We’re all going to die. (There’s nothing like starting on a positive note! ? ) We’re all going to die, and if we are fortunate enough to survive long enough to become old, we’re all going to experience a decline of one sort or another before we die: reduced hearing and vision, less strength, poorer memory, etc. As a society, and as a medical profession, we have been reluctant to confront those issues head on. Dr. Atul Gawande faces them unflinchingly in his thought-provoking new book Being Mortal: Medicine and What Matters in the End.
In a simpler time, there were fewer old people; they were respected for their knowledge and were cared for by their families who supplied their increasing needs as age made them more dependent on others; they died at home surrounded by supportive loved ones. Today we warehouse our elders in nursing homes, where they are denied the independence of even making simple everyday choices like when to get up and when to eat. We consign them to a regimented, less enjoyable, less meaningful life; and they frequently die alone in hospitals, connected to tubes and machines.
Doctors are not always good at making it clear to terminally ill patients that they are going to die soon. They are not always good at discussing end-of-life issues and securing advance directives. They often treat end-of-life diseases so aggressively that they end up causing more suffering or even shortening lives.
Unreasonable decisions vs. reasonable decisions in support of different goals
I recently wrote about unreasonable decisions in situations where the doctor and patient agree on a goal, like avoiding death, and the patient lets emotion overcome reason and refuses the treatment most likely to achieve that goal.
There is a very different problem when patients have a reasonable goal that is not the same as what the doctor understands. One woman with advanced cancer had a goal that was more important to her than living a few weeks or months longer: she wanted to be in good enough shape to attend an upcoming family wedding. The risk of being temporarily incapacitated by complications of cancer treatment and missing the wedding was less acceptable to her than the risk of shortening her survival by refusing or delaying chemotherapy. All one man really cared about was being able to enjoy chocolate ice cream and sports on TV. Patients have to decide what is most important to them; doctors can’t dictate how they should choose. When there is uncertainty about the benefits of treatment, the default is to do something, but that isn’t always the wisest course. When patients are dying with metastatic cancer or other incurable diseases, doctors may offer unrealistic hopes and treatments that can actually shorten life and make the remaining days less endurable. Gawande urges doctors to ask questions like these:
- What is your understanding of your current health or condition?
- If your current condition worsens, what are your goals?
- What are your fears?
- Are there any tradeoffs you are willing to make or not?
- What would a good day be like?
He confesses his regrets about how he has treated patients. He describes how he struggled with his conscience as a surgeon when a patient insisted that he do everything possible, how he reluctantly agreed to do a risky operation that offered a small chance of improvement but had no chance of restoring the patient to his former state of functioning, which is what the patient really wanted and hoped for unrealistically. What the patient didn’twant was to suffer a slow, painful death, and that’s exactly what he got thanks to prolonged post-op complications.
Gawande succeeds best at really putting a human face on these dilemmas when he describes his own father’s long decline and eventual death from a spinal tumor. His parents were both doctors, but that didn’t make it any easier for them to make the difficult decisions. His mother had trouble accepting the reality of his father’s illness. His father made a rational decision to delay risky palliative surgery until his symptoms became incapacitating. He struggled with deciding when he was too impaired to keep practicing medicine safely. He became frustrated as his pain increased and the pain meds caused side effects. At the end, he was reluctant to accept hospice care but finally agreed. Gawande suffered along with him every step of the way as both a son and a doctor, and he tells a very affecting story in all its excruciating detail.
What makes life worth living?
People often say that they would rather die than become a burden on others, that they would feel unbearably humiliated if they could no longer dress, bathe, or feed themselves or wipe their own derrieres after using the toilet. Some people think life wouldn’t be worth living if they lost limbs, became paralyzed, blind, or deaf; but people who have those limitations usually still find life worth living. A French journalist, Jean-Dominique Bauby, became paralyzed and had locked-in syndrome. He was mentally alert but unable to move or speak; the only thing he could do was blink his left eyelid. Still, he found a way to enjoy life. He worked out an eye-blink code with a partner that enabled him to write a book, Le Scaphandre et le Papillon (The Diving Bell and the Butterfly); a word took two minutes to write, and the book took 200,000 blinks to write. But it gave him a sense of purpose and accomplishment, and he describes how much he enjoys meeting visitors and going to the beach with his family.
Doctors don’t have the right to decide whether an individual’s life is worthwhile. People can only decide for themselves what makes their life worth living. For some people, immobility might be an intolerable torture. I personally think I could learn to value and enjoy life with almost any limitations as long as I was mentally intact and able to communicate. But that’s just me. And I might change my mind.
We are doing better
There are some encouraging developments. There are innovative assisted living facilities where the elderly can live in their own apartments, socialize in a small community, keep pets, and lock their doors; where they can feel safe, have ready access to whatever help they need with the activities of daily living, and get immediate medical care when needed. Death with dignity laws have been passed in several states. We have experts in palliative care who can keep patients comfortable and whose services have even been shown to extend life. The hospice movement has vastly improved the end-of-life experience for many patients. Hospice does not mean denial of treatment or giving up. Under hospice care, whether at home or in a hospice facility, the goal is to keep patients comfortable and respect their wishes, not to prolong life; but paradoxically it turns out that hospice patients live longer! Hospices have become so widespread that nearly half of all deaths now occur in hospice.
We’re all going to die, and most of us will experience a slow decline before we do. Warehousing the elderly is inhumane. Keeping patients alive as long as possible is not the only goal of medicine. Medicine’s goal has always been “To cure sometimes, to relieve often, to comfort always.” We should strive to humanize the experience of aging and the process of dying. Gawande’s book has lessons for all of us, whether we are doctors, nursing home personnel, or just growing older.
This article was originally published in the Science-Based Medicine Blog.