The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

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A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 14: Culture and CareLife-Prolonging TreatmentIn an article concerning the implementation of the Patient Self-Determination Act of 1991,Young26andpicasJex pointed out that African Americans tend to equate life support with life, and viewthe withholding of any life-sustaining therapies as another attempt at genocide by the system. 53Therefore, African Americans might be reluctant to consider palliative care as a treatment optionfor fear that it might result in neglect or being allowed to die prematurely. 28In a study comparing attitudes toward life-prolonging treatments among 139 patients at a generalmedicine clinic, only 63% of African Americans approved of stopping life-prolonging treatments,compared to 89% of Caucasians. Furthermore, 35% of Caucasians approved of physicianassistedsuicide, compared with only 16% of African Americans. 22 Finally, Caralis, et al. in their1993 study found that African Americans were more likely than the general population to chooselife-prolonging treatments, even in the face of a poor outcome. 22InterventionsIn view of the long history of discrimination to which African Americans have been subjectedover the years, the single most important intervention that must be made is to develop a sense oftrust and reliability. This ongoing process will require open and continuous communicationbetween the health care provider and the African American community. The recruitment ofmore African American health care providers, preferably members of the local community, willhelp overcome distrust of institutions by the African American community, and will establishbetter lines of communication between the community and the health care organization. Community-basedorganizations should be developed to identify and address the specific health careconcerns of local African American communities.One such organization is the Harlem Palliative Care Network in New York City, whose specificobjectives are as follows:• To increase access to palliative care services for patients and theirfamilies residing in Central and East Harlem who are facing progressive,life-threatening illness• To overcome cultural and environmental barriers among minority populationsin receiving timely intervention• To enhance the continuity and coordination of care through greater integrationof community-based and institutional services• To improve the quality of life for Harlem patients through better pain andsymptom management• To provide support services to meet the emotional and spiritual needs of thepatients and their families 54Since research has shown that many African Americans lack knowledge about palliative careand hospice programs, 55 education is of prime importance. Physicians should be included ineducation because many lack knowledge of the broad range of palliative care interventions,particularly pain management. For this there are resources for up-to-date training on palliativecare, such as Education for Physicians in End of Life Care (EPEC), http://www.epec.net.310U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 14: Culture and CareBecause religion and spirituality play such important roles in the African American community,the involvement and education of the clergy and local church community cannot be overemphasized.This education should include prevention, intervention and life enhancement in HIV/AIDS. It26shouldpicasalso include a thorough understanding of palliative care and the role of hospice.Thus empowered, the church will be able to deal with controversial issues associated with HIV/AIDS, such as drug abuse, sexual promiscuity and homosexuality, as well as help African Americansovercome the perception that palliative care treatment modalities are an abandonment ofcare. 56 The church can provide not only spiritual support, but also, practical social supportthrough its various lay organizations.Finally, whenever possible, recognition should be made of the role African American familymembers play in the treatment, care, and support of patients living with HIV/AIDS. It is in thefamily and the core values that bind it together that African American patients will find thestrength and support they need to face end-of-life issues.CONCLUSION■ While health care providers treating persons with HIV/AIDS cannot become familiar withevery cultural issue related to medicine, they can become more sensitive to the role that cultureplays in how people access and experience palliative care services. Recognizing the role of cultureand being familiar with the core values of a cultural group will not only aid in eliminatingbarriers to treatment, but also optimize patient care, particularly end-of-life care.XIVU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 311
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DedicationA Clinical Guide to Suppo
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Lynn A Jansen, RN, PhDAssistant Res
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TABLE OF CONTENTSPart IChapter 1Cha
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IChapter 1.26 picasHIV and Palliati
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IA Clinical Guide to Supportive and
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A Clinical Guide to Supportive and
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IIIChapter 3.Assessment of Physical
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Chapter 6.26 picasPulmonary Symptom
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Chapter 8.26 picasOral ProblemsDavi
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Chapter 9.26 picasDermatologic Prob
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Chapter 10.26 picasPsychiatric Prob
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Chapter 11.26 picas Substance Use P
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Chapter 18.26 picasLegal and Financ
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Chapter 19.Palliative 26 picas Care
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Chapter 25.26 picas Prevention of S
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Chapter 26.26 picasResourcesMagda B
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DRUGS AND THERAPIES INDEXNOTES: Ent
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