In his latest contribution to the Dying With Dignity Canada blog, Dr. David Amies takes a look at the history of palliative care and explains why it is not a substitute for medical assistance in dying. Casting palliative care as being in conflict with assisted dying only deprives suffering Canadians of a full range of choices, he writes.
Palliative care, perhaps better called comfort care, has always been part of the work of family doctors. During the past few decades, it has become an independent medical speciality for which its practitioners undergo formal training. At the same time, dedicated palliative care units have been set up that include physicians, nurses, physiotherapists, clinical psychologists and social workers. The task of these units is to provide the best possible relief of symptoms that accompany end-stage cancer, serious neurodegenerative diseases and other terminal illnesses for which there is no prospect of cure. Such units are available in larger centres across Canada but are rare or inadequate in the rural setting. By some estimates, only 20 per cent of the population has ready access to well-resourced centres.
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People suffering from end-stage diseases are frequently beset with unpleasant symptoms that render the quality of their lives barely tolerable. These include pain, nausea, depression and anxiety. Patients in the grips of illnesses like Lou Gehrig’s disease become increasingly helpless and unable to carry out the activities of daily living that the rest of us regard as essential to enjoying a reasonable life: moving about, self-feeding, toileting, even scratching the end of the nose to stop an itch. Palliative care teams are able to do an excellent job in relieving many of these symptoms. There is now little need for anyone to experience enduring pain. Drugs are available for its relief and trained personnel administer them artfully.
"A false dichotomy"
However, there can come a time in the course of many diseases when palliation is no longer sufficient. At that stage, sufferers may well wish to explore medical assistance in dying (MAID), now available to certain qualified persons following the passage of Bill C-14, the federal assisted dying law, in June 2016. Grievously ill patients may seek MAID to finally escape from their suffering, while also being grateful for the relief that palliative care has given them. There seems to be no sound reason why palliation should not lead towards that option. In other words, MAID ought to be considered as the final stage on the journey towards death, which has been eased by the care and skill of the palliative care teams. What excuse can there be for regarding palliation and MAID as either/or choices? To do so creates a false dichotomy that does not provide very sick Canadians with their full rights.
Society, through the medium of its government, must seek to make palliative care much more available to those who need it, as well as removing artificial barriers to obtaining MAID for those who choose it. The procedures to be undergone before medical assistance in dying can be obtained are overly complex and bureaucratic. The very language in which the relevant law has been written is vague and hard to interpret. Clauses in the law such as ‘death has become reasonably foreseeable’ give rise to uncertainty and confusion in the minds of patients and medical staff alike. The need for independent witnesses to sign the patient’s request, as well as the inclusion of arbitrary waiting periods after the request has been made, are likewise unnecessary hurdles for the ill patient to overcome.
More also needs to be done to address institutional barriers to assisted dying access. For instance, certain publicly funded health care facilities refuse to allow MAID on their premises because of conscientious objections to the procedure (although I would argue that brick-and-mortar institutions cannot have conscientious objections). Many health care practitioners do not wish to engage for the same reasons. Some go so far as to refuse providing referrals to willing colleagues or even information about available public resources. Of course, all of those working in health care have the right to refuse to carry out certain procedures if to do so would infringe upon their personal beliefs. However, none has the right to abandon their patients for conscientious reasons. At the very least, all have the obligation to provide useful information to enable patients to contact relevant health care agencies for assistance. To argue that providing such minimal advice is to be complicit in matters such as medical assistance in dying is unacceptably Pharisaical.
If I were to find myself suffering from end-stage cancer, for example, I would require the best possible palliative care. For as long as such management would enable me to live a tolerable life, pain and nausea free, I would be happy to accept the situation. However, once the art and resources of the palliative care team were no longer sufficient for my needs, I would seek to die, at a time and place of my own choosing, by accessing a medically assisted death. I would like the latter to be free of undue bureaucratic and administrative hassles. I would object very strongly to a regime that held that palliative care was an alternative to MAID. Furthermore, I would consider that my course of action — palliation followed by MAID, if necessary — to be part of my human rights, guaranteed by the Canadian Charter of Rights and Freedoms.
Dr. David Amies is a retired doctor in Lethbridge, Alta., and a member of DWDC's Physicians Advisory Council.