Friday, October 2, 2015

Report on palliative care in US hospitals: glass 2/3 full or 1/3 empty?

by: Alex Smith, @alexsmithMD

The Center to Advance Palliative Care and the National Palliative Care Research Center just released their 2015 report card. Boy is there some great stuff in there!

The major point: two thirds (67%) of US hospitals with >50 beds report a palliative care program.  So is the glass two-thirds full, or one third empty?

There's more to this question than the big picture two-thirds one-third, however. I suggest you go check out your state's "Grade" for inpatient palliative care.  California, my home state, got a "B" as 74% of hospitals with >50 beds report a palliative care program.  Not bad.  The Northeast and Mountain regions have  palliative care in almost all hospitals.  The south, not so access to inpatient palliative care may be 2/3 across the country, but in some places you'll be hard pressed to find any palliative care at all.  Good luck finding palliative care if you get seriously ill in Mississippi, where only 29% of hospitals have palliative care services.

Further, if one looks at the trajectory of growth of palliative care, it seems to be slowing.  In the 2005 report card the rate was 53%, in 2005, then 63% in 2011, now 67% in 2015.  The rate has gone from almost 2% a year of growth down to 1% per year.  (some of these differences may be due to a more robust methodology in the most recent 2015 report- they actually called all hospitals and asked if they have a palliative care program, rather than relying on publicly reported data).

For profit-hospitals still lag way behind nonprofit and public hospitals in access to inpatient palliative care.  Only 23% of for profit hospitals with >50 beds report a palliative care program. That's pathetic.  What's the story there?  I don't get it.  The evidence is mounting that palliative care is not only great at improving quality of life for people with serious illness and their families, it saves money.  See this recent study in the Journal of Clinical Oncology that piles more evidence on that mountain, showing that the earlier the consult in relation to admission, the greater the cost savings.  Shouldn't the for-profit hospitals be all over this???

I think overall we can feel pretty good about the state of progress for inpatient palliative care.  As the main study authors, Diane Meier and Sean Morrison note, the greatest need is no longer on the inpatient side.  It's in the outpatient arena, where people with serious illness spend the vast majority of time, yet access to palliative care services is rudimentary, limited to hospice, or nonexistent in most of the country.

One more thing - I love the coupling of the report with actionable policy recommendations for congress, the funders of research NIH/PCORI/CMMI/AHRQ.  My favorites:
  • Establish palliative care awards for palliative care in medicine, nursing, social work, and chaplaincy.
  • Set aside more Graduate Medical Education (GME) slots for palliative care training.
  • Establish a Center for Scientific Review (CSR) study section on serious illness.  CSR reviews grants for the NIH.
 So much to read - have a look!


Christopher Langston said...

Thanks for sharing Alex. In addition to the change in reporting methodology, I think they've also been shifting the hospital size frame - from 200 or more beds now down to 50. I see in the report that 90% hospitals with 300 or more beds report having a palliative care service.

But I wonder about the recommendations. They seem too carrot and not enough stick to me. Why shouldn't having a palliative care service be a condition of participation in Medicare? The conditions of participation set requirements for structural elements like( including having radiology services, lab services, discharge planning, and pharmacy. They also define structural elements for optional services like surgery that I'm sure most hospitals are highly motivated to meet.

Call me crazy, but given the health status of the Medicare population on average, I think an addition to the CoP would be reasonable. It is also important that palliative care stop being cross subsidized by reductions in length of stay and intensity of services, as those earned "savings" are going to be ratcheted down and down anyway.

Michael said...

CAPC has once again done an amazing job creating an accurate appraisal and coupling it with a powerful Call-to-Action for the field of Palliative Care. So much ground has been gained in the last decade and our field enjoys continued growth in acceptance and traction with the public. However, in the face of such growth in demand for the kind of value brought by well-resourced interdisciplinary teams and the exploding demographics on the path ahead, the mismatch of demand to access is profound. Not only is it felt acutely by people with serious illness in need, those of us deeply dedicated to providing this kind of inspired care on the ground are hurting now and will be hurting worse. Missing data from the Report Card is variable and often extremely inadequate staffing of palliative care programs, the extent to which programs are not able to keep up with need, and the exaggerated deficiencies in rural America.

We must begin to courageously think "outside the box". There is more to sustainable solutions than the Triple Aim of quality of life and satisfaction for people with illness and their families leading lower costs. We must become increasingly mindful of the people providing the care. We must modify or replace the current structures of healthcare delivery to reflect new architecture that insures the quality of life and satisfaction of this scarce and extraordinary resource of palliative care nurses, social workers, spiritual counselors, and doctors. The well-being of too often burned out professional caregivers is no more or less important than the well-being of those we serve, and yet we are driven beyond balance. We are driven by our employers and we are driven by our difficulty to look past the suffering that our current system of healthcare inflicts, let alone the simple challenge of serious illness and dying.

Value based payment models will help only payments are sufficient to support interdisciplinary teams with the time and space to support people with illness to define value and goals on there own terms. Palliative care is simply people caring for people with the time needed to apply an approach that invites folks to become or remain empowered. New structures of delivery, such as telemedicine, and new architectures of employment, such as what we are doing at , are small examples of the kind of innovation and activism that is possible in our field. The future of healthcare may rest on the case we make with society defining sustainability and sanity in the care of of people with serious illness and approaching death. Thanks to the pioneers that have gotten us here and to the many among us now that have a clear sense of what's possible for the people under our care AND for our own families.

Joanne Lynn said...

Alex – if you believe, as I do, that much of palliative care must be in the practice purview of internists and familiy practitioners (and nurse practitioners, etc) – indeed, in the practice expertise of virtually all clinicians who work with patients living with serious illnesses – then, wouldn’t the phrasing of today’s GeriPal be a little different? For example, rather than “but in some places you'll be hard pressed to find any palliative care at all” – you’d say “but in some places you'll be hard pressed to find any specialist palliative care at all” or “but in some places you'll be hard pressed to find any palliative care programs at all.” Another example: rather than “It's in the outpatient arena, where people with serious illness spend the vast majority of time, yet access to palliative care services is rudimentary, limited to hospice, or nonexistent in most of the country.” You might say “It's in the outpatient arena, where people with serious illness spend the vast majority of time, yet access to specialist palliative care services is rudimentary, limited to hospice, or nonexistent in most of the country.” It seems a bit arrogant to presume that palliative care is unavailable just because there is no named program to provide it. You would not say that of cardiology – indeed, cardiology services would likely be present even without a cardiologist, since we expect that most cardiology services are within the ambit of internists, backed up by referrals out of area when necessary. (There may be no areas in the US without a cardiologist, but that’s a dynamic of our payment system also!)

I’d also be concerned with the claim that palliative care specialists are particularly skilled in serving persons living with serious illness outside of the hospitals. It seems that very few programs yet are training palliative care specialists in nursing homes or home care, and only the programs associated with geriatrics programs are teaching even the basics of dementia care. Palliative care specialists as we have them now are probably very helpful in oncology patients throughout their care, but our training programs have not shown that our trainees are skilled at the challenges of frailty and multiple chronic conditions in old age, which is the dominant pathway through advanced illness to death.

What do you think on these concerns?


Joanne Lynn, MD
Director, Center for Elder Care and Advanced Illness
Altarum Institute

Alex Smith said...

Thanks Chris, Michael, and Joanne for your thoughtful comments.

Chris - asking that palliative care be part of the Medicare Conditions of Participation would be a bold move, even in the "optional" category. Has anyone looked into what it takes to change these Medicare regulations? Would this require an act of congress, or can the Centers for Medicare and Medicaid make such a change on their own?

Michael - I appreciate the "on-the-ground" front line perspective of a rural palliative care provider. We need more voices like yours in the conversation. Still, the researcher in me cannot help but ask for the data. Outside of compelling stories, is there evidence of an epidemic of burnout among rural palliative care providers? Evidence would go a long way toward convincing people of the scope and magnitude of the issue.

Joanne - Thank you for emphasizing the importance of language and specificity about "specialist palliative care" vs. "palliative care." Yet I cannot help but feel that if you said "there's no cardiology in this region of Nevada" people would assume you meant no cardiologist, not that the primary care doctors in Nevada knew nothing about the heart.

It's the second part of your comment Joanne that is concerning to the field of palliative medicine. On the one hand, palliative care certainly has developed out of the cancer model, and the level of evidence and expertise in cancer exceeds that of all other conditions. There is a tremendous need to figure out how to meet the needs of seriously ill people with illnesses other than cancer. Many of those needs, particularly for the frail elderly, may be more in the social sphere, as you've pointed out previously, such as housing, food, and physical assistance.

On the other hand, I do feel that palliative care has developed to the point where we have something important to offer people with conditions other than cancer. This is anecdotal, but I do feel our multidisciplinary palliative care service has offered good value in terms of symptom relief, communication, caregiver support and assistance with transitions of care for older adults with dementia, disability, multi morbidity, heart failure, ALS, and COPD. How are we doing on the outpatient side? Not as sure - perhaps others can chime in, like Christine Ritchie. Certainly palliative care can and should partner with others in the outpatient setting - people in home care, geriatrics, nursing homes, and primary care have been attending to these issues far longer than we have in palliative medicine.

I'd love to look into the evidence on this, if there is any. What value does outpatient palliate care bring to people with conditions associated with old age? A ripe topic for study!

Chris said...

I think personally, the data of the growth of palliative since 2005 makes sense. The big confounding piece of information left out is the fact that the supply has now been limited despite the growing demand. It was right within that mentioned time period that they got rid of the process for physicians to be able to "Grandfather" into Palliative and now require everyone to finish fellowship in order to become eligible to sit for boards and be certified. With such a limited number of fellowship spots nationwide, and an already increasing demand, it makes sense that the growth has slowed. If you don't have personnel, you simply cannot have a program, period.

Diane Meier said...

Thanks Alex, for your post on the report card. I want to point out that once you get to the point where >90% of large hospitals and 67% of those with > 50 beds have a team --> the result is that in 2014 more than 75% of all hospitalized patients get care in a hospital with a palliative care team. While it would be nice if even the laggards and late adopters (small hospitals, for profit hospitals) got on board, in my view we have passed the tipping point with respect to prevalence of palliative care teams. The issue now is penetration, or the ability of these teams to actually reach the 10-20% of hospitalized patients who need palliative care. Based on our recent Registry report ( , mean penetration in participating U.S. hospitals with palliative care teams is about 4%, ranging from 1% to over 20%. We all know that most of the patients in need of palliative care in our hospitals don't get it because there is no standardization of access- we still wait for the attending MD to call us in. A perfect recipe for variability and low quality.
The bigger challenge is access to palliative care outside of hospitals- at home, in AL, in NHs, in office practices. There is no possibility that there will ever be enough palliative care specialty trained clinicians to meet the need for these skills- the only solution is massive training of every clinician in the core principles and practices of palliative care- all the stuff that was not (and is still not) adequately taught in our medical and nursing schools and residencies. Competent and safe pain and symptom management. Expert communication about what matters most. Ability to assess and support family caregivers. Ability to reliably coordinate care across settings and over time. Clinicians practice as we are trained and we are still being trained as if the only care setting that matters is the hospital.
And Chris- I have been pushing CMS on the topic of requiring palliative care services meeting quality standards as a Condition of Participation for hospitals for more than 5 years. They laugh at me. The political opposition is the hospital industry.