Advance Care Planning Discussions Research Articles

THE LANDSCAPE OF ALZHEIMER’S DISEASE AND RELATED DEMENTIAS CAREGIVER COMMUNICATION RESEARCH

Abstract Alzheimer’s Disease and Related Dementias (ADRD) affect one in nine adults aged 65 and over. Past research has demonstrated the need for services that improve quality of care for those with ADRD and their caregivers. Those with ADRD are at a greater risk for negative health outcomes. Therefore, it is crucial that those with ADRD receive care consistent with their preferences. However, more research is needed to shed light on effective tools available and patterns of advance care planning (ACP) when it comes to those with ADRD and their caregivers. This symposium highlights the landscape of ACP communication among those with ADRD and their caregivers. The session begins with a study that explored experiences of apathy and preferences for dyadic-communication via mobile health (mHealth) among adults with mild cognitive impairment and their care-partners. The second presentation demonstrates the feasibility and effectiveness of a palliative care education in assisted living program for nurses and administrators on increasing ACP discussions with family caregivers of residents with dementia. The third presentation investigates ACP among African Americans with ADRD and their caregivers and the critical role the community can play in facilitating communication. The final presentation explores how ACP differs by race, ethnicity and ADRD status using data from the 2018 Wave of the Health and Retirement Study. Future directions for implementation of these innovations for improving ACP communication among caregivers and persons with ADRD will be discussed.

Equitable implementation of innovations to promote successful aging in place.

Equitable implementation of innovations to promote successful aging in place.

The prevalence and types of advance care planning use in patients with advanced cancer: A retrospective single-centre perspective, Australia

Objectives: In Australia participation rate in Advance Care Directives is 14%, and research is limited on Advance Care Planning (ACP) invitations and uptake among the patients with advanced cancer (PwAC). This study identifies the prevalence and types of documented ACP discussions in PwAC who died within two or four weeks of receiving chemotherapy. Design: A retrospective audit was conducted. Statistical analysis was calculated in SPSS. Difference in ACP invitation and utilization between three groups [control, <2-weeks, and –4 weeks] was measured by Kruskal–Wallis and Chi-square (or Fisher-Exact) tests. Post-hoc follow-up pair-wise comparisons were performed. Adjusted prevalence ratios were estimated using two logistic regression models. Setting: This study was conducted in XXX Coast University Hospital, Australia. Participants: The records of 339 patients were examined and 320 patients were found eligible. Results: Of the 320 PwAC [male: 55%; median age: 65 years], 227 (71%) received ACP invitation, and among the invited patients, 89% used Acute Resuscitation Plan; 54% used Enduring Power-of-Attorney; and 20% completed Advance Health Directives. From 7.5% [n = 24] of the patients who received chemotherapy in their last 2-weeks of life, 42% had not received an ACP invitation, 29% didn’t have Acute Resuscitation Plan and only 4% completed Advance Health Directives. There were significant differences among Control, <2-weeks, and 2–4 weeks groups in completing Acute Resuscitation Plan (P = 0.003) and Advance Health Directives (P = 0.045). A significant difference was also observed between control and <2-weeks groups in number of days since Acute Resuscitation Plan used. Completing an Acute Resuscitation Plan was associated with a lower risk of dying within two-weeks of chemotherapy (OR = 0.246; P = 0.008). Conclusions: Low rates of ACP invitation and use in PwAC, especially who received chemotherapy in 2-weeks of dying confirm a need for embedding and regularly revisiting ACP framework in cancer care and educating staff, patients, and their family caregivers to increase uptake.

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.

Primary Palliative Care in Huntington's Disease.

Palliative care practices, including communication about patient-centered goals of care and advance care planning (ACP), have the potential to enhance care throughout the course of Huntington's disease (HD) and related disorders. The goal of our project was to develop a pilot program that integrates primary palliative care practices with interdisciplinary care for HD. (1) To train HD team members to facilitate goals of care and ACP conversations at all stages of HD; (2) To create materials for care planning in HD focused on patient-centered goals of care and health-related quality of life; and (3) To modify clinic workflow to include goals of care and ACP discussions. We defined planning domains to expand care planning beyond end-of-life concerns. We created a patient and family guide to advance care planning in HD. We conducted VitalTalk communications training with the HD team. We modified the interdisciplinary clinic workflow to include ACP and developed an EMR template for documentation. After communication training, more team members felt well prepared to discuss serious news (12.5% to 50%) and manage difficult conversations (25% to 62.5%). The proportion of clinic visits including advance care planning discussions increased from 12.5% to 30.6% during the pilot phase. Provision of primary palliative care for HD in an interdisciplinary clinic is feasible. Integration of palliative care practices into HD specialty care requires additional training and modification of clinic operations.

Developing a care pathway for hospital-based advance care planning for cancer patients: A modified Delphi study.

The objective of this study is to develop a care pathway for a hospital-based advance care planning service for cancer patients. A web-based modified Delphi study consulted an expert panel consisting of a convenience sample of stakeholders including professionals with a special interest in advance care planning as well as a 'public and patient involvement group'. After generating ideas for core elements of a care pathway in the first round, numerical ratings and rankings informed the multi-professional research steering group's decision process eventually resulting in a final pathway. The 41 participants in the Delphi study identified 177 potential core elements of the pathway in the first round. In two further rounds, consensus was reached on a final version of the pathway with 148 elements covering the 10 domains: prerequisites, organisation and coordination, identification and referral, provision of information, information sources, family involvement, advance care planning discussion, documentation, update and quality assurance. We propose a care pathway for advance care planning for hospital patients with cancer based on the results of a Delphi study that reached consensus on an implementation strategy. Our study pioneers the standardisation of the process and provides input for further policy and research with the aim of aligning cancer patients' care with their preferences and values.

Knowledge and Attitudes of Allied Health Professionals Towards End-Of-Life and Advance Care Planning Discussions With People With COPD: A Cross-Sectional Survey Study.

Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting condition. End-of-life (EOL) and Advance Care Planning (ACP) discussions are essential, yet access and support remain inadequate. Allied health professionals (AHPs) commonly have ongoing relationships with patients and opportunities to discuss care outside acute crises as is considered best practice. Australian and New Zealand AHPs were invited to complete an anonymous, online, cross-sectional survey that aimed to explore knowledge, attitudes and practices, and associated perceived triggers and barriers to EOL and ACP discussions with patients with COPD. Closed survey responses were summarized descriptively and free-text thematically analysed. One hundred and one AHPs (physiotherapists, social workers and occupational therapists) participated. Many held positive attitudes towards ACP but lacked procedural knowledge. Half (50%) of participants routinely discussed EOL care with patients when perceiving this to be appropriate but only 21% actually discussed ACP with the majority of their patients. Many cited lack of training to engage in sensitive EOL discussions, with barriers including: 1) clinician lack of confidence/fear of distressing patients (75%); 2) perceived patient and family reluctance (51%); 3) organizational challenges (28%); and 4) lack of role clarity (39%). AHPs commonly have ongoing relationships with patients with chronic conditions but lack the confidence and role clarity to utilise this position to engage ongoing EOL and ACP discussions. While AHPs may not traditionally consider EOL and ACP discussions as part of their role, it is crucial that they feel prepared to respond if patients broach the topic.

Prevalence of Advanced Care Planning in Emergency General Surgery: Do We Know Our Patient’s Goals?

INTRODUCTION: Advanced care planning (ACP) promotes the delivery of goal-concordant, patient-centered surgical care. There is opportunity to increase ACP adoption in surgery. We hypothesized that, on the emergency general surgery (EGS) service, most patients were not engaged in ACP discussions. METHODS: All patients admitted to the EGS service in 2019 were included. The primary outcome was having electronic health record ACP documentation (advance directive, physician order for life-sustaining treatment form [POLST], or ACP note). Multivariate analysis was conducted to identify predictors of ACP. RESULTS: Among 734 patients, the prevalence of ACP on admission was 15% (n = 109), and the prevalence of ACP completed during the hospitalization was 6% (n = 44). Only 27% (n = 12) of inpatient ACP was completed in the hospital before EGS procedures. Most documentation included advanced directives and POLST uploaded before admission (60%, n = 93), and 39 (22%) constituted ACP notes by the surgical team. Multivariable analysis demonstrated increasing age, Medicaid or Medicare insurance, increased length of stay, and institution-concordant primary care were associated with an increased odds of having ACP (Fig. 1); low English language proficiency, an increasing neighborhood deprivation index, and a higher Charlson Comorbidity score were all associated with lower odds of having ACP documentation (Fig. 1).Figure 1CONCLUSION: Integration of ACP for patients receiving EGS care is limited, with significant variation in terms of type of documentation. Little documentation is done in the context of their acute surgical condition. Further study is needed to identify opportunities and barriers to increasing ACP uptake into EGS workflows.

Development of an Advance Care Planning Portal-Based Tool for Community-Dwelling Persons Living With Cognitive Impairment: The ACPVoice Tool.

Background: Patient portals can be an innovative and efficient way to engage patients in advance care planning (ACP). However, comprehension and judgment in older adults with cognitive impairment presents several barriers and challenges to engaging in new technology. Our objective was to develop an ACP portal-based tool (ACPVoice) for community-dwelling persons living with cognitive impairment (PLCI) by engaging end-users in the design process. Methods: Two rounds of cognitive interviews were conducted to identify and resolve cognitive issues related to comprehension, judgment, response, and to assess content validity. Purposive sampling was used with the goal of enrolling 15 different participants (five with mild cognitive impairment and five dyads (those with mild dementia and their care partner) in each round to assess respondents' understanding of questions related to advance care planning to be administered via the patient portal. Results: Twenty PLCI (mean age 78.4, 10 females [50%]) and ten care partners (mean age 60.9, 9 females [90%]) completed cognitive interviews between May 2021 and October 2021. The mean Mini-Mental State Examination score for PLCI was 25.6 (SD 2.6). Unclear wording and undefined vague and/or unfamiliar terms were the major issues identified. Revisions to item wording, response options, and instructions were made to improve question comprehension and response as well as navigational ease. Conclusion: Minor changes to the wording, format, and response options substantially improved respondents' ability to interpret the item content of the ACPVoice tool. Dissemination and implementation of the ACPVoice tool could help to engage community-dwelling PLCI in ACP discussions.

An age-friendly population health dashboard geolocating by clinical and social determinant needs.

An age-friendly population health dashboard geolocating by clinical and social determinant needs.

Impact of Chronic Conditions, Healthcare Utilization, and Demographics on Advance Care Planning.

Context: Unraveling the intricacies of what factors influence advance care planning (ACP) is an ongoing research challenge. Research shows much ACP is crisis-based and takes place at the end of life. Complicating this late-stage approach may be demographic differences based on race, ethnicity and socioeconomic status. Objective: We examined the relationship between demographic factors, chronic health conditions, and healthcare utilization in predicting who was most likely to engage in ACP activities, including designating a durable power of attorney for healthcare (DPOAHC), having a living will, and discussing wishes with family or others. Methods: We conducted a secondary analysis using 2018 Health and Retirement Study (HRS) exit data provided by a proxy for the deceased participant that matched the 2016 survey participant data (N = 884). Generalized linear mixed models were used for the analysis. Results: The number of chronic health conditions and healthcare utilization were not associated with ACP activities, but several of the demographic variables showed strong associations. Participants who were female, white, older, and from a higher socioeconomic status were more likely to have engaged in ACP. Conclusion: People continue to defer ACP discussions and documentation end of life or when facing medical crises. More needs to be done to reach out to younger adults, racial minorities, and those with lower socioeconomic status to encourage them to engage in ACP.

Provider-led advance care planning in community oncology: A successful multidisciplinary quality improvement intervention.

209 Background: Advanced care planning (ACP) is an important aspect of shared decision making in cancer treatment. Due to its importance, in 2016, Medicare expanded coverage and reimbursement for advance care planning (ACP) services (CPT codes 99497 and 99498). Despite this, ACP has been underutilized in practice. Methods: Tennessee Oncology aimed to increase knowledge and utilization of this service by medical oncologists and advance practice providers and corresponding CPT codes through an educational and quality improvement project. We formed a multidisciplinary team with individuals representing medical oncology providers, palliative care team, billing and accounting, information technology and informatics, nursing, navigation team, and operations. This team created an educational video, incorporating the “PAUSE” framework for addressing advance care planning and its role in community oncology, and details of documentation and billing. We also built in documentation templates into the medical oncology note and created a process to automate the charge capture to avoid additional steps for oncology providers. Results: Prior to this initiative, there was no baseline method to measure ACP and corresponding documentation. After two months of launching our educational video and new documentation templates, 120 documented ACP discussions were completed. ACP documentation was performed by 61 total providers practicing across 16 clinics. Providers completing documentation included both medical oncology (n = 53, 86%) and palliative care (n = 8). Of medical oncology providers, 39 (73%) were physicians and 14 (27%) were advanced practice providers. The three most common cancer diagnoses in ACP encounters were lung (20%), breast (13%), and prostate (8%). Conclusions: This combination of education and automation with multidisciplinary team input helped establish a baseline for ACP measurement that will help identify gaps and improve ACP discussions and documentation in our practice going forward.

Older Adults' Behavioral Intentions Toward Advance Care Planning Based on Theory of Reasoned Action.

This study aimed to explore the factors affecting the behavioral intentions of older adults toward advance care planning (ACP). A questionnaire survey was conducted at 2 medical wards and a senior activity center in northern Taiwan. Four hundred one participants were older adults aged over 65 years, comprising hospitalized patients, their caregivers, and members of a senior activity center. The regression model revealed that participant type (patient, caregiver, or community resident); financial support; discussion of ACP with family; and knowledge, attitudes, and subjective norms accounted for 46.3% of the variance in behavioral intentions. The behavioral intention of caregivers was higher than that of patients. The behavioral intention of participants who were financially dependent on the family was lower than that of pensioners. Regarding discussing ACP with family, older adults in the contemplation and preparation stages score higher on behavioral intention than those in the precontemplation stage. This study supports the theory of reasoned action. Older adults' ACP knowledge and attitudes need to be enhanced through education. Caregivers' behavioral intentions tend to perform ACP. Sharing their caring experiences may be a strategy for promoting ACP. Older adults' financial status affects their behavioral intentions. Therefore, financial planning should be performed early and should incorporate ACP.

Development and feasibility of a communication training to assist caregivers with advanced care planning.

Caregivers are critical in advanced care planning (ACP) discussions, which are difficult but necessary to carry out patients' goals of care. We developed and evaluated the feasibility and acceptability of a communication training to equip caregivers of patients with malignant brain tumors with skills to navigate ACP conversations. Caregivers completed a 2-h virtual training addressing ACP Discussions with Your Loved One and ACP Discussions with the Medical Team. A pre-training assessment was completed at baseline and a training evaluation was completed one day post-training. A subset of participants completed semi-structured interviews 2 months post-training. Of 15 caregivers recruited, 9 attended the training and 4 completed qualitative interviews. Post-training, 40% felt confident in discussing ACP with loved ones and 67% felt confident doing so with healthcare professionals; 100% reported feeling confident in using skills learned in the training to facilitate these conversations. Data from qualitative interviews highlighted additional benefits of the training in empathic communication skills and fostering social support. Our communication skills training shows promise in supporting caregivers' skills and confidence in engaging in ACP discussions with patients and healthcare providers. A future randomized controlled trial with a larger and more diverse caregiving sample is needed to determine training efficacy.

Gynecologic oncology patient perspectives and knowledge on advance care planning: A quality improvement intervention

ObjectivesAssess and improve advance care planning (ACP) awareness and uptake among gynecologic oncology patients. MethodsUsing a quality improvement Plan-Do-Check-Act framework, we completed a single institution needs assessment and intervention. The needs assessment was a 26-question survey assessing baseline ACP knowledge and preferences of gynecologic oncology patients. We used this survey to implement an outpatient intervention in which patients were offered ACP resources (pamphlet, discussion with their gynecologic oncologist, and/or social work referral). We conducted a post-intervention survey among patients who had and had not received ACP resource(s) to assess whether our intervention increased ACP knowledge, discussions, or uptake. ResultsAmong 106 patients surveyed in the needs assessment, 33 % had ACP documents, 26 % had discussed ACP with a physician, and 82 % thought discussing ACP was important. The majority preferred these conversations in the outpatient setting (52 %) with their gynecologic oncologist (80 %) instead of nurses or trainees. In the intervention, 526 patients were offered ACP resources. Compared to women who did not receive resources (n = 324), patients who received ACP resource(s) (n = 202) were more likely to have ACP discussions with their gynecologic oncologist (38 % vs 68 %, P = 0.001) and had greater proficiency regarding how to create ACP documents (median score 5/10 vs 8/10, P = 0.048), although they were no more likely to have ACP documented in their electronic medical record (27 % vs 9 %, p = 0.08). ConclusionsACP uptake among gynecologic oncology patients is low, but ACP discussions with an oncologist during outpatient visits are important to patients and improve their knowledge regarding completing ACP documents.

Advance Care Planning and Communication Skills Improve after an Interprofessional Team Simulation with Standardized Patients.

Background:Improving rates of advance care planning (ACP) and advance directive completion is a recognized goal of health care in the United States. No prior study has examined the efficacy of standardized patient (SP)-based student interprofessional ACP trainings.Objectives:The present study aims to evaluate an interprofessional approach to ACP education using SP encounters.Design:We designed a pre–post evaluation of an innovative interprofessional ACP training curriculum using multimodal adult learning techniques to test the effects of completing ACP discussions with SPs. Three surveys (pre-training T1, post-training T2, and post-clinical encounter T3) evaluated student knowledge, Communication Self-Efficacy (CSES), ACP self-efficacy, and interprofessional teamwork (using SPICE-R2).Setting/Subjects:Students from the schools of medicine, nursing, and social work attended three training modules and two SP encounters focused on ACP.Measurements/Results:During academic year 2018–2019, 36 students participated in the training at University of Maryland. Results demonstrated statistically significant improvements in ACP self-efficacy, MT1 = 2.9 (standard deviation [SD]T1 = 0.61) compared with MT3 = 3.9 (SDT3 = 0.51), p < 0.001, and CSES, MT1 = 4.6 (SDT1 = 1.35) versus MT3 = 7.3 (SDT3 = 0.51), p < 0.001, from T1 to T3. There was a medium-to-large improvement in knowledge from an average score of 4.3 (SD = 1.0) at T1 to an average score of 5.5 (SD = 1.4) at T2, p = 0.005, d = 0.67.Conclusions:Our interprofessional training module and SP encounter was successful in improving medical, social work, and nursing students' self-reported communication skills and knowledge regarding ACP.

"I Wish Someone had Asked Me Earlier"-Perspectives on Advance Care Planning in Surgery.

"I Wish Someone had Asked Me Earlier"-Perspectives on Advance Care Planning in Surgery.

Lessons learned from a social worker’s approach to advance care planning discussions with Chinese-immigrant oncology outpatients

Purpose To examine Chinese-immigrant cancer patients’ openness to advance care planning (ACP) in an outpatient oncology setting. Design Retrospective review of social work assessment data. Sample 150 Chinese-immigrant patient charts were reviewed (55% Cantonese, 45% Mandarin). Methods Data were summarized descriptively and with logistic regression analyses. Findings Sixteen percent of patients had completed ACP prior to meeting with the oncology social worker (OSW). Twenty percent of patients agreed to complete a health care proxy (HCP) after receiving culturally-tailored education in their language of origin from the OSW, while 75% remained open to ongoing consideration of ACP and HCP completion. Conclusions This study illuminates how Chinese immigrants engage in ACP discussions in an oncology setting. Implications for psychosocial provider OSWs can play an integral role in advocating, educating, and intervening with this population and can assist the interdisciplinary team in understanding the importance of the cultural differences, even if the OSW’s primary language differs from that of a patient’s.

Front-Line Hospice Staff Perceptions of Barriers and Opportunities to Discussing Advance Care Planning With Hospice Patients and Their Families.

To understand the facilitators and barriers to hospice staff engagement of patients and surrogates in advance care planning (ACP) conversations. Qualitative study conducted with purposive sampling and semistructured interviews using ATLAS.ti software to assist with template analysis. Participants included 51 hospice professionals (31 clinicians, 13 leaders, and 7 quality improvement administrators) from 4 geographically distinct nonprofit US hospices serving more than 2700 people. Interview domains were derived from the implementation science framework of Capability, Opportunity, Motivation, and Behavior (COM-B), with additional questions soliciting recommendations for behavior change. Differences in themes were reconciled by consensus. The facilitator, barrier, and recommendation themes were organized within the COM-B framework. Capability was facilitated by interdisciplinary teamwork and specified clinical staff roles and inhibited by lack of self-perceived skill in engaging in ACP conversations. Opportunities for ACP occurred during admission to hospice, acute changes, or deterioration in patient condition. Opportunity-related environmental barriers included time constraints such as short patient stay in hospice and workload expectations that prevented clinicians from spending more time with patients and families. Motivation to discuss ACP was facilitated by the employee's goal of providing personalized, patient-centered care. Implicit assumptions about patients' and families' preferences reduced staff's motivation to engage in ACP. Hospice staff made recommendations to improve ACP discussions, including training and modeling practice sessions, earlier introduction of ACP concepts by clinicians in prehospice settings, and increasing workforce diversity to reflect the patient populations the organizations want to reach and cultural competency. Even hospice staff can be uncomfortable discussing death and dying. Yet staff were able to identify what worked well. Solutions to increase behavior of ACP engagement included staff training and modeling practice sessions, introducing ACP prior to hospice, and increasing workforce diversity to improve cultural competency.

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Background and AimsEnd-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning (ACP) guide—increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.