Archstone Foundation
Long Beach, California
Geographic focus: California
www.archstone.org

Improving End-of-Life Care for Older Adults

“Through growing leadership and shared community learning, the foundation’s projects are working toward improving the quality of palliative care for California’s older adult population.”

— Elyse Salend, Archstone Foundation


The Challenge
Archstone Foundation Program Officer Elyse Salend, MSW, explains that although palliative care has made great progress, the limited number of trained and skilled palliative care professionals, particularly nurses and social workers, is a barrier to further expansion. She says another key challenge is that chaplains often are not considered members of the palliative care team; consequently, patients’ spiritual needs go unaddressed. She also believes there is a need to document the quality of care and to identify metrics to measure the impact of palliative care, and notes that public policy related to palliative care needs to change as well.

Training Healthcare Professionals The foundation has awarded 18 grants to educate and train physicians, nurses, and social workers. Most of the funding supports a five-year investment in the End-Of-Life Nursing Education Consortium (ELNEC) training program for nurses. The program uses a train-the-trainer model and will track participants over five years to understand the impact of providing palliative care in hospitals and long-term care facilities. Palliative Care Expansion and Quality The foundation has supported developing, expanding, and improving the quality of palliative care in hospitals, initially by providing funding for five palliative care teams. Specific efforts include:

• Supporting the Palliative Care Leadership Center at the University of California, San Francisco, which is providing training and technical assistance to California hospitals seeking to develop and expand their palliative care services

• Supporting a three-year project in ten San Diego County long-term care facilities to demonstrate that training certified nursing assistants in fundamental palliative care skills helps avoid unnecessary transfers to hospitals as patients approach the end of their lives

• Contributing funds to help develop a national benchmarking tool

Promoting End-of-Life Spiritual Care The foundation supported a February 2009 national meeting of 40 thought leaders to address how to improve the quality of spiritual care as a part of palliative care.

Salend notes, “Archstone’s investments support leadership development as well as foster interdisciplinary learning communities.”

Training Healthcare Professionals The End-Of-Life Nursing Education Consortium (ELNEC) has directly trained 901 California-based critical care and geriatric care nurses in palliative care, and these nurses have collectively educated an additional 27,000 nurses at their work sites. The nurses ELNEC trained have developed a grief program in an emergency department; prompted adoption of a core palliative care curriculum in a new nursing graduate education program; and helped establish palliative care teams in seven of eight of one organization’s long-term-care facilities.

Palliative Care Expansion and Quality The foundation’s support led to five hospitals’ developing palliative care teams and/or establishing an inpatient unit, as well as to increasing palliative care referrals and consultations with palliative care teams. In a two-year period, the five hospitals served over 4,000 older adults. In addition, the hospitals improved clinical care, honored patients’ wishes more frequently, saved money, and improved their patient and family satisfaction scores. During this time, one hospital was able to leverage the Archstone Foundation’s support to obtain an additional $3.1 million to expand its program. Another hospital received a Circle of Life citation award from the American Hospital Association in July 2009.

In addition, the foundation’s palliative care pilot project at long-term care facilities in San Diego County has led to the development and testing of training modules for nursing directors and certified nursing assistants. The curriculum provides basic training in three palliative care clinical skills and teaches nurse supervisors effective methods to train and mentor certified nursing assistants.

Promoting End-of-Life Spiritual Care The convening of experts on spiritual care led to recommendations and activities to improve the quality of spiritual care at the end of life. The recommendations are published in the October 2009 issue of the Journal of Palliative Medicine.

Based on its experience to date, the Archstone Foundation suggests that other foundations might consider supporting the development and refinement of benchmarking tools; ongoing efforts to improve and standardize palliative care; and the development and expansion of evidence-based care and best practices for the field.

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“Given the diversity of people that receive services in the public hospital setting, we are focusing specifically on cultural humility as palliative care services are developed or expanded.”

— Kate O’Malley, California HealthCare Foundation


The Challenge
Promoting appropriate care toward the end of life is one of the California HealthCare Foundation’s (CHCF) ten program objectives. A 2008 CHCF survey of service quality at California hospitals noted that these hospitals increasingly recognize the need for palliative care in acute-care settings. The study found that about 43 percent of California hospitals now offer some form of palliative care, which represents a sharp increase over the past eight years.

Despite this increase, CHCF Program Officer Kate O’Malley says a lot of work remains to be done and “identifying the highest leverage opportunities is a challenge, especially with shrinking philanthropic dollars.”


The Foundation’s Approach
CHCF is supporting its goal of providing appropriate end-of-life care in three areas, the first focused on public hospitals, the second on dissemination of information about end-of-life issues, and the third on end-of-life care in nursing homes.

Public Hospitals In June 2008, the CHCF board approved a $2.5 million grant to spread palliative care in public hospitals. The three-and-one-half-year project incorporates planning, implementation, and expansion grants.

“For sustainability, we will look at the business case in the public hospital setting. We have an external evaluation to look at how well we achieve the objectives of the project,” says O’Malley.

Dissemination CHCF is also providing multi-year support for efforts to disseminate the Physician’s Orders for Life Sustaining Treatment (POLST) in California. The foundation is working on this effort with a state task force and 17 community coalitions.

Nursing Home Guidelines Once the guidelines are completed, the CHCF grantees will work with California’s survey agency to ensure that state surveyors are aware of these guidelines. In addition, the impact of the guidelines on reducing hospital transfers will be tested in 90 nursing homes.

O’Malley notes, “I am fortunate to work in a foundation with a specific objective around end-of-life care, so the road is already paved for this work. This means that great grantee partnerships can be developed and sustained over a longer period. Working with other foundations is also an important strategy.”

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Healthcare Foundation of New Jersey
Milburn, New Jersey
Geographic focus: Greater Newark and Metro West, New Jersey
www.hfnj.org

Supporting Children and Families

“Sustainability of palliative care programs is definitely an issue.”

• Circle of Life Children’s Center, Newark – Seed funding for a new organization that helps terminally ill children live life as fully as possible, for as long as possible, by providing comprehensive palliative care and end-of-life care

• Palliative Care Team, Newark Beth Israel Medical Center, Newark – Seed funding and support for the palliative care team to meet with families and set up a care plan within 48 hours of admission; educating families about their options; reducing unnecessary tests and procedures; and moving people out of the emergency room or ICU and into the palliative care unit

• Palliative Care Suite, Broadway House, Newark – Capital funding to establish a special suite, specialized care, and end-of-life treatment for those suffering with AIDS, and to provide support for their families

• Trinitas Regional Medical Center, Elizabeth – Funding for a pediatric palliative care program supporting children with HIV/AIDS

The Results
Executive Director Marsha Atkind notes that the programs funded by HFNJ face several challenges in providing palliative care, including:

• Overcoming the desire of some doctors and families to provide life-prolonging procedures that may, in fact, increase patients’ suffering rather than help them

• Overcoming some doctors’ resistance to “turn their patients over to palliative care” rather than control treatment themselves

• Overcoming the difficulty of coordinating care for patients who have numerous doctors and a variety of ailments

Atkind believes all of the palliative care programs the foundation has funded nonetheless have been extremely successful and represent replicable models. In particular, she points to the Circle of Life and the Newark Beth Israel programs. These, she believes, attend to families in a very timely and compassionate fashion; reduce unnecessary procedures; and move patients into palliative care sooner, thereby reducing hospital costs.

She acknowledges, however, that sustainability of palliative care programs will likely continue to be an issue without modification of reimbursement and billing procedures.

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Jewish Healthcare Foundation
Pittsburgh, PA
Geographic focus: Pittsburgh, PA
www.jhf.org

Prompting Discussion of End-of-Life Care

“This issue is very personal, and when you can engage people in looking at and listening to the patient experience, there is a chance to shift their views and thinking.”

— Nancy Zionts, Jewish Healthcare Foundation


The Challenge
The Jewish Healthcare Foundation (JHF) sees a variety of challenges in addressing end-of-life care needs: a lack of understanding of the impacts on patients and families; reimbursement and other policies that work against change; and physician behaviors it considers “entrenched.”

Nancy Zionts, Chief Program Officer at JHF, says grantmakers and their boards, healthcare administrators, and policymakers are also part of the general public, and their reluctance to address palliative care and end-of-life issues is much like that of the general public.


The Foundation’s Approach
JHF aims to address these challenges and promote change by shining a light on the issues and creating a palliative care social movement. Its current efforts focus on the following areas:

• Developing educational materials to help patients and their families understand and plan for the end of life. These materials address palliative care, hospice, advance planning, prognosis, and grief and bereavement resources

• Initiating or catalyzing community conversations about the end of life, focusing on systems surrounding the end-of-life experience

• Building community coalitions to “change the culture” around the end of life in a region where people typically don’t access the hospice and palliative care they need and are reluctant to discuss the end of life openly

• Advocating for better state and federal policies, and for systematic and financial support for quality end-of-life care by legal and medical professional organizations

As part of this effort, JHF has funded a series of discussions titled “Closure” to bring community leaders together to discuss different facets of the end of life. The six-month program draws on the expertise of leaders in medicine, nursing, law, and social services to address healthcare systems, religious, and cultural issues surrounding the end of life. The program culminates in a call to action, in which participants are asked to commit to concrete actions to improve the end-of-life experience in the region.

The Results
Zionts says, “The window of opportunity to discuss end of life publicly is opening—not wide yet, but opening. The time seems right to gear up with willing partners to set the stage for a successful social movement. To be successful we need to engage consumers at all levels and think broadly. This is a public health imperative that will impact everyone and that crosses clinical lines.” She notes that JHF’s success in palliative care grantmaking results from its commitment to and long-term presence in the field, supported by the foundation’s board. She says, “Where there was no one to move the agenda forward, we did it ourselves!”

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“We value collaboration and believe that we, as a smaller foundation, can leverage our willingness to take risks with visionary thinkers, and help build leadership that will produce much larger support and results.”

— Bobye List, The Emily Davie and Joseph S. Kornfeld Foundation

These dilemmas were all too familiar to the woman the Kornfeld Foundation honors. Emily Davie Kornfeld’s personal philanthropy was inspired by her own experience with chronic illness. During her lifetime, Mrs. Kornfeld supported medical research in pain control and treatment, as well as efforts to enhance individual choice in medical treatment and dying. Over the past 20 years, the foundation that bears her name has developed a medical grants program focused on three areas: amyotrophic lateral sclerosis (ALS), palliative care, and bioethics.

The Foundation’s Approach
In 2005, Kornfeld made a grant of more than $3 million to Mount Sinai School of Medicine to establish the National Palliative Care Research Center (NPCRC). The center’s goal is to establish an evidence base for best practices in palliative care and to build a cadre of scholars. These scholars can then apply for larger, multi-year NIH grants to support major research that can help create, define, and have a positive impact on the field of palliative care.

NPCRC supports both pilot investigatory projects and junior faculty awards. It operates as a national research center without walls, providing grants to investigators around the nation and around the world. NPCRC research focuses on three areas: exploring the relationship of pain and other distressing symptoms with quality and quantity of life; improving communication among adults with serious illness, their families, and their health care providers; and evaluating current models and systems of care.

Referring to the importance of research, List says, “There is very impressive data for cost-savings with palliative care, and this information needs to be treated more seriously and used as a rationale for not just discussing but actually implementing active and widely recognized palliative care practices at hospitals.”

In addition to funding NPCRC, the Kornfeld Foundation has made grants to support the dissemination of information needed to establish palliative care more fully as a field, and to help coalesce funding for palliative care.

Working with the American Cancer Society NPCRC has directed over $5 million toward supporting 38 palliative care research projects since starting this initiative three years ago. Most significantly, three of the grantees have been awarded NIH grants. List says, “NPCRC has been more successful, more quickly than we imagined, and that is greatly due to the strong collaborative philosophy. The role of the Kornfeld Foundation has been to be very diligent in determining the funding plan and staying very involved in supporting the implementation and continuation of NPCRC.”

She concludes, “It is our hope that over the next ten years the practice of palliative care will be fully integrated into the healthcare system, such that patients and their families at their own homes, hospitals, nursing homes, and community health centers can have access to much-needed comprehensive care.”

List believes that working alone any funder can have an impact on a specific area of service, but that if palliative care is to become an essential part of medical teaching and practice in this country—and if it is to be an expected part of care—funders need to work together.

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The Regence Foundation
Portland, Oregon
Geographic focus: Idaho, Oregon, Washington, and Utah
www.regencefoundation.org

Starting Hospital-Based Palliative Care Grantmaking

“There has been a tension between wanting to be innovative and at the same time making grants that will likely lead to immediate results.”

— Michelle McClellan, Regence Foundation

The Foundation’s Approach
The Regence Foundation first needed to establish a focused palliative care grantmaking strategy and have it approved by its staff and board. This proved challenging because the needs and opportunities in end-of-life and palliative care are enormous and diverse, and everyone brought his or her own experiences, expectations, and values to the discussion.

The foundation recognized that it had an opportunity to build on the model of Palliative Care Leadership Centers (that were established around the country by the Center to Advance Palliative Care and the Robert Wood Johnson Foundation) by taking advantage of what these centers learned about creating and maintaining high-quality palliative care programs.

The Regence Foundation decided to focus initially on hospitals—where the sickest patients seek treatment and the majority of Americans die regardless of their age or diagnosis—to achieve the greatest impact.

The Results
The Regence Foundation began accepting proposals in July 2009 under its Sojourns Pathway program, which focuses on advancing and expanding high-quality end-of-life and palliative care that meets the needs of patients and families across the care continuum. Grants are intended to support planning, implementation, and innovation in hospital-based palliative care. Using data from the Center to Advance Palliative Care’s (CAPC) hospital-based palliative care “scorecard,” the foundation determined it would offer the three types of grants, because hospitals in the region are in different stages of developing palliative care programs.

The foundation plans to bring together teams from the hospitals that receive planning grants and program leaders who can provide training and mentoring. Hospitals also can apply for seed funding to implement palliative care programs, and those with existing programs can apply for funding to establish or deepen partnerships with hospice, community, and social service organizations to extend the reach of palliative care into local communities.

McClellan notes that hospital-based palliative care is likely to continue to face such challenges as workforce shortages and hospitals’ ability to commit ongoing support when there are competing demands. She also advises other foundations new to palliative care grantmaking, ”Palliative care is not well understood, so it’s critical to be consistent in your communications with key audiences to ensure that misunderstandings are corrected and everyone is moving toward the same vision.”

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The Fan Fox and Leslie R. Samuels Foundation
New York, NY
Geographic focus: New York City
www.samuels.org

Supporting Cost-Effective, High-Quality Palliative Care

“Funding palliative care makes sense on so many levels. The people doing this work are extraordinary and are changing the culture in healthcare while being focused on what will make the patient and families most comfortable.”

— Julio Urbina, The Fan Fox and Leslie R. Samuels Foundation

The Foundation’s Approach
To meet its objectives, the Samuels Foundation has supported projects in three primary areas: palliative care consultation services, community and nursing home–based palliative care, and palliative care in emergency departments. Each year, the foundation typically funds five to seven projects that receive a total of $1 million in support. The foundation’s palliative care grants generally average $200,000 and are distributed over a two-year period. The majority of the grants are for hospital-based palliative care programs.

The Samuels Foundation has supported work that uses the model created by the Center to Advance Palliative Care to develop and implement palliative care consultation services. In July 2009, foundation staff recommended expansion of a consultation service funded two years earlier. This expansion will create a palliative care fellowship position to help meet the growing demand for palliative care and make it possible for the grant recipient to respond to this demand while training a cohort of providers.

The foundation began funding palliative care in emergency departments more recently, believing that avoiding admission to an intensive care unit will enhance the quality of life for patients and their families. The foundation feels this can decrease expenses for each admission—although it can also decrease revenues, to a lesser degree—and help patients avoid unneeded procedures and tests. To further support this effort, in July 2009 foundation staff recommended funding the expansion of a palliative care team to provide better service to a public hospital’s emergency department. The staff also recommended funding another palliative care team expansion project for a public hospital that would increase case management and add a spiritual component.

The Results
Program Director Julio Urbina and Program Officer Lauren Weisenfeld believe their palliative care grants as a whole have been the most successful area of grantmaking for the Samuels Foundation. Weisenfeld explains, “They enhance the quality of care, reduce costs, and have shown enough cost savings for organizations to sustain them.” She emphasizes that the tools provided by CAPC have been invaluable to the foundation’s grant recipients.

Urbina and Weisenfeld note, however, that administrators can be reluctant to continue expanding palliative care after a foundation provides seed funding. They have observed that organizations will maintain the palliative care team made possible through the foundation’s grantmaking but rarely fund additional full-time employees—even when the need is evident and more cost savings can be realized. They also note that expanding palliative care programs in nursing homes continues to be difficult because the facilities often lack a financial incentive and sophisticated understanding of the role palliative care can play in this environment.

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Raising Awareness of Palliative Care

“We've felt overall that we've gotten a good bang for our limited grantmaking bucks with both our end-of-life and palliative care grants.”

— Marcia Slater Johnston, Harry G. and Charlotte H. Slater Family Fund

The Foundation’s Approach
The Slater Family Fund made grants in response to the two proposals it received to raise awareness of palliative care. The first palliative care grant supported an end-of-life lecture at the Marquette University College of Nursing. Physicians who are members of the Marquette Medical School faculty and other health professionals were invited to attend.

The second palliative care grant supported a public forum at the Milwaukee Jewish Home and Care Center (JHCC) on end-of-life care. The grant provided funds to bring an expert in end-of-life care to Milwaukee for a presentation that had two objectives: to provide information about end-of-life care and to recruit volunteers to assist terminally ill residents as a part of the Caring Partners program. A workshop for JHCC staff on end-of-life care was held the next day.

With funds from the grant, the JHCC also was able to send invitations to the program to hundreds of individuals in nearby neighborhoods.


The Results
Slater Johnston explains that the efforts the grants supported were effective in increasing awareness of palliative care. Although those invited to the lecture were not direct providers of end-of-life care, the Marquette Medical School faculty members and physicians, as well as other health professionals, could see that palliative care has stature at an academic institution—and that a foundation finds it worthy of support.

The JHCC public forum attracted 31 attendees, and several of them expressed interest in becoming Caring Partners volunteers. By promoting the forum, the JHCC also obtained coverage of its end-of-life care program in a widely-read publication for the Jewish community.

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Enhancing Social Work Services

“We need to broaden the sector’s understanding of best practices, with regard to establishing appropriate pathways to integrate these services into a comprehensive health and social service care plan for homebound and frail clients.”

— Stephanie Raneri, The Isaac H. Tuttle Fund

The Challenge
The Tuttle Fund seeks to enable older persons to continue living in their own homes as long as they are physically and mentally able to do so. Stephanie Raneri, Executive Director of the Tuttle Fund, explains that it became involved in several palliative care grants because of its desire to promote the integration of social work as a core component of in-home medical and nurse practitioner care for the elderly patients.

The Tuttle Fund also supported the Doula to Accompany and Comfort program, a nonsectarian program of New York’s Jewish Board of Family and Children's Services that provides volunteers and professional social workers to clients nearing the end of life with only limited support from family and friends. A doula works with one person at a time to minimize the person’s sense of isolation, provide emotional comfort, assist with practical concerns, and advocate on behalf of the person with a life-limiting illness. The Tuttle Fund provided $75,000 to the program over three years, awarding grants in 2003, 2004, and 2005.

Raneri says that, through this grantmaking, the Tuttle Fund has learned that palliative care should be part of the services available to patients in a visiting doctors program, along with social work. She considers it essential that hospitals sustain support for social work services as part of a comprehensive care plan for homebound patients.

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