How doctors really decide who lives and who dies

Should doctors allow their expertise to trump patient's personal goals — or should they yield to it?

MATT MCCARTHY: When I graduated from residency training, I had finished four years in medical school, three years of internal medicine residency, and three years of subspecialty training in infectious diseases. I took a job as a staff physician at a hospital in Manhattan. And it was a teaching hospital. And I suddenly found myself surrounded by every morning on rounds medical students, interns, residents, a pharmacist, a social worker, all of these people who are turning to me to make medical decisions, which I felt reasonably comfortable with.

But it was a patient who I met who challenged me with an ethical issue that made me recognize how out of my own depth I was at handling these things. And that patient was a 24-year-old woman. I'll call her Sarah. And she had end stage anorexia nervosa. And she weighed 35--she was 24 years old, and she weighed 35 kilograms. She was the size of a fifth grader. And her heart was barely pumping, and her electrolytes were a mess. And there were all of these issues that were essentially just on the verge of death. And when I went to see her with my medical team, she said to me,"I have just one request. I would like a palliative care consult. I want you to help me die."

And as I was standing before her, I said, "No, no, no. There's a lot of things we can do for you. But that's not one of them. We're going to get you through this." In fact, that's a phrase that I say to a lot of patients-- we're going to get you through this. And as I was saying these words, I felt the glare of the medical students and residents around me. And I recognized I wasn't being my best self, my best doctor self that I had dreamed of being. It just didn't feel right that I was telling this woman, "No." And I ended up reaching out to our ethics committee. And that started a long and winding process of me getting involved in medical ethics where I learned just how many ethical issues doctors were facing. And it led to a clinical research career where what I study now are the ethical issues doctors face where they don't ask for help or they don't ask for an ethicist.

Part of that is because our health care system right now prizes efficiency. And itis often inefficient to say, time out, we need to talk to a clinical ethicist and make the right decision. ButI've come to recognize how important that can be. When you join the world of medical ethics, you learn about a whole new vocabulary of terms that were never exposed to medical students like me, things like beneficence and non-maleficence and autonomy and justice. And they're very theoretical and airy concepts. And the challenge of being an ethicist is to bring those concepts into clinical practice. And so the first thing you do, if you're going to be a medical ethicist, when you're called in for a case, when I goto see an ethics consultation, is you figure out, what are the facts. And there is a saying in our hospital that good facts make for good ethics.

And often that is the big stumbling point. Doctors may be disagreeing about something or a patient and a doctor or disagreeing, and that leads to an ethics consultation. And in a third of the cases at least, we find out that there is a fundamental disagreement on the facts of the case. The other thing that's very helpful to know are legal precedents. So a hypothetical would be a 12-year-old boy needs surgery for a tumor in his liver, and he's going to require a blood transfusion during that surgery. But his parents are Jehovah's Witnesses. And they say, "No blood transfusion!" And the surgeon says, "I'm not taking this kid to the ER unless I can transfuse him because he'll die on the table." And that prompts an ethics consultation. And that's the kind of case that I would have to adjudicate. It turns out there is a very clear legal precedent with something like this, which is that,as Justice Potter said a long time ago, Supreme Court Justice, said that you, as an adult, can be a martyr for your cause. But you can't make your kid a martyr.

So sometimes the ethical issue becomes established via legal precedent. But sometimes doctors say to me, I'm not looking for the legal answer.I'm looking for the ethical answer. What is right here? And what's interesting about medical ethics is that everyone brings something different to the table. I am an Irish Catholic guy from Florida. I've got my own unique perspective on things. And I will sit next to a philosopher on the ethics committee. And then that person will be next to somebody from the clergy who's next to a neurologist, who's next to a nurse. And what we're trying to figure out is what is consistent with the patient's goals and interests, not what I think is the right answer.

And it takes a little while to come to that place. And in fact,some people say that Western medicine is making a mistake by giving patients so much autonomy. I use the example of the patient with breast cancer who's refusing chemotherapy. And I've talked with colleagues from other parts of the world who would say this patient shouldn't be given an option. If it's treatable, you should treat them. You should cure them and that, in fact, the whole idea of an ethics committee has sprouted from Western medicines prioritizing autonomy and that it's a mistaken belief that we should allow joint decisions with patients and that doctors went to medical school for a reason and they are the informed one in the room and they should tell patients what is right.

I disagree with that approach, but there is certainly a case to be made that we're not on equal footing 50/50 and that joint decision making can in some cases lead to bad decisions. Now the question is, what's a bad decision. If it's consistent with someone's goals, then that's a good decision. But that's where the ethics community likes to have a lot of enthusiastic discussions.

  • Our health care system right now prizes efficiency, rather than embedding an ethics committee throughout a patient's treatment.
  • The challenge of being a medical ethicist is bringing "airy" concepts into clinical practice.
  • Sometimes the solutions to ethical issues become established via legal precedent.

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