When the Supreme Court opened the door to legally assisted death last week, I imagined I could hear my mom applauding. She did not believe in unnecessary suffering. She did not have a good death. The terrible pain she experienced made her last weeks on Earth a living hell.
But the option of assisted death will do very little to address the bigger problem we face. Without broad changes in medical and social practices, a "good death" will probably continue to elude most of us. Ideally, we'd all live in robust health till age 95, then die quietly in our sleep. In the real world, few of us will be so lucky. For most, the slow march toward the end will be marked by a lurching slide into increasing debility, punctuated by repeated hospitalization and painful, often futile treatments. Too many of us will die in institutions, hooked up to machines, with chemo in our blood – victims of all the best modern medicine has to offer.
What really matters in the end? This is the question American surgeon Atul Gawande tackles in his book Being Mortal – an utterly unflinching yet compassionate account of old age and end-of-life issues. If you have any older people in your life, or plan to be one yourself some day, you need to read it.
Dr. Gawande points out that most physicians are miserable at talking to their patients about death. One study found that two-thirds of terminal cancer patients reported having had no discussion with their doctors about goals for end-of-life care – even though they were on average just four months from death. A recent Canadian study found that nearly half of all cancer patients still die in a hospital, rather than in a hospice or at home.
For doctors, death is a defeat. Their every impulse is to treat, even when treatment probably won't prolong life and may well inflict more suffering. "We imagine that we can wait until the doctors tell us that there is nothing more they can do," Dr. Gawande says. "But rarely is there nothing more that doctors can do … We fall back on the default, and the default is: Do Something. Fix Something."
Brian Goldman, a Canadian emergency-room doctor, couldn't agree more. "It's the rare physician who prepares patients to die well, or who will even acknowledge that death is possible, much less imminent," he wrote last month in Chatelaine.
There's another problem. Institutional indifference, callousness and failure can (and often does) defeat our good intentions. That's what happened to my mom.
During her last year of life, it was increasingly obvious that she was sick. She lost a lot of weight and complained that she was in pain. But, probably because she knew the truth, she refused to see a doctor about it. Finally, when the pain became unbearable, she agreed to go. He sent her for a test, which showed a "mass" in her abdomen. He wouldn't tell us what that meant, but he didn't sound optimistic. It turned out to be advanced pancreatic cancer.
Mom wound up in one of the best hospitals in Canada. "All I want is something for the pain," she begged as we waited for her to be admitted. I promised she would get it. The doctors and nurses told us not to worry – they would control the pain. But they didn't. For some inexplicable reason, the pain medication was severely rationed, and she was suffering epic waves of pain. We complained to everyone in sight, but it did no good. I would sit with her and beg her to hang in there until the scheduled time came for her next dose. One night, when it failed to arrive, I frantically hunted down the nurse, who told me snippily that he didn't have time to attend to Mom because he had paperwork to do.
This kind of institutional malpractice, I've learned, is not terribly unusual. Doctors have told me it happens all the time. Still, I feel that I profoundly failed my mom. She asked me for just one thing, and she didn't get it.
My point is that the vast majority of the frail, the elderly and dying – people like my mother – don't need assisted death to ease their passing. What they really need is a vast culture change in the way we care for them. What they and their families need is the assurance that simple compassion and humanity will not be smothered by complex systems and bureaucracy. Unfortunately, no law can guarantee that.