Stories Matter: The Role of Narrative in Medical Ethics

What effect might a narrative “turn” in ethics have upon health care institutions? While much more work needs to be done to define “narrative ethics,” I am interested in what Hilde Nelson has classified as telling, comparing, and invoking stories; that is, using narrative as part of moral reasoning, rather than merely as illustrative of moral conclusions derived from other methods of reasoning. ¹ Arthur Frank has succinctly characterized narrative reasoning as thinking with stories rather than thinking about stories. ² Regarding what narrative ethics is not, I shall adopt the blanket term principlist to refer to the most popular, non-narrative ways we have to approach medical-ethical decision-making today. Rita Charon, for one, has suggested that principlist and narrative ethics are ultimately complementary rather than competing. ³ I would prefer to keep open the prospect that principlist ethics will be shown someday to have irreducibly narrative roots. But we need not resolve this question here.

Narrative ethics may have a profound impact on health care institutions, making them much more democratic. To illustrate how this can be, I suggest that we focus on a case study reported recently by John Lantos, even though space prevents its being presented here with the degree of narrative depth and richness that this new way of approaching bioethics seems to demand:

A 9-year-old girl has AIDS with chronic lung and kidney disease. She now requires total parenteral nutrition through a central line and will probably need dialysis within a year if she does not die sooner from other AIDS complications. The patient’s mother also has AIDS and is likely to pre-decease the patient. The patient knows only that she has a chronic disease, and has wondered aloud if she has AIDS; her mother has told her “no.” The mother has told the staff that she would like to tell her daughter the truth but has not done so because her own mother is adamant that the girl not be told. The patient is hospitalized in a large teaching hospital where the multiplicity of consultants and staff make it likely that someone will let the true diagnosis slip out. The physicians feel strongly that it is in the best interests of the child to be told the truth. The grandmother insists, “It is enough for the girl to know that she has kidney disease; why should you tell her that she is going to die [of AIDS]?” ⁴

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