Palliative care for the poor and disenfranchised: a view from the Robert Wood Johnson Foundation

Palliative care is likely to become the norm of practice in the mainstream of US healthcare in the coming decade. Healthcare providers are taking the lessons of hospice care and incorporating them in other settings, especially hospitals and nursing homes, where the majority of Americans spend their last days of life. According to unpublished survey findings hundreds of US hospitals have palliative care programmes and many others are planning to establish one. Although these numbers represent a small percentage of the more than 5000 hospitals in the USA, anecdotal evidence suggests that this growth is a very recent phenomenon and is continuing at a rapid rate.

BARRIERS TO ACCESS

While palliative care is likely to become mainstream practice, it will be slow to reach certain patients and families who could benefit from it. One barrier is the strong bias of the healthcare system towards curative medicine, with financial incentives that encourage provision of aggressive treatment. Rural and urban areas with a generally poor healthcare infrastructure will tend to fare worst in relation to palliative care. But even if palliative care were universally available in the healthcare system, not all Americans could access it. Forty-two million Americans lack health insurance coverage, and absence of health insurance is correlated with lack of access to medical care generally and poor health outcomes. Racial and ethnic minorities are more likely than others to lack insurance, but the fact that they receive fewer preventive services and technologically advanced services than the insured is not wholly explained by income or insurance status¹.

The Robert Wood Johnson Foundation is pursuing three strategies to improve access to care. The first is to increase the number of children and families who have health insurance coverage. Efforts are primarily focused on helping States and local communities to identify and enrol eligible children in public and private insurance programmes. A second strategy is to reduce the difficulty the uninsured and other vulnerable people have in obtaining care by helping to maintain the informal network of institutions and providers that serve as the ‘safety net’ for the poor and uninsured. The third strategy is to help those with health insurance to keep it. Workers between the ages of 45 and 65 are at the highest risk for events that could disrupt their connection to employment. Because health insurance and employment are inextricably linked for the population under age 65, loss of employment means loss of health insurance coverage. Employment can be disrupted for a host of reasons including chronic ill health, disability, involuntary job loss, widowhood, and caregiving responsibilities for an ageing relative.

While the barriers to access to general healthcare have been well documented, the access barriers to palliative care are only beginning to be explored. A growing body of research indicates that racial and ethnic minorities lack access to treatment for pain². One contributing factor is that pharmacies in neighbourhoods where the majority of the residents are non-white are less likely to carry opioids than pharmacies in predominantly white neighbourhoods³. Reasons for underutilization of hospice and palliative care by African Americans, even when they have access to this care, have yet to be explored in depth⁴. The barriers to healthcare that the poor and disenfranchised have traditionally encountered may affect their receptivity to palliative care. If patients perceive that they have been deprived of technologically advanced healthcare services in the course of their illness, they may be less receptive to palliative care—especially if it is viewed as a substitute for aggressive treatment. For widespread acceptance of palliative care, the separation from curative treatment must be abandoned. Indeed, a growing number of healthcare institutions are implementing models that combine aggressive treatment of disease and palliative care. In this way, palliative care will be considered part of high-quality medical care. In contrast, if palliative care is initiated only when the decision is made to stop aggressive treatment, it will become associated with the ‘terrible choice’ and society will gain a very narrow view of the benefit it can render. So, if we accept that palliative care is central to good medical care, what strategies can be identified to increase access for the poor and disenfranchised?

STRATEGIES TO INCREASE ACCESS

A key strategy is to build palliative care into the ‘genetic code’ of existing healthcare infrastructure including education and training programmes, hospitals, nursing homes, home care, and safety-net providers who offer care of the uninsured and underinsured. This strategy will not remove the barriers resulting from lack of insurance coverage or the disparities between under-served and well-served geographic areas. Additional approaches are needed. But making palliative care part of the existing system of care will be a major accomplishment in itself. A simultaneous effort is needed to engage voluntary community-based organizations, faith-based groups, and other entities that can not only stimulate the establishment of palliative care programmes in healthcare settings in their communities but can also provide support for dying people and their families.

Education and training of health professionals

The diffusion of palliative care in the healthcare system will depend critically on an adequate number of health professionals with the knowledge, attitude and skills to render such care. Education and training initiatives are needed and special emphasis must be given to engage health professionals from all walks of life. In the USA we are very short of minority health professionals who have been engaged in palliative care faculty development and other education and training programmes. Of the 780 physicians certified by the American Board of Hospice and Palliative Medicine, just 10 are African American. The Harlem North General Hospital Palliative Care Collaborative, which is providing education and training in palliative care for minority health professionals, is an important model worthy of replication.

Pilot projects to increase access to palliative care

Pilot projects can be a useful way to jump-start palliative care for the poor and disenfranchised. They can provide important lessons about illness, death and dying from different cultural perspectives. These lessons need to be incorporated in the design of palliative care programmes since they are a key factor in ensuring community involvement and ownership and, hence, sustainability (see, for example, [www.promotingexcellence.org]).

Among the projects the Robert Wood Johnson Foundation has supported is the palliative care programme at Cooper Green Hospital in Birmingham, Alabama. Called the Balm of Gilead, the programme grew out of the recognition by the community of important unmet needs among its uninsured and underinsured patients. Many of the poor were dying alone in their homes in substandard conditions. Local church groups and volunteers provide care and support to patients and their families. The success of the Balm of Gilead demonstrates the value and importance of engaging the community in identifying what people need. It also demonstrates the importance of effective community partnerships, among healthcare and voluntary organizations, that maximize the use of limited resources.

Other RWJF-funded pilot programmes to bring palliative care to the poor and disenfranchised offer similar lessons. Louisiana State University's PalCare programme for people with advanced HIV disease is demonstrating how to incorporate palliative care with aggressive HIV management for patients who are relatively young and burdened by disease. The PalCare team works closely with outpatient care providers, HIV inpatient care, hospice, and home care services to create continuity of care for the patient facing advanced HIV disease.

Initiatives that are bringing palliative care to isolated rural native Americans in Alaska and New Mexico, where the healthcare infrastructure is very limited or non-existent, illustrate the challenges as well as the opportunities. In Alaska, community health aides and trained volunteers are providing care and support that enable Alaska Natives to die at home rather than alone in hospitals hundreds of miles away. In New Mexico, a palliative care training centre is being established at the University of New Mexico, with a curriculum that addresses Native American, Hispanic and Anglo rural culture as well as local customs.

The role of charitable foundations in increasing access

Foundations are uniquely suited to support new ideas and best practices that serve the common good. They can elevate good ideas to the point where they are well integrated in society and become the social norm rather than the exception. Palliative care is one of those ideas whose time has come. Public awareness has increased, and leaders in medicine and nursing increasingly recognize that palliative care has been a missing piece of the healthcare system. Foundations can help foster such awareness among the public and health professionals. They also can support the emerging leaders who are establishing capacity in the healthcare system to make palliative care available to patients and families. There are few times when foundations can act in a way that benefits all people. Palliative care is one such opportunity—because all of us will die.

If palliative care is to become part of the genetic code of the healthcare system, an essential first move is to integrate it into medical and nursing education. At the outset of its grantmaking, the Robert Wood Johnson Foundation supported efforts to increase the palliative care content of national medical and nursing licensing exams. With that incentive in place, RWJF supported faculty development programmes for health professionals at the Harvard Palliative Care Education Center and as part of the Stanford Faculty Development Program. In nursing, the End-of-Life Nursing Education Consortium (ELNEC) project is providing palliative care education to more than 700 nursing school faculty, along with extensive teaching materials that can be easily integrated into existing nursing school curricula.

In addition, the Foundation has funded residency and continuing-medical-education initiatives. The Medical College of Wisconsin (MCW) received funding to provide palliative care education and training to internal medicine residency training programmes around the country. The success of this work has encouraged leaders in neurology and surgery to work with MCW to develop similar offerings for residency programmes in these subspecialties. The Foundation's support of the Palliative Care Faculty Leaders Program in partnership with the Department of Veterans Affairs has helped to increase palliative care content in education and training for residents and medical students, as well as to integrate it into patient care in the VA health system (which serves may chronically ill and vulnerable individuals). The Education for Physicians on End-of-Life Care (EPEC) programme has offered educational conferences on palliative care for 800 practising physicians to date. In turn, these physicians have used the EPEC curriculum to train an additional 50 000 physicians and 70 000 other health professionals through national conferences, grand rounds, and other venues.

With healthcare professionals more knowledgeable about palliative care, the next critical step is to make palliative care available to patients at the bedside. Using an incentive strategy, the Foundation supported the efforts of the Joint Commission on the Accreditation of Healthcare Organizations to collaborate with experts and develop new standards for the assessment and treatment of pain. These new standards became effective on 1 January 2001. Use of the accreditation process to encourage better pain management is a strategy that has substantial leverage since healthcare providers must be accredited if they are to be reimbursed by the major federal programmes, Medicare and Medicaid, as well as other payers.

Greater attention to pain management has spurred interest in increasing access to palliative care. To respond to the growing interest in making palliative care available to patients and their families, the Foundation supported the establishment of the Center to Advance Palliative Care (CAPC) at the Mount Sinai School of Medicine in New York. Its purpose is to help hospitals and health systems develop palliative care capability. By convening national and regional forums, by developing practical ‘how-to’ materials, and by partnering with key national organizations and leaders, CAPC is helping to create momentum. In response to a letter sent to the leaders of each of the 5000 hospitals in the country promoting the Bill Moyers' PBS documentary On Our Own Terms, which was partly funded by RWJF, more than 1300 hospitals requested information on how to establish a palliative care programme. A critically important step that remains is to ensure that hospital-based palliative care programmes have a solid financial footing. This will require the attention of public policymakers as well as local community philanthropy.

Future RWJF grantmaking will focus on continuing to make palliative care part of the US healthcare system and ensuring that the poor and disenfranchised can benefit from more humane care at the end of life. In addition, the Foundation will turn its attention to tracking key indicators to assess the progress that is being made. For example, evaluative efforts are underway to measure changes in medical and nursing school curricula, as well as the performance of medical students on the palliative care content of the US Medical Licensing Exam. Additionally, hospitals with palliative care programmes and their characteristics are being inventoried. These measures of structure and process changes are important, but the bottom line is whether patients are better off. To this end, RWJF is supporting a feasibility phase of a national hospice outcomes study that will examine patient outcomes along several key dimensions. There are also a handful of demonstration projects incorporating palliative care in the course of cancer treatment that are tracking pain and symptom control as well as emotional wellbeing and quality of life at the end of life. Foundations and other philanthropic activity are only one needed source of support for this important work. Public sector support for research and evaluation is warranted to develop indicators and assess progress.

Much remains to be done to ensure that people with life-limiting illness and their families have access to high quality care that is rendered with compassion. Local and national foundations can continue to help seed major changes in healthcare delivery that are long overdue. They can also help inform the public about how they can be assured of receiving the care they desire. Today, foundations are called upon to be more accountable for the funds they use, and to demonstrate that their grantmaking results in measurable improvements. They can do so by investing in initiatives to improve the care of the seriously ill and dying. For local foundations, improvement can be measured in terms of the gratitude expressed by those who reside in their communities. Compassionate care of the dying provides comfort and dignity to patients, is rewarding to clinicians, memorable to the family members left behind, and satisfying to funders who support the people doing this noble work.