Tuesday, December 7, 2010

Celebrities, Illness and Hospice

As our country mourns the death of Elizabeth Edwards who died today, many are recalling her legacy of health care reform and advocacy for hospice.  She was named NHPCO's 2009 Person of the Year. Her writing and her advocacy focused on bringing the humanity back to patients.  I was particularly struck by a blog post she wrote about the death of political commentator and Bush press secretary Tony Snow.  Despite being on opposite sides of the spectrum of American politics, they struck up a friendship as Edwards writes:

"We each chose to reach for something larger than the life and body with which we were saddled when we kept our course after the last diagnoses. We did it because we thought it was important and because (although it is chic to say that one detests politics) we actually loved the give and take it, the struggle to find what you think is right and the imperative to make others understand and agree. But what, in the end, does it tell us about what we each found to be really important? I am guessing it is not school vouchers or the expensing of stock options or class action lawsuits about salacious material in video games."

Any news hound will also realize that it was only yesterday, a day before she died, when it was formally announced that after a recent admission to the hospital, Edwards (with the advice of her doctors) would be forgoing any 'anti-cancer treatments.'  When I first heard the news yesterday about Edwards forgoing anti-cancer treatments, I casually wondered if there would be much discussion about palliative care or hospice.  I will tell you this is something I find hard to stop myself from thinking about given my interest in how hospice, palliative medicine, prognostication and medical decision making is portrayed and communicated in the news and entertainment media.  So my question to all of you is: Is this something you have wondered yourself too?

Now this is much different that wishing or hoping that someone does poorly or dies, that is not what I am talking about at all.  That is plain wrong.

I felt somewhat validated when I saw conversation on a different social media site about how this was a public example of a common challenge seen in hospice and palliative care: late utilization of the hospice benefit.  Someone mentioned we should capitalize on this story to highlight this challenge, which I do not think is appropriate, but I wanted to give a forum for rational discussion about this rarely discussed but (probably) often thought about topic for our community.

I'll leave with a quote from Edwards:

"Hospice and palliative care professionals support and care for people at a time when hope can be hard to find.  The professionals of NHPCO know more than I will ever know about providing that care; I know more than I wish I knew about receiving it and I am happy to share my perspective with them.”

NOTE: Eleanor Clift writes about hospice and Elizabeth Edwards here.

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