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.

Feasibility of an Advance Care Planning Program (ACP) for Korean Community-Dwelling Older Adults and ACP Training of Advance Practice Nurses.

This study aimed to develop a locally suitable advance care planning (ACP) program for older community-dwelling adults and a training program for nurse facilitators in Korea, and to evaluate their feasibility from the facilitators' experiences. This was a mixed methods pilot study that assessed the feasibility of an ACP program by analyzing survey, checklist, and focus group interview data. The ACP program was named CLOSE (Communicating and Listening to Our Seniors' voices about End-of-life care). Home health care nurses (N = 9) participated in this study. The participants reported that CLOSE was applicable to older community-dwelling adults and the training program was useful for increasing facilitator competency. We suggest some lessons from this pilot study that can be used to improve the ACP program and encourage community health nurses to participate in ACP as facilitators.

Perceptions of the Importance of Advance Care Planning During the COVID-19 Pandemic Among Older Adults Living With HIV.

Background: The importance of advance care planning (ACP) discussions have been heightened during the COVID-19 pandemic. We assessed advance directive completion, healthcare proxy (HCP), and attitudes toward ACP among older adults ages 50+ living with HIV during the COVID-19 pandemic. Methods: Internet-based surveys were administered to 100 participants residing in the Coachella Valley, California from April to June 2020. We examined self-reported completion of an advance directive, HCP, and attitudes toward ACP before and after COVID-19. Adjusted regressions were performed on attitudes toward ACP. Results: Participants' mean age was 64.2 years, most were non-Hispanic white (88.0%), men (96.0%), and identified as sexual minorities (96.0%). Many reported having an advance directive (59.6%) or HCP (67.3%). Most (57.6%) believed ACP to be more important now compared to the pre-pandemic era. Having an advance directive was associated with increase in age, higher education, living with other people, never having an AIDS diagnosis, and current undetectable viral load (p < 0.05). Having a HCP was associated with higher education, being married/partnered, and living with other people (p < 0.05). In a logistic regression model adjusted for education and living situation, the belief that ACP was more important during COVID was associated with not having an advance directive (OR: 5.07, 95% CI: 1.78-14.40) and fear of COVID-19 infection (OR: 4.17, 95% CI: 1.61-10.76.) Conclusions: The COVID-19 pandemic presents a window of opportunity to engage people aging with HIV in ACP discussions, particularly those who do not already have an advance directive.

Continuing Education Outcomes for Advance Care Planning: A Systematic Review of the Literature.

INTRODUCTION: Advance care planning (ACP) is a process of considering future health and care needs for a time when a person may be unable to speak for themselves. Health professional continuing education programs have been proposed for facilitating patient participation in ACP; however, their impacts on participants, patient and clinical outcomes, and organizational approaches to ACP are not well understood. METHODS: This systematic literature review examined interventional studies of education programs conducted with health professionals and care staff across a broad range of settings. Five electronic databases were searched up to June 2020, and a manual search of reference lists was conducted. The quality of studies was appraised by the first, second, and third authors. RESULTS: Of the 7993 articles identified, 45 articles met the inclusion criteria. Program participants were predominantly medical, nursing, and social work staff, and students. Interventions were reported to improve participants' self-perceived confidence, knowledge, and skills; however, objectively measured improvements were limited. Multimodal programs that combined initial didactic teaching and role-play simulation tasks with additional activities were most effective in producing increased ACP activity in medical records. Evidence for improved clinical outcomes was limited. DISCUSSION: Further studies that use rigorous methodological approaches would provide further evidence about what produces improved patient and clinical outcomes. Needs analyses and quality indicators could be considered to determine the most appropriate and effective education resources and monitor their impacts. The potential contribution of a broader range of health professionals and interprofessional learning approaches could be considered to ultimately improve patient care.

Advance care planning: the future.

OBJECTIVES: There is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns. METHODS: We provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity. RESULTS: Different models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia. CONCLUSIONS: ACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study.

PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

Stakeholder perspective on barrier to the implementation of Advance Care Planning in a traditionally paternalistic healthcare system.

BACKGROUND: Advance psychiatric agreements could guide medical teams in providing care consistent with the incapacitated service user's wishes. However, these types of agreements are rarely completed in Asian settings. What challenges can a traditionally paternalistic healthcare system expect to encounter when attempting to implement psychiatric advance directives? METHODS: We answered this research question by exploring the cultural, administrative and logistical challenges that might impede the implementation of the system supporting the service. We interviewed key stakeholders, 28 service users and 22 service providers, to seek their views and interests in the implementation of directives. We structured our analyses along a literature-review-based framework designed to guide further implementation studies, proposed by Nicaise and colleagues (2013). Accordingly, we divided our inductively generated themes into four longitudinal categories: pre-development stage, development stage, implementation stage, post-implementation stage. RESULTS: Overall, the findings indicated that many service users and service providers are interested in advance care planning. They believed that foreseeable challenges could be overcome with appropriate measures. However, the multiple challenges of implementation led some service providers to be ambivalent about their implementation and led service users to dismiss them. Specifically, factors related to the local culture in Singapore necessitated adjustments to the content and structure of the directives. These include language barriers in a multicultural society, conflicting wishes in a collectivist society, taboos for speaking about undesirable outcomes in a traditionalist society, and time limitations in a fast-paced society. CONCLUSION: While culture-specific changes may be required to enable service users in a small Asian country to employ existing advance psychiatric agreement approaches, service providers and service users see their benefits. However, service providers must be mindful not to assume that service users are willing to defer every decision to their physician.

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.

The Impact of Organizational Factors on Nurses' Knowledge, Perceptions, and Behaviors Around Advance Care Planning.

The objective of this study was to understand the organizational context of nurses' use of advance care plans (ACPs). We use a modified version of Bandera's social cognitive theory model to understand relationships between organizational constructs such as experience with ACPs and satisfaction with organizational support and oncology nurses' knowledge, behaviors, and perceptions around ACPs. The sample included practicing registered nurses with a major focus in oncology who were members of the Oncology Nursing Society in the United States, and nurses at medical hospital or community care settings were included. Institutional review board approval was obtained, and permission was granted from the oncology nursing organization for online surveys. A validated ACP survey was used to measure nurses' experiences and perceptions of working with ACP. Perceptions of ACP by patients, vicarious experience with ACP, direct experience of ACP, having received training, and perceptions of organizational support for ACP were all predictive of total ACP behaviors in the workplace. The final regression model had 3 independent variables and accounted for 33% of the variance in total ACP behaviors. Both vicarious and direct experience with ACP was associated with ACP behaviors in workplaces. This implies the need for more vicarious and direct training experiences, as well as organization support, to build self-efficacy to perform ACP.

Nurse Educators Establish and Evaluate Community Coalition to Promote Statewide Advance Care Planning Through RE-AIM.

The purpose of this quality improvement project was to evaluate a statewide initiative promoting Advance Care Planning (ACP) to educate and support multidisciplinary ACP educators and provide tools to start ACP conversations in a predominantly rural state of the Upper Midwest. Individual objectives were to (1) motivate people of different professions and backgrounds to support the vision and (2) implement a system to educate and maintain a pipeline of ACP educators in appropriate methodologies to enable ACP in distant communities. The Advance Care Planning: Quality Conversations coalition was formed in 2015 to improve health care across the life span. The Reach-Effectiveness-Adoption-Implementation-Maintenance framework was applied to evaluate the project. Outcome variables were measured before, during, and after program implementation through service statistics and a questionnaire. Participation in the coalition's membership team between September 2015 and September 2019 ranged from 18 to 36 with a median of 27 and mode of 27. At least 20 different professions were represented. The coalition provided funds for educating 9 ACP instructors and 180 facilitators according to the Respecting Choices-First Steps ACP program. The coalition's mission has generated sustained interest for 4 years. Key elements and obstacles to implementing a statewide coalition were identified.

Implementing advance care planning: A qualitative exploration of nurses' perceived benefits and challenges.

AIM: To explore nurses' perspectives on implementing advance care planning (ACP) in an acute setting. BACKGROUND: Advance care planning can assist patients to achieve peace of mind and a sense of control in decision-making. Nurses are well-positioned to integrate ACP into practice. METHODS: A descriptive, qualitative study using face-to-face semi-structured interviews was conducted among 16 nurses. A theoretical sampling strategy was used to inform data collection. Data were analysed using a thematic approach. RESULTS: Three major themes were found from nurses' narratives of implementing ACP: value of ACP, communicating ACP and barriers to advocating ACP. IMPLICATIONS FOR NURSING MANAGEMENT: Implementing ACP will require a multi-pronged approach, which includes specific training and changes in hospital policies. Findings from this study will enable hospital administrators to make informed decisions in preparing training programmes for ACP from nurses' perspectives. CONCLUSION: Advance care planning provides a clear direction for health care professionals in meeting patients' desired outcomes. However, a lack of understanding and acceptance among the public, as well as systematic clinical routine supporting nurses' roles and responsibilities in ACP, was recognized.

Complexity Science Fosters Professional Advanced Nurse Practitioner Role Emergence.

This article discusses role emergence from master's-prepared nurse practitioners to Doctor of Nursing Practice (DNP) innovative leaders who utilize Complexity science to impact health care organizations. DNP leaders are in position to disrupt linear traditional leadership and embark on new ideas for improvements in care delivery, organizational system processes, and policies within health care. Complexity science provides the necessary theoretical framework for nurse executives and stakeholders to interact with DNP leaders by engaging in collaborative efforts, cultivating communication from point of service providers to administrators, and coordinating interdisciplinary teams to approach gaps in practice, clinical issues, health care policy, and organizational sustainability. The DNP leader is aware that health care organizations are complex adaptive systems, continuously changing. These require skilled and knowledgeable leaders to support growth within an uncertain environment, and bring evidence to practice while promoting organizational wellness.

Factors Associated With Life Discussions Among Friends and Family in Japanese Depopulated Areas.

Advance care planning is spreading globally, but it is still a difficult task for healthy, community-dwelling Japanese residents. In Japan, it is called "life discussion," and the first step is a discussion on goals, values, and preferences of medical care among family or other close persons, as knowledge on this topic is limited. This study aimed to explore the factors associated with the degree of engagement in life discussions among friends and family in depopulated areas. In 2 areas of Japan, 2466 individuals (aged 40-79 years) participated in this survey. Health/life habits, such as collecting health information and participating in some community activities, were significantly associated with the discussions more than attitude to medical/long-term care and community. Additionally, it was discussed how local governments could intervene to encourage advance care planning in depopulated areas. In conclusion, health habits or attitudes for care such as preference and desire for care among community-dwelling adults were associated with engaging in the discussions. It was proposed that local governments should motivate individuals to consider end-of-life experiences from a first-person perspective for creating advance care planning directives, and nurses could facilitate the discussion when death is imminent.

Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation.

BACKGROUND: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change. METHODS: We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design. DISCUSSION: There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family. TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018. Hence, the trial was retrospectively registered but before end of data collection and analyses.

Culturally Adapting an Advance Care Planning Communication Intervention With American Indian and Alaska Native People in Primary Care.

Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population. Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings. Results: We found that it is important to incorporate patients' cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient-provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.

Progress in advance care planning among nursing home residents dying with advanced dementia-Does it make any difference in end-of-life care?

BACKGROUND: Increased awareness of the clinical course of nursing home residents with advanced dementia and advance care planning (ACP) has become the cornerstone of good palliative care. OBJECTIVE: The aim of our study is to describe changes in ACP in the form of physician treatment orders (PTOs), symptom prevalence and possible burdensome interventions among nursing home (NH) residents who died between 2004-2009 and 2010-2013 METHODS: Retrospective study RESULTS: The number of PTOs regarding forgoing antibiotics or parenteral antibiotics, forgoing artificial nutrition or hydration or forgoing hospitalisation doubled between 2004-2009 and 2010-2013 (38.1% vs. 64.9%, p < 0.001; 40.0% vs. 81.7%, p < 0.001; 28.1% vs. 69.5%, p < 0.001, respectively). PTOs were also done significantly earlier in 2010-2013 than in 2004-2009. The prevalence of distressing symptoms and possible burdensome interventions remained unchanged, although the prevalence of consistency with the PTOs was high. CONCLUSION: Despite the increased number of PTOs, this had little effect on symptom prevalence and possible burdensome interventions experienced by NH residents in the last days of life.