News and Narratives of Interest – 2016

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Talking the Talk.

Two very different books, two very different deaths, have made me think again about whether and how we talk to those closest to us about our life’s ending. What is important to us at the end of life? What will we value? Who do we want to be with us, and where? What wishes do we have about organ donation, about last rites and our body’s remains?

Paul Kalanithi, at age 37, was a last-year neurosurgery resident, about to embark on a promising career as a physician. He had hoped that he could combine his love of literature and writing with his medical career in some way: after all, he achieved an advance degree in literature before he decided to change course completely and study medicine. But his career in medicine ended with the completion of his residency training; and his one published book is the beautifully written memoir, When Breath Becomes Air, chronicling the last 22 months of his life, a time spent living with and then dying from lung cancer. Kalanithi had these months to think about, and to talk with his wife and his doctor about, what was important to him, what really mattered in his remaining life. In fact, his oncologist pushed him to do so.

The Heart: A Novel by French author Maylis De Kerangal is also beautiful, even in translation, but very different. It is the fictionalized account of the nightmare every parent fears, the death in an automobile accident of Simon Limbres, age 19, a brain death that left his heart and other organs alive, vital, and transplantable. The book takes place over 24 hours, hours in which Simon’s parents must live with his dead but alive body, and consider what Simon would have wished had he been able to make his wishes known.

If we are fortunate, neither of these scenarios will be ours. But we will all die, and most of us will be caregivers for a relative or close friend who dies. As we have noted in previous News and Narratives articles, it seems as if there is a more open public conversation about death, as indicated, for example by the popularity of Kalanithi’s book, and of Atul Gawande’s earlier book, Being Mortal. Yet it still seems as if it is a long and perhaps treacherous path between this public conversation and the very personal and private conversations we each need to have.

That path, we hope, will be smoothed out somewhat by the regulations now in effect that allow Medicare to reimburse doctors or other practitioners (nurse practitioners, for example) for conversations about end of life planning. Most private insurers are, or will be, following suit. Right now, it is estimated that only 17 percent of adults (or 7 percent as reported in a recent California poll) have had these conversations about their wishes at the end of life with their doctors. The Conversation Project has a very useful guide sheet for these conversations.

It is very important for us, as patients and families, to take the lead in having these conversations with our doctors, but why are the physicians themselves not the ones initiating conversations as part of good quality care? A recent poll by the Hartford Foundation found that physicians overwhelmingly believe that it is important to have these conversations with their patients, and they all feel that reimbursement by Medicare and other payers will remove a barrier to enabling such conversations to happen. Yet almost half say they are unsure of what to say, and fewer than one-third have had any formal training or education around conversations about advance care planning and end of life wishes. Those who have had training are much more comfortable having conversations with patients. Other barriers, including electronic medical records with no place to record such conversations or the advance care plans themselves, are still blocking the path for many, and perhaps most physicians and patients.

Training physicians is clearly important, but we should remember that it is only the beginning. They will still need our help as patients, they will need experience, and they will need reflection. Ideally physicians would have opportunities to talk with each other, to share experiences, and to learn how to deepen and sensitize their conversations. A doctor’s April 2016 article in The Washington Post can be one we keep in mind as we work to improve physicians’ and patients’ communication capabilities in this arena of such critical importance to all of us. Ravi Parikh first discussed advance care planning with his new 90-year old patient when they were reviewing the patient’s medical record in the cardiac clinic. The conversation consisted of a disagreement between doctor and patient about whether or not the patient should have a Do Not Resuscitate (DNR) order in his chart. The patient insisted that despite his history of heart events and disease, and despite the likelihood that CPR would not extend his life, he wanted every effort to be made to keep him alive. The patient’s wishes prevailed, of course, but Parikh was disturbed at the way the conversation had gone. Had he, the physician, really been patient-centered, or had he been pushing DNR because he had not really engaged in understanding his patient?

Before that patient’s next visit, Parikh did some studying, visiting various web sites that would help him learn to actually talk and listen to his patient, to have a conversation rather than to apply a formula. What matters most to you, Parikh asked his patient during their second conversation. The plan that resulted from this question maximized the patient’s chance to do what mattered most to him before he died – to meet his new great grandchild arriving soon from Ethiopia. The DNR, chosen by the patient this time, could come later.

So let’s help our physicians explore our choices and preferences with us. They are the experts in medicine – and what it can and cannot do – but we are the experts in ourselves. We must reflect upon what is most important to us and share that information with our healthcare providers so, together, we can discuss how medicine may be put in service of helping us live the lives we want, until the end.