LIVING WITH EUTHANASIA: The ethical imperative of providing alternatives
If, like me, you argued that legalising euthanasia was a very dangerous and unwise idea, you lost the battle to prevent it from being legalised in all the Australian states and now, probably, in the ACT. I am assuming that in this article, hence the title “Living with Euthanasia”.
However, that does not mean that we can give up on trying both to ensure how people choose to die – what Voluntary Assisted Dying (VAD) supporters call “end-of-life choices” – are the most ethical ones and to give people reasons not to choose VAD (Physician-Assisted Suicide (PAS) or euthanasia).
In fact, when VAD is legal, we have more work to do than previously. That work must offer people alternatives to VAD which they will want to choose instead of euthanasia (a word I will now use to include both euthanasia – a doctor administers the lethal substance – and doctor-assisted suicide – the doctor gives the person a prescription for lethal medication, intending them to use it to commit suicide.
To understand what we need to do to achieve that outcome, we must know the nature of the challenges we face because “good facts are essential for good ethics”.
START FROM AGREEMENT
First, we should identify where we agree and disagree and try to start from agreement. That gives us an experience of belonging to the same moral universe and alters the tone of our disagreements.
No one wants to see people suffer and everyone recognises fundamental ethical obligations to relieve suffering. Where we disagree is on what the legitimate and ethical ways of doing that are. The euthanasia debate is not about if we will die – we all will. The disagreement is about how we will die and whether some ways, that is, by euthanasia, are unethical and dangerous.
CORRECT MISTAKEN BELIEFS
It is important to know what is and is not PAS/E (VAD) and correct mistaken beliefs about euthanasia. Respecting a patient’s refusal of life support and providing fully adequate pain management is not VAD, as many members of the public and even some healthcare professionals mistakenly believe. These are long-standing, legally valid and medically and ethically required interventions.
Polls can be skewed towards approving euthanasia because respondents think these interventions are a form of VAD and they want them to be available and endorse euthanasia for that reason. This occurs when the survey question is “Should a person in unbearable pain have access to euthanasia?” and the choice of response is either for the relief of pain and for euthanasia or against both. This confusion would be avoided if there were two questions, “Do you agree with fully adequate pain management?” and “Should VAD be legalised?”.
NORMALIZATION OF VAD
A major danger of VAD is it quickly becomes normalised: the people who can have access and on what bases rapidly expand and we need to work to prevent that happening.
The Logical and Practical “slippery slopes” are unavoidable, as Belgium and Canada demonstrate.
The practical slippery slope occurs because once euthanasia is legalized, it is provided not in accordance with the law: 27 per cent of Belgium doctors surveyed who had provided euthanasia had done so not in accordance with the law. This is probably an underestimate as admitting that meant confessing to a criminal offence.
The logical slippery slope is the expansion of who can have access to euthanasia and on what grounds. Access to Medical Aid in Dying (MAiD) in Canada has expanded dramatically since its legalisation in July 2016. The patient need no longer be terminally ill, and legislation has been enacted to allow, in March 2024, MAiD it for people who have no physical illness, only mental illness. Allowing MAiD for dementia patients by advance directives signed while they are still mentally competent and for mature minors with the capacity to consent are currently being considered. Journalists are reporting heart-breaking cases where the reasons for asking for MAiD are social deprivation, for instance, stories of Canadians with disabilities who have died by euthanasia, because of poverty, homelessness, an inability to obtain medical treatment, in particular, lack of access to good palliative care. We have ethical obligations to care better for people with disabilities both to protect them from coercion/persuasion to accept VAD but also to ensure they do not feel that their present life circumstances are so unbearable that it is their only option. “There is a growing accumulation of narrative accounts detailing people getting MAiD due to suffering associated with a lack of access to medical, disability, and social support” (Ramona Coelho John Maher, K. Sonu Gaind, Trudo Lemmens, The realities of Medical Assistance in Dying in Canada, Published online by Cambridge University Press: 18 July 2023).
In Canada, the official death toll from MAiD to the end of 2021 was 31,664 and that is almost certainly an underestimate. In 2021, 3.3 per cent of all deaths in Canada were by MAiD. Deaths by MAiD increased by 32.4 per cent in 2021 compared with 2020.
After the requirement that “death be reasonably foreseeable” was repealed, 2.2 per cent of MAiD deaths were in this category. In at least 1740 deaths, loneliness and isolation were given as reasons for wanting euthanasia. (See the poem “Loneliness”, Margo Somerville)
Perhaps the most chilling of all these consequences is the founding of a medical society called the Canadian Association of MAiD Assessors and Providers (CAMAP). The members are doctors and nurse practitioners who specialise in euthanasia (MAiD), some of whom provide no other services and have carried out hundreds of cases. They have lobbied for medical students to be taught to provide MAiD and argue that MAiD is medical treatment and healthcare to which Canadians have a right under the Canada Health Act and that conscientious objection by qualified providers, doctors and nurse practitioners should not be allowed..
I predict the same rapid expansion of VAD in Australia as has occurred in Canada. The one reason it might not be as great is to the extent euthanasia (a lethal injection) is restricted to people unable to undertake assisted suicide (the doctor provides the lethal medication for self-administration} as the Victorian legislation requires, it might be less used. The Tasmanian legislation does not require the person to be “unable to commit suicide” but gives the person an open choice between VAD by lethal injection or through assisted suicide.
“As of April 30, 2021, there has been 7549 reported assisted deaths in Ontario since legalization [in June 2016]. 7547 were euthanasia deaths (lethal injection) and two were assisted suicide deaths (lethal prescription).” (Schadenberg, 2021). What might this tell us?
Consider the relatively low total number of physician-assisted suicide deaths in Oregon, in comparison with Canada’s euthanasia death toll, in the twenty-three years since physician-assisted suicide, but not euthanasia was allowed in that state. The most recent data are that 3,712 prescriptions for lethal medication have been written and 2,454 people have used them.
Likewise, we can compare the number of euthanasia deaths in California, which allows assisted suicide but not euthanasia, and Canada. California and Canada have similar population numbers and both jurisdictions legalized assisted dying in June 2016. In the 2021 calendar year, Canada had 10,064 reported MAiD deaths and California had 486 reported assisted suicide deaths. (Coelho et al.) Quebec now has the highest euthanasia rate of euthanasia per head of population in the world.
It merits noting that France’s National Academy of Medicine has just voted “No” to euthanasia but “Yes” to assisted suicide. The United Kingdom has rejected both.
Lesson 1: Cannot Be Contained
In short, VAD cannot be contained once it is legalized because once we step over the clear line that we must not intentionally kill another human being, there is no logical stopping point.
I will describe three more lessons in Part II of this article, all of which, together with this first one, were identified by Archbishop Prowse.
Part II: LIVING WITH EUTHANASIA
HARM TO THE “COMMON GOOD”
The impact of legalising VAD goes well beyond the individual person who wants access to it and decides to use it. I briefly note here some of the consequences we need to consider.
We need to balance concern for individuals and respect for their autonomy and rights to self-determination with concern for the collective good. We must also think of damage to others, both in the present and future. We have obligations to protect the “common good’ and “social capital”, our society’s store of goodwill and caring for each other. Distinguished American academic Carter Snead describes this as “making others’ good our own”. .(O.Carter Snead, What it Means to be Human”, Harvard UP,2020) As was clearly evident in the COVID-19 pandemic: “our individual flourishing is bound up in collective well-being.” VAD will seriously harm our “collective well-being.”
As well we should also learn from our Aboriginal fellow Australians who seek wisdom by looking to the past through “collective human memory” – to learn from history – and to consider the likely future impact through “collective human imagination”. They invoke that time span in honouring Elders Past, Present and Emerging, and recognise it is not sufficient to look to the impact of what we decide only in the immediate present. Likewise, as they do, we must consider the protection of the “mob”, not just individuals, as important as the latter are. Societies have an “ethical tone.” how does legalizing euthanasia affect Australia’s “ethical tone” and zeitgeist? The “ethical tone of a society” is not set by how it treats its most privileged, powerful, wealthy members but by how it treats its weakest, most in need, most vulnerable ones. Dying persons fall in the latter group.
We need to redefine autonomy to include “relational autonomy”, not just respect for individual autonomy. How we view what it means to be human affects what we see as ethical or unethical. We are social beings and, as feminist philosophy recognises, our links to others must be protected and not laid waste. Similarly, Carter Snead argues that all humans have non-transactional obligations to other humans simply because we are both human.
Lesson 2: Accompaniment Not Lethal Injection
In the context of dying, people need compassionate accompaniment, not a lethal injection. Even many of those who have requested euthanasia change their mind when given good palliative care. That accompaniment takes time and we see ourselves as “time-poor”. Euthanasia is a time compressor.
We need to ask questions such as what is the impact of “time compression” on how we die. Are we are not prepared to watch and wait in order to accompany the dying person? Has “radical individualism” blinded us to the importance of relationships for humans? Have we become “human doings”, rather than human beings?
Some experiences cannot be time-compressed without destroying their essential essence, and dying in a relationship is one of them.
Consequently, it is an ethical imperative for each of us, our healthcare professions, institutions and systems, and our governments to ensure that high-quality palliative care is available for all who need and wish to have it. Moreover, that is required not just to act ethically but also in order to obtain informed consent to VAD, which is a legal requirement. Legally valid informed consent to VAD requires that the person be offered a choice of all reasonably indicated treatments, a group that necessarily includes palliative care.
IDENTIFY AND ADDRESS REASONS VAD IS SOUGHT
To reduce to the minimum the number of people requesting euthanasia, we need to understand the reasons for their requests and to find ways to make those reasons no longer important to them and provide alternatives they will choose instead of euthanasia.
These reasons include loss of independence, loss of dignity, feeling a burden on others, loneliness, isolation, loss of purpose and meaning, hopelessness, and demoralization, which are all matters we can address.
Lesson 3: Giving People a “Why” to live
When Concentration camp survivor physician Viktor Frankl was asked how he helped other prisoners to survive, quoting Nietzsche, he famously said, “give people a ‘why’ to live and they’ll find a how”. People need hope, which requires something to look forward to, even if it is only in the very short term, such as a visit from a grandchild.
Dying people can be healed, even when they cannot be cured. Healing involves helping people to overcome a sense of their own disintegration, which is a form of suffering, to feel whole. Easy access to high-quality palliative care for everyone, who needs and could benefit from it, is essential. However, we must support those caring for dying people. Palliative care is very emotionally stressful.
As has happened in Canada, we must try to prevent extensions of the people who can have access to euthanasia and the abolition of safeguards that restrict access to it.
We should identify the damage VAD does to our shared fundamental societal values on which we base our society. Respect for life is prominent among those values. VAD damages it at both the level of respect for every individual human life and respect for human life in society in general. This is especially dangerous for vulnerable people.
We should consider what our obligations are to future generations. Will we leave them a society in which no reasonable person would want to live?”
We must also find and write the stories of “good” natural deaths and real-life examples of the use of VAD that will cause some people, at least, to rethink their acceptance of it. For example, I wrote an article asking why people who approved of euthanasia and, with a person’s consent, taking their organs after death for transplantation strongly rejected euthanasia by removal of vital organs, under general anaesthetic, before death as the means of inflicting death. The organs would be more viable. I believe part of the reason is that the latter makes the person face the reality of what euthanasia involves – inflicting death on another human being. (Somerville, M. (2019). Does It Matter How We Die? Ethical and Legal Issues Raised by Combining Euthanasia and Organ Transplantation. The Linacre Quarterly. https://doi.org/10.1177/0024363919872623)
FINALLY, DOES ENACTING VAD LEGISLATION MEAN ALL HOPE TO AVOID ITS RISKS AND HARMS IS LOST?
For hope regarding the future, which is essential in facing the reality of euthanasia, I looked for precedents for abolishing legislation that, at the time it was enacted, was thought to be necessary and, I presume, ethical and beneficial to the people subjected to it, but that did great harm and, revisited with wiser, future eyes, was much later repealed.
A chilling analogy is to legislation permitting the Stolen Generations of Aboriginal children enacted by our grandparents and great-grandparents that we find appalling.
- Australian State Laws, from 1869 onwards, authorized separation of First Nations children from their families, the “Stolen Generations”.
- As with VAD, the laws were passed in each of the Australian states. They authorized the separation of Indigenous children from their families in order to assimilate them into the dominant White Anglo-Celtic culture.
- The first of these, as with the VAD legislation, originated in Victoria and, as with VAD laws, had a euphemistic title, the Victorian Aboriginal Protection Act 1869. The acronym VAD itself is a euphemism; it conceals and downgrades the impact of what is involved – inflicting death on another human being. The title of the Tasmanian VAD Act, End-of-Life Choices (Voluntary Assisted Dying) Act, likewise uses words that make what it allows seem benign.
- As with the VAD Acts, in both Victoria and NSW, a governing structure was established for implementation of the Aboriginal Protection Acts, but that does not ensure that what it permits is ethical. Both the Aboriginal Protection Acts and the VAD Acts bring to mind the saying, “Nowhere are human rights more threatened than when we act purporting to do only good”. As with the VAD Acts, the good that we hope to do blinds us to the risks and harms unavoidably also present.
- The Victorian Act stated that the government, through the Board it established, had the power to arrange the “care, custody and education” of Aboriginal children. The children’s parents were completely displaced as decision-makers for their children by these breathtakingly broad discretionary powers.
- Likewise, amendments in 1915 to the NSW Aborigines Protection Act 1909 gave the New South Wales Aborigines Protection Board the power to remove any Aboriginal child from their family at any time and for any reason.
- The last of the so-called Aboriginal Protection laws was not repealed until 1969.
In conclusion, even though we might lose the battle against legalizing euthanasia, the work of people who oppose euthanasia is not over. We must now work to prevent its expansion and abuse.
Lesson 4: Kill the pain, not the suffering person.
For all our sakes, both those who are dying now and those who are not yet dying, and for our descendants and their future societies, we must kill the pain and suffering of dying people, not the dying people with the pain and suffering.
That means we must work to help people to choose life, not death, by VAD, even though it is now legal in all Australian states and the ACT seems likely to join them. That will not be easy and will require much dedication and hard work on our part.
We need both to have hope and to make hope. Hope is the oxygen of the human spirit; it is to our spirit as oxygen is to our bodies. Without hope, our spirit dies with it, we can overcome even seemingly insurmountable obstacles. And we need moral courage. We should keep in mind the Bible’s most frequent exhortation: Noli timere – Be not afraid.
• Margaret Somerville is Professor of Bioethics in the School of Medicine and the Institute for Ethics and Society at the University of Notre Dame Australia