We've Been Here Before

Care in extremis continues to be a challenge, especially when good people disagree about the patient's best interest. Two current cases that highlight the problem have come to my attention.

The first is this case from Florida. A woman has been between the hospital and a nursing home since suffering a stroke in December. Her husband believes that she is not aware and will not recover, and that she wouldn't want to live this way. He thinks her feeding tube should be removed. The patient's mother, however, believes the patient is aware and can recover (or at least recover enough). She wants the feeding tube retained. One good thing is that so far husband and mother-in-law are still cordial. A court has appointed an attorney for the patient, but so far no other third parties are involved. (Of course, it's only been a few months, and this is Florida....)

The second case is from Winnipeg. An 84 year old gentleman has been in intensive care and on life support since October. The patient is an Orthodox Jew, and his family feels everything must be done. Physicians feel care is futile. In fact, one doctor feels so strongly that he has resigned - and not just from the case, but from the hospital.

The case has gone to court, although a trial date has not been set. The hospital is coping with the loss of one intensivist, but worrying that there may be more resignations, forcing closure of the ICU. Staff feel continuing care is cruel, and want the case resolved as soon as possible. The family feels faith requires continuing care, and want the trial delayed, at least past the High Holy Days, to be sure representatives of their Orthodox community can participate.

It the Florida case sounds all too familiar, you're not alone. There are enough parallels to the Terry Schiavo case to catch everyone's attention. Although the case hasn’t gone on nearly as long, it is another case in which the patient’s husband and the patient’s parent differ in their beliefs about the patient’s awareness, prognosis, and wishes. There are also parallels between the Winnipeg case and the Schiavo case, if different ones. As in the Schiavo case, there is significant difference between the diagnosis and prognosis presented by physicians, and the family’s assessment and prognosis. In addition, the patient’s religious faith, and appropriate medical care in light of the patient’s faith, are central issues shaping the family’s decisions. And, as in the Schiavo case, this is in the courts.

I don’t raise the similarity with the Schiavo case as if to say, “See, these cases are popping up all over.” I think the fact that they’re news is in fact evidence that they’re not common, largely because in most circumstances the professionals and families can come to consensus about what the patient would wish. Neither to I want to suggest that somehow the notoriety of the Schiavo case would have brought massive change. It did result, at least in my area, in a lot of new Health Care Directives and Durable Powers of Attorney for Health Care; but I didn’t expect any single case to result in radical change in the culture.

I raise it because they do have common themes that need continued and constant attention. We could even articulate those themes again in the categories of the Georgetown Mantra.

Autonomy: Who knows what the patient would want, and can best speak for the patient who can’t speak for himself or herself? Who is the most appropriate surrogate?

Beneficence: What is in the patient’s best interest? Who is best able to determine the patient’s best interest?

Non-maleficence: Is there a point beyond which aggressive care is harmful to the patient, whether to the patient’s physical integrity, or to the patient’s dignity? Are there circumstances in which aggressive care results in harm?

Justice: How does this affect others (by, in this instance, the risk - perhaps small, but real - that an ICU would have to be closed)? What is appropriate participation from the wider community (such as the courts, or the faith community)? What respect is due to the moral integrity of providers, whether professionals or institutions?

The most important circumstance shared by this Florida case, the Winnipeg case, and the Schiavo case, is their complexity. All these cases, however simple and straightforward each might seem from one party’s perspective, in fact become complex as those parties and interests interact. It remains difficult to reach resolution; and more difficult, if not impossible, to reach reconciliation.

And in the meantime, while many speak for them and about them, the patients remain....