All medical care providers are legally and ethically bound to respect their patients' wishes. However, as patients lose decision-making capacity and approach end of life, their families or surrogates, who are confronted with grief, fear, self-doubt, and/or uncertainty, may ask physicians to provide treatment that contradicts the patients' previously stated wishes. Our work discusses the legal and ethical issues surrounding such requests and provides guidance for clinicians to ethically and compassionately respond—without compromising their professional and moral obligations to their patients.
To the Editor : A woman with a history of obesity, diabetes, cardiovascular disease, and end-stage renal disease was admitted to an overburdened New York hospital with respiratory distress due to coronavirus disease 2019 (COVID-19). At the time of admission, she was unable to speak for herself, and given restrictions on visitation, it took much effort to find her daughter who did not know the patient's medical wishes. Before COVID-19, the daughter had accompanied her wheelchair-bound mother to all of her appointments including visits with an endocrinologist, cardiologist, primary care doctor, and physical therapist in the preceding 3 months, as well as dialysis appointments three times a week. However, advance care planning (ACP) had never been discussed.
With healthcare systems under pressure from scarcity of resources and ever-increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the policy level. We find that the standard justifications for patient representation, such as to achieve patient-relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants.
Introduction: Although shortcomings in clinician–family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.
Methods and analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4–6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians’ workflow. The primary outcome is surrogates’ ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates’ scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses’ scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.
We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants.
Ethics and dissemination: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals.
Background: A large number of end-of-life decisions are made by a next-of-kin for a patient who has lost their decision-making capacity. This has given rise to investigations into how surrogates make these decisions. The experimental perspective has focused on examining how the decisions we make for others differ from our own, whereas the qualitative perspective has explored surrogate insights into making these decisions.
Methods: We conducted a mixed methods study to bring these two perspectives together. This is crucial to comparing decision outcomes to the decision process. We asked older adult partners to make end-of-life decisions for each other. They then took part in a semi-structured interview about their decision process. Transcripts were analysed using thematic analysis.
Results: 24 participants took part in the study. Surrogates were more likely to take a life-saving treatment at the risk of a diminished quality of life for their partner than for themselves. This was consistent with their transcripts which showed that they wanted to give their partner a better chance of living. Although there was evidence of surrogate inaccuracy in the decision task, participants overwhelmingly reported their intention to make a decision which aligns with the substituted judgment standard. However, uncertainty about their wishes pushed them to consider other factors.
Conclusions: Taking a mixed methods approach allowed us to make novel comparisons between decision outcome and process. We found that the intentions of surrogates broadly align with the expectations of the substituted judgment standard and that previous discussions with their partner helps them to make a decision.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.
The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.
BACKGROUND AND PURPOSE: Critically ill patients require a careful approach for prognosis and decision-making. The German health legislation aims to strengthen the role of advance directives (ADs) and health-care proxies (HCPs). Their impact within a dedicated neurocritical care setting is unknown. This study aimed to assess the practice of withdrawal or withholding of life-sustaining therapy (WOLST) in a German neurointensive care unit (NICU) focusing on whether AD or HCP is associated with timing and treatment intensity.
METHODS: Data on patients who died after WOLST at a dedicated NICU of a German university hospital, from 2010 to 2013, were retrospectively analyzed.
RESULTS: Of 400 deceased patients, 310 (77.5%) died after initiation of WOLST. Among them, 68 (21.9%) were identified to have AD or HCP or both (AD + HCP). WOLST patients with AD, HCP, or AD + HCP were older than those without (median age: 77 vs 72 years, P < .001) but did not show any other distinct baseline features. There was no difference in the specific neurocritical care measures between the groups. Poisson regression analysis showed no significant difference in the probability of time-dependent WOLST initiation between those with and without AD/HCP, after adjusting for age and sex (adjusted incidence rate ratio, 1.10; 95% confidence interval, 0.94-1.28; P = .244).
CONCLUSIONS: In this single-center study of mainly cerebrovascular NICU patients, AD or HCP was neither associated with an earlier WOLST nor associated with a difference in treatment intensity before WOLST. Further prospective studies should assess the emerging concept of advance care planning in neurocritical care.
Objective: To assess levels of knowledge about patients’ rights, surrogate decision-makers, and advance directives among healthcare professionals at three hospitals in France.
Methods: A multicenter, cross-sectional study in three geriatric hospitals in the Paris area (France) in 2015. The participants’ level of knowledge was assessed via an 18-item self-questionnaire on surrogate decision-makers, advance directives, and end-of-life decision-making. The characteristics associated with a good level of knowledge were assessed using logistic regression.
Results: Among the 301 healthcare professionals (median ± standard deviation age: 40.4 ± 10.2 years; women: 73.4 %), only 15.0 % (95 % confidence interval (CI): [19.7–29.5]) correctly answered at least 75 % of the questions on patients’ rights. Respectively 24.6 % [19.7–29.5], 36.5 % [31.1–42.0] and 37.5 % [32.0–43.0] had sufficient knowledge regarding “surrogate decision-maker”, “advance directives”, and “decision-making at the end of life”. In a multivariable analysis, the only factor significantly associated with a good level of knowledge about end-of-life policy was employment in a university hospital, with a non-significant trend for status as a physician.
Conclusions: Our survey of staff working in geriatric care units highlighted the poor overall level of knowledge about healthcare surrogates and advance directives; the results suggest that additional training in these concepts is required.
Practice implications: Continuing education of healthcare professionals on advance directives and surrogate decision-maker should be promoted to ensure rights of elderly patients at the end of life.
Rationale & Objective: Older patients with advanced chronic kidney disease (CKD) utilize intensive care at the end-of-life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non–dialysis-dependent population.
Study Design: n-person, interviewer-administered surveys of patients 70 years and older with non–dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.
Setting & Participants: 42 participants (31 patients, 11 care partners) at two clinical sites in Greater Boston
Outcomes: Completion of advance directives, and self-reported perceptions, preferences, and experiences of ACP.
Analytical Approach: Descriptive analysis of patient and care partner surveys. McNemar’s test analysis to compare patient and care partner responses.
Results: Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians’ judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with two hypothetical scenarios (stroke/heart attack, or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.
Limitations: Single metropolitan area; most patients did not identify a care partner, non-response bias and small sample size.
Conclusions: Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.
BACKGROUND/AIMS: Despite increased demand for cancer patient's to make their own decisions based on an adequate understanding of what is involved in chemotherapy, the primary signing agent and the reasons for surrogate signing have not been appropriately evaluated.
METHODS: The ethics committee of the palliative medicine subgroup of the Korean Cancer Study Group designed this study and solid cancer patients to whom chemotherapy was offered, from seven institutions, were evaluated. The details relating to surrogate's signing of chemotherapy consent were evaluated. Then, we analyzed the factors associated with surrogate's signing according to patient's demographics and characteristics related to chemotherapy consent.
RESULTS: Surrogate's signing was noted for 20.7% (84/405) of patient and over half of surrogate signings were performed by the patients' son or daughter (60.7%). Two main reasons for surrogate signing were patient's incapacity (34.5%) and taking over authorization from patients (33.3%). The factors associated with more frequent surrogate's signing were absence of spouse, lower education level, outpatient, and when residents played a role as a principle provider of chemotherapy consent.
CONCLUSION: This study suggests the lack of patients' own decision making for chemotherapy in some situations. This ethical dilemma must be considered for adequately informed decision making for chemotherapy while ensuring the patients' autonomy is maintained.
Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients’ quality of life and death and dying as well as surrogates’ mental health.
Methods: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods.
Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application.
Trial registration: ClinicalTrials.gov, NCT03276559. Retrospectively registered on 8 September 2017.
Objectif: La loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie demande aux médecins traitants d’informer leurs patients de leur possibilité de rédiger des directives anticipées et de désigner une personne de confiance. Le but de cette étude était de déterminer comment les médecins traitants envisagent la discussion sur la fin de vie avec leurs patients.
Méthode: Il s’agit d’un étude par focus group réalisée auprès de médecins généralistes traitants de Lorraine entre novembre et décembre 2016. Les entretiens ont été enregistrés, retranscrits mot à mot, et une analyse qualitative de contenu triangulée a été réalisée.
Résultats: Trente-deux médecins généralistes répartis en cinq groupes de discussion ont participé. Les médecins souhaitaient que la discussion sur la fin de vie soit initiée par leurs patients, dans les suites d’une médiatisation. La discussion devait permettre une démarche en trois temps : expliquer ses droits au patient, l’accompagner dans sa réflexion, éventuellement avec des confrères spécialistes ou des psychologues, puis l’aider à retranscrire ses volontés. À la demande du patient, la personne de confiance pourrait assister à cette discussion. Un temps dédié de consultation serait souhaitable, mais nécessiterait une éducation de la patientèle à ne venir que pour ce sujet. Certains envisageaient plusieurs consultations, selon les besoins du patient. La durée moyenne de la consultation serait adaptée au patient. Elle était estimée à 30 minutes. Une rémunération appropriée était demandée.
Conclusion: La discussion sur la fin de vie est un processus complexe nécessitant d’être reconnu, notamment via une consultation dédiée et une rémunération adaptée.
Background: Advance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future, and has been shown to reduce hospital-based interventions at the end of life. Our goal was to describe the current state of ACP in a home-based primary care program for frail homebound older people in Vancouver, Canada. We did this by identifying four key elements that should be essential to ACP in this program: frailty stage, documentation of substitute decision-makers, and decision-making with regard to both resuscitation (i.e., do not resuscitate (DNR)) and hospitalization (i.e., do not hospitalize (DNH)). While these elements are an important part of the ACP process, they are often excluded from common practice.
Methods: This was a cross-sectional, observational study of data abstracted from 200 randomly selected patient electronic medical records between July 1 and September 30, 2017. We describe the association between demographic characteristics, comorbidities, and four key elements of ACP documentation and decision-making as documented in the clinical record using bivariate comparison, a logistic regression model and multiple logistic regression analysis.
Results: In 73% (n=146) of the patient records, there was no explicit documentation of frailty stage. Sixty-four per cent had documentation of a substitute decision-maker. Of those who had their preferences documented, 90.6% (n=144/159) indicated a preference for DNR, and 23.6% (n=29/123) indicated a preference for DNH. In multiple regression modeling, a diagnosis of dementia and older age were associated with documentation of a DNR preference, adjusted odds ratio (AOR) = 4.79 (95% CI 1.37, 16.71) and AOR = 1.14 (95% CI 1.05, 1.24), respectively. Older age, male sex, and English identified as the main language spoken were associated with a DNH preference. AOR = 1.17 (95% CI 1.06, 1.28), AOR = 4.19 (95% CI 1.41, 12.42), and AOR = 3.42 (95% CI 1.14, 10.20), respectively.
Conclusions: Clinician documentation of some elements of ACP, such as identification of a substitute decision-maker and resuscitation status, have been widely adopted, while other elements that should be considered essential components of ACP, such as frailty staging and preferences around hospitalization, are infrequent and provide an opportunity for practice improvement initiatives. The significant association between language and ACP decisions suggests an important role for supporting cross-cultural fluency in the ACP process.
OBJECTIVE: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers' experiences and perspectives toward making surrogate decisions is needed.
METHODS: This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008).
RESULTS: Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates' experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults' wishes, and negative impact.
CONCLUSION: Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances.
PRACTICE IMPLICATIONS: This review informs healthcare providers' awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.
INTRODUCTION: In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation.
METHODS AND ANALYSIS: SDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient's death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks-the Common-Sense Self-Regulation Model and the Theoretical Domains Framework- to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis.
ETHICS AND DISSEMINATION: This study has been approved by the Centre Hospitalier de l'Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation.
With the growing number of individuals with Autism Spectrum Disorder (ASD) reaching the age of consent, health-care providers must be prepared to bridge gaps in their knowledge of ASD. This is especially true for clinicians who may have to determine if a person with ASD has the capacity to engage in end-of-life decision making, complete advance directives, or act as a surrogate decision maker for someone else. This paper provides an overview of the unique characteristics of autism as related to the communication, cognitive processing, and the capability to participate in advance care planning and, when acting as a surrogate decision maker, to consider the values and preferences of others. In addition, we examine the roles and responsibilities of clinician as facilitator of shared health-care decision making communication with the individual who has autism. Consideration is given to determining capacity, planning for atypical responses, the impact or lack of influence of the framing effect, and strategies for presenting information. Finally, we will offer health-care providers information and examples for adapting their existing end-of-life decision-making tools and conversation guides to meet the communication needs of persons with ASD.
This article examines the evolution of advance care planning (ACP) in Singapore through the development of a less-formal, communications-based model - the Living Matters program - and its experience with local cultural and community responses to the process and its outcomes. Living Matters is, in practice, arguably a communitarian approach to ACP. The article then examines the challenges Living Matters poses to the overarching legal framework for ACP and suggests improvements to the proxy decision-making framework under the Mental Capacity Act (Singapore, cap 177A, 2010 rev ed), offering more flexible legal tools for ACP, and more regulatory support for the means to implement ACP outcomes effectively.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.