Thursday, May 1, 2008

The Ethics of Withholding Information

I just finished reading David Rieff's book about the passing of his mother Susan Sontag. The book is called Swimming in a Sea of Death: A Son's Memoir. The thing that mostly stuck out to me, all he way through the book, was Susan Sontag's refusal to accept her own death. Rieff calls her a lover of life and says she always had a fear of death. But she goes so far as to not even admit death is imminent when it is reasonable and healthy to do so.

Sontag is diagnosed with MDS, a particularly vicious form of leukemia. Her odds of surviving are very low—1 in 1,000 or less. The first doctor she sees tells her some patients with MDS are candidates for bone-marrow transplants, but she is not one. Instead of accepting this diagnosis, or getting a second opinion, Sontag searches and searches until she finds an expert who is willing to tell her that she has a chance to live ... one who will do the bone-marrow transplant. The process is terribly painful, and terribly expensive, and to no one's surprise, it fails.

So, she goes through an awful procedure at discomfort to herself and family and at great cost to her family, others on her same insurance plan, others at the same hospital, taxpayers who support the state hospital she was at, etc. To the end of the book, Rieff wonders whether he did the right thing, enabling his mother's desire for hope above all, never forcing her to look at her mortality. And he is never able to answer that question. I can't help but think she could have had a better death if she had accepted her terminal illness and focused on saying goodbye. Sontag was so convinced that she was going to beat the odds, even though she had MDS, she made no plans for her own burial.

My new poll for May is related to this topic. Would you want to know everything about your disease if you had a potentially terminal condition? Do you think it's right for doctor's to give a patient false hope? Hope is one thing ... but what if there is no hope to be had? In Two Weeks of Life, Eleanor Clift describes a moment where her doctor simply told her and her husband that it was time to move on to hospice care, meaning, death was fewer than six months away, time to accept it and prepare for it. Why couldn't Susan Sontag have made a similar move? Or am I out of line? Do people have the right to pursue any medical treatment they want to pursue until the moment the die?

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