AAHPM Represented at NQF Palliative and End-of-Life Care Meeting

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 kast@aahpm.org.

Highlights of the March Issue of the Journal of Pain and Symptom Management

Special Series on Measuring What Matters

Adherence to Measuring What Matters Measures Using Point-of-Care Data Collection Across Diverse Clinical Settings
Arif H. Kamal, Janet Bull, Christine S. Ritchie, Jean S. Kutner, Laura C. Hanson, Fred Friedman, Donald H. Taylor, Jr., and the AAHPM Research Committee Writing Group

Original Articles

Tai Chi Exercise for Cancer-Related Fatigue in Patients with Lung Cancer Undergoing Chemotherapy: A Randomized Controlled Trial
Li-Li Zhang, Su-Zhen Wang, Hong-Lin Chen, MD, and A-Zhen Yuan

Advance Care Discussions: Pediatric Clinician Preparedness and Practices
Amy Sanderson, Amber M. Hall, and Joanne Wolfe

Brief Report

Characterizing the Hospice and Palliative Care Workforce in the U.S.: Clinician Demographics and Professional Responsibilities
Arif H. Kamal, Janet Bull, Steven Wolf, Greg Samsa, Keith Swetz, Evan Myers, Tait Shanafelt, and Amy P. Abernethy

Chicago-bound? What to Do and Where to Eat

Are you heading to Chicago to join AAHPM for the Summer Institute? Need ideas on what to do while you are here? Find out what locals have suggested below:

Attend the Chicago Air & Water Show, August 15-16 for the largest free admission air and water exhibition of its kind in the US. The show will feature daredevil thrills in the air and on the water with the Chicago Skyline as a background – a must-see event. Some other sites you’ll want to visit areNavy Pier or step out onto the Skydeck at Willis Tower. Check out one of the many great institutions Chicago has to offer: Art Institute of Chicago, Shedd Aquarium, The Field Museum, Museum of Science and Industry, Lincoln Park Zoo, Museum of Contemporary Photography, or Adler Planetarium and Wrigley Field. Enjoy the surroundings of one of the beautiful parks in the city including: Lincoln Park, Grant Park, Millennium Park, and Clarence F. Buckingham Memorial Fountain. Sign up for a tour through the Chicago Architecture Tours and visit iconic skyscrapers, elegant hotels or homes designed by Frank Lloyd Wright.
Chicago Traveler will supply you with many more ideas for your trip.

Do you have suggestions on where to eat? Submit suggestions in the comments. Some nearby options include:
Mercat a la Planxa – Tapas
McCormick & Schmick’s Seafood & Steaks
Buddy Guy’s Legends – Blues club with Cajun and Creole food
Acadia – Seasonal American
Lou Malnati’s Pizzeria

AAHPM Summer Institute
Designed with your professional development needs in mind, select the courses based on your career goals:
-AAHPM Leadership Forum: Ascend (August 16-18)
-Intensive for CEOs and CMOs: Building an Exceptional Physician/Executive Leadership Team (August 17)
-ICD-10 Boot Camp for Hospice and Palliative Care (August 17)
-Hospice Medical Director Conference (August 18-19)
Learn more and register at www.aahpm.org/SummerInstitute or call 847.375.4712.

HMDC PREP – Assess your knowledge of hospice medicine

AAHPM launched a comprehensive study tool, the HMDC PREP, for those preparing for the Hospice Medical Director Certification Exam coming up in May. The tool includes 75 case-based questions, rationales and active links to references. According to Dr. Porter Storey, executive vice president of AAHPM and a reviewer of HMDC PREP, “This new online tool is a valuable study aid and review of a number of important aspects of our field. Clinical care, administrative issues, and team dynamics are all represented in these carefully crafted vignettes and discussions. It not only teaches you a lot, but helps you focus your studies on where they will help you the most. Highly recommended!”

Whether you are studying for the exam, are new to hospice, or want to assess your knowledge after years of experience, you’ll enjoy using this online tool. To learn more about HMDC PREP or purchase your copy, visit aahpm.org.

Submitted by Julie Bruno, AAHPM Director of Education and Training.

Findings of first empirical data on contributions of chaplain interventions in palliative care

By Eric J. Hall, president & CEO, HealthCare Chaplaincy Network

When the latest Clinical Practice Guidelines for Quality Palliative Care guidelines were announced at last year’s AAHPM annual conference, project co-chair Betty Ferrell, PhD, RN, FAAN, FPCN, research scientist at City of Hope, said, “Quality palliative care includes all eight domains. If you are not providing excellent spiritual care, you are not providing palliative care.”

Nonetheless hospital administrators who are skeptical about the value of professional chaplaincy care need data about what chaplains do and their contributions to better patient care.

The first large-scale attempt at forming an evidence base for chaplaincy care effectiveness in health care has culminated in six studies funded by the John Templeton Foundation under a grant managed by HealthCare Chaplaincy Network. The findings were released the inaugural conference of HealthCare Chaplaincy Network’s first annual conference Caring for the Human Spirit: Driving the Research Agenda in Spiritual Care in Health Care March 31 – April 3, 2014, at the New York Academy of Medicine:

Spiritual Assessment and Intervention Model (AIM) in Outpatient Palliative Care for Patients with Advanced Cancer. University of California, San Francisco; Project Director, Laura Dunn, MD, Project Chaplain, Allison Kestenbaum, BCC
This is one of very few studies to provide an in-depth picture of spiritual care work with patients. No validated spiritual assessment tools have existed prior to this study. Even three sessions with a professional chaplain had important, positive effects for patients. The research raises the possibility that spiritual care should be studied as a potentially powerful intervention for patients with various serious illnesses, not just cancer.

Impact of Hospital-Based Chaplain Support on Decision-Making During Serious Illness in a Diverse Urban Palliative Care Population. Emory University (Atlanta); Project Director, Tammie Quest, MD, Project Chaplain, George Grant, ACPE
A diary study of 1140 chaplain-patient encounters demonstrated the value of chaplain-patient communication and revealed that more than half of chaplain visits focused on issues other than spiritual. The study also showed that conversations with patients were more likely to be about “practical matters” (family care, life review, medical care, work) than about “ultimate concerns” (expressed emotions, existential matters, spiritual/religious matters, physical symptoms).

Hospital Chaplaincy and Medical Outcomes at the End of Life. Dana Farber Cancer Institute (Boston):
Project Director, Tracy Balboni, MD, Project Chaplain, Angelika Zollfrank, BCC

The data from this study is a first step in furthering the understanding of how chaplaincy care influences patient well-being and medical decision making at the end of life.

Understanding Pediatric Chaplaincy in Crisis Situations, Children’s Mercy Hospital (Kansas City)
Project Director, John Lantos, MD, Project Chaplain, Dane Sommer, BCC

Researchers analyzed seven in-depth case studies that reveal how medical professionals utilize chaplains in the care of seriously ill children. They learned that most health professionals have little or no understanding of what chaplains do and that this has implications for patient and family care. Key findings showed that: tangible objects are very important (e.g., prayer shawls and teddy bears); physical interaction builds trust (e.g., eye contact).

Caregiver Outlook: An Evidence-Based Intervention for the Chaplain Toolkit. Duke University Medical Center (Durham, NC):Project Director, Karen Steinhauser. PhD, Project Chaplain, Annette Olsen, BCC
For the first time, researchers established that it is feasible for chaplains to use a standardized, low-cost phone-delivered intervention. This has important implications because the intervention is measurable, controllable and transferrable. Both religious and non-religious participants found conversations with the chaplain meaningful and without an agenda.

“What do I do” – Developing a Taxonomy of Chaplaincy Activities and Interventions for Spiritual Care in ICU Palliative Care. Advocate Charitable Foundation & Advocate Health Care (Chicago):
Project Director, Kevin Massey, BCC, Co-Principal Investigator, William Summerfelt, PhD

This study begins to explain how spiritual care is helpful by revealing a common language, list of activities, effects and outcomes for chaplains. The research showed that professional chaplains play a major role in helping patients express their wishes about end of life and advance care planning. The study generated 348 taxonomy items.

If you wish more detail about any of this research, please contact jsiegel@healthcarechaplaincy.org

Are You in Danger of Burnout?

Larry Beresford

Are accumulated job stresses affecting your ability to provide high-quality hospice and palliative medicine to your patients? Do you have strategies for easing or managing the stresses of this work? Given this field’s ongoing workforce challenges, it can’t afford to lose a single practicing hospice and palliative medicine physician to job stress or burnout.

The latest issue of the AAHPM Quarterly explores these issues in terms of their particular impact on hospice and palliative medicine and some of the ways experts recommend for getting a better handle on it. Meeting patients and families as they confront serious, advanced, incurable or terminal illnesses and helping them negotiate the changes these impose in their lives demands significant personal engagement. You put your heart on the line every day, but the careers of many veterans in this field testify to the fact that burnout is not an evitable consequence of that engagement.

We’d like to hear more stories of hospice and palliative medicine physicians’ struggles with job stress and burnout, successful or not. Comment below.

Advance Planning: More Than Care Decisions

There is much talk in health care, especially in the fields of palliative and end-of-life care about “Advance Care Planning”. And rightly so. For those with advanced illness, this process is critical to patients receiving the treatment they want and only the treatment they want. The process done well clearly improves patient’s perceived quality of life, reduces the burden of suffering, raises patient satisfaction, and also seems to reduce overall health care costs.

For a medical treatment team, whether palliative care or other, the process often needs to be focused on decisions about health care choices. Those are our immediate concern and often those concerns truly need to be addressed in the very short term such as making decisions about resuscitation with an elderly patient suffering from heart failure and pneumonia.

However, there is also a class of “patients” emerging who, while they have a diagnosis of HIV/AIDS or “terminal” cancer are not necessarily near death and, because of maintenance therapies that can often have very controllable side effects, look and feel fairly healthy. They can therefore do lots of “normal” things and lead a “normal” life. The other day I saw Magic Johnson on TV announcing he has purchased yet another sports team in LA. These people may not be so different from someone like me. I’m healthy for my age but will soon be at the age where I will be forced to begin accepting Social Security payments whether I like it or not. I clearly have a lot less of my life ahead of me than I have behind me.

In this situation, certainly the decisions we generally associate with advance care planning are critical. Under what circumstances do I want to be kept alive if I can no longer make decisions for myself and by what methods? But as I begin to seriously engage this phase of my life, I increasingly realize that there are questions that go far beyond this which, if I engage them seriously, will make all of the life I have left more complete and fulfilled. The first issue for me seems to be that if there are things I want to do or a way I want to be sometime in my life, I need to be about creating that reality for my life now. And I can create much of that reality if I plan for it. However, this planning also means re-examining some assumptions about how I have lived my life. Do I really need the “security” of a steady job and is that security coming at a price that I no longer need to or want to pay because it is keeping me from other things I want to do? How many of my possessions would I really miss if I didn’t have them anymore? Do I continue to need to own a house with the responsibility that brings or can we be free of it?

These are not simple or easy questions. I have no intention to ever retire in the normal sense. I don’t even play golf and I don’t like either Florida or Arizona. I want to cook more and maybe learn Spanish. And I want to continue my professional journey down a road I still have intense passion for.

My point in all this is that, while advance care planning in the medical context is important, it is really only a part of a larger conversation. And this is not just about a bucket list either although that can be part of it. Ideally, it should be the end product of a much longer and intricate process of deciding how you want your life to be whether you have some idea of how much longer that life will be or not.

Certainly, for us as chaplains, I think we need to be much more intentional than we have been about engaging our patients and their caregivers in these larger issues for themselves. To the extent we can help patients explore whatever these kinds of questions are for them, we will help, not only make the decisions about Advance Care Planning, but create the lives that they want for themselves and those they love.

George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy

Final Rule in Regulatory Challenges—How are You Affected?

Larry Beresford

A dense, 49-page government document with a mouthful of a title, “Medicare Program; FY 2014 Hospice Wage Index and Payment Rate Update; Hospice Quality Reporting Requirements; and Updates on Payment Reform” was published in the Federal Register on August 7—with huge implications for hospices and their medical directors.

This Final Rule does much more than update the annual Hospice Wage Index. It also covers changes in hospice quality reporting, looming reform of the hospice payment system, and a range of other regulatory issues. Appropriate eligibility for hospice care remains a major focus for the government. But hospices face new requirements in spelling out the primary diagnosis for this eligibility, all related comorbidities and secondary conditions, what is related or unrelated to the terminal prognosis, and how all of the above should be coded on claims forms, described in physician narrative statements and certified by two physicians in their best medical judgment. Some terminal prognoses, notably adult failure to thrive and debility unspecified, will no longer be permitted as primary diagnoses for hospice admissions.

All of this means the role and responsibilities of hospice medical directors are growing. Read much more about the regulatory challenges they now face in the Quarterly. You can also see how AAHPM’s comments on the proposed rule compare to the final regulations in this side-by-side prepared by the Academy’s lobbying and consulting firm, Hart Health Strategies.

Coming to Grips with Evidence-Based Medicine

Steven Prior, MD

I started All Things Palliative (ATP) in December 2012 as a way to cope with the vast amount of medical evidence for which I, as a front-line palliative care physician, felt responsible. Of the many things I’ve learned over the past 10 months, the most eye-opening has been just how enormous this body of medical evidence really is.

I operate within a rather small subset of healthcare – Hospice and Palliative Medicine (HPM). By its nature, HPM overlaps with all other medical specialties, from pediatrics to geriatrics, interventional radiology to general surgery. HPM is also interdisciplinary – the very definition of HPM outlines its incorporation of spiritual, psychological, social and physical care. So as a clinician educator at a major U.S. academic medical center, I often struggled to keep abreast of the medical literature as it pertained to HPM. Relevant studies would be published in the HPM journals, of course, but also in those of nursing, chaplaincy, mental health, ethics and social work, not to mention frequent publications among the surgical and medical subspecialty journals.

ATP has been, primarily, an attempt to pull these scattered bits of data together into one place. It has seemed a sensible way for me to start coming to terms with evidence-based medicine’s “Big Data” challenge in the field of HPM.

ATP has accumulated essentially all English-language HPM medical news and research released since the site’s inception. Every day I review titles of over a thousand articles from medical journals, medical news sites, professional organizations, advocacy groups, blogs and lay press outlets. From this 1,000+ daily set, I cull about sixty relevant articles. Roughly two-thirds is original research; one-third is news of various sorts.

Continued at All Things Palliative Blog

Highlights of the October Issue of the Journal of Pain and Symptom Management (JPSM)

Listed below are a few articles from the most recent issue of the journal:

High Flow Oxygen and Bilevel Positive Airway Pressure for Persistent Dyspnea in Patients With Advanced Cancer: A Phase II Randomized Trial
David Hui, Margarita Morgado, Gary Chisholm, Laura Withers, Quan Nguyen, Clarence Finch, Susan Frisbee-Hume, and Eduardo Bruera

A Nationwide Analysis of Antibiotic Use in Hospice Care in the Final Week of Life
Jennifer S. Albrecht, Jessina C. McGregor, Erik K. Fromme, David T. Bearden, and Jon P. Furuno

Quality Indicators for Palliative Care: Update of a Systematic Review
Maaike L. De Roo, Kathleen Leemans, Susanne J.J. Claessen, Joachim Cohen, H. Roeline W. Pasman, Luc Deliens, PhD, Anneke L. Francke, on behalf of EURO IMPACT

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David J. Casarett, MD, MA, Senior Associate Editor, JPSM