Hospice and palliative care programs across the country provide a tremendous service to those requiring palliation of burdensome symptoms and to those in the terminal stages of their disease trajectories. These services, which are provided by a multidisciplinary team of physicians, nurses, social workers, spiritual care personnel, bereavement counselors and volunteers, have shown to improve the care of persons in need of pain and symptom management and psychosocial support – be they continuing with curative therapy or nearing the end of life. Historically, persons of underrepresented racial and ethnic groups have underutilized these services; however, recent data suggests that the gap in utilization of hospice and palliative care is closing.1
Despite increased utilization, racial differences continue to exist in the perceptions of the quality of care provided to patients that may benefit from palliative care and other support services. African American cancer patients have reported more problems with coordination of care and psychosocial care as well as more severe symptomatology than patients of other ethnic groups.2,3 Furthermore, studies have shown that there are differences in treatment patterns, pain management, and the use of hospice care between African American women and women in other ethnic groups.4 These differences also exist in the perception of the quality of care patients receive at the end of life. In research conducted by Welch et al, bereaved family members of African American decedents were found to have more concerns with the care provided to their loved one during the dying process than bereaved family members of white decedents. They were more likely to report absent or problematic physician communication, concerns with being informed, and concerns with family support. Bereaved family members of African American decedents were also less likely to rate the care they received as excellent or very good.5
One of the goals of my research has been to examine racial and ethnic disparities associated with the access to hospice and palliative care. In an attempt to understand historically documented underutilization of hospice by members of the African American community, I, with assistance from my mentor Dr. Joan Teno, conducted a secondary analysis of a national mortality follow-back survey. The respondents of this survey were bereaved family members of persons who died in the year 2000. In this study, we found that almost 70 percent of African American decedents did not receive hospice services, and of those, slightly more than half (54 percent) were not informed about hospice as an option for care at the end of life.6
An additional goal of my research has been to carry forward the work conducted by Welch and colleagues by examining disparities in perceptions of the quality of care received while on hospice. This was done by conducting a secondary analysis of the 2005 Family Evaulation of Hospice Care survey (FEHC). The FEHC is a 61-item questionnaire that surveys family members about care provided to the decedent by the hospice. Hospices submit their data to the National Hospice and Palliative Care Organization (NHPCO), where results are tabulated.7 Our study revealed that though bereaved family members’ perceptions of the quality of care they receive improve with hospice enrollment, opportunities for improvement remain. Family members of African Americans were more likely than white family members to report concerns with unmet needs for pain, lack of provision of emotional support, and being informed of their loved one’s condition. Additionally, they continued to be less likely to rate the care they received as excellent.8 These findings suggest that though the disparity in access to care may be closing, the disparities associated with perceptions of the quality of care provided persist. Now that these racial differences have been identified, future research should include identification of individual, organizational and market-level factors that contribute to these disparities and the creation of multifaceted interventions to reverse the disparities in perception of hospice care quality that have been identified.
Ramona Rhodes MD, MPH
Assistant Professor, Center for Gerontology and Health Care Research
Brown University, Division of Geriatric Medicine
Rhode Island Hospital
References
1. NHPCO’s Facts and Figures: Hospice Care in America, November 2007 Edition. The National Hospice and Palliative Care Orgnaization. http://www.nhpco.org/files/public/Statistics_Research/NHPCO_facts-and-figures_Nov2007.pdf. (Accessed June 3, 2008).
2. Rao D, Debb S, Blitz D et al. Racial/Ethnic Differences in the Health-Related Quality of Life of Cancer Patients. Journal of Pain and Symptom Management. 2008; 24.
3. Ayanian JZ, Zaslavsky AM, Guadagnoli E, et al. Patients' Perceptions of Quality of Care for Colorectal Cancer by Race, Ethnicity, and Language. Journal of Clinical Oncology. 2005; 23:6576-6586.
4. Payne R, Medina E, Hampton JW. Quality of Life Concerns in Patients with Breast Cancer: Evidence for Disparity of Outcomes and Experiences in Pain Management and Palliative Care Among African-American Women. Cancer. 2003;97 (1 suppl):311-317.
5. Welch LC, Teno JM, Mor V. End-of-life care in black and white: Race matter for medical care of dying patients and their families. Journal of the American Geriatrics Society. 2005;53:1145-1153.
6. Rhodes RL, Teno JM, Welch LC. Access to Hospice for African Americans: Are They Informed about the Option of Hospice? Journal of Palliative Medicine. 2006;9:268-272.
7. Connor SR, Teno J, Spence C et al. Family Evaluation of Hospice Care: Results from Voluntary Submission of Data Via Website. Journal of Pain and Symptom Management. 2005;30:9-17
8. Rhodes RL, Teno JM, Connor SR. African American Bereaved Family Members’ Perceptions of the Quality of Hospice Care: Lessened Disparities, but Opportunities to Improve Remain. Journal of Pain and Symptom Management. 2007;34:472-479