Kay Carter, Gloria Taylor, #Dr. Donald Low, and Hassan Rasouli – all names of Canadians who have made headlines recently for being at the forefront of high profile challenges to our current legal landscape regarding #end-of-life issues.
Kay Carter (through her family) and Gloria Taylor were the lead plaintiffs in the recent challenge to the Canadian law prohibiting #assisted suicide, which will most likely be the first assisted suicide case to be heard by the Supreme Court of Canada since the Sue Rodriguez case twenty years ago. Ms. Carter died in 2010 after seeking assisted suicide in Switzerland; Ms. Taylor died of complications from her condition about a year ago.
Dr. Donald Low, who was central to helping Toronto through the SARS crisis, made headlines for a video he filmed eight days before he died from a brain tumour, in which he made an impassioned plea for Canadians to reconsider their opposition to assisted suicide. Hassan Rasouli is the patient at the center of the case in which the Supreme Court of Canada just affirmed that physicians must obtain consent to withdraw life-sustaining treatment. Although the two issues are very different, the ethical thread that runs through both is the battle for control over life and death decisions.
These stories are very compelling. When there is someone in front of us who is suffering, or has an illness that will bring suffering with it in the future, the issue can seem simple. They’re going to die soon anyway, so why not give them the control over the timing and manner of that death? Isn’t it cruel and inhumane to refuse them that control? Is there really any ethical difference between allowing a patient to refuse CPR, or to withdraw a life-sustaining feeding tube, or providing high doses of opiates that may hasten death, and assisted suicide? It is for these reasons that opinion polls consistently show that the majority of Canadians support assisted suicide. So why is there such reluctance to change the law on the matter?
It is an interesting feature of human psychology that we find individual stories more compelling and persuasive than aggregate data. As the famous quote goes, “One death is a tragedy; one million is a statistic.” I don’t know how anyone can watch Dr. Low’s video, in which he shared his fear of dying what he considered to be an undignified death, and think, “No, sorry, you should have to endure such a death.” However, public policy can’t be driven by individual stories; with issues like assisted suicide the Supreme Court must consider the broader societal implications of the practice.
There are a number of concerns that have been raised about the societal implications of allowing assisted suicide. Some fear that it will erode our general commitment to the value of life, which can lead us down the dreaded slippery slope. We might start by allowing terminally ill people under very strict criteria to seek assisted suicide but inevitably, so the argument goes, we will relax those conditions and end up with widespread assisted suicide.
Others fear that allowing assisted suicide may have a negative impact on funding for palliative care and hospice, and may even be used as a way to conserve health care resources. Another societal implication, mentioned by the Supreme Court of Canada back in 1993, is the concern about the impact on vulnerable patients near the end-of-life – that patients may be coerced into assisted suicide, or may seek assisted suicide prematurely. These issues have all been raised during the debate over Bill 52, Quebec’s proposed legislation supporting “medical aid in dying.”
This latter risk, I believe, is the main remaining stumbling block preventing the legalization of assisted suicide in Canada. What is different now from when the Supreme Court last examined the issue in 1993 is that we now have20 years of evidence from other jurisdictions around the world that have legalized assisted suicide: three states in the U.S., The Netherlands, Belgium, Switzerland, and Luxembourg.
Last year, B.C. Supreme Court Justice Lynn Smith ruled that while the evidence shows that some risk exists, that risk can be managed through carefully designed and well-monitored safeguards. Would the safeguards be perfect? Of course not, no set of safeguards could be. There might be people who get talked into seeking assisted suicide, and the media have reported on stories of patients from other jurisdictions who requested assisted suicide only to find out they were misdiagnosed or their prognosis was inaccurate. But these uncertainties are inherent in the practice of medicine and are no different from the risks associated with the status quo. People could commit suicide now without help, despite being misdiagnosed. Decisions are made in hospitals every day to withhold or withdraw treatment based on diagnoses and prognoses that could turn out to be inaccurate or incorrect.
While the B.C. Court of Appeal overturned the B.C. Supreme Court’s ruling in a 2-1 vote, they did suggest a compromise solution should the Supreme Court of Canada decide to revisit the 1993 decision. That compromise would be to maintain the legal prohibition on assisted suicide but introduce a “constitutional exemption” that would allow people who meet very specific criteria to petition the courts for access to assisted suicide on a case-by-case basis. Though it is impossible to predict what the Supreme Court might do if they revisit the issue, the compromise offered by the B.C. Court of Appeal appears to be a very reasonable way to strike a balance between protection of the vulnerable and respect for the autonomy and dignity of dying patients.
Hassan Rasouli’s story reflects the theme of control over life and death decisions but in a very different way. Mr. Rasouli has been on life support at Sunnybrook Health Sciences Centre since 2010, when he contracted bacterial meningitis as a complication of brain surgery. He was initially diagnosed as persistently vegetative but his condition has since been upgraded to minimally conscious.
His physicians had proposed withdrawing life-sustaining treatment to his wife but she (with the support of their children) insisted that such treatment continue for two reasons: 1) their religious beliefs forbid removal of life-sustaining treatment; and 2) they weren’t confident in the diagnosis because they believed he responded to them.
These sorts of disagreements happen on a daily basis in ICUs across Ontario. Most of the time they are successfully resolved internally through communication and negotiation. When that doesn’t work, however, the mechanism that is available to physicians is to apply to the Consent and Capacity Board (CCB) on the grounds that the substitute decision maker (SDM) is not adhering to their legal obligations.
Mr. Rasouli’s physicians believed that continued life-sustaining treatment was not in his best interests because it would only serve to maintain him in a state in which he had no reasonable chance of a meaningful recovery. Their job, they argued, is to use their expertise and technology to benefit patients while minimizing harm – that is after all the primary ethical responsibility of every physician.
In other words, they claimed that forcing them to keep Mr. Rasouli alive given his diagnosis and prognosis is actually forcing them to practice unethical medicine. Moreover, they believed that they should not be required to obtain consent from the substitute decision maker to withdraw treatment under these circumstances. So instead of going to the CCB they went directly to Ontario Superior Court and ended up appealing the case all the way to the Supreme Court of Canada.
In a 5-2 judgment the Supreme Court maintained that physicians must obtain consent to withdraw life-sustaining treatment. Since this case focused on very specific legal arguments, and did not address the broader issue, the narrowly-focused judgment was likely disappointing to many who have an interest in the broader issue and were hoping the Supremes would tackle it for the first time in Canadian history.
Others have applauded the ruling, calling it a victory for patients’ rights and religious freedom. They would argue, correctly, that disputes over the appropriateness of life-sustaining treatment are value judgments about what ‘benefit’ means and which benefits are worth pursuing given the harms and costs involved. Their conclusion is that when such value judgments arise, the patient’s values should always take priority. Allowing physicians to unilaterally withdraw life-sustaining treatment would be even worse than paternalism – it would allow physicians to supplant the patient’s values with their own.
The reality is that our HCCA and the CCB processes are designed around precisely this conclusion; our consent legislation and legal dispute resolution mechanism are very well suited to protecting the interests of individual patients. And that may also be their most serious flaw, for two reasons.
First, these disputes never arise between health care providers and cognitively intact patients; they are always disputes between health care providers and substitute decision makers, who (often) claim to be speaking on behalf of the patient. If the SDM can make a convincing argument at a CCB hearing that the patient would want continued treatment, physicians have no grounds upon which to challenge that argument (unless the patient expressed contrary wishes to members of the health care team while capable). The SDM does not have to provide any tangible evidence to support their argument, such as a written advance directive. The Ontario Court of Appeal even recognized this flaw in the process when Mr. Rasouli’s case came in front of them.
The second reason why the extreme patient-centredness of our legislation may be its most serious flaw is that there is no room to factor societal interests into the equation via consideration of the resource impact of keeping patients like Mr. Rasouli alive. This is a touchy subject in Canadian healthcare because we don’t like to think about costs when we’re talking about such sensitive issues for fear that we might be perceived as putting a price on someone’s life. But I’m not sure how much longer we can continue to have the luxury of avoiding the discussion.
Tens of millions of dollars have been cut from hospital budgets across Ontario over the past several years; and given our rapidly aging population there is every reason to believe our health care resources will only come under increasing strain in the future. While the cost of maintaining a single patient like Mr. Rasouli is barely a drop in the bucket of Ontario health care expenditures, the fact is that health care resources in Canada are communal resources. It may be time that we all started to think more like a community about how those resources are used.
One thing all these stories have in common is that they all provide catalysts for conversation. These are conversations that must take place – both at the societal level about practices like assisted suicide and use of communal health care resources, and at the individual and familial level about the kind of death we want or don’t want for ourselves.