News and Narratives of Interest-Fall 2013

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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.

But, before you leave The Huffington Post site, check out Dr. Richard Besdine’s terrific piece about palliative care and misconceptions about the field.  As a tantalizing preview, here are the five misconceptions in brief:

  1. If you accept palliative care, you must stop treatment.
  2. Palliative care is the same as hospice.
  3. Electing palliative care means you are giving up.
  4. Palliative care shortens life expectancy.
  5. There isn’t need for palliative care because my doctor will address pain anyway.

Sound familiar?  And Besdine, Medical Officer for the American Federation for Aging Research (AFAR) then does a great job of explaining what palliative care actually is, and why we want to make sure it is available to everyone with a serious or terminal illness.

In fall 2013 WELC is starting a new initiative focused on conversations about death and dying.  Oh yes, we have heard that this is not everyone’s favorite topic, but there are clues that the oft assumed aversion to discussing death is at least exaggerated—and possibly is more myth than reality.  Consider, for example, these two stories about people who discuss death at social gatherings.  According to a June 2013 article in The New York Times, there are “death cafes” that have sprung up in almost 40 cities in the US, just social gatherings—salons of a form—that discuss death and dying.  They are not support or grieving groups, but rather informal gatherings of people who find the subject of the end of life as interesting as they might find, say, the topic of global warming or childrearing.

For those who are looking for more substantial food than coffee, and more personal conversation than philosophical, the University of Washington Communication Leadership Project launched the “Let’s Have Dinner and Talk about Death” project, a division of the non-profit organization Engage With Grace.  This project takes some time to navigate, but make sure you access these great resources on their open syllabus and have your own dinners and discussions.

We all still do worry, however, about how–even after we have had these discussions, even after we have had “the conversation” about our wishes at the end of life, even after we have completed advance directives, and even if these advance directives include physician orders (as in POLST or MOLST forms) that “legitimize” our wishes–we confront a situation in which these wishes are not honored.  A close friend called me last month in a panic because her 93 year old mother, who had appointed my friend as her health care agent, had completed a MOLST form, and was totally clear in conversations with her daughter, was hospitalized for a probable stroke and hydrated against the clear instructions of all of these advance directives.  A recent GeriPal (a geriatrics and palliative care blog) piece on advance directives and the elderly asks this very provocative question:  Should the failure to follow end-of-life preferences be considered a medical error? The study cited in this blog noted that “more than two-thirds of patients’ preferences were either not documented at all or documented incorrectly in the medical record.” (underlined in original)

A related, and very common, situation occurs when our loved one has made her wishes clear, but we as family caregivers still have to make excruciatingly difficult judgment calls in order to try to honor these wishes.  Charles Orenstein, a health journalist who has written frequently about end of life care, found himself in this situation as his family struggled to make a decision regarding his mother’s prognosis:  was her neurological functioning, her brain functioning, so impaired that she would not have wished to continue living, and how would they know?  Orenstein says his family’s experience changed his thinking about end of life care.  It may not change yours, but it will complicate the picture.

And, finally, for this News and Narrative “round up,” an update on how a cancer center in Seattle has implemented Washington State’s “Death with Dignity” law.  In April 2013 WELC, together with Compassion & Choices of New York and the Health Advocacy Program at Sarah Lawrence College, hosted a panel discussion about assisted dying in America, focusing on the experience of Oregon in the 15 years since the “Death with Dignity” Act legalized physician-assisted dying.  For those of you who are interested in drilling down to what a death with dignity program would look like at one cancer center, the experience of the Seattle Cancer Care Alliance reported in an April issue of the NEJM will be of interest.  A summary is available to non-subscribers.

 

For a copy of this article:  News and Narratives of Interest-Fall 2013