Advancing PCHETA: We Need YOU!

By Gregg VandeKieft, MD MA FAAFP FAAHPM
Chair, AAHPM Advocacy & Awareness Strategic Coordinating Committee

This week (4/5/16), Senator Tammy Baldwin (D-WI) (shown in photo addressing Academy leaders during AAHPM’s 2015 Capitol Hill Days) reintroduced the Palliative Care and Hospice Education and Training Act (PCHETA) in the U.S. Senate as S. 2748. The bill is already pending in the U.S. House (H.R. 3119) where it enjoys the support of 99 bipartisan cosponsors. Having served as co-chair of AAHPM’s Public Policy Committee the last two years, and as a regular member of the committee prior to that, it has been gratifying to see the advancement of this legislation that the Academy worked so long to develop.

PCHETA will help address the current palliative care workforce shortage by expanding opportunities for interdisciplinary education and training in the field, including establishing education centers and career incentive awards for physicians, nurses, physician assistants, social workers and other health professionals. The bill would also implement an awareness campaign, to inform patients and health professionals about the benefits of palliative care and hospice and the services available to support patients with serious or life-threatening illness, as well as direct funding toward palliative care research to strengthen clinical practice and health care delivery. (Access a bill summary.)

As a physician specializing in hospice and palliative medicine, I am excited about PCHETA’a potential to substantially impact the care of patients and families facing serious illness. At the same time, I’ve learned through my involvement in grassroots advocacy that the process requires focus and perserverence. An earlier, more limited version of the bill (the Palliative Care Training Act) was introduced back in 2004. We introduced an expanded PCHETA in Congress in 2012, and have reintroduced in each of the subsequent congressional sessions. This Congress, the bill was further expanded. AAHPM worked with other stakeholders to add new provisions related to nurse workforce training, palliative care awareness, and research funding.

We look to build support year by year… it’s just a part of the policy process. (I think this is what the German philosopher Max Weber meant when he described politics as the “strong and slow boring of hard wood.”)  Further, we know legislation like this rarely passes on its own. Bills are typically packaged together in a broader theme, so we’ll look for a vehicle to which PCHETA (or even parts of the bill) could be attached. In the meantime, it’s important to keep building momentum and to keep our eye on the goal. The introduced legislation offers us a chance to educate members of Congress about our field, our patients, and the need to expand access to palliative care and build the workforce accordingly. Reaching a certain threshold of support will allow us to push for a hearing. Getting lawmakers on board as cosponsors of PCHETA also builds visible support so, when the opportunity presents itself, there are members of Congress to push it over the finish line and know that people back home are watching.

So, today, I encourage you to take a moment to reach out to your elected officials and ask them to support PCHETA Policymakers need to understand the unique needs of patients with serious illness. Tell them your stories from the front lines of health care. Believe it or not – hearing from an “expert” constituent really does make a difference!

Here are a few ways you can be the voice for your patients and the field and help advance PCHETA:

  • E-mail your members of Congress and urge them to cosponsor PCHETA. Be sure to define and localize the benefit. An action alert with suggested talking points is available at AAHPM’s Legislative Action Center, making it easy to look up your lawmakers and send a personalized e-mail.
  • Engage in media outreach. You can write a letter to the editor (palliative care workforce needs; need for broader access to palliative care) or participate on social media (follow your member of Congress; use #PCHETA and #HPM)
  • Request time to meet with your members of Congress during the District Work Periods (they work in their district or state office about one week each month and are there many weekends) or attend a Town Hall meeting or other event in which your Member participates. Check out their websites, and sign up for their e-mail updates to learn of local events and opportunities.
  • Invite your members of Congress to visit your practice. This is a very effective way to directly show them what you do and the important impact on patient care.
  • If you already have a relationship with a federal lawmaker, or plan to be in DC and want help arranging a meeting with your members of Congress to discuss PCHETA, e-mail AAHPM’s public policy team at advocacy@aahpm.org.

Don’t forget the words of Thomas Jefferson, “We in America do not have a government by the majority. We have a government by the majority who participate.”

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

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

Special Series on Measuring What Matters

Concordance of Advance Care Plans with Inpatient Directives in the Electronic Medical Record for Older Patients Admitted from the Emergency Department
Corita R. Grudzen, Philip Buonocore, Jonathan Steinberg, Joanna M. Ortiz, Lynne D. Richardson, and the AAHPM Research Committee Writing Group

Original Articles

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.
Arif H. Kamal, Janet H. Bull, Steven P. Wolf, Keith M. Swetz, Tait D. Shanafelt, Katherine Ast, Dio Kavalieratos, Christian T. Sinclair, amd Amy P. Abernethy

Are Hospice Admission Practices Associated with Hospice Enrollment for Older African Americans and Whites?
Kimberly S. Johnson, Richard Payne, Maragatha N. Kuchibhatla, and James A. Tulsky

Special Article

Unmet Supportive Care Needs in United States Dialysis Centers and Lack of Knowledge of Available Resources to Address Them
Stacey Culp, Dale Lupu, Cheryl Arenella, Nancy Armistead, and Alvin H. Moss

Palliative Care Rounds

Locked-In Syndrome:  Case Report and Discussion of Decisional Capacity
Samuel Maiser, Ashish Kabir, David Sabsevitz, and Wendy Peltier

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

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

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

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

Special Series on Measuring What Matters

Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting
Robert Gramling, Susan Stanek, Susan Ladwig, Elizabeth Gajary-Coots, Jenica Cimino, Wendy Anderson, Sally A. Norton, and the AAHPM Research Committee Writing Group

Special Article

Methodological Research Priorities in Palliative Care and Hospice Quality Measurement
Sydney Morss Dy, Keela Herr, Rachelle E. Bernacki, Arif H. Kamal, Anne M. Walling, Mary Ersek, and Sally A. Norton

Review Article

Sickle Cell Disease: A Review of Non-Pharmacological Approaches for Pain
Hants Williams and Paula Tanabe

Original Articles

The Burden of Polypharmacy in Patients Near the End of Life
Michael J. McNeil, Arif H. Kamal, Jean S. Kutner, Christine S. Ritchie, and Amy P. Abernethy

Does Increasing Homecare Nursing Reduce Emergency Department Visits at the End of Life? A Population-Based Cohort Study of Cancer Decedents
Hsien Seow, Lisa Barbera, Reka Pataky, Beverley Lawson, Erin O’Leary, Konrad Fassbender, Kim McGrail, Fred Burge, Melissa Brouwers, and Rinku Sutradhar

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

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

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

Original Articles

Differences in Physicians’ Verbal and Nonverbal Communication with Black and White Patients at the End of Life
Andrea M. Elliott, Stewart C. Alexander, Craig A. Mescher, Deepika Mohan, and Amber E. Barnato

The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU
Janet J. Lee, Ann C. Long, J. Randall Curtis, and Ruth A. Engelberg

“Doctor, Make My Decisions”: Decision Control Preferences, Advance Care Planning, and Satisfaction with Communication Among Diverse Older Adults
Catherine Chiu, Mariko A. Feuz, Ryan D. McMahan, Yinghui Miao, and Rebecca L. Sudore

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

New FAAHPM – Kimberly A. Bower, MD HMDC FAAHPM

Congratulations to Dr. Kimberly Bower who recently earned the designation Fellow of the American Academy of Hospice and Palliative Medicine. This new Fellow of the Academy was asked – Who would you consider your primary mentor and what have you learned from him/her? We are sharing her answer in this post.

It is only through the gifts of multiple mentors that I have developed in my skills as a palliative medicine physician. Each pearl of wisdom that I have gained from my teachers has led to the fundamental lesson that it is important to see beyond the patient who you are treating to the person for whom you are caring. Though each mentor has taught me so much, here are the pearls from my wise teachers that standout.
Dr. Laurel Herbst: The goal is to help people find meaning and value in their lives, but first you have to make them feel comfortable and safe.
Dr. Julie Prazich: Always take the time to learn and use your patient’s name.
Dr. Frank Ferris: Don’t be dissuaded by your patient’s negative emotions. Show up every day and be present.
Dr. Charles von Gunten: Don’t answer the first question you are asked. Explore further to understand the meaning behind the question.
Dr. Charles Lewis: It’s not taking a history it’s listening to your patient’s story.
Rosene Pirrello, BPharm, RPh: We spend a lot of time stuck in the past or thinking about the future. Take a deep breath and stay in the present moment.
JoAnne Auger, RN: Our language matters. Use the vocabulary of compassion.
The hospice team: Be mindful, take care of yourself, and stay centered.
To all of the great palliative medicine teachers in our field and to the patients from whom I learn so much I extend my deepest gratitude.

Advancement to fellowship status within the academy honors dedication to and scholarship in the field of the hospice and palliative medicine. This distinction represents a minimum of 5 years of membership, participation in AAHPM activities, letters of recommendation, and board certification in hospice and palliative medicine. Dr. Bower will receive the designation during the Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association in Chicago, IL on Saturday, March 12, 2016.
Check back regularly for posts from other Fellows.

Retreat into Learning and Wisdom

The AAHPM Research Scholars Program facilitates participation for AAHPM members to attend the Annual Kathleen M. Foley Palliative Care Retreat and Research Symposium of the National Palliative Care Research Center (NPCRC), cosponsored by the Hospice and Palliative Nurses Association (HPNA), American Cancer Society (ACS), and AAHPM. The 2015 event was held October 20 – 22 in Jackson Hole, Wyoming. Below are some reflections from this year’s scholarship winners.

“This year’s retreat was by far the most inspiring conference I have attended thus far in my career. The location was serene and peaceful in Jackson Hole, and around every corner was a preeminent thought leader in palliative care. I was in awe of everyone’s tremendous accomplishments and passion for their work. I loved being able to bounce ideas off some of the most powerful minds in the field, and I felt honored that these individuals seemed truly interested in what I was saying. I felt that, by simple virtue of the fact that I was invited to be there, my views and ideas were important and worth listening to. It was a validating feeling. I left Wyoming with a renewed sense of energy to move my own work forward, and with many new colleagues and friends.”

Kavita V. Dharmarajan, M.D., M.Sc.
Assistant Professor of Radiation Oncology and Palliative Medicine
Department of Radiation Oncology
Brookdale Department of Geriatrics and Palliative Medicine
The Mount Sinai Medical Center
New York, NY

“I wanted to thank AAHPM again for giving me the opportunity to attend the NPCRC retreat. It was a tremendous privilege to be able to attend and indeed one of the most valuable experiences of my career so far. I was in awe and near disbelief seeing the guest list for the conference – it was a who’s who of palliative care and was practically my PhD literature review come to life! I had the opportunity to meet privately with so many including Diane Meier, Scott Halpern, Joan Teno, Tony Back, James Tulsky and reconnect with others I hadn’t had the opportunity to see in a while such as Randy Curtis, Sydney Dy, Christine Ritchie, and many others. Thank you so very much!

Elizabeth Dzeng, MD, MPH, MPhil, MS
Assistant Professor of Hospital Medicine and Social and Behavioral Science
University of California, San Francisco

“I felt honored to be amongst so many palliative care expert researchers. I was very pleased with the welcoming spirit of everyone. The setting was perfect. Although an intensive two days, it was a relaxed atmosphere and the prodigious learning environment. It was well balanced with free time to explore the environment and also have the opportunity to get to know one another. As a new investigator, I was able to have discussions to assist me with moving my research forward. Hearing successful experiences of senior investigators gave me an atlas to navigate not only the scientific field of PC research but my individual career development. It was also good to interact with other junior investigators and develop possible, future collaborative relationships.

The overall wealth of information and research experience was infinite. Everyone was open to sharing their experience and made me feel as though I have something valuable to offer the field and know that there is support in my development.”

Danetta E. Sloan, PhD, MA, MSW
IRTA Post Doctoral Fellow
National Institutes of Health
Pain and Palliative Care Service
Bethesda, MD

“In October, I got to attend one of the most remarkable retreats in palliative care as an AAHPM Research Scholar: The Foley Retreat. Surrounded by the beauty and mountain air of Jackson Hole, the retreat fostered an unbelievable degree of connectivity so that more junior investigators, like me, were able to connect with a variety of individuals to learn from, develop collaborations that previously didn’t exist, and be part of conversations that felt like a form of improvisation. It was incredible. Thanks to everyone at AAHPM for supporting the research scholars program! I am very grateful to be a part of it.”

Carey Candrian, PhD
Assistant Professor | University of Colorado School of Medicine | Division of General Internal Medicine
Protocol Specialist | Palliative Care Research Cooperative Group (PCRC)

“Thank you so much for the opportunity of coming to the Palliative Care Research Retreat and Symposium—it was amazing! It was inspiring to be amongst the thought leaders in the field, and to see the innovative research that is driving the field forward. I look forward to being able to contribute. =)”

Jessica R. Bauman, MD
Assistant Professor, Department of Hematology/Oncology
Fox Chase Cancer Center
Philadelphia, PA

New FAAHPM – Craig D. Blinderman, MD MA FAAHPM

Congratulations to Dr. Craig Blinderman who recently earned the designation Fellow of the American Academy of Hospice and Palliative Medicine. This new Fellow of the Academy was asked – Who would you consider your primary mentor and what have you learned from him/her? We are sharing his answer in this post.

“My primary mentor is the late Andy Billings. Andy may not have known the extent to which he influenced my thinking about patient care, but in our meetings and conversations about patients, I was able to sense the degree to which he was genuinely curious about patients, about medicine, about why we might choose certain medications, or therapeutic approaches, etc. His need to know the evidence and to challenge conventional ways of clinical reasoning with a broader, holistic and fundamentally ethical approach, allowed me to see just how deep this practice of palliative medicine can really be. When I left MGH to take on the role as Director of the Adult Palliative Care Service at Columbia University Medical Center, I felt Andy’s presence with me at every turn. I would often call Andy to make sure that my decisions were reasonable. That I was actually seeing the picture for what it was. That I was considering all of the complexities in each decision. Often he would agree that I have indeed looked at the situation in a careful and discerning way. This gave me enormous confidence as a relatively young leader of a clinical palliative care service in a complex and large academic institution. I saw in Andy the integrity of the profession of medicine and the commitment to education and the advancement of the field of palliative medicine. With his encouragement and wisdom, I found opportunities to create a more dynamic and integrated palliative care service, which both expanded in scope and recognition. The fruits of his mentorship and wisdom can be felt throughout the halls of P&S, where I often teach medical students, and at the bedside of patients and families where residents and fellows gather to learn how to best care for the suffering patient and family. We have written together, taught together, and helped patients together. In each of these domains, I have found a friend and supporter, someone who believed in what I am capable of doing, long before I ever believed I was.”

Advancement to fellowship status within the academy honors dedication to and scholarship in the field of the hospice and palliative medicine. This distinction represents a minimum of 5 years of membership, participation in AAHPM activities, letters of recommendation, and board certification in hospice and palliative medicine. Dr. Blinderman will receive the designation during the Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association in Chicago, IL on Saturday, March 12, 2016.
Check back regularly for posts from other Fellows.

Nidhi in Palliativecareland

by Nidhi Khosla, PhD, MPH

I woke bleary eyed at 4 am for my 4:30 am shuttle pick up on October 20, 2015. The shuttle would take me from Columbia, Missouri to St. Louis airport where I was supposed to catch a flight to Denver. At Denver, I would board a flight to Jackson Hole to attend the much awaited Kathleen Foley Palliative Care Retreat. As a junior investigator with a PhD in Public Health and research interests in reducing health disparities, I was looking forward to this golden opportunity.

The shuttle driver actually arrived at 4:15 am because he had several pickups. My fellow riders to St. Louis were clearly in some other time zone, chattering away in the darkness in English and what sounded like an Eastern-European language, over the 2-hr journey. Sleepless, I wondered if I might meet a fellow passenger on the Denver-Jackson Hole flight who was heading to the same retreat. When we landed at Jackson Hole, the marching band was conspicuous by its absence. Surely, a plane that arrived nearly full with luminaries of the palliative care world deserved a welcome from a marching band or a resounding 21 gun salute?

The retreat eventually started after the attendees had been coaxed to actually enter the hall rather than linger at the doorway over the ‘hellos’ and ‘great to see yous’. My eyes darted from name tag to name tag. They were all there! The names of the authors in my literature review folder concerning end of life and palliative care, had metamorphosed into actual humans who were walking and talking to each other around me. My literature review had miraculously come alive! The official welcome remarks revealed the wide diversity in attendees that included 3 JDs, 61 Medical Doctors/DOs, Doctors of Philosophy, Registered Nurses and Social Workers.

In the first presentation, I learned that high intensity end-of-life care was not unique to the United States, with other developed countries also providing aggressive care. The parallels to everyday behaviors such as ‘do you like vanilla or chocolate ice-cream?’ and the interesting experiments derived from Economics and Psychology generated several interesting ideas about advance care planning and how that might be encouraged. The presenter concluded that we need to build better advance directives and motivate patients to complete them, engage physicians and encourage them to overcome their tendency to procrastinate.

Over dinner, I sat with the AAHPM staff and scholarship/award winners and learned more about them and then crashed in a huge suite that had more doors than my apartment. The next morning started with an excellent breakfast and a very well-organized poster presentation. I think more meetings need to adopt this method of small-groups led by leaders. The groups moved systematically from poster to poster, thus creating a different kind of small-group learning.

The breakout groups offered a wide variety of learning themes. The first presentation in the group I attended focused on breast cancer caregiving. One of the elements that struck me most was that most caregivers for breast cancer patients are men unlike other conditions where caregivers are female. In other presentations, I learned about Dignity Therapy and how doctors may undermine the impact or weight of their or caregivers’ decision-making preferences on that of the patients’. Learning about the challenges of the different presenters in data collection and hearing suggestions from the audience to resolve these was a good learning experience.

There was a great presentation ‘Demystifying the NIH Process’ on getting funding, with Program Officers from NIH available to share their perspective and talk about trends in funding and important dos and don’ts. I am sure experienced and novice grant seekers like me found this excellent presentation very useful. I listened closely which was very important especially given that the handouts were printed in what seemed to be font size 4. I later followed this up with one-on-one conversations with the Program Officers to get feedback on some ideas.

Just when I thought I had attended all possible excellent presentations, I got to hear Rebecca Aslakson. I had met her earlier this year through a mutual colleague at Johns Hopkins. A recommendation letter from Rebecca enabled me to attend the retreat. Rebecca’s extremely stylish presentation on her research trajectory, peppered with humor and insight into patient care challenges and triumphs, led us smoothly from one topic to another. It captured the history of palliative care in the Intensive Care Units, among surgeons and referenced books on palliative care and the surgery culture. Rebecca shared that there are different moral economies and different bottom lines in medicine. Death is the enemy in surgical cultures. In contrast, for Intensive Care Unit nurses, suffering is the worst enemy. The “covenant” between patient and doctor is part of a surgeon’s identity.

Palliative care-related experiences of surgical Intensive Care Unit patients and families led Rebecca to research into peri-operative care and involving patients via PCORI mechanisms. Since people lose decision making capacity for at least some time, the research team proposed advance care planning (ACP) and did a scan of ACP instruments. This led to research on content and instrument-based approaches, studying ACP conversations, preparing story boards and eliciting public feedback through venues such as a stall at the Maryland State Fair. Many patient-doctor conversations about ACP are couched in terms of faith, which led her to start the UNITED project with churches for using religious language and input into ACP conversations.

Finally, I attended a Mock Study Section which mimicked how actual reviews are done. Excellent examples of sample grants were provided and there was a rich discussion about the grants’ strengths and weaknesses.

I had arrived at the retreat bleary-eyed and left wide-eyed, excited at the vast range of possibilities in research that can improve quality of life for patients and caregivers. The well-rounded experience covered everything from research ideas to how to fund them and provided invaluable networking opportunities. The retreat made me inspired and enthused with the dedication and brilliance of the presenters and I got new ideas on how I could contribute to patient-centered palliative and end-of-life care.

Nidhi Khosla, PhD, MPH was chosen as one of six AAHPM Research Scholars this year and received funding to participate in the Annual Kathleen M. Foley Palliative Care Retreat and Research Symposium of the National Palliative Care Research Center (NPCRC). She is an Assistant Professor at the Department of Health Sciences, University of Missouri, Columbia. Her research involves palliative and end of life care preferences of the growing number of South Asians (persons with origins from India, Pakistan, Bangladesh, Nepal, Sri Lanka, Bhutan and Maldives) in the U.S.

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

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

Special Article

The Business Case for Palliative Care: Translating Research Into Program Development in the U.S.
J. Brian Cassel, Kathleen M. Kerr, Noah S. Kalman, and Thomas J. Smith

Original Articles

Complex Decongestive Lymphatic Therapy with or without Vodder II Manual Lymph Drainage in More Severe Chronic Postmastectomy Upper Limb Lymphedema: A Randomized Non-Inferiority Prospective Study
Tomasz Gradalski, Katarzyna Ochalek, and Joanna Kurpiewska

Interdisciplinary Palliative Care for Patients with Lung Cancer
Betty Ferrell, Virginia Sun, Arti Hurria, Mihaela Cristea, Dan J. Raz, Jae Y. Kim, Karen Reckamp, Anna Cathy Williams, Tami Borneman, Gwen Uman, and Marianna Koczywas

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