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Importance In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired. Objective To test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia. Design, Setting, and Participants A single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes. Interventions A GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning. Main Outcomes and Measures Primary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the “best goal to guide care and medical treatment,” and clinicians’ “top priority for care and medical treatment”), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment. Results Residents’ mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P = .05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P = .02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P = .001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more palliative care content in treatment plans (5.6 vs 4.7, P = .02), MOST order sets (35% vs 16%, P = .05), and half as many hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88). Survival at 9 months was unaffected (adjusted hazard ratio [aHR], 0.76; 95% CI, 0.54-1.08; P = .13). Conclusions and Relevance The GOC decision aid intervention is effective to improve end-of-life communication for nursing home residents with advanced dementia and enhance palliative care plans while reducing hospital transfers. Trial Registration clinicaltrials.gov Identifier:NCT01565642

African Americans' beliefs about end-of-life care may differ from those of whites, but racial differences in advance care planning (ACP) outcomes are unknown.The aim of this study was to compare the efficacy of an ACP intervention on preparation for end-of-life decision making and post-bereavement outcomes for African Americans and whites on dialysis.A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) with usual care was conducted. There were 420 participants, 210 patient-surrogate dyads (67.4% African Americans), recruited from 20 dialysis centers in North Carolina. The outcomes of preparation for end-of-life decision making included dyad congruence on goals of care, surrogate decision-making confidence, a composite of the two, and patient decisional conflict assessed at 2, 6, and 12 months post-intervention. Surrogate bereavement outcomes included anxiety, depression, and post-traumatic distress symptoms assessed at 2 weeks, and at 3 and 6 months after the patient's death.SPIRIT was superior to usual care in improving dyad congruence (odds ration [OR] = 2.31, p = 0.018), surrogate decision-making confidence (β = 0.18, p = 0.021), and the composite (OR = 2.19, p = 0.028) 2 months post-intervention, but only for African Americans. SPIRIT reduced patient decisional conflict at 6 months for whites and at 12 months for African Americans. Finally, SPIRIT was superior to usual care in reducing surrogates' bereavement depressive symptoms for African Americans but not for whites (β = -3.49, p = 0.003).SPIRIT was effective in improving preparation for end-of-life decision-making and post-bereavement outcomes in African Americans.

Background/aims: Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes. Methods: The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia. In 11 intervention nursing homes, family decision-makers for residents with advanced dementia received a two-component intervention: viewing a video decision aid about goals of care choices and then participating in a structured decision-making discussion with the nursing home care plan team, ideally within 3 months after the decision aid was viewed. Following guidelines from the National Institutes of Health Behavior Change Consortium, fidelity was assessed in study design, in nursing home staff training for intervention implementation, and in monitoring and receipt of the intervention. We also monitored the content and timing of goals of care discussions. Results: Investigators enrolled 151 family decision-maker/resident dyads in intervention sites; of those, 136 (90%) received both components of the intervention, and 92%–99% of discussions addressed each of four recommended content areas—health status, goals of care, choice of a goal, and treatment planning. A total of 94 (69%) of the discussions between family decision-makers and the nursing home care team were completed within 3 months. Conclusion: The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia. Key supports for implementation included design features that aligned with nursing home practice, efficient staff training, and a structured guide for goals of care discussions between family decision-makers and staff. These approaches may be used to promote fidelity to behavioral interventions in future clinical trials.

Self-care behaviors are crucial for following the complex regimen after lung transplantation, yet little is known about recipients' levels of self-care agency (the capability and willingness to engage in self-care behaviors) and its correlates. We examined levels of self-care agency and recipient characteristics (socio-demographics, psychological distress, quality of relationship with primary lay caregiver, and health locus of control) in 111 recipients. Based on Perceived Self-Care Agency scores, recipients were assigned to either the low- or high-self-care agency comparison group. Characteristics were compared between groups to identify characteristics likely to be associated with lower-self-care agency. Mean (SD) score for self-care agency (scale range, 53-265) was 223.02 (22.46). Recipients with lowest-self-care agency scores reported significantly poorer quality of caregiver relationships (p < 0.001) and greater psychological distress (p < 0.001). After controlling for psychological distress, the quality of the recipient-caregiver relationship remained significantly associated with self-care agency. Every one-point decrease in the quality of caregiver relationship increased the risk of low-self-care agency by 12%. Recipients with poorer caregiver relationships and greater psychological distress may need additional support to perform the self-care behaviors expected after lung transplantation.

Shared decision making is inadequate in intensive care units. Decision aids can improve decision making quality, though their role in an intensive care units setting is unclear. We aimed to develop and pilot test a decision aid for shared decision makers of patients undergoing prolonged mechanical ventilation.Intensive care units at three medical centers.Fifty-three surrogate decision makers and 58 physicians.We developed the decision aid using defined methodological guidelines. After an iterative revision process, formative cognitive testing was performed among surrogate-physician dyads. Next, we compared the decision aid to usual care control in a prospective, before/after design study.Primary outcomes were physician-surrogate discordance for expected patient survival, comprehension of relevant medical information, and the quality of communication. Compared to control, the intervention group had lower surrogate-physician discordance (7 [10] vs. 43 [21]), greater comprehension (11.4 [0.7] vs. 6.1 [3.7]), and improved quality of communication (8.7 [1.3] vs. 8.4 [1.3]) (all p.05) post-intervention. Hospital costs were lower in the intervention group ($110,609 vs. $178,618; p=.044); mortality did not differ by group (38% vs. 50%, p=.95). Ninety-four percent of the surrogates and 100% of the physicians reported that the decision aid was useful in decision making.We developed a prolonged mechanical ventilation decision aid that is feasible, acceptable, and associated with both improved decision-making quality and less resource utilization. Further evaluation using a randomized controlled trial design is required to evaluate the decision aid's effect on long-term patient and surrogate outcomes.

song m.-k., happ m.b. & sandelowski m. (2010) Development of a tool to assess fidelity to a psycho-educational intervention. Journal of Advanced Nursing66(3), 673–682. Abstract Aim. This paper is a description of a method to develop and conduct a customized psycho-educational intervention fidelity assessment as part of pilot work for an efficacy study. A tool designed to assess treatment fidelity to a psycho-education intervention for patients with end-stage renal disease and their surrogate decision makers, Sharing the Patient’s Illness Representations to Increase Trust, is presented as an illustration. Background. Despite the specificity and idiosyncrasy of individual interventions and the call to systematically evaluate treatment fidelity, how to accomplish this goal has not been clarified. Tools to adequately measure treatment fidelity are lacking. Methods. We developed the Sharing the Patient’s Illness Representations to Increase Trust Treatment Fidelity Assessment tool by identifying elements that were idiosyncratic to the intervention and those that could be adapted from existing tools. The tool has four components: overall adherence to the intervention content elements; pacing of the intervention delivery; overall dyad responsiveness; and, overall quality index of intervention delivery. The study was undertaken between 2006 and 2008. Results. Inter-rater reliability ranged from 0·80 to 0·87 for the four components. The tool showed utility in training and monitoring, such as detecting unplanned content elements delivered and the use of proscribed communication behaviours. Conclusion. Psycho-educational interventions are one of the most common types of nursing interventions worldwide. Use of fidelity assessment tools customized to the individual interventions may enhance systematic evaluation of training and monitoring treatment fidelity.

The objective of the study was to examine whether psychosocial and spiritual well-being is associated with African American dialysis patients' end-of-life treatment preferences and acceptance of potential outcomes of life-sustaining treatment. Fifty-one African Americans with end-stage renal disease (ESRD) completed a sociodemographic questionnaire and interview with measures of symptom distress, health-related quality of life, psychosocial and spiritual well-being, and preferences and values related to life-sustaining treatment choices. The subjects were stratified by end-of-life treatment preferences and by acceptance of life-sustaining treatment outcomes, and compared for psychosocial and spiritual well-being, as well as sociodemographic and clinical characteristics. Individuals who desired continued use of life-sustaining treatment in terminal illness or advanced dementia had significantly lower spiritual well-being (P=0.012). Individuals who valued four potential outcomes of life-sustaining treatment as unacceptable showed a more positive, adaptive well-being score in the spiritual dimension compared with the group that valued at least one outcome as acceptable (P=0.028). Religious involvement and importance of spirituality were not associated with end-of-life treatment preferences and acceptance of treatment outcomes. African Americans with ESRD expressed varied levels of psychosocial and spiritual well-being, and this characteristic was associated with life-sustaining treatment preferences. In future research, the assessment of spirituality should not be limited to its intensity or degree but extended to other dimensions.