Articles and News
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…
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
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 LiveWithCare.org to help you access resources and information specific to Westchester County, but in combination with these other sites, you will be all set.
LiveWithCare.org 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 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…
By JOSEPH SACCO, M.D.
The family seated opposite me is tense. Having met at the bedside of a critically ill patient only moments earlier, we have gathered in a quiet alcove next to the intensive care unit to discuss what can only be bad news.
The patient — someone’s spouse, parent, child — is dying. As a palliative care specialist, I am to explain this with clarity and empathy and elicit an informed decision about what to do next.
This encounter has come after days, weeks or even months of terrible emotional and physical anguish, avalanches of bewildering, conflicting information and opinion, hopes raised and lost, and long vigils in the family waiting area. Now, it is the opinion of the I.C.U. staff that survival is no longer an option, and I share this opinion. …READ MORE…
By David C. Leven and Mary Beth Morrissey
In February a new patient’s rights law, the Palliative Care Information Act, became effective in New York. Terminally ill patients now have the right to receive information and counseling regarding palliative care and end-of-life options. Many of us, when terminally ill, will no longer have decision-making capacity and will not be able to make decisions about those options. What if we have not appointed a health care agent to make decisions for us and no one knows what treatment we would want or not want? Would decisions be made for us contrary to what we would have decided?
Too many times we have heard, and you may have as well, stories about people no longer able to make health care decisions for themselves, suffering terribly at the end of their lives, and being kept alive on machines because no one knew their health care wishes. Many of us have in fact considered our end-of-life treatment preferences and, of course, expect and want them to be honored. Still, only about 30 percent of us have communicated these preferences to loved ones or our doctors and have actually appointed a health care agent to make health care decisions if we lose decision-making capacity. The time to appoint a trusted person to make these decisions for us and to have conversations with our loved ones and doctors about our goals of care is now, while we are healthy. This is a gift to our loved ones and ourselves.
READ FULL ARTICLE: The_Journal_News_HCP_41611
The Family Health Care Decisions Act establishes the authority of a patient’s family member or close friend to make health care decisions for the patient in cases where a patient lacks decisional capacity and did not leave prior instructions or appoint a health care agent. The family member or close friend’s decision making authority would include the authority to direct the withdrawal or withholding of life-sustaining treatment when standards set forth in the statute are satisfied.