I am amazed over and over by the term “Death Panel”. I was at a cabin for two weeks with no electricity, newspaper, television or radio and I return to cries of “Death Panel” which seems to be a name for visits to a primary care doctor to discuss end of life issues.
I spoke at a church this summer: the title was “End of Life Issues: Death, Dying and Dementia”. I specialize in Family Practice; I have delivered babies for 18 years and my oldest patient is 104. I love to work with families in life’s transitions: birth, illness, family planning and yes, death.
Everyone dies. Everyone is born. We have prenatal care. Our nation is in continuous discussion about birth: how to make it safe and a welcome and we talk about bonding and reducing premature births. We try to make the gestation healthy; we take vitamins and exercise and see our doctors regularly.
Why don’t we do the same for death?
There is some effort. Hospice is care for the end of life, but to be in hospice, a doctor must say that a person would reasonably be expected to die within six months. Honestly, doctors are not very well trained in this. The truth is that we tend to refer people to hospice within days or a few weeks of death. I was not well trained in approaching the subject of hospice. Some patients see this as a death sentence: the doctor is saying that I WILL die within six months. I now approach it as a challenge for them. “I could refer you to hospice now, because you might die within six months. They will pay for your medicines and you actually do not HAVE to die within six months. If you live for two years once you are referred, they may fire you from hospice.” Yes, I have had people who were in hospice and came back out. More than one. And I referred one woman because her cardiologist had said her cancer would kill her and her cancer doctor had said that her heart would kill her and she’d already outlived both their predictions and was complaining about an expensive medicine. I said that since they both had told me she’d be dead over a year ago, I was certainly able to refer her to hospice. She thought about it, accepted and then beat the six months. I miss her.
I like to discuss end of life issues. It is not easy, but I would much rather have a difficult discussion than the alternative.
A friend brought her mother, in her upper 80s, to see me in clinic. Her mother was already well past the age when she was likely to die of a sudden heart attack. I started talking about strokes and that it takes 2-3 days for the swelling in the brain to go down. We support people and wait to see if they will be able to swallow. If a person does not recover the ability to swallow, I was explaining why they would die.
“I don’t want to think about this.” she said firmly.
“Well,” I said, “You don’t have to. BUT, if you do not tell us what you want, you might not be able to talk or communicate. If you can’t communicate, your daughter and I will have to make the decisions, and we will err on the side of doing things, treating, rather than not treating. So it is your decision.”
She thought about it. “All right. I am willing to talk about it.”
She did talk about it and she listened to the information about strokes, heart attacks, and told us that if she were sick she would rather stay in Port Townsend. She did not want to be transferred to a big Seattle hospital in the event of a big heart attack or stroke. She wanted to stay in our small hospital, near her family, and use the more limited resources here. She seemed to understand what these were and what we could and couldn’t do. Sometimes transfer to a bigger hospital can slow death, but sometimes it is only by hours or days.
She did have a stroke, some months later. She was able to communicate and her swallowing was affected. She indicated clearly that she wanted to go home. She went home and had her children, grandchildren and a great grandchild present to say goodbye. Her family was very sad but also were prepared, I think, and able to care for her at home. I visited the day before she died. It made me think of a Norman Rockwell painting, with the great grandchild playing happily in the room with a big bed and the family gathered around.
Every person’s response to the end of life is personal, no two are alike. My job as a family physician includes notifying people when I think the end is nearing; asking for their preferences and trying to help the dying person and their family through this sacred transition as best I can.
If that is what a “Death Panel” is, then I have already been on one.