Last year Dr. Ken Murray, a pediatrician at USC, published an article called "How Doctors Die." In it he describes how physicians, many of whom witness end of life care and death as a regular part of their practice, often choose to die differently than their patients. He gives the example of a friend of his, an orthopedist who found out he had a very lethal form of pancreatic cancer. Instead of enduring surgery, chemotherapy, radiation and long hospital stays, he instead chose to close his practice and spend his last months at home, surrounded by his friends and family. Dr. Murray goes on to talk about "death with dignity" and how many physicians choose to avoid the extreme end of life measures that they regularly provide to their patients.
Though the article was beautifully written and thought provoking, it wasn't very academic. He spoke from personal experience, and included no references. Some readers asked for data to back up his observations, so last week Dr. Murray posted a follow-up article with a more critical examination of the evidence. That article, "Doctors Really Do Die Differently," entertained a variety of studies with topics ranging from living wills to CPR effectiveness. Both are good and worth a read.
The topic of end of life care is eerily applicable in my life right now. On Saturday morning I got a call from my Mom telling me that my great-grandmother passed away. She was 101 years old (almost 102!) and her health had been in decline for decades now. A couple of nights ago she fell and broke her hip. The paramedics came, options were discussed, and it was decided that taking her to the hospital and trying to perform surgery wouldn't do much good--she was on the way out. They provided morphine to be administered through the night, to keep her as comfortable as possible. My wonderful mother sat with her through the night and held her hand as she passed away in the morning. (You can read my tribute to Grandma Ada here).
As I sat down to start writing this post I thought about the hard decisions that were made that night. I thought about Dr. Murray's comments about “death with dignity.” Grandma Ada did have a living will, but it wasn’t accessible at the time. She had made it clear, however, that did not want her hip replaced (again) if she broke it and that she did not want to die in the hospital. Had she been rushed to the emergency room and aggressively treated it would have just been prolonging the inevitable, not to mention putting her through a lot of unnecessary pain and discomfort. It was her time to go, and I’m glad that it was at home, surrounded by family, and in peace.
The topic of end of life care is one that has been receiving quite a bit of attention from some big names. Time Magazine’s Joe Klein recently did a cover story about his experience being, as he described it, his parents’ “death panel.” The story, called “How to Die,” is both a memoir of his parents and an indictment of our fragmented, “fee-for-service” healthcare system (the article requires Time membership; the video summary is free). Newsweek also had a cover story broaching the subject. Written around the time of the claims that the ACA included "death panels," Evan Thomas’s "The Case for Killing Granny" told the story of his grandmother’s experience of having to insist that she wanted to be placed in hospice rather than stay in the ICU. Both stories highlight different weaknesses in our current approach to end of life care and suggest ways that we can improve.
As a future physician, I am proud to become part of a profession that has such a high regard for life. Physicians are rightfully on the offensive to keep death at bay. However, if we always equate life as a “win” and death as a “loss,” without regard to quality of life, then in the grand scheme of things medicine is a zero-sum game—in the end, we always lose. If, however, our determination--our almost righteous zeal--to protect life is accompanied by a reverence for the inevitable experience of death, then helping to ease a patient’s departure from this life, according to her preferences, can be seen as one of medicine’s sweetest triumphs.
As Evan Thomas put it,
“Our medical system does everything it can to encourage hope. And American health care has been near miraculous…But death can be delayed only so long, and sometimes the wait is grim and degrading. The hospice ideal recognized that for many people, quiet and dignity—and loving care and good painkillers—are really what's called for.”
This week I started my second year of medical school. I already consider my summer here at the New America Foundation an invaluable part of my medical education, and I am sad to leave. My great-Grandmother’s passing has coincidentally provided me with the perfect opportunity to craft a farewell post about one of the topics that I have become passionate about this summer—shared decision making. Throughout all of a patient’s life, she should have an active role in her care. Though this applies at all stages of life, it is especially applicable at the end of life. What makes these end-of-life decisions different from those made earlier in one’s life is that they must be made in advance.
As a final request at the close of my internship, I ask that you have a discussion with your loved ones about end of life care. Talk about what you want to happen and (perhaps more importantly) what you don’t want to happen. Consider drafting a living will or advanced directive, and making sure that someone always knows where it is. It was fortunate that Grandma Ada’s wishes were honored without having to pull out the legal paperwork, but that is often not the case. Evidence has shown that those take the time to create a living will are far more likely to receive the care that they want when they can no longer speak for themselves. That goes for people who want every intervention possible, as well.
Ultimately, honoring wishes about end of life care isn’t about costs; it’s about your will being made known about one of the most important moments in your life. Then, and only then, can healthcare professionals do what they are called to do: enable you to live your life, as you want to live it, with minimal pain and suffering.