Many hospital patients and their families don't realize that at every hospital, in addition to all the advanced drugs and technical procedures, there's also a group of people-doctors and others-who spend a great deal of time focusing on the personal, human and moral issues of medicine-an ethics committee. Members of this committee help work through the many troubling medical issues that can arise.
To find out more about the work of these committees and explore other doctor-patient ethical issues, we spoke with Abraham Verghese, MD, a preeminent figure in medical ethics and head of the University of Texas Health Science Center at San Antonio's humanities and ethics curriculum.
Who is on a hospital's medical ethics committee, and what can they do for patients and families? Membership varies from place to place, but it's not only doctors. There also may be a lawyer, a chaplain, a nurse and a nonmedical professional from the community. Special training isn't required, but all of these participants will have expressed an interest in medical ethics and patients' rights. At most large hospitals, one member will carry a beeper, on a rotating basis, in case there's a need for an ethics consultation.
Sometimes hospital staffers themselves want to consult the ethics committee-for example, if a recommendation by the hospital's oncology team to aggressively treat an end-stage cancer patient doesn't sit well with the patient's primary care team. But often, family members disagree about treatment issues, which may trigger an ethics committee consultation.
What would a typical family scenario be? Unexpected end-of-life decisions are the most common. The medical system is not equipped to make such judgments in acute emergencies. It will deliver the maximum care even if that's not what the patient would have wanted.
That's why planning ahead by creating advance directives, such as a living will or a durable power of attorney for health care, is so important, Many people say the idea of remaining on a breathing machine is repugnant to them. But, having said that, most people don't have the proper documentation in place to prevent that scenario.
Here's a typical dilemma: A patient has had a massive stroke and is now on a ventilator in the ICU. The patient's prognosis is grim. Most of the time, the family will agree to remove the ventilator and discontinue treatment, other than that which makes the patient comfortable. But oftentimes, one or more family members disagree. They think their mother is going to get better. Or maybe an adult child doesn't trust his father's second wife to make this kind of decision.
If there's any such conflict, especially in this type of critical situation, the ethics committee will be called in to hear all sides and then make a recommendation to the health-care team.
But ethics issues aren't only about dying or incompetent patients, are they? You're right-and it's important for us as doctors to recognize our boundaries. For a long time, medicine tended to be very paternalistic. Doctors acted as though they alone knew what was in the best interest of their patients.
That era is gone. Today, it's an era of patient autonomy. For example, if you're a mentally competent adult and your belief system does not allow you to have a needed blood transfusion, you won't receive a transfusion.
How do you teach your medical students to handle such difficult ethical situations? We put students in simulated scenarios, walk them through real case histories and let them wrestle through to a solution. Real personal exposure helps, too.
Example: We illustrate the concept of patient autonomy-the right to make one's own decisions-by telling them the story of Dax Cowart, who, at age 26 in 1973, was horribly burned and lost his sight and the use of his hands in a propane explosion in west Texas. On his way to the hospital and then many times over the course of many very painful treatments, he articulated clearly that he didn't, in fact, want treatment-he just wanted to be allowed to die.
In 1974,Daxbecame the subject of a landmark video, Please Let Me Die, in which he questions what it means to be an American if a citizen is unable to halt unwanted medical treatment. We show our students the video and, after the after the lights come on, Dax himself is standing there to discuss his experience.
One of the things students always ask is, 'Aren't you glad that you came through all this, and didn't the physicians do the right thing?" And he tells them that they don't understand-even though he's married now and a lawyer he still wishes that he'd been allowed to die. He should have been the one to decide. A mentally competent patient should have the autonomy to make informed decisions about his medical care.
Many medical consumers are fed up with the impersonality of the health-care system. How do you advise med students and doctors in their everyday work? It's true that the American public has become disenchanted with physicians' attitudes. It's a great paradox because, on the one hand, we've never had more technology an d a greater ability to cure than we have today. Yet the popularity of healers who use spiritual and other non-scientific remedies is growing because they deal with aspects of healing that we doctors seem to ignore.
We need doctors who will sit with patients, touch them, talk with them. As a doctor, you can't always say that you have the answer, but you can say, "I'm really interested in what has happened to you. I'm going to get to the bottom of this. 'Whatever happens, I'm going to be there with you."
I remember once going to the home of an AIDS patient who was dying. I went out of ignorance, not knowing what else to do. There were no drugs in those days, but I suddenly realized, by the way the family came around me sitting at his bedside, that I was helping the patient and his family come to terms with his death.
That's a mysterious thing but, if you're a smart doctor, you don't fight it or be too self-conscious about it. You just let it happen. If you think about it, that's what the old horse-and-buggy doctors used to do. It just makes sense.
