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Most Canadians do not have access to comprehensive palliative care

A version of this commentary appeared in the Huffington Post, the Medical Post and the Waterloo Region Record

Is it Time to Allow Assisted Suicide?This week, the Supreme Court of Canada has been hearing an appeal by the BC Civil Liberties Association that could grant terminally ill Canadians the right to assisted suicide. With this impending ruling and the passing of Bill 52 in Quebec (Medical Aid in Dying) and rumblings from parliament of another private members bill on assisted suicide, Canada is at a crossroads.

The Court faces a daunting task. The arguments they will hear are complex, diverse and impassioned, given our societal fear of death and the process leading to it. While some will try to reassure the court that many Canadians support physician hastened death, others will caution that popularity is hardly a trustworthy guide to constructive and just social policy reform. But first, the Court must consider whether their decision will improve care for the terminally ill.

Dying in Canada can be a scary prospect. According to a parliamentary report from 2000, most Canadians do not have access to comprehensive palliative care. Most will die in tertiary care settings due to inadequate community resources to support a home death. Furthermore, there are no national standards pertaining to pain control, symptom alleviation, psychosocial care and spiritual support. For First Nations, Metis or Inuit, receiving culturally sensitive palliative care is unlikely. Many patients in rural areas have little or no access to comprehensive palliative care.

The court must also consider who they would empower to carry out assisted suicide. By the time they reach licensure, many Canadian doctors have received less training in pain management than their counterparts in veterinary medicine. Most physicians have knowledge deficiencies that impair their ability to manage cancer pain and are poorly equipped to address end of life conversations. Other studies suggest that doctors who treat fewer terminally ill patients and know the least about symptom management are most likely to be in favour of assisted suicide, while those with more experience tend to oppose it.

Autonomy can be a risky argument for legislative change. In some jurisdictions with death hastening legislation, euthanasia or assisted suicide has been provided to infants and children, people with dementia or chronic conditions, those who have not given explicit consent, the mentally ill and most recently, an inmate who preferred death to incarceration. Permissive legislation will also increase feelings of vulnerability amongst those with disabilities, those feeling a burden and those who society perceives as unproductive. Also, the more autonomy is granted, the more it becomes a perceived entitlement. In the Netherlands and Belgium, groups have been advocating for the availability of death hastening measures for people over seventy years of age who are expressing ‘tiredness of life.’

The design and representation of studies examining the outcome of death-hastening can sometimes be misleading or falsely reassuring. Take for example studies suggesting that families of patients who opt for euthanasia or assisted suicide do not experience negative psychological consequences. Currently, there are no studies examining the bereavement experiences of family members that were not informed of their loved ones’ decision to pursue hastened dying. In Oregon, 10 percent of patients refused to include their family in the discussion and in another six percent of instances the physician did not know if families were aware of the request. Quebec’s Bill 52 stipulates that patients can refuse to have their families consulted.

The Court may wonder if palliative care can include physician-hastened death. Palliative care demands vigilant monitoring of the patient and individual responses to assuage physical, psychosocial and spiritual distress. Palliative care is a process of caring applied over time. As such, short of asking dying patients to dislocate from communities that lack appropriate resources, most Canadians will simply have to make do — or, if the law changes, take cold comfort in knowing that they can access death-hastening alternatives.

Palliative care cannot eliminate every facet of end-of life suffering. Preserving dignity for patients at the end of life requires a steadfast commitment to non-abandonment, meticulous management of suffering and a tone of care marked by kindness. In response to this dignity conserving approach, the former head of the Hemlock Society conceded that “if most individuals with a terminal illness were treated this way, the incentive to end their lives would be greatly reduced.”

That is a lot for the Supreme Court of Canada to consider. The country will anxiously await its verdict.

Harvey Max Chochinov is an expert advisor with EvidenceNetwork.ca and a Canada Research Chair in Palliative Care and Director, Manitoba Palliative Care Research Unit, Department of Psychiatry at the University of Manitoba.

Balfour M. Mount is the Eric M. Flanders Professor Emeritus of Palliative Medicine at McGill University.

October 21, 2014

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