Being Mortal: Medicine and What Matters in the End

At root, the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life. We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary. We believe that, with help, the remembering self will later see matters differently than the experiencing self—and indeed only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive. But for the terminally ill who face suffering that we know will increase, only the stonehearted can be unsympathetic.

 

All the same, I fear what happens when we expand the terrain of medical practice to include actively assisting people with speeding their death. I am less worried about abuse of these powers than I am about dependence on them. Proponents have crafted the authority to be tightly circumscribed to avoid error and misuse. In places that allow physicians to write lethal prescriptions—countries like the Netherlands, Belgium, and Switzerland and states like Oregon, Washington, and Vermont—they can do so only for terminally ill adults who face unbearable suffering, who make repeated requests on separate occasions, who are certified not to be acting out of depression or other mental illness, and who have a second physician confirming they meet the criteria. Nonetheless, the larger culture invariably determines how such authority is employed. In the Netherlands, for instance, the system has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.

 

Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.

 

In the throes of suffering, this can be difficult to see. One day I got a call from the husband of Peg Bachelder, my daughter Hunter’s piano teacher. “Peg’s in the hospital,” Martin said.

 

I’d known she had serious health issues. Two and a half years earlier, she’d developed a right hip pain. The condition was misdiagnosed for almost a year as arthritis. When it got worse, one physician even recommended seeing a psychiatrist and gave her a book on “how to let go of your pain.” But imaging finally revealed that she had a five-inch sarcoma, a rare soft-tissue cancer, eating into her pelvis and causing a large blood clot in her leg. Treatment involved chemotherapy, radiation, and radical surgery removing a third of her pelvis and reconstructing it with metal. It was a year in hell. She was hospitalized for months with complications. She’d loved cycling, yoga, walking her Shetland sheepdog with her husband, playing music, and teaching her beloved students. She’d had to let go of all of that.

 

Eventually, however, Peg recovered and was able to return to teaching. She needed Canadian crutches—the kind that have a cuff around the forearm—to get around but otherwise remained her graceful self and refilled her roster of students in no time. She was sixty-two, tall, with big round glasses, a thick bob of auburn hair, and a lovely gentle way that made her an immensely popular teacher. When my daughter struggled with grasping a sound or technique, Peg was never hurried. She’d have her try this and then try that, and when Hunter finally got it, Peg would burble with genuine delight and hug her close.

 

A year and a half after returning, Peg was found to have a leukemia-like malignancy caused by her radiation treatment. She went back on chemotherapy but somehow kept teaching through it. Every few weeks, she’d have to reschedule Hunter’s lesson, and we had to explain the situation to Hunter, who was just thirteen at the time. But Peg always found a way to keep going.

 

Then for two straight weeks, she postponed the lessons. That was when I got the call from Martin. He was phoning from the hospital. Peg had been admitted for several days. He put his cell on speaker so she could talk. She sounded weak—there were long pauses when she spoke—but she was clear-voiced about the situation. The leukemia treatment had stopped working a few weeks before, she said. She developed a fever and infection due to her compromised immune system. Imaging also showed her original cancer had come back in her hip and in her liver. The recurrent disease began to cause immobilizing hip pain. When it made her incontinent, that felt like the final straw. She checked into the hospital at that point, and she didn’t know what to do.

 

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