Articles and News
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.”
One question we did not see on this list is the “bounce” question. Paula Span herself, in her New Old Age blog post this winter, reported that from one-fifth to one-third of patients are discharged alive from hospice each year—and the number is rising. Yes, one-third of those discharged are patient decisions to leave; but two-thirds are hospice decisions. If a patient is not losing ground—if the illness is not getting worse, even if the patient’s health is not improving, the patient can, and should, according to Medicare regulations, be discharged. This is a sad irony given evidence that patients in hospice care often do better than those without hospice care. And all caregivers know that patients at the end of life have a varied course of illness progression—sometimes improving and sometimes declining. Hospices can monitor a patient’s illness course in many different ways, and it is likely, that some hospices are readier to “bounce” than others. It would be well to ask a hospice, “What is your rate of hospice initiated discharge?”
Naierman and her colleagues at the American Hospice Foundation understand that we all need help in formulating the questions that will best elicit information we need. This is especially true if we are trying to have a difficult conversation, to really understand someone else’s experience, beliefs, and preferences. Physician and medical anthropologist Arthur Kleinman recognized this in 1978 when he formulated his now classic eight (8) questions that would help clinicians understand illness from the cultural perspective of the patient. Now Atul Gawande, surgeon and writer, has formulated a question-based guide for doctors who find it difficult to have conversations with patients who are experiencing illness that could possibly result in death within the next year. The Ariadne Labs project is now training physicians in order to test the effectiveness of this approach. We hope these questions prove an effective way for reluctant physicians to have these important end-of-life conversations with patients and families. They may, if turned around, be a way for patients to approach the conversation with physicians. They are not yet published, but we will keep you posted.
Meanwhile, as physicians struggle to have conversations about death and dying with patients, it seems that patients, families, caregivers—and everyone else—are having these conversations without them, connecting with each other, in every way possible. When NPR host Scott Simon tweeted from a week-long bedside vigil with his dying mother, well over one million people followed his tweets, and The New Yorker, The Huffington Post, and The Atlantic all wrote articles about “tweeting death.” Social media, the ultimate distancing through virtual intimacy, has captured our cultural shift toward knowing death and dying, toward connecting with the end of life, our own and others.
And to end this eclectic review of what is new and of interest, let’s turn to a perfect medium for ending, a graphic novel by The New Yorker cartoonist Roz Chast. Can’t We Talk about Something More Pleasant is Chast’s book-length comic about the last years of her parents’ lives. You may have read the excerpt in The New Yorker last winter. If so, you know you are in for a real treat. Gentle humor, sharp insight, real Brooklyn dialogue, and great drawings keep us smiling and nodding even as we recognize the complexity of caregiving, the struggle of the fiercely independent elderly to maintain their independence, and the simple sadness of losing parents at any time of life. Enjoy!
A PDF copy of this post: News and Narratives of Interest-Summer 2014
THANK YOU to all who participated in making this year’s National Healthcare Decisions Day a great success!
National Healthcare Decisions Day (NHDD) is a national day set aside to encourage individuals age 18 or older to have family discussions about personal values and beliefs, to choose a spokesperson, and to complete a Health Care Proxy. Volunteers from WELC were available in many Westchester Public Libraries to provide information and assistance for NHDD on April 16.
Learn more about the New York State Health Care Proxy and download a form.
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.