BACKGROUND:Rates of advance care planning (ACP) are lower and preferences for life-prolonging treatment are higher among Black compared to White older adults. We examined whether these differences persisted during the COVID-19 pandemic. METHODS:Between February 2021 and September 2022, we conducted a cross-sectional COVID-19-focused survey of seriously ill adults ≥ 65 years in 10 primary care clinics participating in a clinical trial of two ACP interventions. Logistic regression models examined associations between COVID-19 related ACP discussion (defined as discussions with family, friends, or doctors about COVID-related medical care) and treatment preferences if very sick with COVID-19 (life-prolonging treatment, comfort care, trial of life-prolonging with transition to comfort care if no improvement) overall and by race, controlling for baseline characteristics. RESULTS:Among 428 participants (55.9% Black, 44.2% White; mean age 74.6), 25% reported discussing COVID-19 treatment preferences with family/friends and 6% with doctors. Most reported no change in willingness to participate in ACP due to the pandemic, though increased willingness was more common among Black than White participants (22.4% vs. 14.0%, p = 0.016). Despite this, COVID-19-related ACP discussion did not differ by race (family/friends: 22.7% vs. 28.3%, p = 0.19; doctors: 6.9% vs. 4.8%, p = 0.37). Most seriously ill older adults preferred a time-limited trial of life-prolonging treatment (71% White, 56.2% Black); though preferences varied by race (p < 0.0001); Black participants compared to White participants more often preferred life-prolonging treatment (28.5% vs. 10.3%). In adjusted models, race was not associated with COVID-19-related ACP discussion (OR 0.72, 95% CI 0.44-1.18), while preferences for life-prolonging treatments predicted greater COVID-19 related ACP discussion (OR 1.98, 95% CI 1.14-3.44). CONCLUSION:In contrast to pre-pandemic ACP research, no racial differences were observed in COVID-19-related ACP discussion, though differences in treatment preferences persisted. These findings underscore the need for culturally responsive, context-sensitive ACP approaches among seriously ill older adults.
BACKGROUND:Advance care planning (ACP) supports seriously ill individuals in identifying and communicating their values and preferences for future care. However, disparities in ACP engagement persist, particularly among African American older adults. This study examined racial differences and predictors of readiness to engage in ACP among seriously ill African American and White older adults. METHODS:This cross-sectional analysis used baseline data from the EQUAL ACP cluster randomized trial testing two ACP interventions. Participants included 792 community-dwelling, non-Hispanic African American (n = 428) and White (n = 364) adults aged 65 and older with serious illness or multimorbidity, recruited from 10 primary care clinics across five Southern U.S. states. Readiness to engage in ACP was measured using a four-item scale assessing willingness to discuss and document care preferences. Predictor variables included religiosity, beliefs about death and dying, perceived discrimination and trust, provider communication, treatment preferences, and self-rated health. Mixed-effects regression models were used to examine predictors of ACP readiness in the overall sample and racial subgroups. RESULTS:Overall ACP readiness did not significantly differ by race. Across racial groups, greater comfort discussing death was associated with greater ACP readiness. Among African American participants, frequent religious service attendance was associated with higher ACP readiness (mean difference = 0.28; 95% CI: 0.08-0.47). Among White participants, a preference for pain relief over life extension in their current health status was associated with higher readiness (mean difference = 0.25; 95% CI: 0.05-0.45). Trust in providers, experiences of discrimination, and ratings of provider communication were not significantly associated with ACP readiness. CONCLUSION:Although mean readiness scores were similar, predictors varied by race. Religious attendance may facilitate ACP readiness among African American patients, while comfort-focused treatment preferences appear more influential among White patients. Culturally tailored strategies are needed to equitably support ACP engagement among older adults.
BACKGROUND: The American Thoracic Society (ATS) and the Society for Critical Care Medicine (SCCM) published a policy statement recommending communication skills to improve how clinicians support surrogate decision-makers in the ICU that was based on expert opinion and did not include patient or family input. RESEARCH QUESTION: What are the perspectives of Black individuals with prior experience as a decision-maker on the ATS and SCCM statement on shared decision-making in ICUs? STUDY DESIGN AND METHODS: We convened focus groups with Black individuals who have been surrogate decision-makers in the inpatient or ICU setting. Race-concordant, PhD-trained facilitators conducted the groups, which explored participants' prior experiences as surrogates, then presented a summary of the ATS and SCCM policy statement to elicit their opinions. We developed a codebook using an inductive thematic analysis approach, then double-coded interviews and resolved discrepancies by consensus. RESULTS: We conducted 3 focus groups via Zoom (Zoom Video Communications Inc) with 20 participants. Participants described negative experiences communicating with doctors, attributed to racial biases and deficiencies in clinicians' communication skills. Participants generally endorsed the recommendations, including the focus not only on decision support skills, but also on relationship building and emotional support. They offered numerous suggestions for improvement, including (1) broadening the recommendations to apply to the interprofessional clinical team, (2) being receptive and responsive to the communication priorities of families, (3) allowing family more time and space to process information and emotions, (4) presenting all medically reasonable treatment options, (5) centering the family's concept of patient values, rather than the clinicians', and (6) including the entire family in decision-making, if preferred. INTERPRETATION: Our results show that participants endorsed the main recommendations in the ATS and SCCM policy statement on shared decision-making in ICUs and highlighted numerous areas for refinement. Participants' perspectives should inform future recommendations to provide more equitable care to Black patients and their families.
BACKGROUND:Spirituality is vital to holistic patient care and should be proactively addressed by healthcare providers as unmet spiritual needs are a major source of suffering for patients living with chronic illnesses. However, spiritual concerns are seldom referenced by clinicians during disease-related treatment discussions, particularly for minority and under-resourced patients. This paper outlines a protocol for administering and evaluating a culturally-responsive spiritual care intervention conducted with chronically ill African Americans receiving care at a community safety net health service. METHODS:A total of 60 African American patients who have chronic conditions and are aged 50 or older will be recruited for this study and randomly assigned to either the intervention (spiritual care program delivered by a board-certified chaplain) or the control group. All participants will complete a baseline interview that encompasses demographic information, religiosity, spiritual well-being, quality of life, and perception of care. Follow-up surveys will be conducted 12 weeks post-baseline, and participants assigned to the intervention group will also undergo a semi-structured acceptability and feasibility interview. Effect size measures and bivariate tests will be used to compare pre- and post-test outcomes while the interviews will be analyzed using constant comparative and thematic analysis. DISCUSSION:Study findings will assess the feasibility and effectiveness of a culturally-responsive spiritual care intervention for under-resourced African American patients with chronic illnesses. Furthermore, the provision of spiritual care may help patients clarify their healthcare values and decision making priorities.
Acceptability and feasibility of a self-directed health priorities program for Southern older African Americans were assessed in a mixed-methods formative evaluation (NIH Stage 1a). The study explored patient and family caregiver (FCG) experiences with the “My Health Priorities” (MHP) web-based program, a component of the Patient Priorities Care Approach. Fifteen older African Americans (≥65 years, ≥2 chronic conditions) and their adult African American FCGs (≥18 years) from a southeastern U.S. primary care clinic participated. Thematic analysis of interviews and usability assessments via the System Usability Scale (SUS) were conducted. Patients generally found the program acceptable but faced navigation challenges on non-computer devices. Recommendations included culturally adapting avatars, optimizing mobile functionality, and providing strategies for patient-clinician interactions. Patients rated usability at 75.3 ± 14.6 (good), whereas FCGs rated it at 30.1 ± 4.3 (poor). Study measures took 30 minutes to complete, while the intervention took 60 minutes, with 81% of study measures completed. Findings suggest that web-based programs may be acceptable for African American patients and caregivers, but usability and cultural relevance require improvement. Differences in patient and caregiver usability ratings highlight the need for tailored design considerations.
Occupational performance challenges are common among breast cancer survivors (BCS). In a recent randomized controlled trial (RCT), our rehabilitation intervention catalyzed significantly greater improvements in occupational performance compared to an education-based control condition. To describe BCS’ activity priorities and examine what short-term goal characteristics (i.e., focus) and outcomes (i.e., attainment, satisfaction) predicted long-term occupational performance improvement. Post hoc analysis of intervention session data from an RCT. Content analysis was used to summarize participants’ short-term and long-term goals. Linear regressions were conducted to examine associations between weekly goal characteristics and outcomes and occupational performance improvement. Among 138 BCS, 119 (86.2%) set long-term goals focused on exercise. Self-reported satisfaction with weekly goal outcomes was the strongest predictor of occupational performance improvement (η p 2 = 0.14–0.17, p < .001). Satisfaction with short-term goal outcomes, regardless of goal focus or attainment, predicts long-term occupational performance improvement in the year following breast cancer treatment.
Patients with heart failure benefit from specialty palliative care but are often not evaluated for these services. The lack of standardized screening tools and limited nurse training for assessing palliative care needs are contributing factors. This quality improvement project aimed to improve the identification of unmet palliative care needs in patients with heart failure admitted to a progressive care unit by implementing a standardized nurse-administered palliative care screening tool. The nursing staff administered the Integrated Palliative Care Outcome Scale (IPOS) tool. The number of palliative consultations before project implementation was compared with those during the project. Spearman ρ was assessed for correlation between screening tool score and New York Heart Association (NYHA) heart failure class. Thirty-eight patients completed the screening tool. NYHA class was documented in 29% of patients. Among all patients, those categorized as NYHA III with heart failure with reduced ejection fraction demonstrated the highest need scores. Spearman ρ indicated a nonsignificant ( P > .05), very weak negative correlation between the IPOS scores and NYHA class ( r s = −0.18, P = .60). Implementing a nurse-administered screening tool effectively identified unmet palliative care needs among patients with heart failure with reduced ejection fraction and NYHA III. Despite low rates of palliative consults, standardization using IPOS could increase screening, contribute to institutional triggering palliative consultations, and improve awareness of unmet needs.
Background Intentional exploration, or elicitation, of patient and family values—who/what matters most—is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation. Objective The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period. Methods This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. Results Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. Conclusions Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.
OBJECTIVE:Despite advancements in heart failure (HF) diagnostics and treatment, many palliative care patients with HF often seek complementary and alternative medicine (CAM) to improve quality of life and address unmet physical and emotional needs. This study aimed to explore the prevalence and patterns of CAM use among HF patients in a large academic medical ambulatory HF clinic in Alabama. METHODS:This cross-sectional, descriptive study included HF patients from the University of Alabama at Birmingham HF clinic. Data collection involved CAM-related questions from the National Health Interview Survey, the Kansas City Cardiomyopathy Questionnaire, and sociodemographic variables. Descriptive statistics were computed for all study variables, and analyses were conducted using SPSS. RESULTS:Among 250 HF participants, 49 (19.6%) reported CAM use. The mean age of CAM users was 65 years (±14.76). Most CAM users were White (69%), male (63%), married or partnered (60%), had some college education (67%), and identified as Protestant (22%). The mean Kansas City Cardiomyopathy Questionnaire clinical summary score among CAM users was 54.48. Herbal products and dietary supplements were the most common CAM forms (57%). Of the CAM users, 53% discussed CAM with their healthcare providers, and 43% obtained CAM information from them. Regarding reasons for CAM use, 44.1% used it for pain relief, 29.4% for specific conditions, 20.6% for overall wellness, and 17.6% to complement conventional medicine; 15% cited multiple reasons. No significant sociodemographic predictors of CAM use were found. CONCLUSION:CAM prevalence among HF patients in this cohort was relatively low compared with other populations. Herbal products and dietary supplements were the most common forms of CAM used. Further research is needed to assess the safety and efficacy of CAM, particularly herbal products and dietary supplements, in patients with HF.
Rationale: The American Thoracic Society (ATS) and Society for Critical Care Medicine (SCCM) published a policy statement recommending communication skills to improve how clinicians support surrogate decision makers in the ICU, which was based on expert opinion.1 These recommendations have not been assessed by surrogate decision makers, including Black individuals, a group with well-documented disparities in health care. We sought to elicit the perspectives of Black individuals with prior experience as surrogates on the ATS/SCCM policy statement. Methods: We convened focus groups with individuals who have served as surrogate decision makers and identify as Black. Race concordant, PhD-trained facilitators conducted the focus groups, first exploring participants’ prior experiences as a surrogate, then presenting a summary of the core elements of the ATS/SCCM policy statement and eliciting their opinions about the recommendations. We used an inductive thematic analysis approach to develop the coding framework. We double coded interviews and resolved discrepancies by consensus. Results: We conducted three focus groups with a total of 20 participants via Zoom (mean age 51.7; 85% female) who served as surrogates for spouses (1), children (11), siblings (3), extended family (4), and others (1). Participants described negative experiences communicating with doctors attributed to racial biases and clinicians’ communication skills (e.g., seeming indifferent, unwilling or unable to fully engage with surrogates). Although participants broadly endorsed the key recommendations in the policy statement, they offered numerous suggestions to improve them (see Table 1) including 1) broadening the recommendations to apply to the whole interprofessional clinical team 2) being receptive and responsive to the communication priorities of families; 3) allowing family more time and space to process information and emotions; 4) presenting all medically reasonable treatment options; 5) centering the family's concept of what is best for the patient; 6) including the entire family in decision making, if preferred. Conclusions: Although participants generally endorsed the main recommendations in the ATS-SCCM policy statement on shared decision making in ICUs, they highlighted numerous areas for refinement, including increasing the focus on interprofessional collaboration to support families, allowing more time for processing information, centering family expertise, and presenting medically reasonable treatment options, rather than solely the clinicians’ preferred option. These perspectives from Black surrogates should inform future revisions to the ATS/SCCM policy recommendations and also to how clinicians support surrogates in ICUs. 1 Kon AA et al. Shared Decision Making in ICUs: An SCCM and ATS Policy Statement. Crit Care Med. 2016;44(1):188-201. doi:10.1097/CCM.0000000000001396
To evaluate the cultural acceptability and feasibility of the self-directed “My Health Priorities” (MHP) web-based program in older Southern African Americans (AAs) with multiple chronic conditions (MCCs) and their family caregivers (FCGs). A multi-method formative evaluation study (NIH Stage 1a) to explore patients’ and FCGs’ experiences with the MHP web-based program, a component of the patient priorities care approach. Interviews were analyzed using the constant comparative method and thematic analysis. Participants rated usability via the system usability scale (SUS) (scores range from 0 to 100). Sample characteristics were analyzed using SAS and SPSS. A primary care clinic in a southeastern U.S. academic medical center. Fifteen older AAs with MCCs (≥ 65 years old, diagnosed with ≥ 2 chronic conditions) and their adult AA FCGs (≥ 18 years old). Participants generally found the program acceptable but difficult to navigate on devices other than computers. Suggestions included redesigning the avatar for cultural relevance, optimizing functionality for mobile devices, and offering strategies to address challenging patient-clinician interactions. Patients rated usability at 75.31 ± 14.63 (good usability), while FCGs rated it at 30.13 ± 4.31 (indicating limited usability). Study measures required 30 min to complete, while the intervention took 60 min. Participants completed 81
BACKGROUND: Family caregivers play an increasing role in cancer treatment decision-making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. METHODS: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer-related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check-all-that-apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi-square and regression analyses assessed associations between bias and caregiver distress (GAD-2, PHQ-2). RESULTS: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer-related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non-conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD-2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6-2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4-5.3) compared to none. Similar results were found for high depression scores (PHQ-2 scores ≥ 3). CONCLUSIONS: Nearly half of caregivers involved in their care recipients' cancer-related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress.
Background: Women appear to be underrepresented in heart failure and palliative care research. Given this underrepresentation, their unique characteristics, needs, and outcomes require further investigation. Methods: A secondary analysis of baseline data of the Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers study, a randomized clinical trial of Deep South patients ≥50 years of age with advanced HF. Differences in sociodemographics and measures of quality of life and mood between female and male patients were examined using bivariate tests and effect-size measures. Results: Statistically significant gender differences were observed with females reporting poorer quality of life-The Kansas City Cardiomyopathy Measure (49.55 ± 20.04 vs. 55.37 ± 21.52, d = 0.28, p-adj = 0.01), Patient-Reported Outcome Measurement Information System (PROMIS) Global Mental Health (44 ± 8.02 vs. 46.53 ± 9.01, d = 0.30, p-adj = 0.007), and PROMIS Global Physical Health (37.37 ± 7.65 vs. 39.2 ± 8.20, d = 0.23, p-adj = 0.034) and Hospital Anxiety and Depression Scale anxiety (6.9 ± 4.38 vs. 4.72 ± 3.89, d = 0.53, p-adj = 0.003) compared with men at baseline. Conclusion: Further investigation of gender differences is necessary to improve outcomes and inform the refinement of PC-HF interventions for females.
Importance Following treatment, breast cancer survivors face challenges participating in valued activities. ObjectiveTo determine whether a telephone-based coaching rehabilitation intervention enhances activity participation in the year following breast cancer treatment. Design, Setting, and ParticipantsIn this multisite, single-blind randomized clinical trial (Optimizing Functional Recovery of Breast Cancer Survivors), recruitment occurred between August 28, 2019, and April 30, 2022. Data collection was completed by April 1, 2023. Participants were recruited from 2 cancer centers (Dartmouth College and the University of Alabama at Birmingham) and via social media advertisements. Women aged 18 years or older who had completed primary treatment for stage I to III breast cancer within 1 year and reported participation restrictions were eligible to participate. Randomization was stratified by site, treatment, and time since treatment. InterventionsThe intervention, delivered via telephone over 9 sessions, used behavioral activation and problem-solving principles to promote activity participation. The education-based attention control condition was delivered via telephone at matched intervals. Main Outcomes and MeasuresThe primary outcome was participation, assessed using 5 measures, including Patient-Reported Outcomes Measurement Information System (PROMIS) social participation-satisfaction measure. One individualized outcome allowed participants to specify activities for which they wanted to foster recovery. Outcomes were collected by telephone by blinded coordinators at baseline and at 8, 20, and 44 weeks. The individualized outcome was assessed at the first and last intervention and control session. Results Among 1996 patients identified, 303 were eligible and enrolled. Of these, 284 women (94%; mean [SD] age, 56.1 [10.2] years) completed baseline assessments and were randomized, and 81% or more of each group completed the final assessment with no adverse events. Of those who completed the final assessment, 118 of 114 (82%) were in the intervention group, and 113 of 140 (81%) were attention control participants. Between-group differences were not statistically significant for the main measures of PROMIS satisfaction (week 20: Cohen d, 0.1 [95% CI, -0.09 to 0.29] and week 44: Cohen d, -0.08 [95% CI, -0.27 to 0.11]) and ability (week 20: Cohen d, 0.15 [95% CI, -0.06 to 0.37] and week 44: Cohen d, -0.08 [95% CI, -0.27 to 0.11]). On the individualized outcome, intervention participants reported significantly greater improvements in activity satisfaction (Cohen d, 0.76 [95% CI, 0.48-1.02]) and performance (Cohen d, 0.60 [95% CI, 0.32-0.87]). Conclusions and Relevance In this randomized clinical trial, the intervention catalyzed greater improvements in self-selected activity participation and goal disengagement but did not otherwise accelerate recovery compared with the control condition. Future research should determine what intervention features may lead to the greatest reductions in participation restrictions and other measures that may detect functional recovery. Trial RegistrationClinicalTrials.gov Identifier: NCT03915548
Background Intentional exploration, or elicitation, of patient values (who and what matters most) in the context of left ventricular assist devices (LVADs) can assist in identifying health preferences and care priorities. Yet, the values elicitation experiences of individuals post LVAD-implantation have been understudied, particularly among historically minoritized African American (AA)/Black and rural-dwelling individuals. Understanding the facilitators and barriers to values discussions among individuals from these groups is critical to addressing disparities in outcomes and optimizing patient-centered decision-making. Objectives To identify facilitators and barriers to values discussions between patients with an LVAD, their family caregivers (FCGs), and the healthcare team. Methods Analysis of qualitative data from an ongoing convergent mixed methods study (January 2023-present) among AA/Black and rural-dwelling patients with an LVAD recruited from a large outpatient center in the U.S. South. Participants completed a semi-structured, in-person/telephone interview where questions were asked about their values elicitation experiences. Transcribed interviews were analyzed using a thematic analysis approach. Results Fourteen participants ages 30-69 were interviewed. Patients were predominantly non-Hispanic AA/Black (n=12, 86%), male (n=9, 64%), and urban-dwelling (n=10, 71%). Patients reported previous values discussions with their FCGs (n=14, 100%) and healthcare team (n=10, 71%). Facilitators to discussions with FCGs and the healthcare team included a perceived close relationship, sharing similar values (e.g., belief in a higher power), and patient motivation to discuss their values (e.g., assertive personality). Barriers to discussions with FCGs included grief over loss of previously enjoyable activities (e.g., inability to engage in hobbies), FCG distress, and lack of time (e.g., acute illness); barriers to discussions with the healthcare team included previous conflict, receiving mixed messages about the treatment plan, perceived lack of time (e.g., brief appointments), and seeing different providers each visit. Conclusions Qualitative analyses of an ongoing mixed methods study found that facilitators of values discussions included a perceived close relationship, sharing similar values, and patient motivation to discuss their values. Barriers included grief over loss of previously enjoyable activities, FCG distress, lack of time, previous conflict, receiving mixed messages about the treatment plan, and seeing different providers each visit. Generating a comprehensive understanding of the values elicitation experiences of patients and their FCGs is critical to the development of interventions aimed at increasing values discussions between patients, FCGs, and the healthcare team. Future work is needed to understand facilitators and barriers to values discussions from the clinician perspective.
Positive social support can predict health outcomes in populations that experience significant burdens, such as minority caregivers. The purpose of the current study was to detail the social network (SN) of 36 Black family caregivers (FCGs) for persons with memory problems (PWMP) and examine differences in SN support depending on FCG gender and relationship to the care recipient. Participants were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and the local community. FCGs were categorized into adult children (ACH), grandchildren and in-law children, and friends and other relatives. FCGs described the amount of adequate support they receive for different types of support from their SN. Female FCGs reported higher levels of support overall, with the largest effect sizes including social ( d = 0.63), emotional ( d = 0.64), and financial ( d = 0.38) support. The largest effect size comparison of caregiver relationship type was in social support, with the ACH group reporting the lowest levels of adequate social support compared to the other two groups ( d = 0.48). Findings suggest that different types of Black FCGs face unique challenges depending on their gender and familial relationship to the care recipient. [ Journal of Gerontological Nursing, 50 (1), 22–29.]
Over the past decade, the Patient-Centered Outcomes Research Institute (PCORI) funded multiple large-scale, comparative effectiveness clinical trials evaluating palliative care and advance care planning interventions. These are complex multicomponent interventions that need robust but flexible fidelity monitoring. Fidelity is necessary to maintain both internal and external validity within palliative care intervention research and to ultimately evaluate the real-world impact of high-quality interventions. Different trials not only took varying approaches to fidelity monitoring but also uncovered both unique and common challenges and facilitators. This article summarizes 8 of these trials and highlights approaches, adaptations, barriers, and facilitators for intervention fidelity monitoring. Identifying and delivering core elements while simultaneously allowing adaptations of noncore elements is a vital part of fidelity monitoring. Dissemination of such experiences can inform both future palliative care research as well as ongoing implementation of palliative care and advance care planning interventions across diverse clinical practices. Adoption of rigorous intervention fidelity methods is critical to advancing the science and reproducibility of palliative care interventions.