Generally lotteries are benign enough. Most of us spend pocket change for a chance to win millions, even though, deep in our hearts, we know the huge odds against us. In fact, if you invested a thousand dollars in the lottery every day for two weeks, at the end of that time, for the average lottery, you would be left with 78 cents. But, we play anyway.
As we near the end of life, some of the same principles apply. As discussed in Atul Gawande’s brilliant Being Mortal, when struggling with cancer or other end-stage disease, many people grasp at options with little hope of being one of the few lucky survivors. We pay for these options with a mix of financial resources, pain, anxiety, and—frankly—precious time. Sometimes we make these decisions for ourselves, and sometimes we make these decisions for our loved ones who can’t let go. However, unlike a lottery, the costs are not fixed and tend to escalate over time. We pay more and more as we get closer and closer to the end.
Dr. Gawande notes multiple studies showing our natural response, fighting to the end, may not be in own our best interests.
A study from Massachusetts General Hospital in 2010 offered patients undergoing cancer treatment a palliative care specialist in addition to conventional therapy. Patients with the additional specialist went into hospice earlier but actually lived 25% longer. In another study of almost 4500 patients with a wide range of end-stage diseases, patients who entered hospice again lived longer—three weeks longer if they had pancreatic cancer but up to three months longer if they had congestive heart failure. As Dr. Gawande notes, “you live longer only when you stop trying to live longer.”
With our dedication to fixing and curing, we doctors do not do better at end-of-life decisions. In a study of roughly 500 doctors specializing in end of life, Nicholas Christakis found that two thirds overestimated their patients’ chances of survival. The average estimate was five times greater than the patient’s condition warranted. As a patient, you might be willing to undergo painful and time-consuming therapy for six months of additional survival but have second thoughts if the additional treatment were only going to buy you 30 days.
Being Mortal’s most important message is to have the conversation about end of life earlier in the process. This is a task we run from, feeling that even having the discussion implies we’ve given up hope. However, at later stages of illness, critical medical decisions cannot always be scheduled. And not knowing what our loved one wants, we often end up making ill-advised choices simply because we feel we have to do something rather than nothing. The default is quantity over quality.
When you do have a discussion, it should be personal and specific. As recounted in the book, for one person quality was the ability to eat ice cream while watching a football game. For another it was the human interactions they valued the most. At some point, for all of us, more medicine is not worth the cost. The discussion about end of life is an opportunity to take control and, in some sense, define what it is to be human.
Among your best writing Alan! Hope to break bread before we leave the heat!
Agree wholeheartedly. I think this is somewhat fostered by a mistrust of traditional medicine and a feeling that there are cures or treatments out there that patients feel are being withheld or not offered. After hearing this from several patients I was quite surprised that this seemed to be a fairly common perception that I was not even aware of.