SASKATOON — Physician-assisted death is coming to Canada but universally available palliative care services are not, and that should be causing anger and concern, says a Saskatchewan palliative care physician.
“One is being legally mandated, and the other is not, and that leaves me cross,” said Dr. Vivian Walker, co-director of palliative care at St. Paul’s Hospital in Saskatoon. “The seismic shift in our culture toward physician-hastened or physician-assisted death is big, especially in the context of what we know to be poorly accessible palliative care services nationwide.”
Walker spoke at a public presentation March 8 at St. Paul’s Hospital, reviewing the recent history of the legalization of assisted suicide and euthanasia in Europe, in some U.S. states, and in Canada, raising concerns about “assisted death,” and expressing strong support for palliative care.
There is an urgent need to expand quality palliative care across the country, which right now is available to only some 30 per cent of those who need it, she said.
A Feb. 6, 2015, Supreme Court ruling struck down the ban on physician assisted death for “a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”
In consultations after the decision, an External Panel on Options for a Legislative Response to Carter vs. Canada was one of the committees and groups that have stressed the need for palliative care, reported Walker.
“The panel heard on many occasions that a request for physician-assisted death cannot be truly voluntary if the option of proper palliative care is not available to alleviate a person’s suffering,” she said, quoting the panel’s executive summary.
“Why is medical aid in dying to be nationally available and mandatory, but not palliative care? Or excellent psychiatric care? Or chronic pain services?” she queried.
“Every single study says that people should have access to palliative care. Why should we have this legislation for physician-hastened death, and nothing for palliative care? Medical Aid In Dying will be nationally available. It will be publicly funded. What about palliative care?”
Right now in Saskatchewan there are only 2.7 palliative care doctors, she said. “There are not enough of us to do the job that needs to be done, (or) to teach the students how to do good pain management,” she said.
A survey of the Canadian Society of Palliative Care Physicians in January 2015 showed that a majority of palliative care doctors are opposed to the legalization of euthanasia or assisted suicide. Some 74 per cent believe that if assisted death is legalized it should not be provided by palliative care services or palliative care physicians, Walker said.
She expressed her own hope that physician hastened death can be kept separate from palliative care. “You know, a guy that I cared for recently said, ‘I was so afraid to come in here, but these days have been some of the best days of my life.’ He was so afraid to come into palliative care. Well, if we are doing euthanasia alongside palliative care, what do you think that’s going to do for his fear?”
Walker reviewed a range of practices in other jurisdictions — in some places assisted suicide is accomplished by a doctor providing a prescription that is self administered, in others, euthanasia is accomplished by an injection administered by medical personnel. In Switzerland, for instance, assisted death happens outside medical institutions in stand-alone facilities.
She noted that Canadians are confused about end-of-life issues, about the meaning, differences and implications of such things as euthanasia, assisted suicide, “do not resuscitate” orders, palliative sedation, the right to refuse treatment, the right to refuse hydration, etc. and tend to lump everything together, rather than recognizing their many important distinctions.
Walker described the history and the philosophy of palliative care, quoting Dr. Cicely Saunders, pioneer of the modern hospice movement: “We will help you live until you die.”
The World Health Organization definition of palliative care says that it is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
“Palliative care doesn’t prolong or hasten death,” said Walker, noting that we live in a death-denying culture, which has created issues that surround the dying process.
“We spend a lot of money denying death, denying that we are sick, or that we are even palliatively ill. Patients who are palliative often don’t like the word palliative,” she said. “We want to bring good, symptom-managed care, comfort, family-centred care — but we can’t do if we are not allowed in because the word palliative is offensive, or because all we will talk about is cure.”
By taking every treatment to “buy more time,” sometimes all that patients are getting is more sick time, she said, calling for a clear and compassionate look at end-of-life issues, and the right to refuse burdensome treatments. “We need to get ready for our own dying journeys and not be so fearful about what they are going to look like. We need to be a society that makes dying filled with kindness and compassion.”
Walker shared images and stories demonstrating the beauty of the dying process when patients and families are fully supported and cared for — for instance by a palliative care team. “It is always a team in palliative care. We don’t presume that one person can deal with this on their own. Suffering is not a one-person job,” said Walker.
Responding to pain requires a holistic approach, she said. It involves “responding to ‘total pain’ — to pain coming from our social relationships, our physical condition, our psychological vantage point, and yes, even our spiritual point of view.”
There is also pain for family members who accompany someone through the dying process — at times, more pain than there is for the patient, she observed. “Sometimes the request to hurry things up come from kids who are having a lot of pain at the bedside of watching their loved ones die.”
However Walker noted that pain is not the main reason that people request physician-hastened death or medical aid in dying. In Oregon the top reasons that physician-assisted suicide is requested is the fear of losing autonomy (93 per cent) and the fear of being a burden on family and friends (49 per cent) with fear of pain or other symptoms the reason only about 28 per cent of the time.
Autonomy and dignity are two big words that underscore physician-hastened death, she said. “But are you undignified if you have an illness that takes you to a vulnerable place?” she asked.
“Somehow dignity has come to mean that I am under my own control, but the quality of being excellent, worthy or honourable is actually the definition of dignity, and it has nothing to do with function.”
Dying doesn’t make patients unlovable, she stressed, rather in their vulnerability they attract care and compassion.
“But people are very worried that they are just going to be a nuisance, that they are going to be a burden. They don’t feel that they are lovable, that they are worth the care,” she said. As an aside Walker urged her listeners to reach out to the elderly and others who “don’t know that their lives count any more.”
Although euthanasia is strongly advocated to relieve pain and suffering, doctors have increasingly “good recipes” to treat physical pain, she said. “But what do we do with other pain and suffering as a society? With voiced hopelessness? With loneliness?”
Walker pointed to vulnerable groups who are concerned about the legalization of physician-assisted death. “The Saskatchewan Association and Canadian Association for Community Living are worried about what this law will speak to the disabled in our society. What is their life worth? Or what of the freshly injured spinal cord patient — who almost universally wants you to pull the plug, (who) wants you not to treat them? And yet they go on to be absolute heroes to our society. What do we speak to them?”
There are also a lot of unanswered questions about how physician-assisted death will change palliative care, change perceptions of dying, or change grieving processes, she added.
“Will it change palliative care? I don’t know. Our living and dying? I don’t know. Will it become an expected norm for those who are aging and feeling hurt?”
Walker also raised the question of Medical Aid In Dying being promoted as a cost-saving measure. She encouraged those with concerns about any aspect of the issue to speak up and to get involved. “I would suggest that you let your government reps know — let the legislative persons know what you think. And if you have concerns, let them know.”
Conscience protection is vital, she said. “We need to figure out how we respectfully allow physicians to be who they are. I would hope that we would not insist that a physician step over their conscience in providing this. We haven’t done that in other issues that are controversial, and I hope that we would have the same respect now.”
She added: “The Supreme Court did say ‘willing patient, willing doctor.’ But some of these committees are now saying ‘no, that’s not adequate,’ and they are defining what effective referral looks like. What about conscientious objection? Choice is everywhere in the media. Well what choice will docs have? What choice will I have in whether I want to participate?”
This will be the law in Canada whether we approve of it or not, she said. “But I still want to be able to live with myself at the end of each day, and live according to whatever I feel is my rightful conscience, my conscientious duty. I hope we can find our way in a system that will respect both.”
She added again: “But shame on us if we think that 30 per cent palliative care access in Canada is acceptable.”