Clinical data registries (CDRs) have the potential to demonstrate value and drive measure development within the specialty of hospice and palliative medicine. They also advance Maintenance of Certification and research endeavors and promote national quality improvement. The increasing requirement for quality reporting within value-based payment programs has elevated the need for organized data systems.
Physicians that submit data to a qualified CDR can satisfy some of the Center for Medicare and Medicaid Services (CMS) Merit-Based Incentive Performance System (MIPS) program requirements. With the emergence of MACRA, several organizations have expressed an interest in coming together to discuss a coordinated approach to developing or connecting CDRs for hospice and palliative medicine.
“To improve the care of patients with serious illness, we need to develop, test and implement quality measures that matter for them and provide reporting platforms that empower clinicians to engage in quality improvement,” states AAHPM Chief Medical Officer Joe Rotella, MD MBA HMDC FAAHPM. He notes that existing registries supply important pieces for solving the quality puzzle, but a complete solution will require deeper collaboration and integration.
With this goal in mind, AAHPM and its partner organizations, the Center to Advance Palliative Care (CAPC), the National Palliative Care Research Center (NPCRC), the Global Palliative Care Quality Alliance (GPCQA), and the Palliative Care Quality Network (PCQN), recently developed a proposal and were awarded a $487,000 grant from the Gordon and Betty Moore Foundation to explore the feasibility for integrating existing registries or creating a new one to advance the quality of care for patients with serious illness. AAHPM will serve as the lead organization to guide and organize this project in recognition of its mission and role as a national medical specialty society. Quality Committee chairs Christine Ritchie and Laura Hanson will serve in the Project Co-Lead roles. The activities funded by the grant will occur over a 12 month period (November 2016 – November 2017).
Over the past year, the Academy has convened groups of registry developers and other stakeholders from hospice and palliative care. “AAHPM is helping to bring key stakeholders together to identify a quality infrastructure and resources needed for hospice and palliative care clinicians and their patients,” Christian Sinclair, MD FAAHPM, Academy president adds. “This support from the Moore Foundation will help us move forward together.”
The Gordon and Betty Moore Foundation fosters path-breaking scientific discovery, environmental conservation, patient care improvements and preservation of the special character of the Bay Area. Visit Moore.org and follow @MooreFound.
Fore more information about this work and registries in general, visit our website.
The National Quality Forum (NQF) held an in-person meeting in Washington, DC, May 10-11, 2016, to re-evaluate 16 palliative & end-of-life care performance measures. Information about the measures being evaluated, the NQF process, and the NQF Standing Committee roster can be found on the NQF website. AAHPM leaders Christine Ritchie, Paul Tatum, Gregg VandeKieft, and others were chosen to take part in the NQF Standing Committee. AAHPM had previously submitted comments for the Standing Committee to consider, and AAHPM staff Katherine Ast, Director of Quality & Research, was on hand at the meeting to deliver additional comments:
“AAHPM and other organizations from the National Coalition of Hospice and Palliative Care are here to express our strong support for the continued endorsement of all the measures brought forward for maintenance in this project. Please take note of the letter we submitted prior to this meeting which highlights some of the issues our field faces that contribute to our lack of relevant measures, particularly those with a true palliative care denominator. What we want to emphasize today is how critical it is that we keep the endorsement of the measures we do have so they can be used to improve the quality of care for our patients and families and to enable our clinicians to participate in value-based reimbursement.
NQF, CMS and the MAP have indicated though various publications and rule-making that palliative and end-of-life care represents a major gap in quality measurement. NQF & CMS have also called for measures to become more cross-cutting. Our field is very unique since our patients are all seriously ill and death is not always a negative outcome, and can likely be a neutral or positive outcome. We need measures that are flexible, take patient preferences into account, emphasize care coordination, family meetings, goals of care, etc. The approach to measure development for our field cannot be cookie cutter. In order to increase the usability of the measures we have and expand the settings and populations for which they can be implemented, we need to keep working with what we have.
We have so few outcome measures in our field, particularly patient-reported measures and for good reasons. However, we do have NQF #0209 which is able to capture patient self-report of pain. No, it can’t capture every patient so other measures need to be developed. But it does capture patient self-report of patients who can report. NQF staff Karen Johnson asked the question at the beginning of today’s meeting that if we had outcome measures to capture enough aspects of the quality of care for patients with serious illness, would we still need process measures? Unfortunately, we have so few outcome measures, that we couldn’t possibly dispose of our process measures to measure quality. However, we do have this outcome measure and we should keep it. We believe that risk adjustment or risk stratification is not critical for this or any other measures brought forth today, although it is currently being explored for several of the measures. The measures are used for comparison among similar providers and there is no expectation that performance will be 100%.
Benchmarking is a critical component to measuring the quality of care and without measures to report and data to aggregate, we can never get to any benchmarks in our field. There are certain processes that many believe should continue to be measured, even up to a rate of 100%. (For example, not having an ICD deactivated before an expected death most consider a “never event” and yet it still happens.) What does it mean for a measure to be topped out? With such a new field still finding its place in health care and in different settings, we think all the measures are far from being topped out, even if they approach 100% performance. In addition, many measures continue to show a clear opportunity for improvement. Once we expand the measures to be reported in multiple settings and with a true palliative care denominator, then we can start to enable benchmarking and true comparison of providers. We’ll need to keep the endorsement of all the measures presented here today in order to see that goal become a reality.”
Questions? Contact Katherine Ast at email@example.com.
As the field of Hospice and Palliative Medicine grows up and integrates into mainstream medicine, we find ourselves increasingly focused on building the evidence base for our practice and developing quality measures that will drive the best outcomes. That’s a noble endeavor, but as we struggle with the science, we run the risk of losing touch with the heart of our work. What drives us to run toward the medical failures, the suffering, the dying and the bereaved when most of medicine has been running the other way? Many would say it’s a call to compassion.
We remember the patients who taught us something special about how we can make a difference as healthcare professionals. Cicely Saunders never tired of telling the story of David Tasma, the patient who became “the window” in her hospice. I treasure the memory of one of my first hospice patients, a 50 year old male hairdresser who was dying of lymphoma in our inpatient unit. I had admitted him expecting to tune up his pain meds and send him home as good as new, but he started into an accelerating daily decline. I felt it was my duty to break the bad news to him that his time was short. I sat at the head of his bed, leaned in and softly listed all the signs that he was getting worse. His sister sat at the foot of the bed in silence. He nodded his head and listened. Suddenly, he reached up with both hands, grabbed my head and gave my bald spot a big rub. After a moment of shock, his sister and I burst out laughing. He grinned and said “I know─ it’s OK.” He died comfortably at home a few weeks later and I went to the wake. His sister introduced me to the rest of the family as the doctor whose head you rub for good luck. They lined up and took turns rubbing my bald spot and we all laughed. He taught me that sometimes just being myself is worth more than all my medical expertise. How do you develop an evidence base around that practice? How do you capture that positive outcome in a quality measure?
As we parse out the components we hope will define quality palliative care, we have to be careful to preserve the whole experience. When I was an English major, I explicated my share of poems, but analysis of the bits and pieces never came close to capturing the beauty of the whole. As Wordsworth wrote:
Sweet is the lore which Nature brings;
Our meddling intellect
Mis-shapes the beauteous forms of things:–
We murder to dissect.
I was privileged to attend a recent AAHPM summit on quality. We talked about taking the lead in defining quality for our field. We were each asked to offer a personal vision for what the AAHPM Quality and Practice Standards Task Force could be in five years. I put mine in the form of a thank you letter from a future patient:
August 9, 2012
Dear AAHPM Quality Task Force,
When I learned a couple of months ago that I have advanced cancer, I was afraid. Not just of the usual things–having pain, being a burden, dying–even more afraid of how the doctors would treat me. I flashed back to the ordeal we went through when my husband died of cancer 6 years ago. As we moved from hospital to clinic to hospice at home, it seemed everyone treating us had their own agenda. We felt lost and out of control. We were told what to do, not asked. He was in pain for so long before anyone did anything about it. When he finally got pain medication, he got so constipated that the hospice nurse had to remove it manually. We felt like cogs in a machine–a horrible, grisly machine.
I cannot believe how different my experience has been. Every time I go to the clinic, someone asks how I feel and what goals I have and how they can help. They are patient with my questions. They are honest and straight with me and support the choices I make that are right for me. I feel I am driving this bus. And I am always asked about my bowels! I am amazed at the transformation. I hear you all had something to do with it and just want to say thanks.
It seems to me that we need to go way beyond the current focus on symptom management and discussing goals of care to develop evidence-based practices and quality measures that actually foster compassion. We must be the standard bearers for patient- and family-centered care. We must promulgate best practices in interdisciplinary collaboration and holistic care. We must advocate for no less than restoring the human touch to health care.
Joe Rotella, MD, MBA, FAAHPM
Senior Vice President, Chief Medical Officer
To improve quality, whom we measure is as important as what.
by Joe Rotella, MD, MBA, FAAHPM
The growing awareness in America that our healthcare system is unaffordable and fails to deliver consistent quality has led us to healthcare reform, mandatory quality reporting, pay-for-performance, and Accountable Care Organizations (ACOs). We need good measures of quality healthcare so we can direct our limited resources where they provide the most value. We would do well to pay particular attention to the quality of care near the end of life. As Ellen Goodman noted in her recent Harvard Business Review article “Die the Way You Want To”, 25% of Medicare expenditures are incurred by the 5% who are in their last year of life. Surely we can deliver more value by increasing quality of life and decreasing futile medical interventions for these patients.
It makes sense that we should measure quality in order to improve it, but figuring out exactly how can be a real devil. We often focus on what we should measure—the numerator, but whom—the denominator—is just as important. Working on the AAHPM Quality and Practice Standards Task Force this past year has been an eye-opening experience for me. Wading through ponderous technical documents describing a host of proposed national quality measures, I was struck with how hard it is to design a really good one. The National Quality Forum (NQF) recently recommended a set of quality measures for hospice and palliative care. The NQF only recommends measures with well-defined methodologies validated for the specific populations under consideration. Many employ a narrow denominator, e.g. hospice patients rather than dying patients. It’s a good start, but I hope policymakers and payers will be careful in how they incorporate them into mandatory quality reporting systems. Measuring only hospice patients in order to improve the quality of end-of-life care is like searching for a lost dollar bill only where the light is good. The real payoff may be lurking in that dark corner.
For example, the best set of quality measures we have for end-of-life care so far, the Family Evaluation of Hospice Care (FEHC), has only been validated for hospice patients. When we apply the FEHC to hospices, we can compare the quality of Hospice A with that of Hospice B. That might be good enough if most dying patients received hospice care, but the National Hospice and Palliative Care Organization reports in its 2011 Facts and Figures that only 42% of those who died in 2010 were enrolled in hospice. So what about the quality of end-of-life care for the majority of patients who die in hospitals, skilled nursing facilities and homes without the benefit of hospice care? How can we measure that?
Current and proposed mandatory quality reporting programs perpetuate the silos in our healthcare delivery system. Since hospitals are designed for treating acute, potentially-reversible problems, they report post-discharge, patient-rated satisfaction surveys that totally miss the experience of the many patients who die during their stay. Likewise, we see skilled nursing facilities as places for rehabilitation, so we require a Minimum Data Set that focuses on restoration of function, even though many patients languish and die there. Since hospice is the place for dying, that’s where we’ll mandate reporting of end-of-life quality measures, but that’s not going to improve the quality of dying where most of it happens.
The Medicare final rule creating ACOs requires them to report on 33 quality measures linked to how much they can share in any savings. Despite the striking disproportion of Medicare dollars spent in the last year of life, none of these measures has anything to do with comfortable dying or the appropriate utilization of hospice or palliative care. In the original 127-page proposed ACO rule, the word “hospice” appeared once and “palliative” not at all. Comments from the AAHPM and others must have been heard, because the terms appear about a dozen times in the final rule. It’s a step in the right direction, but we have a long way to go. We need researchers to develop and validate quality of life and quality of dying measures for all relevant care settings. Once available, we should push for their inclusion in all mandatory quality reporting and pay-for-performance systems. We’ll never get the maximum value for the Medicare dollar without it.
The Journal of Pain and Symptom Management is pleased to announce a call for papers that report the results of Quality Improvement initiatives in palliative care.
This publication of brief reports is a joint project of the American Academy of Hospice and Palliative Medicine and the National Hospice and Palliative Care Organization. Papers focusing on hospice and palliative care settings are encouraged.
The Journal offers this professional forum to encourage dialogue, peer review, and dissemination in response to a growing international concern about quality care, patient safety, and the role of evidence-based medicine. Submissions should describe specific Quality Improvement projects, such as efforts to increase pain screening, encourage goals discussions, promote palliative care consults, encourage earlier hospice referrals, or support staff well-being. Submissions must describe the impact of the intervention, either in terms of change over time or relative to a comparator.
Papers will be considered Brief Reports and must include the following:
1) A structured abstract of <150 words with five headings: Background, Measures, Intervention, Outcomes, Conclusions/Lessons Learned.
2) Five sections—Background, Measures, Intervention, Outcomes, Conclusions/Lessons learned—requiring no more than 1,250 words
3) No more than 10 references and two graphs or tables. (References/tables/ graphs are not included in the word count.)
4) A cover letter specifying that the Brief Report is being submitted in response to this Call for Papers.
Papers that fulfill the length and formatting requirements will undergo preliminary review by the Editors, and some will undergo external peer review. Acceptance for publication will depend on evaluation of the problem addressed, innovation, quality of the description, and clinical relevance of the intervention and outcomes.
Manuscripts submitted in response to this announcement should be submitted online to the Journal of Pain and Symptom Management (http://ees.elsevier.com/jps/) by April 15, 2011.
For questions regarding format or content of potential manuscripts, please contact Dr. David Casarett (Casarett@mail.med.upenn.edu).
I have always yearned for a Medicare Benefit for palliative care services, so it was with some excitement that I read an e-mail from MedPAC inviting me to a meeting in Washington March 23, to discuss palliative care.
The Medicare Payment Advisory Commission (MedPAC) is an independent Congressional agency established by the Balanced Budget Act of 1997 to advise the U.S. Congress on issues affecting the Medicare program. The Commission’s statutory mandate is quite broad: In addition to advising the Congress on payments to private health plans participating in Medicare and providers in Medicare’s traditional fee-for-service program, MedPAC is also tasked with analyzing access to care, quality of care, and other issues affecting Medicare.
The Commission staff invited a diverse group of palliative care specialists to come to Washington to discuss general issues such as the definitions and scope of non-hospice palliative care, the strength of the evidence that palliative care improves quality, outcomes, and service use, and factors that enable or hinder the delivery of palliative care.
The conference was attended by MedPAC staff, a moderator from the Lewin Group, and Janet Bull (Four Seasons, NC), Lyn Ceronsky(Fairview Services, Minneapolis), Timothy Keay (U Md Ca Center, Baltimore), Randall Krakauer (Aetna, NJ), James Lee (Everett Clinic, Washington), Diane Meier (CAPC , NY), Susan Mitchell (Harvard Aging Research, Boston), Michael Nisco (UC & Hospice, Fresno), Russell Portenoy (Beth Israel, NY), Greg Sachs (U of Indiana Aging Research, Indianapolis), Linda Todd (Hospice and PACE of Siouxland, Indiana), and myself.
It soon became clear that a new benefit for palliative care services is not on anyone’s drawing board, but the inclusion of palliative care services in new initiatives like Accountable Care Organizations, Community Health Teams to Support the Patient-Centered Medical Home, Hospital Value Based Purchasing, or Center for Medicare and Medicaid Innovation at the Center for Medicare Services is a possibility.
It was an energized discussion of wide-ranging aspects of our field, and we all hope the MedPAC staff can use what they learned from us to help Medicare beneficiaries with serious illnesses get the best possible care.
Porter Storey MD
Executive VP, AAHPM
Colorado Permanente Medical Group
Nausea and vomiting is a drag! Hope no one is feeling queasy since this talk is all about N/V.
Dr. Eric Prommer is very knowledgeable about serotonin and the serotonin antagonist like ondansetron . Interestingly, serotonin, which is constantly being produced, can overcome the antagonist and this is why these medications may lose effectiveness.
At this time these medications are used for prevention of chemotherapy induce, post-op and radiation induced nausea\ vomiting. Most serotonin activity is increased in the first 24-48 hours after the insult. Therefore this is why these medications are mostly used in theses settings? The issue in palliative medicine is that we are trying to manage the problem of nausea \vomiting in a more chronic setting and not specifically related to a specific event.
Evidence Base is Limited
Opioid Induced Emesis
Ondasnsetron versus reglan may be helpful?
24 patients granesetron 3mg +dexamethasone 8mg
Highly effective with good control in over 80% of patients
280 patients with advance cancer but commonly on opioids the N\V may be in part the cause of nausea\vomiting.
Total Control of N\V which was less than 3 hours of distress a day could be achieved in up 75-85 % of patients with relatively minimal side-effects. However, study flawed in several ways but very suggestive to be highly effective.
1) Serotonin antagonists are not all alike- Therefore it may be that when one is not working that a different drug in this class and or dose may be helpful .
2) Efficacy is studied in Opioid and bowel obstruction
3) Minimal adverse effect
4) Usable in combination with other agents and steroids.
5) The cost of the agents can be extremely high.
6) More studies are needed to use these medications wisely
Four Seasons Hospice has taken the plunge and begun to participate in the Physician Quality Reporting Initiative (PQRI) of Medicare. Since fall 2010, we have successfully been submitting data on three PQRI measures: #47 (Advance Care Plan), #154 (Falls risk assessment), and #155 (Falls plan of care). Our palliative care program extends across the inpatient and outpatient setting and services are delivered by nine midlevel providers and four physicians. We incorporated these PQRI metrics into our database collection tool, and educated our providers on the importance of accurately documenting these metrics. It was equally important to train our administrative and billing department on proper ways to track and code these metrics. Our hope is that future measures will be specific to our field and will eventually serve the purpose of the PQRI program, which is to ultimately improve quality care to our patients. In the meantime, we are gaining experience with the program so that we will be ready when participation becomes mandatory.
We have prepared a brief guide to the PQRI process to help other hospices who are considering participating in PQRI.
We are very interested in hearing about the experience of any other hospice or palliative care program that is participating in PQRI. Please leave a comment on the blog and let us know who you are. Let’s trade experiences and support each other.
JPSM has announced a new call for brief reports explaining the results of quality improvement initiatives in palliative care. JPSM associate editor David Casarett and members of the AAHPM Quality Task Force were puzzled by the dearth of good information about what quality improvement innovations programs are finding successful. They realized that there aren’t many good venues for sharing the results of quality improvement initiatives, since the journals typically focus on publication of more traditional research. Thus, the idea was born for a special JPSM series on quality improvement, which will review submissions against criteria appropriate to quality improvement, not research. This series is aimed at sharing quality improvement initiatives in hospice and palliative care so that we begin to build a shared body of knowledge about what works (or doesn’t) to improve hospice and palliative care.
If your program has a quality improvement innovation of which you are proud, please take the next step and share it with your colleagues via the JPSM series. Submissions are due April 15, 2011. More information about the call.
Many health care initiatives launched by the Affordable Care Act focus on improving the quality of health care. The Academy and its members have been participating in these efforts, trying to bring wider visibility to the role that palliative care and hospice care can play in improving the quality of health care for patients with serious, advanced illness. Here’s a brief recap of some of the recent activity:
- The Palliative Care and End-of-life Care workgroup of the National Priority Partners, (convened by the National Quality Forum), held an all day workshop on November 2 to come up with priorities to promote the diffusion of palliative care throughout the health care system. Numerous AAHPM members either presented or participated, including Sean Morrison, Sarah Friebert, Javier Kane, Karl Lorenz, Christine Ritchie, and Joan Teno. Diane Meier presented the opening overview, examining the current state of palliative and hospice care services and opportunities to improve access and close performance gaps. The speakers’ slides are posted on the NPP website.
- AAHPM submitted comments to the Secretary of HHS on the National Health Care Quality Strategy and Plan. AAHPM’s public policy advisors see this plan as a critical document that will likely guide how federal energy and resources are spent over the next several years. AAHPM’s comments (which other Hospice and Palliative Care Coalition member organizations also submitted) made two main recommendations:
- Add focus on patient-centered care guided by palliative care principles to measurement and accountability for all providers serving seriously ill patients.
- Assure that specialty level palliative care and hospice services are broadly available and of demonstrably high quality.
Specific actions needed to achieve the above goals were also specified.
- AAHPM also submitted comments (as part of the Hospice and Palliative Care Coalition) on the National Quality Forum measure gap agenda. Incredulously, the committee that ranked priorities for measures needed over the next few years ranked palliative care LAST. It received ZERO votes! The Coalition said in its comments: “the Coalition urges the NQF to recognize the urgency of making palliative care measures a high priority on the national measure development agenda.”
AAHPM’s Quality Task Force, chaired by Sydney Dy, would appreciate hearing from you about how we are articulating the need for quality palliative and hospice care. Please leave a comment and let us know whether you think we are succeeding in making the case.