Whose Good Death? Valuation and Standardization as Mechanisms of Inequality in Hospitals

Abstract

Although most clinicians have come to perceive invasive life-sustaining treatments as overly aggressive at the end of life, some of the public and greater proportions of some socially disadvantaged groups have not. Drawing on 1,500+ hours of observation in four intensive care units and 69 interviews with physicians and patients’ family members, I find inequality occurs through two mechanisms complementary to the cultural health capital and fundamental causes explanations prevalent in existing health disparities literature: in valuation, as the attitudes and values of the socially disadvantaged are challenged and ignored, and in standardization, as the outcomes preferred by less advantaged groups are defined as inappropriate and made harder to obtain by the informal and formal practices and policies of racialized organizations. I argue inequality is produced in part because wealthier and White elites shape institutional preferences and practices and, therefore, institutions and clinical standards to reflect their cultural tastes.

Racial Differences in Shared Decision-Making About Critical Illness

“…When used by Black caregivers, the same resource appeared to be less credible or frankly threatening to the clinician’s expertise, which resulted in less sharing of medical information and even conflict . We also observed clinicians disproportionately challenging Black caregivers’ decisions for their loved ones . These data substantiate testimonies of Black patients with serious illness and report that silencing and dismissal are the most commonly experienced forms of interpersonal racism, which then contribute to their perceptions of clinician and health system untrustworthiness .…”

Matters of care and the good death – rhetoric or reality?

“…A further example was a study of people of Hispanic background (mostly men) who rated being free from pain – physical and/or emotional – as of lesser importance than other issues. Similarly, American Indian, Alaskan and Indigenous participants were less likely to rate control over the future as an important aspect of a ‘good death’ 28▪ .…”

“…People with socioeconomic deprivation are more likely to have: a higher symptom burden; greater difficulty navigating complex healthcare systems and higher use of health care when they do have access; a preference for and greater use of intensive treatment at the EOL; limited formal and informal social support; and are more likely to experience financial distress at EOL 22▪▪ . Findings from an ethnographic study in the ICU highlighted how those who are socially disadvantaged are more likely than others to conceptualise the ‘good death’ as having active treatment 23▪▪ . Clinicians tended to viewed ‘aggressive’ treatments as inappropriate according to normative EOL care scripts shaping organisational practices.…”

Critical care nurses' role in the decision‐making process of withdrawal of life‐sustaining treatment: A qualitative systematic review

“…However, in a study, a family wanted more aggressive treatment for a critical care patient than healthcare professionals deemed appropriate. Healthcare professionals met this family with suspicion and the communication between the healthcare professional and the family broke down (Hauschildt, 2022).…”

“…Furthermore, nurses also need to be aware that their view that WLST should be initiated may not align with patients' and family's view as patients and families may want to continue with invasive interventions. In a study, the researcher observed many patients and families wishing to live as long as a possible and patients and families saw value in trying treatments with a low chance of success (Hauschildt, 2022).…”