For ten years, as teaching assistant for a doctor friend’s course on Current Topics in Medicine, I helped students think about and discuss end-of-life decision making and write an advance directive. I gave my “significant other” the same materials the students used (articles, forms) and asked him to do the assignment too. It took him two years to execute a healthcare proxy form. Then I pushed him to tell me what he wanted me to do with the authority he was giving me to act for him if he couldn’t make his wishes known, and he said, “If I can’t read the New York Times, I don’t want to live.” Of course that wasn’t good enough. I made him complete a checklist. He never wrote the paper the students had to write, but he did elaborate on the situations in which he would prefer to refuse or withdraw medical intervention. Four years ago, a couple of days before Thanksgiving, he had a stroke in his house on Nantucket island and lay, unconscious, for 26 hours before somebody found him on the kitchen floor and rushed him to Nantucket Cottage Hospital. I flew from Boston to Nantucket on Thanksgiving Day 2004 and sat at his bedside until he died the following day. The CAT scans showed such irreversible brain damage that he was unlikely ever to regain cognitive function, even if he emerged from the coma. Had he lived, I would have had to carry out his wishes and withdraw fluids and nutrition so that he could die in peace. He died before I had to make that decision, which would have been the hardest thing I had ever done in my life. As it is, it was important for us to have had the conversations we had about what we considered acceptable intervention and acceptable quality of life. Also, because we were not married, I would not automatically have had the right to be the go-to person at the hospital, had I not had the healthcare proxy form with his signature on it. Now that he’s gone, my own healthcare proxy, naming him as the person to make medical decisions for me, is null and void. I wrote another one, giving my attorney the power to act on my behalf, but it is really only a temporary solution. There is nobody else in my life to whom I am close enough, and whom I trust enough to carry out my wishes. All I know is that I would not want to leave that power to anyone in my immediate family or to a doctor. Having a serious conversation about possible end-of-life situations (chronic and/or terminal illness, crippling accident, heart attack or stroke, extreme old age) and options for medical intervention is one of the most important things an adult can do. I’m not sure Thanksgiving is the right time to do it, though. Sometimes the person best able to act on your behalf is not your spouse or sibling or parent or child but a trusted friend or partner, whose personal choices and emotional involvement will not deflect him or her from doing what you want.
-Jacqueline, 11/26/2008
