scholarly journals Precedent Autonomy and Surrogate Decisionmaking After Severe Brain Injury

2020 ◽  
Vol 29 (4) ◽  
pp. 511-526
Author(s):  
MACKENZIE GRAHAM

AbstractPatients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.

Neurology ◽  
2020 ◽  
Vol 94 (19) ◽  
pp. e2054-e2068 ◽  
Author(s):  
David Y. Hwang ◽  
Andrea K. Knies ◽  
David Mampre ◽  
Stanislav Kolenikov ◽  
Marci Schalk ◽  
...  

ObjectiveTo determine whether groups of surrogates for patients with severe acute brain injury (SABI) with poor prognosis can be identified based on their prioritization of goals-of-care (GOC) decisional concerns, an online survey of 1,588 adults recruited via a probability-based panel representative of the US population was conducted.MethodsParticipants acted as a surrogate for a GOC decision for a hypothetical patient with SABI and were randomized to 1 of 2 prognostic scenarios: the patient likely being left with a range of severe functional disability (SD) or remaining in a vegetative state (VS). Participants prioritized a list of 12 decisional concerns via best-worst scaling. Latent class analysis (LCA) was used to discover decisional groups.ResultsThe completion rate was 44.6%; data weighting was conducted to mitigate nonresponse bias. For 792 SD respondents, LCA revealed 4 groups. All groups shared concerns regarding respecting patient wishes and minimizing suffering. The 4 groups were otherwise distinguished by unique concerns that their members highlighted: an older adult remaining severely disabled (34.4%), family consensus (26.4%), doubt regarding prognostic accuracy (20.7%), and cost of long-term care (18.6%). For the 796 VS respondents, LCA revealed 5 groups. Four of the 5 groups had similar concern profiles to the 4 SD groups. The largest (29.0%) expressed the most prognostic doubt. An additional group (15.8%) prioritized religious concerns.ConclusionsAlthough surrogate decision makers for patients with SABI are concerned with respecting patient wishes and minimizing suffering, certain groups highly prioritize other specific decisional factors. These data can help inform future interventions for supporting decision makers.


2020 ◽  
Vol 2 (7) ◽  
pp. e0151
Author(s):  
Andrea K. Knies ◽  
Qiang Zhang ◽  
Prerak Juthani ◽  
Stephanie Tu ◽  
Jolanta Pach ◽  
...  

2020 ◽  
Vol 1 (4) ◽  
pp. 01-03
Author(s):  
Muhammad Tariq Shakoor ◽  
Samia Ayub ◽  
Abdul Ahad ◽  
James Kruer

Advance directive is a legal document that allows people to accept or decline medical interventions and to appoint surrogate decision makers if they become incapacitated. Advance directives often do not neatly address all the specific medical situations and may require interpretation. There are many limitations of advance directives which can lead to irreversible medical errors. The goal of this article is to share my experience and discuss different scenarios related to the case.


2021 ◽  
pp. 1-11
Author(s):  
Wendy G. Lichtenthal ◽  
Martin Viola ◽  
Madeline Rogers ◽  
Kailey E. Roberts ◽  
Lindsay Lief ◽  
...  

Abstract Objective The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates’ mental health and patient outcomes. Method Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15–20 min modules, totaling 1.5–2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. Results Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = −0.41), peritraumatic distress (d = −0.24), and experiential avoidance (d = −0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = −0.94), depression (d = −0.23), anxiety (d = −0.29), and experiential avoidance (d = −0.30). Significance of results Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.


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