Medical ethics, patient autonomy, and futile care

A while back the New England Journal of Medicine carried an excellent editorial by Dr. Robert Truog, a highly-respected medical ethicist at Harvard. It is about futility of care. Recently I had occasion to read it again, and it’s still an excellent summary of the issues.

In it he describes a situation in which parents of an 18-month-old boy with a rapidly progressive, fatal neurological problem disagreed with the doctors over what to do. In his editorial, Dr. Truog examines the various ethical aspects of futile medical care: pain and suffering, patient (and family) autonomy, and healthcare costs. I recommend the essay to anybody interested in these issues, especially after all the talk of “death panels” last year during the healthcare debate.

Most experienced pediatric intensivists, myself included, have encountered situations in which we, the doctors, believe continuing to support a child is unethical because it is not saving the life but prolonging the dying, whereas the child’s parents believe the opposite—that it is unethical to withdraw life support because all life is sacred, no matter the circumstances. Sometimes these situations arise because poor communication causes families to distrust the doctors. But sometimes both sides understand each other clearly, but still disagree profoundly about the proper thing to do. What happens then?

Doctors often make the argument that we should not prolong suffering. Establishing if a patient is actually in pain can be difficult, and anyway we virtually always have the means to relieve pain in these situations. More telling to me is the argument that families cannot compel physicians to act unethically, and most of us regard futile care as unethical. Yet even then the physician can simply withdraw from the case, although from experience I can tell you it is difficult to find another physician to take on cases like this, and abandoning our patient without finding them another physician is clearly unethical (and illegal).

What to do? I have been involved in several cases like the one Dr. Truog describes. Thankfully, in all but one the family and the doctors were ultimately able to reach an understanding both sides accepted. In the one case in which we could not agree, nature ultimately decided things for us, as she often does.

Stories like these remind me that the pediatric intensive care unit is a place where, if we pay attention, we can learn a great deal both about life and about ourselves.