Posts tagged palliative medicine

The Devil Is in the Denominator

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

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?

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.

Another Way to Advocate for Patients

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”.

How Do You Define Palliative Care?

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?

Pacific Northwest Ahead of the Curve in End-of-Life Care. Or Is It?

by Joanna Fief

I’ve been hearing about the need for improved end-of-life care since I was a kid. My mom was a hospice nurse for many years and always talked about the importance of broader and earlier access to palliative care for patients and their families.

I never dreamed my work would overlap with hers, but for the past few years I’ve been working with The Regence Foundation, a grantmaking organization in the Pacific Northwest focused on increasing awareness and improving access to palliative care. Mom is proud of me, and I feel very lucky to work in a part of the country that is so ahead of the curve when it comes to end-of-life care.

Or is it?

Last month, The Regence Foundation partnered with National Journal, a media organization in Washington D.C., to poll people in the Pacific Northwest on their attitudes toward end-of-life care and how they compare with the rest of the country.

My gut feeling was confirmed. People here are generally more aware of and open to discussing end-of-life care options than other Americans. However, the poll also showed that, just like the rest of the nation, many still aren’t familiar with the term “palliative care.” Plus, about half said that information about palliative care is “available, but only if you know where to look or who to ask.” The Regence Foundation wants to change that.

For me, the key takeaway is that, regardless of geography, when people know what palliative care is, they want it, and I love that part of my job is to help them know what it is and how to access it.

Joanna Fief works at The Regence Group, a total health solutions company. The company’s foundation is called The Regence Foundation, which is working to improve access to palliative care.

Update from the AMA 2011 Annual Meeting

by Chad D. Kollas, MD, FACP, FCLM, FAAHPM – AAHPM Delegate to the AMA

While in Chicago from June 18-20 to represent the Academy at the Annual Meeting of the American Medical Association House of Delegates, my colleague Dennis Pacl, MD FAAP FACP – AAHPM’s alternate delegate – and I took in a show one night…. We saw Steve Martin and Martin Short at the historic Chicago Theater in what was billed as “A Very Stupid Conversation.” Now, I know that some question the continuing relevance of the AMA, but I would assure all AAHPM members that our time spent at the AMA Annual Meeting was anything but stupid. In fact, I am pleased to say that this gathering of physicians representing state and specialty medical societies featured some very thoughtful conversations, many that impact the future of medicine and a number that are key to our field.

I was honored to have been elected in November to chair the AMA’s Pain and Palliative Medicine Specialty Section Council (PPMSSC). As representatives of nine diverse specialties, the PPMSSC reviews the reports and resolutions before the House with implications for the pain and palliative medicine communities and decide where to provide testimony and offer joint endorsement or opposition. One resolution, sponsored by the Iowa delegation, called for a national dialogue by interested parties on end-of-life (EOL) counseling. AAHPM testified in favor of the resolution and identified the Academy and PPMSSC as interested in serving as resources in the endeavor. The AMA House of Delegates adopted the resolution as new AMA policy, and we’ll provide timely updates on the effort. Another resolution, sponsored by the American Thoracic Society, led to a recommendation that the “AMA encourage the Centers for Medicare and Medicaid Services to designate voluntary discussions about end-of-life care as covered services in the 2012 Medicare Physician Fee Schedule.” These efforts – which harmonize with the Academy’s policy priorities – build upon an opinion by the AMA Council on Ethical and Judicial Affairs approved by the AMA House in November 2010, which encouraged physicians to participate in advance care planning.

The AMA House also passed a resolution that called for reform of the Patient Protection and Affordable Care Act (PPACA). Although the PPACA contained many directives consistent with AMA policy, such as expanding health insurance coverage for Americans, it also contained provisions considered undesirable or controversial. The AMA specifically called for repeal of the Independent Payment Advisory Board (IPAB), enactment of comprehensive medical liability reform, studying further the Medicare Cost/Quality index and expanding the use of health savings accounts (HSAs). Support for individual responsibility for health insurance to cover the uninsured was also reaffirmed read more.

The House also accepted a report from CEJA regarding ethics rules guiding industry support for continuing medical education (CME). A representative from the Accreditation Council for Continuing Medical Education (ACCME) testified that the new ethics rules were consistent with current ACCME standards. AAHPM already conforms to both the ACCME standards and the new AMA standards, and also signed on to the Council of Medical Specialty Societies’ Code for Interactions with Companies.

Finally, some issues of interest to palliative care physicians were referred for further study by the AMA. The Florida Delegation sponsored a resolution asking the AMA to study the issue of national or regional drug shortages, a problem that has profoundly affected palliative care specialists over the last several years. Additionally, AAHPM supported studying the content of patient navigators programs to enhance their consistency. The AAHPM Delegation to the AMA will make the findings of the reports available to Academy members when that information becomes available.

Beyond the annual meeting, our collaboration with members of the PPMSSC continues. This summer, we’ll develop comments on a resolution addressing the right of access to medication for pain relief that will be presented later this year at the World Medical Association meeting. In the meantime, if there are issues that you believe we should take to the “House of Medicine,” I welcome your thoughts. I also hope that if you’re not an AMA member, you will consider joining? (be sure to specify HPM as your specialty if you do) – AAHPM’s representation and participation is dependent on having a sufficient number of Academy members among the AMA’s ranks.

Eager Medical Students Learn about Palliative Medicine

by Emily Muse, AAHPM Manager, Communities and Programs

Saturday was the opening of the American Medical Association House of Delegates Annual Meeting 2011. One of the featured events was the eighth annual AMA-MSS Medical Specialty Showcase.
The American Academy of Hospice and Palliative Medicine was invited to exhibit at this event and took the opportunity to educate current medical students about the field of Hospice and Palliative Medicine.

Eager medical students visited booths exploring what options may be available to them. In narrowing down these career directions they asked a lot of questions, “Is HPM strictly for Family Medicine Residents ?”, “How long is a Fellowship in HPM? ”, “Can I practice HPM if I am a pediatrician?” , “What are the boards that sponsor this subspeciality” and “How many HPM fellowship programs are there?”. By the halfway point of the day I was “questioned out”! It was then that a young gentleman approached the booth. Before I could speak, he immediately introduced himself and said
“My Dad is a member of your organization, he just took the certification exam, I felt like I needed to stop by. I am not sure this is the right career path for me, but I know what a difference Palliative Care makes.”
It was so sincere and genuine, I almost asked if he would like to stay and work at the booth for the rest of the allotted time! While he moved on through the crowd investigating other medical specialties and subspecialties I was reminded that Hospice and Palliative Care is much more than the answers to the basic questions about fellowship. It is a philosophy of care that is driven by clinicians committed to patients as they navigate life limiting or life challenging conditions.

Strawberry Shakes, an Ocean View and a Wedding

by Jen Fuhrman-Kestler, AAHPM e-Marketing Manager

“FYI…we’re getting hitched tomorrow.”

This was the text I received from my fiancé as I sat in the opening session of a membership and marketing conference. Although he made me chuckle with his deliberate flippant wording, I quickly understood the significance of what was about to happen within the next 24 hours.

My now mother-in-law, Barb, has been in poor health for the past few years, and has gone through a myriad of medical treatments for her many different serious illnesses. After a stay in the ICU, she decided to move to hospice.

Being an employee of AAHPM, and advocate of palliative care, I was pleased with her decision to focus on quality of life and relieved that her uncomfortable symptoms would be managed.

The team at Shell Point Hospice has helped align a care plan with my mother-in-law’s goals. She is a strong and independent woman, never afraid to voice her opinion. Her first request was a view of the water. Her room on the fourth floor overlooks a lagoon filled with manatees, dolphins and tarpon. After being in the ICU and limited to a few spoonfuls of ice chips, nothing sounded better to her than a strawberry milkshake. Removing all the limitations and restrictions and allowing her to enjoy her remaining days has made Barb very happy, but the greatest gift Shell Point was able to give her was perhaps the most unconventional.

When Barb’s prognosis meant that she would not be able to make our late July wedding, Shawn and I decided to bring the wedding to her. After my conference, I got the first flight to Fort Myers. The next morning, we stopped by the Publix to pick up some flowers and a small cake. When the woman at the bakery asked if the cake was for a special occasion, and we answered “our wedding,” she looked as if she didn’t believe us. We arrived at the hospice and spoke with the chaplain, Dewey. He quickly got to know Shawn and me, and within a half an hour, we had a ceremony. Michelle, the social worker, took photos, and three of Barb’s closest friends joined her to witness our promise to spend the rest of our lives making one another happy.

We are so grateful that we could share our wedding with Barb, and so appreciative of the work done by the hospice team to accommodate our rather unusual request. It was a tear-filled day, but each one shed was the result of love. Barb was beaming and counted it as one of the single-greatest joys of her life. Shawn and I were beaming too.

Lessons Learned at the ACP Meeting: Where do we go from here?

Steven (Skip) Radwany, MD, FACP, FAAHPM, is the Medical Director of Summa Health System’s Palliative Care and Hospice Services, and Professor of Medicine, Northeastern Ohio Universities Colleges of Medicine and Pharmacy. Dr. Radwany is the AAHPM Ethics, Advocacy and External Awareness Strategic Coordinating Committee Chair.

This comes in follow-up to my post a couple of months ago regarding our relationships within organized medicine and academic medicine via the Academy. I recently attended the American College of Physicians (ACP) Annual Meeting in San Diego, California, from April 5-10, 2011. I was able to obtain some of those valuable Maintenance of Certification Points during a pre-course in order to finalize preparations for my Geriatrics re-certification.

As always, this ACP sponsored meeting offered hundreds of excellent presentation from which to choose. The schedule exhibited great depth and breadth in with one significant exception:

Out of the hundreds of subspecialty and generalists offerings, including a complete track for hospital medicine, there were only 2 explicit Hospice and Palliative Medicine offerings on the schedule. These were provided by Jean Kutner, AHHPM Board Member and Keith Swetz, AAHPM Member.

Under listing of topical areas on the schedule included all of usual suspects: Cardiology, Dermatology, Endocrine, Geriatric Medicine, Gastroenterology, etc., yet Hospice and Palliative Medicine did not appear to be recognized as a distinctive or important specialty.

Nonetheless, the largest proportion of certified Hospice and Palliative Medicine specialists are internists. Additionally, the largest proportion of Hospice and Palliative Medicine Fellowship Programs are housed in or attached to Internal Medicine Programs. Thus Internal Medicine and Hospice and Palliative Medicine are clearly joined at the hip. Yet the relative absence both in name and person from Internal Medicine’s largest annual meeting suggests a bit of a disconnect.

We must collaborate extensively with Internal Medicine generalists and subspecialists in order to provide the highest quality care to our patients. We certainly need to be fully recognized and able to stand tall amongst our fellow Internal Medicine subspecialties. Some of the disconnect could reflect the integrative character of out specialty, yet General Internal Medicine, Geriatric Medicine, and Hospital Medicine all have prominent roles in this annual meeting.

Another barrier or concern might be the large number of sponsoring general specialties from which one can enter the field of Hospice and Palliative Medicine including Radiology, Pediatrics, Neurology, etc. This broad “ownership” of Hospice and Palliative Medicine may dilute the attention of organized Internal Medicine to our field though dual sponsorship of Geriatrics by Family Medicine and Internal Medicine has had no such effect.

So, where do we go from here? The concern I express above comes attached to the concern I expressed previously about HPM’s lack of recognition within the Alliance for Academic Internal Medicine. We must be visible and proactive, and we must communicate with our own Academy about existing or potential external relationships or roles we might have in other areas of organized medicine. Also, we should accept any invitations to speak at meetings such as the ACP’s and participate in leadership roles whenever possible. Sometimes to get a seat at the table you need to bring your own chair and politely elbow your way in.

And for those ACP members out there, the site below would allow you to submit a clinical skills workshop for the 2012 meeting or a presentation for the 2013 meeting:

http://www.acponline.org/meetings/internal_medicine/2011/meeting_proposals.htm