During the course of my career as a child neurologist and faculty member of the Johns Hopkins Berman Bioethics Institute, I have developed a familiarity with the various moral philosophies: Utilitarian, Aristotelian, Kantian, but have found that they rarely enter my thinking or language as I make difficult clinical decisions at the bedside. They seem much like the field of biochemistry, useful as background, but rarely of use at the bedside. I am clearly a Utilitarian clinician striving to produce the greatest good for the greatest number, but that number is always constrained to the individual family and child at hand. The patient’s “good” clearly always has primacy, but I am also concerned about the family and about society’s investment in a single individual. Should I be? Here are some cases and conundrums that

As I encourage a family to allow a minor operation to repair the back of their child with spina bifida who will never walk independently, whether I advocate for or against the operation, I worry that I am being too directive by the language I use and the tone of my voice . Should my discussion be more neutral or more paternalistic? Is survival of a severely handicapped child always a blessing? Will that child’s longer term survival truly increase the “greatest happiness for the greatest number”?

Ethical theory does not help my decision-making. If I struggle with these issues, how can a family, inexperienced in these many subtleties, make an informed decision? Never-the-less, they must decide, and I must ratify their decision. Should parents even consider society’s good as they ponder these decisions? Similarly, as families of patients in a persistent vegetative state request that “everything be done,” should cost to society be considered? I worry about my role in these decisions. What will provide the greatest happiness for the greatest number? What will be the costs to society? That is my Utilitarian side. I do not use it in reaching my decisions, but it is back there, pushing me in one direction - or another. It does not alter my commitment to the child, but nags at my conscience.

The Ezekials [5] offer four models of the physician-patient relationship:

• The paternalistic model in which the physician acts as the patient’s guardian, articulating what is best for the patient;

• The informative model in which there is no role for the physician’s values and he (or she) s only to provide “the facts”;

• The interpretive model in which the physician elucidates the patient’s values and helps the patient realize these values; and

• The deliberative model in which the physician engages the patient in a discussion of what decision would be best. They provide a case of a young woman with breast cancer and discuss the decision to do a mastectomy or a lumpectomy, each with or without chemotherapy and irradiation.

With Best Regards,
Alice Maria
Editorial Coordinator,
Journal of Clinical Research and Bioethics
E-mail: bioethics@eclinicalsci.com  

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