Editor’s note: This post is part of a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series features essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.
Racial and ethnic disparities in health care have been well documented among minority groups with respect to access to care, receipt of care, and quality of care. As a result of these disparities, minority populations are often diagnosed with late stage illness and have inferior outcomes likely leading to increased suffering.
Little is known, however, about disparities in access to and use of specialty palliative care. Palliative care is medical care aimed at relieving suffering and providing the best possible quality of life for people facing pain, symptoms, and stresses from serious illness. Palliative care is appropriate for patients at any age or illness stage and can be provided along with curative or life-prolonging therapies.
As the population of minority older adults continues to rapidly increase, many will have to deal with the challenges of serious illness. Ensuring the availability of high quality palliative care that can meet the needs of this population is paramount.
Access to Care
The availability of palliative care has increased tremendously over the last decade. Among all hospitals, 63 percent report having the presence of a palliative care team and among large hospitals (equal to or more than 300 beds), 85 percent report a palliative care team. Unfortunately, only half of public safety net hospitals have a palliative care team. This almost certainly contributes to underutilization of palliative care among minority patients.
Minority patients do not have equal access to pain care in the U.S. This spans across all health care settings, including emergency rooms, inpatient services, outpatient clinics, and nursing homes. This observed disparity is often attributed to system-related factors such as reduced access to specialty care and lack of adequate health insurance. As a result, racial/ethnic minority patients are less likely to report finding pain specialists available to them compared to non-Hispanic white patients.
Even when socioeconomic status is the same, minority patients remain at risk for disparities in treatment for pain. Decreased availability of analgesic medications is a potential barrier to pain management. Pharmacies located in minority neighborhoods are much more likely to have inadequate opioid stocks.
In an effort to curtail the rising rates of controlled substance abuse and diversion, increasing restrictions on prescribing practices of physicians are being developed at both the state and federal level. The majority of patients enrolled in state Medicaid programs consist primarily of minority populations. Many programs have created strict criteria for authorization and coverage of opioids. These regulations lead to decreased prescribing practices, which in turn may widen the observed disparity and access to these important medications.
Receipt of Care
There are racial/ethnic differences in the receipt of and preferences for advance care planning, aggressive disease-directed treatments, and life sustaining technologies in the context of end-stage disease. Similarly, minority patients more often want more intensive intervention and life-prolonging treatment in the face of serious illness. In fact, minority patients report a higher willingness to exhaust personal financial resources on medical care in an attempt to extend life.
Disparities also exist in receipt of appropriate patient-physician communication. Physicians appear to deliver less information and communicate less support to African-American and Hispanic patients compared to white patients, even in the same care settings. Furthermore, minority patients often do not receive treatment consistent with their wishes even when their wishes are known.
Health care providers’ culture, religion, and ethnicity play an active role in their decision to explain palliative care to patients and to participate in decision-making about palliative care. When providers and patients differ in culture, religion, and ethnicity, the providers are less likely to explain palliative care.
Furthermore, physicians are often the primary source of education and referrals for their patients, but they too often lack knowledge of the range of services provided by palliative care. Referral of patients with serious illness for palliative care is often infrequent and delayed until after discontinuation of disease-directed treatment despite evidence that early use of palliative care improves patient outcomes.
Quality of Care
The Institute of Medicine defines superior quality care as care that is effective, safe, timely, patient-centered, efficient, and equitable. There is little known about the impact of specialty palliative care consultation on outcomes of minority patients. However, inpatient palliative care consultation was associated with higher rates of advance directive completion and DNR orders among African-American and Hispanic patients.12
The National Healthcare Quality Report (NHQR) and the National Healthcare Disparities Report (NHDR) are published annually by the Agency for Healthcare Research and Quality. These reports track five measures of palliative care delivered by home health agencies, nursing homes, and hospices: dyspnea among home health care patients; pressure sores in nursing home residents; help with emotional and spiritual needs provided to hospice patients; effective communication about what to expect among hospice family caregivers; and provision of care consistent with patients’ wishes among those enrolled in hospice.
These reports have identified racial and ethnic disparities across all measures with minority patients consistently receiving poorer quality care. With the exception of the measures focusing on the care of hospice patients, the influence of specialty palliative care physicians and other important metrics in palliative care are not currently measured.
To improve minority patient’s access to and receipt of quality palliative care, a multilevel intervention is necessary.
Increased Research. Understanding the components of care that are most important to minorities will assist with developing palliative care programs that are culturally appropriate. Currently, only 0.2 percent of all grants from the National Institutes of Health (NIH) are related to palliative care. This research should focus on the common beliefs and attitudes of minority patients and their caregivers that may affect the utilization of specialty palliative care and influence its delivery.
The Patient Centered Quality Care for Life Act (HR 1666, introduced April 23, 2013) is proposed legislation that aims to expand the research base, improve training, and focus attention on health professionals, patients, public and private payers, and state and federal health officials to develop solutions and tools and model best practices for providing better palliative care.
Increase Public Awareness and Access. The vast majority of patients are unaware of the existence of palliative care and the value of the care provided by this specialty. However, most patients believe palliative care is important and beneficial when it is explained to them. The belief among minorities that palliative care will deprive them of beneficial life prolonging medical care can be overcome by integrating simultaneous palliative care into the current health care delivery infrastructure.
Major accreditation and certification organizations should require access to palliative care as a condition of accreditation and certification. Similarly, financial incentives to health care systems that provide access to palliative care and penalties for failure in providing these services should also be created.
One example includes utilizing a value-based payment system in which providers and organizations that utilize palliative care to reduce health care utilization and increase the quality of care instead of the fee-for-service system in which organizations rely on inpatient revenue.
A simultaneous effort is needed to engage community-based organizations to promote public awareness campaigns using individuals from the community as educators, spokespersons, outreach workers, and liaisons to stimulate the development of these integrated programs.
Increase Professional Workforce Capacity. Postgraduate training opportunities for all disciplines involved in providing palliative care, such as graduate medical education slots, should be increased. There is a critical need to develop interdisciplinary learning opportunities for health care professionals, clergy, and social workers that will provide services to minority patients facing serious illness and their families.
Specific loan forgiveness programs for physicians and advance-practice nurses should also be established to encourage and support entry into this field. The Palliative Care and Hospice Education and Training Act is legislation that addresses a major barrier facing the expansion of palliative care by training medical school faculty and creating new incentives for the training and development of interdisciplinary health professionals in palliative care.
Provide Primary Palliative Care Education. A renewed focus on teaching basic primary palliative care skills to practitioners in each medical specialty is paramount to ensuring that minority patients receive the core aspects of palliative care. Core palliative care competencies should be mandated in undergraduate and postgraduate education as a condition of accreditation.
This teaching must include content on cultural traditions, values, beliefs, and attitudes of a number of commonly encountered races and ethnicities so that service providers will better understand, acknowledge, and act to overcome the effects of racism, discrimination, and bias on patient participation in and response to beneficial interventions.
Create Novel Models of Care Delivery. National initiatives must be funded to evaluate novel models of care delivery to promote efforts to improve access to palliative care among members of minority populations. This is especially important as the number of older minorities in community settings, such as nursing homes, continues to rise.
Providing longitudinal, community-based, palliative care to patients living with serious illness who are well enough to be in home-like settings yet, who experience the very real burdens of advanced and progressive illness is critically important.
These models can serve as a system for coordination of care and can assist with streamlining the transition from palliative to end-of-life care when disease-focused treatments are no longer effective or their burden clearly outweighs their benefit. Funding of these demonstration projects and integration of the models that are most effective in providing culturally competent palliative care will be essential in improving the access to palliative care among minorities.