In California, the most populous and diverse state in the country, significant racial and ethnic differences exist at the end of life, according to several reports commissioned by the California HealthCare Foundation. These reports – the first in a new series of CHCF-supported projects focusing on end-of-life issues – found significant variations in the expectations, experiences, and decisions of patients and their families in the months preceding death.
“As California’s diverse population grows older, ensuring quality care at the end of life for everyone takes on even greater significance,” Mark D. Smith, M.D., M.B.A., president and CEO of CHCF, said Thursday at the Association of Health Care Journalists conference in Los Angeles. “By supporting research and projects to improve the quality of end-of-life care, CHCF sees an opportunity to help make California a national example of best medical practices and culturally appropriate care.”
One report released today, Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California, reviews and analyzes current data, along with new research from focus groups and surveys. The report examines the causes and patterns of death and dying and the impact on the delivery of health care.
“Focusing on patterns across populations can reveal information about access and disparities and is useful for policymakers thinking about improving the health care system,” said LaVera Crawley, M.D., M.P.H., a Stanford University medical ethics researcher and lead author of the report. “Clinical providers, on the other hand, should balance these racial, ethnic, and cultural factors with the preferences of each individual patient.”
The key findings include:
Cultural, Coverage Gaps in Hospice Care
Hospice care is generally considered the “gold standard” for end-of-life care in California and across the country. However, there is wide variation in preferences for care among various racial and ethnic populations. In addition, there are significant limitations on the availability and appropriateness of hospice for some patients.
- Requirements for hospice enrollment can conflict with the preferences of patients; in particular, African Americans and Latinos may not want to forgo acute therapies not covered by Medicare’s hospice benefit, the report concluded. Medicare and most private insurance companies require a life-expectancy prognosis of six months or less to be eligible for hospice services and do not cover care that combines both hospice (pain management and supportive services) and such curative or life-prolonging services as chemotherapy or dialysis.
- Ethnically diverse populations are significantly less likely to use hospice care than whites. In 2004, for example, of those who died while receiving hospice services, only 4% were Asian American, 6% were African American, and 15% were Latino, contrasted with 74% who were white.
- Sudden deaths due to accidents and assaults are comparatively higher among young Latinos (16%), African Americans (11%), and Native Americans (14%) than among whites (7%) and Asian Americans (8%). However, the report found that some end-of-life services, such as family support programs and bereavement counseling, are lacking in most emergency departments.
Palliative Care, Competence Fall Short
While the majority of Californians die in hospitals and nursing homes, few of the state’s hospitals – and even fewer skilled nursing facilities – offer organized palliative care services, according to the report. (Palliative care is the term for providing care for symptom relief and improved quality of life, rather than care aimed at a cure. Palliative care can be provided simultaneously with curative treatment.) Regarding other palliative care issues, the report found:
- The undertreatment of pain is prevalent among the elderly, poor, and racial and ethnic minorities.
- Recent legislation requiring palliative care training for physicians in order to renew their medical licenses did not address cultural sensitivity even though many may lack those skills. The report recommends new training opportunities for the broad spectrum of the EOL health care workforce.
Communication and Trust
Language barriers, lack of clinician training, and miscommunication can result in mistrust, said Dr. Crawley. “Mistrust is not the solitary experience of the patient, but rather the outcome of a process involving at least two parties – the one who trusts and the one who is trusted.”
“Clearly race and ethnicity are important – but not the sole determinant – in end-of-life preferences and care,” said Dr. Smith. “CHCF will continue to work in this area to promote care that is consistent with patient and family wishes, cost-effective, and based on the best clinical evidence.”
CHCF has compiled the following materials about end-of-life care:
- Attitudes Toward End-of-Life Care in California (results of a statewide telephone survey conducted in 2006)
- Death and Dying in California(snapshot)
- Hospice in California: A Look at Cost and Quality (snapshot)
These materials and Dr. Crawley’s report are available through the links below. An audio report of Dr. Smith’s press briefing will be available soon.
About the Report
On behalf of CHCF, the report’s authors (LaVera Crawley, M.D., M.P.H. and Marjorie Kagawa Singer, Ph.D., R.N., M.N.):
- Performed a comprehensive systematic review of qualitative and quantitative literature on core end-of-life issues, conducted by the Agency for Healthcare Quality and Research;
- Analyzed 2004 Death Public-Use Files from the California Department of Health Services, Office of Health Information and Research;
- Conducted focus groups with health care providers in Los Angeles and Fresno;
- Conducted original survey research with pharmacies in Fresno;
- Reviewed curriculum offerings to meet the AB 487 mandate;
- Conducted narrative interviews with selected key informants, identified experts and other stakeholders; and
- Incorporated co-authors’ previous scholarship and work in this area.
About the California Health Care Foundation
The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.