A brave new world of euthanasia?
Normalising euthanasia as a compassionate option may blind us to hopeful alternatives and short-circuit treatment possibilities, argues Jannah Dennison
The proposed End Of Life Choice Bill has elicited story upon story. Stories of death and dying, done both well and badly; stories of hope, fear, anger, and beauty. And cutting through the emotion have been key words: Choice, compassion, dignity, safety. Good words; aspirational words. Like a panacea, whose meaning is self-evident, these words have been used to distil the conversation; to simplify the messiness, towards - some say - a brave new world of euthanasia deaths.
But these words hold their own messiness. We must dig in behind these words to see their complexities, their nuances. We tell our own stories through these words, stories that vary greatly in theory and practice. When we hear words such as choice, compassion, and dignity, what is the actual story we are each telling about the world? How will it look, when we continue to live out of that particular story of how we live and die together?
The desire to have the choice to access euthanasia, for example, is central to many people’s support for the Bill: ‘my body, my choice’. And there is usually the assertion that such a choice would be a private matter - surely, someone’s personal decision to die by euthanasia on a drizzly morning in August doesn’t affect you, personally? And if one objects on principle, one can opt not to exercise their choice, yes?
That is a story of autonomy and the exercise of individual rights, undertaken privately. But it is also an impossible story. The idea that one’s personal choice in this issue has no bearing on others is a misconception. The very existence of the choice - the legal provision of the possibility of euthanasia - would profoundly change many things. Medical practitioners would have the right to discuss it as an option. Family members would be able to suggest it. And individuals who decided to access it would involve at least two other people. You may decide that you accept the familial, medical, legal, and social implications of this. But let’s not pretend that these implications are not there. Because another story at play here says these inter-relational consequences are far too serious to countenance. We are, for better or for worse, in this together.
The idea that one’s personal choice in this issue has no bearing on others is a misconception.
This oversimplification of such words is common in the public discourse around the EOLC Bill. I once heard on RNZ's The Panel a plaintive cry for immediate change - ‘It’s GOT to happen. Why does this have to be so hard?’. Usually borne out of compassion, and a bewilderment that we can’t just eliminate suffering, this is understandable but naive. There is nothing simple when we are contemplating the intentional taking of human life, the last bastion within legal, ethical, and medical boundaries. The conversation involves the nature of suffering, and its responsible alleviation; our relationships with one another, and ourselves; even personhood itself. The stories that we tell will vary; but let’s not patronise this conversation with assumed simplicity.
Such discussion becomes even more complex and emotional around the question of compassion. Why, after all, should we not liberate people from their unnecessary suffering, when things are terminal? Wouldn’t you do the same for your dog?
In most aspects of life, the stories we tell about compassion tend to align. We all know that suffering is inevitable. And we tend to agree that compassion is a ‘suffering with’, and an entering into another’s pain. We use social, therapeutic, medicinal, and spiritual means to reach out to one another. The mandate to impart hope is given to us all; our compassion is fundamentally life-affirming.
But our stories can diverge when we come to acute suffering and/or terminal illness. Here, compassionate death through euthanasia is promoted as part of a toolbox of compassionate responses. Compassion, in these instances, is no longer unequivocally life-affirming. It may include a route to death.
The Susan Austen assisted suicide case last year epitomised how a normalising of support for compassionate death might look. Annemarie Treadwell, who took her life, was not terminally ill. She suffered from arthritis and depression, and became isolated. In her own words, she may have lived at least another 10 years. But Austen’s support of Treadwell’s wish to die was hailed as compassionate and noble. My view is that both ultimately became blinded by the idea that peace for Treadwell would be found in the elimination of her suffering, through death.
This case highlights the grave implications of this Bill (I recognise that Treadwell would not be a candidate under this Bill, but the point remains): Once you normalise euthanasia as a compassionate option, this may blind us to hopeful alternatives, and may short-circuit creative and loving possibilities to care for people. The outworkings of compassion can become oriented not towards our work ‘in life’ to make the sufferer’s existence more bearable, but towards the eradication of life to eliminate the suffering.
We cannot sufficiently measure suffering. We cannot legislate against the human heart, and the greed, selfishness, and fear that may emerge when contemplating the deaths of others, and our own.
Even if you agree in principle with such a point of departure, the problems of application are acute. Suffering is amorphous and changeable, impossible to quantify, and deeply subjective. Diagnoses are not infallible; prognosis are only an estimate. What the suffering person deems best may change week upon week. Coercion exists. Relationships with our doctors are often superficial and transient. Unexpected reversals and reconciliations may occur in the final weeks of life.
And so there is nothing ‘safe’ about any of this. We cannot sufficiently measure suffering. We cannot legislate against the human heart, and the greed, selfishness, and fear that may emerge when contemplating the deaths of others, and our own. We cannot pre-empt all new definitions, and challenges to the precedents. So: one story here is that of ‘safety’. Another story asks the question: how many untimely deaths are okay? One? 10? 50? This is not fear-mongering, which is the peddling of irrational fears to spread confusion and aversion. This is a sober assessment of what the story we are telling will look like in the longer term.
Other countries have begun their own stories of euthanasia based on particular conceptions of choice, compassion, dignity, and safety. And some who have the longest stories are regretting it. Theo Boer, a professor of ethics in the Netherlands, was a former supporter of euthanasia and a long-time member of a euthanasia review board who reviewed around 4000 cases. But he is now an outspoken critic of the practices that have emerged, saying “Look closely at the Netherlands because this is where your country may be 20 years from now ... The process of bringing in euthanasia legislation began with a desire to deal with the most heartbreaking cases – really terrible forms of death. But ... we have put in motion something that we have now discovered has more consequences than we ever imagined.”
It is tempting, as the Netherlands did, to say ‘despite everything, we must try, for the sake of the really difficult cases’. This is not easy, either way - to vote against this Bill still means looking in the face of a motor neurone sufferer and saying ‘no… we can’t.’ I don’t regard that as some kind of ‘win’. But here, it is illuminating to ask the palliative care specialists at the coal-face. If we were consigning some people to inevitable bad deaths, with no hope of improving palliative practice, you would expect palliative specialists to be vocal supporters of this bill. But, in the overwhelming majority, they’re opposed. Why is this?
Because they have a hopeful story. This story tells of alleviating suffering increasingly well, utilising choice, and compassion, and in ways that are safe, and dignified. In the words of Dr Hinemoa Elder, “It offers other choices to ameliorate suffering of all types.” It tells of rapid progress in the improvement of palliative care, which needs more resourcing. It knows that dignity is conferred one to another through ‘exquisite care’ for one another; it is not an inherent quality. It knows that euthanasia seems alluring, but will only draw us further into our ‘autonomous’, isolated selves. And it accepts that compassion exercised safely within the bounds of the living is beautiful, exhausting, creative, tedious, hopeful, inefficient, and joyful. And deeply human. This, not euthanasia, is the story that will help us live and die together well.