Healthcare and the last days – Letting go
The surgeon Atal Gawande asks, “What should medicine do when it can’t save your life?” In the U.S., terminally ill patients are most often given aggressive cure-at-all-costs treatment rather than palliative, or comfort care. But while patients live about the same amount of time whichever choice is made, for aggressive treatment the quality-of-life is much lower, and the economic costs are enormously higher. Gawande suggests that, for terminally ill patients, by changing the focus of their care to quality-of-life rather than aggressive treatment, the economic problem itself will be significantly lessened as a result.
My son Jon, who is a young physician, sent me this recent article by Gawande from the New Yorker and described it as “an incredibly thoughtful article about end-of-life issues, and palliative care.” It is entitled Letting Go. Jon says, “It is one of the best medical pieces I’ve ever read, and written by a surgeon nonetheless! Atul Gawande is my hero.”
Gawande cites multiple studies which show that in cases of terminal cancer, today’s patients are routinely treated for a short-term cure when the odds are astronomically against them; these patient’s final days are nasty, brutish and short, and significantly, they live no longer than if they weren’t treated for a cure. They spend their time in utter agony from radical surgeries, chemotherapy and the like, and have little time to spend with their families. Their families, who do not want to “pull the plug on grandma,” spend their last months with the patient in great anxiety, hoping for a cure that isn’t going to come, and in chronic fear against that hope. Even worse, studies show that these family members take much longer to deal with and accept the inevitable death of their loved ones; it is arguable that in addition they missed the best part of their loved ones in the process.
Gawande points to the alternative: palliative, or comfort, care; patients with a terminal illness who choose not to fight long odds just for a few more miserable months of life can be managed for their comfort. That is, the focus becomes extending the quality of life rather than trying for a short-term cure. Palliative care is much more than just providing medications to dull the pain, because each treatment option is optimized for comfort, such as the use of diuretics to treat the symptom of edema for someone with congestive heart failure, so that the discomfort from the puffiness and tight skin is lessened and the patient is thus made more comfortable. The same studies show that, when this approach is taken, the life expectancy is, on average, about the same as for those fighting for a short-term cure, the patients’ quality of life is signicantly increased, and the family is allowed to focus on helping provide comfort; the anxiety for the patient and the family is significantly reduced, and the grieving process takes its course in a less stressful and more humane atmosphere.
My father-in-law, Burt Ferguson, was diagnosed with a terminal illness two months ago; he has an advanced case of mesothelioma, a cancer of the pleural lining caused by asbestos exposure, and chose palliative care rather than aggressive treatment. He is currently living in our home, and palliative care is being provided together by his family and a home hospice service.
Burt’s wife Evelyn died a few years ago from an incurable liver cancer, after an extended chemotherapy regimen. She was in her late 70’s when the cancer was initially diagnosed, and she opted for an aggressive chemotherapy treatment for the next year, then stopped the chemo, and died a month later. Burt said that during that last year her life went from miserable to terrible. She lived a half life, full of nausea and pain, had to force herself to eat, was listless and depressed, mostly bedridden, and slowly withdrew into an interior world of chronic discomfort. During this time, not one healthcare professional counseled he and Evelyn regarding their options or about the lessened quality of life that their decisions would necessarily bring if aggressive treatment was chosen.
After that brutal experience, Burt vowed that when his time came, he would not choose aggressive treatment if that was what he had to look forward to. When he was diagnosed recently with terminal cancer, his family (his children and their spouses) supported him in his decision for palliative care, as did his pulmonologist. Burt has now spent two months being given palliative care rather than curative intervention, and he has not regretted it. We have been able to spend many hours with him, and he has been lucid, mostly pain-free, and we focus on his comfort and his wishes rather than a desperate and unlikely “cure.” There have been many tears shed; this alternative doesn’t lessen the pain of knowing you are going to lose a loved one. We are free to talk about his death, as is he, as the natural ending of his life.
It is hard to let go; the decision to use palliative care is very difficult for patients, physicians and family. In Burt’s case, he came to his own decision through the hard experience of his wife Evelyn, but many people don’t have that specific experience to shape their opinions, or they don’t know their alternatives. Gawande suggests that healthcare professionals, who are deeply experienced in the finality of death, need to help patients, who of course die only once, to make these decisions, by informing them more thoroughly and patiently about their options, and doing it early and often. Today’s U.S. doctors and nurses are often not trained to do this, but they certainly can learn. There are many examples, both in the US and Europe, where a shift in emphasis by healthcare organizations for terminal patients from cure-at-all-costs to quality-of-life, followed by solid training, significantly changes the percentage of terminal patients who select palliative care over aggressive treatment.
For terminally ill patients, palliative care is a viable alternative to aggressive treatment; their life expectancy is about the same as for aggressive treatment, and the quality of life is much increased for the patient and their families. Fear-mongering by politicians about “death panels” does their constituencies a great disservice by making the conditions for the provision of palliative care more difficult, and induces those same constituencies to fearfully reject what may be the best option for their dying loved ones, and ultimately for themselves as they come to end of their own lives.