The Good Death Among Black,Indigenous,and/or People of Color: Which Aspects of a Good Death Are Most Important?

Abstract

A good death is one where a patient’s preferences and wishes are fully respected. The purpose of this study was to determine which aspects of a good death are most important to Black/Indigenous, and/or people of color (BIPOC). Participants were recruited from Amazon Mechanical Turk, and then directed to complete a quantitative survey indicating the importance of each item on the Good Death Inventory. A logistic regression model was used to identify any differences in the importance of each item based on the racial background of the respondent. After accounting for other independent variables, the results showed that BIPOC were more likely to indicate that factors such as life completion, receiving all treatment possible, and religious/spiritual support were important aspects of a good death. Results indicate the need for culturally tailored tools that account for cultural differences in what constitutes a good death.

Keywords

good death BIPOC black indigenous people of color

Get full access to this article

View all access options for this article.

References

Amazon Mechanical Turk . (2022). https://www.mturk.com/

Ando

Somchit

Miyashita

Jamjan

(2016). The perception for good death of community dwelling Japanese and Thailand respondents. Asian/Pacific Island Nursing Journal, 1(3), 91–96. https://doi.org/10.1016/j.jpainsymman.2017.08.010

Bazargan

Bazargan-Hejazi

(2021). Disparities in palliative and hospice care and completion of advance care planning and directives among non-hispanic blacks: A scoping review of recent literature. The American Journal Of Hospice & Palliative Care, 38(6), 688–718. https://doi.org/10.1177/1049909120966585

Boden

Zimmerman

Azevedo

K. J.

Ruzek

J. I.

Gala

Magid

H. S. A.

McLean

C. P.

(2021). Addressing the mental health impact of COVID-19 through population health. Clinical Psychology Review, 85, 102006. https://doi.org/10.1016/j.cpr.2021.102006

Canún

(2022). The powerful role of family in Hispanic culture [Unlike U.S. culture]. Homeschool Spanish Academy. https://www.spanish.academy/blog/the-powerful-role-of-family-in-hispanic-culture-unlike-u-s-culture/

Casler

Bickel

Hackett

(2013). Separate but equal? A comparison of participants and data gathered via amazon’s MTurk, social media, and face-to-face behavioral testing. Computers in Human Behavior, 29(6), 2156–2160. https://doi.org/10.1016/j.chb.2013.05.009

Choudry

Latif

Warburton

K. G.

(2018). An overview of the spiritual importances of end-of-life care among the five major faiths of the United Kingdom. Clinical Medicine (London, England), 18(1), 23–31. https://doi.org/10.7861/clinmedicine.18-1-23

Chua

(2019). How Asian cultures approach death. Kontinentalist. https://kontinentalist.com/stories/how-asian-cultures-approach-death

Cicirelli

V. G.

(2011). Religious and nonreligious spirituality in relation to death acceptance or rejection. Death Studies, 35(2), 124–146. https://doi.org/10.1080/07481187.2011.535383

10.

Coolen

P. R.

(2012). Cultural relevance in end-of-life care. EthnoMed.

11.

Diamant

(2019). Teens in the south more likely than other U.S. teens to experience religion in public school. Pew Research Center. https://www.pewresearch.org/fact-tank/2019/12/10/teens-in-the-south-more-likely-than-other-u-s-teens-to-experience-religion-in-public-school/

12.

Duke

Petersen

(2015). Perspectives of Asians living in Texas on pain management in the last days of life. International Journal of Palliative Nursing, 21(1), 24–34. https://doi.org/10.12968/ijpn.2015.21.1.24

13.

Ekore

R. I.

Lanre-Abass

(2016). African cultural concept of death and the idea of advance care directives. Indian Journal of Palliative Care, 22(4), 369–372. https://doi.org/10.4103/0973-1075.191741

14.

Frankenfeld

C. L.

Menon

Leslie

T. F.

(2020). Racial disparities in colorectal cancer time-to-treatment and survival time in relation to diagnosing hospital cancer-related diagnostic and treatment capabilities. Cancer Epidemiology, 65, 101684. https://doi.org/10.1016/j.canep.2020.101684

15.

Glasdam

(2022). The ‘good death’in mainland China-A scoping review. International Journal of Nursing Studies Advances, 4, 100069. https://doi.org/10.1016/j.ijnsa.2022.100069

16.

Guadagnolo

B. A.

Cina

Helbig

Molloy

Reiner

Cook

E. F.

Petereit

D. G.

(2009). Medical mistrust and less satisfaction with health care among native Americans presenting for cancer treatment. Journal of Health Care for the Poor and Underserved, 20(1), 210–226. https://doi.org/10.1353/hpu.0.0108

17.

Holland

J. M.

Neimeyer

R. A.

(2011). Separation and traumatic distress in prolonged grief: The role of cause of death and relationship to the deceased. Journal of Psychopathology and Behavioral Assessment, 33(2), 254–263. https://doi.org/10.1007/s10862-010-9214-5

18.

Hunt

K. A.

Gaba

Lavizzo-Mourey

(2005). Racial and ethnic disparities and perceptions of health care: Does health plan type matter? Health Services Research, 40(2), 551–576. https://doi.org/10.1111/j.1475-6773.2005.00372.x

19.

Johnson

Hayden

True

Simkin

Colbert

Thompson

Stewart

Martin

(2016). The impact of faith beliefs on perceptions of end-of-life care and decision making among african American church members. Journal of Palliative Medicine, 19(2), 143–148. https://doi.org/10.1089/jpm.2015.0238

20.

Johnson

K. S.

(2013). Racial and ethnic disparities in palliative care. Journal of Palliative Medicine, 16(11), 1329–1334. https://doi.org/10.1089/jpm.2013.9468

21.

Kees

Berry

Burton

Sheehan

(2017). An analysis of data quality: Professional panels, student subject pools, and Amazon’s Mechanical Turk. Journal of Advertising, 46(1), 141–155. https://doi.org/10.1080/00913367.2016.1269304

22.

Kennedy

(2016). The importance of patient dignity in care at the end of life. The Ulster Medical Journal, 85(1), 45–48.

23.

Kim

Keefe

R. H.

(2010). Barriers to healthcare among Asian Americans. Social Work in Public Health, 25(3-4), 286–295. https://doi.org/10.1080/19371910903240704

24.

Krikorian

Maldonado

Pastrana

(2020). Patient’s perspectives on the notion of a good death: A systematic review of the literature. Journal of Pain and Symptom Management, 59(1), 152–164. https://doi.org/10.1016/j.jpainsymman.2019.07.033

25.

Kupeli

Candy

Tamura-Rose

Schofield

Webber

Hicks

S. E.

Floyd

Vivat

Sampson

E. L.

Stone

Aspden

(2019). Tools measuring quality of death, dying, and care, completed after death: Systematic review of psychometric properties. The Patient, 12(2), 183–197. https://doi.org/10.1007/s40271-018-0328-2

26.

Lee

M. C.

Hinderer

K. A.

Alexander

C. S.

(2018). What matters most at the end-of-life for Chinese Americans? Gerontology & Geriatric Medicine, 4, 2333721418778195. https://doi.org/10.1177/2333721418778195

27.

Lee

S. K.

(2009). East asian attitudes toward death- A search for the ways to help east asian elderly dying in contemporary America. The Permanente Journal, 13(3), 55–60. https://doi.org/10.7812/TPP/08-068

28.

Lloyd

C. M.

Alvira-Hammond

Carlson

Logan

(2021). Family, economic, and geographic characteristics of Black families with children. https://www.childtrends.org/publications/family-economic-and-geographic-characteristics-of-black-families-with-children

29.

Meier

E. A.

Gallegos

J. V.

Thomas

L. P.

Depp

C. A.

Irwin

S. A.

Jeste

D. V.

(2016). Defining a good death (successful dying): Literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 24(4), 261–271. https://doi.org/10.1016/j.jagp.2016.01.135

30.

Mir

(2011). Care of the terminally ill from religious perspectives: Role of palliative and hospice care. The Journal of IMA, 43(3), 168–173. https://doi.org/10.5915/43-3-8734

31.

Miyashita

Morita

Sato

Hirai

Shima

Uchitomi

(2008a). Factors contributing to evaluation of a good death from the bereaved family member's perspective. Psycho-oncology, 17(6), 612–620. https://doi.org/10.1002/pon.1283

32.

Miyashita

Morita

Sato

Hirai

Shima

Uchitomi

(2008b). Good death inventory: A measure for evaluating good death from the bereaved family member's perspective. Journal of Pain and Symptom Management, 35(5), 486–498. https://doi.org/10.1016/j.jpainsymman.2007.07.009

33.

Nunez

E. R.

Villa

McFadden

Palmisciano

Lanini

O'Mahony

Curtis

J. R.

Levy

M. M.

Amass

(2021). Differences in family involvement in the bedside care of patients in the ICU based on self-identified race. Critical Care Explorations, 3(3), Article e0365. https://doi.org/10.1097/CCE.0000000000000365

34.

Orlovic

Smith

Mossialos

(2018). Racial and ethnic differences in end-of-life care in the United States: Evidence from the health and retirement study (HRS). SSM - Population Health, 7, 100331. https://doi.org/10.1016/j.ssmph.2018.100331

35.

Papa

Lancaster

N. G.

Kahler

(2014). Commonalities in grief responding across bereavement and non-bereavement losses. Journal of Affective Disorders, 161, 136–143. https://doi.org/10.1016/j.jad.2014.03.018

36.

Peer

Brandimarte

Samat

Acquisti

(2017). Beyond the Turk: Alternative platforms for crowdsourcing behavioral research. Journal of Experimental Social Psychology, 70, 153–163. https://doi.org/10.1016/j.jesp.2017.01.006

37.

Pepinsky

T. B.

(2018). A note on listwise deletion versus multiple imputation. Political Analysis, 26(4), 480–488. https://doi.org/10.1017/pan.2018.18

38.

Pew Research Center . (2012). The rise of Asian-Americans. https://www.pewresearch.org/social-trends/2012/06/19/chapter-5-family-and-personal-values/

39.

Pew Research Center . (2016). Turkers in this canvassing: Young, well-educated and frequent users. https://www.pewresearch.org/internet/2016/07/11/turkers-in-this-canvassing-young-well-educated-and-frequent-users/

40.

Propst

(2021, November 22). Culture and death: Native American heritage. Alive Hospice. https://www.alivehospice.org/news-events/culture-and-death-native-american-heritage

41.

Restoring hope for mental health and well-being Act

. (2022). 117th Congress. Congress.gov website: https://www.congress.gov/bill/117th-congress/house-bill/7666

42.

Sanderson

Miller-Lewis

Rawlings

Parker

Tieman

(2019). “I want to die in my sleep”-how people think about death, choice, and control: Findings from a massive open online course. Annals of Palliative Medicine, 8(4), 411–419. https://doi.org/10.21037/apm.2019.03.07

43.

Schneider

E. C.

Sarnak

D. O.

Squires

Shah

Doty

(2017). Mirror, mirror 2017: International comparison reflects flaws and opportunities for better U.S. Health care. https://interactives.commonwealthfund.org/2017/july/mirror-mirror

44.

Schreiber-Gregory

(2018). Logistic and linear regression assumptions: Violation recognition and control. https://www.lexjansen.com/wuss/2018/130_Final_Paper_PDF.pdf

45.

Shapiro

D. N.

Chandler

Mueller

P. A.

(2013). Using mechanical Turk to study clinical populations. Clinical Psychological Science, 1(2), 213–220. https://doi.org/10.1177/2167702612469015

46.

Sharma

Jagdish

Anusha

Bharti

(2013). End-of-life care: Indian perspective. Indian Journal of Psychiatry, 55(Suppl 2), S293–S298. https://doi.org/10.4103/0019-5545.105554

47.

Shin

D. W.

Choi

Miyashita

Choi

J. Y.

Kang

Baik

Y. J.

H. N.

Choi

J. S.

Son

Y. S.

Lee

H. S.

(2011). Measuring comprehensive outcomes in palliative care: Validation of the Korean version of the Good Death Inventory. Journal of Pain and Symptom Management, 42(4), 632–642. https://doi.org/10.1016/j.jpainsymman.2010.12.012

48.

Silva

M. D.

Genoff

Zaballa

Jewell

Stabler

Gany

F. M.

Diamond

L. C.

(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.2015.10.011

49.

Smith

A. K.

Sudore

R. L.

Pérez-Stable

E. J.

(2009). Palliative care for latino patients and their families: Whenever we prayed, she wept. JAMA, 301(10), 1047E1. https://doi.org/10.1001/jama.2009.308

50.

Spencer

C. S.

Gaskin

D. J.

Roberts

E. T.

(2013). The quality of care delivered to patients within the same hospital varies by insurance type. Health Affairs (Project Hope), 32(10), 1731–1739. https://doi.org/10.1377/hlthaff.2012.14

51.

Steinberg

S. M.

(2011). Cultural and religious aspects of palliative care. International Journal of Critical Illness and Injury Science, 1(2), 154–156. https://doi.org/10.4103/2229-5151.84804

52.

Suntai

Z. D.

(2022). The intersectional Impact of Race and Gender on Quality of Life at the End of life (order No. 29061598). Available from ProQuest Dissertations & Theses Global, 2691802129. http://ezproxy.baylor.edu/login?url=https://www.proquest.com/dissertations-theses/intersectional-impact-race-gender-on-quality-life/docview/2691802129/se-2

53.

van der Geest (2004). Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana. Social Science & Medicine, 58(5). DOI: https://doi.org/10.1016/j.socscimed.2003.10.041.

54.

Williams

D. W.

Quinlan

C. M.

Reid

A. E.

(2022). A “good death” for all: The need to teach racially sensitive end-of-life care. Journal of General Internal Medicine, 37(9), 2306–2307. https://doi.org/10.1007/s11606-022-07489-2