Tuesday, March 27, 2007

Talking about Dying

Tough Question to Answer, Tough Answer to Hear - New York Times:

While I'm poking about in the Science Times archive, I came upon a particularly impressive piece, also on doctor patient communication, at the end of life. It was published shortly before I began this blog, and I'm happy to have recovered it for use here. I also plan to use this Jane Brody column in my future teaching. Here are some excerpts:

Patients use information about the expected course of their illness, including how long they are likely to survive, in a variety of ways. It can help them decide whether to take a long-awaited trip, which therapies are worth pursuing, what kind of support system they may need as their condition worsens, and how much time they will have to put their affairs in order.

Patients often have things they want to accomplish before they die, and knowing that their time is short may prompt them to attend to such matters. Receiving a terminal prognosis may also open up conversations about death and dying that may be painful at first but can bring considerable relief to patients and family members alike....

Prognosis is helpful, not just for patients, but also for their families, who may need to know, for instance, how much time they may have to take off from work, whether they should arrange for an extended leave, what might be involved in caring for a dying person at home and whether other arrangements should be explored. A common fear among doctors is that providing a terminal prognosis will strip patients of hope. Indeed, it will dash hopes of long-term survival. But the doctor can convey other sources of hope. For example, patients may be relieved to learn that they will remain well enough to attend an important family event, or that palliative care is available for distressing symptoms like pain, nausea and shortness of breath....

Most important, patients say, is for doctors to stay with them until the end. Fear of abandonment (some terminally ill patients are in fact abandoned by their doctors) is extremely common. Doctors see themselves as healers, trained to cure or ameliorate illness, and typically view the impending death of a patient as a personal failure. Rather than face failure, they abandon the patient.

I started thinking about these issues decades ago, in my classwork with Dr. Jay Katz at Yale Law School. His masterpiece on informed consent, The Silent World of Doctor and Patient, contains a powerful chapter on abandonment of dying patients, still well worth reading. Katz, a psychiatrist and training psychoanalyst, provides special insight into why physicians have so much difficulty coping with and remaining connected to their dying patients. He also makes brilliant use of Tolstoy's magnificent Death of Ivan Ilich to bring the point home.

My own father is now living in an assisted care facility, some years into Alzheimer's Disease. We just signed him up for supportive care with hospice. The issues have become more than theoretical in the life of our family.

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