Rasouli, The Supreme Court of Canada and the Elephant in the Room

On the 18th of October the Supreme Court of Canada handed down its decision in the case of Hasan Rasouli. The Court was split 5-2 with Justice McLachlin writing for the majority and Justice Karakatsanis for the dissenters. The facts are that Hasan Rasouli has been on life support in a Toronto hospital since 2010. His physicians (Cuthbertson and Rubenfeld – the appellants in this case) determined that the patient was in a persistent vegetative state, with no prospect of a meaningful recovery. They recommended discontinuation of life support. The physicians further stated that they did not need the consent of the patient (or in this case his substitute decision-maker, his wife, Parichrer Salasel) because, as physicians, they had the authority to determine whether or not any particular treatment was appropriate. It is this issue that has wound its way through two levels of court in Ontario and finally to the Supreme Court of Canada. The case has been presented as about power and authority in health care decision-making. Specifically, the case concerns who has the ultimate authority to decide whether or not life-sustaining treatment should be discontinued, but by extension, also concerns who has the authority to decide on the discontinuation of treatments generally and even more broadly who has the authority to decide who gets what treatment. In Ontario the practices of consent to treatment are governed by the Health Care Consent Act. The basic provisions of that Act are expressly intended to promote patient autonomy. The Act states that there should be no treatment without consent and then lists the processes one should go through if the patient is not capable of consenting him or her self. The Act further creates an agency: The Consent and Capacity Board which has the jurisdiction to adjudicate in certain types of dispute between care-givers and substitute decision-makers. The overall framework for authority in health care decision-making is thus reasonably clear: 1. Patients present with symptoms, 2. The physician or health care team diagnoses and proposes appropriate treatments. 3. The patient, if capable, or substitute decision-maker if not, can then choose from the range of offered options or refuse them all. This is a pretty common-sense view. I the patient know my own body and decide which sort of problem I should take to a health care practitioner (Step 1.) The expert, health-care practitioner (the physician typically) is trained to interpret and understand the symptoms I present and to recommend appropriate treatments. (Step2.) I must then decide if I wish to undertake any of the offered treatments – given my beliefs and values and the significance to me of any side-effects of the treatments. (Step 3.) Ideally, this whole dance is conducted in harmony, each partner moving in step and with agreement. For the most part the ideal is the reality. Patients and physicians typically agree about what can and should be done and work together to achieve the mutually agreed-upon objectives. Authority in health-care decision-making is often irrelevant. If we agree we do not need to worry about who has the authority to make what type of decision. But the underlying authority structure is there. Physicians propose treatments and patients get to choose from amongst, or refuse. In the case of Hasan Rasouli the physicians initiated life support measures (which were agreed to by the family), the physicians then determined that those life sustaining were inappropriate and should be discontinued. The substitute decision-maker disagreed. The physicians said – we do not need your agreement, this decision is within our authority. The substitute-decision-maker then took that issue to court to prevent the physicians from removing life-support without her consent. The Supreme Court of Canada has ruled that the physicians in this case do not have the authority to discontinue life support without the consent of the patient’s substitute decision-maker. So let us unpack this dispute. It was within the physicians’ authority to determine that the initial admission to the Intensive Care Unit (the ICU where the life-sustaining treatment was administered) was warranted. The patient or substitute decision-maker had to consent, but it was within the physician’s realm of expertise and authority to propose such an admission and the course of treatment that was subsequently offered, accepted and administered. So, logically, if the physician has the authority to decide that a particular treatment is warranted by the patient’s medical condition, and is appropriate, then he or she must have the authority to decide that the same treatment is not warranted – or indeed, no longer warranted. No consent would have been required from the patient if the physicians had determined that an ICU admission was not warranted, so, by parity of reasoning no consent is required now that the physicians have decided that the ICU admission is no longer warranted. In the health care literature the word “futile” is often used in this context. The basic argument is that a judgment that a particular treatment or intervention is “futile” or “medically futile” is an expert determination, which falls within the authority of physicians. If “medically futile” means cannot bring about the medical effect for which it is intended then I would support this view. However, the term “futile” is often used to cover far more than this. It is often used to mean not worthwhile, or inappropriate, or inappropriately costly. In Mr. Rasouli’s case continued life-sustaining treatment is “futile” in that there is no real prospect of him returning to any meaningful state of health. So, if the goal of the treatment is to return him to a state where he can interact with his family and have some sort of meaningful recovery, then in the judgment of all of the physicians who have seen him, the treatment is futile, because that is vanishingly unlikely to happen. However, the life-sustaining treatment is not “futile” precisely because it continues to sustain his life. In the Rasouli case this issue was argued using the terminology of “medical benefit.” It was argued that because Mr Rasouli would not gain a “medical benefit” from continued life support, and because “medical benefit” was an expert concept within the authority of physicians to determine, consent was not required to discontinue treatment. It was also argued that the treatment was not only pointless, but positively harmful. The process of caring for Mr Rasouli involves all sorts of unpleasant interventions, which would be warranted if there was a prospect of recovery, but are simply cruel if not such prospect exists. Further, Mr Rasouli faces inevitable physical decline. So, discontinuation of treatment now will prevent future harms later. This argument is more problematic and again brings us back to the issue of authority in decision-making. If we take issues of patient autonomy seriously then we have to accept a patient’s determination of what constitutes a “harm.” An expert physician may be able to tell me about the physical or physiological consequences of a particular course of action or treatment, but I get to decide whether that physical state constitutes a “harm” to me. So, in the best known examples, a physician could tell a practising Jehovah’s Witness that failure to accept a blood-transfusion will result in death, but the patient him or her self decides whether death is a “harm” or less of a “harm” than accepting blood. I would say, in Mr Rasouli’s case, if we take his autonomy seriously, he, or his substitute decision-maker should be entitled to determine if continued physical life – even under the awful conditions experienced by Mr Rasouli, and even without any prospect of a meaningful recovery – is something he would want, and something he is entitled to demand. The Supreme Court of Canada ruled that these arguments (and a variety of others) were unconvincing. Justice McLachlin said that because this situation occurred in Ontario, where these matters are governed by the Health Care Consent Act, the issue turned on statutory interpretation. In the opinion of the majority of members of the Supreme Court of Canada, the Health Care Consent Act had to be interpreted to mean that a withdrawal of life-sustaining treatment should be considered a “treatment.” It therefore requires consent. Furthermore, the Court said, the Health Care Consent Act has created the Consent and Capacity Board (CCB) which has the jurisdiction to rule in some cases of disputes between health care providers and patients and their substitute decision-makers. Before we meet the elephant that has been lurking in the room it is probably worth pointing out that under the Health Care Consent Act the rulings the Consent and Capacity Board (CCB) can make are quite limited. Substitute decision makers, under the legislation, are obliged to make the decisions they have been instructed to make by a previously capable patient. The CCB can be called upon to uphold the wishes of a patient in the event that a substitute decision-maker is not following those instructions. In the case of a dispute about the “best interests” of a patient both the substitute decision-maker and the CCB are required to consider the values of the patient concerned and his or her health context in determining what to do. It is not clear to me how the CCB could determine, in a case like Hasan Rasouli’s how continued life support was not in his “best interests.” Sure, he may not recover with continued life support, but he will die without it. And if continued life is a value to him whatever its quality (which his wife and substitute decision-maker staunchly defends) then I do not see what grounds the CCB could have to overturn that decision. The Elephant Justice McLachlin states in paragraph 4 of the judgment: “The Court’s task is simply to determine what the statute (The Health Care Consent Act) requires. I note that the parties did not address resource implications or Charter issues in this appeal.” This entire case was presented and adjudicated as a dispute between physicians and patients over who had the authority to make a certain type of decision. The real answer is neither – because the wrong question is being asked. The big, important, future-of-health-care-in-Canada question is not: Do physicians or patients have the authority to make this type of decision? (Do the crew or the passengers have the authority to re-arrange the deck chairs on the Titanic?) but rather: Who decides what we are prepared to pay for in Canadian Health Care and how do we make that decision? (How do we avoid the iceberg?) It is estimated that it costs almost a million dollars a year to keep a patient in the ICU. If, for a particular patient, there is no reasonable prospect of a meaningful recovery is that a good use of scarce health-care resources? Who should make that decision – the physician or patient concerned? Neither is a good answer. The CCB – but no the legislation does not permit them to make that type of decision. The Rasouli case and decision has been a much debated, much anticipated sideshow. The real questions concern the type of health care we, as a community, are willing to provide and to pay for. The real challenge is to develop meaningful processes that allow us to grapple honestly with these questions and the consequences of our decisions. If health care resources can be seen as a single pie, any slice given here is a corresponding slice not available to do some good elsewhere. Maybe the Rasouli decision will prompt a re-examination of how we slice the pie. Robert Butcher, October 21st 2013