Hospice Has a Marketing Problem
January 5th, 2011

In early December GAP’s grandmother fell and broke her hip.  And in the past month she has been through reconstructive surgery, left the town where she lived for more than 90 years, and been moved into a nursing home in a city far from her home.  She’s been frail for a number of years, but all of these recent events have really taken a toll.  She’s tired.  She’s scared of further injury.  And she’s stressed and overwhelmed by the whirlwind that her life has become during the past month.  She misses her beloved husband who passed away several years ago.  And she’ll tell you she’s ready to die.  But when the subject of hospice care is raised she is adamantly against it.

Most people (not quite everyone, but close) believe that hospice is where you go to die; where you will be surrounded by other dying people; where you go when nothing can save you; where you go when prayers and painkillers are all that are left; doom incarnate.

But most people are wrong.  Hospice is not those things.  Hospice has a completely different problem.  The issue is not that hospice isn’t a worthwhile path to choose.  The issue is that hospice care has a marketing problem.

Unfortunately for patients and their families all of those beliefs are incorrect.  Further still, they are predicated on two incorrect assumptions.  The first is that hospice is, by definition, an actual place.  The second is that heroic life-saving measures are always in the best interest of the patient.

If you’ve never read the writing of Atul Gawande then you’re missing out.  Not “missing out” in the way that people usually mean it, like if you’d never read The Da Vinci Code or never seen Braveheart (I’m guilty of that second one…).  But missing out in a way that will enrich your mind and challenge your preconceptions.  Gawande is a surgeon at Brigham and Women’s Hospital in Boston, a professor at the Harvard schools of Public Health and Medicine, an author, and an occasional columnist for The New Yorker.  While I’m sure he is quite accomplished in each of his many roles, it is that last item on his résumé that got me into his fan club.

Much like Michael Lewis did for the financial crisis, Gawande diagrams the moving parts of the health care system in a way that makes them resonant and compelling, not to mention accessible to the lay reader.  His 2009 article on waste and abuse in the healthcare system garnered national attention, particularly given the then-current debate on health care reform in Washington.  And his 2010 article on hospice care left me in tears from its poignant truths and heart-wrenching anecdotes.

What Gawande spells out in his article is the truth about hospice.  He explains that hospice isn’t just another name for giving up.  It is about living with an illness, rather than curing it.  As the article explains:

“The difference between standard medical care and hospice is not the difference between treating and doing nothing… The difference [is] in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.”

Hospice is about keeping patients comfortable and happy and free from pain without delivering intervention care.  Patients can receive hospice care from nurses and social workers in their own homes.  They can be under hospice care for long periods of time before passing.  They can be removed from hospice care if their condition improves.  And some patients actually fare better under hospice care because they are free from the stress of surgical procedures and hospitalizations.

Gawande also points out in his article that we Americans are lousy at dying.  And we are lousy at letting people die.  Even as a doctor Gawande couldn’t bring himself to tell the family members of a patient whose organs had nearly all shut down that she was dying.  Because we’ve gotten so good at cheating death, we’ve become unwilling to submit to it, even when that is the right thing to do.

The problem with hospice is not hospice.  The problem with hospice is its reputation.  No one wants to choose hospice because they assume it means a sad and demoralizing end to a life that was once happy and vibrant.  But the truth of the matter is that few deaths are as demoralizing as those in an ICU.  Death while under hospice care can mean that your last days were spent happily.  It can mean that your last breaths were taken in your own home.  It can mean that you die as a person, instead of as a patient.

Gawande’s article on hospice is long and difficult to read at times.  But it is also one of the most important and valuable things I’ve read in the last year.  If you’ve made it this far in this post, I suspect you may agree with me.  You can read the article here.  I promise you that it’s worth it.

6 Responses to “Hospice Has a Marketing Problem”

  1. Lindsey Says:

    I love Gawande’s work and have read all of his books (I not-so-secretly wish I was a doctor). Thanks for calling him out here. xo

  2. Aidan Donnelley Rowley @ Ivy League Insecurities Says:

    Thanks for pointing the way. I plan to read the article. As someone who is unfortunately acquainted with hospice care, I am interested to hear more. Meaty post, Gale. Thank you.

  3. Cathy @ All I Want To Say Says:

    Wow Gale – Ten Dollar Thought for sure. Having just lived through my uncle’s quick demise from lung cancer, this story really hit home. We were fortunate that he signed a DNR just prior to his last hospital admittance because that allowed him to go “naturally”. It was a blessing.

    It seems that the crux of the issue is whether or not all parties involved (patient and his/her family) can accept death as the final result. Medical miracles and advancement in technology seem to make people question when enough is enough. Everyone wants to believe they will be the long tail. So how do you know?

    Tough, tough, tough choices. Thank you for making me think. And, you made me also remember my grandmother who recently passed who devoted 25 years of her life as a hospice volunteer. I have a little more insight into how she affected those she helped, and the constitution she exhibited in doing so.

  4. BigLittleWolf Says:

    You raise so many issues with this post, Gale, not the least of which is the American attitude toward dying. The political and economic repercussions, I realize, you didn’t even touch on – and I know you could.

    I can’t help but compare our attitude to what I’ve seen in Europe, where cycles of life and death find a place in a very different perspective. Of course, this is just one way in which cultural attitudes are different, along with family, work, appearance, measures of success – value systems in which age demographics don’t separate friends and family as they socialize, live together, and care for each other.

    As for the references you cite, I, too, will read and try to get through. These are critical issues that deal with our humanity, and factor into everything to do with our ailing society.

  5. TheKitchenWitch Says:

    I was never experienced with hospice care until my friend Mary Beth died. I was so incredibly impressed–literally blown away–by the tender, caring, empathetic treatment there. You are right–until you see it first hand, it seems like a grim proposition.

  6. Ten Dollar Thoughts » Blog Archive » I Will Wear Red Says:

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