Human Exceptionalism

Whose Life Is It Anyway?

Bioethics pushed personal autonomy to the forefront of medical decision making, helping forge the legal right to say no to unwanted life-extending care. Today, if a person doesn’t want to be in an ICU or to be otherwise kept alive with medical treatment, the patient or family can say no.  And that’s generally a very good thing. Indeed, without the right to say no, the hospice movement would never have materialized.

But what about patients who want to say yes to such care? Increasingly, patient autonomy is becoming a one-way street. If you want to die, fine. That decision is sacrosanct. If you want to live, well doctors and bioethicists get to make the final decision. This is sometimes called Futile Care Theory or medical futility.

Futile Care Theory is as much about money as it is about benefiting the patient. It is also about honoring the subjective views of doctors and care givers–even at the expense of rejecting a patient’s specific request for efficacious treatment, that is, treatment that would or could achieve the desired medical result of extending the patient’s life.

Now, in Canada (yet again), we see a case in which a patient stated he wanted to be kept alive but the doctors don’t want to comply. From the Toronto Star story:

Joaquim Silva Rodrigues wants to live. It’s what the 73-year-old Catholic man repeatedly told his family he wanted after he was diagnosed with a rare disease called progressive supranuclear palsy two years ago. It’s what his wife and son have demanded on his behalf from his physicians at Sunnybrook Health Sciences Centre where he lies today, motionless and speechless. On May 14, they placed a note in Rodrigues’s medical chart saying he has “no reasonable hope of recovery or improvement” and that they have decided to withhold mechanical ventilation in the event of a medical emergency requiring life-saving treatment.

That change in status was made unilaterally, without the consent of his family.

The physicians’ point is that Rodrigues has a life not worth living:

Last July, Rodrigues was admitted to Sunnybrook and moved into the ICU in August. Since then, he’s had to be placed on medical ventilation three times, Dr. Andre Amaral testified. There won’t be a fourth, he and his colleagues have decided. “He has no chances of recovery,” Amaral told the panel. “There’s no clear benefit in prolonging life when you cannot tell whether the life that’s being prolonged is actually worth living for. . . . We’re prolonging life for suffering and pain.”

Dr. Keith Rose, Sunnybrook’s chief medical executive, said the number of high-profile physician/patient conflicts at his hospital reflects the sheer volume of critical care cases it receives as one of Canada’s largest trauma centres. “Nobody goes out to try and make families angry, to create confrontation,” he said, adding that the hospital administration supports the decision of its doctors in the Rodrigues case. “The final decision-making, after all steps have been gone through and discussions with the family, then, if it’s in the best interest of the patient, it is the physician’s decision to make.”

But he said that this was a life he considered worth continuing.

I disagree with Rodrigues’ decision. If it were me, I’d reject the ICU. But who cares what I think? It isn’t my life that’s being decided about.

Nor should it be the doctors’ choice, since this kind of decision deals with subjective personal values. In other words, the treatment is to be withheld because it will or could work, not because it won’t.  Thus, the doctors are really saying that the patient’s life–as opposed to the treatment–is futile.

Hard cases make bad law. It will be a very worrying thing–particularly in an age of cost containment and potential conflicts of interest thereby created–if doctors and/or bioethicists are given the final legal say about whose life is worth living. I can’t think of a more certain way to destroy trust in the healthcare system.

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