Philanthropy has provided critical funding for the advancement of palliative care in the United States, complementing support from health systems for clinical services and the federal government for research. To catalyze palliative care leadership development, the Cambia Health Foundation, located in Portland, Oregon, developed the Sojourns Scholar Leadership Program, which promotes the next generation of palliative care leaders by investing in their projects and professional development and providing peer and mentor support.
People are living longer than in previous generations. In the United States, there will be roughly 83.7 million people age sixty-five and older by 2050. Many people in this age group will live for years with serious illness. The goal of living well with serious illness will create greater demand and need for palliative care.
Palliative care is patient- and family-centered care focused on improving quality of life for people living with serious illness. It addresses physical, emotional, spiritual, and social needs of people while helping them to make treatment choices consistent with their values. In tandem with other clinicians, an interdisciplinary palliative care team—consisting of trained physicians, nurses, social workers, chaplains, and other specialists—works together to provide seriously ill patients and their families with an extra layer of support.
Over the past four decades, awareness of and access to palliative care have increased. According to the Center to Advance Palliative Care’s (CAPC’s) 2015 report card, almost 90 percent of large US hospitals with 300 beds or more offer palliative care services. Still, there is only one palliative care physician per 1,200 people with serious illness in the United States.
The future of the discipline—and the health care system’s capacity to care for our most vulnerable patients—therefore rests on our ability to build a strong palliative care workforce. The need for programs to train and develop the next generation of practitioners is more critical than ever. Importantly, to facilitate the field’s development and supply of trained clinicians, it is essential to identify, develop, and promote leaders in palliative care, who will serve as mentors in the development of other clinicians and who will become the future educators, researchers, and policy champions in the field. Weaving the discipline into the fabric of our evolving health care system and into the community will require leaders who can develop person- and family-oriented solutions, advance public policy, train generalist and specialist clinicians, and drive sustainable system change.
Beginning with the Robert Wood Johnson Foundation and the Project on Death in America (PDIA) in the 1990s, private–sector philanthropy has helped to define the practice of palliative care, develop its leaders, promote the need for it, and thus contribute to its advancement.
The Cambia Health Foundation’s Funding
Since 2009 the Cambia Health Foundation has invested more than $30 million to advance palliative care awareness, access, and quality. Mark B. Ganz, president and CEO of the foundation’s parent company, Cambia Health Solutions, was instrumental in launching the foundation’s original, signature Sojourns program, inspired by his personal commitment to palliative care and his vision of linking strategic philanthropy to the company’s broader cause of making health care more person-focused and affordable.
The foundation’s early investments included launching Sojourns to develop, plan, and implement hospital-based palliative care programs in the Pacific Northwest and to honor the contributions of established leaders, thus generating awareness of the field. In 2011, the foundation partnered with the National Journal to conduct a series of nationwide opinion polls about palliative care called “Living Well at the End of Life: A National Conversation.” Among other findings, the polls revealed that patients and families longed for conversation about their goals and values and wanted to learn more about palliative care. The polls also exposed gaps in workforce capacity and training.
After sharing the polling results with a wide audience, the foundation sought input from palliative care leaders—pioneers such as Susan Block, Betty Ferrell, Kathy Foley, Diane Meier, and Steve Pantilat—about how philanthropy might address workforce challenges and effect meaningful change. These advisers referred back to the PDIA Faculty Scholars Program, a model that had succeeded at developing a cohort of eighty-seven physicians and nurses who were scholars, academic leaders, role models, and mentors.
Sojourns Scholar Leadership Program
The Cambia Health Foundation considered whether a similar program could be used to train the next generation of palliative care leaders in a dynamic health care environment. Ultimately, the foundation decided to expand its Sojourns program by creating the Sojourns Scholar Leadership Program in 2014, to invest in and develop emerging national leaders to advance the field of palliative care.
Applicants to that program go through a competitive selection process, vetted by staff, its Advisory Board, and the Cambia Health Foundation Board of Directors. Selected scholars each receive a two-year, $180,000 grant to conduct an innovative and effective clinical, research, education, or policy project and to develop and implement a personal leadership development plan. In addition, an Advisory Board member mentors each scholar. (The program’s Advisory Board members are national physician and nurse leaders.)
The evolution of the program has been guided by humility. The foundation is a learning organization, committed to achieving the scholars’ goals. At an annual two-day summit, the scholars share their work, collaborate with peers and mentors, join in panel discussions, and receive training on diverse topics, including leadership and communication. Participants report that the peer-to-peer learning opportunities at the summit have been invaluable, as they work through challenges, brainstorm solutions, and mentor each other. The positive effects of this shared-learning experience have inspired the foundation to institute ways to foster deeper engagement with the scholars beyond the two-year initial grant—for example, inviting graduates to serve as mentors and to present at future summits and having graduates review applicants’ submissions to the program.
As of June 2017, the Sojourns Scholar Leadership Program has approved four cohorts, each consisting of ten leaders in the field, and a total of $7.2 million in grants. With support and mentorship from the Advisory Board and other palliative care leaders in the field, the scholars are doing ground-breaking work in many aspects of palliative care, and their projects also address a wide range of system issues and disparities in access to palliative care.
Challenges have included attracting a diverse applicant pool—particularly getting applicants from diverse parts of the country (the Midwest and South) and from settings other than academia (from health systems and community-based settings)—and increasing nurse leader representation among our scholars.
For Arif H. Kamal, a scholar from the inaugural cohort, the leadership program provided much-needed time, space, and a sense of community so he could focus on becoming a thought leader in palliative care. He is a board-certified palliative medicine physician and medical oncologist at Duke University. Kamal’s project focuses on quality measurements to improve care delivery to align with patients’ goals. Kamal said, “Sojourns Scholars was the first program to invest in me as a person and as a leader. It was the spark that lit my fire, and now it’s clear to me what my trajectory is.”
With the program’s support, Kamal has built an international quality improvement collaborative for the field. It has collected data on nearly 50,000 patient encounters in palliative care to identify gaps and improve care. This work has led to a five-year award from the Agency for Healthcare Research and Quality to continue his work. “Leadership requires knowing where to put your efforts and apply your skills, given the opportunity costs, while also understanding how to delegate and craft a compelling message,” reflected Kamal. “The Sojourns [leadership program] is exactly what we need in the field” because “it acknowledges that anyone can become a leader with practice, coaching, and community and peer support.”
As a nurse practitioner and health services researcher, Lynn Reinke wanted to study the effect of alleviating symptoms of serious illness through palliative care among patients with three or more chronic, serious illnesses, with the goal of better aligning staff resources to help this population. At the time she joined the Sojourns leadership program, her roles included being an investigator at the VA Puget Sound Health Care System and a clinical associate professor at the University of Washington’s School of Nursing. Despite holding these important positions, Reinke had never had any formal leadership training, so the program particularly appealed to her.
Reinke credits mentorship from Diane Meier with influencing her career path and her life. “She pushed me to expand my leadership and policy perspective, asking me to continuously question how my research would make a difference.” With Meier’s encouragement, Reinke applied for and was awarded a Health and Aging Policy Fellowship—funded by the Atlantic Philanthropies and The John A. Hartford Foundation (JAHF) and based in Washington, D.C.
To Reinke, the Sojourns Scholar Leadership Program is successful because of the caliber of the leaders mentoring the scholars and the intentional mix of physician and nurse participants whose collaboration is vital to the interdisciplinary approach that defines palliative care. Reinke said, “Because I’m a leader in the VA nursing organization, for example, I can use that platform to promote the [Sojourns Scholar Leadership] Program and the work that we’re doing collectively, citing expertise my peers have in a particular niche.” This opportunity has allowed Reinke, as well as her entire cohort in the program, to expand the breadth of their influence even further.
Looking ahead, the Cambia Health Foundation will continue to update the leadership program to meet changing needs, with the goal of seeding palliative care leaders—clinicians, educators, researchers, and policy makers—throughout the health care system and the community. This approach is intended to enable access to high-quality palliative care whenever and wherever patients and families want it.
Collaboration With Other Funders Drives Impact
An African proverb recommends, “If you want to go fast, go alone. If you want to go far, go together.” The Cambia Health Foundation believes that collaboration among funders is a powerful force for sustainable change. To better understand barriers to palliative care access and how to address them, the Cambia Health Foundation, the JAHF, and California Health Care Foundation collaborated in 2016 to poll 736 primary care and specialist physicians in fifty states to gauge their attitudes on, and frequency of engaging in, advance-care planning and end-of-life conversations. The majority (75 percent) of physicians who responded to the survey, “Conversation Stopper: What’s Preventing Physicians from Talking with Patients about End-of-Life and Advance Care Planning?” said they believed that they were responsible for initiating these conversations but were unsure how to manage the discussions.
These findings demonstrated the need for palliative care training for all clinicians who care for patients with serious illness.
A Growing Network
As the need for and awareness of palliative care surges, there is a growing network of funders investing in the field. Foundations play a key role in supporting critical areas such as leadership development, development of quality of care measures, and service innovation.
In the table below are just a few examples of foundations that are doing important work to advance palliative care. Of course, this is not meant to be a comprehensive list.
The collaborative and complementary efforts of an increasing number of foundations will drive important change in palliative care quality, access, workforce development, and leadership development. By sharing perspectives, prioritizing needs, and divvying up the work based on funders’ particular strengths and focus areas, funders can collectively impact system change and advance public policy to promote person- and family-centered care. Philanthropy can be a catalyst for bringing about more training in palliative care, more funding for such care, and more continuing medical education in palliative care. Philanthropy can also draw attention to palliative care and inform and educate people about its issues and the opportunities to improve it.
| Funder | Area of Focus |
|---|---|
| California Health Care Foundation | Many initiatives in palliative care have been supported by the California Health Care Foundation (CHCF). For example, in July 2012, it provided $750,000 in grant funds to help launch the Institute for Palliative Care at California State University (CSU) in San Marcos. The CSU system of twenty-three campuses has embraced the integration of palliative care into their health sciences curricula. |
| Gordon and Betty Moore Foundation | The Gordon and Betty Moore Foundation, a national funder located in San Francisco, is investing in strengthening the workforce to care for patients with one or more chronic conditions and functional limitations. It has provided support to create a “one-door” portal to educational programs to enhance the communication skills of practicing physicians and other clinicians so they can help patients understand their options and make decisions about the care they want to receive late in life. The Moore Foundation has also supported development and dissemination of evidence-based tools to train caregivers to perform some tasks that nurses typically perform. |
| Horizon Foundation | The Horizon Foundation, a local funder located in Columbia, Maryland, is working on end-of-life care planning—that is, expressing one’s wishes and having them followed by the health care system. |
| The John A. Hartford Foundation | The John A. Hartford Foundation (JAHF), another national funder, has been a long-time supporter of the field of palliative care through its grant-funded support of the Center to Advance Palliative Care, which focuses on improving access to high-quality palliative services and advance-care planning in the hospital and community. More recently, the JAHF has focused on funding an effort to more rapidly scale palliative care. That JAHF grant also provides core support for six of the nation’s leading innovative efforts, including National POLST (Physician Orders for Life-Sustaining Treatment] Paradigm, and The Conversation Project. |
| Stupski Foundation | The Stupski Foundation is taking a multifaceted approach to transform end-of-life care in the San Francisco Bay Area and Hawaii. It is currently testing multiple hypotheses about which combination of interventions will be most effective in improving care for people with serious illness and their families. |
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