This article posted in three installments earlier this week at the website of National Healthcare Decisions Day, a collaborative initiative to inform Americans about the opportunity to communicate and document their healthcare decisions.
When I set out to do my own advance directive, I obtained several standard documents, including my HMO’s advance directive package, the "Five Wishes" document, and the California Natural Death Act Declaration form from the California Medical Association. 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 -- an attached advisory outlining my values as best I could express them and what would be most important to me regarding medical treatments and decision-making. Reading it 13 years later, I can see the influence of my experience in hospice care, both as a writer and a patient care volunteer. I still feel the same way about these issues, so I can’t say the experience of planning for my death was a waste of time. Here are my nine values as I wrote them in 1998:
1) To know the fullest and most complete truth about my medical condition and prospects.
2) To have an opportunity to find peace, understanding and closure at the end of life.
3) To receive all reasonable and appropriate comfort care measures when I am terminally ill, and to be kept clean, dry and warm.
4) To NOT be maintained on ventilators or other physically invasive therapies unless they offered a reasonable chance of restoring me to a better state of health and functioning.
5) To not be a severe, prolonged caregiving burden to my wife or family. If I become so, I would want them to consider alternative placement.
6) Otherwise, I would like to be at home to the greatest extent feasible during a life-threatening illness.
7) If I lose the ability to communicate or interact with and to recognize my loved ones (such as from advanced Alzheimer’s disease), I would not want medical measures to prolong my life, even antibiotics. But in the meantime, I would like full comfort measures and to be housed in a comfortable nursing facility with a rich activities program.
8) I do not believe in and would not want euthanasia or assisted suicide, unless my suffering was obvious, extreme, relentless, long-lasting and untreatable. In that case, I would appeal to my family’s best judgment.
9) Most of all, I want everyone involved in my care to be as honest and realistic and reasonable as they can be.
What instigated me to begin this journey of advance care planning at a young age and prior to personally experiencing serious illness?
In 1997, I was asked by an editor at the Washington Post Health Section to review several new books about hospice care, the subject of my specialization as a freelance newsletter editor. When I finished, I proposed another article: to undertake and to describe my own process of advance care planning to complete an advance directive, either a living will or DPOA for health care decisions.
I would try to imagine and spell out what kinds of medical treatments I might want or not want in some future crisis when I was incapacitated and no longer able to express my preferences. Mostly, I wanted to see how difficult it would be -- whether it was something ordinary people could do without discomfort.
The whole process felt unnatural and uncomfortable, like a role-play exercise at a company training seminar. From the vantage of middle age and good health, trying to visualize and then discuss some undefined, distant future crisis just felt stiff. I couldn’t figure out how to bring the process to life until I decided to write the addendum, outlining my values as best I could express them and what would be most important to me regarding medical treatments and decision-making.
I completed my advance directive and then filed the article. But my editor promptly decamped for Paris. His replacement found it unconvincing and it never saw the light of day... until now. So my hope is that highlighting my process will show that it is possible to complete an advance directive and live to tell the tale, and perhaps remind others with an interest in care at the end of life that they should bring that interest down to the personal level and do their own. For themselves and those they love.
But I learned a few things about advance care planning along the way. I learned that a living will containing a laundry list of wanted and unwanted treatments for some distant future crisis is less useful than thinking about underlying values and then communicating them to someone who could represent them through a DPOA. I think a professional guide to the process could be a lot of help; otherwise, don’t feel surprised if it feels a little formal and stiff and unnatural.