Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study

Background: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. Methods: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels. Results: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions. Conclusion: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study

Beliefs in advance care planning among Chinese Americans: Similarities and differences between the younger and older generations

The purpose of this research is to explore behavioral, normative, and control beliefs in the discussion of advance care planning (ACP) among older and younger Chinese Americans. Ethnic minority groups have been identified as less engaged in ACP and this represents an ethnic and cultural gap. Older Chinese American adults often have different beliefs and values compared to the younger generation who are more acculturated to American mainstream culture. These differences may hinder the discussion of ACP with Chinese older adults. A qualitative design was used. The Theory of Planned Behavior guided the development of the interview guide. We recruited 60 Chinese Americans. Prior experience was identified as a theme that influenced attitudes about ACP. We found that older and younger Chinese participants had different beliefs in the norm and control related to ACP discussions, but not in the belief of attitudes about ACP discussions. Both younger and older Chinese American participants believed that ACP was important and necessary. Participants in both clusters expressed that they were ready and willing to engage in ACP discussions with their family members but hesitant to initiate these discussions. The reluctance in discussing ACP with Chinese older adults may be related to the expectations and obligations of Xiao (filial piety) in Chinese culture. This study describes the similarities and differences of beliefs in ACP between older and younger Chinese Americans. We identified barriers and facilitators in behavioral, normative, and control beliefs that can be used to promote ACP for Chinese Americans

Evaluation of the advance/anticipatory care planning (ACP) facilitators training programme

This report presents an overview of the findings of the three phases of the study and assesses the degree to which the Facilitator Training Programme and Resource Pack have prepared the cohort of facilitators with the knowledge, skills and tools to deliver training initiatives in ACP to address local and regional needs

Perceptions of Residential Elders Following Facilitated Advance Care Planning

The purpose of this project was to explore the perceptions of residential elders following a facilitated advance care planning (ACP) conversation. While literature is available regarding ACP and advance directives (ADs), there is minimal knowledge of first hand experiences from those who complete ACP and live in a residential or retirement community. Five residents of a retirement community who participated in facilitated ACP conversations also participated in a focus group interview to explore their perceptions of facilitators of and barriers to ACP and completing an AD. The interview was audio recorded and transcribed verbatim. Then the transcript was reviewed for accuracy and field notes were added to preserved nuances observed during the focus group. The transcription was analyzed for themes to determine residents’ perceptions of their ACP experience. All of the residents had previously participated in some form of ACP prior to the facilitated conversation, and of interest all made changes to their documentation following the conversation. The facilitators for ACP included: future preparedness; having something in writing; feeling of comfort; communication; family involvement; advancing age; knowledge of future death; lack of fear about death; wanting to have a peaceful death; previous experience with loss of a loved one; preventing burden to families by planning ahead; and Christian faith. The barrier for ACP was uncertainty in illness. All participants agreed it was a barrier to their ACP decision-making. Implications for practice are limited to similar residential populations in a select Midwestern city. Suggestions include encouraging residents to: participate in facilitated ACP conversations, revisit the document annually, integrate ACP into an annual visit, and encourage advocate and family involvement in the ACP process

Factors influencing palliative care in advanced dementia : A systematic review

© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs. Aim: To investigate the factors influencing provision of PC services for people with advanced dementia. Methods: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data. Key findings: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning. Conclusions: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.Peer reviewe

Whose job? The staffing of advance care planning support in twelve international healthcare organizations: a qualitative interview study

Background ACP involving a facilitated conversation with a health or care professional is more effective than document completion alone. In policy, there is an expectation that health and care professionals will provide ACP support, commonly within their existing roles. However, the potential contributions of different professionals are outlined only broadly in policy and guidance. Research on opportunities and barriers for involving different professionals in providing ACP support, and feasible models for doing so, is currently lacking. Methods We identified twelve healthcare organizations aiming to offer system-wide ACP support in the United States, Canada, Australia and New Zealand. In each, we conducted an average 13 in-depth interviews with senior managers, ACP leads, dedicated ACP facilitators, physicians, nurses, social workers and other clinical and non-clinical staff. Interviews were analyzed thematically using NVivo software. Results Organizations emphasized leadership for ACP support, including strategic support from senior managers and intensive day-to-day support from ACP leads, to support staff to deliver ACP support within their existing roles. Over-reliance on dedicated facilitators was not considered sustainable or scalable. We found many professionals, from all backgrounds, providing ACP support. However, there remained barriers, particularly for facilitating ACP conversations. A significant barrier for all professionals was lack of time. Physicians sometimes had poor communication skills, misunderstood medico-legal aspects and tended to have conversations of limited scope late in the disease trajectory. However, they could also have concerns about the appropriateness of ACP conversations conducted by others. Social workers had good facilitation skills and understood legal aspects but needed more clinical support than nurses. While ACP support provided alongside and as part of other care was common, ACP conversations in this context could easily get squeezed out or become fragmented. Referrals to other professionals could be insecure. Team-based models involving a physician and a nurse or social worker were considered cost-effective and supportive of good quality care but could require some additional resource. Conclusions Effective staffing of ACP support is likely to require intensive local leadership, attention to physician concerns while avoiding an entirely physician-led approach, some additional resource and team-based frameworks, including in evolving models of care for chronic illness and end of life

Implementing advance care planning in routine nursing home care : the development of the theory-based ACP+ program

Background While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. Objectives We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. Design To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. Setting and participants Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. Methods The work was carried out by means of 1) operationalization of key intervention components identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. Results The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. Conclusions The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice

Barriers and Solutions to Advance Care Planning among Homeless-Experienced Older Adults.

Background/Objectives: Older homeless-experienced adults have low rates of advance care planning (ACP) engagement despite high rates of morbidity and mortality. To inform intervention development, we examined potential barriers and solutions to ACP engagement. Design: Cross-sectional qualitative study. Setting: We recruited adults who were homeless in the prior three years and ≥50 years of age in the San Francisco Bay Area, and recruited clinical stakeholders from a national meeting of homeless providers. We analyzed qualitative data using thematic analysis. Measurements: We conducted semistructured interviews with homeless-experienced older adults (n = 20) and focus groups with clinical stakeholders (n = 24) about perceived barriers and solutions to ACP engagement. Results: Participants considered ACP important, reflecting on deaths of people in their networks who had died. Participant-identified barriers to ACP included poor ACP knowledge, lack of familial ties and social isolation, competing priorities, avoidance and lack of readiness, fatalism and mistrust, and lack of ACP training for clinical and nonclinical staff. They identified solutions that included framing ACP as a way to provide meaning and assert choice, providing easy-to-read written documents focused on the populations' unique needs, tailoring content and delivery, initiating ACP in nonclinical settings, such as permanent supportive housing, and providing incentives. Conclusions: Both older homeless-experienced adults and clinical stakeholders believe that ACP is important, but acknowledge multiple barriers that impede engagement. By focusing on potential solutions, including capitalizing on opportunities outside of health care settings, focusing on the period after housing, and tailoring content, there are opportunities to improve ACP uptake

How do general practitioners conceptualise advance care planning in their practice? : a qualitative study

Objectives : To explore how GPs conceptualise advance care planning (ACP), based on their experiences with ACP in their practice. Methods : Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. Results : Four overarching themes in the conceptualisations of ACP were discerned: (1) the organisation of professional care required to meet patients' needs, (2) the process of preparing for death and discussing palliative care options, (3) the discussion of care goals and treatment decisions, (4) the completion of advance directives. Within these themes, ACP was both conceptualised in terms of content of ACP and/or in terms of tasks for the GP. A specific task that was mentioned throughout the discussion of the four different themes was (5) the task of actively initiating ACP by the GP versus passively waiting for patients' initiation. Conclusions : This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. A shared conceptualisation and agreement on the purpose and goals of ACP is needed to ensure successful implementation, as well as a systematic integration of ACP in routine practice that could lead to a better uptake of all the important elements of ACP

Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trial

Purpose Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care. Conclusions My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients