Recovery from Stroke, Medical Ethics, and Hope

Recent articles in the New York Times and Boston Globe guided me to an important, rather technical article in the journal Stroke - "Treadmill Exercise Activates Subcortical Neural Networks and Improves Walking After Stroke." (The article itself isn't yet available on the web.)

Researchers in Baltimore tested the effect of treadmill exercise on patients whose ability to walk had been impaired for several years by a stroke. Stroke victims are commonly told not to expect further improvement after a year of rehabilitation efforts. In the Baltimore study six months of three times a week treadmill exercise led to substantial improvement in walking. And, most suggestively, functional MRI studies showed improvements in underlying brain function.

Over the years several patients in my psychiatry practice who had experienced strokes had been told that they had reached maximum post-stroke improvement. I told them not to believe it. I explained that while I had no expertise in the neurology of stroke, we know the brain is a clever organ, and it simply didn't make sense to me to assume that we could be sure that its functioning could not improve further. Over the years some patients improved. Some didn't.

The underlying clinical and ethical issue is how to deal with uncertainty. All physicians have seen patients and families who suffer from refusing to give up. They expend endless time, effort, emotion, and money in a futile attempt to change something that is not going to change. The most helpful thing in this situation is to help them accept the sad reality, grieve, and ultimately move on.

Physicians are rightly concerned about encouraging pathological forms of false hope. But it is often possible to help people get to more complex attitudes. The situation is bad and may not get better. That calls for grief and the best adaptation we are capable of. But physicians aren't omniscient. Perhaps things will go better than we expect. We want to be open to that possibility, and - within reason - do what we can to promote it.

Combining grief about what has happened, acceptance of reality and adaptation to it, and hope for positive change, is a complex but achievable state. Being able to help patients and families get to this point depends a lot on the skill and temperament of the clinician. But the organizational setting has a role as well.

When I joined the practice of the Harvard Community Health Plan HMO in 1975 I was asked to develop an outpatient program for patients with chronic mental illness. I reviewed the research literature and concluded that a group-based program would be the most promising design. But the insurance benefit set a 20 visit limit for mental health services.

The HMO (a) tweaked the benefit to remove limits for the continuing care group, (b) found a room that could accommodate a group that would have different numbers of attendees each week, and (c) made a coffee machine available. The flexible structure made it easier to deal with the ambiguities of health and human destiny. For years the continuing care group was reliably in the same place at the same time. Patients know they could be there as needed. If they had better things to do with their time that was fine. If they hit a bump they could return. If regular contact served them best, we could offer it.

It's not uncommon for health organizations to force a binary choice on patients and clinicians - either the patient is "sick" and in active treatment or "well" and on his own. Wisely, the HMO didn't do that. In retrospect I am proud of the way I worked with the many patients who used the continuing care program. But I'm equally impressed with the way the HMO made it possible to do the work.