Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-22T18:18:55.082Z Has data issue: false hasContentIssue false
  • English
  • Français

Community outreach to patients with AIDS at the end of life in the inner city: Reflections from the trenches

Published online by Cambridge University Press:  12 May 2005

HECTOR LA FOSSE ,
CHARLES E. SCHWARTZ ,
ROSA J. CARABALLO ,
WILLIAM GOEREN  and
PETER A. SELWYN
HECTOR LA FOSSE
Affiliation:
Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
CHARLES E. SCHWARTZ
Affiliation:
Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York Department of Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
ROSA J. CARABALLO
Affiliation:
Bruised Reed Ministry, Bronx, New York
WILLIAM GOEREN
Affiliation:
Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
PETER A. SELWYN
Affiliation:
Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
Get access Rights & Permissions [Opens in a new window]

Abstract

Indigenous community health outreach workers (CHWs), who serve as a bridge between underserved, difficult-to-reach minority populations and health professionals, can play a critical role in bringing palliative care to patients dying of AIDS and other illnesses in the inner city. Although the contribution of CHWs in the delivery of “curative” and preventive services has been well established, little attention has been given to CHWs in palliative care.

Integrating the medical literature with experiences of a team providing HIV palliative care in the Bronx, a descriptive typology of critical stages and components in the work of CHWs in end-of-life care in the inner city is presented. A longitudinal case narrative, told from the perspective of the CHW, is used to demonstrate the richness and complexity of the CHW's role.

The article concludes with a description of the experience of the CHW, straddling two worlds—the world of the inner city patient and the world of the health care providers—and explores the special characteristics of the individuals who can fill this vital role in palliative care.

Keywords

HIVPalliative careOutreachHealth workerTherapeutic allianceMarginalized
Type
REVIEW ARTICLE
Information
Palliative & Supportive Care , Volume 2 , Issue 3 , September 2004 , pp. 305 - 314
Copyright
© 2004 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Angelino, A.F. & Treisman, G.J. (2001). Management of psychiatric disorders in patients infected with human immunodeficiency virus. Clinical Infectious Diseases, 33, 847–856.Google Scholar
Anthony, W.A., Cohen, M., Farkas, & M., et al. (1988). The chronically mentally ill case management—More than a response to a dysfunctional system. Community Mental Health Journal, 24, 219–228.Google Scholar
Bonham, V.L. (2001). Race, ethnicity, and pain treatment: Striving to understand the causes and solutions to the disparities in pain treatment. Journal of Law, Medicine and Ethics, 29, 52.Google Scholar
Brechtl, J.R., Breitbart, W., Galietta, & M., et al. (2001). The use of highly active antiretroviral therapy (HAART) in patients with advanced HIV infection: Impact on medical, palliative care and quality of life outcomes. Journal of Pain and Symptom Management, 21, 41–51.Google Scholar
Breitbart, W., Rosenfeld, B., Passik, & S.D., et al. (1996). The undertreatment of pain in ambulatory AIDS patients. Pain, 65, 243–249.Google Scholar
Breitbart, W., Rosenfeld, B., Passik, & S.D., et al. (1997). A comparison of pain report and adequacy of analgesic therapy in ambulatory AIDS patients with and without a history of substance abuse. Pain, 72, 235–243.Google Scholar
Castro, F.G., Elder, J., Coe, & K., et al. (1995). Mobilizing churches for health promotion in Latino communities: Campaneros en la Salud. Journal of the National Cancer Institute. Monographs, 18, 127–135.Google Scholar
Centers for Disease Control and Prevention. (2000). HIV and AIDS—United States. Morbidity and Mortality: Weekly Report, 50, 430–434.Google Scholar
Chen, M.S. (1999). Informal care and the empowerment of minority communities: Comparisons between the USA and the UK. Ethnicity and Health, 4, 139–151.Google Scholar
Dixon, L., Stewart, B., Krauss, & N., et al. (1998). The participation of families of homeless persons with severe mental illness in an outreach program. Community Mental Health Journal, 34, 251–259.Google Scholar
Doyle, D., Hanks, G.W.C., & McDonald, N. (eds.) (1998). Oxford Textbook of Palliative Medicine. New York: Oxford University Press.
Easterbrook, P. & Meadway, J. (2001). The changing epidemiology of HIV infection: New challenges for HIV palliative care. Journal of the Royal Society of Medicine, 94, 442–448.Google Scholar
Elwood, W.N., Montoya, I.D., Richard, & A.J., et al. (1995). To hang in the ‘hood’: Description and analysis of outreach activities. Journal of Psychoactive Drugs, 27, 249–259.Google Scholar
Erlen, J.A., Mellors, M.P., Sereika, & S.M., et al. (2001). The use of life review to enhance quality of life of people living with AIDS: A feasibility study. Quality of Life Research, 10, 453–464.Google Scholar
Felix-Aaron, K.L., Bone, L.R., Levine, & D.M., et al. (2002). Using participant information to develop a tool for the evaluation of community health worker outreach services. Ethnicity and Disease, 12, 87–96.Google Scholar
Foley, F. (1994). AIDS palliative care. Abstract: 10th International Congress on the Care of the Terminally Ill. Journal of Palliative Care, 10, 132.Google Scholar
Fried, O. (2000). Providing palliative care for aboriginal patients. Australian Family Physician, 29, 1035–1038.Google Scholar
Gaffin, J., Hill, D., & Penso, D. (1996). Opening doors: Improving access to hospice and specialist palliative care services by members of the black and minority ethnic communities. Commentary on palliative care. British Journal of Cancer, 29(Suppl 1996), S51–S53.Google Scholar
Gibson, R. (2001). Palliative care for the poor and disenfranchised: A view from the Robert Wood Johnson Foundation. Journal of the Royal Society of Medicine, 94, 486–489.Google Scholar
Gladwell, M. (2002). The Tipping Point: How Little Things Make a Big Difference. Boston: Little Brown and Company.
Goulet, J.L., Molde, S., & Constantino, J. et al. (2000). Psychiatric morbidity and the long term care of people with AIDS. Journal of Urban Health, 77, 213–221.Google Scholar
Grady, P.A., Knebel, A.R., & Draper, A. (2001). End-of-life issues in AIDS: The research perspective. Journal of the Royal Society of Medicine, 94, 479–482.Google Scholar
Grond, S., Zech, D., Diefenbach, & C., et al. (1996). Assessment of cancer pain: A prospective evaluation in 2266 cancer patients referred to a pain service. Pain, 64, 107–114.Google Scholar
Hardt, E.J. (1987). The bilingual medical interview. Section of General Internal Medicine, Boston City Hospital, Department of Interpreter Services, The Boston Area Health Education Center.
Hess, M. (1999). The new Palliative Care Outreach Program—A resounding success. Supportive Care in Cancer, 7, 298–301.Google Scholar
Jack, C.M., Penny, L., & Nazar, W. (2001). Effective palliative care for minority ethnic groups: The role of a liaison worker. International Journal of Palliative Nursing, 7, 375–380.Google Scholar
Kelleher, P., Cox, S., & McKeogh, M. (1997). HIV infection: The spectrum of symptoms and disease in male and female patients attending a London hospice. Palliative Medicine, 11, 152–158.Google Scholar
Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
Koenig, H.G., McCullough, M.E., & Larson, D.B. (2001). Handbook of Religion and Health. New York: Oxford University Press.
La Rue, F., Barsseur, L., Musseault, & P., et al. (1994). Pain and symptoms in HIV disease: A national survey in France. Abstract: Third Congress of the European Association for Palliative Care. Journal of Palliative Care, 10, 95.Google Scholar
Marks, R.M. & Sacher, E.J. (1973). Undertreatment of medical inpatients with narcotic analgesics. Annals of Internal Medicine, 78, 173–181.Google Scholar
Matheny, S.C. (2001). Clinical dilemmas in palliative care for HIV infection. Journal of the Royal Society of Medicine, 94, 449–451.Google Scholar
Maull, F.W. (1998). Issues in prison hospice: Toward a model for the delivery of hospice care in a correctional setting. The Hospice Journal, 13, 57–82.Google Scholar
Morrison, R.S., Wallenstein, S., Natale, & D.K., et al. (2000). “We don't carry that”—Failure of pharmacies in predominantly nonwhite neighborhoods to stock opioid analgesics. New England Journal of Medicine, 342, 1023–1026.Google Scholar
Morse, G.A., Calsyn, R.J., Miller, & J., et al. (1996). Outreach to homeless mentally ill people: Conceptual and clinical considerations. Community Mental Health Journal, 32, 261–274.Google Scholar
Moss, V. (1990). Palliative care in advanced HIV disease: Presentation, problems and palliation. AIDS, 4, S235–S242.Google Scholar
O'Neill, J.F., Marconi, K., Surapruik, & A., et al. (2000). Improving HIV/AIDS services through palliative care: An HRSA perspective. Health Resources and Services Administration. Journal of Urban Health, 77, 244–254.Google Scholar
O'Neill, J. & Marconi, K. (2001). Access to palliative care in the USA: Why emphasize vulnerable populations? Journal of the Royal Society of Medicine, 94, 452–454.Google Scholar
New York City Department of Health and Mental Hygiene, HIV Epidemiology Program (January, 1999, 2004).
Portenoy, R.K., Foley, K.M., & Inturrisi, C.E. (1992). Acute and chronic pain. In Substance Abuse, J. Lowinson, P. Ruiz, & R. Millman (eds.). Baltimore: Williams and Wilkins.
Rahimian, A. & Pach, A. (1999). Stories of AIDS outreach and case management: Context and activities. Substance Use and Misuse, 341, 1991–2014.Google Scholar
Robinson, L. & Stacy, R. (1994). Community palliative care in the community: Setting practice guidelines for primary care. British Journal of General Practice, 44, 461–464.Google Scholar
Rodney, M., Clasen, C., Goldman, & G., et al. (1998). Three evaluation methods of a community health advocate program. Journal of Community Health, 23, 371–381.Google Scholar
Ryan, R. (1971). Blaming the Victim. New York: Vintage Books.
Sambamoorthi, U., Walkup, J., McSpiritt, & E., et al. (2000). Racial differences in end-of-life care for patients with AIDS. AIDS Public Policy Journal, 15, 136–148.Google Scholar
Schwartz, C.E. & Selwyn, P.A. (2001). HIV psychiatry: Epidemiology, depression diagnostic issues and treatment choice, drug interactions. NeuroAIDS, 4, 1–7.Google Scholar
Selwyn, P.A. & Arnold, R. (1998). From fate to tragedy: The changing meanings of life, death, and AIDS. Annals of Internal Medicine, 129, 899–902.Google Scholar
Selwyn, P.A., Goulet, J.L., Molde, & S., et al. (2000). HIV as a chronic disease: Implications for long-term care at an AIDS-dedicated skilled nursing facility. Journal of Urban Health, 77, 187–203.Google Scholar
Selwyn, P.A. & Rivard, M. (2003a). Overview of clinical issues. In A Clinical Guide to Supportive and Palliative Care for HIV/AIDS, J.F. O'Neill, P.A. Selwyn, & H. Schietinger (eds.), p. 7. Washington, DC: U.S. Department of Health and Human Services.
Selwyn, P.A. & Rivard, M. (2003b). Palliative care for AIDS: Challenges and opportunities in the era of highly active anti-retroviral therapy. Journal of Palliative Medicine, 6, 475–487.Google Scholar
Selwyn, P.A., Rivard, M., Kappell, & D., et al. (2003). Palliative care for AIDS at a large urban teaching hospital: Program description and preliminary outcomes. Journal of Palliative Medicine, 6, 461–474.Google Scholar
Shern, D.L., Tsemberis, S., Anthony, & W., et al. (2000). Serving street-dwelling individuals with psychiatric disabilities: Outcomes of a psychiatric rehabilitation clinical trial. American Journal of Public Health, 90, 1873–1878.Google Scholar
Volberding, P.A. (2003). HIV therapy in 2003: Consensus and controversy. AIDS, 17(suppl. 1), S4–S11.Google Scholar
Warrick, H., Wood, A.H., Meister, & J.S., et al. (1992). Evaluation of a peer health worker prenatal outreach and education program for Hispanic farmworker families. Journal of Community Health, 17, 13–26.Google Scholar
Williams, E., Berrien, V., & Trubey, P. (1997). The family with AIDS: Multiple challenges for caregivers. American Journal of Hospice and Palliative Care, 14, 293–299.Google Scholar