"You have just one more decision to make," the young hospice doctor was saying. He had already taken me through the requirements and responsibilities of the decision-maker in the program. My mother met the criteria for the patient: she didn't appear to have more than three months to live; and I accepted the principles of hospice care -- no resuscitation or other extreme measures, only palliative treatment. She would die at home.
The "one more decision" was whether or not to authorize him to prescribe antibiotics if she contracted pneumonia, a common occurrence at the end of life. "Antibiotics will probably cure the pneumonia," he said, "until the next time." I opted for no antibiotics.
I am not sure how my mother would have voted on that one. Throughout her life she had gone to any extreme to save the life of an animal and talked about wanting the same for herself. But the health proxy, I found only by accident in her desk drawer, left the choice to me.
We had never discussed her wishes. She was so full of life and physically healthy that I suspect we shared a kind of magical thinking -- she would go on forever, and talking about death would break the spell. Now that I am thinking about health proxies and last wishes for myself, I realize that my mind slips off the topic beyond a defiant "I want to be able to manage my own death."
Clearly I need to have The Conversation with myself even before having it with my children. They have already made it clear that they don't want to go there, especially since their parents are much older than their friends'; of course, if logic rather than emotions were in charge, that would be a very good reason to sit down and talk. But, where to begin?
The answer is The Conversation Project, co-founded by my friend the journalist Ellen Goodman. It is a website that offers everything from opening gambits for all ages and relationships, to detailed checklists of the many small decisions to be made, to guidelines for broaching the Conversation with the patient's physician, who is often as reluctant to explore the inevitable as the family is.
The Starter Kit, developed by a team of compassionate experts and offered on the site, is a supportive, unthreatening, and detailed workbook for all of us. One example that got my attention was a five-point scale to rate your end-of-life wishes between "I want to live as long as possible" to "Quality of life is more important to me than quantity." There are also personal stories which, as personal stories always do, help you learn from the experiences of others.
Since the site was launched on August 16, there have been over 20,000 hits and an astonishing 8,000 requests for the Starter Kit. Clearly this is a conversation we all need to have with those we love and who love us. The difference between what each individual would consider having a "good death" and a "hard death," Ellen tells us in a short video on the site, can be an honest conversation.
Check out the video below for more on The Conversation Project? with co-founder Ellen Goodman.