DEATH & DATA
WHY WE NEED THE FACTS ON ASSISTED DYING IN CANADA
Last year, Canadians heard news about the sad case of a Quebec man with a neurodegenerative disease who was stable and getting the medical support he needed in hospital until he was transferred, against his will, to another facility that was ill-equipped to care for him. Suffering, and after futile attempts to get the help he needed, he requested and received Medical Assistance in Dying ( MAiD), now legal in Canada.
Last month, an Orthodox Jewish long-term care home went public with its complaint against Vancouver physician Dr. Ellen Wiebe, who slipped in and administered MAiD to a resident there, at the family’s request, despite having no medical privileges there and against the home’s policy prohibiting it.
Then, on Jan. 31, the Ontario Divisional Court ruled that even physicians who consciously object to MAiD must make “an effective” referral if patients so wish.
Estimates are that more than 3,000 people have accessed MAiD i n Canada. In December, the federal government announced it would establish national reporting standards for MAiD. As one prominent journalist put it, “… an idea that was once impossible to imagine is becoming normalized.”
But in these anecdotes lie hints that the 2015 Supreme Court decision, Carter, which opened the legal door to medically assisted suicide, has not settled the matter once and for all, as some might assume. What may be settled from a legal perspective is most emphatically not so in the real world. Setting aside the moral positions at both ends of the spectrum of opinion, there is a fundamental difference between legal reasoning and clinical judgment. What may seem clear to lawyers is not clear to those who have to execute the law.
The Supreme Court decision, issued in the particular format reserved for decisions emphasizing the unanimity of opinion, stated that assisted death was legal: “… for a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition ( including illness, disease or disability that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” (Italics added.)
To a lawyer, that probably seems clear. However, clinicians will tell you that each of the words I have italicized is ambiguous, subjective, context-dependent and likely constantly changing. How do we define competence? Ought we to expect different degrees of competence depending on the consequence of the decision? What is consent, and how do we determine that someone has capacity to give consent? The fact is there is little data, and no consensus on how to assess capacity in the face of intolerable suffering. (Consider your ability to make a complex important decision moments after you’ve broken your leg, or discovered the sudden death of a loved one.)
What is grievous, and in these days of medical advance, how sure are we that something is irremediable? What makes an illness, or disease or disability more than a variant of normal? How do we characterize suffering? Is it pain? Lack of care? Loneliness? Poverty? Ennui? Loss of function, and if so what function? What do we mean by intolerable? What do we mean by individual? Is it the person sequestered by the anatomic limits of their skin, or in another view of autonomy, as part of an interconnected world? Each and every one of these questions needs an answer in every instance where the law is applied. That is the clinical reality.
Bill C-14, which gave legislative effect to Carter, recognized this. It also takes into account that MAiD is new territory medically, socially and legally, and that there is little experiential data on which to rely. The legislation is to be reviewed after five years. C-14 mandated expert collection of evidence into three circumstances not currently permitted: mental illness, mature minors and the use of advance directives. The Council of Canadian Academies, the umbrella organization for Canada’s most distinguished scholars, has been charged with that task, to be completed by the end of this year.
We are at the global cutting edge of an important social policy. Less than two per cent of the industrialized world has access to legalized, active ending of life on medical grounds. More countries have declined to legislate than have been permissive.
To date we have only anecdotes. We read of cases where a life was ended in ways that would satisfy all but those most morally opposed. We read of cases where a withdrawal of services, or suboptimal management, or economic concern was the driver, and that makes many uncomfortable. And we hear of cases, such as that of the young woman who wanted to die out of despair for a lost relationship, which most would abhor. These anecdotes are very important. They give us guidance about what questions to ask, and how to ask them. Collecting and understanding that data takes time. To shortchange the learning is to abrogate our moral and legislative responsibility.
This is why the national reporting system is vital. However, we must ask the right questions. We can’t content ourselves with process data: whether the required steps were fully met, the forms completed, the boxes checked and the requisite authorities duly informed. The temptation will be to settle for this, because it is easy and politically safer. We need data that builds a deep understanding of the root cause of each request, and how that cause was addressed. As of now, we know nothing about that.
The active ending of life is a consequential innovation, but unlike most adverse drug effects, the mistakes cannot be reversed. That is why the type and quality of data collection must be even more rigorous and deliberate than for a new drug or medical device. MAiD is meant to be a last-resort option. Canadians will only come to some confidence in its application if there is clear, transparent understanding of why its use may, in some circumstances, be appropriate. To borrow from the words of that journalist, do we really understand what we are “normalizing”? Until we do, it is folly to litigate or legislate on presupposition when such essential knowledge is lacking.