Should people be denied choices at the end of life?
by Paul Russell | January 29, 2016
(pdxdiver January 3, 2010)
Should people be denied choices at the end of life? It’s a loaded question: the suggestion that someone is being “denied choices” naturally gives rise to a sense of outrage and indignation. “How dare they!”
But choices are not always possible, no matter how beneficent they may be; no matter how legitimate they may seem.
To suggest, therefore, that people are “denied choices” is to infer that such choices are, indeed, legitimate.
Some, of course, are a simple matter of choosing between one legitimate option and another. Some, but not all.
Recently, I attended the funeral service for my brother’s father-in-law. An impressive, staunchly working class man, he had died well. That, for most of us, is what it is all about: we live as well as we can and we die as well as we can. We take both life and death as they come.
This is not to say that we can’t do better; of course we can. We share a mutual debt in our society, to continually improve how we care for people at the end-of-life.
The choice that floored me was not in the care this fine man received, but, rather, in his choice of music for the funeral service. Walking past his coffin paying respects to the song, “Gangnam Style” was, well, a unique experience. After the initial shock, I realised how fitting it was for a man who was constantly making people laugh and who never failed to hold a cheeky twinkle in his eye. It was very much his choice!
His was not a church funeral. I can imagine that, had he chosen a religious service, he might have been denied his wish to go out to the beat of that short-lived dance craze. Competing interests: a choice versus a protocol.
Limits to choice are set everywhere around us. I would agree with the libertarian view that limits to choice (read by some as autonomy and self-determination) should be as few as possible. But we need to be mindful of that old saying: before one moves to knock down a fence, a wise person stops to wonder why it was put there in the first place.
When it comes to euthanasia and assisted suicide, the “fence” is the criminal code prohibitions on killing another person or helping someone to suicide, respectively. These are prohibitions that have existed since our laws were written and previously, into antiquity, in the laws of nature. We make choices of our own when considering these issues: do we allow ourselves to be swayed by the emotive claims of a “denial of choice” or do we decide, acknowledging the emotion, to think a little harder. These laws have been around for a long time.
The emotional case is strongly put by the media. The stories of people who are facing a difficult prognosis are heart-rending; they demand our attention. The fact that, like my brother’s father-in-law, most of us will die as well as we can with good support and medical attention is rarely news.
Harsh as it may seem, most of the stories we hear in the press are from an elite; well-to-do folk with higher-than-average education and out-of-the-ordinary life experiences who are supported, often, by a lobby that my American friends refer to as the “four Ws” – white, well off, well and worried.
When parts of the Australian media applaud the double suicide of a well-travelled, well-educated Melbourne couple who were not ill but simply growing old, I think we all need to stop and wonder where this is all going.
They have every right to put their case and to tell their stories, but they are not “most of us”. The polls may show soft support for a law change, granted; but polls don’t tell us anything other than the fact that most people feel emotionally disposed to want to somehow help people in difficult circumstances. To that, we all raise our hands!
If it were simply a matter of making sure that the best of care was made available for all, but somehow also catering for the choices of this elite, then maybe most of us would agree. But life is not simple; neither is this question simply about allowing for a choice to be made-dead. There’s much more to it than that; most of which is about consequences and risks.
What if it were not really our choice at all? It’s not. We can ask for many things from our doctor; we can make legitimate choices, where possible, between treatments and even the choice to refuse treatments, but if we ask to be made dead, we’re really asking our doctor to make a choice to kill us or to help us to kill ourselves. In reality it is his or her choice, not ours and it comes with consequences.
That choice involves a value judgement. It requires the doctor, consciously or otherwise, to be in agreement with you or I that our lives are no longer worth living; that whatever it is that ails us, our worth as a human person is diminished to the point that “dead” is better than living.
We set dangerous precedents when we allow one person to discriminate against another on the basis of a perception of the relative value of a life. None of us need to look too far to find in history and even in our current world the effects of such discrimination writ large.
How many times have we seen and heard the word “burden” used in the same sentence as the elderly? Those for whom we all owe a debt of gratitude; those on whom we should focus attention and support bordering on the extravagant, simply because they came before us, nurtured us and helped form us. Burdens?
It is the acceptance, even unconsciously, of such messages that places already vulnerable people at risk of the suggestion: “Well, Gran, there’s always…” Even if they are never coerced to an early and unnatural death the very existence of that choice can create both an expectation and a resident fear.
The very use of the term, “lives not worth living”, sends chills down my spine as it does many others who either live with a disability or care for someone who does. My Irish colleague, Kevin Fitzpatrick, a paraplegic who recently succumbed to the ravages of cancer would often tell a story that illustrates this well:
"When non-disabled people say they despair of their future, suicide prevention is the default service we must provide. Disabled people, by contrast, feel the seductive, easy arm of the few, supposedly trusted medical professionals, around their shoulder; someone who says ‘Well you’ve done enough. No-one could blame you.’”
The euthanasia and assisted suicide lobby know these problems (and others) well. For the most part, they do not deny that they are real. And, in so far as I accept the genuine nature of their concern, to their credit, they offer “safeguards” designed, as we are told, to protect vulnerable people.
Yet I have never come across a safeguard that could guarantee safety for vulnerable people. “He would say that!” some may reply. But unless we describe in the law every possible illness and every possible remedy what possibility is there that we can ensure safety? The variables are infinite and so are the vagaries of human nature expressed through a myriad of personal relationships, both good and bad.
What the supposed safeguards do well is protect doctors. Doctors are provided with an immunity from prosecution for homicide or assisting in suicide if they comply with a set of procedures.
In Belgium a doctor was recently referred to justice over the euthanasia death of an older woman who was fit and well but who was simply grieving over the death of her favourite daughter. The story was chronicled in a TV documentary last year. The doctor, Marc van Hoey, was referred to the law, not because the lady was not ill, not because there were alternatives available that were not explored (there were), but because he did not do the euthanasia “carefully”. In other words, he did not consult with a second doctor.
Dr van Hoey is on the public record as noting that, in the Belgian law, the second opinion need not agree with the euthanasia request. All that is needed is that the second opinion be noted. Van Hoey would have been protected in law if the medical records had noted a second opinion, regardless of the opinion itself. No concern at all about anything else.
That Belgium has eclipsed The Netherlands in having the most liberal interpretation of their euthanasia laws would make an interesting sociological study. The development of euthanasia ostensibly as a “last resort” in its initial conception for those who are dying and who have tried every option, to an interpretation where it is now applied as an “early intervention” and, as described above, even for people who are not actually ill, invites the inevitable conclusion that euthanasia has moved from being available to a limited cohort in limited circumstances to being seen as a human right for all.
Belgian euthanasia supremo, Dr Wim Distelmans, co-chair of their Euthanasia Evaluation Commission, recently claimed this to be the case in response to the Catholic Archbishop of Brussels’ insistence that euthanasia not be carried out in Catholic medical and aged care facilities. Distelmans claimed publicly that euthanasia in his country is a human right. It is Distelmans’ commission that referred van Hoey to the Department of Justice; yet his commission has turned a blind eye to the admission by his friend, Dr Marc Cosyns, that he has never once complied with the Belgian euthanasia reporting system in more than one hundred cases where he provided euthanasia. No value in safeguards if there are no reports.
When a society views euthanasia and assisted suicide as a “right” there are inevitable consequences. If euthanasia is a right, on what flimsy grounds can we deny it to those who fall outside legislative criteria, such as having a terminal illness, or having less than six months to live? Human rights, by their very nature, are universal. The same emotive argument mentioned at the beginning of this article will apply; and even if you or I were to baulk at the thought of extending the law, its application, or both, there would be no logical reason to hold ground. In fact, to do so could be viewed as discriminatory.
And so, when we are told that a euthanasia and/or assisted suicide bill has “robust safeguards” we may be inclined initially to the thought that these concerns and others will be taken care of. Think again. Though the mover and the supporters of said bill may well believe that their efforts make the putative law secure, it can never be the case. This invites the conclusion that the principle intended effect of these safeguards is really more about trying to assuage our concerns and those of our parliamentarians so as to see the bill pass. It’s a fair thing that those pushing for change will advertise the benefits of their product, but, under scrutiny, they fail.
That fence needs to remain. Public safety demands that it is honoured. Perhaps, when we can put this issue aside, we can instead refocus our attention on compassion towards those in need through the provision of better care.