Who’s In Your Wallet?
In 1975 my husband, Mike, and I went backpacking in the Truchas Mountains in northern New Mexico. I was newly pregnant with our daughter and had just taught my first bioethics course at a local university. When we came “down from the mountain,” Mike went to his doctor to see about a sore knee. The verdict: rheumatoid arthritis. The future we imagined that day forty-one years ago was starkly different from how things turned out.
I spent the next thirty years as a bioethicist specializing in advance care planning, hospital ethics committees, and health care decision-making. When a kindergarten teacher asked our five-year-old to tell about her family, she shrugged: “My Mom does death and dying.”
When a kindergarten teacher asked our five-year-old to tell about her family, she shrugged: “My Mom does death and dying.”
Mike and I no longer hiked. Instead, our family embarked on a thirty-five-year journey with a debilitating chronic illness.
What I have learned: the best advance care planning occurs when we ask someone, early on, to be our health care companion.
This is not a hard sell. Young people especially will complete a wallet card, or use an app on their phone to record the name and contact information of a health care companion.
What should we discuss with our health care companion? Early on, with every hospital admission for repeated surgeries on his athletic six-foot-four frame, Mike would face end-of-life medical questions like, “Would you want to be on a ventilator? A feeding tube? Antibiotics? What about DNR?”
Mike always answered, “It depends.”
Aware that medical choices depend on personal values, I used our frustration with these narrow and dire medical questions to create a new kind of advance directive: the Values History Form.
When we ask you to imagine serious and terminal illness (your own or that of loved ones); to list what you do and do not want if you are close to death; to tell others who matter most to you what you are thinking and feeling about incapacity, dementia, dying and death . . . I can imagine some of you muttering: Couldn’t I just have a root canal?
What should we discuss with our health care companion? “Would you want to be on a ventilator? A feeding tube? Antibiotics? What about DNR?”
Even more difficult is asking our children and grandchildren what their wishes are. We really do not want to imagine serious illness or the death of the young people in our lives.
Because of such reluctance, we fast-forward through the majority of health care decisions throughout our lives, decisions that have nothing to do with end of life.
There is a better way. Start early, say, when you get a driver’s license, turn 18 or 21 (or, when you leave home, join the military or go away to college, enter into a long term relationship, have a baby, get a diagnosis of a chronic condition, prepare for surgery). Name a health care companion, and talk about your current health care wishes.
As younger people engage a health care companion we will grow a generation that makes good health care decisions—adults who, when faced with serious or end-of-life situations, will not struggle to develop this capacity for the first time.
—By Joan McIver Gibson ’65
October 12, 2016