“I can only remember one patient who had terminal COPD who killed himself and it came as a complete shock to our team and myself. I know I did not appreciate his existential distress as his physical symptoms seem to have been well controlled.”

IN the summer of 1971, after I finished university in the eastern US and before I started medical school in the UK, I took a road trip with a friend in his family’s Camaro convertible. On our way across the US from New York to San Francisco, we stayed for a week with friends in Jackson Hole, Wyoming. One evening, with the top down and under the Milky Way, we all went to see the movie Catch-22 (based on the novel by Joseph Heller).

Strangely, it was that trip to the drive-in cinema that came to mind when I read the above-quoted observation that followed on from the commentary written by Douglas Bridge in MJA InSight on 20 March 2017.

One of the primary goals of palliative care and, increasingly, health care generally has been to encourage everyone to understand the limits of modern technology to prolong our lives with quality, and to accept the normality and inevitability of eventual death.

  • We ask people to accept that they and every member of their family will die.
  • We tell them truthfully that there are many things that we can do to reduce the physical suffering that they may experience as they approach the end of their life.
  • We acknowledge that we cannot guarantee to relieve all symptoms.
  • We provide support to deal with the complex mix of emotional, social, psychological and spiritual concerns that many of us face.
  • We reassure patients that we will do our best to look after them and their family whatever happens, and to help them all feel safe.
  • And we endeavour to help them set to one side any fears that they may have of being dead.

However, we do not try to stop people from experiencing normal grief. Millions of years of biological and cultural evolution have taught us how to grieve. The price of the bonds that are essential for the success of families and communities is that we must experience loss and undertake the tasks of mourning when they are broken.

By dint of our knowledge, skills, attention to detail and the projection of our personality, we can become quite good at it all. Some of our patients, having achieved an accommodation with the natural end to their life and being at peace, are able to die serenely with their symptoms controlled, in a comfortable environment and in the company of the people they love.

It is not surprising that we may find ourselves feeling confronted by patients who, having embraced our guidance and normalised their death and dying, start to make choices that many of us find unacceptable. This is why I was reminded of that warm summer evening watching Catch-22.

Poor Yossarian. Heller’s character was a US airman based in Italy in World War II. He was driven to a state of paranoia by the realisation that people were trying to kill him because he was trying to bomb them. The military response was that he could not be sent home because the mere fact of applying for discharge on the grounds of insanity was clearly a sane response to people trying to kill him – catch-22.

As we progressively become more successful in our efforts to support people to set aside culturally-driven fears of being dead, we are likely to find that we are creating a conundrum for ourselves, our patients and their families not dissimilar to that faced by Yossarian.

With or without our help, a number of our patients have no fear of being dead. Being at peace and content with the quantity and quality of their life, some decide that they do not wish for more time. A small proportion of those patients who accept the reality of their impending death (perhaps even while sad and grieving), and for whom life-expectancy is short, may wish to exercise what they believe to be their right to choose their time to die. Empowered by the ethos of patient-centred care and encouraged to exercise their autonomy, they announce that they are ready for the end of their life and wish to die now.

At present, the most common response of the culture of health care is the presumption that, because they want to die, such patients must be suffering from depression (if not obvious, then probably cryptic), or some form of existential distress.

Patients are likely to be surprised and disappointed when, having encouraged them to achieve peace with their impending death, we then say they cannot do what is to them a logical consequence of their having realised the goal we have set for them. Especially so if we also subject them to a contemporary version of Catch-22 based on the circular argument that the fact that they make the choice to end their life is sufficient evidence they do not have the capacity to do so. Joseph Heller (1923–1999) may well have been bemused.

There is no argument against the identification and appropriate management of depression or existential distress. However, when we block the requests of patients who have capacity to make their own decisions, they could accuse us of paternalism or maternalism, or even illogicality.

We cannot control the beliefs and values of our patients in a multicultural and increasingly secular society. It seems to me that one of the consequences of our success in promoting acceptance of the normality of death is that we must consider how to respond to contented and dying patients who wish medical assistance in dying, without presuming that their requests or actions mean that they must be experiencing existential distress. An alternative construct could be that our provision of high quality palliative care has helped our patients to achieve existential peace, and that it is in this context that they wish to nominate the time of their death.

Associate Professor Will Cairns is a palliative medicine specialist based at the Townsville Hospital and author of the eBook Death Rules – how death shapes life on earth, and what it means for us.

 

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4 thoughts on “Catch-22: patient choices at the end of life

  1. Dr Robert marr says:

    All terminally ill people should have the right to chose medically assisted dying as long as appropriate safeguards are in place.
    Over 20 years experience in many overseas states where medically assisted dying is legal has shown that there is no abuse of the system.After 20years of legalised medically assisted dying there is no “slippery slope” because in the US state of Oregan medically assisted dying is only used by 1% of terminally ill and in the Netherlands 4% even though it has overwhelming support of the population..
    I believe the legalisation of medically assisted dying is a form of insurance for all of us that when we are terminally ill we can have the right to chose medically assisted dying if our suffering becomes too great for us.

  2. David Cilento says:

    Certainly the sanest, most succinct description of this puzzling & polarizing problem I’ve read !…… Catch 22 is a time-consuming read, but Prof Cairns’s piece gives the essence that should encourage thought in all those of us concerned with end of life…even our own !
    Case by case assessment without bias, but with kindness as the essential.

  3. Anonymous says:

    We continue to ignore patients’ wishes in end-of-life care for the elderly and demented. When you brain leaves you unable to express yourself for lack of words, but still able to think; when you cannot read, or follow what is happening on the television; when you are kept in a secure environment with others who are variably but generally also unable to communicate; when you are silently, desperately waiting for your body to also finally fail; is it any wonder that you would suffer existential distress? Despite their dementia, they can still clearly enunciate their anguished desire for the end to come. Some call out for help repeatedly. Most are medicated, both to be kept physically healthy (and thereby to prolong an unendurable existence) and to keep them calm (sometimes to the point of pharmaceutical restraint). They are kept in a secure facility (locked up). Loyal friends and family visit with decreasing frequency as gradual deterioration becomes increasingly difficult for them to witness. Such a terminal illness is most distressing for all concerned and assisted dying would be a welcome blessed relief. We can and do completely ignore such suffering because they can be kept silent, and out of sight, out of mind. That does not excuse our complicity in the inhumane ignorance and dismissiveness of this terminal suffering.

  4. Dr Greg Mewett says:

    Thanks Will for putting a different viewpoint on this issue. I have been a palliative care physician for over 10 years and before that a GP “with special interest” in pall care for 15 years. Both sides of the VE/PAD debate have annoyed me intensely at times by taking strident, emotional and religious-based stances with little attention to rational ethical discussion. The self-serving fear-mongering from both proponents and opponents does little to help intelligent and constructive discussion about a complex set of issues.
    We should all respect each others’ right to firmly held opinions and understand that there are different ethical standpoints in many areas of bioethics.
    However, it is inevitable that the law will eventually change, perhaps quite soon in my state of Victoria. It is a social issue and “the doctor doesn’t always know what’s best” for people! Our concern, as palliative care professionals, will be how we respond to the change of legislation. I will be quite comfortable with referring that minority of patients who endure with their request for assisted dying (despite my/our team’s very best efforts to relieve their suffering) to someone who has the requisite skills, interest and genuine desire to help these patients, who, I believe deserve a legal option currently not available to them.
    I am also clear in myself (at least at this time) that I do not intend to be the agent of such assisted death. We need, as pall care doctors, to be transparent about what we do, and don’t do, as part of our job description and people should come to us for assistance without being doubtful of our intentions. I will not “abandon” these patients but would attempt to work with them to the very end, to assist with symptom management and other support if they wished me to remain involved.
    Palliative care and medical assistance in dying are not, and should never be, mutually exclusive.

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