Prof Harvey Max Chochinov, OC OM MD PhD FRCP(C), is Canada Research Chair in Palliative Care; Director, Manitoba Palliative Care Research Unit; Chair, Canadian Virtual Hospice; and Distinguished Professor in the Department of Psychiatry, University of Manitoba
Prof Balfour M. Mount, OC QC MD FRCP(C), is Eric M. Flanders Professor Emeritus of Palliative Medicine, McGill University
On October 15th, the Supreme Court of Canada will hear an appeal by the BC Civil Liberties Association that could grant terminally ill Canadians the right to assisted suicide. Given that impending ruling, the recent passing of Bill 52 in Quebec (legalizing euthanasia or what is euphemistically being called Medical Aid in Dying [MAD]) and rumblings from parliament of yet another private members bill on assisted suicide, Canada is clearly at a crossroads on this issue. The Court faces a daunting task. Where rhetoric ends, the war of what the data say begins; with each side invoking elements of empirical evidence that happen to support their particular argument. Add fear of death, dread of the process of dying—and our societal aversion to discuss these issues—and one begins to appreciate what the court is up against.
First and foremost, the Court must consider how people in this country die and whether their decision will move us toward improving care for the terminally ill. Dying in Canada can be a scary prospect. According to a parliamentary report from 2000, the vast majority of Canadians of all ages do not have access to comprehensive, quality palliative care. Most will have little choice but to 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, dictating what palliative care these facilities must provide. For First Nations, Metis or Inuit, the chance of receiving culturally sensitive palliative care is poor. And the further you reside from an urban centre, the less likely it is that you will receive care that will be fully attentive to your end-of-life care needs.
The court must consider who they would be empowering to carry out physician hastened dying. Currently, at licensure, the average Canadian doctor has received substantively less training in pain management than their counterparts in veterinary medicine. Most physicians have knowledge deficiencies that substantially impair their ability to manage cancer pain and are poorly equipped to address the complex issues that often underpin requests for physician hastened death. Like their patients, doctors do not like to feel helpless; little wonder, therefore, that those who have the least contact with terminally ill patients and know the least about symptom management are most in favour of assisted suicide, while those with more experience have tended to oppose it.
Autonomy has proven to be a risky argument for legislative change. With autonomy in the driver’s seat, no destination seems beyond consideration: be it death hastening for infants and children, people with dementia or chronic conditions, those who have not given explicit consent, the mentally ill and most recently, inmates who would prefer death to incarceration. Permissive legislation will also heighten feelings of vulnerability amongst those with disabilities, those feeling a burden to loved ones and those who society perceives as unproductive. It would also appear that autonomy is intoxicating; the more people have, the more it becomes a cultural norm and a perceived entitlement. Citizen groups in The Netherlands and Belgium have been advocating for the availability of death hastening measures for people older than seventy years of age who are expressing ‘tiredness of life’.
A scrupulous reading of the literature is essential as the representation of findings can be misleading and falsely reassuring. Take studies suggesting that families of patients who avail themselves of death hastening do not experience negative psychological consequences. Failure to show harm is not the same thing as proving lack of harm. For instance, a Dutch study documented a lower incidence of complicated grief for bereaved family and friends of individuals who died by euthanasia compared to a control group, whose loved ones died naturally. However, relative to the control group, a lesser percentage of respondents in the euthanasia group were partners, children or siblings of the patients. In other words, the result of this study could simply mean that more distant acquaintances grieve less intensely than close relatives. To date, there are no studies examining the bereavement experiences of family members that were not informed of their loved ones decision to pursue assisted dying. In Oregon, about ten percent of patients refuse to have their family brought into the discussion and in another six percent of instances, the physician will not know if families are 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. They must understand that palliative care demands consistent, vigilant monitoring of how the patient is feeling, accompanied by individually optimized responses, designed to assuage physical, psychosocial and spiritual distress. Palliative care is not a singular event, but rather a process of caring applied over time. As such, short of asking dying patients and families to dislocate themselves from communities that lack appropriate resources, most Canadians will simply have to make do—or, if the law changes, take cold comfort in knowing they can access death-hastening alternatives.
To be clear, palliative care is not a panacea that can eliminate every instance and every facet of end-of life suffering. However, the physician-patient relationship is complex and profound. Preserving dignity for patients at the end of life is comprised of a steadfast commitment to non-abandonment and a tone of care marked by respect, kindness; and an unwavering affirmation of patient worth. Little wonder that terminally ill patients who feel appreciated are less likely to consider euthanasia or assisted suicide. When this dignity conserving approach to palliative care was first published, 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.”
There is much for the Supreme Court of Canada to consider. The country will anxiously await its verdict.
Absolutely! Note that there are some elderly inmates who are not being released, even though they are not physically or mentally capable of offending, because of a lack of support in the community and a lack of suitable release places.
Becky, MA, LCPC, NCC
For too long, the world of medicine has seen death as a “failure” instead of the inevitable last stage of conscious life. Until physicians and the medical community can let death “out of the closet” which would involve addressing their own mortality and issues they might have– there will not be truly honest conversations or productive dialogue. If lives could be looked at as less of a commodity for the medical market, and the stages of death and dying were honoured and celebrated, allowing a person to be eased out of life with dignity, respect and lack of suffering– it seems this would be the most human-centric/patient-centric approach.
Forgive me any intellectuals and physicians who might find the following citation less than worthy, but recently there was a Facebook post going around showing how a family had honoured the last days of their pet’s life prior to planned euthanasia: going to special places, eating the favourite foods that were previously banned, cuddling, quality time and documenting these last memories then letting their loved one be put to sleep surrounded by touch and love and familiar, comforting voices. What is wrong when it is cruel to let an animal suffer, but it is medical sport to prolong the suffering of humans? I know solutions are not simple and can easily open doors to abusing a situation, but funny you don’t hear that being a common complaint re. the commonplace use of euthanasia in beloved animals. I’ve never heard– “wow, they put their animal down way too early . . .” because there is a SYSTEM in place. I have, however, heard on numerous occasions, sentiments such as, “my loved one was allowed to suffer more than any animal would have been.” And THAT is not right.
I am a person that has heard those conversations in the aftermath– most doctors and hospitals are long out of the picture by then.
I am a previous nurse, a mind-body oriented psychotherapist, married to a cardiologist who specialises in CHF, have used Dignity Therapy with numerous patients, have worked with families and patients coping with end of life issues and the aftermath and now supervise Biographers at a Hospice in New Zealand. Thirty four years ago my first job in human services was working in nursing home among death and dying– and I’ve intermingled with these humans, either dying or affected by death, throughout my career ever since. (I am old)
Janet Vandale, RN
I think that Dr.’s Chochinov and Mount might take exception to being portrayed as occupants of the academic ivory tower. Both of these people have, as I understand it, been attendant at the bedside of thousands of dying Canadians, providing dignity-preserving and life-affirming therapies at a time when dignity and life are most at risk. Opposing the notion of killing people in order to end suffering is not protectionist of palliative care as a field of study, as Dr. Ashe seems to suggest. Rather, opposition from those of us who practice in palliative care is based in a desire to protect and preserve a person’s humanity during one of the most profound of human experiences. Dying makes is uncomfortable to watch, and is often uncomfortable to experience. My practice may not yet be as long as Dr. Ashe’s, however I have witnessed many times the richness of experience, the gifts that are shared between family members and the profundity of accompanying a person as they complete their life journey. The slippery slope here is really one for society: do we really want to go down the road of eliminating the decidedly difficult human process of dying, and instead ease our discomfort with the quicker fix of lethal pharmacy? If so, I respectfully ask for this not to be a part of palliative care particularly, or health care in general.
Thanks for the response. I do have the greatest of respect for Drs Mount and Chochinov. I too have shared in the “richness of experience” and in the satisfaction of “accompanying a person as they complete their life journey” not only with many of my patients but also with my own parents who experienced peaceful deaths (and had excellent palliative care). This is the wish of all of us ….to experience that eu thanatos or good death. Unfortunately this does not always happen and so we are asking for permission to forego the suffering if the best of palliative care and the loving attention of our families cannot relieve it. Death can still be a sacred and dignity -preserving event both for patient and families.
It is a shame that we are using words like “medical-aid” “physician assisted” while a caregiver – physician is advising or allowing the use of a toxic dose of a pharmaceutical agent to achieve a facilitated death on an individual. It is neither medical or a physican should be assisting to use a poisonous or toxic dose of medication. A pharmaceutical agent every physician and caregiver has learnt to use in a therapeutic range and avoid toxic doses. All that education to stay in therapeutic range is wasted as to give or advise to take a poison does not need much of an education. If a society or community feels that euthanasia or facilitated death should be legal because of perceived suffering, fear, worry of the unknown or threat of fear and avoid “suffering” at any cost including end life is indeed sad. Physician should consider use of pharmacological agents in a therapeutic range for improving quality of life of patient, which he/she had learnt in their entire training and practice. Moving away from that to a toxic range, under the guise of compassion is pretentious and wrong. There are variety of non-pharmacological and pharmacological interventions that can comfort an individual. Legal sanction of a facilitated death if apporved by a community, need to be achieved by people who are non-physicians and understand the use of a poison. Palliative approach, Palliative and end of life care need to be considered and a soverign state should provide such care to all its citizens.
Gerald P. Ashe
It is with the greatest of trepidation and respect that I respond to this reasoned argument from two such honoured pioneers of the palliative care movement in Canada, but I feel compelled to do so. I have been in family practice for 37 years and for most off those I have been involved in Palliative care. To suggest that the reason that I support assisted dying is because of lack of “patient contact ” is disingenuous and couldn’t be farther from the truth. It is precisely because I have accompanied so many in their last journey that I am so convinced of the need for this alternative for Canadians. The authors’ suggestion that I may lack expertise in pain management is an insult to me and those of us who are working outside the ivory towers of academia. In fact studies have shown that the reason for requesting assisted is rarely pain but rather the loss of autonomy , a principle that the authors so tacitly dismiss. They once again drag out the tired argument over the “slippery slope”. To suggest that a decision by a competent individual translates to “permissive legislation” that threatens the lives of individuals with dementia or disabilities is sensationalist and I would not expect this from either of these authors. Palliative care is essential and assisted dying does in no way threatens it. In fact there will be greater pressure that ever to provide it in the highest quality. Those rare individuals who will chose not to suffer to the end must not be abandoned and should not be looked upon as “failures of Palliative care”.