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How do we decide the value of death (and life)?

Allowing people with incurable and unsupportable illness to die is ethically acceptable to most people, even though it’s unlikely there will ever be unanimity about when and how we allow such deaths. But…

We live in an era when chronically ill people are exposed to technological interventions that may not serve them well. Carlos Fonseca/Flickr, CC BY-NC-SA

Allowing people with incurable and unsupportable illness to die is ethically acceptable to most people, even though it’s unlikely there will ever be unanimity about when and how we allow such deaths.

But as we move into an era of treating chronically ill people with technology that tempts us to try achieve the hopeless, it’s more important than ever that we talk about what kind of death (and life) is acceptable to us – and why.

Treatment is withdrawn or withheld in the expectation of death about 40,000 times a year in Australian hospitals. That’s about 110 people every day, or one every 13 minutes.

These are mostly people with chronic diseases for whom either nothing more can be done (withholding), or for whom more has been done but without success (withdrawal). The overarching ethical concept here is the futility of medical care, which is, at least to some degree, independent of the patient’s own views and wishes.

But sometimes a patient takes the lead role in determining what is futile – as in the recent case of a young man who asked for the mechanical ventilation keeping him alive to be turned off, in full knowledge of the consequences.

JS' story

According to a newspaper report, JS was quadriplegic and had been dependent on a ventilator since the age of seven. Twenty years on, and with deteriorating health, he had had enough and demanded his ventilator be taken away, saying:

Please give me the control over the care that I receive that every other patient is afforded, and I know is my right.

There was no doubt about his capacity to make such a decision, or about his understanding of the consequences. But a court order was required before the hospital felt safe to honour his demands. But the other 109 people who died of treatment withdrawal that day had no such legal sanction, so what was different about JS?

The medical and nursing staff at the hospital concerned were supportive of his decision, having cared for him for such a long time, and having witnessed his increasing suffering and disability.

Nonetheless, there were concerns that allowing his death by removing life support could be seen as “aiding and abetting suicide” – a criminal offence that could result in imprisonment of the doctors and nurses involved.

But given withdrawal of treatment is not uncommon and that, in JS' circumstances, it seemed entirely appropriate, was this legal concern even justified? After all, other such cases don’t typically end up in court.

Perhaps there’s a more nuanced interpretation of the situation: members of the Australian community, which includes medical and lay people, have a broad spectrum of comfort zones when it comes to allowing death through medical treatment withdrawal.

It’s unlikely there will be ever be unanimity on how we feel about death. leiris202/Flickr, CC BY-NC-SA

So when a case like this “goes public”, there will be at least some people in the hospital and broader community who find the decision to withdraw treatment unsupportable.

There is indeed enormous variation in practice from country to country, hospital to hospital, and doctor to doctor in terms of willingness to withdraw treatment. This ranges from one extreme in Israel, where it’s actually illegal, to Australia and other English-speaking countries, where it’s pretty much the un-discussed norm.

Putting a value on life

A good deal of this variation is associated with religious conviction, often under the umbrella slogan “right to life”. In Australia, this is linked with the notion of “sanctity of life”, a term without explicit Biblical roots but given substance by St Thomas Aquinas in the religious world, and by Immanuel Kant in the secular.

More exactly, it’s about the sanctity of human life rather than all life, since we don’t extend this to dandelions, ants or sheep – although primates are a marginal case in some countries. The more secular expression is the “inviolability of human life”.

Irrespective of whether you approach the issue in religious or secular terms, the inviolability of human life is an enormously important concept in both ethical and legal terms. And it must be distinguished from a “vitalist” stance, which is a purely religious notion without a secular (ethical) equivalent that considers all human life to be of infinite worth without heed to the quality of that life.

This claim is based on the belief that we don’t own our lives or bodies as they are gifts from god. So we’re not empowered to make end-of-life decisions other than those that require we be actively treated until our last breath.

The vitalist stance is inconsistent with humane and ethical care for those approaching the end of their life in the modern era, where chronically ill patients are exposed to technological interventions that may not serve them well.

And it stands in contrast to the sanctity of human life position, which not only allows for, but encourages a judicious use of life-prolonging treatments at the end of life. If human life is inviolable, we are charged with the responsibility to ease its end, not to prolong it mercilessly.

Clearly, the inviolability (or sanctity) of human life is a crucial notion for equity in health care, strongly linked to treating those with disability and misfortune fairly. But while we must try to understand vitalist views, it’s essential that we don’t confuse the two.

It’s perfectly consistent to respect the inviolability of human life and withdraw treatment in the expectation of death; we can’t question the value of a human life, but we must sometimes question the value of continuing medical treatment, just as JS did.

Join the conversation

5 Comments sorted by

  1. Ben White

    Professor of Law and Director, Health Law Research Centre at Queensland University of Technology

    Thank you for another engaging piece, Peter.

    There are two short comments I wanted to make – neither of which is commenting on the specific case or people involved. The first is that there is a need for clinicians to have an understanding of the relevant legal frameworks that support these decisions at the end of life. Legal confusion and concern can impede good patient care. Of course, the law that governs these decisions should also be coherent and understandable (which is not presently the…

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  2. Bob Thomas

    Retired

    There are a number of impediments to a more compassionate and appropriate framework for end of life issues. One, as mentioned here, is the religious influence over end of life philosophies. Religion should be a concept limited to those who have a religious belief, rather than one which seeks to influence every member of society.

    Politicians, a traditionally conservative group when confronted with such complex problems, are unduly influenced by religious pressure. Politicians are elected to represent…

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    1. Rodney Syme

      Urologist

      In reply to Bob Thomas

      Given the value placed on autonomy in modern society, both in personal, community, ethical and legals terms, the concept of inviolability of human life surely means that a person's life may not be violated by others, but that person may themselves choose to 'violate' their life. By this I mean either refuse life-sustaining treatment, request withdrawal of such treatment, or end their own life, with the proviso that they are fully informed and competent at that time, or at an earlier time when an advance healthcare directive was signed.
      We should also remember that doctors may claim to know a person's best medical interests, but only that person knows their own best interests. Similarly others may claim to be able to measure quality of life, but the reality is that this is a decision for the person who owns that life and is experiencing that life.

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  3. Chris Stackpoole

    Legal Research Assistant

    Peter, thank you for this insightful article.

    It is unfortunate, as in the case of JS, the inaccessibility or lack of clarity of information appertaining to the withdrawal or withholding of life sustaining treatment regularly necessitates applications for declarations of lawfulness. However, as amply explained by Professor White, the legal position on the withdrawal of life sustaining treatment in the context of capacitous patients is relatively certain.

    However, one must be careful in extolling…

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  4. John Clark

    Manager

    Peter, - Unanimity will never be attained, nor should it be sought. The majority view should be a sufficient, as with most issues. People like JS are trapped within the medical system from which they cannot escape, as they are unable to exercise their free will. The paradox is that a person cannot make a binding decision on his/her choice while still capable, but on becoming incapable becomes hostage to others who refuse to allow them to give effect to their wishes. They are not seeking medical treatment, but rather access to the means.

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