Advance Care Planning Facilitator Research Articles

Situation, Education, Innovation, and Recommendation: A Large-Scale Systematic Review of Advance Care Planning in the Age of COVID-19.

The COVID-19 pandemic highlighted the need for advance care planning (ACP) as a way to help mitigate the various care concerns that accompanied the healthcare crisis. However, unique obstacles to typical ACP practice necessitated the need for guidance and innovation to help facilitate these vital conversations. The aim of this systematic review was to identify the various ACP barriers and facilitators that arose during the pandemic and determine how ACP practice was affected across different contexts and among different populations. This systematic review (PROSPERO registration number: CRD42022359092), which adheres to the PRISMA guidelines for reporting systematic reviews, examined studies on ACP in the context of the COVID-19 pandemic. The review involved searches of five databases, including MEDLINE and Embase. Of the 843 identified studies, 115 met the inclusion criteria. The extracted ACP barriers and facilitators were codified and quantified. The most frequently occurring ACP barrier codes were: Social distancing measures and visitation restrictions, Uncertainty surrounding the COVID-19 prognosis, and Technological/Telehealth barriers. The most frequently occurring ACP facilitator codes were the following: Telehealth/virtual ACP platforms, Training for clinicians, and Care team collaboration. Identifying the ACP barriers and facilitators is essential for developing effective, resilient ACP promotion strategies and improving its delivery, accessibility, and acceptability.

CONDITIONS ASSOCIATED WITH SUCCESSFUL IMPLEMENTATION OF AN ADVANCE CARE PLANNING INTERVENTION IN NURSING HOMES

Abstract Implementing evidence-based interventions in nursing homes is challenging in part because clinical trials requiring a controlled experimental environment are difficult to sustain. In contrast, pragmatic clinical trials develop and evaluate evidence-based interventions in the “real world” with the goal of streamlining implementation after study completion. However, there is minimal information available identifying conditions associated with successful implementation of pragmatic interventions in the nursing home setting. The “Aligning Patient Preferences - a Role Offering Alzheimer’s patients, Caregivers, and Healthcare Providers Education and Support” (APPROACHES) project is a pragmatic trial designed to test and evaluate a staff-led advance care planning (ACP) intervention for residents with ADRD in 131 nursing homes (64 intervention, 67 control) between September 1, 2021 and August 31, 2022. ACP Specialists received training on ACP facilitation and implementation of the ACP program in the facility. Twenty of 65 (31%) sites successfully implemented the APPROACHES intervention and had > 75% of residents with documented ACP conversations. Using configurational analysis, we found two solutions directly linked with successful pragmatic implementation: (1) no executive director turnover during the observation period combined with site participation in monthly intervention support calls with ACP staff at other facilities; and (2) higher rates of hospitalization (3.96 – 7.2 per 1000 resident days) combined with a low number of certified beds. Findings suggest that leadership stability and engagement with peers were essential drivers of successful implementation. Having greater improvement opportunities as well as a more manageable caseload for the ACP Specialist may also help explain successful implementation.

PRAGMATIC IMPLEMENTATION OF AN ADVANCE CARE PLANNING INITIATIVE: MOVING KNOWLEDGE INTO ACTION

Abstract Primary care is an important setting for patient and family-centered communication with older adults given the high frequency of interactions, longitudinal trusted relationships, and patient preferences for advance care planning (ACP). Increasing ACP conversations and documentation of advance directives in primary care is a focus of quality-of-care initiatives and is particularly relevant for older adults, including those with dementia. The SHARING Choices ACP program evaluation was designed to examine the fidelity of implementation with the two partner health systems. SHARING Choices includes a mailing (introductory letter, an agenda-setting checklist, a blank advance directive, and information about shared-portal access for family) sent two weeks prior to scheduled primary care visits for patients aged 65 and above along with access to an ACP facilitator in each practice. Embedding SHARING Choices within primary care practices involved a multi-step process, including onboarding of health system partners, facilitator identification and training, tailored onboarding, practice champion engagement, and practice orientation and ongoing support. Of 23,220 candidate patients, 17,931 outreach attempts by phone (77.9%) and the patient portal (22.1%) were made by ACP facilitators and 645 conversations occurred. Most conversations (94.8%) were less than 45 minutes in duration. Study findings reinforce the value of adaptable study design; co-designing workflow adaptations with frontline staff; adapting implementation processes to fit the operational and organizational priorities of the health system.

ADVANCE CARE PLANNING FIDELITY TOOL IN THE CONTEXT OF COGNITIVE IMPAIRMENT: THE SHARE TRIAL

Abstract 2. Conducting high-quality advance care planning (ACP) conversations with persons living with ADRD and their family members is inherently challenging. Differing levels of cognitive function, judgment, ability to engage, and care partner involvement adds to the complexity of such ACP conversations, necessitating flexible fidelity monitoring to accommodate contextual factors. This presentation will focus on the process of measuring ACP fidelity. The SHARE ACP fidelity checklist was developed to measure the protocol adherence during ACP meetings, monitor for areas in which ACP facilitators may require re-training or additional support, and to inform analyses of the impact of the overall exposure to the study intervention. The fidelity checklist items are organized into three overarching domains: Meeting Set-Up, ACP Meeting Topics, and Facilitator Communication Skills. For the present study, a fidelity adjudication team from a pool of 7 raters, listened to and independently rated recorded conversations for protocol adherence. Each checklist item is scored ranging from 0 to 2 (0=not done; 1=needs improvement; or 2=effective) with higher scores indicating greater adherence. Fidelity ratings tended to improve over time, suggesting a facilitator experience effect. The goal to achieve an overall fidelity rating of ≥80% was met in 63% of dyad conversations. Based on subscale scores, project targets were most frequently met on the Communication Skills subscale and less frequently accomplished on the Meeting Set Up subscale. Despite some challenges, preliminary assessments of SHARE intervention fidelity appear promising, and evidence suggests the fidelity checklist is both valid and reliable.

EXPLORATION OF PREPAREDNESS FOR MEDICAL DECISION MAKING FOR FAMILY CAREGIVERS OF PEOPLE WITH DEMENTIA

Abstract As dementia progresses, many family caregivers of people with dementia (PWD) often experience increasing demands of making medical decisions for their loved ones and feel unprepared, causing severe psychological distress. This presentation explores what factors influence preparedness level of family caregivers in medical decision-making for PWD. As part of a larger two-group randomized trial in which 273 PWD-family caregiver dyads received either a control protocol or a multi-component communication intervention including advance care planning (ACP) facilitation, this qualitative study used thematic analysis methods to analyze 10 transcripts resulting from audio-recorded and transcribed ACP conversations with an ACP facilitator, PWD, and family caregivers. Interview duration was over 30 minutes. The major themes identified were: (1) knowledge about PWD’s treatment preferences, (2) experience with death and dying, (3) previous decision-making involvement, and (4) spiritual beliefs. Many family caregivers found ACP conversations with PWD about their goals of care to be beneficial in improving their confidence in making medical decisions. A few participants also reported witnessing a loved one’s suffering at the end of life or having made care decisions for family before helped them to initiate conversations with PWD about medical wishes, thus enhanced readiness for decision making. Lastly, few caregivers reported belief in God would help them make the “right decisions”. Preliminary results highlight that caregivers’ understanding of PWD’s treatment preferences helps to prepare family caregivers for decision-making, underlining the need for early and culturally appropriate ACP conversations among residents, caregivers, and clinicians.

LIFE-COURSE AND CONTEXTUAL FACTORS OF ADVANCE CARE PLANNING AMONG OLDER ADULTS WITH LIMITED INCOME

Abstract Background Cumulative disadvantage across the lifespan can lead to income, health, and advance care planning (ACP) disparities, resulting in increased caregiver decisional distress and reduced healthcare equity during times of cognitive incapacity. ACP is the process of patient and familial learning, communication, and documentation of life-sustaining care and quality of life preferences after personal reflection, but ACP rates remain lower among older adults with limited income. To better understand how life-course factors influence these low ACP rates, we aimed to explore participant perceptions of healthcare and ACP barriers and facilitators through different life stages. Methods We sampled older adults (aged 50+) with limited income from six community-based sites (N=20). Qualitative descriptive design was utilized to perform semi-structured, in-person interviews. Results Themes emerged from the inductive inclusion of in-vivo codes and the deductive application of the Cumulative Disadvantage Theory. Mean age: 64.8 years old (SD: 6.8); 11 participants identified as female (55.0%); 16 identified as Black/African American (80.0%). Four themes emerged: 1) structural, life-stage, 2) social stressors and resources, 3) individual stress responses and 4) ACP readiness. Participants’ perceptions denoted that proactive planning inequities among older adults with limited income result from the dynamic interplay of multi-dimensional stressors, protective factors, and personal stress responses. Implications: Identified themes serve as a conceptual basis for future intervention development that is responsive to traumatic life-course experiences and supportive of building ACP resilience (i.e., adapting to ACP stress and actively planning for times of cognitive incapacity), as well as policy and practice implications.

PERCEIVED BARRIERS AND SOCIOCULTURAL FACTORS OF ADVANCE CARE PLANNING AMONG CHINESE AMERICAN OLDER ADULTS

Abstract Despite documented benefits of advance care planning (ACP), persistent racial and ethnic disparities exist in ACP engagement. This study, guided by a social ecological model, examined perceived barriers and sociocultural factors associated with informal ACP conversations among Chinese American older adults. A purposive sample of 281 community-dwelling older Chinese Americans aged 55 years or older in Arizona and Maryland completed a survey in 2018. The average age of participants was 77.8 (SD = 9.4) and the average number of years living in the U.S. was 24.9 years (SD = 13.4). Most participants were first-generation immigrants (94.7%) and reported Chinese as their primary language (91.8%). About 26.5% of participants had ACP conversations with family. Hierarchical logistic regression results suggest that more perceived barriers were associated with lower odds of ACP conversations (OR = 0.87, p < 0.01). Sociocultural factors were associated with greater odds of ACP conversations, including more years in the U.S. (OR = 1.04, p = 0.02) and English language proficiency (OR = 11.85, p = 0.02). Social support had a significant moderation effect (b = -.01, p < 0.01), indicating a larger effect of perceived barriers on ACP conversations among those with lower social support. Findings highlighted the importance of language services, translated informational materials, and social support in facilitating ACP discussions among Chinese American older adults. Community-based ACP facilitators who have both language skills and cultural competence may be particularly beneficial in engaging this population. Effective ways to reduce barriers to ACP at various levels are needed.

Primary Care Physicians' and Hospitalists' Experience with Advance Care Planning with South Asian Canadian Older Adults before and during COVID-19.

Few older adults discuss their end-of-life care wishes with their physician, and even fewer minorities do this. We explored physicians' experience with advance care planning (ACP) including the barriers/facilitating factors encountered when initiating/conducting ACP discussions with South Asians (SA), one of Canada's largest minorities. Eleven primary care physicians (PC) and 11 hospitalists with ≥ 15 per cent SA patients ≥ 55 years of age were interviewed: 10 in 2020, 12 in 2021. Thematic analysis of transcripts indicated that cultural and communication barriers, physician's specialization, SA older adults' lack of ACP awareness, and decision-making deference to family and physicians were barriers to ACP discussions. Although the COVID-19 pandemic impacted physicians' practices, contrary to our hypothesis most reported no change in frequency of ACP discussions. Although ACP discussions were viewed as best conducted by PC physicians, only 55 per cent had ACP training and only 64 per cent had used ACP tools. Training in ACP facilitation, concerning ACP tool usage, and training in patient-physician communication are recommended.

Advance Care Planning in Germany

Advance Care Planning (ACP) defined as a comprehensive concept requiring a cultural change following implementation at the individual, institutional and regional level in order to achieve care consistency with care preferences when individuals are incapable of participating in critical decisions was first implemented in two regional projects (LIMITS and beizeiten begleiten, North Rhine Westphalia) in Germany in the 2000s. Based on the positive evaluation of beizeiten begleiten, legislation of 2015 (§ 132g, Social Code Book V) allows nursing homes and care homes for persons with disabilities to offer qualified ACP facilitation covered by the statutory health insurance. However, trainers for ACP facilitators need no specific qualification, and the training program for ACP facilitators is only broadly defined, which resulted in great heterogeneity of ACP facilitator qualifications. Furthermore, neither the institutional nor the regional implementation are sufficiently considered in this legislation, i.e. essential components of a successful implementation of ACP are missing. Nevertheless, a growing number of initiatives, research projects and a professional national society for ACP, engage in approaches to advance institutional and regional implementation, and to offer ACP to other target groups beyond the legal framework.

Barriers to advance care planning among patients with advanced serious illnesses: A national survey of health-care professionals in Singapore.

To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients' documented preferences. We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences. Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient's refusal to engage in ACP conversations and family experiencing difficulty in accepting patient's poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients' care) as barriers to providing care consistent with preferences. Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.

Effectiveness of a facilitation programme using a mobile application for initiating advance care planning discussions between patients with advanced cancer and healthcare providers: protocol for a randomised controlled trial (J-SUPPORT 2104)

IntroductionTimely implementation of the discussion process of advance care planning (ACP) is recommended. The communication attitude of healthcare providers is critical in ACP facilitation; thus, improving their communication attitudes may...

A model for community-led peer-facilitated advance care planning workshops for the public.

The core to successful advance care planning (ACP) facilitation is helping people determine their values, beliefs and wishes, and understand substitute decision-making. Recognizing the potential for community members to support public awareness and education we developed a model of ACP education, whereby peer facilitators associated with community organizations host workshops that educate and assist members of the public with ACP. Describe the development and evaluation of the model for community-led peer-facilitated ACP workshops for the public. Descriptive mixed methods. A training curriculum and program model were co-developed with two community organizations that had been successful in delivering ACP workshops independently in their communities. Herein we describe a mixed-methods evaluation of three cycles of implementation and improvement of the model. The model centers on three key concepts; the right content (based around three steps Think, Talk, Plan), the right facilitator, and the right approach. A suite of tools was designed to support the three groups involved in the delivery of the ACP workshops: the public participants, the peer facilitators, and the community-based organizations. The peer-facilitator training addresses the facilitator's learning needs of ACP content knowledge, facilitation skills, and understanding change behavior. Training evaluation data from 106 facilitators confirmed that the curriculum prepared them to facilitate the workshops. Qualitative data revealed that support from organizations with established reputations in their community is critical, with mentoring from more experienced facilitators beneficial. Our model demonstrates the potential of community-led, peer-facilitated ACP initiatives to enhance the capacity of community to upstream ACP conversations. Reaching a broader audience and creating a supportive, inclusive environment for individuals to comfortably learn about ACP can drive the much-needed culture shift to normalize ACP. Meaningful community engagement, empowerment, and partnerships are essential for the successful development and widespread impact of these initiatives.

ADAPTING PRIMARY CARE WORKFLOWS TO PROMOTE ADVANCE CARE PLANNING WITH AN EMPHASIS ON A DEDICATED ACP FACILITATOR

Abstract The COVID-19 pandemic has sharpened attention regarding the need to proactively plan for a future medical crisis. Advance Care Planning (ACP) has emerged in the last 30 years as a potential way to improve individuals’ end-of-life care by ensuring that patients explore and communicate personal values, goals, and preferences regarding future medical care to surrogate decision makers and medical providers. Elevating ACP as a core function of direct patient care, the University of Southern Indiana’s (USI) Geriatric Workforce Enhancement Program (GWEP) embedded a multi-modal ACP initiative in a primary care clinic, anchored by the Medicare Annual Wellness Visit (AWV). Within this initiative, the role of a dedicated ACP Facilitator embedded in the practice is highlighted to promote and bill (Medicare CPT codes 99494, 99498) for ACP conversations. The addition of an ACP Facilitator (who is a licensed clinical social worker) as part of the primary care team complements the efforts of the providers to focus on What Matters most to patients. This is particularly important to patients with serious illness. This presentation will summarize the re-alignment efforts of the primary care clinic to prioritize ACP conversations for older adults, amounting to 10,000 visits per year.

Challenges in providing end-of-life care consistent with documented patient preferences.

Providing end-of-life care consistent with patient preferences is a major goal for advance care planning (ACP) programs. Despite the promise, many trials have failed to show that ACP improves patients' likelihood of receiving end-of-life care consistent with preferences. The reasons and challenges to facilitating EOL care consistent with patients' documented ACP preferences remain unclear. Using data from Singapore's national ACP program evaluation, we aimed to understand health care professionals' (HCPs) perceived challenges in facilitating end-of-life care consistent with patients' documented ACP preferences. We conducted 21 focus group discussions and 1 in-depth interview with HCPs trained in ACP facilitation and advocacy and involved in national ACP program implementation within public hospitals, public primary care clinics and nursing homes in Singapore. Data collection was stratified based on HCPs' role within the ACP program (ACP leads/champions, ACP facilitators, nursing home heads/ACP administrative staff) and type of institution (hospital, primary care clinic and nursing home). Each discussion included 1 to 8 participants. Discussions were audio recorded, transcribed verbatim and checked for accuracy. We analysed the data using thematic analysis framework in Nvivo 11. A total of 107 participants attended one of the discussions of which more than a third (35%) were physicians. We conceptualized five themes describing the challenges in implementing end-of-life care consistent with patients' documented ACP preferences: (I) conflict between honouring preference for comfort care and extending life; (II) ACP not reflecting patients' changing preferences or medical condition; (III) lack of health system resources to support and honour patient preferences; (IV) barriers to retrieval of ACP documents; and (V) rigidity of ACP documentation. Although providing end-of-life care consistent with preferences may not always be feasible, future ACP programs should involve physicians and families for ongoing conversations, frequently update patients' ACP documents, involve clear and well-resourced plans for implementing patients' preferences, and incorporate flexible electronic systems to capture ongoing ACP conversations.

Feasibility and acceptability of advance care planning facilitated by nonphysician clinicians in Japanese primary care: Implementation pilot study.

Implementation of advance care planning (ACP) is urgently needed in Japan, which is one of the most aging countries. This study tested the feasibility and acceptability of ACP facilitated by nonphysician clinicians, and identified barriers and enablers to implementing ACP into Japanese primary care. We trained 10 nonphysician clinicians (seven registered nurses, two medical social workers, and one care manager) in four primary care clinics as ACP facilitators. From April to June 2019, the trained facilitators had 19 ACP conversations with their patients. We conducted semistructured interviews and surveys regarding satisfaction and appropriateness of the ACP with patients, family members, ACP facilitators, and primary care physicians (PCPs) regarding their perceptions about ACP facilitated by nonphysician clinicians. Survey data were analyzed using descriptive statistics, and interviews were analyzed using a qualitative content analysis approach. Majority of patients (75%) and family members (71%) were satisfied with ACP facilitated by nonphysician clinicians. In 71%, ACP facilitators and PCPs thought their ACP facilitation was appropriate and acceptable. Patients stated that they felt comfortable having ACP conversations with nonphysician clinicians. Identified barriers and enablers for ACP included: time restraints, size and organization of the clinics, settings for ACP conversations (ACP at the patient's home), team collaboration, and use of existing system to trigger ACP. Advance care planning facilitated by nonphysician clinicians was feasible and acceptable in Japanese primary care. Further studies are needed to explore strategies to overcome the barriers and enhance the enablers identified in this study.

Effectiveness of a complex regional advance care planning intervention to improve care consistency with care preferences: study protocol for a multi-center, cluster-randomized controlled trial focusing on nursing home residents (BEVOR trial)

BackgroundAccording to recent legislation, facilitated advance care planning (ACP) for nursing home (NH) residents is covered by German sickness funds. However, the effects of ACP on patient-relevant outcomes have not been studied in Germany yet. This study investigates whether implementing a complex regional ACP intervention improves care consistency with care preferences in NH residents.MethodsThis is a parallel-group cluster-randomized controlled trial (cRCT) with 48 NHs (≈ 3840 resident beds) between 09/2019 and 02/2023. The intervention group will receive a complex, regional ACP intervention aiming at sustainable systems redesign at all levels (individual, institutional, regional). The intervention comprises comprehensive training of ACP facilitators, implementation of reliable ACP processes, organizational development in the NH and other relevant institutions of the regional healthcare system, and education of health professionals caring for the residents. Control group NHs will deliver care as usual.Primary outcome is the hospitalization rate during the 12-months observation period. Secondary outcomes include the rate of residents whose preferences were known and honored in potentially life-threatening events, hospital days, index treatments like resuscitation and artificial ventilation, advance directives, quality of life, psychological burden on bereaved families, and costs of care.The NHs will provide anonymous, aggregated data of all their residents on the primary outcome and several secondary outcomes (data collection 1). For residents who have given informed consent, we will evaluate care consistency with care preferences and further secondary outcomes, based on chart reviews and short interviews with residents, surrogates, and carers (data collection 2). Process evaluation will aim to explain barriers and facilitators, economic evaluation the cost implications.DiscussionThis study has the potential for high-quality evidence on the effects of a complex regional ACP intervention on NH residents, their families and surrogates, NH staff, and health care utilization in Germany. It is the first cRCT investigating a comprehensive regional ACP intervention that aims at improving patient-relevant clinical outcomes, addressing and educating multiple institutions and health care providers, besides qualification of ACP facilitators. Thereby, it can generate evidence on the potential of ACP to effectively promote patient-centered care in the vulnerable population of frail and often chronically ill elderly.Trial registrationClinicalTrials.gov ID NCT04333303. Registered 30 March 2020.

Nurses' perspectives on their potential role in advance care planning in home care: A qualitative study

Nurses' perspectives on their potential role in advance care planning in home care: A qualitative study Abstract. Background: Advance Care Planning (ACP) in long-term care in Germany has been identified as a potential area of nurses' responsibility. In the StAdPlan study (DRKS0016886), an ACP intervention in outpatient care was implemented and evaluated: Trained nurses conducted ACP conversations with patients. A comprehensive process evaluation was part of the study. Aim: A partial result of the process evaluation was analysing the perspective of nurses on their potential role as ACP facilitators for outpatients. Methods: Semi-structured interviews with nursing professionals and nursing service managers (n = 42) were carried out prior to the implementation of the ACP intervention. A qualitative content analysis of the recorded interviews was performed. Results: Participants described the importance of ACP in outpatient care, their personal motivation and competence as well as necessary contextual conditions. Nursing professionals are motivated to offer ACP to patients to be able to care for them according to their wishes. For effective ACP conversations, nurse professionals considered in-depth knowledge of ACP, conversational skills and sufficient time resources as necessary. ACP consultations can be a suitable field of action for nurses as they have access and an established relationship of trust with patients. Conclusions: Under certain conditions, nurses' role in offering guidance on ACP in outpatient care was seen as feasible and beneficial. Prerequisites for implementation are financial resources and training for nurses for this service.

Advance Care Planning Experiences Among Sexual and Gender Minority People

Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. To increase understanding of barriers and facilitators of ACP facing SGM individuals. This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Self-identified SGM. The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Racial and Ethnic Differences in Informal and Formal Advance Care Planning Among U.S. Older Adults.

To examine advance care planning (ACP) trends among an increasingly diverse aging population, we compared informal and formal ACP use by race/ethnicity among U.S. older adults (≤65years). We used Health and Retirement Study data (2012-2018) to assess relationships between race/ethnicity and ACP type (i.e., no ACP, informal ACP only, formal ACP only, or both ACP types). We reported adjusted risk ratios with 95% confidence intervals. Non-Hispanic Black and Hispanic respondents were 1.77 (1.60, 1.96) and 1.76 (1.55, 1.99) times as likely, respectively, to report no ACP compared to non-Hispanic White respondents. Non-Hispanic Black and Hispanic respondents were 0.74 (0.71, 0.78) and 0.74 (0.69, 0.80) times as likely, respectively, to report using both ACP types as non-Hispanic White respondents. Racial/ethnic differences in ACP persist after controlling for a variety of barriers to and facilitators of ACP which may contribute to disparities in end-of-life care.

Contextual factors influencing advance care planning in home care: process evaluation of the cluster-randomised controlled trial STADPLAN

BackgroundThe STADPLAN study is a cluster-randomised controlled trial including 27 home care services in Germany. It assesses the effect of an advance care planning (ACP) intervention delivered by trained nurses to older care-dependent patients. Patients received two ACP conversations and an information brochure. Nurses were educated through a two-day programme and topic guides structuring the conversations.Objectives of the process evaluation were to determine: [1] whether the intervention was implemented as planned, [2] which change mechanisms were observed, [3] whether targeted process outcomes were achieved and [4] in which way contextual factors influenced the implementation process.MethodsThe process evaluation is based on a mixed methods approach following the recommendations of the UK-MRC framework for the development and evaluation of complex interventions. Qualitative and quantitative assessments were developed and analysed guided by a logic model comprising intervention, participants, mechanisms of change and context factors. The results of the main trial will be published elsewhere.ResultsEducational programme and topic guides were mostly implemented as planned and resulted in motivation, knowledge, and perceived competencies to facilitate ACP conversations in nurses. Deviances in the performance of ACP conversations indicated patients’ varied individual needs, but also obstacles like reluctance of patients and caregivers to participate actively and time constraints of nurse facilitators. Patients and caregivers reported increased awareness of ACP, planning and other activities indicating that targeted process outcomes could be achieved. The relevance of multifaceted contextual factors acting as barriers or facilitators for the engagement in ACP interventions on the individual, organisational and macro level was evident.ConclusionsThe process evaluation elicits obstacles and achievements of the ACP intervention. The logic model organised a plethora of mixed methods data into a holistic picture of multifaceted results. Nurses as ACP facilitators in home care can fulfil a crucial initiating role based on a trusting relationship with their patients. To support older care-dependent people’s ACP engagement, access should be simplified.Furthermore, education for nurse facilitators and sufficient resources for service provision are needed. Independent of monetary reimbursement, healthcare providers must respect patients’ choice for or against any ACP intervention.Ethics and trial registrationApproved by the Ethics Committees of Martin Luther University Halle-Wittenberg (Ref.-No. 2019–045), Carl von Ossietzky University Oldenburg (Ref.-No. 2019–024), and University of Lübeck (Ref.-No. 19–080).German Clinical Trials Register: DRKS00016886. Registered retrospectively 04/06/2019, first participant included 29/05/2019.