Perspectives on Outcome After Severe TBI: A Scoping Review
William Choi1, Danielle Burnetta2, Kathleen McColgan2, Bhumi Patel2, Mallory Spring2, Jean Paul Vasquez Rivera2, Yelena Bodien3, Joseph Giacino3
1Warren Alpert Medical School of Brown University, 2Massachusetts General Hospital, 3Spaulding Rehabilitation Hospital
Objective:

To identify the beliefs and values of patients, caregivers, clinicians and researchers that affect treatment decisions for patients with serious illnesses or injuries, and the outcomes that are studied in the acute care literature.

Background:

Physicians who care for patients with brain injuries often dichotomize the GOSE (Glasgow Outcome Scale Extended) to evaluate “favorable” and “unfavorable” outcomes. However, these dichotomizations are not standardized across studies and do not typically involve patient or caregiver input, raising concerns about clinicians’ biases determining the favorability of outcomes.

Design/Methods:

We searched MEDLINE, Web of Science Core Collection, PsycINFO, and CINAHL, which yielded 2188 abstracts that were reviewed by a dyad of independent reviewers to retrieve 123 eligible articles on studies relating to treatment-related medical decision-making for acute, life-threatening illnesses. The aim of our review was to answer the following  question: what values and beliefs affect treatment decisions for persons with serious illness or injury?

Results:

Of the 123 included articles, 98 (80%) addressed withdrawal of life-sustaining treatment. 90 articles (73%) discussed TBI or another neurologic condition. Almost all articles addressed the outcome of death versus survival (n=119; 96.7%). The next most commonly addressed outcome was survival with permanent complete disability or unconsciousness (n=44; 35.8%). The majority of articles addressed values regarding the patient’s autonomy, such as their prior expressed wishes (n=91; 73.9%) and their ability to function independently (n=66; 53.7%). Many articles also addressed concepts relating to the patient’s physical and mental wellbeing (n=89; 72.4%) and their level of discomfort, pain or suffering (n=65; 52.8%).

Conclusions:

The majority of articles focused on milestones relating to survival, recovery of consciousness and functional independence, and the most commonly invoked value judgments pertaining to principles of autonomy and beneficence/non-maleficence. Future research is necessary to explore patients’ preferences for different outcomes and value judgments that may lie outside of ethical principlism.

10.1212/WNL.0000000000210444
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.