Problems with Medical Ethics: Recruiting

On September 13, 1848, a work crew was blasting rock for a railroad in Cavendish, Vermont. An accident with the explosives caused a long iron bar, more than an inch in diameter, to fly upwards, through the cheek and then through the top of the skull of one of the workers. There it lodged. Every medical student is told the worker’s story because it is one of the key events in how we have come to understand the brain. (Phineas P. Gage did not die from this huge bar through his brain. But those who knew him said that he wasn’t his usual self either. It was our first revelation that certain areas of the brain had specific functions.) This accident was important precisely because it was such a rare event, and made clear some aspect of the way our brain works.

So it’s logical that people in the medical ethics field should be interested in those unusual circumstances that can be used to point out key points about important questions. The focus of the field of medical ethics has generally been on bizarre combinations of circumstances that invoke debate on interesting and important issues.

Yet one of the problems with recruiting from a shallow pool is that all of the applicants tend to look the same. We tend to recruit people that look just like the people already there. Just like us. It’s human nature.

Who are the people who set the medical ethics agenda? Who picks the topics discussed at national conferences? Who writes the policies at you local hospital, where you and your loved ones might have your care guided—maybe even constrained—by the invisible hand of hospital policy?

The good news is that the people I’ve met who work in the field are nearly all smart, thoughtful, caring people who are genuinely interested in exploring areas of medicine and medical decisions that are new and complex. I’m really glad that there are these people to bring out into the open air some of the issues related to nanotechnology, fertility treatment, gene therapy, and organ transplantation. I’m glad that if the decision ever presented itself, there would be intelligent experts who could help me decide whether or not a plug should be pulled.

As the field has become more essential for the increasing complexities of modern medicine, the job of ethicist has become, naturally enough, more professional. Most of the prolific writers of published papers in the field do it as their full-time job. For most of the others in the field, it’s an important part of their role in the institutions that employ them. Usually those institutions are universities, medical schools, and big academic hospitals. So it’s easy to understand that the problems they deal with are the problems they see.

Big teaching hospitals associated with medical schools are usually what we call tertiary care centers. Not primary care or secondary care, but what comes after that. When you see your pediatrician, for example, that’s primary care. That doctor might send you to a local specialist. But the specialist might send you to a sub-specialist at a tertiary care facility who’s an expert in just your exotic problem.

Thought leaders in the medical ethics field are sequestered like Rapunzel from the issues that working doctors face every day, again and again. Chances are overwhelming that your local hospital ethics committee doesn’t have a single physician in primary care. Ethics issues in primary care are almost never studied or written about.

The problem of ethics in primary care is related to the shallow pool. Though I have the greatest intellectual respect for those in the field, they don’t do what I do. Heck, they don’t even really know what I do. Only about once a year do I have a patient in the intensive care unit at the local tertiary-care hospital. True, I’m happy there’s an ethics committee on-site to provide some structure to difficult family decisions. But this insight does little for me in my day to day work. I work outside of an institution, not in a hospital or university.

In pediatrics in particular, ethics problems pervade everything we do. None of this was ever brought up in my training, curiously enough. A fundamental principle of ethics is autonomy. A patient, ultimately, should get to decide what’s best. In pediatrics, that almost never happens.

As a pediatrician, almost all my care is directed by somebody who isn’t the patient. The principle of autonomy is routinely ignored. Should it be? I’ve never seen this problem discussed by leading ethicists. Who is it that gives consent for kids to get medication? Indeed, who is it that has to bribe/trick/convince/cajole or force the kids to take the medication against their will? In the visit described in my post, A Mistake, we held a kid down, screaming, in order to take out a splinter. Was it ethical? What about vaccinations that I try very hard to convince parents to make the children get. Nobody wants shots!

If there ever is some kind of health care reform in this country, we will need primary care physicians to provide guidance for the allocation of resources. This will affect everybody, not just the Phineas Gages of the moment.

Here’s how I sometimes think of the field of medical ethics. Imagine if almost the entire field of geology only studied diamonds. Fascinating, rare, important, diamonds. Everyone would be interested in the topic. Yet we would know little about the rock under our feet.