Recommendations for Action

Recommendations for Policymakers: Workforce > Research > Access and Quality

Recommendations for Patients and Families

Policy Initiatives to Support Palliative Care

Palliative care treats the pain and other debilitating symptoms of serious and chronic illness. By efficiently improving quality of care geared to our sickest, most vulnerable patients, it is emerging as a critical component of health reform.

Recent public opinion research by the national polling firm Public Opinion Strategies has shown that once informed about palliative care, 92 percent of the American public are highly likely to consider palliative care for themselves or their families if they have a serious illness. Ninety-two percent also said it is important that palliative care services be made available at all hospitals for patients with serious illness and their families throughout the United States.^[1] The data also show a positive response to palliative care regardless of party affiliation.

Despite the considerable growth in the number of palliative care programs across the United States, barriers in three key areas—workforce, research and access—currently prevent full availability of palliative care for all patients and families facing serious or life-threatening illness. Specifically, three key policy initiatives are needed:

Investment in a trained workforce to ensure sufficient numbers of specialists both to teach all clinicians the fundamentals and to directly provide high-quality palliative care for the highest-risk and most complex patients;
Investment in the research necessary to establish a strong science base for palliative care and to expand palliative care’s ability to improve both quality and length of life;
Investment in health care system capacity by requiring delivery of high-quality palliative care in hospitals, nursing homes and community settings through changes in measurement, payment and accreditation standards.

Workforce

A major barrier facing the expansion of palliative care services is the lack of palliative medicine physicians. Where there is approximately one cardiologist for every 71 persons experiencing a heart attack and one oncologist for every 141 newly diagnosed cancer patients, there is only one palliative medicine physician for every 1,200 persons living with a serious or life-threatening illness.

There are two principal reasons for the shortage of palliative medicine providers. First, palliative medicine is a new specialty, formally recognized in 2007. Thus, although the number of training programs is increasing, as of 2010 there were only 73 accredited allopathic subspecialty training fellowship programs in the United States, collectively producing approximately 86 new palliative medicine physicians per year.^[2] Second, Medicare funding, which currently supports the majority of post–medical school residency training for physician specialties in the United States, does not support palliative medicine specialty training. This is a consequence of the 1997 Balanced Budget Act’s cap on Medicare-funded graduate medical education (GME) slots. The majority of academic medical centers—the site of training for medical students, residents and fellows—currently are at or exceed their GME residency cap. As a result, Medicare dollars are unavailable for training palliative medicine physicians, and current palliative medicine fellowship training programs are inadequately supported by scarce philanthropic dollars.

Three initiatives are necessary to ensure that Americans with serious illness and their families have access to quality palliative care. First, future generations of palliative medicine specialists require support and expansion of palliative medicine fellowship training programs. Demand for this training is high, as palliative medicine is the fastest-growing medical subspecialty in the United States and expansion and support of fellowship programs is needed. Second, a substantial number of midcareer physicians are seeking training in order to transition from their current field of practice into palliative medicine. Third, all physicians who care for patients with serious illness should be trained in the core principles of palliative medicine to ensure that they know how to communicate with seriously ill patients and treat pain and other distressing symptoms.

Several policy initiatives are likely to have a major impact on increasing the current number of palliative care clinicians, including proposals to:

Lift the GME cap on Medicare-funded residency positions and redistribute unused GME slots to support Accreditation Council for Graduate Medical Education (ACGME)–approved palliative medicine fellowship training.
Establish loan-forgiveness programs for palliative care physicians and nurses through the Health Resources and Services Administration (HRSA) to promote palliative care as a viable career path for young health care professionals.
Create HRSA Title VII–supported career development awards (similar to Geriatric Health Professions Training Programs) to support clinician-educators who can integrate palliative care into medical, nursing school and postgraduate training curricula.
Establish HRSA awards to support retraining of midcareer current medical and nursing workforce for this new specialty.
Require CME training for referring physicians as a condition of licensure at the state level—similar to California’s provision for pain management training—that would ensure physician competency in the core principles and practice of palliative medicine.

Research

Increased funding for palliative care research is needed to strengthen clinical practice and improve health care delivery that will maximize quality of life for patients and families facing serious and chronic illnesses.

The National Institutes of Health (NIH) and the Institute of Medicine have repeatedly called for substantial investments in palliative care research. Yet, as of 2009, there were only 114 active awarded NIH grants supporting palliative care research. While the growth of the palliative care field has been remarkable, there is a need to strengthen the knowledge base that supports basic elements of clinical practice in pain and symptom management, communication skills and care coordination. To that end, specific focus areas and funding mechanisms for palliative care research should be developed in all NIH institutes, the Agency for Healthcare Research and Quality (AHRQ) as well as the Veterans Administration.

Policy initiatives to address this knowledge gap are straightforward and easily integrated within current biomedical research funding structures:

NIH/AHRQ should allocate 2 percent (increase from 0.01 percent between 2003–2005) of their current budgets to focus on symptom relief, communication in the setting of serious illness and research focused on the impact of concurrent palliative care along with disease-directed therapies for patients with serious illness.
NIH should establish an Office of Palliative Care Research modeled after the Office of AIDS Research to oversee and ensure appropriate distribution of research funding.
Existing NIH career development award mechanisms should be utilized to support junior investigators and midcareer palliative care investigators in order to build a critical mass of established palliative care researchers.

Access and Quality

While physician and (in some states) advanced practice nursing services provided by a palliative care team are covered by most private insurance, as well as Medicare and Medicaid, palliative care is not readily accessible to all Americans. It is offered primarily in hospital settings, with only a few major medical centers providing outpatient or home-delivered palliative care programs. As of 2009, 63 percent of U.S. hospitals with at least fifty beds and 85 percent of hospitals with more than 300 beds reported the presence of a palliative care team. While this represents an increase of 138 percent from 2000, it is not good enough. Currently, there are only about 1,568 hospitals out of a total of 2,489 (American Hospital Association estimate for 2010) nationwide that offer some type of palliative care program.

Part of the problem is that the current business model for palliative care is based on cost avoidance (reducing unwanted and unnecessary utilization) rather than on revenue generation. This model is unusual in health care, requires sophisticated analytic methods to employ successfully and is thus difficult to integrate into hospitals’ current operating metrics. Additionally, accreditation standards for hospitals and nursing homes do not currently require the presence of a quality palliative care program despite publication of consensus standards by the National Quality Forum (NQF). Near-term policy solutions that could increase access to quality palliative care are as follows:

The reimbursement structure for palliative care should enable hospitals and nursing homes to support provision of palliative care services. Palliative care specialists, like critical care physicians, should be compensated at a level commensurate with the complexity and seriousness of illness in the patients they are serving. That includes the work of the entire interdisciplinary team (doctor, nurse, social worker and others). Advanced practice nurses delivering palliative care are allowed to bill fee for service in some states, but not all. To improve access to palliative care services throughout the country, advanced practice nurse compensation should be standardized.
Given the high costs and poor quality of care received by patients with serious illnesses, new delivery and payment models rewarding whole-person care instead of fragmented fee-for-service care should ensure access to palliative care as a core component of available services.
Palliative care teams meeting quality standards should be a condition of accreditation for all U.S. hospitals and nursing homes.

Recommendations for Hospitals

If you are a hospital administrator or clinician:

Implement a palliative care program in your hospital that meets the quality standards published by the National Quality Forum (NQF) in its report A National Framework and Preferred Practices for Palliative and Hospice Care Quality (www.qualityforum.org/publications/reports/palliative.asp). Access comprehensive training tools, including a CAPC crosswalk with NQF preferred practices for palliative care (available at www.capc.org).
Provide comprehensive information about palliative care to your patients. Patients and families often wait for their physician to recommend palliative care services. They don’t know when to ask for palliative care, whom to ask or what kinds of services to request.
Educate your clinical staff in the principles and practices of palliative medicine through continuing medical and nursing education programs.

If you are an administrator or clinician in a medical school:

Include education in pain and symptom management, communication training (e.g., “breaking bad news,” establishing goals of care, deciding on treatments) and working on an interdisciplinary team in the first and second years of medical school.
Include mandatory clinical rotations in palliative medicine in the third and fourth years of undergraduate training for all medical students.

If you are an administrator or clinician in a teaching hospital:

Increase opportunities for medical residents to train on hospital palliative care teams and outpatient hospice programs.
Increase the number of postgraduate fellowship training programs in palliative care.

For a directory of hospital palliative care programs by state, visit getpalliativecare.org

Recommendations for Patients and Families

Go to the Palliative Care Directory of Hospitals at getpalliativecare.org to see which hospitals in your area have a palliative care team.
If you're already in the hospital, ask your doctor to refer you to the palliative care team.
Let your family caregivers know that you want palliative care your treatment team.
If your hospital does not have a palliative care team, write to your hospital CEO and your state and federal representatives and ask them to ensure that palliative care becomes a core component of your hospital's services.

[1] Public Opinion Strategies Poll, April 2011.

[2] Accreditation Council for Graduate Medical Education website, www.acgme.org. Accessed June 16, 2011.