Assisted Dying Laws: Is suffering still the main problem?

November 23, 2017

Megan Best

We all shrink from the thought of protracted end-of-life suffering. In the past, it is this fear that has given impetus to campaigns to legalise euthanasia. But is this still what’s driving it? Dr Megan Best explains how recent debate about assisted dying laws has changed, and what’s at stake.

 

The push for legalisation of assisted dying seems to be stronger than ever. Over 40 bills have now been debated in Australian parliaments regarding whether euthanasia should be legalised. It is regularly in the news, and we hear story after story of suffering in the final days of life. Sad stories, like the woman with Motor Neurone Disease who has lost her ability to speak or use her hands. We hear the unspoken message—this could be you, and you are right to be fearful.

Euthanasia describes an act where a doctor intentionally ends the life of a person by the administration of drugs, at that person’s voluntary and competent request. Physician assisted suicide describes the situation where a doctor intentionally helps a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request.[1] The doctor is thus distanced from the act, but morally it is no different to euthanasia as the motivation, intention and outcome are the same—therefore in this essay, the terms are used interchangeably.

Current assisted dying bills in Australia suggest both acts should be legal, with doctors allowed to administer lethal substances when the patient is unable to do so themselves. These situations are not to be confused with stopping life-prolonging treatment, where it is the underlying disease that leads to death, rather than flicking the switch. They also should not be confused with responsible use of sedatives or strong analgesics at the end of life to control distressing symptoms, as these drugs do not hasten death when used in therapeutic doses. They may, in fact, prolong life.[2] We are discussing here a groundswell of public opinion that we need a change in the law to allow a doctor to kill a patient or facilitate suicide; nothing more, nothing less.

But euthanasia has been a prohibited medical practice for over 2,000 years. We have more medical treatments available than ever before in human history. Why are we having this debate now? The standard rhetoric addresses the need for compassion for those suffering, and the need to uphold personal autonomy and dignity. Let’s consider these arguments.

We have always heard arguments about suffering at the end of life as part of the euthanasia push. Those lobbying most strongly for euthanasia laws have often had a personal experience of watching a loved one die badly, for example Marshall Peron, Chief Minister in the Northern Territory debate in the 1990s. Interestingly, the brief legislation of euthanasia in NT led to a federal increase in palliative care funding that reduced calls for relief of suffering, as the benefits of palliative care started to be realized across the country. Yes, there is still suffering at the end of life for some people. This is a terrible state of affairs. By now, we all know that palliative care provides multidisciplinary support for those at the end of life, but we may not be aware that most deaths are peaceful. Very few people should be in pain at the end of life, but sadly more than necessary are in this situation because palliative care funding is insufficient for our needs. Not all doctors are trained in palliative care. This situation is at risk of getting worse with aging of the population and increased demand on services. Commentators have noted that, even if assisted dying is legalised, it will not ease most suffering at the end of life. It is a distraction from the need to improve healthcare for the dying.[3] More access to palliative care is needed, as pointed out in the recent NSW Attorney General’s report on palliative care provision.[4]

But then suddenly, in the last year, the debate changed. The community debate has been startling in the vitriol of attacks on palliative care services. Proponents of euthanasia laws have attempted to downplay, obfuscate and corrupt the intentions and effectiveness of palliative care. The aim of the strategy seems to be to create fear in listeners that medical and palliative care professionals cannot help people with terminal illness, that they increase or prolong people’s suffering or, conversely, that palliative care hastens patients’ deaths in a covert way.[5] Claims have even been made that some (Catholic) palliative care services deliberately withhold analgesia in the belief that suffering is somehow good for us.[6] Such arguments are insulting to a highly professional branch of medicine.

It is not only the suffering of the terminally ill but the suffering of those obliged to care for them that is under consideration. Research has found an association between concerns about the physical and economic costs of caring for dying relatives and support for euthanasia.[7] These sentiments may not be malicious in nature, but reflect physical and emotional exhaustion. More sinister is the rise of elder abuse, with a recent investigation by the Australian Law Reform Commission finding that the most common form of abuse is financial, and that perpetrators are likely to be related to the victim.[8] Mixed motives for family support of euthanasia was the topic of the winning short film in this year’s Tropfest festival, ‘The Mother Situation’.[9]

It is easier to understand the current arguments when you realise that the debate is not really about physical suffering at all. If it were, the euthanasia debate would not be limited to the Western world. Proponents of euthanasia would not call for withdrawal of funding from Catholic hospitals, major providers of palliative care, because they say they will refuse to participate in any law that is passed.[10] If we are all honest, we can admit that it is about autonomy. The last bastion of liberal human rights is to be able to choose the timing and manner of one’s own death. That is what is being sought.

Individualism in Western countries is strong and getting stronger, so the good of the wider society is trumped by what I think is best for me. We value our independence and expect to be in control of our lives. We live in a world of comfort and expect immediate gratification. We know what we want and expect the government to protect our rights. Of course, our last autonomous act should be choosing how we die. We are told that up to 85% of the community would like the option of legal euthanasia at the end of life.[11]

Yet when we look at how many people request euthanasia at the end of life, we find the picture is quite different. Research in Sydney found that only 2.5% of patients asked about euthanasia on presenting to a palliative care clinic, and that number fell to less than 1% once care had commenced.[12] In my experience, most people at the end of life want more time, not less.

Desiring death

In order to understand the phenomenon more clearly, we can look at the reasons for euthanasia requests in jurisdictions where it is legal. In those places, it is not because of physical problems. The academic research shows that the problems leading to calls for hastened death are psychological, social and spiritual: fear of being a burden; fear of loss of control, loss of autonomy; fear of anticipated suffering rather than suffering itself; fear of being left alone.[13] Typically, these are the reasons people think they would be better off dead. These are the problems prompting the euthanasia debate.

I have seen many tragedies in my time working in palliative care. One of the saddest situations I see is when someone learns they are going to die soon, and no-one cares. This happened once to a man who sat in my clinic room with his ex-wife and hostile daughter. He had burned his bridges. Later, he said to me, ‘I can understand why people talk about euthanasia’.

Research has shown that many euthanasia requests are misinterpreted by healthcare professionals who hear a request for hastened death when it is really a call for help. Our society is not good with death, we are youth-obsessed and death-denying. We have lost our traditions and no-one knows how to die anymore. Our relatives go to a hospital to die and most members of the public have never seen a corpse. When we come to face our own death, it’s scary. We are unprepared.

But does this experience make someone think they would be better off dead? What is it that happens in people with a terminal illness that makes them want to hasten death?

A sudden health crisis at any time of life, but particularly a life-threatening diagnosis, is known to precipitate an existential crisis with the raising of the big questions. Why me? What am I doing here? What happens when I die? We call this the ‘existential slap’. Western society is struggling to answer these questions.

Some people, for example those of strong faith, may face these questions and find the answers. Life may become more precious because of reordering of priorities at such a time. They become stronger and experience a time of personal growth. We call this process ’transcendence’.

But many people struggle with the big questions. Many people have long ignored the spiritual, or existential, aspect of life by the time they get to this point. Those who have a lower level of spiritual wellbeing may find it difficult. Instead of growth, the existential slap may lead to existential suffering—suffering of the whole person, in all its dimensions. Not just physical, but psychological, social, spiritual, cultural and historical factors may play a part. The physical can be dealt with, and the suffering may still remain.[14]

Such suffering is a terrible experience. One feels disconnected from others, in a world without hope while helpless to change it. The sufferer feels alienated from those around her, as if on the ocean in a rowboat without any oars. It can be difficult to articulate the suffering, or one may be unwilling even to try for fear of creating suffering in others.

This kind of suffering can only be resolved when the individuals themselves find a solution—understanding the meaning of their experience, so they can incorporate it into their life story. We doctors can provide a safe space in which to seek meaning, but we can't do the work. Dying well can require significant effort. Not everyone wants to do it. Not everyone feels they have the resources.

Some forms of therapy have been developed which can facilitate the work of meaning-making. New York psychiatrist, Dr William Breitbart, recommends the expansion of palliative care beyond symptom control to include the existential and spiritual domains of the person, in order to help an individual come to an acceptance of death. He has developed a form of psychotherapy that allows the individual to find sources of meaning in their lived experience, thereby enhancing spiritual wellbeing and improving quality of life, even in the presence of significant physical symptoms.[15] This therapy is not widely available in Australia.

One of the reasons palliative care is important at the end of life is because palliative care staff are trained to address the spiritual needs of the patient, perhaps helping alleviate the spiritual pain that can develop. Of course, care of the physical is important, but it is care of the spiritual that can make the difference in whether a peaceful death ensues. Palliative Care Australia has highlighted many segments of the community for whom palliative care provision remains inadequate. It is interesting that those with the support of a faith community are less likely to support legalised euthanasia.[16]

In one sense, it is understandable that a person with a materialistic view of the world, going through tough times, may want to just end it all. But the debate we are having is not about whether an individual can ever be justified in their wish for euthanasia. The debate is whether we should change the law so that one group of persons (doctors) can assist in the death of another group of persons (patients) without penalty. And it is when we see the debate on a communal basis that we see the risks.

The strongest secular arguments against legalisation of assisted dying concern the risks of abuse, where the law is applied to those who won’t, or can’t, ask for euthanasia themselves. This has been seen in jurisdictions that have already legalised euthanasia and physician-assisted dying—jurisdictions that have agreed that some lives are not worth living.[17]

What impact would a law allowing such actions have on wider society? In some jurisdictions where assisted dying is available, unassisted suicide rates are increasing.[19] Laws, once introduced and normalised over time, have an educative effect. Such a law will legitimise the choice of suicide as a solution to our problems. Rates of unassisted suicide in the Netherlands are at an all-time high.[20] Is this the message we want to send?

It is naïve to think things would be different in Australia. Once euthanasia is legal, why would we limit who can access such a service? Does it matter why someone decides they want an ‘assisted’ death? We currently allow mentally competent adults to refuse life-sustaining treatment without an explanation. One could suggest that assisted dying is merely an extension of a right to not have one’s life prolonged. We already have the guardianship board to decide questions of treatment for mentally incompetent individuals. This would be much simpler than the cumbersome levels of medical review required by the bill headed for the Victorian parliament.

The question of whether someone has sufficient mental competence to ask for suicide tablets is a further difficulty. For example, one of the symptoms of depression is the wish for hastened death. Should someone be allowed to kill themselves if we thought treating their depression would change their mind? In fact, research has shown the wish for hastened death waxes and wanes in people with serious illness,[21] complicating the consideration of whether such a wish should be granted at any given point in time. In Oregon, if a doctor doesn’t want to give physician-assisted suicide pills because they think you are depressed, you can go to another doctor and try again. And again. Eventually you will get what you want. Autonomy rules.[22]

Australian legislators have suggested that potential recipients of euthanasia be reviewed by doctors and possibly a psychiatrist or psychologist before being allowed to proceed. However, there are problems with this as well. Stories from the brief period when euthanasia was legal in the Northern Territory show that the psychiatric review was seen more as a hurdle to overcome than a safeguard or an opportunity for treatment. Not everyone was completely honest in their responses.[23] Psychiatrists in Australia have expressed concern about their ability to assess the mental competence of a patient after seeing them only once. Of course, doctors regularly make decisions about a patient’s mental competence on a single meeting. But in the cases I can think of where that is required, the decision can be reversed down the track if a mistake is made. Not so, in this case.

One of the fallacies in the current debate is the assumption that assisted dying is equivalent to peaceful dying. In fact, physician-assisted suicide may not be flawless, quick or painless. Every medical procedure can have complications. According to the research, technical problems and complications occur in up to 25% of cases of physician-assisted suicide. These include technical problems such as administering oral medications, patients developing nausea, vomiting (and swallowing vomit) or muscle spasms after taking the tablets, and in one study a proportion of people did not die from taking the tablets, but woke up after a period of being in a coma.[24]

Which leads me to my next point. In an attempt at legitimising the practice, it has been proposed that doctors do the deed. I have never been sure why this is the case—does it feel safer to be killed by someone in a white coat? I was once asked whether doctors sterilise the needle when they perform euthanasia, illustrating beautifully how far removed from current medical practice the act of euthanasia would be.

Euthanasia and assisted killing contravene centuries of medical ethics that have prohibited such practices. In the words of the Hippocratic Oath, ‘Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course’. First, do no harm. It’s worked well for us so far, why would we complicate the medical consultation by obfuscating it with ending life? How much more reluctant will patients be to come to the palliative care clinic if euthanasia is part of the therapeutic repertoire?[25]

If we recognise that the call for hastened death is not about physical suffering but about autonomy, doctors could be left out of it. It could become a regular job for persons who, like the majority of the general public, are in favour of a law allowing assisted killing—someone without a professional code to complicate the issue. Giving a lethal injection is an easy procedure that anyone can learn. We could have state assisted-dying clinics where staff are trained (unlike doctors) to screen applicants and make arrangements for death.

Euthanasia will not improve the care of dying patients. It does not ensure a peaceful, painless death and risks confusing the motives of the medical profession. It seems, then, that we are experiencing a media onslaught aimed at pushing legalisation of euthanasia for a small number of people who are experiencing existential suffering. In view of the fact that to pass such a bill means changing one of the basic tenets of our society—that we do not kill each other, even for reasons of compassion— we need to resist and call the shots for what they are.

Overall, it’s a complex business. As a Christian, I am opposed to the killing of innocent human beings. It’s one of the Ten Commandments (Ex 20). But I have many reservations about changing the law to allow doctors to prescribe suicide pills or give lethal injections that do not depend on Bible verses. In this article I have mentioned some of them. We live in a democracy. We are all entitled to voice our opinions. If our community looks this practice in the face and says, yes, this is what we want—death on demand—so be it.  But it needs to look it in the face directly. Not through the lens of lies about what happens now at the end of life. Not hidden under a cloak of medical legitimacy. Not pretending that this is all that is needed to ease suffering at the end of life. In order to die peacefully, we need to know the meaning of our life. This is not the way.

 

 

[1] Euphemisms abound in this debate—physician-assisted suicide becomes physician-assisted dying, or medical aid in dying, or assisted death—but terms that obscure the truth are unhelpful.

[2] P. Good, P. Ravenscroft and J. Cavenagh, ‘Effects of opioids and sedatives on survival in an Australian inpatient palliative care population’. Internal Medicine Journal 35(9), 2005, pp512-517.

[3] Ezekiel Emanuel, ‘Euthanasia and physician-assisted suicide: focus on the data’. Medical Journal of Australia 206(8), 2017,  pp339-340.

[4] Giselle Wakatama,  ‘NSW palliative care the subject of scathing auditor-general report’. ABC News, 17 August 2017.

[5] https://palliverse.com/2017/09/14/stop-the-horrorible-misrepresentation/

[6] https://youtu.be/fyOZ6QDk88Y; A. Denton, ‘A good ending’. The Saturday Paper Jun 17, 2017.

[7] J. L. Givens. and S. L. Mitchell, ‘Concerns About End-of-Life Care and Support for Euthanasia’. Journal of Pain and Symptom Management 38(2), 2009, pp167-173.

[8] The Australian Law Reform Commission's (ALRC) report on elder abuse: Elder Abuse – A

National Legal Response. http://www.alrc.gov.au/sites/default/files/pdfs/publications/elder_abuse_131_final_re

port_31_may_2017.pdf

[9] http://mobile.abc.net.au/news/2017-02-12/tropfest-matt-day-takes-top-honours-forthe-mother-situation/8263168?pfmredir=sm

[10] ‘Hospitals refuse to kill terminally ill’. http://www.theaustralian.com.au/nationalaffairs/health/hospitals-refuse-to-kill-terminally-ill/news-story/6b80b8a56d86f732f3479329a0eba221

[11] Newspoll 2009. https://dwdq.org.au/wp-content/uploads/2017/08/Polls-on-VE-from-2007-to-2016-Updated.pdf

[12] P. A. Glare (1995). "The euthanasia controversy. Decision-making in extreme cases." Med J Aust 163(10): 558.

[13] P. L. Hudson, L. J. Kristjanson, M. Ashby, B. Kelly, P. Schofield, R. Hudson, S. Aranda, M. O'Connor and A. Street (2006). "Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review." Palliative Medicine 20(7): 693-701.

[14] M. Best, L. Aldridge, P. Butow, I. Olver and F. Webster (2015). "Conceptual Analysis of Suffering in Cancer: a systematic review." Psycho-Oncology 24(9): 977-986.

[15] W. Breitbart, B. Rosenfeld, C. Gibson, H. Pessin, S. Poppito, C. Nelson, A. Tomarken, K. Timm Anne, A. Berg, C. Jacobson, B. Sorger, J. Abbey and M. Olden (2010). "Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial." Psycho-Oncology 19: 21-28.

[16] Givens op. cit.

[17] B. D. Onwuteaka-Philipsen, A. Brinkman-Stoppelenburg, C. Penning, G. J. F. de Jong-Krul, J. J. M. van Delden and A. van der Heide (2012). "Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey." The Lancet 380(9845): 908-915.

[18] https://www.government.nl/topics/euthanasia/euthanasia-assisted-suicide-and-non-resuscitation-on-request. Accessed 8/8/17

[19] D. A. Jones and D. Paton (2015). "How Does Legalization of Physician-Assisted Suicide Affect Rates of Suicide?" Southern Medical Journal 108(10): 599-604.

[20]  Number of suicides reach highest level ever in the Netherlands. Accessed at: http://www.dutchdailynews.com/number-of-suicides-reach-highest-level-ever-in-the-netherlands/10/10/2017

[21] H. M. Chochinov, D. Tataryn, J. J. Clinch and D. Dudgeon (1999). "Will to live in the terminally ill." The Lancet 354(9181): 816-819.

[22] H. Hendin, K. Foley and M. White (1998). "Physician-assisted suicide: Reflections on Oregon's first case." Issues L. & Med. 14: 243.

[23] D. W. Kissane, A. Street and P. Nitschke (1998). "Seven deaths in Darwin: case studies under the Rights of the Terminally III Act, Northern Territory, Australia." The Lancet 352(9134): 1097-1102.

[24] J. H. Groenewoud, A. van der Heide , B. D. Onwuteaka-Philipsen , D. L. Willems , P. J. van der Maas  and G. van der Wal (2000). "Clinical Problems with the Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands." New England Journal of Medicine 342(8): 551-556.

[25] However, there is reason to insist that an independent person be present, in order to make sure that the medication, in the case of assisted suicide, be taken voluntarily.

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