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What provinces need to learn from the top court's end-of-life ruling

The daughter of Hassan Rasouli, who is in vegetative state at Sunnybrook Hospital in Toronto, holds her father’s hand in a photo from Dec. 6, 2012.

Fernando Morales/The Globe and Mail

The Supreme Court of Canada decision about the fate of Hassan Rasouli – a man who has been on life support for three years and whose family insists the treatment continue – has been interpreted in many ways: As a victory for families, as a blow to physician autonomy, as a rebuke to bureaucrats who want to 'unplug' ailing patients, and as a slapdown for supporters of euthanasia.

But it's not really any of those things. It is, above all, a victory for due process and a clear message to individuals and governments that they should get their legal houses in order.

The court did not rule on the age-old philosophical question of who has the ultimate say on treatment (or non-treatment) decisions – the patient/family or the physician. The learned justices did not discuss assisted-death because the issue here was discontinuation of treatment.

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The court did not say anything either about resource implications – whether one has to balance keeping one man alive at great expense with the possibility that others will be denied treatment as a result – nor did it make any reference to the constitutional right to right "life, liberty and security of the person" and how that affects provision of health care.

Those key issues will no doubt be decided later, in other cases.

The Rasouli case was essentially about one thing: When there is a disagreement about continuing or discontinuing life support, who gets to settle the dispute?

The answer to that question is not the physician nor is it the family, and it's not the courts. (Though that was the view of dissenting judges in the 5-2 decision.)

That unenviable task falls to a neutral third party, in this case the Consent and Capacity Board, an independent body that was created by Ontario legislation in 1996. (About half the provinces have similar boards with different names. The lesson the other provinces should take from the ruling is they had better start drafting legislation now or these end-of-life cases are going to be decided by the courts, at great expense.)

The CCB is a little-known body that conducts hearings under the the Health Care Consent Act (the legislation at the heart of the Supreme Court case) as well as the Mental Health Act, the Personal Health Information Protection Act, the Substitute Decisions Act and the Mandatory Blood Testing Act. Board members are psychiatrists, lawyers and members of the general public.

The Board holds hearings on the most heart-wrenching cases imaginable and, for the most part, they do so with the wisdom of Solomon. More than 80 per cent of cases involve patients with severe, untreated mental illness who don't want to be hospitalized or who refuse medication, and the board has to determine whether they have the capacity to make rational decisions. Increasingly, the board is also being called upon to make similar rulings on patients with dementia, especially when there are disagreements within families on the proper course of treatment – namely should a parent be institutionalized or not.

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Now all eyes will turn to the CCB as it makes a life-or-death ruling on Mr. Rasouli. (Unless the hospital and family reach an amicable agreement.) What's unfortunate is that the CCB will now be labeled a "death panel" by opponents of the legislation. It is nothing of the sort.

As an aside, Sunnybrook Health Sciences Centre, where Mr. Rasouli is a patient, should be immensely relieved that it "lost" the case. Can you imagine the media circus had journalists been waiting around for the patient to be "unplugged." (To use the crude term for discontinuing life support.)

But, to be clear, there is not really a loser in the case.

The reality is the dispute should have been resolved long ago by the Consent and Capacity Board. There, Mr. Rasouli's spouse, Dr. Parichehr Salasel, would have had a fair hearing and so too would have the two Sunnybrook physicians central to the case, Dr. Brian Cuthbertson and Dr. Gordon Rubenfeld.

The reason it ended up in court is largely a technicality. The physicians challenged the jurisdiction of the CCB, arguing that withdrawing treatment was not, in a legal sense, treatment, so the board did not have jurisdiction.

The Supreme Court dismissed that argument out-of-hand, saying that treatment, non-treatment and withdrawal of treatment are all part of the same package.

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Modern medicine can do amazing things to keep patients alive, even those like Mr. Rasouli, who have no realistic hope of improvement. It's gotten to the point where defining "death" is getting difficult, especially in a strictly legal sense.

The good news is that cases like this one are very rare. Most patients and families, when faced with the facts, will make sensible, rational decisions on whether care should continue or be withdrawn. And let's not forget that, in the vast majority of cases, patients, family members and their health professionals will be in complete agreement, and everything possible is done to make end-of-life care comforting and humane.

The last thing anyone needs at end-of-life is a legal battle – whether it's at the Capacity and Consent Board or in court. It's undignified.

The unstated but essential message from the Supreme Court ruling though is that these cases can and should be avoided.

If you want choice about your end-of-life treatment – and who doesn't? – then you have to articulate your wishes ahead of time, and in no uncertain terms.

Prepare a living will, draft advance care directives and, while you are still compos mentis, have "the talk" with those who will be overseeing your care, including spouses, family members and, ideally, physicians.

In other words, give your consent while you have the capacity to do so. That is ultimately the best way to exercise choice at end-of-life.

André Picard is The Globe's health columnist.

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