The Devil Is in the Denominator
Feb 22nd
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.
President Crossno’s Letter to American Medical News
Jan 6th
Letter to American Medical News
January 6, 2012
Re: Handful of States Promise Physicians Online Access to Advance Directives, posted January 3, 2012 on amednews.com http://bit.ly/vFKMvx
When very sick patients are unable to express their wishes toward the end of life, nothing is more heartbreaking for doctors and loved ones than not knowing what those wishes are. It’s up to grieving and frightened family members to try to recall a past conversation, or remember whether there’s an advance directive, and if so, how to put their hands on it. Online registry programs for advance directives that give doctors access to this information would help ensure that we meet our patients’ wishes and that we don’t leave family members always questioning the decisions they were forced to make.
Patients need to hear from their doctors the importance of advance directives. They need to know that an advance directive can be changed, and that it can direct doctors to stop aggressive life-saving treatments, or continue them. Most important, an advance directive needs to be readily accessible when you need it. The American Academy of Hospice and Palliative Medicine has information on advance directives at www.aahpm.org and www.PalliativeDoctors.org
Ronald J. Crossno, MD CMD FAAFP FAAHPM
President, American Academy of Hospice and Palliative Medicine
What Is Palliative Care?
Jan 3rd
by Ruth Mugalian, Public Communications Inc.
Read the full article about defining palliative care in the Winter issue of The Quarterly.
When I talk about my work with hospice and palliative medicine specialists and why I enjoy it, I usually say something like this: “They’re doctors who take care of very sick patients. They relieve their symptoms and make them feel better.” It should be a communications professional’s dream. It’s simple, understandable and positive. There’s no esoteric medical jargon or complex technical language to translate into layman’s terms.
And yet, that simple, positive description doesn’t quite capture it.
Describing what hospice and palliative medicine specialists do is an evolving challenge, as evidenced by the many different ways the doctors explain their work. Unlike many other medical specialties, there’s no simple one- or two-word description, like “heart surgeon” or “cancer specialist.” “They relieve symptoms” is far too narrow, but also too broad. Don’t most doctors relieve symptoms? And, what about all the other care they provide: the help with decision making and navigating the system, the coordination of care, the support for families?
Just summarizing the breadth of care is challenging enough, but of course, there’s another challenge. The heart surgeon fixes the heart. The cancer specialist attacks the cancer. HPM doctors don’t cure. They provide the care that helps the surgeon and the oncologist cure, and that helps the patient endure the cure.
And sometimes there is no cure. That’s when the HPM’s role takes on special meaning and ironically and frustratingly gets twisted into something negative: they withhold care, give up on the patient, hasten death. Of course, the opposite is true. They stay on the job when others have no more to offer. They continue, or begin, providing care when others have stopped. They’re passionate about controlling pain. Snappy phrases are tempting: “They don’t cure, they care.” “They never stop caring,” “Helping you endure, with or without a cure.” They’re simple, understandable and positive, and they don’t quite capture it.
Update from the 2011 AMA Interim Meeting
Dec 2nd
by Chad D. Kollas, MD FACP FCLM FAAHPM—AAHPM Delegate to the AMA
The American Medical Association (AMA) held its Interim Meeting in a revitalized New Orleans from November 12-15, and AAHPM’s representatives enjoyed a productive meeting—while also partaking of Louisiana’s legendary cuisine! Alternate delegate Dennis Pacl, MD FACP, and I were pleased to welcome Patrick White, MD, AAHPM’s 2011-12 Delegate to the Resident and Fellow Section of the AMA, to our delegation. Dr. White is a palliative care fellow at the University of Pittsburgh, and he brought a wealth of youthful enthusiasm and the wisdom gained from his world travels to the proceedings of the AMA. Advocacy serves as the focus of the AMA’s Interim Meeting, and we enjoyed the good fortune of advancing several of the Academy’s key public policy priorities.
Reducing Prescription Drug Abuse
Meeting attendees awoke Nov. 14, to find the front page of their complimentary USA Today declaring, “Surge in Babies Addicted to Drugs.” The article dramatically underscored the urgency of one of the main issues addressed at the Interim Meeting — prescription drug abuse, including the increasing trend in deaths from opioid medications. The AAHPM delegation planned its strategy to advance Resolution 907, which called for the AMA to promote a variety of measures designed to address the problem. We secured support from the Pain and Palliative Medicine Specialty Section Council (PPMSSC) to offer testimony at live, on-site Reference Committee Hearings, where we emphasized the urgency of a response, noting that recent changes in state laws, such as Florida’s Statute 456.44, would impose new, strict rules on physicians prescribing controlled medications as early as January 2012. In the end, an amended resolution was adopted as AMA policy. It calls on the AMA to 1) promote physician education and training on controlled substances, 2) encourage screening of patients for drug misuse, 3) provide materials to physicians to promote treatment of their patients’ unhealthy behaviors, and 4) encourage physicians to use state prescription monitoring programs. The resolution’s sponsor offered gratitude to the Academy and PPMSSC for helping to advance the policy.
Visit with ONDCP Director
The Academy’s ongoing efforts to balance patients’ legitimate access to controlled medications while improving public safety received a big boost that was set up by AAHPM’s Capitol Hill Days in September 2011. This fly-in visit to Washington, DC, allowed AAHPM physicians and staff to meet with federal legislators and regulators to advance the Academy’s public policy priorities, including with Regina LaBelle, Policy Director for the Office of National Drug Control Policy (ONDCP). In follow up, AAHPM was able to secure a face-to-face meeting with ONDCP Director, R. Gil Kerlikowske. He was speaking at the AMA meeting as part of a panel discussion focused on the nation’s prescription drug abuse crisis .
We met directly with Kerlikowske and LaBelle for about 35 minutes to discuss the problem of prescription drug abuse. We helped them understand the special access needs of patients’ receiving palliative care while emphasizing the Academy’s ongoing commitment to patient and public safety. We discussed AAHPM’s collaborative efforts to prepare for prescriber education mandated by the opioid REMS, and we provided personal insights into providing palliative care in an increasingly challenging healthcare environment. Near the end of the meeting, we offered to serve as a resource for ONDCP in its effort to combat prescription drug abuse, and the directors both expressed genuine appreciation. They also accepted AAHPM’s offer to attend the Pain and Palliative Medicine Caucus Meeting, where they continued their positive discussion with AAHPM and PPMSSC members. This special opportunity will help to grow AAHPM’s relationship with another important federal regulatory body, very much in the way that the Academy’s relationship with FDA has evolved productively through the process of developing the opioid REMS.
Advance Care Planning
AAHPM’s delegation helped achieve adoption of Resolution 005, “Encouraging Standardized Advance Directive Forms Within States,” offering support in onsite hearings. The amended resolution was adopted by the AMA, and the Medical Student Section that sponsored it expressed gratitude to AAHPM for its support. Promoting advance care planning, like assuring patient access to medications used in palliative care, stands as one of the Academy’s public policy priorities. Successfully supporting Resolution 005 therefore furthered AAHPM’s policy goals, built upon existing AMA policies that help promote advance directives and advance care planning, and helps keep this issue in the public eye in a positive manner.
National Drug Shortages
The AMA plans to release a detailed report about national drug shortages, a problem that has profoundly affected palliative care specialists over the last several years. In the meantime, the AMA House passed a resolution that declares the issue of national drug shortages to be a “public health emergency.” This issue particularly resonated with colleagues from the American Society of Clinical Oncology (ASCO), who–like AAHPM–are members of the PPMSSC. The AAHPM Delegation will report on findings of the AMA study of national drug shortages when that information becomes available, which should be in June 2012.
A Fellow’s View of the AMA Meeting
Dec 2nd
by Patrick White
Patrick White is a Hospice and Palliative Medicine Fellow at the University of Pittsburgh and AAHPM’s delegate to the American Medical Association (AMA) Resident and Fellow Section.
Attending the American Medical Association (AMA) Interim Meeting in New Orleans was an amazing experience. From my first alligator sausage through our last meeting with the head of the White House Office of National Drug Control Policy, it was certainly one of the most entertaining and educational weeks of my fellowship. I was pleasantly surprised to see how many of the issues we discussed are relevant to my future career: from advocating for standardized advanced directive forms within states, to addressing shortages of crucial medications like morphine, to finding ways to reduce prescription drug abuse/misuse/diversion.
I was struck by how both my peers and the senior AMA delegates were interested in learning about how the hospice and palliative care community viewed the impact of pending legislation. I watched our own Chad Kollas chair the Pain and Palliative Medicine Specialty Section Council – a group encompassing 9 specialty organizations from addiction medicine to clinical oncology – advocating our positions on issues while building relationships with related specialties to further advance palliative medicine. The greatest highlight came when Jacqueline Kocinski, AAHPM Director of Health Policy and Government Relations, obtained a meeting with Gil Kerlikowske, Director of the White House Office of National Drug Control Policy. He was in New Orleans to address the AMA as part of a panel discussing prescription drug abuse. Our delegation discussed the unique concerns of palliative care and hospice physicians who frequently need to obtain schedule II opioids emergently for patients who are in acute pain crisis. Director Kerlikowske shared that he wanted additional input from AAHPM as new initiatives designed to stem the tide of opioid addiction and death move forward, helping to preserve our timely access to vital pain medications.
Observing the impact of these small meetings made me realize just what a huge impact groups like the AAHPM and AMA can have in shaping new health care policy. With so many crucial issues facing both palliative care and medicine as a whole, it is both an exciting and challenging time to be involved. I am grateful for the opportunity to see first-hand just how effective our voice can be and to work with people dedicated to advancing palliative medicine.
REMS ARE COMING! – Comment before Dec 7!
Nov 21st
It was a privilege to represent AAHPM at the fall meeting of the Council of Medical Specialty Societies in Washington D.C. on November 18 & 19, 2011. This was my first CMSS meeting and I was struck by the energy, collegiality, and nimble structure of this “society of medical societies.” There is no House of Delegates to debate everything like in the AMA – just a Board of Directors, Component Groups (CEO’s, Membership directors, clinical practice guideline developers, etc.) and occasional task forces. They have done a lot, but only taken a stand on 5 public topics – the most recent being support of comparative effectiveness research (in a letter the AAHPM signed).
I spent my time in a day-long seminar on the upcoming REMS – Risk Evaluation and Mitigation Strategy for long acting opioids. Regina Labelle, from the White House Office of National Drug Control Policy certainly got my attention when she explained that in 17 states, deaths from unintended drug overdoses now outnumber deaths from traffic accidents! Understandably Congress and the Administration want something done about this. Theresa Toigo, R.Ph., M.B.A., from the FDA explained that the Food and Drug Administration Amendments Act of 2007 (FDAAA) gave FDA the authority to require manufacturers to develop and implement a REMS when necessary to ensure the benefits of a drug or biological product outweigh its risks.
On April 19, 2011, in conjunction with the Office of National Drug Control Policy (ONDCP) release of the Obama Administration’s Epidemic: Responding to America’s Prescription Drug Abuse Crisis—a comprehensive action plan to address the national prescription drug abuse epidemic, FDA issued letters to application holders (makers and seller of opioids) directing them to submit a REMS within 120 days and describing the elements that needed to be included in the REMS (REMS notification letters).
So what is REMS and why should we care?
After notifying the makers and marketers of long-acting and extended-release (LA/ER) opioid drugs that they were required to submit a risk evaluation and mitigation strategy (REMS), FDA has been working with the sponsors that market these products on the required REMS. The central component of the Opioid REMS is an education program for prescribers (e.g., us) so that LA/ER opioid drugs can be prescribed and used safely. FDA expects the prescriber training to be conducted by accredited, independent continuing education (CE) providers (like AAHPM), without cost to the healthcare professionals, under unrestricted grants to accredited CE providers funded by the sponsors. Kate Regnier, M.A., M.B.A., from ACCME assured us that industry would not be dictating the curriculum so the CME can comply with ACCME standards.
What are they going to be teaching us?
On November 4, 2011, FDA announced the availability for public comment of a draft “Blueprint.” The Blueprint, developed by FDA with advice from other Federal agencies, is a basic outline and the core messages that FDA believes should be conveyed to prescribers in a basic two to three hour educational module. After it is completed and approved as part of the REMS, the Blueprint is posted on the FDA web site for use by CE providers in developing CE courses. The Blueprint for provider education can be found at
http://www.fda.gov/downloads/Drugs/DrugSafety/InformationbyDrugClass/UCM277916.pdf
While, in general, I found these tenets reasonable, there isn’t a lot here about effective pain management for seriously ill patients. A few quotes will give you the flavor:
Health care professionals who prescribe extended-release (ER) and long-acting (LA) opioids are in a key position to balance the benefits of prescribing ER/LA opioids to treat pain against the risks of serious adverse outcomes including addiction, unintentional overdose, and death.
Prescribers should caution patients that ER/LA opioids can cause serious side effects that can lead to death.
Prescribers should explain that sharing ER/LA opioids with others may cause serious side effects including death, and that selling or giving away ER/LA opioids is against the law.
Prescribers should ensure that patients adhere to a treatment plan and monitor patients for misuse and abuse by
- Recognizing aberrant behavior
- Utilizing Prescription Drug Monitoring Programs to identify potential abuse where available
- Understanding the role of drug testing and performing drug screens as indicated
- Screening and referring for substance abuse treatment when indicated
- Performing medication reconciliation at each visit
Whether this program will be required to maintain your DEA registration is being discussed. The REMS notification letters stated that although there is no mandatory requirement that prescribers take the course as a precondition to dispensing the medication to patients, application holders will be required to establish goals for the number of prescribers trained, collect the information about the number of prescribers who took the courses, and report the information to FDA as part of periodic required assessments. Although FDA recognizes that additional training modules could be helpful, FDA’s goal is to require basic education for all prescribers of long-acting and extended-release opioids, and at this time, FDA does not intend to develop or approve messages as part of the REMS beyond those approved in the basic core module.
Can we have any input into this?
We have until December 7 to submit comments on the draft Blueprint http://www.regulations.gov.
The AAHPM has been working with a group called CORE to develop a program that meets these criteria. Stay tuned for more about this.
On Organ Donation and Patient Wishes
Oct 17th
by Katie Macaluso, AAHPM Quarterly Managing Editor
If you’re a member of AAHPM, you should be spotting a copy of the fall issue of AAHPM Quarterly in your mailbox any day now (if it hasn’t arrived already). Pick up this issue to learn more about the 2012 Annual Assembly, certification deadlines, advocacy efforts, and where palliative care falls in the readmissions boom (a feature article by Larry Beresford).
One standout article in the fall issue is “A Lasting Gift: Organ Donation” by Lucille Marchand, MD BSN. In this Art of Caring column, Dr. Marchand discusses one patient’s struggle to plan for organ donation upon his death. The patient was diagnosed with end-stage amyotrophic lateral sclerosis (ALS) and hoped to find meaning in his early death through the gift of organ donation. As the patient and his hospice team worked to develop a plan that would allow for a comfortable death for him and the successful harvesting of organs, it became clear that too many risk factors might prevent organ donation from being a viable option for him. Read the full article here.
Helping patients achieve their final wishes is so important to all involved in the interdisciplinary team. Have you encountered a similar situation to this one? How was it resolved? Do you have advice for your colleagues in hospice and palliative medicine?
Another Way to Advocate for Patients
Oct 10th
by Emily Muse, AAHPM Communities Manager
I am a planner. I create lists, diagrams, and spreadsheets for almost everything. I even use a planning rubric when packing for weekend trips. Obviously, I began my preparation for the 2011 AAHPM Washington DC “Capitol Hill Fly In” by researching my congressional representatives and senators. I wanted to learn as much as possible about the people I would be meeting and were “representing” me in D.C. A lot of this investigation was done just by entering my zip code in the AAHPM Legislative Action Center. (http://www.capwiz.com/aahpm/home/)
At a glance I was able to discover all the committees that my senators and my congressional representative served on. How they had voted on specific legislation and issues and I read and reread all the proposed legislation that would affect AAHPM members. It was wonderful. After accessing their office addresses I plotted out where they were all located within the map of Capitol Hill.
I was ready, or so I thought.
What I was not prepared for was the knowledge, dedication and tenacity of our AAHPM members. It did not surprise me, it wowed me. Not only had our members prepared for this visit, they had been advocating and championing Hospice and Palliative in ways I had never thought about. One member encourages staff to contact elected officials regularly about HPM issues. Another invited his representative to visit his program and learn firsthand what Palliative Medicine provides for constituents. All of our members had brought with them anecdotes of patients achieving successful pain and symptom management, making decisions about their care that made sense for themselves and their families and utilizing allocated resources appropriately due to team based care and excellent communication among providers. And what was even more impressive, Senators, Representatives and Staffers all listened. They asked questions and posed some opposition, but they were open to learn more. I hope some of those members who participated in this year’s DC Fly In will write about their individual experiences. I think all of the participants were amazing, even one who commented that this was “just another way we advocate for our patients”.
AAHPM Calls on Washington (and you should be in touch with your local folk!)
Oct 4th
Thoughts on Local Sausage-making and DC:
I spent an evening walking from the Washington Monument to the U.S. Capitol Building last week. Although the classic reference about legislation is “sausage-making” and something you don’t want to watch, I found the area by the capital buildings an especially peaceful spot to stop and admire the view of the reflecting pools projecting the mirrored image of our illuminated Capitol after a busy couple of days in DC. Despite all of the negative coverage about modern politics, the fact is that those working in DC are amazing, intelligent people. I couldn’t help but to be inspired by the promise that is the United States.
The AAHPM Public Policy committee held its second DC fly- in last week which proved a great chance to see DC in action. I was especially impressed by AAHPM’s policy team and its lobbying colleagues who are working hard to help represent all of us in Hospice and Palliative Care.
Perhaps you are thinking, the budget is a mess, health care reform is too controversial, and nothing can come of a DC visit?
To be honest, so did I. But I was wrong. The connections made this trip matter.
Sausage making in the Sinclair Lewis era was a disgusting mess and high risk, and I suppose that is why it was an apt metaphor for policy-making. Well, today I know my sausage makers, Patchwork Farms. They farm near me and I get their wares at my grocery. I know them and trust that what they produce is Missouri locally-raised pork that is high quality and raised in such a manner that is safe for my community.
And this is what is needed of you. You need to know your legislative representative and senators. (You can find them and e-mail them directly via AAHPM’s Legislative Action Center.)
Ask to meet them in your home town. Meet their health care aides.
And what do you say?
- Tell them who you are
- Explain what Palliative Medicine is. (I told the story of a rural gentleman that didn’t quality for hospice, but needed a good symptom control plan to help him achieve his key goal of avoiding hospitalization, and as a result he was able to go fishing and be at home when death came)
- Offer to be a resource for them locally
- Ask for support for the Palliative Care and Hospice Education and Training Act (read more about PCHETA here)
- Let them know of the bills that AAHPM supports (see link to AAHPM policy committee here)
- Make plans to stay in contact
Shouldn’t you know who is writing the laws that will determine the future of Hospice and Palliative Medicine and let your relationship help guide those future laws?
But do stay on target. Make sure you review the AAHPM policy site before your meeting, and if you get a question that you can’t answer just say so and promise to get back to them with an answer.
How Do You Define Palliative Care?
Sep 30th
While reading this article from the Philadelphia Inquirer, AAHPM staff came across this definition:
Palliative care, which focuses on treating the symptoms of diseases either fatal or curable, has become increasingly common in U.S. hospitals.
What are you thoughts? How do YOU define palliative care?
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