The Supreme Court of Canada heard the case of Toronto patient Hassan Rasouli Monday, which centres on the complex and often deeply painful issue of who should decide end-of-life care. With an aging demographic, increased life expectancy and ever more sophisticated technological interventions, these kinds of cases will almost certainly become more frequent. This is a welcome chance for the country’s highest court to clarify how end-of-life treatment should proceed when a physician and a patient’s family disagree.
For too long, Canada has lacked clear and consistent guidelines. Decisions about end-of-life care, though they take place in healthcare settings, are not simply medical. A patient’s values and beliefs will help shape the goals of their treatment. The patient (or their surrogate) must have a say in the process. At the same time, a patient’s family should not be able to demand life-sustaining treatment in every situation, even if it is futile and could, in fact, be cruel.
Only Ontario has any mechanism in place to resolve disputes between physicians and families, a body called the Consent and Capacity Board. But this board was not specifically designed to deal with this issue, and its members may lack the expertise to properly determine what a physician’s standard of care means when it comes to continuing treatment of a patient on life support. The court has a chance to recommend how such a body should be revamped to function more effectively, and to put guidelines in place for other provinces. “This is an issue across the country and a painfully corrosive one,” notes Jocelyn Downie, the Canada Research Chair in health law and policy and a professor at Dalhousie University.
Mr. Rasouli was diagnosed as being in a persistent vegetative state, after complications from surgery for a brain tumour in Oct. 2010 at Toronto’s Sunnybrook Health Sciences Centre. Since then, the retired engineer has required round-the-clock care, including a ventilator, machines to feed and hydrate him, and medications to maintain his blood pressure. His two critical-care physicians – Dr. Brian Cuthbertson and Dr. Gordon Rubenfeld – believe he will never regain any degree of consciousness and want to stop feeding and hyrdation, begin palliative care, and allow him to die.
However, his wife disagrees, believing his condition is improving and that some movements he makes are purposeful. This difference of opinion prompted the doctors to launch the current legal action. They believe they are not required to go to Consent and Capacity Board because there is no medical benefit to the patient in this case, so the standard of care cannot require this treatment.
Clearly, neither a patient’s designated decision-maker nor a doctor should have unilateral power over life and death. While Mr. Rasouli’s doctors believe there is no medical benefit to providing ongoing mechanical interventions for him, bioethicists argue that this is a value judgment. The medical benefit is clear: Mr. Rasouli is still alive. The underlying, essential question may be: Is that a worthwhile benefit?
In addressing this, the court must balance the interests of the patient against those of society, and consider as well the issue of resources in a public healthcare system. “The allocation of scarce resources is a moral issue,” says Prof. Downie. “It is one that we as a society must grapple with, and we should do so in a manner that is transparent and for which decision-makers should be held accountable. Otherwise we risk unfairness and discrimination.”
Of course, most people would not want to be kept alive in a hospital on chronic ventilation, and most families would not want to cling to a life that has been so horrifically reduced. Usually a patient’s family, and the attending physician, resolve differences over end-of-life care decisions, making Mr. Rasouli’s case highly unusual.
Critics of the Consent and Capacity Board rightly point out that it was set up to address the health concerns of the mentally ill, not the dying. It is most often concerned with cases that look at someone’s mental ability to give or refuse consent for treatment. One-third of the board’s members are lawyers; one-third psychiatrists; and the rest are members of the public. The views, advice and experience of physicians who work in critical-care medicine, palliative care and other related specialties would add another layer of expertise and sound judgment to the board. Here, the court has a chance to offer clear policy guidance.
Not long ago, Mr. Rasouli’s condition changed. He can now make a “thumb’s-up” gesture in response to requests and has been rediagnosed as minimally conscious. This raises the possibility he has some awareness, although initial tests show he is not “locked in”, a condition where a person cannot move or speak but is conscious of what is going on around them. Still, the changed diagnosis could influence the decision about his care; it serves to underscores the need for there to be a better way to resolve differences than through costly litigation, which only adds to the trauma and pain for the family.