The Hospice Times They Are A-Changin….

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

Introduction

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.

Anomalies

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.

By | 2017-05-17T09:21:53+00:00 February 15th, 2015|6 Comments

About the Author:

Heather Wilson, PhD, CHC, is the Founder of Weatherbee Resources, Inc. You can reach Heather at hwilson@weatherbee.net or 508.778.0008

6 Comments

  1. Joan Millet February 15, 2015 at 9:41 PM

    From my perspective, I believe the "almighty dollar" is ruling much of all healthcare. My experience has been that their are fears of not being covered and/or of losing money that has superseded the compassion & quality of care that was there when there was less regulation & oversight. The truth is that there is a big need for less costly but more compassionate quality care than ever before as there is a larger elder population & many without family primary caretakers. I believe that we all have to get busy with improving processes which will decrease costs & focus on what our patients need.

  2. Tino Plank February 16, 2015 at 8:30 PM

    I think we need to be keenly aware of, and responsive to, the shifting paradigm. As hospice angels I think we became too enamored of our own sense of importance. In doing so, we neglected to embrace quality measures that might have validated the good work we thought we were doing. We fostered a notion of being the experts in death and dying despite largely serving only a partial demographic of our culturally diverse nation.

    We can no longer assume the title of angels without having that being called into question. We now live in an era of increasingly normalized political and social polarization. Being dependent on federal reimbursement, we should expect increasing challenges to payment models that arent supported by data demonstrating the value of what we provide.

    My hope is that hospice can remain relevant in the shifting paradigm. However, our relevance will be largely determined by the patients and families that we care for. To that end, a positive experience of hospice should never be an anomaly.

  3. Todd D. Smith February 17, 2015 at 2:18 PM

    It is my hope that compassionate care NEVER take a back seat to profitability (for either profit OR non-profit hospices. let’s face it, non-profits make money too). That being said, I came to this industry about four years ago from corporate america. This entire paradigm shift is one that should have been expected years ago. Gone are the days when the government is willing to give you a billion dollars and not want some system of accountability as to how it’s being spent. If you try to run a business (again either for-profit or not-for-profit) you have to be keenly aware as to where the money is being spent and if it is being spent and allocated properly. If not, changes must be made or you will be forced to close your doors.

    This isn’t a "hospice" issue. This is an "abuse" issue. For years, all of these hospice companies received billions with no real guidelines on how to spend it and, quite frankly, it didn’t seem like the government cared where it was being spent. In my experience, the only time the government sits up and takes notice is when there is a monetary abuse issue. And that is what’s causing this paradigm shift today. Everyone seems to be having an issue with the new cost reporting guidelines. Why? The government is giving you this money so why shouldn’t you be held accountable for where it’s being spent?

    One of the wonderful collateral results of these new rules and regulations will be this; we will separate the wheat from the chaff. The companies who came into this industry with dollar signs in their eyes and complete disregard for quality care, will be gone. Only those of us who truly have a heart for hospice will be willing to take this challenge head on and prevail.

    I guess my bottom line on this whole thing is; this change should have happened years ago. Now that it’s here, let’s all use this opportunity to look inward and really challenge ourselves to provide the absolute best possible care, support, and education we can for our patients and their loved ones. The author, Tom Wolfe, wrote a book years ago called "Thriving On Chaos." The premise behind it was that, in corporate america, there is always change and chaos. You, as a company can either embrace it, or run from it. We here at Promise Hospice choose to embrace this chaos and I am confident that our patients and their families will experience a more satisfying and more fulfilling hospice journey because of it.

  4. Chris Zinn February 17, 2015 at 3:17 PM

    I am in a CON state with many non-profit community-based and mission driven hospices and the public trusts these hospices to deliver excellent care. One of the dilemmas I see in this new paradigm is that to remain in business, so many more resources have to go into compliance and billing, as you said. with increasing costs and shrinking reimbursement, the definition of what constitutes palliative care is threatened and there is an inevitable reluctance to provide more expensive therapies. With the case-by-case approach of relatedness, hospices differ in what they cover and that can be very confusing to the public. I hope that in 5-10 years there will be concurrent care so that more cancer patients can transition more smoothly into hospice. Also, I would like to see guidelines on what palliative treatments should be covered by hospices. In 10 years time, I hope the 6-month regulation has been replaced by a needs-based benefit. Dame Cicely Saunders, the founder of the modern hospice movement, allowed earlier access and although patients had predominantly cancer diagnoses, many ALS patients were supported. CGS has been denying payment for care of longer stay patients when "needs are primarily custodial" and "no evidence of decline," but in the future we need to recognize that the trajectory may have periods of stability for non-malignant diagnoses and this does not mean they are not terminally ill.

  5. Jeff Lycan, RN, MS February 19, 2015 at 1:23 PM

    Heather, you are asking some fundamental questions that hopefully are catalyst for your readers’ critical thinking skills. Its hard to read these questions and not form opinions about how or what has gone "wrong." However, I would go further and ask "what is the value" hospice brings to the health care system? I think this is critical to consider due to the population we serve. In my 30 plus years dealing with individuals facing death as a likely outcome the value of having someone or entity understand this journey places practitioners working in end of life in a position unlike other health care providers.

    Values of course refer to the desirable goals people strive to attain. Values are abstract goals that come into play and is fundamental to the consideration of the environment that hospices try to bring to those they serve. The obtainment of value based goals by an individual are difficult to measure just as they are often difficult to obtain. However, the evaluation of actions, policies, people, and events give one an indication whether or not a provider is meeting quality outcomes for the individuals and community they serve. Perhaps in our response to change we are rushing to measure criteria based upon standards of care but not really the individual response and outcome based upon the care provided.

    I think what we are leaving out of the paradigm shift is the value structure of the relationship between the dying and their environment and those health care entities serving this population. Many will read and think that the description above is the basic construct of hospice. I believe it is and always has been. So while the HIS and other "measures" CMS has coming down the line reflect medical and clinical parameters, the "measures" I want to focus on developing is around the value constructs of the relationship and meeting those individual goals of care and how to communicate that to payers and the public.

    One thing that should be considered by CMS, MedPAC, Congress, the OIG and others is their response to the grievances and "fraudulent" activities that they unmask.
    – First, a more measured response should be implemented that addresses the need for added scrutiny around those outliers being "abused" vs. taking sweeping broad changes that cause greater damage to a certain incorporated group of providers more so than others.
    – Second, the response taken by government entities should not implement barriers to access to care for individuals that are dying, the terminally ill. If anything efforts should be undertaken to make sure the terminally ill have move access to end of life care vs. less.
    – Third, and for the sake of ending my musings, the hospice industry should take charge in being transparent, developing and reporting measures that reflect value based outcomes, and at the very least come up with the parameters to help the public choose a quality hospice provider.

    As Mahatma Gandhi said, Be the change that you wish to see in the world." Let’s respond to change and shape the new paradigm vs. being shaped by it.

    Jeff Lycan, RN, MS
    VP for Mission Advocacy, Ohio’s Hospice

  6. Heather Wilson, PhD March 10, 2015 at 3:35 PM

    I am very grateful for the thought provoking comments that this blog post generated as well as the many emails I received from colleagues across the country sharing their thoughts on this "paradigm shift." I am very much looking forward to the continuing "conversation" and participating in the collective wisdom of those who also care deeply about what is happening and where we are headed.

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