The purpose of this study was to investigate choice of and comfort with health care proxy among older adults (N = 240). Results indicated that choice of proxy follows a hierarchical compensation model. Perceived similarity regarding end-of-life preferences and political views were not associated with comfort with proxy; however, perceived similarity with regards to religious values was associated with comfort with proxy. Attempts to promote advance care planning and advance directives may benefit from emphasizing individuals’ choice and autonomy but also their opportunity to designate a health care proxy who they feel represents their religious values.
Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP.
Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults.
Design: Cross-sectional secondary data.
Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study.
Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables.
Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP.
Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
Background: Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders.
Methods: We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patient-run Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag "#BTSM" in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes.
Results: A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one's voice is heard; and (3) Goldilock's approach to timing-fearing ACP is too early or too late.
Conclusions: Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other's perspectives related to ACP.
BACKGROUND: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders' vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations.
AIM: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development.
DESIGN: A structured integrative review of relevant literature.
DATA SOURCES: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018.
RESULTS: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality.
CONCLUSION: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.
Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.
OBJECTIVES: The purpose of this study was to assess laypersons' attitudes and completion of advance care planning (ACP) and to examine associations with sociodemographic characteristics and health beliefs on Alzheimer's disease.
METHODS: A cross-sectional telephone survey was conducted during April and May 2017, with a sample of 514 Israeli adults, aged 18 years and above. A structured, pretested questionnaire assessing participants' awareness, attitudes, and completion of ACP, as well as health beliefs on Alzheimer's disease (subjective knowledge, susceptibility, and worry), and sociodemographic factors, was used.
RESULTS: Two-fifths of the participants had heard of at least one of the terms: advance directives or durable power of attorney. Overall, participants expressed positive attitudes toward ACP. Results of regression models showed that gender, religiosity, and subjective knowledge of Alzheimer's disease were statistically significant correlates of attitudes toward ACP. Adding health beliefs on Alzheimer's disease doubled the amount of the variance explained, from 3% to 6%.
SIGNIFICANCE OF RESULTS: Our results support the use of cognitive models of health behavior by assessing intra-personal beliefs and knowledge to understand ACP attitudes and completion. Specifically, we demonstrated the importance of knowledge of Alzheimer's disease for ACP attitudes, suggesting the importance of including a module on the topic to ACP interventions.
PURPOSE: This study aimed to determine the impact of advanced care planning (ACP) on potentially avoidable hospital admissions at the end of life (EOL) among a sample of hospice-referred patients with cancer, in order to present actionable considerations for the practicing clinician.
METHODS: This study was designed as a retrospective cohort using electronic health record data that assessed likelihood of hospital admissions in the last 30 days of life for 1185 patients with a primary diagnosis of cancer, referred to hospice between January 1, 2014, and December 31, 2015, at a large academic medical center. Inverse probability treatment weighting based on calculated propensity scores balanced measured covariates between those with and without ACP at baseline. Odds ratios (ORs) were calculated from estimated potential outcome means for the impact of ACP on admissions in the last 30 days of life.
RESULTS: A verified do-not-resuscitate (DNR) order prior to the last 30 days of life was associated with reduced odds of admission compared to those without a DNR (OR = 0.30; P < .001). An ACP note in the problem list prior to the last 30 days of life was associated with reduced odds of admission compared to those without an ACP note (OR = 0.71, P = .042), and further reduced odds if done 6 months prior to death (OR = 0.35, P < .001).
CONCLUSIONS: This study shows that dedicated ACP documentation is associated with fewer admissions in the last 30 days of life for patients with advanced cancer referred to hospice. Improving ACP processes prior to hospice referral holds promise for reducing EOL admissions.
BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is an effective advance care planning tool. However, barriers to implementation persist. In the United States, POLST program development occurs at the state-level. Substantial differences between states has left POLST implementation largely unstandardized. No peer-reviewed studies to date have evaluated state-based POLST program development over time.
OBJECTIVE: To assess and learn from the successes and barriers in state-based POLST program development over time to improve the reach of POLST or similar programs across the United States.
DESIGN: An exploratory, prospective cohort study that utilized semistructured telephone interviews was conducted over a 3-year period (2012-2015). Stakeholder representatives from state POLST coalitions (n = 14) were repeatedly queried on time-relevant successes, barriers, and innovations during POLST program development with levels of legislative and medical barriers rated 1 to 10. Interviews were transcribed and analyzed using techniques grounded in qualitative theory.
RESULTS: All coalition representatives reported continuous POLST expansion with improved outreach and community partnerships. Significant barriers to expansion included difficulty in securing funding for training and infrastructure, lack of statewide metric systems to adequately assess expansion, lack of provider support, and legislative concerns. Medical barriers (mean [standard deviation]: 5.0 [0.2]) were rated higher than legislative (3.0 [0.6]; P < .001).
CONCLUSION: POLST programs continue to grow, but not without barriers. Based on the experiences of developing coalitions, we were able to identify strategies to expand POLST programs and overcome barriers. Ultimately the "lessons learned" in this study can serve as a guide to improve the reach of POLST or similar programs.
BACKGROUND: Spinocerebellar ataxia type 1 (SCA1) is an autosomal dominant progressive neurodegenerative disease. Few studies have been conducted regarding advance care planning in this population.
OBJECTIVE: This study explores advance care planning preferences of patients with SCA1 and their association with disease progression and quality of life.
METHODS: The study examined 12 Thai patients with SCA1 from 2 families living in Thailand. The advance care plan followed a Gold Standards Framework. The 12 patients were interviewed and recorded in video. The research team evaluated neurocognitive functions as measured by the following tests; Scale for the Assessment and Rating of Ataxia (SARA), Berg Balance Score, Mini-Mental Status Examination, and Digit Span and Category Fluency. The quality of life was measured by a Short-Form Health Survey-36 (SF-36).
RESULTS: Seven of 12 patients with SCA1 rated communication ability as most important for their quality of life. Patients identified becoming a burden on their family members and ventilator dependence as the most undesirable situations. Half of the patients preferred a hospital as their last place of care. Comparing patients prefer hospital to home has significantly high median SARA (23 vs 11.5; P = .03) and low SF-36 (41.4 vs 72.4; P = .02).
CONCLUSIONS: Those patients preferring a hospital for end-of-life care exhibited more physical disability and lower quality of life than those who preferred home care. Making assisted living health-care services in the home more readily available and affordable may alleviate concerns of patients facing more severe physical challenges.
OBJECTIVE: Quality communication is an important aspect of advance care planning (ACP). This study evaluates a certification program that trains lay people in communication skills to support community-based ACP conversations.
METHODS: The program was developed with an emphasis on communication skills training. The testing of the program included ACP Guides and conversation partners, who were hospice volunteers, to assess the use of communication skills in ACP conversations. The evaluation used direct observations of conversations between trained ACP Guides and conversation partners as well as semi-structured interviews with those trained to become ACP Guides and those participating in the conversation.
RESULTS: Twenty-two ACP Guides participated in the testing phase with a retention rate of 100% completing all 4 sessions. The RELATE model of communication emerged during program development and testing. Evaluation of 15 ACP Guides having ACP conversations found that trained ACP Guides could use the RELATE model of communication to support ACP conversations.
CONCLUSION: A community-academic partnership developed an ACP Community Guides Program that trained individuals to have community-based ACP conversations. Next steps include additional testing of the program and RELATE in small numbers, especially among minority populations, to evaluate acceptability and usability of this approach.
PRACTICE IMPLICATIONS: Laypersons with concrete communication skills can facilitate effective peer-to-peer ACP conversations.
Objective: To investigate clinicians' perspectives on the factors that shape the process of advance care planning in a nursing home context.
Design: Interviews. Latent qualitative content analysis.
Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes.
Main outcome measures:
Participants' views on advance care planning (ACP) at nursing homes.
Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient's readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient's preferences and staff's and family member's views; Decision & documentation of the ACP, e.g. clear documentation in patient's medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process
Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context. Key Points Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care. Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning. The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate. The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.
Latinos are less likely to have an advance care plan, use hospice or palliative care services, and have conversations about end of life than the general population. This article describes processes and outcomes of a Latino lay health advisor advance care planning training program in eastern North Carolina. An exploratory case study was used to understand the perspectives of Latino leaders. Two Latino leaders completed an advance care planning training in 2016. Data were generated from field notes, interviews, and observations. A description of the social and contextual conditions in the study setting facilitated data analysis. The primary finding, “planting the seeds,” was the strategy that began the conversation of advance care planning. “Planting the seeds” meant introducing the topic carefully to ensure the person is ready to listen, the information will be accepted, and capacity will be gained to make informed decisions. Training Latino lay health advisors in advance care planning has the potential to eliminate health disparities.
Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities. We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained. All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.
INTRODUCTION: Advance care planning (ACP) is increasingly regarded as the best way to optimise end-of-life (EOL) care. Studies have examined a multitude of factors impacting on the lagging uptake of ACP. In the current study, we specifically focused on patient factors related to the uptake of ACP in adult cancer patients.
METHODS: A scoping review was conducted, for which we searched the CINAHL, Cochrane, MEDLINE and PsycINFO databases (January 2013-December 2018). Studies exploring patient-related factors influencing the uptake of ACP in cancer patients were eligible for inclusion.
RESULTS: Eleven papers and two overarching themes: person-related (e.g. socio-demographic) factors and "comprehension and awareness," were identified. White, well-educated patients with a support network were more likely to be involved in ACP. However, there is limited comprehension and awareness among cancer patients regarding ACP.
CONCLUSIONS: The identified themes warrant a tailored approach to ACP. With regard to person-related factors, the existing body of knowledge on health literacy, disparities and shared decision-making should be used when designing strategies to improve ACP uptake. Further, our findings regarding "comprehension and awareness" suggest that ACP should not be limited to a narrow process without acknowledging the complexity surrounding personalised cancer care near the EOL.
BACKGROUND: Advance care planning (ACP) is an essential skill for clinicians, yet trainees feel inadequately prepared to conduct ACP discussions. Optimal teaching methods and timing are unknown.
AIM: We designed a curricular intervention to expose second-year medical students to the process of ACP, aiming to improve their ACP knowledge and confidence.
DESIGN: The intervention consisted of a case-based workshop facilitated by a physician experienced in ACP ("facilitated ACP workshop"), which was added to an existing multifaceted ACP curriculum (longitudinal senior mentor program including multiple visits with a volunteer older adult, completion of an electronic ACP learning module and reflective writing exercise). The control group received the existing ACP curriculum only, while the intervention group received the existing curriculum plus the facilitated ACP workshop. Both groups completed an ACP knowledge assessment and confidence survey at the conclusion of the curriculum.
SETTING/PARTICIPANTS: Two consecutive classes of second year medical students, single academic hospital.
RESULTS: No statistically significant differences in ACP knowledge or confidence were seen post-intervention. Overall confidence with ACP tasks remained relatively low despite a multifaceted ACP curriculum.
CONCLUSIONS: Future studies should investigate longitudinal, experiential ACP learning, and seek to optimize ACP teaching strategies and timing.
Objective Advance care planning (ACP) is widely advocated to contribute to better outcomes for patients suffering from heart failure. But clinicians appear hesitant to engage with ACP. Our aim was to identify interventions with the greatest potential to engage clinicians with ACP in heart failure.
Methods A systematic review and meta-analysis. We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO for randomised controlled trials (RCTs) from inception to January 2018. Three reviewers independently extracted data, assessed risk of bias (Cochrane risk of bias tool), the quality of evidence (GRADE) and intervention synergy according to Template for Intervention Description and Replication. ORs were calculated for pooled effects.
Results Of 14 175 articles screened, we assessed the full text of 131 studies. 13 RCTs including 3709 participants met all of the inclusion criteria. The intervention categories of patient-mediated interventions (OR 5.23; 95% CI 2.36 to 11.61), reminder systems (OR 3.65; 95% CI 1.47 to 9.04) and educational meetings (OR 2.35; 95% CI 1.29 to 4.26) demonstrated a favourable effect to engage clinicians with the completion of ACP.
Conclusion The review provides evidence from 13 published RCTs and suggests that interventions that involve patients to change clinical practice, reminder systems and educational meetings have the greatest effect in improving the implementation of ACP in heart failure.
BACKGROUND: Palliative care and Advance Care Planning (ACP) are increasingly recommended for an optimal management of late-stage dementia. In Belgium, euthanasia has been decriminalized in 2002 for patients who are "mentally competent" (interpreted as non-demented). It has been suggested that advance directives for euthanasia (ADE) should be made possible for dementia patients.
OBJECTIVE: This study presents the results of an internet survey among Belgian dementia specialists.
METHODS: In 2013, the Belgian Dementia Council (BeDeCo) organized a debate on end of life decisions in dementia. Participants were medical doctors who are specialists in the dementia field. After the debate, an anonymous internet survey was organized. The participation rate was 55%. The sample was representative of the BeDeCo members.
RESULTS: The results showed consensus in favor of palliative care and ACP, although ACP is not systematically addressed in practice. Few patients with dementia have requested euthanasia, but for those who did the participants had agreed to implement it for some patients. A majority of participants (94%) believe that most patients and their families are poorly informed about euthanasia. Although most participants (77%) said they approved the Law on euthanasia, 65% said they were against an extension of the Law to allow ADE for dementia.
CONCLUSION: Palliative care and ACP are clearly accepted by professionals, although a gap between recommendation and practice remain. Euthanasia is a much more debated issue, even if a majority of professionals are, in principle, in favor of the current Law and seem to disapprove with a Law change allowing ADE for dementia. A better education for both health professionals and the lay public will be a key element in the future.
Context: Advance care planning (ACP) documentation needs to be available at the point of care to guide and inform medical treatment decision-making.
Objective: To examine concordance between self-reported completion of ACP documentation and self-reported storage of the documentation at the person's current point of care with the availability of the documentation in that person's health record.
Methods: A national multicenter audit of health records and a self-report survey of eligible audit participants in 51 Australian health and residential aged care services. The audit assessed availability of ACP documentation in the health record, whereas the survey assessed self-reported completion and storage of the ACP documentation at the person's current place of care. To ascertain concordance, survey and audit data were cross-tabulated and concordance rates and kappa statistics were calculated overall and by health care sector and ACP documentation type.
Results: The audit included 2285 people, of whom 1082 were eligible for the survey. Of 507 who completed the survey (response rate = 47%), 272 (54%) reported completing ACP documentation, of whom 130 (48%) had documentation identified in the audit. Conversely, 39 of 235 people (17%) who reported not completing ACP documentation had documentation identified (concordance rate = 64%; = 0.303, P < .001). The concordance rate increased to 79% when self-reported storage of ACP documentation at the person's current point of care was compared with the existence of the document in their health record ( = 0.510, P < .001). Concordance varied by health care setting and type of ACP documentation.
Conclusion: Discrepancies exist between self-reported completion of ACP documentation and the presence of these documents in the health records of older adults, representing a significant patient safety issue. Public education campaigns and improvements to systems for document storage and accessibility are required to support person-centered medical and end-of-life care.
CONTEXT: Little is known about how to prepare older patients for advance care planning (ACP) discussions in primary care.
OBJECTIVES: To explore older patients' perspectives and experiences on ACP discussions with family members and/or primary care clinicians.
METHODS: We conducted a qualitative interview study with 20 older patients who were involved in the clinic's ACP quality improvement initiative. We used an inductive approach to generate a coding scheme and used thematic analysis alongside a constant comparative methodology to iteratively refine emergent themes after coding the data. We used the transtheoretical behavior change model to conceptualize the process of ACP discussions, focusing on the contemplation, preparation and action stages.
RESULTS: Four key themes emerged from our analyses: (1) the relevance/importance of ACP as a whole; (2) independently conceptualizing wishes and preferences for the future; (3) the process of engagement in ACP discussions; and (4) different outcomes of ACP discussions. While patients contemplated having an ACP discussion, they needed time to conceptualize their wishes on their own before documenting wishes or engaging with others. Moving to the preparation stage, patients shared their perspectives about how to engage family members and primary care clinicians in ACP discussions and reported different outcomes of these discussions, which varied according to patients' goals for ACP.
CONCLUSIONS: Understanding how to best prepare patients for ACP discussions from patients enrolled in an ACP primary clinic quality improvement initiative may assist primary care practices in developing interventions to improve the occurrence and effectiveness of such discussions.