Charlotte Paul
When I started thinking hard about euthanasia, I visited my friend who has a progressive illness affecting his body and mind, and who is in hospital-level care. His partner has moved into the same residence to help look after him. She responds to his suffering with love, and you can sometimes see in his eyes that he recognises this. I honour them both: his endurance and gratitude; her generosity.
But, with euthanasia in mind, I think about them both in a different way. Is his suffering unbearable? Although he wouldn’t be competent to make a request for euthanasia, should it become legal in New Zealand, their situation calls into question the value of his endurance and her generosity.
In what follows I explore my intuition that actively ending suffering by causing death undercuts the meaning of suffering.
Talking about the ‘value’ of suffering annoys many people. Of course, the first response to suffering must be to try to relieve it. But if it can’t be entirely relieved we have to draw on moral traditions and psychological resources to help us live with it. Even so, outside religious traditions, it’s hard to find a common language to talk about the moral life. Above, I used the language of virtues: endurance, generosity, gratitude, love. Māori, more than Pākehā, articulate a moral tradition of respect for life and for communal values, and see David Seymour’s End of Life Choice Bill on assisted dying (currently under consideration in New Zealand) as a threat to those values.
Those with a progressive chronic illness, those with disability from birth or injury, a bereaved mother or father, a soldier back from war, all need ideas to help bear their pain. And if someone close to us is suffering, we need these resources too. For some people, the experience eventually becomes enlarging. My fear is that if euthanasia is legalised the idea that meaning is found through suffering will no longer be available: it will drain away.
If euthanasia is used very rarely and for extreme and desperate situations, it need not necessarily undermine this idea. But legalising euthanasia means crossing a bright line. Once it is legal to end the life of a person on their request, it is logical to continue to widen the circumstances in which it is legal. This has happened in the Netherlands and Belgium where, since it was legalised, rates of euthanasia have increased dramatically. Commentators argue that once euthanasia is regarded as a “human right”‘ and a “normal death”, it logically becomes a benefit that cannot be restricted without special justification.
Unsettling conclusions have recently been drawn from Belgium’s experience. In that country, where euthanasia is available to the competent terminally ill and to people with physical and mental suffering who are not terminally ill, its use has extended beyond these bounds. In Euthanasia and Assisted Suicide: Lessons from Belgium, some palliative care physicians who were originally supporters of legalisation describe the progressive medicalisation of the end of life. They write that euthanasia has become a continuation of futile medical interventions:
When ‘nothing more can be done’, we can – impatient with death – still perform the last and final act, euthanasia as the cure for a dying process that is too slow.”
In 2013 they had written with concern about increasing “instrumentalisation”, noting that family members tend to consider the dying process as “undignified, useless, and meaningless” and that requests by family members for active interventions for elderly parents are often “very coercive”.
There have been worries about meaninglessness in illness and dying before. With the rise of effective therapies for many conditions, doctors became less interested in the people whose illnesses they could not cure. In 1949, American physician Leo Alexander wrote:
In an increasingly utilitarian society these patients are being looked down upon with increasing definiteness as unwanted ballast. A certain amount of rather open contempt for the people who cannot be rehabilitated with present knowledge has developed. This is probably due to a good deal of unconscious hostility, because these people for whom there seem to be no effective remedies, have become a threat to newly acquired delusions of omnipotence.”
I remember that almost-hostility as a junior doctor in early 1970s East London. It was shown in neglect for patients for whom we could do nothing ‘medical’, who were very ill, or dying, in hospital. I remember a man with a late stage neurodegenerative disorder in our open Nightingale ward. Other patients took him up to the roof to feel the air; the doctors ignored all but his basic bodily needs. Finally, we found a way to communicate with him, and he expressed his despair. I phoned St Joseph’s hospice, and the nurse explained that they would find a place for him by the window so he could see life going on outside. That was their first response to depression: I knew they would care for him.
Cicely Saunders founded the modern hospice movement in response to the barrenness of medical care for dying patients. Dr Saunders wrote repeatedly about the dying patient’s search for meaning, for something in which to trust. I visited her at the newly opened St Christopher’s Hospice. Her philosophy was that doctors and nurses cared for patients not only in their professional capacity, but in “our common vulnerable humanity”. “Professionals’ own search for meaning,” she wrote, “can create a climate … in which patients and families can reach out in trust towards what they see as true and find courage and acceptance of what is happening for them.”
These days, the encouragement for doctors to be omnipotent and instrumental is coming from the public, as shown by the majority of those who support legalising euthanasia. But the supporters have moral reasons: they want the right to choose the manner of their death, and express compassion for those suffering unbearably. They don’t see their support as encouraging doctors to be omnipotent, or society to become more instrumental in its attitude to care. They have seen the suffering of friends and family and don’t want that for themselves or those close to them. They know death is not the worst thing. Nor do they see these wider concerns as relevant; they believe legislative safeguards will be put in place to prevent them.
Yet there are difficulties. First, a law change that responds to a request for compassion for some individuals might have wider consequences that are worse for everyone. Second, a right to choose to die presumes an obligation on doctors to end a life; an obligation at odds with the traditional morality of medicine. My concerns are that legalisation will make the meanings in suffering and death unavailable and tempt doctors into omnipotence again.
Palliative care physician Paul Vanden Berghe and colleagues in Belgium go further and suggest that “unbearable suffering” itself might be intensified by legalisation that has led to “unbridled euthanasia”. They say:
The question remains: ‘Which is prior: unbearable suffering for which euthanasia is the ultimate solution? Or does the suffering become unbearable because, henceforth, there is such a way-out as euthanasia?’ Could it be that, in the long term, unbridled euthanasia thus enhances the suffering it pretends to relieve? It would then overshadow the profoundly beneficent effects of the laws of 2002, on patients’ rights, palliative care and also euthanasia.”
Here they warn that not only are people becoming less able to bear suffering because of the wide availability of euthanasia, but that the wide availability of euthanasia actually makes suffering worse.
Though the vast majority of doctors in New Zealand do not want to actively end the lives of their patients, there are doctors who, if the law is changed, will do so. There is evidence that it already happens occasionally. This is one argument for changing the law. Yet evidence from Belgium shows that making euthanasia lawful and subject to reporting does not necessarily provide controls over medical behaviour: around half of euthanasia deaths still go unreported.
People with disabilities who have thought carefully about these issues understand that legalisation has the potential to harden collective understandings of disabled lives as undesirable or even unliveable. In jurisdictions where it is legal, people commonly request euthanasia out of fear of disability. If health workers connive in that fear, they will be complicit in the loss of meaning, less available to their disabled patients, and less likely to fight to enlarge their patients’ social and economic lives. This is another facet of omnipotence.
The clearest response to the End of Life Choice Bill is to reject it on the grounds of the common good. In the absence of strong cultural and religious traditions, the law itself carries great moral weight. Keeping the legal bright line which forbids intentional killing – except in the case of self defence – will make it easier for medicine and nursing to uphold the Hippocratic prohibition against taking life.
Charlotte Paul is emeritus professor in preventive and social medicine, University of Otago, New Zealand.
Sources:
- Kerr-Bell, R. Tiheiwa Mauri Ora! A Māori perspective of the end of life debate
- Jones, DA, Gastmans, C MacKellar, C, eds. Euthanasia and assisted suicide: Lessons from Belgium. Cambridge: Cambridge University Press, 2017
- Alexander, L. Medical science under dictatorship. NEJM 1949;241:39-47.
- Saunders, C. A personal therapeutic journey. BMJ 1996;313:1599-1601
- Centre for Feminist Research at York University, Canada. Designing crip futures.
My late friend killed herself by stopping to eat and drink. She wanted to kill herself because she felt her quality of life after 5 years of no hand function due to MS wasn’t bearable anymore. She also struggled with getting carers that cared and the pressure it put on her family. I think we need excellent palliative care facilities but we also need to accept that for some people assisted dying is the way. If you have hand function and are of sound enough mind you can do it without assistance! I have been a midwife and supported a lot of women through natural childbirth but women also have a right to an epidural. Birth and death are so similar. Choice and support need to go hand in hand.
Thank you for that thoughtful survey of the arguments both ways, Charlotte.
Charlotte, you have written so very well about the difficulties of euthanasia. It is something that at first glance looks desirable but the longer I look at it the less I like it. Speaking as a doctor, I am puzzled why euthanasia is thought to automatically fall under the domain of medicine. The assessment of competency could be done under a legal framework, by lawyers, as could the provision of the means. But that is never considered. It is always assumed to be a medical issue. But is it really? Personally, I think the legalisation of euthanasia can place doctors in an invidious and soul destroying situation. These effects are rarely considered in the debate.
This piece is thoughtful and considered. Thank you for diving deeply into territories of thought that many of us avoid or struggle or to articulate. It seems to me that as we employ ever-more-succinct sound bytes to say what it all means, the in-common humanity of all perspectives flies out the window and there is too much snarling at one another.
We should stay clear of making euthanasia a medical question. Doctors should not be placed in a position where they have to undermine their own moral to administer life-ending drugs. Instead, we should be looking at the question form the perspective of the patient and patient options. Speaking as a cancer patient that has suffered debilitating pain due to spinal tumours, there is no value in suffering physical agony, absolutely none. Suggesting that there is, is simply offensive. Trying to draw some higher moral value from suffering is an indulgence affordable to only those that are not the victims. It’s a perspective that minimises agony & victimises those that suffer even more, because of the added expectation that they should somehow grow through the experience or find some moral insight. There comes a point where you would happily bludgeon yourself to death, just to make the pain stop & no pontification on the subject of suffering can change the basic fact that there comes a point where there is no God, no morality, no thought, no love, no hope, just pain. So in the end, we have to ask ourselves if we as a society are willing to give people with real agony and no hope for relief a dignified way out, or if we’d prefer the families to be left with the mess of the alternative. Once we’ve answered that question, we can figure out the rest.
I really appreciated reading Charlotte Paul’s article as it gave a somewhat different perspective on the euthanasia issue. I found the Belgian experience particularly interesting. My concern about legislating a right to assisted suicide has always been the potential down-the-road consequences to the social and moral cultural psyche of our communities. I would like to speak some of my own thoughts into the mix.
My family members are all very much in favour of legislating a right to assisted suicide, and I do understand their desire for control of their lives and deaths in various hypothetical future cases. I trust them, they trust me, we all have respect for each other and ‘good intentions’, and believe we will always support each other in every way that we can. This family dynamic may be common, but I haven’t seen it to be universal.
I think it is naive to expect that when you change a cultural norm so radically, it won’t lead to a devaluing of others’ lives when they become inconvenient. Or these days, with economic rationality so invasive in ethical discussions and decisions, to assume that the evolving norms won’t push people toward suicide (assisted or otherwise) when their care is no longer considered cost effective or when it is deemed too demanding of resources to support people who are dying at an inconveniently slow pace.
It isn’t that I would condemn an individual for making the choice to end their life when it is intolerable to them. Over the past 40 years I have known or known of a number of people who have chosen to end their lives at a point when their suffering with a terminal illness became unbearable to them. They were not in New Zealand and not in countries were assisted suicide was legal. They were assisted in gaining the means to end their lives by people who loved and respected them, and they all acted with dignity, respect and courage. I have also been close to 2 people whose experiences of dying were prolonged and sometimes very difficult or agonising, yet those people were supported by a loving community, and in some ways the experiences they shared were profoundly important and valued by many of those involved.
I agree with the responders to the article who argue against the idea that assisted suicide is a medical issue, something to be laid in the hands of doctors. Certainly it is a legal, social, spiritual and cultural issue. It seems somehow almost a pretense to medicalise the choice, perhaps an attempt to make it all easier psychologically for those involved. It should be hard to make that choice. Death is profound; it is not only the end of suffering. The people I know of who assisted others to die did so with a realisation of the risk; they chose to put themselves at risk to help someone they loved and respected. I wonder if perhaps the legalising and institutionalising of ‘helping ‘ people to die makes the choices potentially increasingly depersonalised and trivial.
An incident reported in the medical incident review literature in the Netherlands has stuck in my mind. I don’t have a reference for this article, only my memory of it. A woman diagnosed with Alzheimers disease had expressed a wish to die when she reached a particular stage of mental disability. She made this choice when she was still very much in control of her mind and life, active in the wider world, and she formally set out the plan with her family and the doctor in the care home where she went to live out her life. After some time, she seemed to her caregivers to have reached that stage. She herself, for several days, started saying to anyone who would listen ‘I don’t want to die’. The doctors, family and caregivers disregarded this and attempted to administer the drugs that would kill her. She fought back. Eventually they sedated her and administered the drugs to ‘end her life’ (a better sounding description). The panel that reviews questionable cases considered that the medical staff acted appropriately because ‘when she was competent’ she had requested that outcome.
What is ‘competence’? As she as a human being changed through the course of her illness, who had the right to say that she couldn’t make a different choice? These sorts of issues concern me. Though I know that if my husband were, for instance, to experience Locked In Syndrome he would want the life support turned off instantly, I wouldn’t. I told him: perhaps find a way for me to communicate and maybe there is a lot of music I would like to listen to; letters and poems I might want to write; people I might want to see; and I really ought to publish my thesis as a book if I haven’t already. I expect that after a time I will have had enough and I’ll let you know. And I told him that if I am so damaged that I cannot ever again communicate or act in the world, even if I am catastrophically irrevocably brain wrecked, I really would like a few days to exist and adjust before he switches off the life support. Perhaps my family and community would like that too. ‘I’ am more than just my brain, and more than an atomistic being alone in the world. When someone with whom our lives are intertwined dies, there is loss, grief, suffering all around… Getting it over faster doesn’t necessarily make it easier.
This is a clarification to my previous response. On re-reading the section I realised I was unclear.
This is the section:
‘Though I know that if my husband were, for instance, to experience Locked In Syndrome he would want the life support turned off instantly, I wouldn’t.’ [[ I meant that I wouldn’t if in the same circumstance want my life support turned off instantly.]] If my husband were in such a situation, I would do everything I could to find out his present wishes and state of mind. But knowing his stated intent and feelings for many years, and in the absence of evidence of any contrary wish, I would do everything I possibly could to help him end his life.
-The section continued and is perhaps it is clearer now: ‘I told him: perhaps find a way for me to communicate and maybe there is a lot of music I would like to listen to; letters and poems I might want to write; people I might want to see; and I really ought to publish my thesis as a book if I haven’t already. I expect that after a time I will have had enough and I’ll let you know.’
Dear Charlotte,
, I apologise to be late to comment but I wanted time to think about your premise. The loose and broad indications have been a feature of this and previous Bills introduced to Parliament to a level of concern that, from a paerson, with a forceful personality and a strong conviction, it could lead toward the provision of ‘death on demand’.
What I find more problematic is that the emphasis in the wider debate has shifted from living to suffering. I agree that suffering has been highlighted as an indication for mercy killing but at the same time, it appears to me that there is not a balance of the things that can and should be done to maintain personal, family, friendship and social links in both declining health and terminal care. Such extra care will require more investment, whether it be in family time or outside help, The benefits are likely to be very personal and hard to quantify.
The alternative is that care could also be limited to add to the suffering that is being used to indicate the need for killing. dp
Thank you to all those who responded to my piece. They show I didn’t develop some of my arguments and that I left a lot out. In response to the comments:
1. Suzanne Noel-Bentley extends my concern about loss of meaning when she says: “I think it is naive to expect that when you change a cultural norm so radically, it won’t lead to a devaluing of others’ lives when they become inconvenient.” She gives the example of a situation in 2016 in the Netherlands where a doctor overrode the wishes of a demented patient, who had earlier made a request for euthanasia. The doctor put a sedative in the patient’s drink and then asked the family to hold her down to administer the fatal dose. More detail can be found here: https://wtop.com/national/2018/04/dutch-probe-appalling-euthanasia-of-dementia-patient/
2. There must be rare situations, when someone is suffering, where to accede to a request to end their life is the compassionate response. As Ryno Steyn says, there are times of real agony and no hope of relief at the end of life. How could the law be changed to accommodate only these rare situations? One option is to keep intentional killing illegal, but to make a lesser charge of compassionate killing for those who have assisted death for compassionate reasons – as ethicist Richard Huxtable has proposed. The alternative is to expect doctors occasionally to break the law, and possibly to give them guidelines to follow.
3. Some doctors, knowing that euthanasia holds dangers for the practice of medicine, suggest that it could be made legal outside medicine. Katherine Hall suggests that the assessment of competency and provision of the means could be done by lawyers. My main argument against this proposal is that it would provide no protection against normalisation.
4. Of course, there are ways now that we can support each other to live meaningful lives and to enlarge the social and economic circumstances of people with disabilities. Dennis Pezaro observes the importance of maintaining personal, family, friendship and social links in both declining health and in terminal care. The cost of not doing so, he observes, is further suffering.
Hi Charlotte,
Legislating euthanasia does hold the risk of normalising the killing of another person. Another issue with this approach is that inevitably, wording of such a bill will be ambiguous, open to interpretation and lead to unintended consequences as is often the case with legislation.
Addressing Suzanne Noel-Bentley’s point, any approach we take should not be changing our cultural norms, but be a reflection of them. In reality, compassionate killings are already happening. Most are the final reflections of caring relationships and should remain so in whatever approach we choose.
In the Dutch examples, there was a lack of explicit consent in some case, which should always be required. In the other cases, we already have a precedent.
If a patient has given specific instructions, a deteriorating situation leading to their inability to make informed decisions, should not change their treatment. We already already do this with DNRs which are enacted when patients are no longer in a position to express any possible change in their wishes. This is why any person opting for this should do so well informed.
In my opinion, a good approach would be to leave the act criminal but allow judges flexibility in sentencing and/or to define a lesser category for the crime for compassionate killings. The onus then lies on the defendant to show that the “victim” requested the assistance with ending their lives and a robust prescription of how this can be done could be created by precedent.
This approach would have multiple benefits. It would not normalise killing, while permitting the flexibility for compassion by consenting individuals only. Non-consenting medical practitioners would not be forced to participate, which could happen if euthanasia was legislated. Each case would also be open to judicial inquiry & oversight within our existing legal system.
Since criminals cannot benefit from their crimes, one issue with this approach is that a criminal conviction could result in life insurance companies refusing benefits to family, but this can be addressed by specific inclusions in these policies.
This approach obviously only works where the “victim” is of sound mind and able to give explicit consent, but since this will likely cover the majority of those requesting euthanasia, that may be a good place to start. For medical practitioners, this means that their participation and the extent of such participation is completely open to the individual, ranging from administering life-ending drugs or providing them, to no involvement at all. Having worked so hard an long to keep me alive, the last thing I’d want is to force my doctor to end my life against his/her will. Compassion runs both ways.