Malignant: Medical Ethicists Confront Cancer

I've just read Malignant: Medical Ethicists Confront Cancer, edited by Rebecca Dresser. Seven ethicists who have either had cancer themselves (5) or cared for a spouse with cancer (2), or both (1), write about their experience and discuss what that experience might mean for ethics and clinical care. It's a very approachable book. I think most readers of this blog would find it powerful.

Here are some of the main lessons I gleaned from the book:

1. Not surprisingly, direct experience deepens our understanding of the issues we teach about in the classroom and write about on blogs and in print. The deepening isn't conceptual knowledge. It's more that the experience acts as a filter, indicating what's truly important in what we've thought and where we've been naive or callous. In my ethics seminar section at Harvard Medical School we regularly work with cases. I've taken to "becoming" the patient in the case, and interacting with the class in that role. I've found that taking on the persona of the patient - even when that persona is very different, as when I play a teen age female - the role comes alive for me in feelings and perceptions. I become a better teacher for it. If the students learn half as much as I do from those exchanges, the class is a success.
2. Norman Fost describes a remarkable experience. Being worked up for what seemed clearly to be a recurrent kidney stone the resident evaluating him ordered a CT scan. Fost explained to the resident why he thought the scan was (a) medically not called for and therefore (b) an wasteful expenditure. But he didn't refuse it. The scan confirmed what he knew - he had yet another kidney stone. But it also showed a mass, which on further exploration turned out to be an early, and apparently curable, kidney cancer. Kidney cancers are often found too late for cure. Fost believes the CT scan may have saved his life. But he holds to the view that it was wrong to order it and that it reflects an overly interventionist, inadequately cost attentive, US medical culture.
3. Rebecca Dresser and Dan Brock write about decisions they made that in retrospect (a) went against their values and (b) about which they wish their physicians had discussed/argued with them. Dresser's example is especially telling. She refused a feeding tube and was close to death when a nurse talked her into changing her mind. Dresser and Brock speculate that physicians may have learned the lesson of respecting patients' decisions too well! Rather than challenging bad decisions - decisions that go against the patient's values, they too readily acquiesced. In terms of "Four Models of the Physician-Patient Relationship," a valuable paper  by Linda and Zeke Emanuel from twenty years ago, their physicians applied the "informative" model - provided information and then, in effect, followed the patient's "orders," when the reflective give-and-take of the "deliberative" model would have been more useful.
4. Arthur Frank sees cancer support groups as potentially hugely valuable for patients, but he warns that these groups and what he calls the "survivorship industry" can thrust identities that don't fit onto patients. His comments helped me understand something I observed several times in my clinical practice. Patients who had experienced a loss, and who by all appearances were going through painful, but "healthy" grief, were frightened by the fact that they weren't crying more. They had imbibed the view that "proper" grief involved lots of tears and feared that they were full of unshed tears that would act like a poison. Explaining that there wasn't a single "correct" way to experience grief reassured them.
5. Finally, and with most personal impact for me, John Robertson and Leon Kass write in painfully raw terms about accompanying their wives on their journeys with ovarian cancer. Robertson's wife Carlota Smith died. Kass's wife has experienced recurrences, but is still in treatment. I hope that if my wife encounters a similar experience I will respond with the commitment, care, and courage that Robertson and Kass displayed.

There's lots more than I've written about to glean from this moving book!