Equity in Clinical Care and Research Involving Persons with Disorders of Consciousness.
Details
Serval ID
serval:BIB_0C119E985586
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Equity in Clinical Care and Research Involving Persons with Disorders of Consciousness.
Journal
Neurocritical care
Working group(s)
Curing Coma Campaign and its contributing members
ISSN
1556-0961 (Electronic)
ISSN-L
1541-6933
Publication state
Published
Issued date
10/2024
Peer-reviewed
Oui
Editor
Curing Coma Campaign, its contributing members
Volume
41
Number
2
Pages
345-356
Language
english
Notes
Publication types: Journal Article ; Review
Publication Status: ppublish
Publication Status: ppublish
Abstract
People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in access to acute care, expertise, and sophisticated diagnostic, prognostic, and therapeutic interventions. Concerns about equity for people with DoC are particularly notable when they lack a surrogate decision-maker (legally referred to as "unrepresented" or "unbefriended"). Decisions about both short-term and long-term life-sustaining treatment typically rely on neuroprognostication and individual patient preferences that carry additional ethical considerations for people with DoC, as even individuals with well thought out advance directives cannot anticipate every possible situation to guide such decisions. Further challenges exist with the inclusion of people with DoC in research because consent must be completed (in most circumstances) through a surrogate, which excludes those who are unrepresented and may discourage investigators from exploring questions related to this population. In this article, the Curing Coma Campaign Ethics Working Group reviews equity considerations in clinical care and research involving persons with DoC in the following domains: (1) access to acute care and expertise, (2) access to diagnostics and therapeutics, (3) neuroprognostication, (4) medical decision-making for unrepresented people, (5) end-of-life decision-making, (6) access to postacute rehabilitative care, (7) access to research, (8) inclusion of unrepresented people in research, and (9) remuneration and reciprocity for research participation. The goal of this discussion is to advance equitable, harmonized, guideline-directed, and goal-concordant care for people with DoC of all backgrounds worldwide, prioritizing the ethical standards of respect for autonomy, beneficence, and justice. Although the focus of this evaluation is on people with DoC, much of the discussion can be extrapolated to other critically ill persons worldwide.
Keywords
Humans, Consciousness Disorders/therapy, Biomedical Research/ethics, Healthcare Disparities/ethics, Health Equity, Decision Making/ethics, Critical Care/ethics, Coma, Disorders of consciousness, Disparities, Equity, Ethics, Research
Pubmed
Web of science
Create date
17/06/2024 14:32
Last modification date
10/09/2024 6:17