical discussion should address real life.

    Secondly, there is no indication as to how strongly those responding to surveys/interviews felt themselves to be a burden. It is several years since I read the Oregon papers, I may well be mistaken and bow to more recent readers, but the impression I had was not that so many gave it as a primary reason. I suspect few wish to be a burden to children but that might only be a very minor part of any argument, sometimes mentioned, sometimes not. Even when cited, one does not know just how much weight anyone else gives: 100% or 1%.

    Thirdly, I would agree that the better aim is for people not to feel a burden at all, for society to function in such a way as to provide adequate support, treatment, etc.; and, that the law should be framed to assist in this. However, human beings are as they are and the reality of that has to be addressed.

    I agree with Charles Foster’s acceptance of the perception of being a burden. I am unsure as to then using the argument that the welfare of many trumps the distress of a few. I say this because I would argue that allowing assisted dying would benefit the many who wish to have the choice, (such a choice in itself greatly relieves the mind, without the step actually needing to be taken), as against the possible detriment to a few. If one admits the ‘numbers argument’, then one may have to apply it to all assisted dying arguments.

    Having said this, my initial thought would tend to agree that ‘being a burden’ does not seem to be a sufficient reason to allow assisted dying. Then again, who am I to weigh a perceived mental anguish and deem it unworthy of the final release. Only the person citing it can know just how much it matters to them, how much pain it is causing them; and, perhaps a mental health professional would have a more accurate view as to whether citing such a reason is a smokescreen for other reasons or a cry for help. I would argue that mental pain is on a par with physical pain, with all the issues that surround both: genetic makeup, influence of support, previous experience, access to care, etc etc.

    Lastly, I suggest that autonomy is of paramount importance. I posit that autonomy is behind many of the strong tenets such as disallowing murder, slavery, stealing, etc. I am unconvinced by the argument that autonomy is of less relevance here, citing a hypothetical tussle between wanting to live and not being a burden may not be reality. Wanting to die is wanting to die, giving reasons is not necessarily accurate, perhaps without self-knowledge. Having said that, I acknowledge that the law has to be framed around something concrete: my preference would be to accept the view of the person concerned as to what is insupportable, with all the caveats that are usually cited.

  7. Many thanks for the recent comments.
    Of course autonomy is a crucial principle. Any system of ethics that does not give it a prominent place is frightening. But there should be (contra many commentators) more to ethics than: ‘Respect autonomy’. Human thriving is too rich and complex a business to be so shortly summarised. Such slogans work only for pastiches of humans – not for real ones.
    That said, the main concern of my original post was, of course, to highlight the danger to autonomy that comes from allowing ‘being a burden’ to be a criterion for assisted dying. But if I’m wrong to characterise those dangers as a threat to autonomy, they are nonetheless still a threat that should weigh heavily against assisted dying where ‘being a burden’ is a reason for the request for assisted dying.

  8. Linguistic frame machines

    Too many frame games and euphemisms here, in the post and some of the comments. Too little practical analysis.

    “We are not islands”, “We’re all in this together”, “loving the feeble”, “We’re all dependent on each other”, “the triumph of endurance, the virtue of patience in adversity”.

    These are not arguments, but linguistic hot air balloons. I could rape young girls and use every single one of these euphemisms to justify it. And I would really enjoy raping young girls. I’m sure I would have a blast. But I recognize that there are laws that protect the bodily autonomy of individuals against nonconsensual aggression, and these laws exist for a reason. And ultimately, these laws benefit me, too.

    Unfortunately, you are trying to undermine these very principles, the consent principle and the bodily autonomy of the individual, with the exact same euphemisms.

    Here are some facts for you:

    I do not want to wear a diaper.
    I do not want to endure a catheter.
    I do not want to live bed-ridden.
    I do not want to experience the slow decline of an Alzheimer illness.

    These preferences of mine are just as legitimate and basic as the preference of a young girl not to be raped by me. And yet your pro-life position implies that these things should be forced on me against my will, by banning the only practical alternatives.

    Now, technically speaking, you did not actually suggest banning all suicide methods. For example, even where Nembutal and voluntary euthanasia are banned, one can still get into a car and ram another car at a delta-v of 200+ km/h without a seatbelt on. And yes, it would solve the problem. Or one can jump off a bridge and hope one dies on impact, hopefully without hitting another person accidentally. Or if one is a pilot like Andreas Lubitz, one can ram a passenger plane into a mountain, killing oneself along with dozens of nonconsenting others.

    Surely, you can see the unfortunate unintended consequences of the incentive gradient you are trying to set here. You know your laws are bad if they cause your own citizens to look at their remaining choice set, and rationally conclude, “If I don’t want to be forced to endure a catheter, wear a diaper, go through an Alzheimer experience or live bedridden, then my best remaining choice is to ram my car into another car at full speed.”

    This is madness.

    Now, technically I should not complain because I’m not a Brit and if you oppress your own populace and allocate even more British GDP to nonconsensual health care, this might actually be good for the rest of us by decreasing your international competitiveness. Britain is soon not even a member of the EU anymore, so why should I care?

    But the hard reality is that all these culture wars are now international, and this cannot be undone. What a person at Oxford writes on his blog can have real consequences for my own bodily autonomy hundreds of kilometers away or decades later. This comment is memetic self-defense, and it has to be done globally now. You could say the internet was a mistake, and it certainly was, but there is nothing I can do about that. Even if I ignore it, it will affect my life without my consent.

    My recommendation? Respect the consent principle in the medical domain. We should insist on it in the sexual domain, and we should insist on it in other domains as well. By the way, the UK still allows the nonconsensual spanking of children, i.e. torture-blackmail against the most defenseless demographic. I recommend changing that as well, as soon as possible. And if you want to convince people to wear a diaper or endure a catheter, do so strictly through voluntary communication rather than nonconsensual bans or force.

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