AbstractAdvance Care Planning Research Articles

PRAGMATIC IMPLEMENTATION OF AN ADVANCE CARE PLANNING INTERVENTION: FINDINGS FROM SHARING CHOICES

Abstract Advance care planning (ACP) is defined as a key task in ambulatory care for patients to share values, goals, and preferences for future medical care. Ideally ACP is revisited throughout the course of serious illness and engages family in discussions with clinicians. Most interventions, however, have not targeted primary care as a setting for ACP but have instead targeted a specific illness, conversation or setting such as the inpatient hospital or nursing home. Additionally, family is often not included in ACP discussions. This symposium will discuss critical components of the SHARING Choices cluster-randomized pragmatic trial, including the setup, monitoring, and analysis of this intervention within two primary care health systems located in the Baltimore-Washington DC metropolitan corridor. Each presenter will discuss key efforts conducted during the trial that highlight challenges, lessons learned, and novel approaches of embedding an evidence-based intervention within usual care settings targeting older adults 65 years of age and older. Preliminary analyses indicate that the ACP intervention was highly effective for increasing the likelihood of having advance directives in the patients’ electronic health records within 1-year of intervention initiation (odds ratio = 2.88, p < 0.001). Attendees of this symposium will take away relevant insights for implementing effective ACP and communication interventions within primary care settings as well as supporting outcome data. Our discussant will provide thoughts on the implications of these results for current primary care organizations and in the field of ACP and communication for older adults including those with dementia.

THE ROLE OF SELF-EFFICACY IN ADVANCE CARE PLANNING: DOES RACE AND ETHNICITY AFFECT THIS RELATIONSHIP?

Abstract Advance care planning (ACP) has been identified as essential in improving end-of-life patient satisfaction and goal-concordant care. Despite the benefits of ACP, rates remain particularly low among marginalized populations. Marginalized populations are also at an increased risk of receiving care incongruent with their wishes and reporting low-quality end-of-life care. ACP is a complex process where individuals must decide to plan and implement those plans. Because the ACP process is complex, an individual’s self-efficacy- or belief that they can perform a particular task, may be an important component when predicting ACP completion. Using data from the 2018 wave of the Health and Retirement Study (HRS), the current study aimed to understand how two facets of self-efficacy- mastery and constraint-, related to varying levels of ACP completion (living will, durable power of attorney for healthcare, and advance care planning discussions (DPAHC)). Furthermore, we looked at the possible moderating effects of race/ethnicity between self-efficacy and ACP. Results indicated that Black and Hispanic older adults are significantly less likely to complete all types of ACP. Furthermore, higher self-reported constraint- was significantly related to lower completion of ACP discussions (OR = 0.9, p= .05). Neither mastery or constraint were related to completion of a living will or DPAHC. Race/ethnicity was not found to moderate the relationship between self-efficacy and any level of ACP. Individual variables may be less important than community level variables or life-long discrimination when assessing completion of ACP among marginalized populations.

SOCIODEMOGRAPHIC DIFFERENCES IN ADVANCE CARE PLANNING AMONG OLDER LESBIAN AND GAY ADULTS

Abstract Advance care planning (ACP) is a process that supports adults at any stage of health in ensuring that their values, goals, and wishes are met regarding future medical care. Factors associated with completing ACP include older age, being White, higher education, and higher socioeconomic status. However, scant research has investigated if these same characteristics are associated with ACP among lesbian and gay adults. Using data from an online survey (N=139), bivariate analyses were conducted to investigate predictors of ACP outcome measures. Being White (p<.01), older (p<.01), and employed (p<.05) were associated with having a higher level of comfort with medical decision making. Having a higher income (p<.01), being employed (p<.01), and having a health condition (p<.05) were associated with having completed a living will. Having a higher income (p<.01) and being employed (p<.05) were associated with having a durable power of attorney for healthcare. These outcomes demonstrate that while some variables were similar to previous findings, additional sociodemographic characteristics were found to have an influence on ACP among older lesbian and gay adults. Given that completing ACP has shown to improve quality of care at end of life, it is imperative to understand what factors influence ACP for older lesbian and gay adults. Understanding these within group differences will lead to future research and outreach efforts developed to inform and equip healthcare workers and community organizations with the means to better serve older gay and lesbian adults, a group that has been historically discriminated against by the healthcare system.

AN EDUCATIONAL PROGRAM IN ASSISTED LIVING TO INCREASE STAFF SELF-EFFICACY IN PROVISION OF DEMENTIA PALLIATIVE CARE

Abstract Advance care planning among persons with dementia, their family members and staff in assisted living (AL) communities can facilitate meeting care preferences. In a recent NIH Stage 1a feasibility cluster randomized trial in AL communities (N=118 residents with dementia, 23 staff; k=10 ALs). The Palliative Care Education in Assisted Living for Dementia Care Providers (PCEAL-DCP) intervention showed an increase in documentation of ACP discussions (e.g., completion of advance directives, having goals of care discussions with family) in the treatment group from 12% to 51% compared to control group (8% to 23%) from baseline to six-months (effect size 0.86, Cohen’s d statistic). The current study is an NIH Stage 1b pilot using the same sample to test staff self-efficacy as a mechanism and if staff self-efficacy mediates the effects of increased documentation of ACP discussions. The measure of staff self-efficacy includes two self-reported survey items at pre- and post-intervention (baseline and one-month) that asks them how much they agree with their ability to provide care for terminally ill persons and terminally ill persons with dementia (completely agree, somewhat agree, completely disagree). Descriptive results indicate a larger increase for the treatment AL staff from baseline to one month for the percentage who completely agreed with both items. For the item specific to providing care for terminally ill persons with dementia, the treatment group was 47% baseline to 84.6% one-month compared to 66% baseline and 50% control group. Results for mediation between staff-self efficacy and ACP will be discussed.

Advance care planning readiness for Chinese older people: An integrative review and conceptual framework

Abstract Advance care planning is a process of discussion in which patients can communicate their end-of-life care preferences to family members and health care providers for consideration. Readiness for advance care planning is a patient’s preparedness to engage in advance care planning. This review aims to develop the conceptual framework for advance care planning readiness for Chinese older people. The current knowledge from the published studies was identified and synthesized by an integrative review. The conceptual framework was developed based on the social-ecological model and the theory of planned behavior. The factors from the social environment/community, health care professionals, and individual/family layers were defined. These factors may influence an individual’s medical decision-making, which in turn triggers individual behavioral mechanisms that arise from interactions between motivations, attitudes, and beliefs. Relevant factors should be considered when assessing the behavior of personnel engaged in advance care planning or formulating appropriate intervention measures to improve advance care planning participation in China. This framework can be used to guide studies that explore how the social/familial/individual factors predict the readiness for advance care planning among Chinese older people, and to design intervention studies to test the effect of family function on the readiness for advance care planning.

DIFFERENCES IN ADVANCE CARE PLANNING AMONG RACIAL AND ETHNIC MINORITIES AND PERSONS WITH ADRD

Abstract Advance care planning (ACP) is an important process to enable individuals to make their preferences known in the event of dementia onset. Racial and ethnic minorities have an increased risk of developing dementia. Understanding more about ACP differences by race and dementia status will help improve ACP communication among minority populations. For the current study the 2018 wave of the Health and Retirement Study (N=8,663) to test the relationship between dementia status and ACP and if there were differences by race. Findings indicated that both African Americans and Hispanics are less likely to have completed ACP than non-Hispanic Whites. In unadjusted models, having a dementia diagnosis indicated a lower likelihood of completing ACP; dementia was not significant in the final model when controlling for predisposing and enabling factors. More research on the predisposing and enabling factors that influence ACP among minority and dementia populations is needed.

Culture Differences in Advance Care Planning and Implications for Social Work Practice

Advance care planning (ACP) is the process of making plans and decisions regarding end-of-life care (EOLC) in advance while one has the physical and cognitive capacity to do so. However, even if health practitioners recognize the importance of ACP, they may be constrained by social and cultural factors in engaging their clients in ACP. This study examined cultural differences in ACP and various strategies that social workers use to initiate conversations on ACP in a range of settings. Using the case study method, we conducted in-depth interviews with 7 social workers who work in South Korea, 2 Korean-American social workers working in the Korean-American communities in the US, and 3 American social workers serving diverse populations in the US. Their practice sites include: university hospitals, day care centers, a community senior center, a nursing home, and a hospice agency. Social workers in both countries emphasized the need to build rapport with their clients early on and to empower them to take the lead in their ACP while they were still healthy. In Korean and Korean-American communities, social workers recognized their clients’ reluctance to speak about EOLC and highlighted the importance of communicating with their family due to their clients’ preference for family-centered decision-making. When doing this, a step-by-step approach in giving relevant information was recommended. We identified relationship-building, empowerment, and culturally sensitive approaches as common strategies in initiating discussions on ACP in both countries.

Training Clinic Providers on Advance Care Planning Improves Provider Self-Efficacy

Advance care planning (ACP) is a vital step to ensure patients receive and prioritize the care that best aligns with their end-of-life wishes, including discussion and documentation of an advance directive. Significant gaps in ACP among underserved populations have been well documented. Research suggests a successful strategy for increasing the communication between provider and patient about ACP is to educate clinicians on this important issue. Three, 2.5 hour training sessions were provided to healthcare staff of a large chain of older adult primary care clinics across three states. Lecture materials were created and presented by a palliative care (PC) physician and PC nurse practitioner. Presentations were held both in person and virtually. Participants were asked to complete a pre/post-training survey online which included a validated 17-item ACP Self-Efficacy Scale (Baughman, 2017), perceived barriers checklist, and additional quality improvement measures. A total of 131 providers attended one of three training sessions. 76 providers (58.0%) and 47 providers (35.9%) completed pre- and post-training surveys respectively. Scores on a 17-item validated ACP Self-Efficacy Scale were significantly higher after training (Wilcoxon signed rank test, Z= 4.42, p <.001). Participants ranked “lack of time” as the number one barrier to having ACP conversations both before and after the training, whereas “lack of training” ranked 2nd and fell to 7th after the training. These initial results suggest ACP self-efficacy among providers can be increased through a one-time training session. Previous literature has highlighted the importance of provider self-efficacy as factor in increasing ACP conversations with patients.

Failing to Plan Is Planning to Fail: Utilization of Advance Care Directives in Older Adults Living With HIV

Advance Care Planning (ACP) makes up an integral part of the care continuum, especially for those living with chronic conditions such as HIV. Little research exists to understand how intersections of race, gender, sexuality and gender identity combine to influence the choices made by older adults living with HIV regarding ACP. The Research on Older Adults with HIV (ROAH) 2 study collected data from across the US and investigated the incidence and range of ACP amongst those 50+ living with HIV. Correlational analysis indicated that being White was significantly related to having at least one directive (R=0.070, p=0.035) where being African American correlated negatively with several forms of ACP. Additionally, there were also significant relationships between being Transgender, being gay, and being a woman as to the engagement with ACP options. Further analysis explored the impact of finance, self-rated health and social support networks.

Barriers and Facilitators to Advance Care Panning Among Veterans Aging With HIV

Advance care planning (ACP) and hospice services are underutilized by patients living with HIV (PWH). Little is known about how older PWH approach ACP; the purpose of this qualitative study was to understand barriers and facilitators to ACP within the context of the patient-clinician relationship. Data are from a larger multimethod study designed to understand social determinants of health (SDH) that shape the lives and healthcare experiences of veterans aging with HIV. The sample includes 25 veterans from the Veterans Aging Cohort Study (VACS) recruited from an urban VA medical center. Semi-structured interviews were performed and analyzed using thematic analysis. Less than half of participants reported engaging in ACP. Key barriers to ACP include: fragile social ties, distrust of the healthcare system, and fear of disclosure and discrimination. We offer several recommendations for clinicians to engage in these conversations successfully and highlight the importance of considering SDH when designing interventions.

COVID-19 Risk Perceptions and Intentions to Engage in Familial Advance Care Planning: The Mediating Role of Death Anxiety

Advance care planning (ACP) is the process of communicating about end-of-life (EOL) care with loved ones. Due to the deadly nature of COVID-19, ACP is vital. Unfortunately, fewer than 30% of American patients engage in ACP. In addition to low motivation, people experiencing death anxiety (DA) similarly avoid ACP. This finding coincides with predictions from terror management theory (TMT) that people avoid DA-arousing behaviors. Guided by the theory of planned behavior (TPB) and the health belief model (HBM), we posited COVID-19 risk perceptions would be positively associated with determinants of health behavior, including intention to share and ask loved ones about EOL wishes, as well as the associated attitudes, norms, and level of perceived behavioral control regarding ACP. Guided by TMT, we posited that DA negatively mediated relationships between COVID-19 risk perceptions and these behavioral determinants. An MTurk participant sample (N = 522) completed a survey about COVID-19 risk perceptions, DA, and health behavior determinants in the context of ACP. Results indicate COVID-19 risk perceptions were rarely directly related to these determinants. However, results of PROCESS mediation models examining the role of DA in these relationships reveal a different picture. While direct relationships were rarely significant, DA negatively mediated most relationships between COVID-19 risk perceptions and behavioral determinants. Our results indicate DA demotivates EOL communication during the COVID-19 pandemic; a concerning yet important finding due to the increased importance of ACP in the context of a deadly disease like COVID-19.

Advance Care Planning

Advance care planning (ACP) is defined by the Institute of Medicine as an iterative process that involves discussing end-of-life issues, clarifying relevant values and goals of care, and embodying preferences through written documents and medical orders. ACP is predicated on the principle of respect for autonomy, which recognizes an individual’s right to accept or decline medical therapies. With the development of medical technologies that can sustain life (including mere physiologic existence), effective ACP has become a critical yet underused process for patients, their families, and clinicians. This review discusses the emergence of ACP, promises and pitfalls of advance directives, and promising approaches, including ACP interventions and research, as well as a focus on public engagement and future directions. Figures show a timeline of important advances in ACP since 1990, key features of the comprehensive ACP process, the three core aspects or pillars for implementation of ACP, stages of change for ACP behaviors, and two commercially available end-of-life games. Tables list theoretical pros and cons of advance directives, ACP resources, examples of recent research studies on ACP interventions, types and examples of ACP resources, and public engagement campaigns. This review contains 5 figures, 12 tables, and 101 references Keywords: Advance care planning, advance directive, end-of-life

Advance Care Planning

Advance care planning (ACP) is defined by the Institute of Medicine as an iterative process that involves discussing end-of-life issues, clarifying relevant values and goals of care, and embodying preferences through written documents and medical orders. ACP is predicated on the principle of respect for autonomy, which recognizes an individual’s right to accept or decline medical therapies. With the development of medical technologies that can sustain life (including mere physiologic existence), effective ACP has become a critical yet underused process for patients, their families, and clinicians. This review discusses the emergence of ACP, promises and pitfalls of advance directives, and promising approaches, including ACP interventions and research, as well as a focus on public engagement and future directions. Figures show a timeline of important advances in ACP since 1990, key features of the comprehensive ACP process, the three core aspects or pillars for implementation of ACP, stages of change for ACP behaviors, and two commercially available end-of-life games. Tables list theoretical pros and cons of advance directives, ACP resources, examples of recent research studies on ACP interventions, types and examples of ACP resources, and public engagement campaigns. This review contains 5 highly rendered figures, 5 tables, and 100 references.

Advance Care Planning for Patients with New Serious Illnesses after Medicare’s New Payments

Advance Care Planning (ACP) supports adults to understand and communicate their values and wishes for future medical care in order to ensure goal-concordant care in serious illness when patients are too ill to make their own decisions [1,2]. In recognition of the misalignment between payment for ACP and its value, the Center for Medicare &amp; Medicaid Services (CMS) authorized payment for ACP through new Current Procedural Terminology (CPT) codes (99497 and 99498) in 2016 [1].

Improving Medical and Nurse Practitioner Student Confidence and Clinical Skill in Advance Care Plan Development: A Multidisciplinary Mentorship Model.

Advance care planning (ACP) is an integral aspect of patient-centered care, however medical (MD) and Adult-Gerontology Acute Care Nurse Practitioner (AGACNP) students receive minimal education on how to facilitate ACP discussions and ultimately feel uncomfortable having these discussions with patients.1-4 The aim of this project was to increase MD and AGACNP students' perceived ability and confidence in leading ACP conversations through an ACP educational program called the Letter Project Pilot (LPP). The LPP consisted of faculty-supervised interactions in the inpatient setting during which students were able to lead ACP discussions with patients by guiding them through an advance directive worksheet that was structured in the format of a letter. Student participants were recruited from the MD and AGACNP programs associated with the academic medical center. Patients were recruited from inpatient medicine and geriatrics units at the academic medical center. At the end of the 3-month pilot, a voluntary, anonymous REDCap survey was used to evaluate 2 primary outcomes of interest:1) the association of the LPP pilot on perceived ACP skills, and 2) the perceived impact of the LPP pilot on ACP in future practice. Students perceived that their experiences positively enhanced their current ACP skills and their ability to have ACP conversations in their future practice. The results support that the LPP is a scalable, cost-effective project that increases students' perceived ability and confidence in leading ACP conversations.

Palliative Integration Into Ambulatory Oncology: An Advance Care Planning Quality Improvement Project

Advance care planning (ACP) is essential to ensuring that patient-centered end-of-life goals are respected if a health crisis occurs. Advanced practitioner barriers to ACP include insufficient time and limited confidence in discussions. The purpose of this quality improvement project was to increase advanced cancer patients’ electronic health record (EHR) documented surrogate decision maker and ACP documentation by 25% over 8 weeks. A secondary aim was to decrease patients’ decisional conflict scores (DCS) related to life-sustaining treatment preferences after a clinical nurse specialist (CNS)-led ACP session. Using the define, measure, analyze, improve, and control (DMAIC) process of quality improvement methodology, an interprofessional team led by a palliative CNS fostered practice change by (a) incorporating a patient self-administered Supportive Care and Communication Questionnaire (SCCQ) to standardize the ACP assessment, (b) creating an EHR nursing and provider documentation template, (c) offering advanced cancer patients a palliative CNS consultation for ACP review and advance directive completion, and (d) evaluating patients’ DCS through the four-item SURE tool. Of 126 participants provided with the SCCQ, 90 completed the document, resulting in a 71% return rate. Among the completed SCCQs, 37% (n = 33) requested a CNS consultation, with 76% (n = 25) returning for the ACP session. The CNS intervention yielded an average reduction of 1.4 points in SURE tool findings, a statistically significant decrease determined by a paired sample t-test. The project’s interprofessional collaboration promoted a system-wide standardized ACP process throughout ambulatory, acute, and post-hospital settings.

Take it to the resident: A model for engaging long-term stay residents in advance care planning

ABSTRACT Advance care planning involves a meaningful conversation about residents’ end of life goals with the health-care team and documenting these wishes in advance directives; however, these conversations are not taking place early enough or with strategies that allow nursing home residents’ preferences to be meaningfully integrated into care plans. This article outlines a new model that nursing home social workers can use to initiate advance care planning discussions called Take it to the Resident. This model was tested with 11 long-term stay nursing home residents. Data were collected through structured memos and field notes. Summative content analysis was utilized to analyze the data. Take it to the Resident facilitated a discussion about advance care planning and allowed residents to consider their wishes before engaging family members. Although discussions took place, some residents were hesitant to document their wishes formally through advance directives. The results of this study support the utility of continued testing of this model. Having empirically supported tools for nursing home social workers is critical to increasing advance care planning conversations and empowering residents to document their wishes.

How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study.

Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson's disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

Religiosity, Cognition, and Engagement in Advance Care Planning Among Older Adults

Advance care planning (ACP) is an important process of discussion and documentation that may help older adults receive the end-of-life care they prefer. Although existing literature predominantly finds greater self-reported religiosity to decrease the rates of ACP, a clear consensus is not yet evident. Data from 3,182 adults aged 55 and older participating in the 2012 wave of the Health and Retirement Study were used to investigate this association and examine the moderating role of cognition. Participants reporting at least one of two ACP behaviors (written instructions and assigning a health care proxy) were categorized as formal planning only, engaging in only informal discussions was categorized as informal planning, and those who completed both or none were categorized accordingly. Cognition was measured using self-reported memory change over the last two years and with objective cognitive testing scores. Using multinomial logistic regression, three forms of ACP behaviors were regressed on a religiosity/spirituality scale, the two cognition measures, and demographic and psychosocial covariates. Greater religiosity was associated with a lower likelihood of engaging in both plans compared to none (OR=0.91, 95%CI=0.84-0.97), however this effect was no longer significant with the inclusion of race. Higher cognitive scores were associated with greater odds of engaging in informal-only (OR=1.07, 95%CI=1.04-1.10) and both plans (OR=1.04, 95%CI=1.01-1.06); subjective memory change was not associated with ACP. Neither cognitive measure significantly moderated the negative association of religiosity on ACP, suggesting that the awareness of worsening memory does not undermine the tendency to avoid planning among the highly religious.

Integrated Multidisciplinary Approach to Advance Care Planning for Vulnerable Older Adults

Advance Care Planning (ACP) is increasingly recognized as a crucial step to ensure patients receive medical care that consistent with their overall goals and values; however it remains suboptimal among vulnerable older adults. The objective was to determine whether a nurse navigator led ACP pathway plus a provider-facing EMR documentation program called ACPSmart improves ACP documentation within the EMR within an Accountable Care Organization (ACO) for vulnerable older adults. This was a randomized, pragmatic, effectiveness clinical trial was conducted from November 1, 2018 to November 1, 2019, at 8 primary care practices. Patients 65 years or older within an affiliated ACO with multimorbidity plus physical impairments, cognitive impairments, and/or frailty were included. Participants were randomized to either a nurse navigator led ACP pathway (NN) or usual care (UC). The primary outcome was documentation of new ACP discussion within the EMR at 12 months along with the quality of ACP discussions. Among 759 randomized patients (379 NN / 380 UC, mean age 77.7 years), compared to usual care, the NN led ACP pathway resulted in a higher rate of ACP documentation (42.2% vs 3.7%, p<0.001). There was also higher completion rates of ACP legal forms (24.3% vs 10.0%, p<0.001), MOST forms (10.3% vs 1.1%, p<0.001), along with documentation of medical decision maker (64% vs 35%, p<0.001). The nurse navigator led ACP pathway plus ACPSmart documentation program increased documentation of ACP within the EMR. This may mitigate prior barriers to ACP and could substantially improve ACP documentation within the EMR.