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Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making

Journal of Perinatology volume 41, pages 396–403 (2021)Cite this article

Subjects

Abstract

Objective

To qualitatively explore perceptions of pain/suffering, disability, and coping by race among pregnant women facing the threat of a periviable delivery (22 0/7–24 6/7 weeks).

Study design

Interviews were conducted in-hospital prior to delivery. Transcripts were coded verbatim and responses were stratified by race (white vs non-white). Conventional content analysis was conducted using NVivo 12.

Results

We recruited 30 women (50% white, 50% non-white). Most women expressed love and acceptance of their babies and described pain as a “means to an end.” Non-white women focused almost exclusively on immediate survival and perseverance, while white women expressed concerns about quality of life beyond the NICU. The majority of non-white women were unable to recall any discussions with their doctors about their baby’s comfort, pain, or suffering.

Conclusions

These findings may suggest that culturally tailored approaches to counseling and decision-support may be beneficial for patients from marginalized or minoritized groups.

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Fig. 1: Qualitative perspectives on death, disability, pain and suffering, by race.

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References

  1. Tucker Edmonds B, Fager C, Srinivas S, Lorch S. Racial and ethnic differences in use of intubation for periviable neonates. Pediatrics. 2011;127:e1120–7.

    Article  PubMed  Google Scholar 

  2. Arzuaga B, Adam H, Ahmad M, Padela A. Attitudes towards the resuscitation of periviable infants: a national survey of American Muslim physicians. Acta Paediatr. 2016;105:260–7.

    Article  PubMed  Google Scholar 

  3. Arzuaga BH, Meadow W. National variability in neonatal resuscitation practices at the limit of viability. Am J Perinatol. 2014;31:521–8.

    PubMed  Google Scholar 

  4. Kunkel MD, Downs SM, Tucker Edmonds B. Influence of maternal factors in neonatologists’ counseling for periviable pregnancies. Am J Perinatol. 2017;34:787–94.

    Article  PubMed  Google Scholar 

  5. Tucker Edmonds B, Krasny S, Srinivas S, Shea J. Obstetric decision-making and counseling at the limits of viability. Am J Obstet Gynecol. 2012;206:248.e1–5.

    Article  Google Scholar 

  6. Tucker Edmonds B, McKenzie F, Fadel WF, Matthias MS, Salyers MP, Barnato AE, et al. Using simulation to assess the influence of race and insurer on shared decision making in periviable counseling. Simul Healthc. 2014;9:353–9.

    Article  PubMed  Google Scholar 

  7. Mebane EW, Oman RF, Kroonen LT, Goldstein MK. 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;47:579–91.

    Article  CAS  PubMed  Google Scholar 

  8. Cohen LL. Racial/ethnic disparities in hospice care: a systematic review. J Palliat Med. 2008;11:763–8.

    Article  PubMed  Google Scholar 

  9. Smith AK, McCarthy EP, Paulk E, Balboni TA, Maciejewski PK, Block SD, et al. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol. 2008;26:4131–7.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Carrion IV. When do Latinos use hospice services? Studying the utilization of hospice services by Hispanics/Latinos. Soc Work Health Care. 2010;49:197–210.

    Article  PubMed  Google Scholar 

  11. Colon M. Hospice and Latinos: a review of the literature. J Soc Work End Life Palliat Care. 2005;1:27–43.

    Article  PubMed  Google Scholar 

  12. Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004;7:247–56.

    Article  PubMed  Google Scholar 

  13. Johnson KS, Kuchibhatla M, Tanis D, Tulsky JA. Racial differences in hospice revocation to pursue aggressive care. Arch Intern Med. 2008;168:218–24.

    Article  PubMed  Google Scholar 

  14. Johnson KS, Kuchibhatla M, Tulsky JA, Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatrics Soc. 2008;56:1953–8.

    Article  Google Scholar 

  15. Nath SB, Hirschman KB, Lewis B, Strumpf NE. A place called LIFE: exploring the advance care planning of African-American PACE enrollees. Soc Work Health Care. 2008;47:277–92.

    Article  PubMed  Google Scholar 

  16. Smith AK, Earle CC, McCarthy EP. Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc. 2009;57:153–8.

    Article  PubMed  Google Scholar 

  17. Reese DJ, Ahern RE, Nair S, O’Farie JD, Warren C. Hospice access and use by African Americans: addressing cultural and institutional. Soc Work. 1999;44:549.

    Article  CAS  PubMed  Google Scholar 

  18. Givens JL, Tjia J, Zhou C, Emanuel E, Ash AS. Racial and ethnic differences in hospice use among patients with heart failure. Arch Intern Med. 2010;170:427–32.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Knapp CA, Shenkman EA, Marcu MI, Madden VL, Terza JV. Pediatric palliative care: describing hospice users and identifying factors that affect hospice expenditures. J Palliat Med. 2009;12:223–9.

    Article  PubMed  Google Scholar 

  20. Moseley KL, Church A, Hempel B, Yuan H, Goold SD, Freed GL. End-of-life choices for African-American and white infants in a neonatal intensive-care unit: a pilot study. J Natl Med Assoc. 2004;96:933–7.

    PubMed  PubMed Central  Google Scholar 

  21. Volandes AE, Paasche-Orlow M, Gillick MR, Cook EF, Shaykevich S, Abbo ED, et al. Health literacy not race predicts end-of-life care preferences. J Palliat Med. 2008;11:754–62.

    Article  PubMed  Google Scholar 

  22. Bullock K. Promoting advance directives among African Americans: a faith-based model. J Palliat Med. 2006;9:183–95.

    Article  PubMed  Google Scholar 

  23. Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med. 1999;48:1779–89.

    Article  CAS  PubMed  Google Scholar 

  24. Tucker Edmonds B, Hoffman SM, Laitano T, Bhamidipalli SS, Jeffries E, et al. Paediatr Perinat Epidemiol. 2019. https://doi.org/10.1111/ppe.12590. [Epub ahead of print].

  25. Tucker Edmonds B, Laitano T, Hoffman SM, Jeffries E, Fadel W, Bhamidipalli SS, et al. The impact of decision quality on mental health following periviable delivery. J Perinatol. 2019;39:1595–601.

    Article  PubMed  Google Scholar 

  26. Guest G, Bunce A, Johnson L. How many interviews are enough?: An experiment with data saturation and variability. Field Methods. 2006;18:59–82.

    Article  Google Scholar 

  27. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–88.

    Article  PubMed  Google Scholar 

  28. Ayres L, Kavanaugh K, Knafl KA. Within-case and across-case approaches to qualitative data analysis. Qual Health Res. 2003;13:871–83.

    Article  PubMed  Google Scholar 

  29. Rysavy MA, Li L, Bell EF, Das A, Hintz SR, Stoll BJ, et al. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med. 2015;372:1801–11.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Tucker Edmonds B, McKenzie F, Farrow V, Raglan G, Schulkin J. A national survey of obstetricians’ attitudes toward and practice of periviable intervention. J Perinatol. 2015;35:338–43.

    Article  CAS  PubMed  Google Scholar 

  31. Tucker Edmonds B, McKenzie F, Robinson BK. Maternal-Fetal Medicine physicians’ practice patterns for 22-week delivery management. J Matern Fetal Neonatal. 2016;29:1829–33.

    Google Scholar 

  32. Cummings J. Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics.2015;136:588–95.

    Article  PubMed  Google Scholar 

  33. McKenzie F, Robinson BK, Tucker Edmonds B. Do maternal characteristics influence maternal-fetal medicine physicians’ willingness to intervene when managing periviable deliveries? J Perinatol. 2016;36:522–8.

    Article  CAS  PubMed  Google Scholar 

  34. Lemyre B, Moore G. Counselling and management for anticipated extremely preterm birth. Paediatr Child Health. 2017;22:334–41.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics. 2009;123:1509–15.

    Article  PubMed  Google Scholar 

  36. Smith AK, Davis RB, Krakauer EL. Differences in the quality of the patient-physician relationship among terminally ill African-American and white patients: impact on advance care planning and treatment preferences. J Gen Intern Med. 2007;22:1579–82.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Ache KA, Shannon RP, Heckman MG, Diehl NN, Willis FB. A preliminary study comparing attitudes toward hospice referral between African American and White American primary care physicians. J Palliat Med. 2011;14:542–7.

    Article  PubMed  Google Scholar 

  38. Barnato AE, Angus DC. Value and role of intensive care unit outcome prediction models in end-of-life decision making. Crit Care Clin. 2004;20:345–62.

    Article  PubMed  Google Scholar 

  39. Cook D, Rocker G, Marshall J, Sjokvist P, Dodek P, Griffith L, et al. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Engl J Med. 2003;349:1123–32.

    Article  CAS  PubMed  Google Scholar 

  40. Frost DW, Cook DJ, Heyland DK, Fowler RA. Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit Care Med. 2011;39:1174–89.

    Article  PubMed  Google Scholar 

  41. Seale C. The role of doctors’ religious faith and ethnicity in taking ethically controversial decisions during end-of-life care. J Med Ethics. 2010;36:677–82.

    Article  PubMed  Google Scholar 

  42. Institute of Medicine (US) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. In: Smedley BD, Stith AY, Nelson AR, editors. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academies Press (US) Copyright 2002 by the National Academy of Sciences; 2003.

  43. Bullock K. The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care. 2011;7:83–98.

    Article  PubMed  Google Scholar 

  44. Hopp FP, Duffy SA. Racial variations in end-of-life care. J Am Geriatr Soc. 2000;48:658–63.

    Article  CAS  PubMed  Google Scholar 

  45. Tucker Edmonds B. Moving beyond the impasse: discussing death and dying with African American patients. Obstet Gynecol. 2011;117:383–7.

    Article  PubMed  Google Scholar 

  46. Gamble VN. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health. 1997;87:1773–8.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  47. Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc. 2005;53:711–9.

    Article  PubMed  Google Scholar 

  48. Holloway KFC. Passed on: African American mourning stories: a memorial Durham, NC: Duke University Press; 2003.

    Google Scholar 

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Funding

This study was funded by the National Institutes of Health R21 Exploratory/Developmental Research Grant (HD089032-01).

Author information

Authors and Affiliations

  1. Department of Obstetrics & Gynecology, Indiana University School of Medicine, Indianapolis, IN, USA

    Brownsyne Tucker Edmonds, Shelley M. Hoffman, Tatiana Laitano, Erin Jeffries & Shannon Jager

  2. Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Karen Kavanaugh

  3. College of Nursing, University of Illinois at Chicago, Chicago, IL, USA

    Karen Kavanaugh

Authors
  1. Brownsyne Tucker Edmonds
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  2. Shelley M. Hoffman
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  3. Tatiana Laitano
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  4. Erin Jeffries
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  5. Shannon Jager
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  6. Karen Kavanaugh
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Contributions

BTE and KK contributed to study concept, design, analysis, and writing. KK served as a mentor to BTE. SMH, TL, and EJ contributed to recruitment, data management, analysis, and writing. SJ contributed to analysis and writing.

Corresponding author

Correspondence to Brownsyne Tucker Edmonds.

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The authors declare that they have no conflict of interest.

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Tucker Edmonds, B., Hoffman, S.M., Laitano, T. et al. Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making. J Perinatol 41, 396–403 (2021). https://doi.org/10.1038/s41372-020-0739-5

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