Dr. Atul Gawande is a renowned surgeon, public-health researcher and medical professor at Harvard. His latest book, Being Mortal: Medicine and What Matters in the End, contains many valuable suggestions for improving the care and treatment of terminally ill patients nearing the end of life.
To begin with, Gawande notes that as recently as 1945, most deaths in the United States, Canada, and other industrialized countries occurred at home. Today, most people in these countries die in a hospital or nursing home.
This change has not always been for the better. Gawande observes that in a typical nursing home, the residents are robbed of privacy and dignity, often consigned to a tiny room with someone they do not know, and subjected to a life of strict regimentation from morning to night. Is it any wonder that many of these hapless residents lapse into a depression?
There is nothing inevitable about such bleak living conditions for the elderly. Gawande describes several model institutions in the United States that are no more expensive to operate than a standard nursing home, yet manage to provide all patients with a private room and considerable freedom to set their own agenda for the day, while also delivering all the personalized care that even the most aged and incapacitated patient might require.
For many terminally ill patients, confinement to a hospital is even worse than languishing in a substandard nursing home. All too often, these patients end up in an intensive care unit where they are afflicted with painful and futile treatments that serve only to prolong the dying process.
Gawande cites the example of Sara Monopolil, a 34-year-old mother who went to his hospital in Boston complaining of a cough and back pain. Tests proved she had lung cancer. Sara was devastated by the diagnosis. She was in the 39th week of pregnancy with her first child. Following a few moments of reflection with her husband, she set as her first priority the safe delivery of their child – a goal that was accomplished later that same day.
On the following day, Sara’s oncologist informed her that the cancer was inoperable, but might respond to chemotherapy. Determined to live as long as possible, Sara chose to undergo chemotherapy, but it soon proved futile. Encouraged by her husband and parents, she then doggedly endured a second and a third round of chemotherapy, each time with little or no effect.
Eight months after her diagnosis, Sara was very sick. She was confined to a wheelchair, her body was riddled with cancer, and she could speak no more than a sentence before pausing for breath. Still, she and her family eagerly grasped at the suggestion of her oncologist that she might yet respond to a fourth round of chemotherapy with an experimental drug so new that researchers had not yet established a safe dose.
However, three days before this treatment was due to begin, Sara’s husband awoke in the night to find her bent over in bed, desperately gasping for breath. He had her rushed back to the hospital by ambulance and placed on a ventilator. Advised by her family physician, she, he and her parents were then finally persuaded that it would be best for Sara to give up the pursuit of a miracle cure and have recourse to palliative care.
Gawande observes that Sara’s ordeal is all too typical. Few physicians are well trained to take the time to help patients like Sara and their families to realize the close approach of inevitable death. “We’ve created a multi-trillion-dollar edifice for dispensing the medical equivalent of lottery tickets,” writes Gawande, “and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win.”
Like Sara, Dave Galloway, a 42-year-old Boston firefighter also chose to fight cancer virtually to the end. Luckily for him, though, he opted for palliative care in time to spend his final days in the familiar surroundings of his own home with his wife Sharon and their three-year-old daughter.
Gawande accompanied Sarah Creed, a palliative-care nurse assigned to Dave’s case, on her first visit to the Galloway home. By then, Dave was in very bad shape. “I wish,” said Creed, “we’d gotten involved sooner.”
According to Gawande, Dave “appeared to have only a few days left. His eyes were hollow. His breathing was labored. Fluid swelled his entire lower body to the point that his skin blistered and wept. He was almost delirious with abdominal pain.”
Creed set to work immediately, setting up a pain pump so Dave could self-administer as much narcotic as he wanted. She then began to teach Sharon how to care for Dave by such procedures as bathing him, protecting his skin from bed sores, changing his linen, and handling the IV lines.
Creed also arranged to have a “comfort pack” placed in a mini-refrigerator beside Dave’s bed that contained a variety of drugs to alleviate everything from breakthrough pain to shortness of breath, nausea, delirium, and anxiety attacks. And she gave Sharon an emergency number for a hospice nurse who would be available to provide around-the-clock assistance.
By these means, Dave was able to spend his final days at home in relative comfort. He could sleep through the night, play with his daughter, and occasionally enjoy such pleasures as a hot shower. Until his death, he and his family were almost certainly much better off than they would have been had Dave chosen instead to seek yet another miracle cure in the hospital.
While Gawande’s book is full of such valuable insights on the care and treatment of elderly, infirm, and dying patients, he wanders off near the end into a disastrously wrong digression on euthanasia. He states that he would support the legalization of physician-assisted suicide in exceptional cases that are strictly defined and limited by “tightly circumscribed” controls.
Specifically, Gawande commends regulations in The Netherlands and Belgium. He claims that these rules only allow physicians to write lethal prescriptions “for terminally ill adults who face unbearable suffering.” That statement is completely wrong. Gawande should know that there is no regulation in either The Netherlands or Belgium that restricts euthanasia to terminally ill adults. As a medical professor, he should also be aware of a notorious article on the “Groningen protocol” published in The New England Journal of Medicine in 2005 in which a team of Dutch physicians disclosed that physicians in The Netherlands are allowed by law to euthanize infants “who are not dependent on intensive medical treatment but for whom a very poor quality of life, associated with sustained suffering, is predicted.”
Experience with euthanasia in The Netherlands and Belgium is typical: no strict and effective safeguards for euthanasia have yet been established in any jurisdiction that has legalized the deliberate killing of patients.
At least, Gawande has some awareness of the dangers posed by legalized euthanasia. He writes: “The fact that, by 2012, one in 35 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.”
Apart from the aside on euthanasia, Being Mortal is a very good and informative book. It is strongly recommended for anyone interested in improving the quality of life and care for people in the end-stage of life.