Center for Medical Ethics and Health Policy Staff Publications
Publication Date
1-1-2025
Journal
AJOB Empirical Bioethics
DOI
10.1080/23294515.2024.2399534
PMID
39250770
PMCID
PMC11785475
PubMedCentral® Posted Date
2-1-2025
PubMedCentral® Full Text Version
Author MSS
Published Open-Access
yes
Keywords
Humans, Intensive Care Units, Critical Illness, Decision Making, Stress, Psychological, Communication, Female, Male, Terminal Care, Professional-Family Relations, Qualitative Research, Family, Adult, Middle Aged, Critical Care, Suffering, intensive care units, ethics, goals of care, futility, qualitative research
Abstract
Background: Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients' families.
Methods: We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012-2017 to look at how the term "suffering" and its variants were used. A coding guide was developed by consensus-oriented discussion by four members of the research team. Two coders independently evaluated each transcript. We followed an inductive approach to data analysis in reviewing transcripts; findings were iteratively discussed among study authors until consensus on key themes was reached.
Results: Of 146 available transcripts, 34 (23%) contained the word "suffer" or "suffering" at least once, with 58 distinct uses. Clinicians contributed 62% of first uses. Among uses describing the suffering of persons, 57% (n = 24) were related to a decision, but only 42% (n = 10) of decision-relevant uses accompanied a proposal to limit treatment, and only half of treatment-limiting uses (n = 5) were initiated by clinicians. The target terms had a variety of implicit meanings, including poor prognosis, reduced functioning, pain, discomfort, low quality of life, and emotional distress. Suffering was frequently attributed to persons who were unconscious.
Conclusions: Our results did not support the claim that the term "suffering" and its variants are used primarily by clinicians to justify limiting treatment, and the terms were not commonly used in our sample when decisions were requested. Still, when these terms were used, they were often used in a decision-relevant fashion.