Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone
If your time to you is worth savin’
Then you better start swimmin’
or you’ll sink like a stone
For the times they are a-changin’    

Bob Dylan


One of my favorite nuns in high school often called me “bold” (a frequent nun term) and accused me of taking too much pleasure in “starting revolutions.”  For this blog post, allow me to be bold and describe a revolution I see occurring in the hospice industry.  I did not start it, I don’t take pleasure in it – but I want to name it. To explain what I am thinking about, let me use a framework loosely adapted from Thomas Kuhn’s seminal work, The Structure of Scientific Revolutions.  Despite later critiques and expansion of Kuhn’s theory, as well as the overuse if not abuse of the term “paradigm shift,” I find his description of how science evolves to be a useful framework for understanding how change occurs.

Briefly, it is like this: there is an existing (or old) paradigm that is basically the commonly accepted world view, the status quo, the way things are.  Then, gradually, or all of a sudden, there are anomalies – things that occur that challenge the existing paradigm. The anomalies can cause a crisis or a revolution to occur – with some people defending the existing paradigm and others seeking to embrace a new paradigm that may be emerging.  (And there are likely still others who are oblivious to the whole thing going on :). Depending upon the strength of the existing paradigms or the strength of the anomalies, the status quo is maintained or there is a paradigm shift and a new paradigm emerges. Thank you for bearing with me.  Now let’s look at what this has to do with the hospice industry.

The Old (Existing) Hospice Paradigm

We have a unique, much loved and revered history.  The hospice movement was volunteer and community-based, mission-driven, not-for-profit and holistic.  Some snarkily refer to these as the granola bar, Birkenstock days, but they were heady times as hospice made tentative steps toward the mainstream with the promulgation of the Medicare Hospice Benefit.  As the hospice “movement” grew and gradually, if reluctantly, became accepted as an “industry,” it was nevertheless an industry that continued to be revered.  Hospice workers are/were generally seen as “angels of mercy,” a “Godsend,” and the most frequently heard family comment is/was, “Why didn’t we come to hospice sooner?” Hospices rejoiced at being allowed to increase access to patients in nursing homes and bemoaned the short lengths of stay that did not allow patients and their loved ones to reap the full benefits of hospice care. In the beginning, hospice regulations seemed optional, but then, gradually, especially with the “new CoPs” in 2008 and the increase in ADRs and payment scrutiny, regulations have been taken more seriously.  But it was/is all, for the most part, good.


We could say that the first anomaly to challenge the hospice paradigm was Operation Restore Trust back in the 90s. But that was merely a blip compared to now. Let’s consider the following recent anomalies:

Crisis / Revolution

Wasn’t that depressing?  Yes, it is, but it is much more than that.  I believe these recent anomalies have precipitated a crisis/revolution that challenges the existing/old hospice paradigm and is calling for a new paradigm to emerge or indicating that, in fact, it already has. At the risk of being too simplistic, here is what we have been hearing about the anomalies noted above:

  1. “We just need more oversight and transparency.  Some hospices have not been surveyed for 10 years.  Oh yay! Now we have the IMPACT Act which will increase survey frequency to every three years.  Everything will be ok.  Let’s focus on survey readiness.”
  2. “It is those darn for-profits. If it weren’t for them running hospices like a business and focusing on margins instead of mission we would not be in this mess. We should report them and get them in trouble.”
  3. “That journalist writing all those horrible articles is just trying to win a prize.”

I hate to be rude (or a revolutionary), but the IMPACT Act ain’t gonna have much impact (see my previous blog post on this). And while a significant number of for-profits have been cited for quality concerns, they can’t be blamed for the quality issues raised by regulators and family members served by a significant number of not-for-profit hospices. And, also, the for-profits are part of the new paradigm and they are here to stay, so let’s get over it.

The questions I want to consider and that I do not hear much about include:  What are these anomalies telling us?  What can we learn from them?  How are we being challenged? Are we already in a new paradigm and don’t know it/won’t accept it?  If a new paradigm is emerging, what does it look like, and how different is it from what we have known? Has the quality of hospice care really deteriorated? How widespread is consumer dissatisfaction with hospice? Are the quality measures currently used by hospices (for example, in the Hospice Item Set) helping at all to improve the quality of care provided by hospices?  What will the hospice industry look like in 5-10 years and will whatever it looks like be by default or directed by those who have embraced the new paradigm? I don’t know the answer to those questions.  I have some thoughts about them but no definitive answers.

I am worried about the variability in the quality of care provided by hospices (both for-profit and not-for-profit).  I am worried that public trust in hospice is eroding. I am worried that the emphasis on survey readiness shifts focus and resources away from performance improvement to avoiding punishment.  I am worried that many hospices, both for-profit and not-for-profit, may not actually know how to do “the right things right” or, worse, even know what the right things are. Kuhn says that change is inhibited by the lack of freedom to question, as well as the unwillingness to experience the discomfort of living in the tension between two paradigms.

I believe we need to question and we need to have open, far-reaching conversations that do not include defensiveness or finger-pointing. We need to authentically face the challenges of the anomalies and focus on improving the quality of care provided by all hospices and determine what needs to be done to regain public trust. Anybody out there?

Posted by Heather P. Wilson, PhD, CHC –  CEO, Weatherbee Resources, Inc.