Tom Koch is a Toronto-based gerontologist and medical ethicist specializing in chronic and palliative care.
A Quebec court’s decision this week to strike down “restrictive” elements of the federal law on medical assistance in dying (MAID) almost certainly will be appealed. And it should be. The decision is flawed, and dangerous.
At issue are current federal regulations requiring those seeking medical assistance in dying to be near the inevitable end of their natural lives. Justice Christine Baudouin of the Quebec Superior Court wrote that to deny it to others with serious but not terminal limits is too restrictive, “violating the rights to liberty and security of [the plaintiffs].”
A similar case is before the courts in British Columbia, brought by a woman with spinal muscular atrophy who fears the progress of her disease will likely be influenced by this decision.
The Quebec judgment replays the original debate over MAID and its focus on autonomy and a “right to die with dignity.” Ignored, then and now, is what should be a prior right: to live with dignity despite restrictions. Without that, the former becomes a default choice for those facing the obstacles of chronic illness without the palliative, psychiatric and social support the latter would need.
One plaintiff, Nicole Gladu, has postpolio syndrome and says neither her resulting pain nor respiratory limits are well controlled. And yet, in palliative medicine, there are a range of options to minimize the first and to protect the latter. We do not know what has been tried, or what should have been tried, because the court’s focus was on rights rather than the necessities of care.
The second plaintiff, Jean Truchon, has lived with cerebral palsy and is now totally paralyzed. He had just one operative limb most of his life and now that is gone. He doesn’t want to live like that. And yet, many have found that with appropriate pain management and a range of assistive devices and home support that a physically restricted life may be full. Examples abound: These, in a very partial list, include the late cosmologist and physicist Stephen Hawking (ALS), the late lawyer and activist Harriet McBryde Johnson (spinal muscular atrophy), the late journalist Brian Dickinson (ALS), the late Ontario Justice Sam Filer (ALS), and Death with Dignity lawyer and activist Diane Coleman (spinal muscular atrophy).
What distinguishes them, and similar examples, has been an attention to their pain and the assurance of the kind of assistance that permits a restricted life to be lived fully.
“But that’s them,” some might say, “I’m not a physicist or lawyer. I can’t afford the kind of help they got." If that’s the case, then the failure is judicial and social. If one chooses to die in the absence of appropriate pain control or the necessities of a restricted life, then the failure is ours. Constitutionally protected “life, liberty and security of person” should not mean just a medical death but, first, the liberty to live one’s life fully, whatever the challenge.
If one insists this is about autonomy and personal choice, the question is the degree to which we assure the alternatives to MAID, the tools needed for a life continued. At present, what we provide, in our various provinces, is often insufficient.
It is not paternalism to question the choices of those who may be discouraged, or afraid, of a life they think cannot change. Fear of a different future shouldn’t be a reason for medically assisted death today. In such cases it is, or should be, our obligation to promote that life’s continuance through clinical and social assistance. That is, or would be, the Charter of Rights and Freedoms’ “liberty” and “security of person.” Otherwise, by what right do we discourage and prevent the suicides of many who think their life not worth living?
In my work with people with chronic conditions – a debilitating stroke, for example, or early dementia – I say, “Yes, the life you lived has ended. It will never be the same. But there is the opportunity for a good life, albeit one different. Give us a chance to show you how to live a full life in a different way.”
That life will not be “autonomous” – and really, none of us is independent – but one based on familial, personal and social support. And that should be our focus, in courts and in society at large.
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