Barriers To Advance Care Planning Research Articles

Situation, Education, Innovation, and Recommendation: A Large-Scale Systematic Review of Advance Care Planning in the Age of COVID-19.

The COVID-19 pandemic highlighted the need for advance care planning (ACP) as a way to help mitigate the various care concerns that accompanied the healthcare crisis. However, unique obstacles to typical ACP practice necessitated the need for guidance and innovation to help facilitate these vital conversations. The aim of this systematic review was to identify the various ACP barriers and facilitators that arose during the pandemic and determine how ACP practice was affected across different contexts and among different populations. This systematic review (PROSPERO registration number: CRD42022359092), which adheres to the PRISMA guidelines for reporting systematic reviews, examined studies on ACP in the context of the COVID-19 pandemic. The review involved searches of five databases, including MEDLINE and Embase. Of the 843 identified studies, 115 met the inclusion criteria. The extracted ACP barriers and facilitators were codified and quantified. The most frequently occurring ACP barrier codes were: Social distancing measures and visitation restrictions, Uncertainty surrounding the COVID-19 prognosis, and Technological/Telehealth barriers. The most frequently occurring ACP facilitator codes were the following: Telehealth/virtual ACP platforms, Training for clinicians, and Care team collaboration. Identifying the ACP barriers and facilitators is essential for developing effective, resilient ACP promotion strategies and improving its delivery, accessibility, and acceptability.

LIFE-COURSE AND CONTEXTUAL FACTORS OF ADVANCE CARE PLANNING AMONG OLDER ADULTS WITH LIMITED INCOME

Abstract Background Cumulative disadvantage across the lifespan can lead to income, health, and advance care planning (ACP) disparities, resulting in increased caregiver decisional distress and reduced healthcare equity during times of cognitive incapacity. ACP is the process of patient and familial learning, communication, and documentation of life-sustaining care and quality of life preferences after personal reflection, but ACP rates remain lower among older adults with limited income. To better understand how life-course factors influence these low ACP rates, we aimed to explore participant perceptions of healthcare and ACP barriers and facilitators through different life stages. Methods We sampled older adults (aged 50+) with limited income from six community-based sites (N=20). Qualitative descriptive design was utilized to perform semi-structured, in-person interviews. Results Themes emerged from the inductive inclusion of in-vivo codes and the deductive application of the Cumulative Disadvantage Theory. Mean age: 64.8 years old (SD: 6.8); 11 participants identified as female (55.0%); 16 identified as Black/African American (80.0%). Four themes emerged: 1) structural, life-stage, 2) social stressors and resources, 3) individual stress responses and 4) ACP readiness. Participants’ perceptions denoted that proactive planning inequities among older adults with limited income result from the dynamic interplay of multi-dimensional stressors, protective factors, and personal stress responses. Implications: Identified themes serve as a conceptual basis for future intervention development that is responsive to traumatic life-course experiences and supportive of building ACP resilience (i.e., adapting to ACP stress and actively planning for times of cognitive incapacity), as well as policy and practice implications.

Advance care planning among older adults in Belgium with Turkish backgrounds and palliative care needs: A qualitative interview study

BackgroundData on advance care planning (ACP) among migrants in Europe is lacking. Research has shown that few older migrants in the United States perform ACP due to healthcare system distrust, collectivistic values and spirituality/religion.ObjectivesTo explore the ACP knowledge and perspectives of older Turkish-origin adults in Belgium requiring palliative care.MethodGeneral practitioners (GPs) in Brussels and Antwerp recruited Turkish-origin participants aged ≥ 65 years with palliative care eligibility for this qualitative study. A GP conducted semi-structured interviews in Turkish in respondents’ homes between May 2019 and February 2022 using a topic guide. Two researchers performed combined inductive/deductive thematic data analysis.ResultsAll 15 interviewees (average age, 79 years) lacked ACP awareness and information. Some had discussed specific end-of-life preferences (e.g. care location, burial place) with family. Still, many did not feel the need to discuss future healthcare preferences, due mainly to trust in God and family for caretaking and decision-making. Some respondents viewed ACP discussions as applicable, relieving the burden on family and enabling proactive addressing of ‘what if’ questions. Self-identified ACP barriers were fear of making wrong decisions, ‘living in the moment’ and difficulty discussing death. Facilitators were obtaining sufficient ACP information and recent family illness or death.ConclusionOur sample of Turkish-origin older adults in Belgium requiring palliative care lacked ACP knowledge. Our findings suggest that their lack of engagement in discussing end-of-life medical care planning was linked to their family dynamics and religion. The findings have implications for healthcare providers to ethnic-minority groups.

The impact of COVID on end-of-life planning views, social connection, and quality of life for low-income, older adults: A qualitative study.

Low-income, older adults are less likely than those with high income to participate in advance care planning (ACP); however, the pandemic may have influenced their views. The aim of this report was to explore the perceptions of COVID-19 related to everyday life and ACP. We embedded ACP behavior inequities within the Social Ecological Model to highlight the importance of considering social inequities within an environmental context. Using a qualitative descriptive design, twenty individual interviews were conducted. Thematic analysis consisted of multiple rounds of independent and iterative coding by 2 coders that resulted in a hierarchically organized coding system. Final themes emerged through the inductive consideration of the transcript data and the deductive contribution of our theoretical framework. Three major themes emerged: social connection, quality of life, and end-of-life planning views. COVID-19 had not changed ACP views, i.e., those with existing ACP maintained it and those without ACP still avoided planning. Low-income, older adults experienced lower social connection and quality of life during COVID-19 but did not express changes to ACP views. Our findings of the loss of regular social practices and mental health struggles may have competed with participants' perception that this crisis had little, if any, effect on ACP. While clinicians should monitor low-income, older adults for ACP barriers during COVID-19, policymakers should prioritize ACP at the systems level. We plan to use participatory research methods to explore for the minimal ACP impact, focusing on barriers to ACP opportunities.

Advance care planning among older adults of Moroccan origin: An interview-based study

ObjectiveTo explore advance care planning (ACP)-related knowledge, experience, views, facilitators and barriers among older Moroccan adults in Belgium. MethodGeneral practitioners (GPs) recruited participants for semi-structured interviews. Data were analysed using the constant comparative method. ResultsThe 25 interviewees (average age, 74 years) lacked ACP knowledge and had not discussed it with healthcare professionals. After a brief explanation, most interviewees did not find ACP useful. After more explanation with a specific example, they had fewer religious objections and were more willing to have discussions with their GPs and/or relatives. ACP barriers were a lack of knowledge, current good health, potential harm of talking about death, trust in one’s children to make care decisions and fear of worrying one’s children. Facilitators were GPs’ information provision, children’s involvement in ACP discussions and the desire to not depend on children. ConclusionMany older Moroccan adults lacked familiarity, but were willing to discuss ACP after receiving understandable concrete information. GPs should facilitate ACP discussions for these patients, ideally with adult children involved, with consideration of barriers, individual preferences and generally low educational levels. Practice implicationsGPs should provide comprehensible ACP information with case examples and consider potential barriers and facilitators in this group.

Internal Medicine Resident Barriers to Advance Care Planning in the Primary Care Continuity Clinic.

Background: While primary care providers regularly engage in Advance Care Planning (ACP) conversations, it is not well known what challenges resident physicians face to achieving this core competency. Objectives: We aimed to assess resident perceptions of barriers and potential interventions to outpatient ACP. Methods: We distributed an electronic survey to Internal Medicine and Medicine-Psychiatry residents at our institution in 2022. Questions addressed outpatient ACP barriers and potential interventions in several domains: structural issues, personal knowledge, and communication skills. We reported results using descriptive statistics and Wilcoxon rank-sum tests, comparing responses by residency year (interns vs upperyears). Likert-scale responses were dichotomized to a "not at all or slightly" vs "moderate or extreme" barrier or helpful intervention. Results: Of 149 residents, 71 completed the survey (48%). Highest scoring barriers were structural, including 1) lack of clinic time (99%), 2) need to prioritize other medical problems (94%), and 3) lack of patient continuity (62%). Highest scoring interventions included the ability to schedule dedicated ACP visits with themselves (96%) or another clinician (82%). Interns were statistically significantly less confident in their ability to conduct ACP, and more likely to report lack of knowledge (i.e., not understanding ACP, patient prognosis, or how to complete paperwork, P < .05). Conclusions: Residents report significant structural barriers to outpatient ACP, including limitations in time, continuity, and competing medical priorities, that may warrant greater program attention to interventions such as clinic schedules and work-flow. Additional trainings may be most beneficial if targeted to the beginning of intern year.

English and Spanish-speaking vulnerable older adults report many barriers to advance care planning.

Advance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates. Validated questionnaires listing patient, family/friend, and clinician/system-level ACP barriers and an open-ended question on ACP barriers. Two San Francisco public/Department of Veterans Affairs hospitals. One thousand two hundred and forty-one English and Spanish-speaking patients, aged 55 and older, with two or more chronic conditions. The open-ended question on ACP barriers was analyzed using content analysis. We conducted chart review for prior ACP documentation. We used chi-square/Wilcoxon rank-sum tests and logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation. Participant mean age was 65 ± 7.4 years; they were 74% from racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. A total of 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported at least one ACP barrier (mean: 5.6 ± 4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to "God" (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%), and mistrust (37%). Compared with those with no barriers, participants with at least one reported barrier were more likely to be from a racial/ethnic minority group (76% vs 53%), Spanish-speaking (39% vs 6%), with fair-to-poor health (48% vs 34%), and limited health literacy (39% vs 9%) (p < 0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted odds ratio=0.64, 95% confidence interval [0.42, 0.98]). English- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation. Barriers must be considered when developing customized ACP interventions for diverse older adults.

Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients

ContextParents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision. ObjectiveTo explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision. DesignQualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies. ResultsThirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory. ConclusionDespite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values.

English- and Spanish-Speaking Vulnerable Older Adults Report Many Unique Barriers to Advance Care Planning (W215A)

1.Identify common barriers to advance care planning for diverse English- and Spanish-speaking older adults.2.Recognize which vulnerable subpopulations report the most barriers to advance care planning.3.Recognize that barriers to advance care planning are associated with lower rates of ACP documentation (e.g. advance directive, POLST). Advance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates. To describe patient-reported barriers to ACP among older adults and the association between barriers and ACP documentation. We used baseline data from 1241 English and Spanish-speaking patients enrolled in two trials at two safety-net San Francisco hospitals. We used validated questionnaires to ask participants about ACP barriers using a list of patient, family/friend, and clinician/system-level barriers and an open-ended question, analyzed using content analysis. We conducted chart review for prior ACP documentation. We used Chi-square/Wilcoxon rank-sum tests and linear/logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation. Participant mean age was 65+7.4 years; they were 74% racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported ≥1 ACP barrier (mean: 5.6±4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to “God” (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%) and mistrust (37%). ACP barriers were more common among racial/ethnic minorities vs. non-minorities (76% vs. 53%), Spanish- vs. English-speakers (39% vs. 6%), and those with fair-to-poor vs. good-to-excellent health (48% vs. 34%) or limited vs. adequate health literacy (39% vs. 9%) (p<0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted OR = 0.64, 95% CI [0.42, 0.98]). English- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation.

"We Take Care of Patients, but We Don't Advocate for Them": Advance Care Planning in Prison or Jail.

To investigate correctional healthcare providers' knowledge of and experience with advance care planning (ACP), their perspectives on barriers to ACP in correctional settings, and how to overcome those barriers. Qualitative. Four prisons in 2 states and 1 large city jail in a third state. Correctional healthcare providers (e.g., physicians, nurses, social workers; N=24). Participants demonstrated low baseline ACP knowledge; 85% reported familiarity with ACP, but only 42% provided accurate definitions. Fundamental misconceptions included the belief that providers provided ACP without soliciting inmate input. Multiple ACP barriers were identified, many of which are unique to prison and jail facilities, including provider uncertainty about the legal validity of ACP documents in prison or jail, inmate mistrust of the correctional healthcare system, inmates' isolation from family and friends, and institutional policies that restrict use of ACP. Clinicians' suggestions for overcoming those barriers included ACP training for clinicians, creating psychosocial support opportunities for inmates, revising policies that limit ACP, and systematically integrating ACP into healthcare practice. Despite an increasing number of older and seriously ill individuals in prisons and jails, many correctional healthcare providers lack knowledge about ACP. In addition to ACP barriers found in the community, there are unique barriers to ACP in prisons and jails. Future research and policy innovation are needed to develop clinical training programs and identify ACP implementation strategies for use in correctional settings. J Am Geriatr Soc 66:2382-2388, 2018.

Advance care planning in rehabilitation: An implementation study.

To identify implementation and process issues that influence the implementation of an advance care planning (ACP) programme in rehabilitation settings. An ACP programme was established in an inpatient tertiary rehabilitation setting in Victoria, Australia. Rehabilitation patients with chronic illnesses were recruited and the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework used. Pre-implementation measures included: patient medical record audit of ACP discussions; and barriers and facilitators analyses. Implementation interventions were staff group educational sessions and clinical process changes. Further medical record audit was carried out to review the number of ACP conversations performed and re-evaluate ACP barriers. A total of 180 consecutive inpatients were recruited for pre- (n = 90) and post- (n = 90) implementation groups. The majority of the pre-implementation cohort were female (51%), mean age 64.2 years (standard deviation 16.4 years) and had low rates of ACP discussions (n = 9, 10%). Major ACP barriers included: lack of staff education programme, and insufficient knowledge to conduct ACP. There was a significant increase in ACP conversations performed (n = 21, 23.3%) between both groups; however, staff reported limited time and skills to perform discussions. This ACP programme is feasible, but needs robust process evaluation and longer term follow-up to assess the impact of outcomes in public hospital settings on care quality.

Health behavior change in advance care planning: an agent-based model.

BackgroundA practical and ethical challenge in advance care planning research is controlling and intervening on human behavior. Additionally, observing dynamic changes in advance care planning (ACP) behavior proves difficult, though tracking changes over time is important for intervention development. Agent-based modeling (ABM) allows researchers to integrate complex behavioral data about advance care planning behaviors and thought processes into a controlled environment that is more easily alterable and observable. Literature to date has not addressed how best to motivate individuals, increase facilitators and reduce barriers associated with ACP. We aimed to build an ABM that applies the Transtheoretical Model of behavior change to ACP as a health behavior and accurately reflects: 1) the rates at which individuals complete the process, 2) how individuals respond to barriers, facilitators, and behavioral variables, and 3) the interactions between these variables.MethodsWe developed a dynamic ABM of the ACP decision making process based on the stages of change posited by the Transtheoretical Model. We integrated barriers, facilitators, and other behavioral variables that agents encounter as they move through the process.ResultsWe successfully incorporated ACP barriers, facilitators, and other behavioral variables into our ABM, forming a plausible representation of ACP behavior and decision-making. The resulting distributions across the stages of change replicated those found in the literature, with approximately half of participants in the action-maintenance stage in both the model and the literature.ConclusionsOur ABM is a useful method for representing dynamic social and experiential influences on the ACP decision making process. This model suggests structural interventions, e.g. increasing access to ACP materials in primary care clinics, in addition to improved methods of data collection for behavioral studies, e.g. incorporating longitudinal data to capture behavioral dynamics.Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-016-2872-9) contains supplementary material, which is available to authorized users.

A Clinical Framework for Improving the Advance Care Planning Process: Start with Patients' Self‐Identified Barriers

To explore barriers to multiple advance care planning (ACP) steps and identify common barrier themes that impede older adults from engaging in the process as a whole. Descriptive study. General medicine clinic. San Francisco County. One hundred forty-three English and Spanish speakers aged 50 and older (mean 61) enrolled in an advance directive preference study. Six months after reviewing two advance directives, self-reported ACP engagement and barriers to each ACP step were measured with open- and closedended questions using quantitative and qualitative (thematic content) analyses. Forty percent of participants did not contemplate ACP, 46% did not discuss with family or friends, 80% did not discuss with their doctor, and 90% did not document ACP wishes. Six barrier themes emerged: perceiving ACP as irrelevant (84%), personal barriers (53%), relationship concerns (46%), information needs (36%), health encounter time constraints (29%), and problems with advance directives (29%). Some barriers were endorsed at all steps (e.g., perceiving ACP as irrelevant). Others were endorsed at individual steps (e.g., relationship concerns for family or friend discussions, time constraints for doctor discussion, and problems with advance directives for documentation). Perceiving ACP to be irrelevant was the barrier theme most often endorsed at every ACP step. Other barriers were endorsed at specific steps. Understanding ACP barriers may help clinicians prioritize and address them and may also provide a framework for tailoring interventions to improve ACP engagement.