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Hassan Rasouli, who is in vegetative state at Sunnybrook Hospital, Toronto Dec. 6 2012. (Fernando Morales/The Globe and Mail)
Hassan Rasouli, who is in vegetative state at Sunnybrook Hospital, Toronto Dec. 6 2012. (Fernando Morales/The Globe and Mail)

End of life

Rasouli case shows need to be pro-active about treatment Add to ...

As learned and wise as the Supreme Court justices may be, you don’t want them deciding how and when you die. How you die, like how you live, should be your choice, with very few exceptions.

That is the key message the general public should retain from the tragic situation of Hassan Rasouli, whose case is being heard by the court Monday: If you want choice about your end-of-life treatment, then you have to articulate your wishes ahead of time, and in no uncertain terms.

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If you want to avoid the indignity of having your loved ones fighting with doctors about whether it is appropriate to “pull the plug” (a crude term for discontinuing life support), then you need to be pro-active.

Prepare a living will 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.

Mr. Rasouli’s case actually revolves around a fairly narrow legal point: Do physicians require consent before discontinuing treatment, if they determine that treatment is pointless?

Thankfully, in the real world, that question does not arise often and the disputes, when they occur, rarely have to be decided in the legal arena, let alone by the country’s top court.

The reality is that most people, when facing decisions about end-of-life care, are entirely reasonable, serene even. Palliative care wards are not depressing places – quite the contrary.

Given a choice, and the ability to articulate that choice, most of us would opt for a “good death” – pain relief and other forms of palliation – rather than a prolonged state of suffering. And most family members, when they realize that care has become futile, are relieved when a physician recommends that treatment be discontinued, especially when good palliative care is available.

All of us will die. So how do we ensure that are wishes are respected? The best approach is a living will – which is not a legal term but a lay expression to describe advance care directives.

Legislation in each province is slightly different but, essentially, you can state your wishes in a legal document and give a power of attorney to a loved one to make decisions for you at end of life if you are incapable of doing so.

You can, for example, state the desire that, when you are terminally ill, you have a “do not resuscitate” order, which means if your heart stops, health professionals will not make efforts to restart it. Or you can state that if you are in a vegetative state without reasonable hope of recovery, life support should be discontinued.

These decisions are made every single day in hospitals, long-term care facilities, nursing homes and hospices. Disagreements between family caregivers and professional health-care providers are the exception, not the rule. But having legal documents can help avoid some ugly unnecessary battles.

The real difficulty comes when treatment is deemed hopeless but the family (or the care directive) insists that care should never be discontinued, as in the Rasouli case. This position is often rooted in religious beliefs.

Should care continue if it’s futile? Probably not, as prolonging the suffering of a patient is poor medicine, and unethical.

But when there is no agreement, who should have the ultimate say? The family? The physician? An independent arbiter?

Currently, in practice, physicians tend to have the final say though all health-care facilities now have ethicists, chaplains and the like on-site to negotiate compromises. In Ontario, where Mr. Rasouli is being treated, families can also appeal to the Consent and Capacity Board, that acts as a neutral decision-maker when there is a stalemate. While that is actual a wonderful system, it has the aura of a “death panel.”

Picking who can best articulate the end-of-life wishes of someone who is incapable of speaking for themselves – family, physician or board – is ultimately what the Supreme Court must decide.

Nobody wants that task and, in the ideal world, no one should have to play the role of substitute decision-maker without prior direction. And no one will have to if everyone states their end-of-life wishes clearly and unambiguously beforehand.

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