Skip to main content
NCBI home page
Journal of the National Medical Association logoLink to Journal of the National Medical Association
. 2004 Jul;96(7):933–937.

End-of-life choices for African-American and white infants in a neonatal intensive-care unit: a pilot study.

Kathryn L Moseley 1, Annamaria Church 1, Bridget Hempel 1, Harry Yuan 1, Susan Door Goold 1, Gary L Freed 1
PMCID: PMC2568418  PMID: 15253324

Abstract

BACKGROUND: African-American adults are more likely than white adults to desire the continuation of life-sustaining medical treatment (LSMT) at the end of life. No studies have examined racial differences in parental end-of-life decisions for neonates. OBJECTIVE: To collect preliminary data to determine whether differences exist in the choices made by parents of African-American and white infants when a physician has recommended withholding or withdrawing LSMT from their infant to develop hypotheses for future work. DESIGN/METHODS: A retrospective chart review of African-American and white infants who died in an urban neonatal intensive care unit (NICU) over a two-year period. Charts were abstracted for demographics, cause of death, and documentation of meetings where the physician recommended withholding or withdrawing LSMT. RESULTS: Thirty-eight infant charts met study criteria (58% African-American, 42% white). Documentation of physician recommendations to limit LSMT was present in 61% of charts. Approached families of white infants agreed to limit LSMT 80% of the time compared to 62% of the families of African-American infants. CONCLUSIONS: In this pilot study, parents of African-American and white infants appeared to make different end-of-life choices for their children. A larger study is needed to confirm these findings and further explore contributing factors such as mistrust, religiosity, and perceived discrimination.

Full text

PDF
933

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Ashton Carol M., Haidet Paul, Paterniti Debora A., Collins Tracie C., Gordon Howard S., O'Malley Kimberly, Petersen Laura A., Sharf Barbara F., Suarez-Almazor Maria E., Wray Nelda P. Racial and ethnic disparities in the use of health services: bias, preferences, or poor communication? J Gen Intern Med. 2003 Feb;18(2):146–152. doi: 10.1046/j.1525-1497.2003.20532.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Blackhall L. J., Frank G., Murphy S. T., Michel V., Palmer J. M., Azen S. P. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med. 1999 Jun;48(12):1779–1789. doi: 10.1016/s0277-9536(99)00077-5. [DOI] [PubMed] [Google Scholar]
  3. Caralis P. V., Davis B., Wright K., Marcial E. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics. 1993 Summer;4(2):155–165. [PubMed] [Google Scholar]
  4. Cooper Lisa A., Gonzales Junius J., Gallo Joseph J., Rost Kathryn M., Meredith Lisa S., Rubenstein Lisa V., Wang Nae-Yuh, Ford Daniel E. The acceptability of treatment for depression among African-American, Hispanic, and white primary care patients. Med Care. 2003 Apr;41(4):479–489. doi: 10.1097/01.MLR.0000053228.58042.E4. [DOI] [PubMed] [Google Scholar]
  5. Garrett J. M., Harris R. P., Norburn J. K., Patrick D. L., Danis M. Life-sustaining treatments during terminal illness: who wants what? J Gen Intern Med. 1993 Jul;8(7):361–368. doi: 10.1007/BF02600073. [DOI] [PubMed] [Google Scholar]
  6. Hauser J. M., Kleefield S. F., Brennan T. A., Fischbach R. L. Minority populations and advance directives: insights from a focus group methodology. Camb Q Healthc Ethics. 1997 Winter;6(1):58–71. doi: 10.1017/s0963180100007611. [DOI] [PubMed] [Google Scholar]
  7. Hofmann J. C., Wenger N. S., Davis R. B., Teno J., Connors A. F., Jr, Desbiens N., Lynn J., Phillips R. S. Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Ann Intern Med. 1997 Jul 1;127(1):1–12. doi: 10.7326/0003-4819-127-1-199707010-00001. [DOI] [PubMed] [Google Scholar]
  8. Hopp F. P., Duffy S. A. Racial variations in end-of-life care. J Am Geriatr Soc. 2000 Jun;48(6):658–663. doi: 10.1111/j.1532-5415.2000.tb04724.x. [DOI] [PubMed] [Google Scholar]
  9. Hornung C. A., Eleazer G. P., Strothers H. S., 3rd, Wieland G. D., Eng C., McCann R., Sapir M. Ethnicity and decision-makers in a group of frail older people. J Am Geriatr Soc. 1998 Mar;46(3):280–286. doi: 10.1111/j.1532-5415.1998.tb01038.x. [DOI] [PubMed] [Google Scholar]
  10. Kagawa-Singer M., Blackhall L. J. Negotiating cross-cultural issues at the end of life: "You got to go where he lives". JAMA. 2001 Dec 19;286(23):2993–3001. doi: 10.1001/jama.286.23.2993. [DOI] [PubMed] [Google Scholar]
  11. Krakauer Eric L., Crenner Christopher, Fox Ken. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc. 2002 Jan;50(1):182–190. doi: 10.1046/j.1532-5415.2002.50027.x. [DOI] [PubMed] [Google Scholar]
  12. LaVeist Thomas A., Carroll Tamyra. Race of physician and satisfaction with care among African-American patients. J Natl Med Assoc. 2002 Nov;94(11):937–943. [PMC free article] [PubMed] [Google Scholar]
  13. McKinley E. D., Garrett J. M., Evans A. T., Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996 Nov;11(11):651–656. doi: 10.1007/BF02600155. [DOI] [PubMed] [Google Scholar]
  14. Mebane E. W., Oman R. F., Kroonen L. T., Goldstein M. K. The influence of physician race, age, and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making. J Am Geriatr Soc. 1999 May;47(5):579–591. doi: 10.1111/j.1532-5415.1999.tb02573.x. [DOI] [PubMed] [Google Scholar]
  15. Siminoff Laura A., Lawrence Renee H., Arnold Robert M. Comparison of black and white families' experiences and perceptions regarding organ donation requests. Crit Care Med. 2003 Jan;31(1):146–151. doi: 10.1097/00003246-200301000-00023. [DOI] [PubMed] [Google Scholar]
  16. Waters C. M. Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qual Health Res. 2001 May;11(3):385–398. doi: 10.1177/104973201129119172. [DOI] [PubMed] [Google Scholar]

Articles from Journal of the National Medical Association are provided here courtesy of National Medical Association

RESOURCES