The Need for Culturally-Based Palliative Care Programs for African American Patients at End-of-life
Patients facing life-threatening illness often experience unnecessary and preventable suffering including extreme and prolonged pain, psychological distress, as well as unsatisfactory communication with doctors, all of which result in enormous strain on patients and caregivers (Chochinov et al., 2009; Kamal et al., 2011; Morrison & Meier, 2011). It is common for needs in the physical, psychosocial and spiritual domains to be unmet (Zhukovsky, 2000). As a result, the last few weeks and months of life, and that of their loved ones, may be additionally burdened with physical, emotional and spiritual suffering. Palliative care programs, interdisciplinary care focused on relief of pain and other symptoms in support of best possible quality of life for patients with serious illness and their families, or consultations with palliative care experts where such team programs are not available, have been shown to reduce symptoms, alleviate suffering, improve doctor-patient communication and satisfaction with care, improve family satisfaction, and enhance the efficiency and effectiveness of hospital services (Bakitas et al., 2009a; Bakitas et al., 2009b; Casarett et al., 2008; Lagman, Rivera, Walsh, LeGrand, & Davis, 2007; Morrison & Meier, 2011; O’Hara et al., 2010), as well as to be associated with hospital cost savings (Morrison et al., 2008; Morrison et al., 2011; Penrod et al., 2010). Palliative care consultations for inpatients have successfully identified unrecognized symptoms and unmet problems (Abrahm, Callahan, Rossetti, & Pierre, 1996; Bailey et al., 2005; Bascom, 1997; Kuin et al., 2004; Manfredi et al., 2000), and have been associated with lower use of ICUs (Elsayem et al., 2006; Norton et al., 2007), lower likelihood of dying in ICU (Elsayem et al., 2006), lower costs of care (Penrod et al., 2006; Smith et al., 2003), and improvement in care processes, including medication prescribing and documenting patient goals for care(Bailey et al., 2005; Higginson et al., 2002; Higginson et al., 2003).
Ronit Elk, Ph.D is an Research Associate Professor at the University of South Carolina in the College of Nursing. Dr. Elk returned to academia at the University of South Carolina, to pursue her passion in health disparities and palliative care. Her current studies focus on developing culturally tailored Palliative Care programs for underrepresented elders in rural South Carolina, using a community based participatory research. The program will be one of the first in rural USA to use telemedicine to provide palliative care to elders at end of life, using a program that is being developed by the community for the community.
Prior to this position, Dr. Elk served as Director of the Extramural Cancer Control and Prevention Research Program at the American Cancer Society for 10 years, where she developed and directed: (a) Priority Program Focusing on Poor and Medically Underserved Population: During her tenure over 100 studies ($100 million) were funded, there was an increase in studies focusing on solutions to health disparities, as well as a significant increase in funding of minorities underrepresented in science. (b) A Palliative Care Research Initiative developed in partnership with the National Palliative Care Research Center (NPCRC), the first research-focused program for funding in palliative care research in the US.
Dr. Elk has written and edited several books. She is the author (with Dr. Monica Morrow) of “Breast Cancer for Dummies®.”She co-edited (with Dr. Hope Landrine)“Cancer Disparities: Causes and Evidence-Based Solutions, the first book on evidence-based solutions to cancer health care disparities. She is currently co-editing (with Dr. UliBoehmer) “Cancer in the LGBT Community: From Prevention to Survivorship”, the first book to focus on cancer in this underserved population.
Dr. Elk was born in Israel but grew up “in many countries.” As the daughter of the Israeli Ambassador to Turkey, India, Uganda, Kenya, South Africa and others, she moved with her family every few years. As a child she attended 12 schools, often with a different language, culture and philosophy, until graduating from high school in South Africa. She received her Bachelors, Honors, Masters and PhD from the University of Cape Town in South Africa. Dr. Elk has lived “joyously” in the United States for twenty-seven years.
"The Need for Culturally-Based Palliative Care Programs for African American Patients at End-of-life,"
Journal of Family Strengths: Vol. 17:
1, Article 14.
Available at: https://digitalcommons.library.tmc.edu/jfs/vol17/iss1/14