Use of the supportive and palliative care indicators tool (SPICT™) for end-of-life discussions: a scoping review.

BACKGROUND: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. AIM: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. METHODS: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. RESULTS: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. CONCLUSIONS: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

Co-designing strategies to improve advance care planning among people from culturally and linguistically diverse backgrounds with cancer: iCanCarePlan study protocol.

BACKGROUND: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. METHOD: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. DISCUSSION: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths.

BACKGROUND: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital. METHODS: This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0-24 in an academic tertiary children's hospital in South Korea. Participants were categorized into before (2011-2013; pre-period) and after (2017-2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients. RESULTS: We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease. CONCLUSIONS: SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients' and their families' values and preferences.

A scoping review of guidelines and frameworks for advance care planning for adolescents and young adults with life-limiting or life-threatening conditions.

BACKGROUND: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. AIM: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. DESIGN: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. DATA SOURCES: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. RESULTS: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. CONCLUSIONS: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group.

Advance Care Planning Experiences Among Sexual and Gender Minority People.

Importance: 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. Objectives: To increase understanding of barriers and facilitators of ACP facing SGM individuals. Design, Setting, and Participants: 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. Exposures: Self-identified SGM. Main Outcomes and Measures: 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. Results: 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. Conclusions and Relevance: 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.

Advance Care Planning Preferences for Adolescents With Cardiac Disease.

BACKGROUND AND OBJECTIVES: Adolescents with cardiac disease are at risk for life-changing complications and premature death. The importance of advance care planning (ACP) in adults with congenital heart disease and in pediatric patients with HIV and cancer has been demonstrated. ACP preferences of adolescents with heart disease have not been evaluated. We describe ACP preferences of adolescents with heart disease and compare with those of their caregivers. METHODS: Outpatient adolescents aged 12 to 18 years with heart failure, cardiomyopathy, heart transplantation, or who were at risk for cardiomyopathy, as well as their caregivers, completed self-administered questionnaires which evaluated participants' opinions regarding content and timing of ACP discussions, preferences for end-of-life communication, and emotional responses to ACP. RESULTS: Seventy-eight adolescents and 69 caregivers participated, forming 62 adolescent-caregiver dyads. Adolescents and caregivers reported that adolescent ACP discussions should occur early in the disease course (75% and 61%, respectively). Adolescents (92%) wanted to be told about terminal prognosis, whereas only 43% of caregivers wanted the doctor to tell their child this information. Most adolescents (72%) and caregivers (67%) anticipated that discussing ACP would make the adolescent feel relieved the medical team knew their wishes. Most caregivers (61%) believed that adolescents would feel stress associated with ACP discussions, whereas only 31% of adolescents anticipated this. CONCLUSIONS: Adolescents and their caregivers agree that ACP should occur early in disease course. There are discrepancies regarding communication of prognosis and perceived adolescent stress related to ACP discussions. Facilitated conversations between patient, caregiver, and providers may align goals of care and communication preferences.

The survival time of end-of-life home care patients in Fukui prefecture, Japan: A retrospective observational study.

ABSTRACT: End-of-life advance care planning (ACP) has become increasingly important in home care setting. In facilitating ACP discussion in home care setting, accurate understanding of patients' survival would be beneficial because it would facilitate healthcare professionals to individualize ACP discussion. However, little is known about survival outcome of home care patients. This study aimed to clarify the outcome of patients and identify factors to better predict the survival outcome of home care patients with the focus on patients' primary diseases.We conducted a retrospective analysis using data from 277 patients managed at a home care clinic in Japan and first treated in 2017 or 2018. Data regarding sociodemographic and clinical characteristics, and clinical outcome on December 31, 2019 were extracted. Using Kaplan-Meier product-limit method, we estimated the overall 30 days, 90 days, 1 year, and 3 year survival probabilities among the entire patients and their differences according to their primary disease. We also evaluated whether outcomes differed based on the primary disease or other factors using the hazard ratio and Cox proportional hazards regression.The overall survival probability was 82.5% at 30 days, 67.8% at 90 days, 52.7% at 1 year, and 39.1% at 3 years. The survival rates at 30 days, 90 days, 1 year, and 3 years were 64.6%, 33.4%, 9.5%, and 4.1% among cancer patients; 91.9%, 86.4%, 78.1%, and 47.0% among dementia patients; and 91.9%, 86.4%, 78.1%, and 47.0% among patients with other nervous and cerebrovascular diseases, respectively. Cox proportional hazard regression clarified that cancer patients (hazard ratio 6.53 [95% CI 4.16-10.28]) and older adults (hazard ratio 1.01 [95% CI 1.00-1.02]) were significantly more likely to die than dementia patients and young patients, respectively.Primary disease had a significant influence on the prediction of survival time and could be a useful indicator to individualize ACP in home care setting.

United States Best Practice Guidelines for Primary Palliative Care in the Emergency Department.

The growing palliative care needs of emergency department (ED) patients in the United States have motivated the development of ED primary palliative care principles. An expert panel convened to develop best practice guidelines for ED primary palliative care to help guide frontline ED clinicians based on available evidence and consensus opinion of the panel. Results include recommendations for screening and assessment of palliative care needs, ED management of palliative care needs, goals of care conversations, ED palliative care and hospice consults, and transitions of care.

Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications.

BACKGROUND: Legally recognized advance directives (ADs) have to be signed by the person to whom the decisions apply. In practice, however, there are also ADs written and signed by legal proxies (surrogates) on behalf of patients who lack decision-making capacity. Given their practical relevance and substantial ethical and legal implications, ADs by proxy (AD-Ps) have received surprisingly little scientific attention so far. OBJECTIVES: To study the form, content, validity, and applicability of AD-Ps among German nursing home residents and develop policy implications. METHODS: Secondary analysis of two independent cross-sectional studies in three German cities, comprising 21 nursing homes and 1528 residents. The identified AD-Ps were analyzed in parallel by three independent raters. Inter-rater agreement was measured using free-marginal multi-rater kappa statistics. RESULTS: Altogether, 46 AD-Ps were identified and pooled for analysis. On average (range), AD-Ps were 1 (1-7) year(s) old, 0.5 (0.25-4) pages long, signed by 1 (0-5) person, with evidence of legal proxy involvement in 35%, and signed by a physician in 20% of cases. Almost all the AD-Ps reviewed aimed to limit life-sustaining treatment (LST), but had widely varying content and ethical justifications, including references to earlier statements (30%) or actual behavior (11%). The most frequent explicit directives were: do-not-hospitalize (67%), do-not-tube-feed (37%), do-not-attempt-resuscitation (20%), and the general exclusion of any LST (28%). Inter-rater agreement was mostly moderate (kappa ≥0.6) or strong (kappa ≥0.8). CONCLUSIONS: Although AD-Ps are an empirical reality in German nursing homes, formal standards for such directives are lacking and their ethical justification based on substituted judgment or best interest standard often remains unclear. A qualified advance care planning process and corresponding documentation are required in order to safeguard the appropriate use of this important instrument and ensure adherence to ethico-legal standards.

Advance care planning for patients with COVID-19: a communication guide.

In view of the high morbidity and mortality associated with COVID-19, early and honest conversations with patients about goals of care are vital. Advance care planning in its traditional manner may be difficult to achieve given the unpredictability of the disease trajectory. Despite this, it is crucial that patients' care wishes are explored as this will help prevent inappropriate admissions to hospital and to critical care, improve symptom control and advocate for patient choice. This article provides practical tips on how to translate decisions around treatment escalation plans into conversations, both face-to-face and over the phone, in a sensitive and compassionate manner. Care planning conversations for patients with COVID-19 should be individualised and actively involve the patient. Focusing on goals of care rather than ceilings of treatment can help to alleviate anxiety around these conversations and will remind patients that their care will never cease. Using a framework such as the 'SPIKES' mnemonic can help to structure this conversation. Verbally conveying empathy will be key, particularly when wearing personal protective equipment or speaking to relatives over the phone. It is also important to make time to recognise your own emotions during and/or after these conversations.

Factors associated with facilitating advance care planning based on the theory of planned behaviour.

BACKGROUND: In Japan, educational support for advance care planning is still limited, and the factors facilitating advance care planning practice have not been identified. The aim of this study is to identify the factors associated with advance care planning practice in Japan using the theory of planned behaviour. METHODS: We conducted a cross-sectional study through a nationwide online questionnaire survey with 446 Japanese residents aged 20 years and older. After categorizing participants into two groups based on who performed advance care planning, comparisons were made (univariate analysis) regarding attitudes towards advance care planning, willingness to perform advance care planning, subjective norms, sense of control in performing advance care planning, presence of and relationship with a family doctor, experience of seeing or using a ventilator, and degree of self-determination (Autonomy Preference Index) as well as sociodemographic data. In addition, a logistic regression analysis was performed using the factors with significant differences in the univariate analysis as independent variables and the existence of the implementation of advance care planning as a dependent variable. RESULTS: The group with advance care planning consisted of 106 participants (23.8%), and the group without advance care planning comprised 340 participants (76.2%). Through logistic regression analysis, age (odds ratio: 1.020), subjective norms (odds ratio: 3.276) and experience with mechanical ventilation (odds ratio: 1.997) were extracted as significant factors influencing advance care planning implementation. CONCLUSIONS: Advance care planning may be facilitated by providing support not only to the patients but also to their family members to be positively disposed towards advance care planning and by offering comprehensive education regarding using a ventilator.

Implementing Advance Care Planning in 'The Age of Deferred Death'- the Hong Kong Experience over 4 Years.

OBJECTIVES: To plan, implement and evaluate a series of initiatives to improve patient centred quality of end of life care through raising public awareness, promoting the concept that all health and social care professionals should be engaged in this practice, and carrying out pilot of community care models. DESIGN: Pilot studies of community models of care, training programs for health and social care professionals, public education programmes. SETTING: Selected hospitals, residential care homes for the elderly, and community centres in Hong Kong. PARTICIPANTS: Patients and their families at the end of life stage. MEASUREMENTS: Combination of quantitative and qualitative studies according to different components of the initiative. RESULTS: Effective training for professional staff occurred using training videos, role play, rather than lectures, and when concepts are integrated into daily practice and quality assurance programmes. Members of the public welcomed end of life care discussions and the implementation of advance care planning. The pilot community care program was found to reduce anxiety, depression, physical symptoms, improve communication within the family as well as promoting a feeling of peace among recipients of the service. It also reduced care giver strain and anxiety, as well as hospital visits and duration of stay. Similar findings were also observed among recipients of care in the residential care setting. CONCLUSION: A sustainable model would require uptake by policy makers and chief executives of Social Welfare and Health Bureaus, supported by amendments of relevant legal ordinances, which is in progress after public consultation.

Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers.

Importance: The burden of end-of-life care for patients with cirrhosis is increasing in the US, and most of these patients, many of whom are not candidates for liver transplant, die in institutions receiving aggressive care. Advance care planning (ACP) has been associated with improved end-of-life outcomes for patients with other chronic illnesses, but it has not been well-characterized in patients with decompensated cirrhosis. Objective: To describe the experience of ACP in patients with decompensated cirrhosis at liver transplant centers. Design, Setting, and Participants: For this multicenter qualitative study, face-to-face semistructured interviews were conducted between July 1, 2017, and May 30, 2018, with clinicians and patients with decompensated cirrhosis at 3 high-volume transplant centers in California. Patient participants were adults and had a diagnosis of cirrhosis, at least 1 portal hypertension-related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher. Clinician participants were health care professionals who provided care during the illness trajectory. Main Outcomes and Measures: Experiences with ACP reported by patients and clinicians. Participants were asked about the context, behaviors, thoughts, and decisions concerning elements of ACP, such as prognosis, health care preferences, values and goals, surrogate decision-making, and documentation. Results: The study included 42 patients (mean [SD] age, 58.2 [11.2] years; 28 men [67%]) and 46 clinicians (13 hepatologists [28%], 11 transplant coordinators [24%], 9 hepatobiliary surgeons [20%], 6 social workers [13%], 5 hepatology nurse practitioners [11%], and 2 critical care physicians [4%]). Five themes that represent the experiences of ACP were identified: (1) most patient consideration of values, goals, and preferences occurred outside outpatient visits; (2) optimistic attitudes from transplant teams hindered the discussions about dying; (3) clinicians primarily discussed death as a strategy for encouraging behavioral change; (4) transplant teams avoided discussing nonaggressive treatment options with patients; and (5) surrogate decision makers were unprepared for end-of-life decision-making. Conclusions and Relevance: This study found that, despite a guarded prognosis, patients with decompensated cirrhosis had inadequate ACP throughout the trajectory of illness until the end of life. This finding may explain excessively aggressive life-sustaining treatment that patients receive at the end of life.

A Collaborative educational intervention to improve pre-clinical medical student confidence with Advance Care Planning (ACP).

BACKGROUND: Advance care planning (ACP) is an essential skill for clinicians, yet trainees feel inadequately prepared to conduct ACP discussions. Optimal teaching methods and timing are unknown. AIM: We designed a curricular intervention to expose second-year medical students to the process of ACP, aiming to improve their ACP knowledge and confidence. DESIGN: The intervention consisted of a case-based workshop facilitated by a physician experienced in ACP ("facilitated ACP workshop"), which was added to an existing multifaceted ACP curriculum (longitudinal senior mentor program including multiple visits with a volunteer older adult, completion of an electronic ACP learning module and reflective writing exercise). The control group received the existing ACP curriculum only, while the intervention group received the existing curriculum plus the facilitated ACP workshop. Both groups completed an ACP knowledge assessment and confidence survey at the conclusion of the curriculum. SETTING/PARTICIPANTS: Two consecutive classes of second year medical students, single academic hospital. RESULTS: No statistically significant differences in ACP knowledge or confidence were seen post-intervention. Overall confidence with ACP tasks remained relatively low despite a multifaceted ACP curriculum. CONCLUSIONS: Future studies should investigate longitudinal, experiential ACP learning, and seek to optimize ACP teaching strategies and timing.

Advance care planning in medicare/medicaid-funded agencies: providing a training in cultural competence.

This study presents a training that was developed for staff members at Medicare/Medicaid agencies to improve their knowledge and comfort levels in working on advance care planning (ACP) with their clients in a culturally competent manner. The training was developed to address the need to clarify the different types and purposes of ACP and to help develop the skills needed to work with clients of diverse cultural backgrounds. The evaluation of findings from the training showed the positive impacts that it had on participants; in particular, they exhibited demonstrated improvement in their knowledge of and comfort levels with ACP. The participants also expressed interest in receiving continued training surrounding ACP to increase their cultural competency skills and to receive updated information on ACP policies and practices.

Advance care planning for home health staff: a systematic review.

BACKGROUND: Advance care planning (ACP) is a process where patients express their wishes regarding their future healthcare. Its importance has been increasingly recognised in the past decade. As increasing numbers of elderly people are living in care homes, the aim of this review was to identify the most effective ACP interventions to train/educate all levels of healthcare professionals working in care homes. DESIGN: A systematic review. Two independent reviewers undertook screening, data extraction and quality assessment. DATA SOURCES:  Searched from inception to June 2018: Ovid Medline, Ovid Medline in process, Ovid Embase, Cochrane Central Register of Controlled Trials, EBSCO Cinahl and Ovid PsycINFO. RESULTS: Six studies were included: three before and after studies, one cluster randomised controlled trial (RCT), one non-blinded RCT and one qualitative study. Five studies reported on ACP documentation, three on impact on ACP practice and three studies on healthcare-related outcomes. All quantitative studies reported an improvement in outcomes. In the three studies reporting on health-related outcomes, one showed significant reductions in hospitalisation rate, days and healthcare costs; one reported significant reductions in hospital deaths; and the third showed reductions in hospital days and deaths. A meta-analysis could not be performed due to the heterogeneity of the outcome measures. The included qualitative study highlighted perceived challenges to implementing an educational programme in the care home setting. CONCLUSION: There is limited evidence for the effectiveness of ACP training for care home workers. More well-designed studies are needed. TRIAL REGISTRATION NUMBER: CRD42016042385 .

Effect of Behavior Change Techniques Targeting Clinicians to Improve Advance Care Planning in Heart Failure: A Systematic Review and Meta-Analysis.

BACKGROUND: National and international guidelines recommend advance care planning (ACP) for patients with heart failure. But clinicians seem hesitant to engage with ACP. PURPOSE: Our aim was to identify behavioral interventions with the greatest potential to engage clinicians with ACP in heart failure. METHODS: A systematic review and meta-analysis. We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index, and PsycINFO for randomized controlled trials (RCTs) from inception to August 2018. Three reviewers independently extracted data, assessed risk of bias (Cochrane risk of bias tool), the quality of evidence (Grading of Recommendation Assessment, Development, and Evaluation), and intervention synergy according to the behavior change wheel and behavior change techniques (BCTs). Odds ratios (ORs) were calculated for pooled effects. RESULTS: Of 14,483 articles screened, we assessed the full text of 131 studies. Thirteen RCTs including 3,709 participants met all of the inclusion criteria. The BCTs of prompts/cues (OR: 4.18; 95% confidence interval [CI]: 2.03-8.59), credible source (OR: 3.24; 95% CI: 1.44-7.28), goal setting (outcome; OR: 2.67; 95% CI: 1.56-4.57), behavioral practice/rehearsal (OR: 2.64; 95% CI: 1.50-4.67), instruction on behavior performance (OR: 2.49; 95% CI: 1.63-3.79), goal setting (behavior; OR: 2.12; 95% CI: 1.57-2.87), and information about consequences (OR: 2.06; 95% CI: 1.40-3.05) showed statistically significant effects to engage clinicians with ACP. CONCLUSION: Certain BCTs seem to improve clinicians' practice with ACP in heart failure and merit consideration for implementation into routine clinical practice.

Unraveling patients' readiness in advance care planning conversations: a qualitative study as part of the ACTION Study.

PURPOSE: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation. METHODS: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. RESULTS: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. CONCLUSION: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families.

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (ß = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (ß = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (ß = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.

Exploration of the acceptability and usability of advance care planning tools in long term care homes.

OBJECTIVES: Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC. METHODS: A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims. RESULTS: Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%). CONCLUSIONS: ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication.