scholarly journals Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

2022 ◽  
Vol 19 (2) ◽  
pp. 803
Author(s):  
Andrea Giordano ◽  
Ludovica De Panfilis ◽  
Marta Perin ◽  
Laura Servidio ◽  
Marta Cascioli ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Scoping Review ◽  
Neurodegenerative Disorders ◽  
Health Professionals ◽  
Care Planning ◽  
Randomized Controlled ◽  
Quasi Experimental ◽  
Advance Care ◽  
Almost All ◽  
Lateral Sclerosis

Advance care planning (ACP) is increasingly acknowledged as a key step to enable patients to define their goals/preferences for future medical care, together with their carers and health professionals. We aimed to map the evidence on ACP in neurodegenerative disorders. We conducted a scoping review by searching PubMed (inception-December 28, 2020) in addition to trial, review, and dissertation registers. From 9367 records, we included 53 studies, mostly conducted in Europe (45%) and US-Canada (41%), within the last five years. Twenty-six percent of studies were qualitative, followed by observational (21%), reviews (19%), randomized controlled trials (RCTs, 19%), quasi-experimental (11%), and mixed-methods (4%). Two-thirds of studies addressed dementia, followed by amyotrophic lateral sclerosis (13%), and brain tumors (9%). The RCT interventions (all in dementia) consisted of educational programs, facilitated discussions, or videos for patients and/or carers. In conclusion, more research is needed to investigate barriers and facilitators of ACP uptake, as well as to develop/test interventions in almost all the neurodegenerative disorders. A common set of outcome measures targeting each discrete ACP behavior, and validated across the different diseases and cultures is also needed.

scholarly journals ‘Traversing difficult terrain’. Advance care planning in residential aged care through multidisciplinary case conferences: A qualitative interview study exploring the experiences of families, staff and health professionals

2021 ◽  
pp. 026921632110132
Author(s):  
Suzanne Rainsford ◽  
Sally Hall Dykgraaf ◽  
Rosny Kasim ◽  
Christine Phillips ◽  
Nicholas Glasgow
Keyword(s):  
Advance Care Planning ◽  
Health Professionals ◽  
Aged Care ◽  
Shared Responsibility ◽  
Care Staff ◽  
Residential Aged Care ◽  
Care Planning ◽  
Qualitative Interview Study ◽  
Case Conferences ◽  
Advance Care

Background: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. Aim: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. Design: A qualitative study (February–July 2019) using semi-structured interviews. Setting: Two residential aged care facilities in one Australian rural town. Participants: Fifteen informants [family ( n = 4), staff ( n = 5), health professionals ( n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. Results: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The ‘conversation’ was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. Conclusion: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

scholarly journals PRagmatic trial Of Video Education in Nursing homes: The design and rationale for a pragmatic cluster randomized trial in the nursing home setting

2017 ◽  
Vol 14 (2) ◽  
pp. 140-151 ◽  
Author(s):  
Vincent Mor ◽  
Angelo E Volandes ◽  
Roee Gutman ◽  
Constantine Gatsonis ◽  
Susan L Mitchell
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
Advance Care Planning ◽  
Pragmatic Trial ◽  
Healthcare Systems ◽  
Care Planning ◽  
Home Setting ◽  
Randomized Controlled ◽  
Advance Care ◽  
Video Education

Background/Aims Nursing homes are complex healthcare systems serving an increasingly sick population. Nursing homes must engage patients in advance care planning, but do so inconsistently. Video decision support tools improved advance care planning in small randomized controlled trials. Pragmatic trials are increasingly employed in health services research, although not commonly in the nursing home setting to which they are well-suited. This report presents the design and rationale for a pragmatic cluster randomized controlled trial that evaluated the “real world” application of an Advance Care Planning Video Program in two large US nursing home healthcare systems. Methods PRagmatic trial Of Video Education in Nursing homes was conducted in 360 nursing homes (N = 119 intervention/N = 241 control) owned by two healthcare systems. Over an 18-month implementation period, intervention facilities were instructed to offer the Advance Care Planning Video Program to all patients. Control facilities employed usual advance care planning practices. Patient characteristics and outcomes were ascertained from Medicare Claims, Minimum Data Set assessments, and facility electronic medical record data. Intervention adherence was measured using a Video Status Report embedded into electronic medical record systems. The primary outcome was the number of hospitalizations/person-day alive among long-stay patients with advanced dementia or cardiopulmonary disease. The rationale for the approaches to facility randomization and recruitment, intervention implementation, population selection, data acquisition, regulatory issues, and statistical analyses are discussed. Results The large number of well-characterized candidate facilities enabled several unique design features including stratification on historical hospitalization rates, randomization prior to recruitment, and 2:1 control to intervention facilities ratio. Strong endorsement from corporate leadership made randomization prior to recruitment feasible with 100% participation of facilities randomized to the intervention arm. Critical regulatory issues included minimal risk determination, waiver of informed consent, and determination that nursing home providers were not engaged in human subjects research. Intervention training and implementation were initiated on 5 January 2016 using corporate infrastructures for new program roll-out guided by standardized training elements designed by the research team. Video Status Reports in facilities’ electronic medical records permitted “real-time” adherence monitoring and corrective actions. The Centers for Medicare and Medicaid Services Virtual Research Data Center allowed for rapid outcomes ascertainment. Conclusion We must rigorously evaluate interventions to deliver more patient-focused care to an increasingly frail nursing home population. Video decision support is a practical approach to improve advance care planning. PRagmatic trial Of Video Education in Nursing homes has the potential to promote goal-directed care among millions of older Americans in nursing homes and establish a methodology for future pragmatic randomized controlled trials in this complex healthcare setting.

Enabling Advance Care Planning in Dementia Care: A Primary Care Approach

2020 ◽  
pp. 082585972097393
Author(s):  
Linda Lee ◽  
Loretta M. Hillier ◽  
Stephanie K. Lu ◽  
Donna Ward
Keyword(s):  
Primary Care ◽  
Advance Care Planning ◽  
Health Professionals ◽  
Online Survey ◽  
Ease Of Use ◽  
Depth Information ◽  
Care Planning ◽  
Care Approach ◽  
Memory Clinics ◽  
Advance Care

Background: Lack of tools to support advance care planning (ACP) has been identified as a significant barrier to implementing these discussions. Aim: We pilot tested an ACP framework tool for use with persons living with dementia (PLWD) in primary care-based memory clinics and an Adult Day Program; this study describes user and recipient experiences with this framework. Methods: We used a mixed methods approach. Health professionals completed an online survey following pilot testing and PLWD and substitute decision makers (SDM) completed survey immediately following the ACP discussion assessing their satisfaction (5-point scale) with the framework and exploring potential outcomes. Interviews with health professionals, PLWD, and SDM were conducted to gather more in-depth information on their perceptions of the ACP framework/ discussion. Results: Surveys were completed by 12 health professionals, 13 PLWD, and 16 SDM. While PLWD and SDM were satisfied with the ACP discussion (M = 4.0/5), health professionals were minimally satisfied with the ease of use of the framework (M = 2.0/5), acceptability for patients (M = 2.4/5) and feasibility in practice (M = 1.9/5). Sixteen interviews were completed with 8 health professionals, 1 PLWD, and 7 SDM. While health professionals valued ACP, lack of time and training were identified barriers to framework use. SDM felt better prepared for future decisions and PLWD were put at ease, knowing that their wishes for care were understood. Conclusion: PLWD and SDM value the opportunity for ACP, and although health professionals identified some concerns with framework administration, they acknowledge the value and importance of ACP. Continuing efforts to refine ACP processes are justified.

scholarly journals A scoping review of nurse-led advance care planning

2021 ◽  
Author(s):  
Phyllis Whitehead ◽  
Erica Frechman ◽  
Marianne Johnstone-Petty ◽  
Jeannette Kates ◽  
Djin L. Tay ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Scoping Review ◽  
Care Planning ◽  
Advance Care

scholarly journals Efficacy of Normalisation of Advance Care Planning (NACP) for people with chronic diseases in hospital and community settings: a quasi-experimental study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarah Jeong ◽  
Peter Cleasby ◽  
Se Ok Ohr ◽  
Tomiko Barrett ◽  
Ryan Davey ◽  
...  
Keyword(s):  
Experimental Study ◽  
Chronic Diseases ◽  
Advance Care Planning ◽  
Fixed Effects ◽  
Care Planning ◽  
Community Settings ◽  
Link Type ◽  
Quasi Experimental ◽  
Advance Care ◽  
And Control

Abstract Background Advance Care Planning (ACP) has emerged to improve end-of-life processes and experiences. However, the available evidence presents the gloomy picture of increasing number of older people living with chronic diseases and the mismatch between their preferences for and the actual place of death. The study aimed to investigate the efficacy of normalisation of an Advance Care Planning (NACP) service delivered by specially trained Registered Nurses (RNs) in hospital and community settings. Methods A quasi-experimental study was conducted involving 16 sites (eight hospital and eight community sites) in Australia. Patients who were aged ≥18 years, who had at least one of nine chronic conditions, and who did not have an Advance Care Directive (ACD) were offered the NACP service. ACP was normalised as part of routine service on admission. The intervention, NACP, was a series of facilitated conversations about the components of ACP. The primary outcomes which included the completion of ACDs, and/or appointment of an Enduring Guardian (EG), were assessed in both intervention and control sites at pre and post intervention stages. Numbers of patients who completed an ACD or appointed an EG were described by count (percentage). ACD completion was compared between intervention and control sites using a logistic mixed effects regression model. The model includes fixed effects for treatment group, period, and their interaction, as well as random site level intercepts. Secondary model included potentially confounding variables as covariates, including age, sex and chronic diseases. Results The prevalence of legally binding ACDs in intervention sites has increased from five to 85 (from 0.85% in pre to 17.6% in post), whereas it has slightly decreased from five to 2 (from 1.2% in pre and to 0.49% in post) in control sites (the difference in these changes being statistically significant p < 0.001). ACD completion rate was 3.6% (n = 4) in LHD1 and 1.2% (n = 3) in LHD2 in hospital whereas it was 53% (n = 26) in LHD1 and 80% (n = 52) in LHD2 in community. Conclusions The study demonstrated that NACP service delivered by ACP RNs was effective in increasing completion of ACDs (interaction odds ratio = 50) and was more effective in community than hospital settings. Involvement of various healthcare professionals are warranted to ensure concordance of care. Trial registration The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246) on 03/10/2018. The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx

scholarly journals Advance care planning evaluation: a scoping review of best research practice

2021 ◽  
pp. bmjspcare-2021-003193
Author(s):  
Sophie Gloeckler ◽  
Tanja Krones ◽  
Nikola Biller-Andorno
Keyword(s):  
Advance Care Planning ◽  
Scoping Review ◽  
Retrospective Chart Review ◽  
Evidence Base ◽  
Future Research ◽  
Care Planning ◽  
Completion Rates ◽  
Future Care ◽  
Actual Care ◽  
Advance Care

Various indicators have been used to evaluate advance care planning, including completion rates, type of care received, and satisfaction. Recent consensus suggests, though, that receiving care consistent with one’s goals is the primary outcome of advance care planning and assessment should capture this metric. Goal concordant care is challenging to measure, and there is little clarity about how best to do so. The aim of this scoping review is to explore what methods have been used to measure goal concordant care in the evaluation of advance care planning. PubMed, Embase, PsycINFO, CINAHL and Cochrane were searched in September 2020 to identify studies that aimed to track whether advance care planning affected the likelihood of patients receiving care that matched their preferred care. 135 original studies were included for review. Studies used retrospective chart review (36%, n=49), questionnaire (36%, n=48) and interview (31%, n=42), focusing on both patients and proxies. Studies considered both actual care received (55%, n=74) and hypothetical scenarios anticipating possible future care (49%, n=66); some studies did both. While the reviewed studies demonstrate the possibility of working towards a solid methodology, there were significant weaknesses. Notably, studies often lacked enough reporting clarity to be reproducible and, relatedly, key concepts, such as end-of-life or preferred care, were left undefined. The recommendations that follow from these findings inform future research approaches, supporting the development of a strong evidence base to guide advance care planning implementation in practice.

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