By Dr Kevin Fitzpatrick OBE, is the director of Hope Ireland. (First published on Alex Schadenberg's Blog)
February 6, 2015 was a disastrous day for Canadians with disabilities - not just for them - but for all disabled people everywhere, and all people made vulnerable by the fact that they are facing end-of-life decisions.
The Supreme Court of Canada (SCC) judgement writes euthanasia into law on the grounds of disability alone. That is archetypal disability discrimination - in this case, to death.
Disabled people must resist what is the biggest threat we have seen to our lives to date, written into a legal judgement. So must everyone else: this is about the kind of society we all want to live in.
Within the SCC judgment, there are deeply flawed assumptions about human life and living in general, and specifically about what it means to live with a disability. There are significant factual errors also.
Disabled people opposing the legalisation of euthanasia/assisted suicide have never doubted that some disabled people will reach a view that 'they cannot go on like this'. But despair is not confined to those disabled people, or people who are gravely ill, or people who feel they have 'lost everything'.
Why then single out disabled people as a 'special group' amongst all those who will consider taking their own lives at some point? Disabled people are not a 'homogenous group' - we reflect the whole cross-section of society (which is why it is wrong to speak of 'the disabled'). So some disabled people will absorb and reflect the thinking of their time, of their communities, and simply accept that this very public, and very poor debate conducted in the media, must have some force. Others will reflect more seriously.
Most disabled people do not count their lives as ones of unmitigated or 'irremediable' suffering. Our despair comes, not from being disabled per se, but from the institutionalised discrimination we must battle on a daily basis, being excluded from living independently, bombarded on all sides with the idea that we are 'less than fully-paid-up' human beings, being forced into poverty, denied basic human rights. Such is the discrimination we face, based solely on the fact that we are disabled, and no more starkly than in having us 'marked' for euthanasia by the SCC decision in Canada.
There are terrible errors of fact in the SCC judgment too:
Â· The idea that anyone will be 'forced' to end their life prematurely - based only on a fear of becoming so incapacitated that they cannot end their own lives - is false.
Â· Another myth is that even psychiatrists agree amongst themselves about what constitutes 'capacity'. The idea that there is one assessment which will guarantee this person is 'competent' now - and will be so tomorrow and the next day, until the moment they die - is false.
Â· Many people believe that their loved ones were left to die of starvation and thirst, 'a most horrible death'. Neglect has meant many such deaths are real. But it is also true that when someone is actually dying, giving food and certain amounts of water, when their organs are failing, increases their final suffering from the human experience of dying. Good palliative care practice in such moments includes keeping the patient's mouth hydrated with swabs. The proper titration of drugs eases pain.
Â· So-called 'advance directives' are not helpful. Peer-reviewed research shows that people are more likely to express a wish to die post-operatively, and more likely to ask to die the more serious the operation. That 'desire' fades as the patient recovers. If a psychiatrist assesses someone post-operatively to have a clear and settled intention to die, they may be 'right'. But if patients are assessed weeks or months later they often no longer wish to die. It would be too late for those who are already dead. Death removes all choices and the possibility of a change of mind.
But it is not only after major surgery that such thoughts run in patients' minds: and yet it may not take so long to see things differently.
Imagine a man having lived with a disability caused by trauma or disease, say for over forty years old, who has just been delivered a diagnosis of an incurable form of cancer. Is it not perfectly natural to be devastated? Is it not entirely understandable in such a moment to say 'Ok, I've had enough now' and to ask 'What happens if I do not take the treatment?'
Is it also understandable that after the initial reaction the man remembers he will meet his daughter for dinner that evening and must consider how he will explain to her and his other children, his wife, his family, his friends that he will not even try to meet this last battle? Every suicide involves other people.
If the doctor reacts to the initial 'I can't go on' with a shrug of the shoulders and says 'It's your choice. We have the means. It's legal now.' how will that help the terrible end-of-life decisions the man is now faced with?
If the doctor remains clear and gives information about the bodily processes which will take over, absent of treatment, and waits sympathetically, returns later to check the patient's thought-processes, allows for shock and grief to pass - even the tiny bit of time necessary for some re-balancing in the man's unbidden reactions - is this not a more compassionate response?
Evidence shows that the main reason people give for wanting to die is not to be a 'burden on others'. It is hard to suffer; it can be harder to watch a loved one watching you suffer. That is a critical part of our human experience. Their sense of powerlessness, loss, grief, impending doom, their exhaustion, their very love, all play a part, mixed at times, worse one time than at another, confused and sometimes even unrecognised.
The SCC judgment also says:
The prohibition denies peopleâ€¦the right to make decisions concerning their bodily integrity and medical careâ€¦by leaving them to endure intolerable suffering, it impinges on their security of the person.
There is no definition of 'intolerable suffering'. Certainly some people may hold to one decision as to another, but the lie in this court ruling, is that there is anything to be described as 'bodily integrity' or that it ever makes sense to say 'It's my body' or any of the usual formulations of that idea. No-one can own their body - we can own a house or a coat or a car. The problem is that this looks like a meaningful sentence - it is actually nonsense. It is a corruption of the concept of 'ownership' which has come to be accepted without reflection. And yet on such nonsense are court rulings of such magnitude built.
So the real question always becomes - who is such a law for?
It is for the protection of doctors, family members, others who are willing to provide suicide assistance.
The majority of doctors do not want any part in ending the lives of their patients. The majority desire to ease suffering. So those who want to participate in taking the lives of other human beings must be forced to explain their motivations.
There are far too many nuances in human and family life to ever be clear who is influenced by their supposed loved ones to come to want die. But there are also those who feel they are acting genuinely from love and compassion. Is such a law for them too?
I hope that our first response to someone who says 'I want to die' is always to help him out of despair, verify and treat depression, succour him to a different perspective on his life, its value. I fear the hope is often in vain.
If someone with Spinal Muscular Atrophy says 'I despair of my life and my future' why then is the (supposedly) humane response to put a 'legitimising' arm around her shoulder and say 'Well, after all these years, you have done enough. We all understand why anybody in your situation, should want to die. We would, in your place. Look how it will ease your family's pain and burden. So yes, absolutely, we will do everything we can to help you to commit suicide. We have a lethal dose of drugs waiting'?
What about her husband, her family, her friends, her job?
That reaction and it may indeed sometimes be (mistakenly) thought of as one of simple human compassion is based solely on discrimination towards disabled people as disabled people. The condescension in it is worst of all.
That's where the dangers lie. As we keep saying, it is not the fact that individuals should ever reach a decision to die that is at stake here: it is the consequences of legalising such a reaction to the decision that matters.
The false belief that has taken root is that suicide is (still) bad but euthanasia/assisted suicide is good, especially for disabled people who 'should want to die.'
As Baroness Jane Campbell, the longest survivor in Britain with SMA, has pointed out, the proposed legislation puts her 'in the waiting room' so that one day when she is feeling low what would stop any doctor from responding to her request to die? (House of Lords debate, Hansard 17 July 2014 - I paraphrase only a little for the sake of brevity).
Opposition to euthanasia and assisted suicide based on evidence of disability discrimination.
Jane Campbell: Assisted suicide could lure me into the grave.
SCC assisted suicide decision is irresponsible and dangerous.
Opposing the Supreme Court of Canada assisted death decision.