We’d like to share a story about an excellent new book called “Being Mortal: Medicine and What Matters in the End” by author and physician Dr. Atul Gawande who calls for a transformation in how doctors work with patients in their final days.
In the book, Dr. Gawande asserts the American healthcare system’s focus on extending life can often be detrimental to what is best for a terminal patient.
“Medical science has rendered obsolete centuries of experience, tradition, and language about our mortality,” Gawande writes. “Our reluctance to honestly examine the experience of dying has increased the harm we inflict on people and denied them the basic comforts they most need.”
“I learned about a lot of things in medical school, but mortality wasn’t one of them,” Gawande writes. “Our textbooks contained almost nothing about aging. The purpose of medical school was to teach us how to save lives, not how to tend to their demise.”
Gawande notes that as recently as 1945, the majority of deaths in the United States occurred at home, but by the 1980s, the number had shrunk to just 17 percent. “We have allowed our fates to be controlled by medicine, technology, and strangers,” he writes.
“You don’t have to spend much time with the elderly to see how often medicine fails the people it is supposed to help,” Gawande writes. “The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. These days are spent in institutions where regimented routines cut us off from all the things that matter to us.”
To compassionately approach caring for patients in their final days, Gawande believes it takes two kinds of courage. “The first is the courage to confront the reality of mortality (and) the courage to seek out the truth. Such courage is difficult enough, but even more daunting is the second kind of courage—the courage to act on the truth we find,” he writes.
Gawande recounts the story of Jewel Douglass, a 72-year-old patient who was receiving chemotherapy for ovarian cancer. She “was back in the hospital, unable to hold food down. For a week, her symptoms had mounted: They started with bloating, became waves of abdominal pain, then nausea and vomiting,” he writes.
Gawande presented Douglass with options. “The options overwhelmed her so I stepped back and asked her a few questions I learned from palliative care physicians: What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make?”
Douglass said she wanted to alleviate the pain, nausea and vomiting. “Most of all, she wanted to get back on her feet. Her biggest fear was she wouldn’t be able to return home and be with the people she loved,” he writes.
“I don’t want to take risky chances,” Douglass said. “Suddenly I realized, she was telling me everything I needed to know. With just a few simple questions, I had some guidance about her priorities.”
Gawande told Douglass he would do “what I could to enable her to return home while not taking ‘risky chances.’ If it looked risky, I’d just put in tubes to drain her backed-up pipes,” he writes.
Gawande aimed for a contradiction in terms, “a ‘palliative operation’ whose overriding priority was to do only what was likely to make her feel immediately better.” During surgery Gawande found “there were too many tumors” to risk any invasive procedures, “We could create holes we’d never be able to repair. So we stopped. No risky chances,” he writes.
After surgery, Gawande told Douglass he had installed tubes that would relieve her abdominal pain and nausea. Three days after the ‘palliative surgery,’ Douglass was able to go into hospice care in her own home. After she was home, “she allowed me to stop by. I asked how she was doing. ‘OK,’ she said. She had been seeing old friends all day, and she loved it.”
Douglass said she “didn’t like all the contraptions sticking out of her. But when she found they could take away her nausea, ‘I looked at the tube and said, ‘Thank you for being there.’”
“I left feeling, at least this once, we had done it right,” he writes.
Douglass passed away quietly in her sleep two weeks later. “Her daughter Susan sent me a note,” he writes. “She said her mothers’ passing ‘was very peaceful. My dad was alone by her side. This was such a perfect ending.’”
Read the story here.