Conceptualization of Surrogate Decision-making Among Spokespersons for Chronically Ill Patients

IMPORTANCE: The value of advance care planning (ACP) has been the subject of recent debate because of mixed findings. This may be, in part, because trials presume that researchers and patient spokespersons share the same understanding of the role of a surrogate decision-maker. We explored how patient surrogates conceptualized and defined surrogate decision-making vs patient advocacy. Understanding how surrogates perceive their role in decision-making is important to avoid misinterpreting the effectiveness of ACP interventions. OBJECTIVE: To understand how patient spokespersons distinguish surrogate decision-making from patient advocacy. DESIGN, SETTING, AND PARTICIPANTS: This qualitative thematic analysis of a subsample of participants from a randomized clinical trial at a tertiary medical center was conducted from September 27, 2012, to June 30, 2021. Participants (n = 36) were the designated spokespersons of adult patients with severe illness who had made a surrogate decision on behalf of the patient since the last follow-up. Analysis was performed from March 21, 2021, to February 7, 2022. MAIN OUTCOMES AND MEASURES: Semistructured interviews examined how patient spokespersons conceptualize differences between surrogate decision-making and advocacy. RESULTS: The study included 36 patient spokespersons (32 women [88.9%]; mean [SD] age, 62.1 [11.8] years) and found substantial variability in how the spokespersons conceptualized what it means to make a surrogate decision for another. A total of 10 spokespersons (27.8%) did not distinguish surrogate decision-making from advocacy. There were 5 definitions for both surrogate decision-making and advocacy. The 3 most common definitions of surrogate decision-making were (1) acting as the final decision-maker (18 [50.0%]), (2) doing what is best for the patient (8 [22.2%]), and (3) making decisions on behalf of patients so that their wishes are respected (6 [16.7%]). The 3 most common definitions of advocacy were (1) doing what is best for the patient (8 [22.2%]), (2) respecting patients\u27 wishes (6 [16.7%]), and (3) providing support to the patient (6 [16.7%]). The most common pairing of definitions by an individual spokesperson involved defining surrogate decision-making as being the final decision-maker, and defining advocacy as acting in the best interest of the patient (6 [16.7%]). CONCLUSIONS AND RELEVANCE: This qualitative study found that many spokespersons perceive their roles as surrogate decision-makers differently than clinicians and researchers likely do, often conflating surrogacy with advocacy. These findings may help explain why researchers have found that ACP does not consistently improve traditional outcomes. If spokespersons do not distinguish surrogate decision-making from advocacy, then what is being reported by spokespersons and measured by clinicians and researchers may not accurately reflect the true association of ACP with outcomes

Adaptation and Preliminary Validation of the Advance Care Planning Engagement Survey for Surrogate Decision Makers

CONTEXT:Although measures that assess patient engagement in the advance care planning (ACP) process exist, there are no validated tools to assess surrogate decision makers' (SDMs') role in ACP. OBJECTIVES:The objective of this study was to adapt and begin to validate a patient-oriented questionnaire for use with SDMs of patients with chronic illness. METHODS:Questions from the 55-item patient-oriented ACP engagement survey were adapted for SDMs and assessed for face validity. The resultant 47-item questionnaire was administered to 65 SDMs of patients with chronic illness. Responses were assessed and items were flagged for removal based on item redundancy, nonresponses, and ceiling effects. A preliminary exploratory factor analysis was performed, internal consistency was assessed, and domains were constructed based on findings. RESULTS:The 47-item questionnaire was administered to 65 participants (mean age 51.8; 81% female; 96% Caucasian). Seventeen items were removed owing to redundancy (r > 0.80), and 13 items lacking face validity were removed. In a preliminary exploratory factor analysis of the resultant 17-item questionnaire, a three-factor solution was deemed most statistically and conceptually sound. Items were organized into domains: 1) serving as an SDM (seven items); 2) contemplation (four items); 3) readiness (six items). Internal consistency for each domain was high (Cronbach alpha 0.90-0.91). CONCLUSION:The 17-item ACP engagement survey for SDMs (ACP-17-SDM) is a conceptually sound and reliable questionnaire adaptation of the original ACP engagement survey. This questionnaire may be used by researchers in parallel with the patient-oriented ACP engagement survey to more fully understand the impact of ACP interventions on SDMs. Larger studies are needed to more closely examine construct validity

Optimizing COVID-19 Health Campaigns: A Person-Centered Approach

As the United States continues to be ravaged by COVID-19, it becomes increasingly important to implement effective public health campaigns to improve personal behaviors that help control the spread of the virus. To design effective campaigns, research is needed to understand the current mitigation intentions of the general public, diversity in those intentions, and theoretical predictors of them. COVID-19 campaigns will be particularly challenging because mitigation involves myriad, diverse behaviors. This study takes a person-centered approach to investigate data from a survey (N = 976) of Pennsylvania adults. Latent class analysis revealed five classes of mitigation: one marked by complete adherence with health recommendations (34% of the sample), one by complete refusal (9% of the sample), and three by a mixture of adherence and refusal. Statistically significant covariates of class membership included relatively negative injunctive norms, risk due to essential workers in the household, personal knowledge of someone who became infected with COVID-19, and belief that COVID-19 was a leaked biological weapon. Additionally, trait reactance was associated with non-adherence while health mavenism was associated with adherence. These findings may be used to good effect by local healthcare providers and institutions, and also inform broader policy-making decisions regarding public health campaigns to mitigate COVID-19

A mixed methods study exploring requests for unproven COVID therapies such as ivermectin and healthcare distrust in the rural South

The COVID-19 pandemic has led to contentious discourse regarding unproven COVID-19 therapies (UCTs),(e.g. ivermectin). Despite recommendations against it, ivermectin remains, in some areas, highly demanded. The goal of this study is to understand patient and provider perspectives about UCTs (e.g., ivermectin) and how responses to requests for UCTs impact healthcare distrust. This mixed methods observational study was conducted in a rural healthcare system in the Southern United States. Adults (n = 26) with a history of COVID-19 or clinicians (n = 8) from the same system were interviewed using questionnaires assessing healthcare distrust and qualitatively interviewed exploring perceptions about UCTs. Patient themes were: 1) Importance of anecdotal stories for decision-making; 2) Use of haphazard approaches to ‘research’; 3) Strong distrust of government and healthcare organizations; 4) Inherent trust in local healthcare; 5) Decision-making as weighing pros/cons; and 6) Feeling a right to try medications. High survey medians indicated high distrust with differences of 8.5 points for those who requested/used ivermectin versus those who did not (p = 0.027). Clinician themes were: 1) Frustration when patients trust social media over clinicians; 2) Acceptance of community beliefs about UCTs; 3) Distrust originating outside of the healthcare system; 4) Feeling torn about prescribing UCTs to build trust; and 5) Variable educational strategies. When clinicians are perceived as aligned with government, this may void patients’ trust of clinicians. Clinicians should leverage trust in local healthcare and distance themselves from distrusted information sources. Ethical questions arise regarding appropriateness of acquiescing to patient requests for ivermectin for building trust

The Impact of Health Communication Research on Medical and Health Professional Education and Training

In this essay, we review how health communication scholarship has been translated into various communication skills trainings (CSTs), we present four case studies of how health communication research informed the development and implementation of specific CSTs, and we reflect on how we can productively define “impact” in looking back as well as looking forward within this line of research

Improving partnerships with family members of ICU patients: study protocol for a randomized controlled trial

BackgroundOver the last decade, health care delivery has shifted to partnering with patients and their families to improve health and quality of care, and to lower costs. Partnering with family members (FMs) of critically ill patients who lack capacity is particularly important for improving experiences and outcomes for both patients and FMs. How best to apply such partnering strategies, however, is yet unknown. The IMPACT trial will evaluate two interventions that enable partnerships with families of critically ill patients, each in a distinct content area, but similar in that they empower and support FMs.MethodsThis multi-center, open-label, randomized, phase II clinical trial aims to randomize 150 older, long-stay ICU patients and their families into one of three groups (50 in each group): (1) The OPTimal nutrition by Informing and Capacitating FMs of best practices (OPTICs) group, a multi-faceted intervention to engage and empower FMs to advocate for, and audit, best nutritional practices for their critically ill FMs, (2) A web-based decision-support intervention called the ICU Workbook (The Canadian Researchers at the End of Life Network (CARENET) ICU Workbook; https://www.myicuguide.ca/. Accessed 3 Feb 2017.) to support families in shared decision-making process regarding goals of medical treatments, and (3) Usual care. The main outcomes for this trial include nutritional adequacy in hospital and hand-grip strength prior to hospital discharge; satisfaction with decision-making; decision conflict; and degree of shared decision-making.DiscussionWith the goal of improving the functional recovery of nutritionally high-risk older patients and the quality of care at the end of life for these patients and their FMs in the ICU, we have proposed two novel family capacitation strategies. We hope that the nutrition and decision-support interventions implemented and evaluated in our study will contribute to the evidentiary basis for best family partnered care pathways focused on optimizing the quality of ICU care for patients with life-threatening illness and their families.Trial registrationClinical trials.gov, ID: NCT02920086. Registered on 30 September 2016. Protocol version dated 11 October 2016

Marie-Claire / dir. Jean Prouvost

01 mai 19441944/05/01 (A0,N311)-1944/05/01.Appartient à l’ensemble documentaire : UnivJeun