Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-11T05:23:19.742Z Has data issue: false hasContentIssue false
  • English
  • Français

Methods for overcoming barriers in palliative care for ethnic/racial minorities: a systematic review

Published online by Cambridge University Press:  26 July 2019

Donna P. Mayeda Open the ORCID record for Donna P. Mayeda [Opens in a new window]  and
Katherine T. Ward
Donna P. Mayeda
Affiliation:
Harbor-UCLA Medical Center, 1000 W Carson St., Torrance, CA 90502
Katherine T. Ward*
Affiliation:
Harbor-UCLA Medical Center, 1000 W Carson St., Torrance, CA 90502 David Gaffen School of Medicine at UCLA, Los Angeles, CA 90095
*
Author for correspondence: Katherine T. Ward, M.D. Harbor-UCLA Medical Center, 1000 W Carson St., Box #459, Torrance, CA 90502. donnapmayeda@gmail.com
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

Ethnic/racial minority groups are less likely to discuss issues involving end-of-life treatment preferences and utilize palliative care or hospice services. Some barriers may be differences in language, religion, lower levels of health literacy, or less access to healthcare services and information. The purpose of this article is to conduct a systematic review on interventional studies that investigated methods to overcome the barriers faced by ethnic/racial minorities when accessing end-of-life services, including completing advanced directives, accepting palliative care, and enrolling in hospice.

Methods

Literature searches using four standard scientific search engines were conducted to retrieve articles detailing original research in an interventional trial design. All studies were conducted in an outpatient setting, including primary care visits, home visits, and dialysis centers. Target populations were those identified from ethnic or racial minorities.

Results

Nine articles were selected to be included in the final review. All were full-text English language articles, with target populations including African Americans, Hispanic or Latinos, and Asian or Pacific Islanders. Measured outcomes involved level of comfort in discussing and knowledge of palliative care services, desire for aggressive care at the end-of-life, completion of advance directives, and rate of enrollment in hospice.

Significance of Results

Three main avenues of interventions included methods to enhance patient education, increase access to healthcare, or improve communication to establish better rapport with target population. Studies indicate that traditional delivery of healthcare services may be insufficient to recruit patients from ethnic/racial minorities, and outcomes can be improved by implementing tailored interventions to overcome barriers.

Keywords

minoritypalliative carehospiceend-of-lifebarriers to palliative care
Type
Review Article
Information
Palliative & Supportive Care , Volume 17 , Issue 6 , December 2019 , pp. 697 - 706
Copyright
Copyright © Cambridge University Press 2019 

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

Allen, RS, Allen, JY, Hilgeman, MM and DeCoster, J (2008) End-of-life decision-making, decisional conflict, and enhanced information: race effects. Journal of the American Geriatrics Society 56(10), 1904–1909. https://doi.org/10.1111/j.1532-5415.2008.01929.xGoogle Scholar
Baicker, K, Chandra, A, Skinner, JS and Wennberg, JE (2004) Who you are and where you live: how race and geography affect the treatment of medicare beneficiaries. Health affairs (Project Hope), Suppl Variation, VAR33-VAR44.Google Scholar
Balboni, TA, Balboni, M, Enzinger, AC, Gallivan, K, Paulk, ME, Wright, A, et al. (2013) Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end-of-life. JAMA Internal Medicine 173(12), 1109–1117. http://dx.doi.org/10.1001/jamainternmed.2013.903Google Scholar
Balbon, TA, Vanderwerker, LC, Block, SD, Paulk, ME, Lathan, CS, Peteet, JR and Prigerson, HG (2007) Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Journal of Clinical Oncology 25(5), 555–560.Google Scholar
Barrett, RK (2005) Dialogues in diversity: an invited series of papers, advance directives, DNRs, and end-of-life care for African Americans. Omega: Journal of Death & Dying 52(3), 249–261.Google Scholar
Born, W, Greiner, KA, Sylvia, E, Butler, J and Ahluwalia, JS (2004) Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. Journal of Palliative Medicine 7(2), 247–256. https://doi.org/10.1089/109662104773709369Google Scholar
Borum, ML, Lynn, J and Zhong, Z (2000) The effects of patient race on outcomes in seriously ill patients in SUPPORT: an overview of economic impact, medical intervention, and end-of-life decisions. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of the American Geriatrics Society 48(5 Suppl), S194–S198.Google Scholar
Braun, KL, Karel, H and Zir, A (2006) Family response to end-of-life education: differences by ethnicity and stage of caregiving. American Journal of Hospice & Palliative Medicine 23(4), 269–276.Google Scholar
Carr, D (2011) Racial differences in end-of-life planning: why don't Blacks and Latinos prepare for the inevitable? Omega 63(1), 1–20.Google Scholar
Colón, M and Lyke, J (2003) Comparison of hospice use and demographics among European Americans, African Americans, and Latinos. The American Journal of Hospice & Palliative Care 20(3), 182–190.Google Scholar
Institute of Medicine (2015) Dying in America: improving quality and honoring individual preferences near the end-of-life. Washington, DC: The National Academies Press. https://doi.org/10.17226/18748.Google Scholar
Crawley, L. M. (2005) Racial, cultural, and ethnic factors influencing end-of-life care. Journal of Palliative Medicine, 8, S-58 51p.Google Scholar
Downs, SH and Black, N (1998) The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. Journal of Epidemiology and Community Health 52(6), 377–384.Google Scholar
Eunjeong, K and Jaehoon, L (2014) End-of-life treatment preference among low-income older adults: a race/ethnicity comparison study. Journal of Health Care for the Poor and Underserved 25(3), 1021–1033. https://doi.org/10.1353/hpu.2014.0129Google Scholar
Fernandes, R, Braun, KL, Ozawa, J, Compton, M, Guzman, C and Somogyi-Zalud, E (2010) Home-based palliative care services for underserved populations. Journal of Palliative Medicine 13(4), 413–419. https://doi.org/10.1089/jpm.2009.0216Google Scholar
Fischer, SM, Cervantes, L, Fink, RM and Kutner, JS (2015) Apoyo con Carino: a pilot randomized controlled trial of a patient navigator intervention to improve palliative care outcomes for Latinos with serious illness. Journal of Pain and Symptom Management 49(4), 657–665. https://doi.org/10.1016/j.jpainsymman.2014.08.011Google Scholar
Fosler, L, Staffileno, BA, Fogg, L and O'Mahony, S (2015) Cultural differences in discussion of do-not-resuscitate status and hospice. Journal of Hospice and Palliative Nursing 17(2), 128–132 125p. https://doi.org/10.1097/NJH.0000000000000135Google Scholar
Frank, G, Blackhall, LJ, Michel, V, Murphy, ST, Azen, SP and Park, K (1998) A discourse of relationships in bioethics: patient autonomy and end-of-life decision making among elderly Korean Americans. Medical Anthropology Quarterly 12(4), 403–423.Google Scholar
Heyman, JC and Gutheil, IA (2010) Older Latinos' attitudes toward and comfort with end-of-life planning. Health and Social Work 35(1), 17–26.Google Scholar
Jang, Y, Chiriboga, D, Allen, JY, Kwak, J and Haley, WE (2010) Willingness of older Korean-American adults to use hospice. Journal of the American Geriatrics Society 58(2), 352–356. http://dx.doi.org/10.1111/j.1532-5415.2009.02684.xGoogle Scholar
Kagawa-Singer, M and Blackhall, LJ (2001) Negotiating cross-cultural issues at the end-of-life: “You got to go where he lives”. JAMA 286(23), 2993–3001. http://dx.doi.org/10.1001/jama.286.23.2993Google Scholar
Kapo, J, MacMoran, H and Casarett, D (2005) “Lost to follow-up”: ethnic disparities in continuity of hospice care at the end-of-life. Journal of Palliative Medicine 8(3), 603–608.Google Scholar
Kemp, C (2001) Culture and the end-of-life. Hispanic cultures (focus on Mexican Americans). Journal of Hospice and Palliative Nursing 3(1), 29–33.Google Scholar
Koffman, J, Morgan, M, Edmonds, P, Speck, P and Higginson, IJ (2008) “I know he controls cancer”: the meanings of religion among Black Caribbean and White British patients with advanced cancer. Social science & medicine (1982) 67(5), 780–789. http://dx.doi.org/10.1016/j.socscimed.2008.05.004Google Scholar
Kreling, B, Selsky, C, Perret-Gentil, M, Huerta, EE, Mandelblatt, JS and Latin American Cancer Research, C (2010) 'The worst thing about hospice is that they talk about death': contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers. Palliative Medicine 24(4), 427–434. http://dx.doi.org/10.1177/0269216310366605Google Scholar
Laguna, J, Enguídanos, S, Siciliano, M and Coulourides-Kogan, A (2012) Racial/ethnic minority access to end-of-life care: a conceptual framework. Home Health Care Services Quarterly 31(1), 60–83 24p. https://doi.org/10.1080/01621424.2011.641922Google Scholar
Loggers, ET, Maciejewski, PK, Jimenez, R, Nilsson, M, Paulk, E, Stieglitz, H and Prigerson, HG (2013) Predictors of intensive end-of-life and hospice care in Latino and white advanced cancer patients. Journal of Palliative Medicine 16(10), 1249–1254. http://dx.doi.org/10.1089/jpm.2013.0164Google Scholar
Loggers, ET, Maciejewski, PK, Paulk, E, DeSanto-Madeya, S, Nilsson, M, Viswanath, K, et al. (2009) Racial differences in predictors of intensive end-of-life care in patients with advanced cancer. Journal of Clinical Oncology 27(33), 5559–5564. http://dx.doi.org/10.1200/JCO.2009.22.4733Google Scholar
Long, AC, Engelberg, RA, Downey, L, Kross, EK, Reinke, LF, Cecere Feemster, L, et al. (2014) Race, income, and education: associations with patient and family ratings of end-of-life care and communication provided by physicians-in-training. Journal of Palliative Medicine 17(4), 435–447. https://doi.org/10.1089/jpm.2013.0214Google Scholar
Lynn, J, Teno, JM, Phillips, RS, Wu, AW, Desbiens, N, Harrold, J, et al. (1997) Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Annals of Internal Medicine 126(2), 97–106.Google Scholar
O'Malley, AS.Forrest, CB, Politzer, RM, Wulu, JT and Shi, L (2005) Health center trends, 1994–2001: what do they portend for the federal growth initiative? Health Affairs 24(2), 465–472. https://doi.org/10.1377/hlthaff.24.2.465Google Scholar
Organization NHPC (2015) NHPCO's Facts and Figures. Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization.Google Scholar
Perry, E, Swartz, J, Brown, S, Smith, D, Kelly, G and Swartz, R (2005) Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients. American Journal of Kidney Diseases 46(1), 111–119.Google Scholar
Phipps, E, True, G, Harris, D, Chong, U, Tester, W, Chavin, S.I and Braitman, LE (2003) Approaching the end-of-life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. Journal of Clinical Oncology 21(3), 549–554.Google Scholar
Robert Wood Johnson Foundation LAC (2002) Means to a Better End: A Report on Dying in America Today. Robert Wood Johnson Foundation. http://hdl.handle.net/10244/469Google Scholar
Schillinger, D, Bindman, A, Wang, F, Stewart, A and Piette, J (2004) Functional health literacy and the quality of physician-patient communication among diabetes patients. Patient Education and Counseling 52(3), 315–323. https://doi.org/10.1016/s0738-3991(03)00107-1Google Scholar
Searight, HR and Gafford, J (2005) Cultural diversity at the end-of-life: issues and guidelines for family physicians. American Family Physician 71(3), 515–615.Google Scholar
Shavers, VL, Lynch, CF and Burmeister, LF (2000) Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. Journal of the National Medical Association 92(12), 563–572.Google Scholar
Silva, MD, Genoff, M, Zaballa, A, Jewell, S, Stabler, S, Gany, FM and Diamond, LC (2016) Interpreting at the end-of-life: a systematic review of the impact of interpreters on the delivery of palliative care services to cancer patients with limited English proficiency. Journal of Pain and Symptom Management 51(3), 569–580. https://doi.org/10.1016/j.jpainsymman.2015.10.011Google Scholar
Siriwardena, AN and Clark, DH (2004) End-of-life care for ethnic minority groups. Clinical Cornerstone 6(1), 43–48.Google Scholar
Song, MK, Donovan, HS, Piraino, BM, Choi, J, Bernardini, J, Verosky, D and Ward, SE (2010) Effects of an intervention to improve communication about end-of-life care among African Americans with chronic kidney disease. Applied Nursing Research 23(2), 65–72. https://doi.org/10.1016/j.apnr.2008.05.002Google Scholar
Song, MK, Ward, SE, Happ, MB, Piraino, B, Donovan, HS, Shields, AM and Connolly, MC (2009) Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end-of-life. Research in Nursing and Health 32(3), 260–273. https://doi.org/10.1002/nur.20320Google Scholar
The SUPPORT Principal Investigators (1995) A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 274(20), 1591–1598.Google Scholar
Thomas, BA, Rodriguez, RA, Boyko, EJ, Robinson-Cohen, C, Fitzpatrick, AL and O'Hare, AM (2013) Geographic variation in black-white differences in end-of-life care for patients with ESRD. Clinical journal of the American Society of Nephrology 8(7), 1171–1178. http://dx.doi.org/10.2215/CJN.06780712Google Scholar
True, G, Phipps, EJ, Braitman, LE, Harralson, T, Harris, D and Tester, W (2005) Treatment preferences and advance care planning at end-of-life: the role of ethnicity and spiritual coping in cancer patients. Annals of Behavioral Medicine 30(2), 174–179. https://doi.org/10.1207/s15324796abm3002_10Google Scholar
Volandes, A. E., Ariza, M., Abbo, E. D., & Paasche-Orlow, M. (2008). Overcoming educational barriers for advance care planning in Latinos with video images. Journal of Palliative Medicine, 11(5), 700–706 707p.Google Scholar
Weitzen, S, Teno, JM, Fennell, M and Mor, V (2003) Factors associated with site of death: a national study of where people die. Medical Care 41(2), 323–335. https://doi.org/10.1097/01.mlr.0000044913.37084.27Google Scholar
Welch, LC, Teno, JM and Mor, V (2005) End-of-life care in black and white: race matters for medical care of dying patients and their families. Journal of the American Geriatrics Society 53(7), 1145–1153.Google Scholar
Winter, L, Dennis, MP and Parker, B (2008) Religiosity and preferences for life-prolonging medical treatments in African-American and White elders: a mediation study. Omega: Journal of Death and Dying 56(3), 273–288. http://dx.doi.org/10.2190/OM.56.3.dGoogle Scholar