Advance Care Planning Program Research Articles

Advance Care Planning: Perspectives of People Living in Prison.

A person-centered approach to advance care planning is recognized as a fundamental need, yet its routine implementation remains a challenge across disparate settings, such as prisons. The purpose of this study was to gain the perspectives of people who are incarcerated about advance care planning. Four focus groups were conducted with people living in 1 men's and 1 women's state prison (n = 26). Handwritten field notes were taken, transcribed, deidentified, and verified before the completion of independent thematic analysis by 2 experienced qualitative researchers. Key themes regarding advance care planning were identified: components of advance care planning, initiation and continuation of advance care planning, barriers to implementing advance care planning, and facilitators to implementing advance care planning. Participants noted several key components related to the name, structure, and content of advance care planning programs. Insights about who should initiate the conversation, when to continue the conversation, and how to deliver education about advance care planning were obtained. Findings contribute to identifying best practices for infusing advance care planning into prisons. Best practices will inform the development of a toolkit of contextually relevant, person-centered approaches to advance care planning that are tailored to meet the unique needs of people who are incarcerated.

Culturally Sensitive Advance Care Planning for African American Advanced Cancer Patients: A Pilot Randomized Controlled Trial

ContextRacial disparities in advance care planning (ACP) have been consistently identified in the literature. Few interventions have been designed to address the disparities identified. ObjectivesTo assess the feasibility, acceptability, and preliminary efficacy of a culturally sensitive, pilot ACP intervention for African American patients diagnosed with cancer in a safety net healthcare system. MethodsEligible patients with stage II, III, or IV breast, lung, colorectal, or prostate cancer were identified from the electronic health record, recruited, and randomized to the intervention group or usual care control group. Intervention participants met with an African American lay health advisor who assisted them in watching a video that addressed completion of ACP and facilitated ACP discussion. Descriptive analyses were conducted to examine baseline sociodemographic and clinical characteristics, cancer health literacy, and religious coping among participants. Logistic regression analyses were conducted to evaluate predictors of positive change in stage of intent to discuss ACP at 1, 3, and 6-months post intervention. ResultsSeventy-six participants were recruited and randomized (38 intervention, 38 controls). The mean age for participants was 58.8 years (SD 10.8), 62.5% were female, and 90.2% had stage III or IV disease. The intervention proved feasible with 89.5% completion. Intervention participants were more likely to have a positive change in stage of intent to discuss a living will or advance directive than usual care controls at one-month (AOR: 4.57, 95%CI: 1.11, 18.82) and 3-months (AOR: 5.38, 95%CI: 1.05, 27.68) post-intervention. The majority (94.1%) of intervention participants would recommend the intervention to a friend or family member. ConclusionThis culturally sensitive ACP program proved to be feasible, acceptable to participants, and showed some promise in promoting discussion about ACP among participants and members of their healthcare team.

Effects of Advance Care Planning on End-of-Life Indicators for Nursing Home Residents-An Experimental Study with a Retrospective Chart Review.

Advance care planning (ACP) has the potential to improve the outcomes of end-of-life care for residents in nursing homes. The aim of this study was to determine whether an ACP program was beneficial for nursing home residents by assessing end-of-life indicators. An experimental study with a retrospective chart review was conducted. In total, 37 residents in the intervention group participated in an institutional advance care planning program for 1 year, and their chart data over 1 year were collected following the completion of the program; 33 residents in the control group had died within 1 year before the start date of program, and their chart data were reviewed retrospectively. Chi-square and t tests were used to examine four indicators of the quality of end-of-life care. Compared with the control group, the intervention group had a higher proportion of do-not-resuscitate directives, hospice care before death, and deaths in the nursing home, and fewer hospitalizations and deaths in an emergency department. ACP programs may improve the quality of end-of-life care for nursing home residents in Taiwan. Further research across different long-term care facilities is warranted.

"It Gives Me Peace of Mind So I Can Focus on Healing": Views on Advance Care Planning for Older Surgical Patients.

Introduction: The period of time before an elective operation may be an opportune time to engage older adults in advance care planning (ACP). Past interventions have not been readily incorporated into surgical workflows leaving a need for ACP tools that are generalizable, easy to implement, and effective. Design: This is a qualitative study. Setting and Subjects: Older adults with a history of cancer and a recent major operation were recruited through their surgical oncologist at a tertiary medical center in the United States. Interviews were conducted to determine how to adapt the validated PrepareForYourCare.org ACP program with electronic health record prompts for the perioperative setting and openness to introducing ACP during a presurgical visit. We used qualitative content analysis to determine themes. Results: Eight themes were identified: (1) ACP as static and private, (2) people expected a prompt, (3) family trusted to do the "right" thing, (4) lack of relationship or comfort with providers, (5) a team-based approach can be helpful, (6) surgeon's expertise (e.g., prognosis and surgical risk), (7) ACP belongs on the surgical checklist, and (8) patients would welcome a conversation starter. Discussion: Older surgical patients are interested in engaging with ACP, particularly if prompted, and believe it has a place on the preoperative "checklist." Conclusions: To effectively engage patients with ACP, a combination of routine prompts by the health care team and patient-centered follow-up may be required.

Relationship between implementation of systematic advance care planning and the quality of death among nursing home residents: a survey.

Advance care planning (ACP) is beneficial for the quality of death (QOD). However, the effects of ACP on the QOD may vary across cultures. This study aimed to explore the relationship between the 15-step ACP program and the QOD among Japanese nursing home residents. A cross-sectional survey. A cross-sectional survey was conducted among the family members of 39 nursing home residents who died between April 2017 and March 2019 by distributing the survey questionnaire by post. The survey included questions about the QOD of residents, and responses were evaluated using the Good Death Inventory (GDI) scale. Responses were obtained from 30 of the 39 bereaved families (76.9%). Data were analyzed using hierarchical clustering to determine five groups and conduct multiple comparisons. The following three domains of interest were identified: 'Dying in a favorite place', 'Good relationship with the medical staff', and 'Independence'. GDI scores were significantly higher for residents with higher ACP completion rates than for those with lower rates (p < 0.01). Residents who had taken ACP interviews had significantly higher GDI scores (p < 0.01) than those who had not taken interviews. Overall, these findings suggest that systematic ACP might be related to the QOD among Japanese nursing home residents in the above mentioned three domains. Limitations of the present study were small sample size, cross-sectional survey design as opposed to a cohort survey design, and multiple biases, including the emotional instability of bereaved family members, the length of stay of the residents, the degree of dementia of the residents, and their tendency to talk about the place of death and to develop good relationships with the medical staff.

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 &amp;gt; 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.

Cancer patients' expectations of advance care planning: Atypological content analysis of qualitative interviews.

Advance care planning (ACP) can help to elicit cancer patients'preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. Thepresented study, therefore, aims to explore cancer patients' expectations of ACP. Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.

Evolution and current state of Advance Care Planning in Canada

Canada is one of the early pioneers of Advance Care Planning concepts, processes, programs and initiatives. The evolution of national messages, models and frameworks is shaped by our publicly funded healthcare system and culturally diverse populations. Our Pan-Canadian Community Framework highlights the importance of individuals, those that matter to them, communities, organizations, and healthcare professionals collaborating, integrating, sharing, and building upon each other’s strengths and successes. This framework describes Canada’s priority actions at national, provincial and local levels. Our collective vision is for Advance Care Planning to be a part of the life journey.

Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned.

Advance care planning (ACP) pragmatic trials are needed. We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD+PREPAREforYourCare.org; (Arm 3) AD+PREPARE+lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data. We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts. Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n=2243) received navigator outreach. Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts.

Tō tatou reo – Our voice: Advance Care Planning in Aotearoa New Zealand

The advance care planning programme in Aotearoa New Zealand aims to empower all New Zealanders to participate in planning their future health and end-of-life care. Guided by the core values of our 2022–25 strategy, the programme has developed education, tools and resources to support consumers, their family and whānau and clinicians to optimise the opportunities for what matters most to a person to guide and inform care delivery throughout their life.

Advance Care Planning in Spain

In the last decade in Spain, an important push has been given to the development of health policies that define the framework of action in the care of people with advanced chronic diseases. Respect for the autonomy of the patient, shared decision-making processes and advance care planning (ACP) are recognized into health plans as a key aspect in chronic care, frailty, and palliative care. A few but significant number of institutions, local governments, and healthcare professionals from different regions of Spain have started a rationale and roadmap for a new twist in Spain’s theoretical, ethical and policy development, promoting ACP implementation into public health care systems. In 2020, a working group founded in 2017, evolved into the “Spanish Association of Shared Care Planning” (AEPCA). The Shared Care Planning (SCP) concept grows up after the two international consensus Delphi studies in 2017 and pretends to shift from the framework of ACP programs to a person-centred care approach. In the last years, several experiences show how professionals are more sensible and interested on the ACP process, but it cannot be said, for now, that it has taken effect in the global Spanish health system. Even both ACP and SCP are being used simultaneously in Spain, each day more people and autonomous communities embrace renewed concept and foundations of SCP, supporting the work of AEPCA on spreading the value of this process into the care of people who are coping with chronic diseases, vulnerability, and frailty.

Improving uptake of advance care planning through education and training in a public hospital geriatric clinic.

Advance care planning (ACP) is an important part of routine medical care. However, Western Australia (WA) consistently demonstrates poor rates of completion. International and interstate ACP programs have previously led to an increase in ACP discussion and documentation. This study aimed at evaluating the effect of a multifaceted intervention on completion of ACP in a geriatric outpatient setting in WA. The Plan-Do-Study-Act (PDSA) cycle was used for this audit. The components of the intervention comprised of education and communication skill training, improving access to ACP documents and patient resources. Pre- and post-intervention reviews of documented future care planning discussions were performed and compared. Of the 100 patients audited, there was an absolute increase of 23% (p = 0.02) in any form of future care planning. More specifically, discussions regarding ACP increased by 13% (p = 0.01), Advance Care Directive (ACD) by 23% (p < 0.001), Enduring Power of Attorney (EPA) by 24% (p = 0.02), Enduring Power of Guardianship (EPG) by 31% (p = 0.002), together with a 10% (p = 0.02) increase in the provision of ACP resources to patients. Older patient age (p = 0.02) and abnormal cognitive testing (p = 0.02), but not established dementia, were patient-related factors associated with initiation of ACP discussions. A simple structured multifaceted intervention improved the uptake of ACP discussions in a hospital geriatric clinic.

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...

The care planning umbrella: The evolution of advance care planning.

The care planning umbrella: The evolution of advance care planning.

Taiwanese Older Adults Prefer to Use Antibiotics and Intravenous Infusion at the End of Life based on a Cartoon Version of the Life Support Preferences Questionnaire.

Asians believe discussing death-related topics is inauspicious and may bring bad luck. It is critical to explore the end-of-life care preferences of the Asian elderly with less-threatening tools. The study examined older adults' preferences regarding end-of-life treatments by applying a cartoon version of the Life Support Preferences Questionnaire (LSPQ). A cross-sectional survey was conducted to understand older adults' preferences for end-of-life treatments. A total of 342 older adults participated in the study, comprising 268 elderly patients from a veterans hospital located in northern Taiwan and 74 elderly family members of the patients. Regardless of scenario, cardiopulmonary resuscitation (CPR) had the lowest score, indicating that older adults considered it a less desirable medical treatment. By contrast, antibiotics and intravenous infusions had the highest scores, indicating that older adults tended to prefer them. End-of-life care preferences were significantly different in genders. CPR and surgical preferences of older adults differed significantly with education level. Different demographic characteristics had different end-of-life treatment preferences, and future research may develop advance care planning programs for different attributes. This cartoon version of the LSPQ can help healthcare professionals to understand older adults' preferences for end-of-life care and warrants further empirical research.

The Web-Based Advance Care Planning Program "Explore Your Preferences for Treatment and Care": Development, Pilot Study, and Before-and-After Evaluation.

Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based. We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care. The program "Explore your preferences for treatment and care" was developed, pilot-tested on feasibility, and subsequently evaluated; engagement in ACP was assessed before program completion and 2 months after program completion using the ACP Engagement Survey (score 1-5) among 147 persons with chronic disease. Usability (score 0-100) and user satisfaction (score 1-5) were also assessed. ACP engagement increased from 2.8 before program completion to 3.0 two months after program completion (P<.001); contemplation about ACP increased from 2.6 to 2.8 (P=.003), and readiness for ACP increased from 2.2 to 2.5 (P<.001). No changes were found for knowledge about ACP (3.0-3.2; P=.07) and self-efficacy for ACP (3.8-3.8; P=.25). The program was perceived as usable (mean 70, SD 13), attractive (mean 3.8, SD 0.7), and comprehensible (mean 4.2, SD 0.6). We developed an evidence-based, interactive web-based ACP program in cocreation with patients, relatives, and health care professionals. Before-and-after evaluation showed that the program can support people in taking first steps in ACP and in reflecting on preferences for treatment and care, by guiding them through the process of ACP using a stepwise approach. Participants perceived the program as usable and understandable, and they were satisfied with the program and with the amount of information. Health care professionals may use the program as a tool to start ACP discussions with their patients. The program may increase awareness of ACP.

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.

Complexity of implementing a nationwide advance care planning program: results from a qualitative evaluation.

We evaluated Singapore's national advance care planning (ACP) program to understand challenges to its implementation within multiple clinical settings. We conducted focus group discussions (FGDs) with a purposive sample of health care professionals (HCPs) involved in ACP program delivery within acute care hospitals, primary care clinics and nursing homes. FGDs were stratified into three categories based on HCPs' role within the ACP framework-leaders versus facilitators and advocates versus nursing home heads. Using NVivo 11, we analysed data using thematic analysis and Conceptual Framework for Implementation Research. A total of 107 HCPs from 25 organisations participated in 22 FGDs. Findings revealed wide variation in ACP implementation among organisations and identified 12 themes organized within four domains-outer setting (lack of public awareness, shortcomings in inter-organisational partnerships, performance driven policies), inner setting (lack of commitment from organisational leadership, paucity of dedicated resources, absence of an institution-wide ACP culture, lack of physician engagement), characteristics of HCPs (language barriers) and process (inadequate training, complexity of conversations and documentations, challenges to retrieving ACP documents, absence of comprehensive monitoring and evaluation). ACP program implementation is complex and faces multiple health care system challenges. To integrate ACP within routine clinical care, ACP processes should be simplified, training framework be strengthened, physicians be engaged and an ACP supportive culture be created within and outside organisations. Findings will be used to guide ACP implementation within the country and globally.

The Effect of Advance Care Planning Intervention on Hospitalization Among Nursing Home Residents: A Systematic Review and Meta-Analysis.

To evaluate the effect of advance care planning (ACP) interventions on the hospitalization of nursing home residents. Systematic review and meta-analysis. Nursing homes and nursing home residents. A literature search was systematically conducted in 6 electronic databases (Embase, Ovid MEDLINE, Cochrane Library, CINAHL, AgeLine, and the Psychology & Behavioral Sciences Collection), in addition to hand searches and reference list checking; the articles retrieved were those published from 1990 to November 2021. The eligible studies were randomized controlled trials, controlled trials, and pre-post intervention studies describing original data on the effect of ACP on hospitalization of nursing home residents; these studies had to be written in English. Two independent reviewers appraised the quality of the studies and extracted the relevant data using the Joanna Briggs Institute abstraction form and critical appraisal tools. A study protocol was registered in PROSPERO (CRD42022301648). The initial search yielded 744 studies. Nine studies involving a total of 57,180 residents were included in the review. The findings showed that the ACP reduced the likelihood of hospitalization [relative risk (RR) 0.54, 95% CI 0.47-0.63; I2= 0%)], it had no effect on emergency department (ED) visits (RR 0.60, 95% CI 0.31-1.42; I2= 99), hospice enrollment (RR 0.98, 95% CI 0.88-1.10; I2= 0%), mortality (RR 0.83, 95% CI 0.68-1.00; I2= 4%), and satisfaction with care (standardized mean difference:-0.04, 95% CI-0.14 to-0.06; I2= 0%). ACP reduced hospitalizations but did not affect the secondary outcomes, namely, ED visits, hospice enrollment, mortality, and satisfaction with care. These findings suggest that policy makers should support the implementation of ACP programs in nursing homes. More robust studies are needed to determine the effects of ACP on ED visits, hospice enrollment, mortality, and satisfaction with care.