Part 1 of 3 by Larry Beresford

When I set out to do my own advance directive, I obtained the standard documents from the organization that pioneered the living will back in 1967. I also sought out and obtained the California Natural Death Act Declaration form, my HMO’s advance directive package and the “Five Wishes” document. Then I made a date with my partner, Rose, who I was planning to marry.

We met at a North Beach coffeehouse to sit and talk about my feelings about medical care at the end of my life. Rose, who had come straight from her special education classroom in the neighborhood, wanted to know why these kinds of treatment decisions should be so fraught for people, although I assured her that in the chaos of the ICU, they often were. But in the end, she said she could be a tenacious advocate for my values. I had seen her temper and I knew how determined she could be when she thought it was important.

The next morning, I kept an appointment with my HMO primary care physician. We talked about my father’s recent, seven-week stay in a Kansas hospital for complications from cancer surgery. Like the six wise men of Hindustan who went to meet the elephant, none of his multiple physician specialists, each in charge of a different internal organ, had been able to speak for his overall medical state or propose a sensible care plan for my father as a person.

After a long course of treatment that felt fruitless to our family, he chose to go home with hospice care for the final 36 hours of his life. My doctor said in cases such as his, there is a need for a strong general internist to step in, negotiate between the specialists and advocate for the patient’s wishes, which she tries to do for her patients. She asked me to send her a copy of my completed advance directive and we both agreed that I should get more exercise and lose some weight.

I also spoke with some experts around the country and reviewed the 1998 public opinion poll, “The Quest to Die with Dignity,” by American Health Decisions, which documented that Americans believed it was important to plan for the end of life but were reluctant to actually do so. 

The experts I spoke with agreed that the living will, which is more of a laundry list of desired or unwanted treatments, was less useful than the Durable Power of Attorney (DPOA) for health care decisions, which empowers someone else to speak for me at the moment of truth. They also said the formality of completing a legal form was less important than the process of considering, clarifying and talking about my values. The larger conversation should happen with loved ones multiple times over months and years.
Bud Hammes, director of medical humanities at Gunderson Lutheran Medical Center in La Crosse, WI, suggested to me that the process could greatly benefit from a professional guide. But I thought that might be easier to find in La Crosse, which had become the advance care planning capital of the world. He also said it’s important to list what you would want in such situations, not just what you don’t want, for instance, a religious rite or a mechanism for family members to express their love and concern. I pictured a Cajun accordion trio playing mournful ballads at my bedside as my respirator was turned off.

In the end I went for the DPOA and named Rose as my agent, but it still felt incomplete. So I decided to write an addendum which will be featured in Completing my own Advance Directive—and Living to Tell the Tale Part 2 of 3 by Larry Beresford.  (Scheduled to be featured Wednesday March 9, 2011)

Please consider sharing your experience to help the public understand the importance of advance care planning.