When facing the end of life, most people fear the multiple ways they may suffer from losing their health, according to Atul Gawande, M.D., a Harvard University physician.
Even more than that, they fear isolation from others who have given their lives meaning and losing control of how they will spend their last days.
In his book “Being Mortal: Medicine and What Matters in the End” (Henry Holt, 2014), Gawande reveals how people can plan for end-of-life care in the way they want. When people take the time to discuss what they want – and don’t want – before they are in the grip of crisis and fear, he said, they are more likely to enjoy the end of life.
“People with serious illness have priorities besides simply prolonging their lives,” Gawande writes. “They want to avoid suffering, but they also want to strengthen their bonds with family and friends and attain the sense their life is complete.”
In his book, Gawande ponders the question: “How can we build a health care system that will actually help people achieve what’s most important to them at the end of their lives?”
All too often, the medical system unwittingly subverts that. Gawande cited the story of a cancer patient named Sara, who had said after her diagnosis that she didn’t want to die in a hospital.
But that’s exactly what happened. Sara and her doctor were not able to talk honestly about what to do if her treatment didn’t work. After three rounds of chemotherapy, “Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects,” Gawande shares in his book. “This is a modern tragedy, replayed millions of times over.”
Part of the problem is that doctors tend to be overly optimistic about how long their terminally ill patients will live, or the chance that yet another drug genuinely will help. One study Gawande cited revealed that 63 percent of doctors overestimated their terminal patients’ survival time, and the average estimate was 530 percent too high. Doctors were more likely to overestimate if they knew their patients well.
Another part of the problem is that patients are often admired for being “fighters” when they face daunting illness. That leads family members and friends to push for every possible procedure or therapy to prolong life, even if it means the patients spend their last days miserable in a hospital bed, immobilized, intubated and unable to talk – or in an intensive-care unit, isolated from their loved ones.
Navigating end-of-life care
There are alternatives. They start with discussions about how to navigate old age and illness, where to live and what kind of care people want when the end is near. The time to talk about this is before old age or illness leave people fearful and reacting to sudden crises, Gawande said.
For some, options include assisted living centers that permit people to control their lives while getting as much support as they need.
Gawande’s book describes new models of assisted living that set up household “pods” of a dozen people, each with their own private room but also with access to communal living areas and a kitchen.
For others already ill, the choice may be to get palliative care and hospice help. People can continue to undergo full-fledged medical care while also getting palliative care and hospice – they are not mutually exclusive.
Choosing to forego the “fighter” model (getting every long-shot drug or procedure) may have another unexpected benefit. Advanced cancer patients live 25 percent longer and suffer less if they get more palliative care or hospice and less chemotherapy, according to studies cited in the book.
“If end-of-life discussions were an experimental drug, the FDA would approve it,” Gawande writes. “People who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”
“Being Mortal” and other books on end-of-life care are available at Stanford Health Library. Electronic books are accessible through the library website at healthlibrary.stanford.edu/resources/ ebooks.html. Using the login and password available on the main screen, click the blue “EBSCO Host” button and enter the login and password.
The main branch of Stanford Health Library is located at Hoover Pavilion, 211 Quarry Road Suite 201, Palo Alto. Hours are 9 a.m. to 5 p.m. weekdays. Other locations include Stanford Cancer Center in Palo Alto, the Ravenswood Family Health Center in East Palo Alto and Stanford Cancer Center South Bay in San Jose.