TO THE EDITOR:
The essay by Hansot [1] and the article by Gilligan and Raffin [2] address, at a most visceral level, the emotional issues of death in an intensive care unit and the pain and sense of helplessness that physicians, patients, and families experience when communication fails. I empathize with the frustration of everyone involved. However, might Dr. Hansot have been too quick to invoke her mother's advance directive?
The decision that a patient's condition is terminal is often an evolutionary process. Ms. Hansot's physician, to meet his obligation to provide optimum care, needed to give a patient with a fresh cerebrovascular accident a period of intensive support to establish prognosis. Was the physician convinced, at the outset, that there was little or no hope of meaningful recovery? Probably not. Is even a 5% chance of good improvement worth a 5-day wait before an irrevocable decision? I think it is. Furthermore, I have seen patients and families change their minds about advance directives; the definition of "meaningful recovery" can change when the alternative is death. I believe that care must be structured so that it permits the patient and family to consider their situation and the alternatives. It is unfortunate that the attending pulmonologist could not effectively communicate to Dr. Hansot the rationale behind his conservative approach. I regret that Gilligan and Raffin underemphasized the obligation of the physician to help the patient and family make a clear-headed, unhurried decision. This is our responsibility as well, and it is different from simply heeding an advance directive.
I was disheartened by the "-isms" of this discussion: ageism, sexism, and (implied) elitism. These polarizing words make communication harder. They offend those of us who try to do a good job and stay open minded. The pulmonologist should never have raised the ageism issue; Gilligan and Raffin's conjectures about the sexism and the elitism of the medical establishment are unhelpful. Communication is based on establishing common ground and achieving common goals, in this case the appropriate care of the patient. Rather than speculation on the societal and political underpinnings of this sad clash of wills, I would have preferred constructive advice from Gilligan and Raffin on resolving adversarial situations in the intensive care unit.
Dr. Hansot's implied criticism of the physicians for not being present at her mother's extubation surprised me. Given her unhappy experience, I would have thought her grateful to not have the physicians present. Even with a positive interaction, the death of a patient is personal and family time; I say my goodbyes and leave everyone in peace. Ultimately I am an interloper, a guide, a foreigner who should leave and let family, God, and nature take their courses.
I reject Gilligan and Raffin's image of a medical technocracy indifferent to the needs of dying patients, more interested in vital-sign scorecards than compassionate care and patient autonomy. The tragedy of this case is that highly educated, caring persons with a common goal of doing right by Ms. Hansot couldn't figure out how to talk to each other. Communication and trust among the participants dissolved and could not be reconstituted in time for the patient to benefit fully from the interest and compassion of all concerned. My question to the authors is this: How do we prevent repetitions of this scenario?