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Palliative Care and Hospice Organizations Collaborate to Advance the Field

The National Coalition for Hospice and Palliative Care: Working together to coordinate, communicate, and collaborate on advocacy, quality, and beyond

Inaugural Issue #1 – What is the Coalition? Why is it Important?

Welcome to the first blog post from our Coalition. If you have attended a hospice or palliative care conference in the last few years, it is likely that you have heard the proverb, “If you want to go fast, go alone. If you want to go farther, go together.” The National Coalition for Hospice and Palliative Care (also referred to as the Coalition) is a critical mechanism for ensuring that the field goes far. Originally established by four organizations in 2002 to create a foundation for defining quality palliative care, i.e., National Consensus Project, Clinical Practice Guidelines for Quality Palliative Care, the Coalition is now comprised of nine national organizations representing clinicians from the full interdisciplinary team (physicians, nurses, social workers, chaplains, and physician assistants), researchers, and hospice and palliative care programs. The Coalition’s goals focus on four essential elements, the “Four C’s”: Cooperation, Communication, Coordination, and Collaboration.

Coalition Members


These nine hospice and palliative care organizations work independently to improve quality of life for seriously ill patients by addressing the needs of their constituencies in areas such as education, advocacy, quality improvement, research, etc. While each has been incredibly effective on its own, the field as a whole faces many challenges:

  • Rapid evolution of health care and health policy in the U.S.;
  • Rapid increase in the number of people who would benefit from palliative care and/or hospice services;
  • Rapid proliferation of new interventions/initiatives designed to address the high-need, high-cost populations (some with the patient and family in mind, some with cost savings in mind), creating much “noise” around the right way to care for these patients;
  • Continued misconceptions about what hospice and palliative care can offer and who is eligible for these services; and
  • Limited resources in our small field.

Using the Four C’s, the Coalition helps the field proactively address these challenges by convening representatives monthly from each organization to strategize on key public policy challenges; improve communication to avoid duplication of effort where possible; and share intellectual resources. We work together to respond to legislative and regulatory opportunities, and are structured to nimbly respond to significant opportunities and threats (e.g., the recent misrepresentation of palliative care by a U.S. Senator). But the most important function of the Coalition is to initiate and strengthen relationships across the field. As a result of the Coalition, members often feel more comfortable reaching out to each other individually as needed to clarify an issue, brainstorm ideas, and collaborate on new initiatives. By finding natural opportunities to work together, we strengthen each other and increase our impact – both within the field and to external audiences.

Our next post will describe the Coalition’s structure and its core activities and accomplishments. In the meantime, check out the Coalition’s new website where you can find more information about the work of our Coalition.

Amy Melnick, Executive Director, National Coalition for Hospice and Palliative Care

Stacie Sinclair, Center to Advance Palliative Care (CAPC) & Coalition Member

Highlights of the October 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
The Trial of Ascertaining Individual Preferences for Loved Ones’ Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making
Daniel P. Sulmasy, Mark T. Hughes, Gayane Yenokyan, Joan Kub, Peter B. Terry, Alan B. Astrow, Julie A. Johnson, Grace Ho, and Marie T. Nolan

Web-Based Tailored Psychoeducation for Breast Cancer Patients at the Onset of the Survivorship Phase: A Multicenter Randomized Controlled Trial
Jolien M. Admiraal, Annette W.G. van der Velden, Jenske I. Geerling, Johannes G.M. Burgerhof, Grietje Bouma, Annemiek M.E. Walenkamp, Elisabeth G.E. de Vries, Carolien P. Schr€oder, and Anna K.L. Reyners


One Size Does Not Fit All: Disease Profiles of Serious Illness Patients Receiving Specialty Palliative Care
Arif H. Kamal, Donald H. Taylor Jr, Benjamin Neely, Matthew Harker, Parampal Bhullar, John Morris, Lindsay Bonsignore, and Janet Bull


Opioid Prescribing Among Cancer and Non-cancer Patients: Time Trend Analysis in the Elderly Using Administrative Data
Lisa Barbera, Rinku Sutradhar, Anna Chu, Hsien Seow, Doris Howell, Craig C. Earle, Mary Ann O’Brien, Deb Dudgeon, Clare Atzema, Amna Husain, Ying Liu, and Carlo DeAngelis

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 Casarett, MD MA, Senior Associate Editor, JPSM

Participate in Mapping Community Palliative Care

The Center to Advance Palliative Care (CAPC), in collaboration with the National Coalition for Hospice and Palliative Care (NCHPC), is launching an exciting new initiative to build a comprehensive inventory of community palliative care programs across all service settings—including home, office/clinic, and long-term care.

While there is growing research demonstrating the positive impact of palliative care in these settings, there are no reliable data on (non-hospice) palliative care capacity outside of hospitals. Mapping Community Palliative Care will develop estimates of palliative care access in communities across the country and track growth over time. AAHPM is supporting this important project because it will promote the expansion of community palliative care by identifying models of service delivery and providing summary and comparative data for the field. And it will make it easier for patients, families, caregivers, and practitioners to find palliative care services in their community.

How can you help?

  • In order for this project to succeed, we need all community-based programs to participate. Complete a brief survey on the Mapping Community Palliative Care website to put your program on the map. Participation takes less than ten minutes.
  • Spread the word about the project by sharing this email with other community palliative care programs.
  • Follow AAHPM and @CAPCpalliative on Twitter and share posts about the project.

Participating programs will be highlighted in the Provider Directory at GetPalliativeCare.org, an online resource for palliative care information for people with serious illness and their families.

Visit the Mapping Community Palliative Care website to learn more and participate.

Poof! You’re a Caregiver

Hospice nurse and social worker, Katie Ortlip, came to her writing partner’s, Jahnna Beecham, aid when her father was dying. The two wrote the bookLiving with Dying: A Complete Guide for Caregivers as an instruction guide to understanding the dying process as a caregiver. Read an excerpt of Jahnna’s story below to dive into a firsthand account on the struggles and realizations about personal caregiving.

When I was suddenly thrust into the job of caregiver for my 90-year-old father whose long dormant prostate cancer had metastasized to his bones, I wanted to run. I’d already spent the previous eight years visiting my parents four or five times a week, going with them to every doctor’s appointment, including them in family dinners, outings, and celebrations, and sitting diligently by their sides when they were each in the hospital. Wasn’t it my brother’s turn?

I dove head first into the role of full-time caregiver and instantly became a frazzled lunatic. Dad was in pain, Mom was upset and confused, and I didn’t know how to help. The drugs Dad was given just made him loopy—he kept trying to leave the house through the fireplace. His regular doctor was on vacation, so I was frantically racing from new doctor to new doctor trying to get him some relief. He endured X-rays, MRI’s, and visits with cancer specialists while on heavy meds that made him unable to walk, get on the X-Ray table, or transfer from a wheelchair to my car. And still he was in pain.

I ran from my house to my parents, to my work, to school to get the kids, to the grocery store, to the drugstore, to my parents again, and back home. I had now added another full-time job to my day and in an effort to find more time, I cut out everything in my life that made me happy and healthy. I gave up my morning walk with my friend, weekly yoga class, and fun time with my kids. I grabbed handfuls of chocolate, potato chips, peanuts, and crackers (Mom’s five food groups) from her kitchen and gained 15 pounds, shouted at my parents and kids, and made no one happy.

Lucky for all of us, when Dad was put on hospice, my friend Katie Ortlip became his hospice social worker. Within 24 hours, he was assigned a wonderful nurse, his meds were adjusted (added 4 advil every 8 hrs. and reduced opioid dose), the equipment we would need for the next six months arrived, and Dad was finally pain free. I stopped panicking. Besides taking care of Dad, Katie O (as she is called in the hospice community) talked to me about the importance of taking care of myself. That included starting walking again with my friend, taking time to eat right, taking time for my family and friends, and hiring help.

Katie also gave me some quick tips to help me “Be here now.” Take Time to breathe––inhaling on a count of six, holding it, and then exhaling on six. Always sit when visiting my parents (This says, “I have time for you.”) Make sure the chair is close enough to my hard-of-hearing parents so I don’t have to shout, which automatically tenses your body.  Bring a healthy lunch or snack. Take time to eat, sitting down. (Notice the constant advice to “take time?”) Identify my father’s true needs—a driver for appointments and someone who will take time to listen to their concerns. Those simple tips helped me through Dad’s last months, days, and hours, giving me time to just be with my father. With the help of Katie and hospice, my father died in his own bed, surrounded by those he loved.

As I write this, I’m now caring for Mom, who is 93 and has dementia. She has moved in with my husband and me, which adds a whole new set of challenges, but this time I’m taking time to breathe and eat right (I’ve lost 30 pounds). And this is what I now know to be absolutely true:

  • Your loved one’s illness will never happen at a convenient time.
  • You won’t have enough time or money to help out the way you would like.
  • Just when you think you’ve got all the caregiving solved, something will happen to make it all fall apart and you’ll have to start over.
  • You will probably quarrel with a close family relative about how to give the best care possible.
  • At times you may feel overwhelmed by grief.
  • There will be moments when you will probably feel resentment followed quickly by enormous guilt.
  • You will start sacrificing your health for your loved one’s.
  • You might reach a point where you are burnt-out and absolutely certain that you cannot go one more day.
  • And if you don’t reach out to your community—friends, relatives, doctors, church, community center, and hospice, you will risk destroying your own health.

It truly does take a village. My village was, and still is, my husband, my friends, hospice, and Katie Ortlip.

Jahnna Beecham
Co-author with Katie Ortlip, RN, LCSW
Living With Dying: A Complete Guide for Caregivers
Available: Amazon.com and Livingwithdying.com

Bio: Jahnna Beecham most recently edited National Geographic’s Science Encyclopedia, which was released in the fall of 2016. Under the pen name Jahnna N. Malcolm, Jahnna Beecham and Malcolm Hillgartner have written more than 130 books for juveniles and young adults for Scholastic, Simon & Schuster, Random House, HarperCollins, Bantam and others.

Cambia Health Foundation Announces 10 New Sojourns Scholars to Advance Palliative Care

Elite group of physicians and nurses demonstrate strong leadership potential and commitment to expanding palliative care.

PORTLAND, Ore. (Sept. 20, 2017) – The Cambia Health Foundation has announced the acceptance of 10 new physicians and nurses into the Sojourns Scholar Leadership Program, the Foundation’s signature program to develop emerging palliative care leaders. With this new cohort, Cambia has now committed $7.2 million to cultivate 40 Sojourns Scholars from across the country who are working to advance palliative care.

The Sojourns Scholar program addresses a critical workforce development need and supports access to palliative care services. According to a 2016 report in the Journal of Palliative Medicine, “One-third of U.S. hospitals report no palliative care services of any kind, and access to palliative care in community settings (home, nursing home, assisted living) is limited for people who are not hospice-eligible. As a result, most people with serious illness are unlikely to receive the care they need throughout their course of illness.” Addressing these issues requires leadership, and by creating the Sojourns program, the Foundation has taken an active role in shaping the future.

The Sojourns Scholar Leadership Program is an initiative designed to identify, cultivate and advance the next generation of palliative care leaders. The new cohort was chosen following a rigorous selection process centered on their commitment to advancing the field of palliative care. Each scholar receives a two-year, $180,000 grant to support research, clinical, educational or policy projects. Scholars also receive one-to-one mentoring support and leadership training.

“The Cambia Health Foundation is focused on improving the consumer experience from birth through completion of life. Palliative care is inherently person-focused, and investing in future leaders ensures that people and families facing series illness are supported,” said Peggy Maguire, president and board chair, Cambia Health Foundation. “It is our hope that the seed that has been planted with these future leaders will inspire a workforce that delivers patient- and family-centered care across the entire nation.”

Listed below are the 2017 Sojourns Scholar Leadership Program Grant Recipients

  • Valerie Cotter, Nurse Practitioner, Johns Hopkins University School of Nursing: Advance care planning for primary care providers education program: Improving the quality of care for older adults with dementia
  • Andrew Epstein, Physician, Memorial Sloan Kettering Cancer Center: Integrating values-based advance care planning in a cancer center’s palliative care initiative
  • Matthew Gonzales, Physician, Providence Institute for Human Caring: Charting a course to a person-centered heath record
  • Vanessa Grubbs, Physician, University of California, San Francisco (UCSF): Integrating advance care planning into usual dialysis practice
  • Stephanie Harman, Physician, Stanford University School of Medicine: Harnessing machine learning to improve palliative care access
  • Debra Lotstein, Physician, Children’s Hospital Los Angeles/Keck School of Medicine, University of Southern California: Maximizing the use of home-based care for children with serious illness
  • Phillip Rodgers, Physician, University of Michigan: Palliative care in alternative payment models
  • Tatiana Sadak, Nurse Practitioner, University of Washington: Web-based dementia palliative care assessment and resource hub
  • Margaret (Gretchen) Schwarze, Physician, University of Wisconsin: National dissemination of a communication tool to increase access to palliative care for surgical patients
  • Jennifer Seaman, Nurse, University of Pittsburgh: Development and testing of a nurse-led intervention to ensure timely interdisciplinary family meetings in the ICU

To learn more about the individual scholars, please see the Sojourns Scholar page on the Cambia Health Foundation website.
Sojourns Scholar Leadership Program National Advisory Committee

  • Chair: Steve Pantilat, Director of Palliative Care Program, UCSF
  • Randy Curtis, Co-Director, University of Washington Palliative Care Center of Excellence
  • Patricia Davidson, Dean, the Johns Hopkins School of Nursing
  • Betty Ferrell, Director and Professor, City of Hope
  • Jean Kutner, Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine, Chief Medical Officer, University of Colorado Hospital

About Cambia Health Foundation

Based in Portland, Ore., Cambia Health Foundation is the corporate Foundation of Cambia Health Solutions, a total health solutions company dedicated to transforming the way people experience health care. Founded in 2007, Cambia Health Foundation awards grants in three program areas: Sojourns (Palliative Care workforce and leadership development, quality, access and awareness), Transforming Health Care and Children’s Behavioral Health. The Foundation has funded over $51 million in grants to advance patient- and family-centered care for all. Learn more at www.cambiahealthfoundation.org, and follow us on Twitter: @CambiaHealthFdn.

Highlights of the September 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
The Conversion Ratio From Intravenous Hydromorphone to Oral Opioids in Cancer Patients
Akhila Reddy, Marieberta Vidal, Saneese Stephen, Karen Baumgartner, Sara Dost, Ann Nguyen, Yvonne Heung, Simeon Kwan, Angelique Wong, Imelda Pangemanan, Ahsan Azhar, Supakarn Tayjasanant,
Edenmae Rodriguez, Jessica Waletich, Kyu-Hyoung Lim, Jimin Wu, Diane Liu, Janet Williams, Sriram Yennurajalingam, and Eduardo Bruera

Computerized Adaptive Testing in Pediatric Brain Tumor Clinics
Jin-Shei Lai, Jennifer L. Beaumont, Cindy J. Nowinski, David Cella, William F. Hartsell, John Han-Chih Chang, Peter E. Manley, and Stewart Goldman


Brief Quality Improvement Report
Increasing Advance Care Planning Completion at an Academic Internal Medicine Outpatient Clinic
Ngoc-Phuong Luu, Candace Nigrin, Kimberly Peairs, Sydney M. Dy, Melinda Sawyer, Samantha Pitts, and Brent Petty

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 Casarett, MD MA, Senior Associate Editor, JPSM

UNIPACs are Becoming Essential Practices in Hospice and Palliative Medicine

AAHPM’s top selling self-study series, UNIPAC, will be receiving a face lift in 2017. The UNIPAC is being rebranded and will be called Essential Practices in Hospice and Palliative Medicine, but will still be featured as the popular 9-volume set with newly updated content and practical cases.

The content of each book has also been reorganized into the following titles:

  1. Medical Care of People with Serious Illness
  2. Psychiatric, Psychological, and Spiritual Care
  3. Pain Assessment and Management
  4. Nonpain Symptom Management
  5. Communication and Teamwork
  6. Ethical and Legal Practice
  7. Pediatric Palliative Care and Hospice
  8. COPD, CHF, and Renal Disease
  9. HIV, Dementia, and Neurological Conditions

View our latest YouTube video on the new Essential Practices in Hospice and Palliative Medicine to gain further insight into the new edition.

Currently, all UNIPAC, 4th edition books are 50% off using promo code UNIPAC50 in the store. Get yours while supplies last! This deal lasts until June 30. After June 30, they will be gone for good.

Highlights of the June 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

Barriers to Medical Compassion as a Function of Experience and Specialization: Psychiatry, Pediatrics, Internal Medicine, Surgery and General Practice

Antonio T. Fernando III and Nathan S. Consedine


United States Clergy Religious Values and Relationships to End-of-Life Discussions and Care

Michael J. Balboni, Adam Sullivan, Andrea C. Enzinger, Patrick T. Smith, Christine Mitchell, John R. Peteet, James Tulsky, Tyler VanderWeele, and Tracy A. Balboni


Factors Driving Live Discharge from Hospice: Provider Perspectives

Rachel Dolin, Laura C. Hanson, Sarah Rosenblum, Sally Stearns, Mark Holmes, and Pam Silberman

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 Casarett, MD MA, Senior Associate Editor, JPSM

Highlights of the May 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

Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel

Rebecca L. Sudore, Hillary D. Lum, John J. You, Laura C. Hanson, Diane E. Meier, Steven Z. Pantilat, Daniel D. Matlock, Judith A. C. Rietjens, Ida J. Korfage, Christine S. Ritchie, Jean S. Kutner, Joan M. Teno, Judy Thomas, Ryan D. McMahan, and Daren K. Heyland

Tumor Talk and Child-Well-Being: Perceptions of “Good” and “Bad” News Among Parents of Children with Advanced Cancer

Angela M. Feraco, Veronica Dussel, Liliana Orellana, Tammy I. Kang, J. Russell Geyer, Abby R. Rosenberg, Chris Feudtner, and Joanne Wolfe

Decision-Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors

Sena Yamamoto, Harue Arao, Eiko Masutani, Miwa Aoki, Megumi Kishino, Tatsuya Morita, Yasuo Shima, Yoshiyuki Kizawa, Satoru Tsuneto, Maho Aoyama, and Mitsunori Miyashita

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 Casarett, MD MA, Senior Associate Editor, JPSM

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:

Original Articles

Measuring Advance Care Planning: Optimizing the Advance Care Planning Engagement Survey

Rebecca L. Sudore, Daren K. Heyland, Deborah E. Barnes, Michelle Howard, Konrad Fassbender, Carole A. Robinson, John Boscardin, and John J. You

Longitudinal Examination of Symptom Profiles Among Breast Cancer Survivors

Nancy E. Avis, Beverly Levine, Sarah A. Marshall, and Edward H. Ip

“Best Case/Worst Case”: Training surgeons to use a novel communication tool for high-risk acute surgical problems

Jacqueline M Kruser, Lauren J Taylor, Toby C Campbell, Amy Zelenski, Sara K Johnson, Michael J Nabozny, Nicole M Steffens, Jennifer L Tucholka, Kris L Kwekkeboom, and Margaret L Schwarze

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 Casarett, MD MA, Senior Associate Editor, JPSM