Knowing When (or Not) to Let Go

On the date and in the hospital where I was born 58 years ago, my friend was allowed to die. It’s what he had said he would want, it’s what the doctors said was occurring, and it’s what his family courageously and compassionately allowed.

My friend didn’t want the catastrophic stroke that had left his brain so badly and inaccessibly damaged. He didn’t want to die and leave his two daughters fatherless. But in the event of a catastrophic event, he didn’t want to exist unable to think, speak, or care for himself. And this was known because he had told another friend and a brother, who were able to communicate his wish when he was unable to, and in so doing helped others in my friend’s family to allow his passing, and not prolong it indefinitely and artificially.

I followed this story from the East Coast as it evolved in Southern California, and so I don’t have any real sense of the truth of decision-making after my friend’s sudden collapse and emergent bleak prognosis.

The timing was striking, not for the simple coincidence of his dying on my birthday, but because my work with Community Voices in Medical Ethics had me following the case of Hassan Rasouli in Ontario, Canada. 

Rasouli, 61, has been on life support since Fall 2010, and for much of that time he has been under the care of a medical team in dispute with his wife and adult children over whether to continue keeping him alive. (More here)

The medical team believes it should make the decision on whether to discontinue life support, even if the patient’s surrogates disagree, and is attempting to have a court establish that as legal fact. 

The day after my friend died, lawyers for both the medical team and the Rasouli family made their case before the Canadian Supreme Court, which will rule in a case with potential legal ramifications from the UK to the US. Cases concerning end-of-life medical care rarely make it this far in a legal system, because the patient rarely survives till the court date.

Which is a point the Rasoulis’ lawyer underlined with the Supreme Court in disputing that care is futile. “The treatment is 100 per cent effective,” the lawyer said. “It permits him to breathe.”

Lawyers for the hospital made this point: “The purpose of critical care medicine, including life-support measures, is to support the patient long enough to allow recovery from a reversible illness. Where, as in Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose.”

So who decides? In determining my friend’s fate, religion played a role in allowing him to be removed from mechanical life support. He was Roman Catholic, and as such would have considered human life sacred. The Rasoulis, devout Shia Muslim, no doubt would agree with that. And yet one man was removed from life support, the other remains on it. 

Community Voices, through its Community Ethics Committee, is just now concluding a lengthy study of medical futility, a phrase much simpler than all it is meant to imply. A determination of medical futility -- usually by the medical team, though sometimes by a terminal patient (who, for example, is ready to give up on chemo before the oncologist) -- usually results in agreement on revised goals of care. In the rare cases, though, there is not agreement. And then, who ought to decide?

This question is being asked all over the world, and is especially volatile now in the United Kingdom, where the hospice-inspired Liverpool Care Pathway for the Dying Patient is the focus of heavy scrutiny.

Given what I know of my friend’s death, what I’m learning about the Rasouli case and the controversy over the LCP, I found a blog written by Philip Berry to be illuminating. Berry is a writer and National Health Service consultant.

Berry wrote: “We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.”

Berry explores four questions in particular: Do doctors vary in their practice according to religiosity? Is such variety acceptable? If not, should doctors have to disclose their beliefs to patients? And, should doctors disclose their beliefs in public debate on end of life issues?

He cites a poll finding non-religious doctors “40 percent more likely to sedate than religious doctors” and religious doctors less likely to “discuss end-of-life treatment option with their patients.”

“Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised,” Berry writes. “Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation.”

Later, he adds: “If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy.”

Berry is a proponent of the LCP and more generally quality care for the dying. He is also an atheist, which doesn’t stop him either from noting that “Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity” or crediting the palliative movement’s role in making “the UK's reputation for the care of dying patients ... unsurpassed.”

As Community Voices tries to sort through questions of medical futility and possible ways to resolve the intractable disputes, our running joke is that our endeavor is itself an exercise in futility. But, of course, it’s not a joke, as I was reminded when my friend, as he had said he’d want, was allowed to die.