Rasouli case: 'End of life' often really means 'ending life.'

While going through my emails I came across this excellent article that was written by Tom Koch, a bio-ethicist and gerontologist in Toronto. This article was published in the Toronto Star on December 15, 2012 under the title: 'End of life' often really means 'ending life.'

Koch examines the Rasouli case based on its similarities to the issues within the Carter case in BC and the Leblanc case in Quebec. The Carter case and the Leblanc case seek to legalize assisted suicide and euthanasia in Canada.

The Euthanasia Prevention Coalition (EPC) had intervenor standing in the Rasouli case at the Supreme Court of Canada and has intervenor standing in the Carter case at the BC Court of Appeal and the Leblanc case at the lower court in Quebec.

'End of life' often really means 'ending life'

Tom Koch

Tom Koch, Toronto Star - December 15, 2012

Hassan Rasouli lies in a bed, his family by his side, as machines assure his bodily functions and the Canadian Supreme Court decides his future. Should Sunnybrook Hospital physicians be given the right to discontinue his respirator or should his family’s wishes for his continued care take priority?

The Rasouli case is the flip side of one heard last summer in B.C. Supreme Court where Gloria Taylor, a woman with Lou Gehrig’s disease (ALS), successfully sued for the right to physician-assisted termination at a moment of her choosing. Taylor later died of an infection while her case was on appeal. Taylor wanted to control her death while the Rasouli family wants to control their father and husband’s continued life.

What the court decides in Rasouli’s case will give us insight into its thinking when the case of Ginette LeBlanc — another woman with ALS seeking physician-assisted termination — is heard in the Quebec Supreme Court next March.

There are two very different positions in all these cases, each defined by the language used by proponents. In thinking about what these cases mean, and how we should address them, it’s the language that tells the tale. Here is a sample of the oppositions that stand for either continued life or termination at a moment of either a person or a doctor’s choosing.

The 2012 Royal Society Expert Panel Report on End of Life Decision Making, for example, talked about “physician-assisted death” while I talk about “physician-assisted or directed termination.” The first describes a passive, morally neutral role by physicians who accept death’s inevitability and take as their mission helping persons to meet it without fuss.

The second is a bare, active description. In providing drugs that stop the heart, in discontinuing life support we do not “assist” but wilfully terminate a life that is ongoing. Maybe we are right to do this, maybe not.

At the very least, we need to know the difference.

The Royal Society’s experts also talked about “end of life decision-making.” So, too, do most popular writers. But none of these cases are about “end of life” and its final choices. The issue is ending a life that is ongoing.

Hassan Rasouli

With continued support, Hassan Rasouli, 61, could continue for years. So, too, would LeBlanc, whose ALS is not “terminal” in any short-term sense of the word. So we are talking about people at the “end of life” only to the degree they are terminated prematurely.

The physicians who seek the court’s permission to terminate Rasouli’s care over the objection of his family insist his condition is “futile.” By this they mean they cannot do anything to improve his condition. And there they are correct. But the family insists the effort it takes to keep him alive is not “futile” because his life has value and care buys him time to recover on his own. “The treatment is 100-per-cent effective,” a family spokesman reported. “It permits him to breathe.”

In arguing for discontinuing life support, the physicians imply that where respiration is mechanized and brain function is at best minimal, there is no life.

But as Rasouli’s advocates said in court — and as others have insisted in other cases — we are unclear about the science of these things. Studies in the 1990s of patients diagnosed as being in a “persistent vegetative state” found many to be, in fact, at least minimally conscious. A few were “locked in,” unable to communicate but very much aware. And we also have “coma miracles” in which persons long believed dead to the world awoke for reasons nobody understands.

That is why some people use “persistently unconscious” rather than “vegetative” in describing such cases The former suggests the potential for an improvement the latter denies.

Beneath this discussion runs the bottom line, not of care and caring, of life and how we value it, but money. Some reporters — and physicians — have suggested the issue is one of triage, of the best use of health-care dollars and equipment in a period of scarcity. But what is right, what we should do in medicine and as a society, is not about cost efficiencies. If we believe it is important, we find the monies for what we need.

We can afford to maintain the occasional citizen whose family insists — even if only on the basis of faith — a restricted life is still a worthy life. The question isn’t money, in other words, but our willingness to spend on the fragile life.

Finally, there is the irksome issue of “autonomy” and choice. For 40 years or more, medical ethics has focused upon the idea of patient autonomy and the right to patient choice. Where the patient is unable it is the “surrogate,” usually a family member, who gets to make the call on care or its cessation.

In this case, that idea is challenged by physicians who seek to trump the choice of the patient’s surrogates who include, by the way, a physician. So do we advocate patient autonomy and choice only when it is cost efficient and convenient? Or is the patient’s right of choice inviolate, even when the attending doctors disagree?

There is a problem of consistency here. If we are to grant people like Gloria Taylor or Ginette LeBlanc a right to termination, doesn’t that mean we must grant to the Rasoulis the right to choose continuance?

The heart of the issue is this: Is there ever an “unworthy life”? Or, as the Rasouli family insists, is life worth preserving even in a fragile, limited state? Here members of the so-called disability community weigh in on the potential of life in restricted states. “We know,” they say, “what you do not. The life you see as insupportable is to us our life and worthy after all.”

Tom Koch is a bioethicist and gerontologist. His latest book is Thieves of Virtue: When Bioethics Stole Medicine.