scholarly journals Concerns of surrogate decision makers for patients with acute brain injury

Neurology ◽  
2020 ◽  
Vol 94 (19) ◽  
pp. e2054-e2068 ◽  
Author(s):  
David Y. Hwang ◽  
Andrea K. Knies ◽  
David Mampre ◽  
Stanislav Kolenikov ◽  
Marci Schalk ◽  
...  
Keyword(s):  
Brain Injury ◽  
Online Survey ◽  
Latent Class ◽  
Functional Disability ◽  
Vegetative State ◽  
Acute Brain Injury ◽  
Decision Makers ◽  
Term Care ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

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.

scholarly journals Treatment choice when faced with high risk of poor outcome – and response to decisions made by surrogates on their behalf

2020 ◽  
Vol 8 (11) ◽  
Author(s):  
Charlie Corke ◽  
Stella-May Gwini ◽  
Sharyn Milnes ◽  
Ben Jong ◽  
Neil Orford
Keyword(s):  
Online Survey ◽  
Treatment Choice ◽  
Decision Makers ◽  
Care Plan ◽  
Poor Outcome ◽  
Advance Care Plan ◽  
Hypothetical Scenario ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Surrogate Decision

Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers. We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker. Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed. This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective. Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions. Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.

scholarly journals Psychological Attachment Orientations of Surrogate Decision-Makers and Goals-of-Care Decisions for Brain Injury Patients in ICUs

2020 ◽  
Vol 2 (7) ◽  
pp. e0151
Author(s):  
Andrea K. Knies ◽  
Qiang Zhang ◽  
Prerak Juthani ◽  
Stephanie Tu ◽  
Jolanta Pach ◽  
...  
Keyword(s):  
Brain Injury ◽  
Decision Makers ◽  
Goals Of Care ◽  
Attachment Orientations ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

scholarly journals Precedent Autonomy and Surrogate Decisionmaking After Severe Brain Injury

2020 ◽  
Vol 29 (4) ◽  
pp. 511-526
Author(s):  
MACKENZIE GRAHAM
Keyword(s):  
Brain Injury ◽  
Advance Directive ◽  
Patient Autonomy ◽  
Sense Of Self ◽  
Decision Makers ◽  
Severe Brain Injury ◽  
Standard Interpretation ◽  
Substituted Judgment ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

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.

scholarly journals Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients

2021 ◽  
pp. 1-11
Author(s):  
Wendy G. Lichtenthal ◽  
Martin Viola ◽  
Madeline Rogers ◽  
Kailey E. Roberts ◽  
Lindsay Lief ◽  
...  
Keyword(s):  
Critically Ill ◽  
Critically Ill Patients ◽  
Experiential Avoidance ◽  
Decision Makers ◽  
Post Intervention ◽  
Prolonged Grief ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Peritraumatic Distress

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.

scholarly journals Outcome Prognostication of Acute Brain Injury using the Neurological Pupil Index (ORANGE) study: protocol for a prospective, observational, multicentre, international cohort study

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e046948
Author(s):  
Mauro Oddo ◽  
Fabio Taccone ◽  
Stefania Galimberti ◽  
Paola Rebora ◽  
Giuseppe Citerio
Keyword(s):  
Brain Injury ◽  
Latent Class ◽  
Acute Brain Injury ◽  
Institutional Review ◽  
Infrared Pupillometry ◽  
Poor Neurological Outcome ◽  
Registration Number ◽  
Poor Outcomes ◽  
Injured Patients ◽  
Neurological Pupil Index

IntroductionThe pupillary examination is an important part of the neurological assessment, especially in the setting of acutely brain-injured patients, and pupillary abnormalities are associated with poor outcomes. Currently, the pupillary examination is based on a visual, subjective and frequently inaccurate estimation. The use of automated infrared pupillometry to measure the pupillary light reflex can precisely quantify subtle changes in pupillary functions. The study aimed to evaluate the association between abnormal pupillary function, assessed by the Neurological Pupil Index (NPi), and long-term outcomes in patients with acute brain injury (ABI).Methods and analysisThe Outcome Prognostication of Acute Brain Injury using the Neurological Pupil Index study is a prospective, observational study including adult patients with ABI requiring admission at the intensive care unit. We aimed to recruit at least 420 patients including those suffering from traumatic brain injury or haemorrhagic strokes, over 12 months. The primary aim was to assess the relationship between NPi and 6-month mortality or poor neurological outcome, measured by the Extended Glasgow Outcome Score (GOS-E, poor outcome=GOS-E 1–4). Supervised and unsupervised methods and latent class mixed models will be used to identify patterns of NPi trajectories and Cox and logistic model to evaluate their association with outcome.Ethics and disseminationThe study has been approved by the institutional review board (Comitato Etico Brianza) on 16 July 2020. Approved protocol V.4.0 dated 10 March 2020. The results of this study will be published in peer-reviewed journals and presented at conferences.Trial registration numberNCT04490005.

Sign in / Sign up

Export Citation Format

Share Document