The NCHPC Structure, Key Activities and Ongoing Projects

Coalition Blog – #2Welcome to the second Coalition Blog Post! For a brief description of the Coalition, please see our previous blog.

Our nine Coalition Member Organizations and staff work collaboratively on a number of Coalition activities that can be categorized into two large “buckets” of work:
  • Standard Coalition Activities (i.e., advancing the fields of hospice and palliative care through collaboration in the areas of advocacy, communication, and quality); and
  • Overseeing the revisions to the National Consensus Project (NCP) Clinical Guidelines for Quality Palliative Care.
The Coalition Executive Committee oversees both these efforts. This blog post will focus on standard Coalition operations and activities; our next blog will discuss the NCP in more detail.

Coalition Structure
As part of its regular activities, the Full Coalition (with representatives from all nine organizations) meets monthly to discuss new opportunities, work through issues, and provide updates on ongoing initiatives. Most often, it will be the Full Coalition that makes decisions; however, sometimes decision making will fall to the Coalition Executive Committee which also meets monthly. Separate, smaller Coalition workgroups meet regularly to discuss topics in greater detail and will either take the lead or present recommendations to the full Coalition on significant opportunities:

Advocacy Workgroup:
This Workgroup discusses and identifies legislative and regulatory opportunities and threats to the hospice and palliative care field and develops recommended positions for the coalition to consider. It also strategizes on potential outreach to new external partners and Coalition activity with Federal policymakers.
Communications Workgroup: Our newest Workgroup utilizes the communications staff expertise within the Coalition Membership to share work plans, develop messaging, and respond to media inquiries or opportunities.

Quality Workgroup:
This Workgroup reviews opportunities to improve quality measures related to palliative care. This includes facilitating the nominations of subject matter experts to serve on Technical Expert Panels (TEPs), key committees from the National Quality Forum (NQF), and various opportunities from the National Academy of Sciences or other influential panels. This group also works together to comment on quality reports and measure specifications from the Centers for Medicare and Medicaid Services (CMS), identify funding opportunities for quality measure development and disseminating information to developers within the field.

Key Accomplishments
  • Coalition response to CMS Request for Information on potential new Medicare Guiding Principles and Models
  • Coalition worked with eleven other national organizations to communicate key concerns to the new Administration focused on improving care for those with serious illness and their families
  • Secured key meeting with the Senate Finance Committee, Chronic Care Working Group to make recommendations regarding proposed policy options. The Coalition was one of the organizations selected and invited to meet with committee staffers in person. This invitation was based on the strength of the diversity of the Coalition which was able to bring representatives from the full interdisciplinary team to Washington DC to meet with policy makers.
Quality and Standards
Communication and Outreach
This is the second in the Coalition bi-monthly blog series. Please submit your comments or questions below or to If there is a topic you would like to see in a future blog, please let us know.

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:

Original Articles

End-of-Life Experience of Older Adults Dying of End-Stage Renal Disease: A Comparison With Cancer

Melissa W. Wachterman, Stuart, R. Lipsitz, Karl A. Lorenz, Edward R. Marcantonio, Zhonghe Li, and Nancy L. Keating

Effect of Prophylactic Fentanyl Buccal Tablet on Episodic Exertional Dyspnea: A Pilot Double-Blind Randomized Controlled Trial

David Hui, Kelly Kilgore, Susan Frisbee-Hume, Minjeong Park, Diane Liu, Diwakar D. Balachandran, and Eduardo Bruera

A Survey to Evaluate Facilitators and Barriers to Quality Measurement and Improvement: Adapting Tools for Implementation Research in Palliative Care Programs

Sydney M. Dy, Nebras Abu Al Hamayel, Susan M. Hannum, Ritu Sharma, Sarina R. Isenberg, Kamini Kuchinad, Junya Zhu, Katherine Smith, Karl A. Lorenz, Arif H. Kamal, Anne M. Walling, and Sallie J. Weaver

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

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

Hospice and Palliative Medicine Visionaries: How They Inspire Others

Physicians, nurses, and researchers were voted the top 30 Visionaries in Hospice and Palliative Medicine, as the American Academy of Hospice and Palliative Medicine (AAHPM) celebrates its 30th anniversary.

To commemorate its anniversary, the Academy asked members to nominate individuals they considered to be the most influential leaders in hospice and palliative medicine, and then select their top 10 among the 142 nominees. In the end, more than 6,500 votes were cast. The final 30 were determined by a panel of past Visionaries which reviewed the top vote-getters. These individuals join an elite group of 30 additional visionaries who were recognized in 2012; new visionaries are identified once every five years.

Many common themes emerged in praise of the nominees – mentor, leader, big thinker – but there was also great variety in how Academy members described what these Visionaries did or do to advance the profession, citing them for their innovation, meaningful contributions, extraordinary vision and inspirational leadership. Some Visionaries were identified as individuals who significantly increased access to care within a region or community, while others shaped policy and practice on a national or international level.

So, here, in alphabetical order, are 30 hospice and palliative medicine Visionaries. I have included some of the comments that were submitted anonymously in support of each Visionary to give you a better idea of their contributions to the field.

Anthony L. Back, MD, Professor, Fred Hutchinson Cancer Research Center and Co-Director, Center for Excellence in Palliative Care, University of Washington, WA

“He has pioneered palliative care communication training with simulation and feedback. His academic work, use of social media for education and culture change, and personal mentorship have impacted many of us in the field and beyond.”

J. Andrew Billings, MD, Harvard Medical School Center for Palliative Care, MA *

“A leader in palliative care education.”

David J. Casarett, MD MA FAAHPM, Chief of Palliative Care Services, Duke University Health System, NC

“He has published many research article and books on a wide range of important topics; is sought out as a speaker for national and international meetings, TED talks and national media, such as NPR.”

Eric J. Cassell, MD MACP, Emeritus Professor of Public Health, Weill Medical College of Cornell University, NY

“A wonderful guide in the nature of suffering.”

James F. Cleary, MD MBBS FAChPM, Associate Professor of Medicine, Medical Oncology Section and Director of Palliative Medicine, University of Wisconsin Hospital and Clinics; Academic Medical Director, Agrace Hospice, WI

“He has passionately advocated internationally for the right for relief of pain. He has created programs, mentored clinicians in multiple disciplines and volunteered countless hours to organizations to advance the cause of palliative care globally.”

J. Randall Curtis, MD MPH, Director, Cambia Palliative Care Center of Excellence and Professor of Medicine, University of Washington, WA

“He is a tenacious, supportive, and effective mentor to many successful faculty and has been on the forefront of integrating palliative care within critical care, pulmonology and mainstream medicine.”

Constance Dahlin, MSN ANP-BC ACHPN FPCN FAAN, Director of Professional Practice, Hospice and Palliative Nurses Association, PA

“She has led the field of palliative care for more than two decades – serving on many national boards, establishing policy, writing textbooks, teaching and serving as a steady mentor in each of these areas.”

Frank D. Ferris, MD FAAHPM, Executive Director, Palliative Medicine Research and Education, OhioHealth, OH

“His work has created systemic change in hospice and palliative medicine (HPM) policy, drug availability, HPM education, and access to HPM services in many places around the world. He is a kind and thoughtful leader and human being.”

Perry G. Fine, MD, Strategic Advisor, Capital Caring, Washington D.C.

“He is the “pain guru” of our time – a dedicated anesthesiologist whose vision for a coordinated and comprehensive system of care drives his passion for developing person-centered and economically sound innovations to simply improve care for those facing end-of-life challenges.”

Sarah E. Friebert, MD FAAP FAAHPM, Director, Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital, OH

“She developed the gold standard pediatric palliative care program in the country, and advanced the practice of pediatric palliative care through long standing advocacy on a national level with many organizations.”

Nahla Gafer, MD, Clinical Oncologist, Radiation and Isotopes Centre Khartoum (RICK), Sudan

“She is the founder of palliative care in Sudan and established the first palliative care unit and is one of few researchers in palliative care in the country.”

James L. Hallenbeck, MD, Associate Professor of Medicine, Palo Alto Veterans Affairs Health Care System, CA

“He is one of the early visionaries of palliative care in the VA system, both in medical education and in program administration. As he has with so many of my generation, he inspired me to choose palliative care as a specialty.”

Arif H. Kamal, MD MBA MHS FAAHPM, Associate Professor of Medicine and Business Administration, Duke University, NC

“He has been a trailblazer in quality measurement and improvement in palliative care and his visionary approach has led to numerous recognitions, including an appointment to the National Quality Forum.”

Jean S. Kutner, MD MPH/MSPH FACP FAAHPM, Professor of Medicine, Division of Internal Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine; Chief Medical Officer, University of Colorado Hospital, CO

“She is a founding co-director of the Palliative Care Research Cooperative and served on the Institute of Medicine Committee which recently published Dying in America.”

Joanne Lynn, MD MA, Director, Altarum’s Center for Elder Care and Advanced Illness, Washington D.C.

“She was an early leader in the hospice field and developer of the ‘surprise question.’ She has spent her life and career in service to improving care for people in the waning days of life.”

Mary Lynn McPherson, PharmD MA BCPS CPE, Professor and Executive Director, Advanced Post-Graduate Education in Palliative Care, Department of Pharmacy Practice and Science, University of Maryland School of Pharmacy, MD

“She is a passionate, prolific and talented palliative care educator and has tirelessly championed the importance of appropriate medication therapy in patients with serious illness.”

Michael J. Nisco, MD MBA HMDC, Vitas Medical Director, San Francisco Bay Area, CA

“He has been a true pioneer in the development of palliative care programs and training hospice physicians, and has been a mentor to countless aspiring palliative care physicians internationally.”

Judith A. Paice, PhD RN FAAN, Director, Cancer Pain Program, Division of Hematology-Oncology and Research Professor of Medicine, Northwestern University, IL

“She is recognized and respected for her more than 35 years of improving the pain and suffering of patients and a leader in developing national clinical guidelines for pain and palliative care, especially in oncology.”

Christina M. Puchalski, MD MS FACP FAAHPM, Director, George Washington Institute for Spirituality and Health; Professor of Medicine and Health Science, George Washington University, Washington D.C.

“She is a pioneer in spiritual care as a key aspect of palliative care and has had a major impact on medical education and national and international advances in spiritual care.”

Tammie E. Quest, MD FAAHPM, Director, Palliative Care Center for Woodruff Health Sciences Center and Associate Professor, Department of Emergency Medicine, Division of Geriatrics and Gerontology, Emory University School of Medicine, GA

“She is a leader in promoting the role of palliative care in the ER.”

M.R. Rajagopal, MD, Director, Trivandrum Institute of Palliative Science and Founder and Chairman, Pallium India, India

“He is the father of palliative care in India.”

Christine S. Ritchie, MD MPH FAAHPM, Harris Fishbon Distinguished Professor in Clinical Translational Research and Aging, Division of Geriatrics, Department of Medicine,  University of California-San Francisco, CA

“She is an amazing and gifted leader who has been instrumental in charting a new course for palliative care nationally. She understands the strategic place of palliative care in population health, community settings, and among patients with multiple morbidities and chronic illness.”

Scott T. Shreve, DO, Director, Hospice and Palliative Care, Department of Veterans Affairs, PA

“He has systematically fostered the development of palliative care programs at all VA facilities paired with metrics that allow continued quality improvement.”

Christian T. Sinclair, MD FAAHPM, Assistant Professor, Palliative Medicine Division, Internal Medicine Department, University of Kansas Medical Center; Editor, Pallimed, KS

“He has led a generation of palliative clinicians into the field with his enthusiasm, inclusiveness and support. I, and many others, would not be as involved in the field without his influence.”

Thomas J. Smith, MD FACP FASCO FAAHPM, Professor of Palliative Medicine and Professor of Oncology, Johns Hopkins Medicine, MD

“He is instrumental in advancing collaboration between oncology and palliative medicine through writing, research, leadership and clinical excellence.”

Jennifer S. Temel, MD, Associate Professor of Medicine, Harvard Medical School; Clinical Director, Thoracic Oncology, Massachusetts General Hospital, MA

“She is an internationally recognized leader regarding the integration of palliative care in oncology.”

Joan M. Teno, MD MS, Professor, Division of Gerontology and Geriatric Medicine, University of Washington, WA

“She is a sought-after mentor and consultant and widely recognized as a giant of research in our field.”

James A. Tulsky, MD FACP FAAHPM, Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute; Professor of Medicine, Harvard Medical School, MA

“He has advanced our understanding of communication, illness experiences, and doctor-patient relationships for more than two decades and at every opportunity in his career, he has mentored and inspired the next generation of scholars and clinicians.”

Eric Widera, MD FAAHPM, Professor, Division of Geriatrics, University of California-San Francisco; co-founder, GeriPal and ePrognosis, CA

“He is an inspiring teacher, mentor and leader, who, through his innovative work in education and social media has increased awareness of palliative care.”

Joanne Wolfe, MD MPH FAAHPM, Chief, Division of Pediatric Palliative Care, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute; Director, Pediatric Palliative Care, Boston Children’s Hospital; Associate Professor of Pediatrics, Harvard Medical School, MA

“She has been the voice for children with serious illness and their families. She is a great visionary in developing, implementing, teaching and mentoring.”


On behalf of the AAHPM staff, we extend our congratulations to all of the nominees and thank them for their continued commitment to improving the care of seriously ill patients and their families.

Steve Smith, MS CAE, AAHPM Executive Director and CEO

Highlights of the November 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

Gaps in Provision of Primary and Specialty Palliative Care in the Acute Care Setting by Race and Ethnicity
Elizabeth Chuang, Aluko A. Hope, Katherine Allyn, Elissa Szalkiewicz, Brittany Gary, and Michelle N. Gong

Supply-Side Differences Only Modestly Associated with Inpatient Hospitalizations Among Medicare Beneficiaries in the Last Six Months of Life
Elizabeth L. Crouch, Janice C. Probst, Kevin J. Bennett, and James W. Hardin

To Intubate of Not to Intubate: Emergency Medicine Physicians’ Perspective on Intubating Critically Ill, Terminal Cancer Patients
Kenneth Kim, Bharath Charkravarthy, Craig Anderson, and Slomon Liao

A Randomized Clinical Trial of Caregiver-Delivered Reflexology for Symptom Management During Breast Cancer Treatment
Gwen Wyatt, Alla Sikorskii, Irena Tesnjak, Dawn Frambles, Amanda Holstrom, Zhehui Luo, David Victorson, and Deimante Tamkus

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

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

Opioid Prescribing: Safe Practice

We currently face an unprecedented crisis involving opioids, as anyone paying attention to media reports knows. More people are dying of overdoses than die from vehicular crashes or from gun violence. Many of these overdose deaths, and most of the recently noted increases, involve opioids.

The reasons for the recent increase are multifactorial. One cause is the recent availability of low-cost, high-potency street opioids such as heroin and fentanyl. Another is an attitudinal shift, with many believing that prescription medications are, by their nature, safer than illicitly manufactured drugs.

There has also been a change in many prescribers’ practices in response to education regarding another crisis – the one of under-managed pain. Opioids continue to be the mainstay for the management of many types of pain, including severe acute pain, post-surgical pain, cancer-related pain, and pain associated with terminal conditions. However, as prescribers gain proficiency and become accustomed to utilizing opioids for these problems, many become relatively desensitized to the drawbacks associated with this class of medications.

Opioids are not first-line agents for the management of chronic, non-malignant pain. They have not been proven to be effective for such pain, though admittedly, very little in terms of alternatives has such proof either. Individuals have significant differences in sensitivity to various opioids, based on genomic variances in opioid receptors. Similarly, we have become increasingly aware that some individuals are biologically predisposed to the development of use disorders and addiction, with longer exposure to and higher doses of opioids raising such risk.

Policy-makers, after receiving input from multiple experts, developed a formal multi-pronged plan to address some of these issues presented by the opioid crisis. A balanced approach is the goal, emphasizing both the utility of opioids for severe pain and the risks of opioids when used improperly. One part of this balanced response was the development by the Food and Drug Administration (FDA) of an Opioid Risk Evaluation and Mitigation Strategies (REMS) plan. Originally covering only extended release and long-acting (ER/LA) opioids, it is being expanded to cover all opioid formulations. The REMS made available funds to create education for prescribers and the public, on the safe and balanced role of opioids in modern medical practice.

The American Academy of Hospice & Palliative Medicine (AAHPM) joined with a number of other professional societies to form the Collaborative for REMS Education. CO*RE represents a wide array of professionals, including primary care physicians, nurse practitioners and physician assistants, addiction specialists, oncologists, pain management specialists, as well as hospice & palliative medicine (HPM) physicians. The group has developed education addressing safe and effective opioid prescribing, appropriate use of opioid antagonists, opioid safe storage and disposal, abuse-deterrent formulations, addiction and use disorder screening, and prescribing in special populations. To date, CO*RE has provided more Opioids REMS education across the nation than any other group.

Now in its sixth edition, the CO*RE curriculum is called Opioid Prescribing: Safe Practice, and reinforces what all prescribers should understand about opioids in today’s regulatory and political climate. In September 2017, Dr. Ronald Crossno and Dr. Daniel Fischberg presented this information in a 2-hour webinar, providing an HPM slant to the material. This webinar was recorded and is now offered as a CME-accredited, REMS-compliant training on the AAHPM online store. This is provided free of charge, as required by the Opioid REMS blueprint. Participating in the webinar and finishing the associated post-test results in the clinician being designated a “Completer”, meaning the Completer can show proof of having taken the course, if such education is ever mandated.

Whether you are new to the field or an old pro at opioid prescribing, we encourage you to take the Opioids Prescribing: Safe Practice course and to complete the associated post-test. Virtually everyone who has taken it has admitted to learning something new, which they can incorporate into practice.

Submitted and written by Ronald J. Crossno, MD HMDC FAAHPM and Daniel Fischberg, MD PhD FAAHPM

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

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, 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: and

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, and follow us on Twitter: @CambiaHealthFdn.