AbstractAdvance Care Planning Research Articles

What Predicts Advance Care Planning Among Older Adults: Perceived Health or the Number of Chronic Conditions?

Advance care planning (ACP) is associated with improved quality of death and better end-of-life care. Studies have found that both health status and chronic illness influence rates of ACP. However, little is known about the relative association of each factor with engaging in ACP. This study aims to identify the extent to which the number of chronic conditions and self-rated health predict engaging in ACP. We used data from the Health and Retirement Study, a nationally-representative longitudinal survey of older adults. The sample consisted of 2016 core interview respondents. We conducted logistic regression models to examine the association between self-rated health and the number of self-reported chronic conditions with three dependent variables: (1) ACP engagement (n=687), (2) AD completion (n=1671), and (3) assignment of health care proxy (n=1668), while controlling for demographic characteristics,. Samples were weighted. Analysis revealed that reporting more chronic conditions was associated with higher odds of advance directive completion (OR:1.21, p<.001), ACP engagement (OR: 1.26, p<.05), and assigning medical proxies (OR: 1.32, p<.001). However, better self-reported health was associated with higher odds of having an AD (OR: 1.20, p<.05) and assigning medical proxies (OR: 1.27, p<.01). These findings suggest that greater number of chronic conditions increased the odds of having an AD, engaging in ACP and in assigning medical proxies; however, those reporting better health were more likely to have an AD and a medical proxy. Findings from this study point suggest that individuals with multi-morbidities may be more open to engaging in ACP discussions and activities.

Using the Conversation Starter Kit in Canada to Promote Resident Care Planning Discussions in Long-Term Care

Advance care planning (ACP) is still rare in Canadian long-term care (LTC) homes. Residents and their families view ACP as uncomfortable and difficult to implement, leading them to avoid these discussions. The purpose of this study was to explore the perceptions of LTC residents and their families about using an ACP tool called The Conversation Starter Kit. This study utilized a mixed methods approach. Data was collected in four LTC homes in Ontario, Canada from 78 residents and family members. Data was analyzed using thematic analysis and descriptive statistics. All participants read all sections but only 73% completed all sections of the toolkit. Participants spent an average of 52.3 minutes completing the toolkit and 36.4 minutes discussing it with their family members and/or LTC staff. Participants reported: a better understanding of ACP after using the tool (80%), that the tool helped clarify the available resources and/or choices (53%), and that they felt less apprehensive about ACP after using the tool (60%). Qualitative findings revealed many strengths (e.g., usefulness, ability to start difficult conversations, content and clarification), and weaknesses of the tool (e.g., redundant information, difficulty understanding the content and lack of information regarding medically assisted dying). Family members noted that the toolkit would have been helpful to receive earlier on in their family members’ disease trajectory, perhaps before being admitted into LTC. These study findings support the feasibility and acceptability of the tool to engage residents and family members in/; ACP discussions in LTC.

Advance Care Planning for Care-Dependent Older Persons Living at Home: A Cluster-Randomized Controlled Trial

Advance Care Planning (ACP) for care-dependent older persons living at home is an important part of care, but remains difficult to implement, mostly due to access barriers. The aim of this trial is to increase patient activation, family communication and surrogate designation through an ACP-intervention delivered by trained nurses to care-dependent clients in their homes. The intervention is evaluated in a cluster-randomised controlled trial in Germany (DRKS00016886). Primary outcome is patient activation (PAM-13); secondary outcomes cover institutionalisation, ACP-engagement and prevalence of ACP-documents. 28 home care services (HCS) with 20 trained nurses and about 340 participants have been included. First results show that patients and caregivers judged the topic and the discussion with trusted persons as important and seized the opportunity for communication. In conclusion, established relationships can be built upon to ensure access to ACP and thus to avoid involuntary treatment in situations of decisional incapacity. Part of a symposium sponsored by Systems Research in Long-Term Care Interest Group.

Evaluating an Advance Care Planning Skills Training for Medical, Nursing, and Social Work Students

Advance care planning (ACP) helps to ensure future healthcare is congruent with individual preferences. Curricula for health-focused professions rarely include ACP content. This is a repeated measures evaluation of an innovative, interprofessional student training to enhance the ability to lead ACP discussions. Outcomes were measured via self-report surveys at two timepoints (baseline = T1 [n = 35]; posttraining follow-up = T2 [n = 20]) and included validated measures of communication self-efficacy, ACP self-efficacy, and interprofessional teamwork. Data collection from a third timepoint (T3), following randomized group assignment is currently underway. The matched T1–T2 sample (N = 17) included students from medicine (64.7%), nursing (17.6%), and social work (17.6%). Participants were largely young (M=26 years), non-Hispanic (94.0%), White (59.0%), and female (71.0%). Paired t tests examined change from T1 to T2 for all outcomes. Despite worse communication self-efficacy (Mdiff=1.6, p<.001) and ACP self-efficacy (Mdiff=.92, p<.001), perceptions of interprofessional teamwork improved (Mdiff=3.0, p=.008). These T1–T2 findings mirror results from similar, prior research, which subsequently discovered that both self-efficacy outcomes and their effect sizes for change worsened at T2, but ultimately and substantially improved at T3. These fluctuations suggest participants initially overestimated their self-efficacy related to ACP at T1 and corrected their appraisals at T2. Other studies should account for this self-correction. Further replication is needed to understand the dip that appears to occur before anticipated improvements occur.

The Role of Health, Social Network, and Race in Advance Care Planning Among Medicare Beneficiaries

Advance care planning (ACP) is linked with high-quality end-of-life outcomes. However, ACP engagement level among older adults varies significantly by demographic, social, and health characteristics. In this study, we sought to identify characteristics associated with informal and formal ACP, in order to inform development of targeted education and outreach efforts that are tailored to diverse groups of older adults. The data came from a nationally representative study of Medicare beneficiaries living in communities, the National Health and Aging Trends Study (Round 8, N= 5,547). Multivariable logistic regressions were conducted to identify individual characteristics (i.e., race/ethnicity, age, gender, income, functional disability, cognitive function, perceived health, and numbers of people in social networks) associated with ACP engagement. Rates of informal ACP (talking to someone), and formal ACP, completing a healthcare power of attorney (HPOA) and a living will (LW), were 56%, 60.5%, and 56% accordingly. Logistic regression showed that individuals who were married or had a larger social network, and had higher functional impairment and health needs were significantly more likely to engage in both informal and formal ACP. However, individuals with memory problems (only informal ACP) and African Americans and Hispanics were significantly less likely to engage in both informal and formal ACP. African Americans without dementia were more likely to have completed HPOA compared with Whites. Findings suggest an important role of social network, and functional and cognitive health in ACP with implications for developing targeted outreach efforts in faith-based or social group settings, and healthcare settings.

Cultural and Institutional Considerations in Advance Care Planning in Long-Term Care Settings

Advance Care Planning (ACP) is a process that supports individual’s understanding and sharing of personal values, life goals, and preferences regarding future medical care, so that they obtain care consistent with these during serious and chronic illness. While ACP is important for all, it is especially so for people who fall outside traditional, western, heteronormative contexts (e.g. who belong to ethnic, racial and/or sexual/gender minorities). This symposium draws from research conducted by the Diversity Access Team [part of a national project iCAN-ACP Improving Advance Care Planning for Frail Elderly Canadians]. The first paper presents results from focus groups conducted with loved ones of South Asian, Chinese and Lesbian, Gay, Bisexual, and Transgender (LGBT) older adults living in care homes; issues identified as barriers include starting ACP conversations too late (“my husband has severe dementia”), lack of consideration of cultural traditions and, in the case of LGBT older adults, their non-family support networks. The second paper draws from focus groups with care home staff, implicating their own training as a barrier to assisting residents/families with ACP as well as resident, family, institutional and cultural influences. A third paper reports on an educational intervention designed to increase staff understanding of ACP and comfort in assisting residents/families with ACP. The fourth paper reports feedback received on two ACP planning tools, reflecting the importance of minority group representation in visuals and text. Together, these papers underscore the importance of taking culture into consideration in framing and discussions of fostering ACP among minority populations.

REGIONAL VARIATIONS IN ENGAGEMENT IN ADVANCE CARE PLANNING AMONG RACIALLY AND ETHNICALLY DIVERSE OLDER ADULTS

Advance care planning (ACP) has positive effects on the quality of end-of-life of older adults. Given the influence of environmental factors on health and behavioral health behaviors among older adults, geographic variations may exist in engagement in ACP. This study examined whether 1) there was a regional variation in engagement in ACP and 2) there was a racial/ethnic difference in ACP across regions (Northeast, Midwest, South, and West). Drawn from the 2012 National Health and Aging Trends Study, 2,015 Medicare beneficiaries in the U.S. were included in analyses. Results from logistic regression analysis showed that older adults living in the West (OR=1.66, p=0.003) and the Midwest (OR=1.39, p=0.032) were more likely to be engaged in ACP compared to those living in the South. African Americans (OR=0.31, p<0.001), Hispanics (OR=0.30, p<0.001), and other races (OR=0.49, p=0.04) were less likely than their white counterparts to be engaged in ACP. We also conducted four separate logistic regression analyses by regions. In the Northeast, Midwest, and South, African Americans were less likely to be engaged in ACP compared to whites. In the West, Hispanics were less likely to be engaged in ACP compared to whites. Findings from this study provide a clear picture of racial/ethnic disparities in ACP across different regions in the U.S., suggesting where to target for future interventions to improve engagement in ACP among racial/ethnic minorities. Future research should be conducted at lower levels of geographic areas to find modifiable geographic factors to improve engagement in ACP among older adults.

EXPERIENCES WITH SHARED DECISION-MAKING AND ADVANCED CARE PLANNING AMONG OLDER SPANISH-SPEAKING LATINOS

Advance care planning (ACP) helps individuals clarify their values and preferences for future care, and to communicate their wishes to loved ones, surrogate decision-makers and healthcare providers in advance of when they become unable to make healthcare decisions. Older Spanish-speaking Latino adults have among the lowest rates of advance directives a form of ACP. Shared decision-making (SDM) interventions have significantly improved outcomes for disadvantaged patients. SDM has proven to be particularly beneficial in ethnic minority populations with low literacy and low socioeconomic status groups. The aim of this study was to pilot an online SDM module delivered in Spanish to better understand experiences with ACP among older Spanish-speaking Latino adults. We recruited a sample of older Latino adults ages 56-81 who were low-income and primarily Spanish-speaking (N=20). Sixty-five percent of the sample was female. Participants were asked to complete an SDM module delivered by a physician to discuss ACP. The online module was developed by Healthwise © a national leader in SDM. Qualitative interviews were conducted to examine experiences with SDM and ACP. SDM improved awareness about ACP options and facilitated conversations with family members among participants. Results from the study demonstrated a four-step process for engaging participants in ACP including: Awareness, Initial conversations, Conversations with medical provider, and Formalizing. Interviews informed opportunities for culturally tailored interventions along different points on the continuum. This study highlights important opportunities to better understand the process-based steps and targeted interventions needed to address disparities in ACP among Spanish-speaking low-income Latinos.

NATIONAL IMPLEMENTATION OF A VHA DIFFUSION OF EXCELLENCE GOLD STATUS PRACTICE

Advance care planning (ACP) is a health behavior that requires in-depth discussions support by trained professionals and motivational strategies to promote goal-setting and actions. Group visits in the healthcare setting can effectively increase an individual’s motivation and self-efficacy for ACP. The Department of Veterans Affairs (VA) has developed the Diffusion of Excellence Initiative to identify and spread innovative practices such as Advance Care Planning via Group Visits (ACP-GV), which uses an interactive group session to engage Veterans in thinking about and planning for their future medical decisions. In these sessions, social workers, nurses, psychologists, and chaplains, facilitate group discussions to increase the chance that a Veteran’s care preferences are known and reflect with their wishes. This also can relieve trusted others of having to make these tough decisions without much guidance. In addition, ACP-GV increases the effectiveness of advance care planning through allowing Veterans to discuss and process this complex topic with their peers. To date, 36 VA Medical Centers (VAMCs) are currently adopting, implementing or sustaining this practice and more than 15,250 Veterans have attended ACP-GV sessions. In addition, another 40 VAMCs are exploring participating this practice. Of those participants, approximately 18-20% develop a new advance directive and 86% set a smart goal to take steps toward advance care planning. Continued dissemination and implementation of this innovative practice is ongoing. After the session, attendees will have practical guidance for implementation of ACP-GV discussions in integrated (VA) or fee-for-service (Medicare) settings.

PREDICTIONS OF RISK TOLERANCE ACROSS DISEASE SCENARIOS AMONG OLDER ADULTS

Advance care planning requires older adults to contemplate what kind of medical care they would prefer if faced with serious illness. Those decisions involve weighing risks of medical treatments with quality of life. The purpose of this project was to explore older adults’ tolerance for risk in medical treatment scenarios. Thirty-three adults over age 60 (mean age = 74.9, SD = 8.9) were presented with four medical scenarios reflecting increasingly severe diseases (urinary incontinence, kidney failure, dysphagia, Alzheimer disease). For each, they were asked whether they would accept a treatment with increasing risk of death (5%, 50%, 95%). Participants also recorded demographic characteristics and completed a physical and mental health measure. Older adults were more willing to accept hypothetical treatments with lower risk of death (Cochran’s Q = 27.8 - 39.0, p’s < .001), and they were more willing to accept treatments when faced with more severe diseases (Cochran’s Q = 8.7 - 29.8, p’s < .05). There were no significant associations between risk tolerance and demographic and health characteristics. These results suggest that older adults are diverse in their willingness to accept medical treatments risks, at least when presented with hypothetical medical scenarios. Medical professionals and family members who collaborate with older adults should be aware of this diversity of preferences and check assumptions based in demographic and health characteristics. Given these nuances, interventions to promote communication about medical preferences are essential to patient-centered advance care planning and medical decision making.

STARTING THE CONVERSATION: RESULTS FROM AN INTERPROFESSIONAL WORKSHOP ABOUT ADVANCE CARE PLANNING

Advance care planning is more than documenting end of life medical decisions; it should be the beginning of an important and ongoing conversation about personal values, goals, and preferences. Health profession students must be prepared to have these conversations and overcome any existing barriers to effective patient-provider communication. To this end, a multidisciplinary planning team from Marquette University and the Medical College of Wisconsin developed a 2-hour workshop directed at students in the health professions. It was designed to be highly interactive, including guided self-reflection, drawing, writing, videos, small group work, case presentations, and large group discussion. The workshop was scheduled to coincide with National Healthcare Decisions Day (April 16th). A total of 149 students participated, representing the disciplines of medicine, nursing, physician assistants, counseling psychology, speech pathology, and biomedical sciences. Feedback from both students and faculty was overwhelmingly positive, indicating interest and need for this type of program. A post-event questionnaire, which included a retrospective pre/post-test, assessed learners’ gains in knowledge and self-efficacy. Significant (< 0.001) gains were found on all measured items. Data from an electronic follow-up survey suggested the majority of participants took additional actions steps related to advance care planning in the month following the workshop. In conclusion, this is a low-cost, replicable workshop that aligns with current recommendations for advanced care planning (IOM, 2015), is well received by students and faculty in the health professions, and may serve as a springboard for increasing the number of advance care planning conversations.

ATTITUDES TOWARD AND PREFERENCE FOR ADVANCE CARE PLANNING AMONG OLDER KOREAN AMERICANS

Advance care planning (ACP), referring to a decision-making process for end-of-life (EOL) care in advance, is critical in ensuring satisfaction with care and quality of life among patients and caregivers at the EOL. However, Korean Americans consistently report lower levels of ACP engagement compared to whites, indicating their potential vulnerability at the EOL. To gain insight into strategies to address the disparity, this qualitative study explored attitudes toward and preference for ACP among older Korean Americans. We conducted three focus group interviews with 31 older Korean Americans. Through iterative data analysis process, four themes emerged: 1) moderate levels of awareness of and prior experiences with ACP: 2) favorable attitudes toward ACP, while concerned about non-compliance by children: 3) preference for natural dying without life prolonging treatments and pain: and 4) preference for physician-initiated ACP. Our findings suggest the necessity of culturally tailored approaches to promote ACP for this population.

COMMON BARRIERS AND FACILITATORS ACROSS DIVERSE DOMAINS OF AGE-RELATED PLANNING

Advance care planning (ACP) – plans that express wishes for healthcare for when a person is unable to communicate – is often studied independently of other age-related planning activities. This study explored a broad set of age-related planning activities, such as retirement, finances, aging in place, and healthcare, including ACP. We used directed content analysis to identify barriers and facilitators to age-related planning from semi-structured interviews with 38 respondents (ages 55-74). Surprisingly, a common set of structural, interpersonal, and individual barriers and facilitators emerged across domains. Barriers included competing demands, resistance from family members, and aversion to planning in general. Facilitators included exposure to planning behaviors through professional and social networks, having witnessed negative outcomes from others’ failure to plan, and a belief that planning would spare others future distress. These results reinforce the idea that ACP exists within of a set of age-related planning behaviors that share common characteristics.

Challenges of advance care planning for those with dementia

Advance care planning has many benefits for both patients and carers, therefore it is important to know how and when to start. Sarah Russell explains how to enable those living with dementia to express and document their wishes for the end of life

Advance care planning for people with dementia.

Advance care planning (ACP) provides a framework for discussing and documenting care preferences in preparation for situations in which a person loses the cognitive capacity to make decisions. It can be particularly valuable in assisting people in the early stages of living with a dementia, supported by their families, to document their preferences for care at the later stages of their illness. While the potential benefits of ACP are widely acknowledged, there remain gaps in the research evidence on ACP and challenges in implementing ACP in practice. The three recently-published studies described below address these issues.

Ethical Challenges Facing Advance Care Planning

Advance Care Planning (ACP) was introduced as a means of empowering individuals to make informed decisions regarding their health and end-of-life care. It is a way for individuals to contemplate their own personal values and to exercise autonomy. However, there is reason to believe that ACP may not be widely taken up and when adopted, may not be applied as intended. The ethical challenges facing ACP need careful study. This essay focuses on two problematic ethical aspects of ACP: 1. a strict adherence to procedural formalism, 2. an over-emphasis on individualistic autonomy, which can lead to hindrances in its implementation. These may explain both the low uptake as well as its ineffectiveness. ACP should not be a compliance exercise and implementers will need to think hard about when and how to implement ACP, given cultural and perceptual sensitivities. By discussing the concept of “narrativism” and “relational autonomy”, we provide an avenue for solving the dilemmas faced and present a scenario that is closer to the ideal of what the ACP framework hopes to achieve. This would include patient preference as well as best interest and family values. An increased uptake of ACP will be a useful health service delivery indicator, but this would also entail developing a more morally mindful and just society in a broader sense.

Engaging death: Narrative and constructed dialogue in Advance Care Planning discussions

Advance Care Planning (ACP) remains extremely low in the US, due to numerous institutional and cultural barriers and discomfort in discussing death. There is a need for guidance about how patient and healthcare providers can effectively engage in ACP discussion. Here we analyze the linguistic strategies that focus-group participants use when discussing ACP in detailed ways. Prevalent linguistic structures in effective ACP discussions were loved ones' end-of-life narratives, hypothetical narratives, and constructed dialogue. In elucidating spontaneous, unprompted approaches to effective discussion of end-of-life issues, such research can help to dislodge communicative barriers to ACP so that more people are prepared to engage the process.

Advance Care Planning—A Primer

Advance Care Planning (ACP) is the process by which individuals make decisions that can guide their future healthcare if they become incompetent. Creation of an Advance Care Plan should involve discussions with healthcare providers and substitute decision makers (SDM). ACP can assist individuals, their families, and healthcare professionals in planning for future and end-of-life (EOL) care. Recent research suggests that ACP can increase discussions about EOL preferences and improve the concordance between patient preferences and their EOL care. More than 50% of Canadians have not completed an Advanced Care Plan. This may be due to a variety of reasons, however it is possible that the community does not have enough knowledge about healthcare options that can be provided in the hospitals. Current research is focused on identifying barriers and facilitators to ACP, as well as implementing methods for incorporating it during standard medical care. Various stakeholders have identified ACP as a priority, and in order to raise awareness, April 16th has been designated as National Advance Care Planning Day in Canada

Barriers Associated with the Implementation of an Advance Care Planning Program in a Prison Setting

Advance care planning is considered a best practice within health care. However, the extent to which planning occurs within prison settings is unknown. Through the course of implementing an advance care planning (ACP) program for aging and dying offenders at a medical classification center, multiple barriers were identified that need to be addressed systemically to ensure the medical wishes of offenders were known and honored. This article will outline the barriers and the steps that were taken to create systems change to promote and sustain advance care planning.

Nursing Competencies Needed for Electronic Advance Care Planning in Community

Advance care planning implementation occurs across the world using different legislative frameworks, different language to describe both the process and the outcome, and different models to develop these plans. Many countries are in the process of developing personally controlled electronic health records. Including advance care plans as part of this record is proposed in Australia. The Electronic Advance Care Plan (eACP) in Community project aimed to develop a model that will engage community dwelling older adults with chronic lifelimiting illnesses in the process of advance care planning that is person-centred, evidence-based and has a focus of dignity of life. A systematic review was conducted to identify models of advance care planning information sharing and to examine the nurses’ role. A realist review comprising a metasynthesis of 8 qualitative studies and 9 quantitative studies was conducted. Nursing competencies need to be developed to include the medico-legal framework around advance care plan development, as well as information technology competencies and communication competencies so that nurses around the world are better informed for end-of-life care planning and practice in a digital world. - See more at: http://dl4.globalstf.org/?wpsc-product=nursing-competencies-needed-for-electronic-advance-care-planning-in-community#sthash.S3cVvh6u.dpuf