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News and Narratives of Interest – 2016

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.


News and Narratives of Interest – 2015 (#2)

Remember “death panels,” the term Sarah Palin famously coined during debates over the then proposed Affordable Care Act.  In 2009, the section of that Act (section 1233) that would have paid physicians for providing counseling about advance directives to Medicare patients was dropped as a result of the furor over what has been called the “death panel myth.”  Thus, while many doctors voluntarily provide this counseling without charge and without reimbursement, most do not.  Already strapped for time, and reluctant to broach topics related to death and dying, doctors have opted to forgo these conversations.

Happily, there are signs of change on the horizon.  Most significantly, perhaps, Medicare announced in early July 2015 that, beginning in January 2016, it will reimburse doctors, nurse practitioners, physician assistants, and other qualified providers for time spent counseling patients about advance care planning.  In other “News and Narratives” articles we have written about how difficult physicians—and patients—find these conversations, and reimbursement for counseling time will not magically open up these frank discussions, but removing the financial barriers is necessary, if not sufficient, to change the culture of silence around our end of life choices and wishes. …READ MORE…

News and Narratives of Interest – 2015 (#1)

Some days I think I am an optimist—about death and dying.  I know that sounds like a contradiction, but my optimism reflects what appears to be a culture shift taking place, a land mass moving right under our feet.  Now I may indeed live in a rarified environment, one in which people talk about death and dying, discuss having the “conversation” about treatment choices at the end of life, celebrate the spread of palliative care, and, in my case, teach courses on memoir and literature around death, dying, and caregiving.  But really, there are signs that the ground is shifting all around us.

In our last “News and Narratives” column we mentioned Atul Gawande’s Ariadne Labs, and the checklist being developed to help physicians have the difficult conversations with patients and families around advance care planning.  Since our last column, Gawande’s book Being Mortal has been published to great critical acclaim, but rather than languishing on the bookshelves populated by experts in “the field,” Being Mortal is now #5 on the New York Times bestseller non-fiction list. You can read the reviews on your own, or, better yet, read the book, and you can also watch the PBS Frontline based on the book and featuring Gawande.  Gawande’s focus is really on how we can live the life we choose during the end of our lives.  He shares his father’s own decisions at the end of life, and looks at some hopeful signs of change as well as some difficult challenges. …READ MORE…

News and Narratives of Interest – 2014

When my 85-year old father took himself off dialysis and decided his multiple advanced terminal illnesses were sending him a message, his elite teaching hospital sent us to a large hospice organization in the region. Almost immediately we realized we were getting stock answers to our questions, and began to question whether our father, and our family, would get personalized care. We contacted a smaller hospice organization that saw us through the weeks ahead with compassion and care.

A recent “New Old Age” blog by Paula Span reminded me of a difficult question many of us have to face—and provided some guidance, if not quite answers. “How to Choose a Hospice” is the question at hand; and interviewee Naomi Naierman, founding president and CEO of the American Hospice Foundation (closing for lack of funding), has some important suggestions. Families and patients should know that in most localities there is a choice among hospices. Hospice care is no longer always delivered by local non-profit organizations: More often hospices are run by large for profit corporations—and not all hospices put the patient and family before the bottom line. This interview with Naierman offers great questions to ask of hospices and even more are included in Naierman’s guide, “Choosing a Hospice: 16 Questions to Ask.” …READ MORE…

News and Narratives of Interest-Fall 2013

News and Narratives of Interest – Fall 2013

Every once in a while you come across an article that makes you think:  Ok, I can stop right here.  “End of Life Tech Companies Grow with Changes in Death Traditions”in a June 2013 issue of The Huffington Post is just that article.  It will give you a great review of new web-based end of life information and planning resources.  Yes, you still need to help you access resources and information specific to Westchester County, but in combination with these other sites, you will be all set. is a new website, a project of the Westchester End-of-Life Coalition.  It is a unique tool for Westchester residents.  It shows how to prepare in advance for serious health care issues and guides you through steps that can be taken in case you are diagnosed and living with a serious illness; it also helps you cope with issues around the death of family member. …READ MORE…

News & Narratives of Interest – Feb 2013

News and Narratives of Interest-Feb 2013

An article in the fall 2012 issue of the Health Advocacy Bulletin, The Journal of the Health Advocacy Program at Sarah Lawrence College, by Vicki Breitbart, Director of the Program and one of WELC’s Advisory Board Members, addresses a situation experienced by many of us as caregivers for elderly parents.

Vicki’s mother, age 93 and living independently, began to steadily decline, losing sight, hearing, and mobility.  When she was admitted to the hospital for surgery, the downward spiral was accelerated by a cascade of interventions, poor communication, uncoordinated care, and challenges to her agency.  “With all my knowledge about the health care system, we still were caught in the irrational, uncoordinated and often chaotic care for the elderly ill and dying,” writes Vicki. …READ MORE…