“We don’t call it that anymore,” said the social worker from the hospice agency. She had been talking in a vague and confusing way about “death with dignity.” What was she trying to say? “Are you talking about physician-assisted suicide?” I had asked.
Looking over her reading glasses at me, she continued typing on her laptop. As she corrected me, it was as if I had said something gauche or profane.
My sister and I were meeting with members of the hospice team after her diagnosis with a terminal illness this past summer. She would stay at home. My nephew and I would be the primary care team with backup from an out-patient hospice program and friends. One by one we met with the members of the team: an administrator who did an intake interview, a nurse who would come for a weekly visit, and a social worker and spiritual counselor who were on call.
The visit with the social worker had been cordial until I mentioned “physician-assisted suicide.” “Now,” she said brusquely, “we speak of ‘death with dignity.’ ” Well, all righty. She went on to say that a group called “Compassion & Choices” could tell us all that we needed to know about death with dignity.
I get it, of course. “Suicide” is a freighted word. But it is certainly notable how cleaned up and bland the new terminology is. Death with dignity, Compassion & Choices. End of life in Mr. Roger’s Neighborhood.
My sister had 40 days from the date of her diagnosis with metastatic cancer throughout her body to the day of her death in late August. In many ways, those 40 days were a good, really a precious, time. Hers was a good death. It was a tough hand, but she played it well.
She did say she wanted to look into “whatever-you-call-it, maybe just to have that option,” as she put it. She asked what I thought. I have reservations about whatever-you-call-it, but said that it was up to her and I would support her if that was her choice.
The Compassion & Choices volunteer outlined the process, very earnestly and at considerable length, over the phone to the two of us. My sister would need to see two different physicians, a total of three visits. Fifteen days had to pass between first and last time she saw a doctor to get their okay. Then there was the matter of obtaining the actual death inducing agent, which is costly, in excess of $1,500.
“You don’t want to order it until you’re ready,” explained the Compassion & Choices volunteer. “Then I will come and mix it for you, and give it to you to make sure you get it right,” she said — a bit over eagerly, I thought. “And you don’t want to eat anything for fours or five hours before.” So much for the last supper.
But the experience with my sister made me wonder if the long-running debate over physician-assisted suicide, now legal in Washington, may miss the real issue: Life is being prolonged in ways that ought to be considered and possibly declined earlier.
My sister had chosen, after consulting doctors, not to pursue treatment. After the diagnosis of metastatic cancer, she chose not even to spend the night in the hospital. She said to the friends who were with her, “Let’s go home.” They got on the ferry to Whidbey Island, went home and they ordered Thai take-out.
In a recent, provocative article in Atlantic magazine, Ezekiel Emanuel (the brother of Chicago’s Mayor, Rahm Emanuel) tells readers, “Why I Hope To Die at 75.”
Emanuel writes, “At 75 and beyond, I will need a good reason to even visit the doctor and take any medical test or treatment, no matter how routine and painless. And that good reason is not ‘It will prolong your life.’ ”
The gist of Emanuel’s argument is that we are being offered medical treatments and procedures that keep us going a lot longer than may make sense. Yes, we are living longer but the time of genuine disability and dementia is also longer. My father, for example, had Alzheimer’s disease but was receiving, unknown to us, an annual shot to prevent pneumonia.
Emanuel’s solution is to, “Just say No,” starting at age 75. “I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative — not curative — treatments if I am suffering pain or other disability.” Emanuel includes antibiotics on his list of options to decline.
Emanuel’s argument has drawn a chorus of protests online, including Palinesque cries of “death panels.” But it is possible that if more of us took this path, or something like it, there would be a lot less need for physician-assisted suicide and a lot more death with dignity. We would have died in old age as did generations before us of ordinary infections and illnesses, like pneumonia, once termed “the old person’s friend.”
As it is, modern medical practice, coupled with the desire to sustain life at most any cost, means that we have life-prolonging treatments and procedures into our dotage. For the large majority of us, taking the Emanuel prescription would render physician-assisted suicide a choice we would never face.
Don’t get me wrong. Had my sister had any really promising treatment options, I would have encouraged her in those. She was only 63, just about to retire, with lots to live for. But at 85 or 90 or 95 — not so much. Maybe instead of fighting our pitched social battles over physician-assisted suicide, we ought to look at the decisions and choices made earlier — those that prolong life when it may be time to let go.
There would, of course, still be those instances when physician-assisted suicide comes up, say the 40 year-old woman with a painful cancer. I still have my reservations (which involve concern about people feeling pressured, confidence that pain control can be effective and the flawed world view that we are in full control of our destinies). But the über-focus on people’s right to end their own life is probably a distraction from larger issues of health-care policies and even the choices we make much earlier.
As it happened, we never took the steps discussed with the Compassion & Choices volunteer. Time was too short. My sister, while remaining remarkably alert and functional, grew weaker, stopped eating, went to bed and, after three days, stopped breathing on a sunny August afternoon. We were able to keep her comfortable with hospice-provided pain relievers and to hold her at the end.
And she did die with dignity.