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Page 1
Review
. 2024 Mar 15;12(6):667.
doi: 10.3390/healthcare12060667.

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

Affiliations
Review

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

Thomas Mayers et al. Healthcare (Basel). .

Abstract

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.

Keywords: COVID-19 pandemic; advance care planning; barriers and facilitators; older adults; systematic review.

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. 2024 Mar 13:4:100273.
doi: 10.1016/j.pecinn.2024.100273. eCollection 2024 Dec.

Measuring decision aid effectiveness for end-of-life care: A systematic review

Affiliations

Measuring decision aid effectiveness for end-of-life care: A systematic review

M Courtney Hughes et al. PEC Innov. .

Abstract

Objective: To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success.

Methods: We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449).

Results: A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards.

Conclusion: Research examining end of life care decision aid use consistently reports positive outcomes.

Innovation: This review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.

Keywords: Advance care planning; Decision aids; Dying; End-of-life care; Palliative care; Systematic review.

Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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. 2024 Mar 15:apm-23-501.
doi: 10.21037/apm-23-501. Online ahead of print.

Psychiatry and interdisciplinary pediatric palliative care: a scoping review

Affiliations
Free article

Psychiatry and interdisciplinary pediatric palliative care: a scoping review

Alison E Cress. Ann Palliat Med. .
Free article

Abstract

Background: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the most current literature based on discipline, geography, population, methodology, and themes among interdisciplinary PPC teams and the management of psychological distress in AYAs.

Methods: Using a scoping review design, a protocol was registered in Open Science Framework (https://osf. io/fb48n/). Sources for evidence included online databases (Scopus, PubMed, Embase, PsycInfo, CINAHL), Google Scholar, clinical manuals, texts, national organization webpages, and reference lists, all searched June, 2023. Interviews with content experts and authors identified additional sources. Those describing interdisciplinary palliative care (PC) and management of psychological/psychiatric distress in seriously ill AYAs, written in English, and completed in the U.S. between 2018-2023 were included. International citations were included if American literature was reviewed, or if authors described internationally developed PC standards by which American providers must practice. Clear and comprehensive data charting was completed by an independent reviewer, using a deductive approach with a standardized data-charting form developed prior to extraction.

Results: Sixty-five references met inclusion criteria. Psychologists most frequently published in the past 5 years regarding integration of their care into palliative teams. Authors wrote from eastern U.S., qualitatively studying the PC team in the oncology space. Of eight themes identified, barriers, facilitators, and interventions were most frequently reported.

Conclusions: Role delineation among PPC teams can be difficult in the management of psychological distress, due to lack of training and consistent collaboration models among cancer and non-cancer populations. Current literature highlights a large gap in psychological/psychiatric training. However, optimized pain control, routine screening of distress, open/honest/developmentally appropriate communication, and early advance care planning are interventions by which palliative providers can begin managing psychological distress in seriously ill AYAs. While the presence of psychologists and psychiatrists is widely variable among PPC teams, their expertise can vastly advance the field of PC, through collaboration, education, research, and advocacy.

Keywords: Interdisciplinary palliative care (interdisciplinary PC); adolescents and young adults (AYAs); pediatric palliative care (PPC); psychiatry; psychology.

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Meta-Analysis
. 2024 Mar 19;331(11):959-971.
doi: 10.1001/jama.2024.0276.

Primary Care Interventions to Prevent Child Maltreatment: Evidence Report and Systematic Review for the US Preventive Services Task Force

Affiliations
Meta-Analysis

Primary Care Interventions to Prevent Child Maltreatment: Evidence Report and Systematic Review for the US Preventive Services Task Force

Meera Viswanathan et al. JAMA. .

Abstract

Importance: Child maltreatment is associated with serious negative physical, psychological, and behavioral consequences.

Objective: To review the evidence on primary care-feasible or referable interventions to prevent child maltreatment to inform the US Preventive Services Task Force.

Data sources: PubMed, Cochrane Library, and trial registries through February 2, 2023; references, experts, and surveillance through December 6, 2023.

Study selection: English-language, randomized clinical trials of youth through age 18 years (or their caregivers) with no known exposure or signs or symptoms of current or past maltreatment.

Data extraction and synthesis: Two reviewers assessed titles/abstracts, full-text articles, and study quality, and extracted data; when at least 3 similar studies were available, meta-analyses were conducted.

Main outcomes and measures: Directly measured reports of child abuse or neglect (reports to Child Protective Services or removal of the child from the home); proxy measures of abuse or neglect (injury, visits to the emergency department, hospitalization); behavioral, developmental, emotional, mental, or physical health and well-being; mortality; harms.

Results: Twenty-five trials (N = 14 355 participants) were included; 23 included home visits. Evidence from 11 studies (5311 participants) indicated no differences in likelihood of reports to Child Protective Services within 1 year of intervention completion (pooled odds ratio, 1.03 [95% CI, 0.84-1.27]). Five studies (3336 participants) found no differences in removal of the child from the home within 1 to 3 years of follow-up (pooled risk ratio, 1.06 [95% CI, 0.37-2.99]). The evidence suggested no benefit for emergency department visits in the short term (<2 years) and hospitalizations. The evidence was inconclusive for all other outcomes because of the limited number of trials on each outcome and imprecise results. Among 2 trials reporting harms, neither reported statistically significant differences. Contextual evidence indicated (1) widely varying practices when screening, identifying, and reporting child maltreatment to Child Protective Services, including variations by race or ethnicity; (2) widely varying accuracy of screening instruments; and (3) evidence that child maltreatment interventions may be associated with improvements in some social determinants of health.

Conclusion and relevance: The evidence base on interventions feasible in or referable from primary care settings to prevent child maltreatment suggested no benefit or insufficient evidence for direct or proxy measures of child maltreatment. Little information was available about possible harms. Contextual evidence pointed to the potential for bias or inaccuracy in screening, identification, and reporting of child maltreatment but also highlighted the importance of addressing social determinants when intervening to prevent child maltreatment.

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. 2024 Mar 1;27(1):21-30.
doi: 10.14475/jhpc.2024.27.1.21.

End-of-Life Planning and the Influence of Socioeconomic Status among Black Americans: A Systematic Review

Affiliations

End-of-Life Planning and the Influence of Socioeconomic Status among Black Americans: A Systematic Review

Chesney Ward et al. J Hosp Palliat Care. .

Abstract

Purpose: The purpose of this systematic review is to explore end-of-life (EOL) care planning and the impact of socioeconomic status (SES) among people who identify as Black or African American.

Methods: The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) were used to guide and inform this systematic review process. The following academic electronic databases with publications that reflected the interdisciplinary fields related to the research objective were searched APA PsycINFO, CINHAL, PubMed, Scopus, and Social Work Abstracts.

Results: After the authors conducted the search, 14 articles (from 13 studies) ultimately met the criteria for inclusion. The results substantiated significant concerns highlighted in previous literature regarding SES and its relation to EOL planning, but also revealed an absence of original work and interventions to increase engagement in EOL planning among Black and African American populations.

Conclusion: Black individuals deserve an equitable EOL experience. Researchers, practitioners, and policymakers need to move towards advocacy and action to meet this important need.

Keywords: Advanced care planning; Black or African American; Social class.

Conflict of interest statement

CONFLICT OF INTEREST No potential conflict of interest relevant to this article was reported.

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Review
. 2024 Feb 21:S1525-8610(24)00053-7.
doi: 10.1016/j.jamda.2024.01.009. Online ahead of print.

An Integrative Review of the State of POLST Science: What Do We Know and Where Do We Go?

Affiliations
Free article
Review

An Integrative Review of the State of POLST Science: What Do We Know and Where Do We Go?

Elizabeth E Umberfield et al. J Am Med Dir Assoc. .
Free article

Abstract

Objectives: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research.

Design: Integrative review.

Setting and participants: Not applicable.

Methods: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization.

Results: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified.

Conclusions and implications: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes.

Keywords: Portable medical orders; advance care planning; patient outcome assessment; review [publication type].

Conflict of interest statement

Disclosure The authors declare no conflicts of interest.

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Review
. 2024 Jan 23:S0885-3924(24)00047-2.
doi: 10.1016/j.jpainsymman.2024.01.027. Online ahead of print.

Effectiveness of Dyadic Advance Care Planning: A Systematic Review and Meta-Analysis

Affiliations
Review

Effectiveness of Dyadic Advance Care Planning: A Systematic Review and Meta-Analysis

Xiaohang Liu et al. J Pain Symptom Manage. .

Abstract

Context: Making decisions regarding end-of-life care is particularly challenging for patients and their family caregivers. Studies have advocated that family involvement in advance care planning is important to provide goal-concordant care and to increase family caregivers' preparation for surrogate decision-making. However, there is a lack of evidence to examine the effectiveness of advance care planning using the patient-caregiver dyadic approach.

Objectives: To evaluate the effectiveness of dyadic advance care planning.

Methods: A literature search was systematically carried out in 7 databases from inception to March 2023. All randomized controlled trials with advance care planning interventions for mentally competent adults and their family caregivers were included. Meta-analysis was conducted for available quantitative data related to end-of-life care; Otherwise, narrative syntheses were performed.

Results: In total, 14 randomized controlled trials were included. The main contents of all interventions were summarized into five categories, namely sharing illness experience and perception, introducing knowledge about advance care planning and end-of-life care, discussing individual's/dyads' values, goals, and care preferences, addressing dyads' discordance, and providing supports to complete advance care planning behaviors. The meta-analysis showed that dyadic advance care planning had significant effects on advance directive documentation (OR = 7.58, 95% CI [1.41, 40.63], P = 0.02) and proactive communication with doctors (OR = 2.42, 95% CI [1.42, 4.12], P = 0.001). In addition, interventions may improve dyad's congruence on end-of-life care, family caregivers' confidence in surrogate decision-making, and quality of end-of-life communication.

Conclusions: This review supports that dyadic advance care planning is a promising approach to preparing patients and their family caregivers for end-of-life communication and decision-making. Given that this multifaceted process is influenced by multiple factors within the socio-cultural context, future studies are warranted to identify the barriers and facilitators to implement dyadic advance care planning in real-world settings.

Keywords: Advance care planning; decision making; end-of-life; family dyad; meta-analysis; systematic review.

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Review
. 2024 Mar:151:104678.
doi: 10.1016/j.ijnurstu.2023.104678. Epub 2023 Dec 28.

Stages of readiness for advance care planning: Systematic review and meta-analysis of prevalence rates and associated factors

Affiliations
Review

Stages of readiness for advance care planning: Systematic review and meta-analysis of prevalence rates and associated factors

Minghui Tan et al. Int J Nurs Stud. 2024 Mar.

Abstract

Background: Advance care planning has been widely recommended to respect the medical care preferences of patients in the final stages of life. However, uptake of advance care planning in healthcare settings remains suboptimal. It may be beneficial to take into account individuals' readiness for advance care planning based on the stages to change identified in the Transtheoretical Model.

Objective: To identify the measurements used to assess readiness of advance care planning based on the Transtheoretical Model, to pool the prevalence of readiness stages, and to summarize the factors affecting people's readiness for advance care planning.

Design: Systematic review and meta-analysis.

Methods: We systematically searched the databases of PubMed, EMBASE, The Cochrane Library, CINAHL, and Web of Science for relevant studies from inception to February 2023. A random effects model was used to estimate the pooled prevalence. And a narrative review on the factors associated with stages of readiness was conducted.

Results: This meta-analysis included 25 studies involving a total of 4237 individuals. The precontemplation stage was the most commonly identified stage of readiness among advance care planning behaviors (26-72 %). The prevalence of readiness stages for advance care planning varied among different types of behavior. The behavior of "talking to health care proxy/family/loved ones about thoughts on quality versus quantity of life" had the highest level of readiness among all listed behaviors, followed by "talking to health care proxy/family/loved ones about living will", "signing a health care proxy form" and "signing a living will", "signing an advance directive", as well as "talking to doctors about living will". Regarding to influencing factors, a majority of sociodemographic and clinical factors did not show consistent associations with readiness, but some studies did suggest potential links with age, health status, countries, type of assessment, core structures of the Transtheoretical Model, and intervention modalities.

Conclusions: A majority of individuals were unaware of advance care planning. There is an urgent need to promote readiness for such planning. Starting with preliminary activities such as "talking to health care proxy/family/loved ones about thoughts on quality versus quantity of life" can help initiate advance care planning. Better integration of the Transtheoretical Model and interventions into the research of advance care planning readiness are needed.

Registration: Not registered.

Keywords: Advance care planning; Readiness; Transtheoretical model.

Conflict of interest statement

Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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Review
. 2024 Jan 10.
doi: 10.1111/jan.16038. Online ahead of print.

Uncertainty in surrogate decision-making about end-of-life care for people with dementia: An integrative review

Affiliations
Review

Uncertainty in surrogate decision-making about end-of-life care for people with dementia: An integrative review

Hyejin Kim et al. J Adv Nurs. .

Abstract

Aim: To describe uncertainty in surrogate decision-making regarding end-of-life care for people with dementia using Mishel's reconceptualized uncertainty in illness theory.

Design: Integrative literature review using Whittemore and Knafl's approach.

Data sources: PubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision-making/advance care planning/end-of-life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023.

Review methods: Through systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision-making regarding end-of-life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory.

Results: First, surrogate uncertainty exists in various areas of surrogate decision-making regarding end-of-life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision-makers. Finally, research-based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited.

Conclusion: Surrogates' uncertainty in decision-making regarding end-of-life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision-making more constructively throughout the dementia trajectory.

Implications for the profession and/or patient care: The findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives.

Impact: This review contributes to healthcare professionals' understanding of surrogates' uncertainty in end-of-life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it.

Reporting method: This study adheres to the PRISMA reporting guidelines.

Patient or public contribution: No patient or public contribution.

Keywords: dementia; integrative review; palliative care; surrogate decision-making; uncertainty.

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. 2024 Jan 3;23(1):3.
doi: 10.1186/s12904-023-01327-w.

Factors related to advance directives completion among cancer patients: a systematic review

Affiliations

Factors related to advance directives completion among cancer patients: a systematic review

Mobina Golmohammadi et al. BMC Palliat Care. .

Abstract

Introduction: Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person's future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients.

Methods: A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior.

Results: Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients' age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: "Lack of knowledge of the ADs concept" and "Previous experience of the disease", the subjective norm category includes three subcategories: "Social support and interaction with family", "Respecting the patient's wishes" and "EOL care choices". Also, the category of perceived control behavior was categorized into two sub-categories: "Decision-making" and "Access to the healthcare system", as well as external factors affecting the model, including "socio-demographic characteristics".

Conclusion: The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged.

Keywords: Advance care planning; Advance directives; Cancer; Decision-making; End-of-life preference; Hospice; Nurses; Palliative care.

Conflict of interest statement

The authors declare no competing interests.

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Review
. 2023 Dec 14;11(24):3166.
doi: 10.3390/healthcare11243166.

Exploring the Holistic Needs of People Living with Cancer in Care Homes: An Integrative Review

Affiliations
Review

Exploring the Holistic Needs of People Living with Cancer in Care Homes: An Integrative Review

Stephanie Craig et al. Healthcare (Basel). .

Abstract

Up to 26% of individuals residing in care homes are impacted by cancer. This underscores the importance of understanding the holistic needs of care home residents living with cancer to enhance the quality of their care. The primary objective of this integrative literature review was to consolidate the available evidence concerning the comprehensive needs of people living with cancer in care home settings, providing valuable insights into addressing their diverse needs. An integrative literature review was conducted using a systematic approach. Extensive searches were conducted in three databases, complemented by a thorough examination of grey literature and reference lists of relevant papers. The review focused on literature published between 2012 and 2022. The screening process involved two independent reviewers, with a third reviewer resolving any discrepancies. The review identified twenty research papers that met the eligibility criteria. These papers shed light on three primary themes related to the holistic needs of care home residents with cancer: physical, psychological, and end-of-life needs. Physical needs encompassed pain management, symptom control, and nutrition, while psychological needs involved social support, emotional well-being, and mental health care. End-of-life needs addressed end-of-life care and advance care planning. These themes highlight the multifaceted nature of cancer care in care homes and underscore the importance of addressing residents' holistic needs in a comprehensive and integrated manner. Improving care home education about cancer and integrating palliative and hospice services within this setting are vital for addressing the diverse needs of residents with cancer.

Keywords: cancer; care homes; holistic care; holistic needs; integrative literature review; nursing homes; older people.

Conflict of interest statement

Author Yanting Cao was employed by the company Stellar Care NW Ltd. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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. 2023 Dec 9:spcare-2023-004435.
doi: 10.1136/spcare-2023-004435. Online ahead of print.

Palliative care for infants with life-limiting conditions: integrative review

Affiliations

Palliative care for infants with life-limiting conditions: integrative review

Rebecca Iten et al. BMJ Support Palliat Care. .

Abstract

Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation.

Objective: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions.

Methods: An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results.

Results: 37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions.

Conclusion: There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.

Keywords: Chronic conditions; Communication; Education and training; End of life care; Paediatrics; Supportive care.

Conflict of interest statement

Competing interests: None declared.

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Review

Advance Care Planning Engagement Strategies for Primary Care Providers Seeing Diverse Patient Populations: A Scoping Review

Haley Kirkpatrick et al. J Hosp Palliat Nurs. .

Abstract

Diverse patients are less likely than Whites to have advance care planning. The primary purpose of this scoping review was to summarize recent evidence about advance care planning engagement interventions for primary care providers working with diverse patients. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses-extension for Scoping Reviews (PRISMA-ScR) Checklist was followed. Peer-reviewed articles published in English since 2000 reporting the results of studies testing intervention programs in primary care to improve advance care planning with adult, racially diverse populations were included. Searches were conducted in 5 online databases and yielded 72 articles. Gray literature yielded 23 articles. Two authors independently reviewed the abstracts of 72 articles determining that 9 articles met the aim of this review. These studies were analyzed by communication tools and other resources, population, intervention, primary outcomes, instruments, and primary findings and organized into 3 categories: ( a ) provider-focused interventions, ( b ) patient-focused interventions, and ( c ) multilevel interventions. Improvement in advance care planning outcomes can be achieved for racially diverse populations by implementing targeted advance care planning engagement interventions for both providers and patients. These interventions can be used in primary care to increase advance care planning for diverse patients. More research is needed that evaluates best practices for integrating advance care planning into primary care workflows.

Conflict of interest statement

The authors have no conflicts of interest to disclose.

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Review
. 2024 Jan;38(1):57-68.
doi: 10.1177/02692163231214408. Epub 2023 Dec 6.

A systematic practice review: Providing palliative care for people with Parkinson's disease and their caregivers

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Review

A systematic practice review: Providing palliative care for people with Parkinson's disease and their caregivers

Michela Garon et al. Palliat Med. 2024 Jan.

Abstract

Background: People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered.

Aim: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers.

Design: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care.

Data sources: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care.

Results: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early.

Conclusions: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.

Keywords: Parkinson’s disease; caregivers; clinical guideline; palliative care; quality of life.

Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: C.W. has received honoraria for lectures for AbbVie. P.O. has received honoraria for lectures and advice from AbbVie, Bial, Britannia, Nordic Infucare, Stada and Zambon. A.A. has received compensation for consultancy and speaker-related activities from UCB, Boehringer Ingelheim, Ever Pharma, General Electric, Britannia, AbbVie, Kyowa Kirin, Zambon, Bial, Theravance Biopharma, Jazz Pharmaceuticals, Roche and Medscape; has received research support from Bial, Lundbeck, Roche, Angelini Pharmaceuticals, Horizon 2020 Grants 825785 and 101016902, Ministry of Education University and Research Grant ARS01_01081, Cariparo Foundation and Movement Disorders Society for NMS Scale validation; and has served as consultant for Boehringer–Ingelheim for legal cases on pathological gambling. S.L. has received honoraria for lectures from AbbVie, BIal and STADA as well as CAnnaXan. D.P. has received honoraria as a speaker at symposia sponsored by Boston Scientific Corp, Medtronic, AbbVie Inc, Zambon and Esteve Pharmaceuticals GmbH. He received payments as a consultant for Boston Scientific Corp and Bayer, and he received a scientific grant from Boston Scientific Corp for a project entitled: ‘Sensor-based optimisation of Deep Brain Stimulation settings in Parkinson's disease’ (COMPARE-DBS). Finally, D.P. was reimbursed by Esteve Pharmaceuticals GmbH and Boston Scientific Corp for travel expenses to attend congresses.

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. 2023 Nov 22:9:23337214231213172.
doi: 10.1177/23337214231213172. eCollection 2023 Jan-Dec.

Palliative and End-of-Life Care Access for Immigrants Living in High-income Countries: A Scoping Review

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Palliative and End-of-Life Care Access for Immigrants Living in High-income Countries: A Scoping Review

Gertrude Gondwe Phiri et al. Gerontol Geriatr Med. .

Abstract

This scoping review aimed to explore what is known about palliative and End-of-Life (EOL) care access by immigrants with culturally and linguistically diverse (CALD) background living in high-income Organization for Economic Co-operation and Development (OECD) countries. CaLD immigrants have low utilization of palliative care services with patients' family members taking up the role of caring, leading to immigrants not fully benefiting from the specialized services that are offered to alleviate suffering and promote quality of life. While there is some research in this area mainly in Europe, it cannot be said about all high-income OECD countries. Achieving person-centered care in high-income countries, requires identifying and addressing barriers to care access, especially by immigrants with CaLD background. Five-stage methodological framework by Arksey and O'Malley was used to undertake the review. Immigrants in OECD countries experience challenges in accessing palliative and EOL care services. The review also identified limited literature on the subject and establishes need for more research on the subject.

Keywords: advance care planning; decision-making; end-of-life; palliative care.

Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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. 2023 Dec;24(12):1820-1830.
doi: 10.1016/j.jamda.2023.09.024. Epub 2023 Oct 31.

Timing of Goals of Care Discussions in Nursing Homes: A Systematic Review

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Review

Timing of Goals of Care Discussions in Nursing Homes: A Systematic Review

Jung A Kang et al. J Am Med Dir Assoc. 2023 Dec.

Abstract

Objectives: Discussions between health professionals and nursing home (NH) residents or their families about the current or future goals of health care may be associated with better outcomes at the end of life (EOL), such as avoidance of unwanted interventions or death in hospital. The timing of these discussions varies, and it is possible that their influence on EOL outcomes depends on their timing. This study synthesized current evidence concerning the timing of goals of care (GOC) discussions in NHs and its impact on EOL outcomes.

Design: Systematic review.

Setting and participants: Adult populations in NH settings.

Methods: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. We searched PubMed, Embase, and Cumulative Index of Nursing and Allied Health from January 2000 to September 2022. We included studies that examined timing of GOC discussions in NHs, were peer-reviewed, and published in English. Quality of the studies was assessed using the Newcastle-Ottawa Scale.

Results: Screening of 1930 abstracts yielded 149 papers that were evaluated for eligibility. Of the 18 articles, representing 16 distinct studies that met review criteria, 12 evaluated the timing of advance directives. There was variation in the timing of GOC discussions and compared with discussions that occurred within a month of death, earlier discussions (eg, at the time of facility admission) were associated with lower rates of hospitalization at the EOL and lower health care costs.

Conclusions and implications: The timing of GOC discussions in NHs varies and evidence suggests that late discussions are associated with poorer EOL outcomes. The benefits of goal-concordant care may be enhanced by earlier and more frequent discussions. Future studies should examine the optimal timing for GOC discussions in the NH population.

Keywords: Nursing homes; advance care planning; advance directives; end-of-life care; goals of care; long-term care facilities; palliative care; serious illness discussion.

Conflict of interest statement

Disclosure The authors declare no conflicts of interest.

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Review
. 2023 Oct 18;11(20):2755.
doi: 10.3390/healthcare11202755.

Perceptions, Attitudes, and Knowledge toward Advance Directives: A Scoping Review

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Review

Perceptions, Attitudes, and Knowledge toward Advance Directives: A Scoping Review

João Carlos Macedo et al. Healthcare (Basel). .

Abstract

(1) Background: Advance directives are an expression of a person's autonomy regarding end-of-life care. Several studies have shown that the level of completion in countries where advance directives are legalised is low. To better understand this phenomenon, it is important to know the perceptions, attitudes, and knowledge that the population has about this instrument. The aim of this article was to explore a population's perceptions and/or attitudes and/or knowledge toward advance directives. (2) Methods: A search was conducted in March 2023 in the ISI Web of Knowledge, Scopus, and PubMed databases using the following keywords: "advance care directives", "advance care planning", "perceptions", "attitudes", and "knowledge". Two hundred and twenty-four (224) articles were identified, and thirteen (13) were included for analysis. (3) Results: The selected articles point to a low level of knowledge toward advance directives: they recognise a strong positive attitude of the population toward the implementation of advance directives but a low level of achievement. (4) Conclusions: Studies on perceptions/attitudes/knowledge toward advance directives are important to understand the real needs of the population regarding this issue and to implement more adequate and effective promotion and dissemination measures.

Keywords: advance care planning; advance directives; attitudes; knowledge; living will; perceptions.

Conflict of interest statement

The authors declare no conflict of interest.

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. 2023 Oct 19:spcare-2023-004430.
doi: 10.1136/spcare-2023-004430. Online ahead of print.

Dyadic advance care planning: systematic review of patient-caregiver interventions and effects

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Dyadic advance care planning: systematic review of patient-caregiver interventions and effects

Xiaohang Liu et al. BMJ Support Palliat Care. .

Abstract

Introduction: Family caregiver's involvement in advance care planning (ACP) is essential to provide high-quality end-of-life (EOL) care and to ease the surrogate decision-making burden. However, no systematic review has focused on existing ACP interventions involving patients and their families.

Aim: To systematically summarise current ACP interventions involving patients and their families.

Methods: Five English and two Chinese databases were searched from inception to September 2022. The eligible studies were experimental studies describing original data. The Joanna Briggs Institute critical appraisal tools assessed the methodological quality. Narrative synthesis was conducted for data analysis.

Results: In total, twenty-eight articles were included. Fifteen studies were randomised controlled trials, and the rest 13 studies were quasi-experimental studies. The data synthesis identified: (1) Key intervention components: strategies to promote ACP, ACP discussion and follow-up, as well as the role of family caregivers; (2) Effects on intended outcomes: interventions have shown benefit on completion of ACP actions, while inconsistent findings were found on the process outcomes and quality of EOL care. In addition, a logic model for patient-caregiver dyadic ACP was created, and the underlying mechanisms of action included well-preparation, open discussion and adequate support for plan/action.

Conclusions: This review provides comprehensive evidence about patient-caregiver dyadic ACP, a promising intervention to better prepare for EOL communication and decision-making. A logic model has been mapped to give a preliminary indication for future implementation. More empirical studies are needed to improve this model and culturally adapt it in a real-world setting.

Keywords: Communication; End of life care.

Conflict of interest statement

Competing interests: None declared.

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. 2023 Dec;24(12):1831-1842.
doi: 10.1016/j.jamda.2023.09.008. Epub 2023 Oct 14.

A Systematic Review of Non-Seriously Ill Community-Dwelling Asians' Views on Advance Care Planning

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Review

A Systematic Review of Non-Seriously Ill Community-Dwelling Asians' Views on Advance Care Planning

Mun Kit Lim et al. J Am Med Dir Assoc. 2023 Dec.

Abstract

Objectives: To systematically synthesize the views of community-dwelling Asians on Advance care planning and to summarize the factors and reasons affecting their uptake of ACP.

Design: Mixed-methods systematic review (PROSPERO: CRD42018091033).

Setting and participants: Asian adults (≥18 years old) living in the community globally.

Methods: Medline (Ovid), Web of Science, CINAHL (EBSCO), Open Grey, and Google Scholar were searched from inception to June 30, 2022. Qualitative, quantitative, or mixed-methods studies reporting on the views of non-seriously ill community-dwelling Asian adults on ACP or the factors influencing their ACP uptake were included. Secondary research, studies not published in English, or studies not available as full text were excluded. Two independent teams of researchers extracted data, assessed methodologic quality, and performed the data analysis. Data analysis was conducted using the multistep convergent integrated approach based on Joanna Briggs Institute methodology for mixed-methods systematic review.

Results: Fifty-eight studies were included. Non-seriously ill community-dwelling Asians were willing to engage in ACP (46.5%-84.4%) although their awareness (3.1%-42.9%) and uptake of ACP remained low (14.0%-53.4%). Background factors (sociodemographic factors, and health status, as well as experience and exposure to information) and underlying beliefs (attitude toward ACP, subjective norm, and perceived behavioral control) were found to affect their uptake of ACP. A conceptual framework was developed to facilitate a proper approach to ACP for this population.

Conclusions and implications: A flexible approach toward ACP is needed for non-seriously ill community-dwelling Asians. There is also a need to raise end-of-life and ACP literacy, and to explore ways to narrow the gap in the expectations and implementation of ACP so that trust in its effective execution can be built.

Keywords: Advance care planning; Asian people; advance directives; attitude; community-dwelling adult; systematic review.

Conflict of interest statement

Disclosure The author declares no relevant conflicts of interest or financial relationships.

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. 2023 Oct 6;22(1):363.
doi: 10.1186/s12912-023-01523-2.

Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review

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Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review

Fran B A L Peerboom et al. BMC Nurs. .

Abstract

Background: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.

Objective: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver.

Design: Scoping review.

Methods: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review.

Results: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills.

Conclusions: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

Keywords: Advance care planning; End-of-life communication; Home care; Hospital; Nursing home; Nursing staff; Older people; Scoping review.

Conflict of interest statement

The authors declare no competing interests.

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. 2023 Sep 15:3:1242413.
doi: 10.3389/frhs.2023.1242413. eCollection 2023.

Advanced care planning in the early phase of COVID-19: a rapid review of the practice and policy lessons learned

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Review

Advanced care planning in the early phase of COVID-19: a rapid review of the practice and policy lessons learned

Sarah Younan et al. Front Health Serv. .

Abstract

Background: The importance of advance care planning (ACP) has been highlighted by the advent of life-threatening COVID-19. Anecdotal evidence suggests changes in implementation of policies and procedures is needed to support uptake of ACPs. We investigated the barriers and enablers of ACP in the COVID-19 context and identify recommendations to facilitate ACP, to inform future policy and practice.

Methods: We adopted the WHO recommendation of using rapid reviews for the production of actionable evidence for this study. We searched PUBMED from January 2020 to April 2021. All study designs including commentaries were included that focused on ACPs during COVID-19. Preprints/unpublished papers and Non-English language articles were excluded. Titles and abstracts were screened, full-texts were reviewed, and discrepancies resolved by discussion until consensus.

Results: From amongst 343 papers screened, 123 underwent full-text review. In total, 74 papers were included, comprising commentaries (39) and primary research studies covering cohorts, reviews, case studies, and cross-sectional designs (35). The various study types and settings such as hospitals, outpatient services, aged care and community indicated widespread interest in accelerating ACP documentation to facilitate management decisions and care which is unwanted/not aligned with goals. Enablers of ACP included targeted public awareness, availability of telehealth, easy access to online tools and adopting person-centered approach, respectful of patient autonomy and values. The emerging barriers were uncertainty regarding clinical outcomes, cultural and communication difficulties, barriers associated with legal and ethical considerations, infection control restrictions, lack of time, and limited resources and support systems.

Conclusion: The pandemic has provided opportunities for rapid implementation of ACP in creative ways to circumvent social distancing restrictions and high demand for health services. This review suggests the pandemic has provided some impetus to drive adaptable ACP conversations at individual, local, and international levels, affording an opportunity for longer term improvements in ACP practice and patient care. The enablers of ACP and the accelerated adoption evident here will hopefully continue to be part of everyday practice, with or without the pandemic.

Keywords: COVID-19; advance care planning; barriers; enablers; policy; rapid review.

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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. 2023 Sep;11(3):262-273.
doi: 10.1037/cpp0000486.

Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review

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Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review

Amy R Newman et al. Clin Pract Pediatr Psychol. 2023 Sep.

Abstract

Objective: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness.

Methods: Scoping review methodology as outlined by Arksey and O'Malley.

Results: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review. Interventions focused on supporting advance care planning (ACP), facilitating treatment decision making, managing pain, and promoting resilience, psychosocial well-being, and quality of life. Interventions were delivered face-to-face and via different eHealth platforms and were targeted to AYAs with cancer, HIV/AIDS, and cystic fibrosis in both inpatient and outpatient settings.

Conclusions: Few evidence-based multidisciplinary palliative care interventions have documented benefit for AYAs with serious illness. The limited work that has been done demonstrates that AYAs are open to engaging in palliative care interventions and suggests that individual members of the multidisciplinary team can implement these different interventions to support enhanced patient outcomes.

Keywords: adolescents; life-limiting illness; palliative care; serious illness; young adults.

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. 2023 Nov-Dec:219:107411.
doi: 10.1016/j.rmed.2023.107411. Epub 2023 Sep 17.

Palliative care interventions in chronic respiratory diseases: A systematic review

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Free article
Review

Palliative care interventions in chronic respiratory diseases: A systematic review

Marta Fé Santos et al. Respir Med. 2023 Nov-Dec.
Free article

Abstract

Introduction: Chronic respiratory diseases represent a significant burden of disease globally, with high morbidity and mortality. Individuals living with these conditions, as well as their families, face considerable physical, emotional and social challenges. Palliative care might be a valuable approach to address their complex needs, but evidence to prove this is still scarce.

Objectives: This systematic review aimed to study the effectiveness of palliative care interventions in health-related outcomes (quality of life, symptom control, symptom burden, psychological well-being, advance care planning, use of health services, and survival) in chronic respiratory patients.

Methods: Pubmed, Cochrane and Web of Science were searched for trials published in the last 10 years, comparing palliative care interventions to usual care, in patients with chronic respiratory diseases. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed.

Results: Eight studies were included, seven randomized controlled trials and one cluster-controlled trial; the former with moderate risk of bias and the latter with high risk of bias. Findings revealed that palliative interventions improve breathlessness control and advance care planning. There were no significant differences for the other outcomes.

Conclusions: Palliative care appears to have a beneficial effect on breathlessness, one of the most distressing symptoms in patients suffering from chronic respiratory diseases and allows for advanced care planning. Additional research, with more robust trials, is needed to draw further conclusions about other health-related outcomes.

Keywords: Advance care planning; Breathlessness; Health care; Outcome assessment; Palliative care; Respiratory diseases; Systematic review.

Conflict of interest statement

Declaration of competing interest There is no conflict of interest.

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. 2023 Sep 14:spcare-2023-004424.
doi: 10.1136/spcare-2023-004424. Online ahead of print.

Motivational interviews to enhance advance care plans in older adults: systematic review

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Motivational interviews to enhance advance care plans in older adults: systematic review

Tongyao Wang et al. BMJ Support Palliat Care. .
No abstract available

Keywords: Advance Care Planning; Advance Directives; Communication; Education and training; End of life care.

Conflict of interest statement

Competing interests: None declared.

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Review
. 2023 Nov:116:107942.
doi: 10.1016/j.pec.2023.107942. Epub 2023 Aug 15.

Exploring clinical management of cognitive and behavioural deficits in MND. A scoping review

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Free article
Review

Exploring clinical management of cognitive and behavioural deficits in MND. A scoping review

Rebecca Francis et al. Patient Educ Couns. 2023 Nov.
Free article

Abstract

Objectives: Little is known about how cognitive and behavioural decline in MND is managed clinically. This review aimed to summarise clinical management approaches of cognitive and behavioural decline in MND reported in peer-reviewed and grey literature.

Methods: A scoping review was conducted across Embase, Medline, Psychinfo and Emcare in October 2022. Grey literature was also searched across Google Scholar and Google in October 2022.

Results: A total of N = 26 studies and 8 documents were included. Thematic analysis revealed six key areas of clinical management: i. Assessment, ii. Education, iii. Advance Care Planning, iv. Adaptation of Care Plan, v. Communication and vi. Carer Support.

Conclusions: The literature on management of cognitive and behavioural decline in MND is sparse. Most peer-reviewed literature consists of expert commentary and there is a lack of primary data to guide practitioners and families on how to manage cognitive and behavioural change in MND.

Practice implications: Determining as early as practicable the presence of cognitive and behavioural changes in pwMND will enable practitioners to make adaptations to communication, provide education and supported decision-making for forward planning. This will enable individualised care, planned in partnership with families with MND, which incorporates personal needs and wishes.

Keywords: Behaviour; Clinical Management; Cognition; Motor Neuron Disease.

Conflict of interest statement

Declaration of Competing Interest There are NIL competing interests.

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. 2023 Aug 14;24(1):64.
doi: 10.1186/s12910-023-00944-7.

Shared decision making and advance care planning: a systematic literature review and novel decision-making model

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Shared decision making and advance care planning: a systematic literature review and novel decision-making model

Ana Rosca et al. BMC Med Ethics. .

Abstract

Background and aims: Shared decision making (SDM) and advance care planning (ACP) are important evidence and ethics based concepts that can be translated in communication tools to aid the treatment decision-making process. Although both have been recommended in the care of patients with risks of complications, they have not yet been described as two components of one single process. In this paper we aim to (1) assess how SDM and ACP is being applied, choosing patients with aortic stenosis with high and moderate treatment complication risks such as bleeding or stroke as an example, and (2) propose a model to best combine the two concepts and integrate them in the care process.

Methods: In order to assess how SDM and ACP is applied in usual care, we have performed a systematic literature review. The included studies have been analysed by means of thematic analysis as well as abductive reasoning to determine which SDM and ACP steps are applied as well as to propose a model of combining the two concepts into one process.

Results: The search in Medline, Cinahl, Embase, Scopus, Web of science, Psychinfo and Cochrane revealed 15 studies. Eleven describe various steps of SDM while four studies discuss the documentation of goals of care. Based on the review results and existing evidence we propose a model that combines SDM and ACP in one process for a complete patient informed choice.

Conclusion: To be able to make informed choices about immediate and future care, patients should be engaged in both SDM and ACP decision-making processes. This allows for an iterative process in which each important decision-maker can share their expertise and concerns regarding the care planning and advance care planning. This would help to better structure and prioritize information while creating a trustful and respectful relationship between the participants. PROSPERO 2019. CRD42019124575.

Keywords: Advance care planning; Aortic stenosis; Integrative model; Shared decision making; Systematic literature review.

Conflict of interest statement

The authors declare that they have no competing interests.

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Review
. 2023 Jul 7;10(7):1179.
doi: 10.3390/children10071179.

Pediatric Advance Care Planning: A Scoping Review

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Review

Pediatric Advance Care Planning: A Scoping Review

Nadine Lusney et al. Children (Basel). .

Abstract

To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for children/youth. The scoping review protocol was developed in accordance with the Joanna Briggs Institute methodology for scoping reviews, and was prospectively registered on the Open Science Framework. MEDLINE, Embase, CINAHL, the Web of Science Core Collection, and Google Scholar, as well as sources of unpublished studies and grey literature, were reviewed. Sixty-four articles met the criteria. Fifteen pACP documentation forms/tools were also identified. Overall, the included articles highlighted that pACP should be a structured, collaborative and iterative process between the family and a trusted or relevant healthcare provider, encompassing medical and non-medical issues. Few articles provided insights into specific elements recommended for advance directive forms. Identified strategies for implementation included a structured, step-by-step pACP interventional tool along with ongoing training, mentorship, and defined organizational structures for the clinician. No single specific ACP tool was acknowledged as the gold standard. Use of a pACP tool, along with ongoing provider education and communication skill development, standardized/accessible documentation, and system-wide quality improvement support, were noted as integral components of pACP.

Keywords: pediatric advance care planning; pediatric palliative care; scoping review.

Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

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Review
. 2023 Jul 28;22(1):107.
doi: 10.1186/s12904-023-01230-4.

Public perceptions of advance care planning (ACP) from an international perspective: a scoping review

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Review

Public perceptions of advance care planning (ACP) from an international perspective: a scoping review

Anne Canny et al. BMC Palliat Care. .

Abstract

Background: Advance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations.

Objectives: To explore public perceptions of ACP to inform increased public engagement and empowerment.

Methods: Joanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus.

Results: Of 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences.

Conclusions: Studies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts.

Keywords: Advance care planning; Anticipatory care planning; Palliative care; Primary palliative care; Public opinion.

Conflict of interest statement

All authors declare that they have no other competing interests.

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. 2023 Jun;11(7):1-135.
doi: 10.3310/JVFW4781.

Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds

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Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds

Zoebia Islam et al. Health Soc Care Deliv Res. 2023 Jun.

Abstract

Background: This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning.

Objective: The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning?

Design: This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings.

Setting: The study was set in Nottinghamshire and Leicestershire in the UK.

Results: Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified.

Limitations: It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included.

Conclusions: What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this.

Future work: Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding?

Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.

Keywords: ADVANCE CARE PLANNING; END OF LIFE; ETHNIC DIVERSITY; FAMILY CAREGIVER EXPERIENCES; PATIENT EXPERIENCES; QUALITATIVE RESEARCH.

Plain language summary

This study explored the experiences of terminally ill patients and their families from different ethnic backgrounds and whether or not, and how, they think ahead about their health getting worse and about dying. It included 93 interviews from 18 patient case studies, 19 interviews with bereaved family caregivers and workshops with 50 public and professional stakeholders. Most patients and their family caregivers lived with hope, considering the future only in terms of practical matters of wills and funerals, rather than thinking about becoming less well and dying, which, for some, was counter to their beliefs. Family duty and community expectations stopped some participants from seeking additional support. However, when the family did not know how gravely ill the patient was, the patient’s unexpected decline and death could be a devastating experience, with regret that they had been denied the chance to prepare and to make the best use of the time. Health-care professionals appear to feature little in people’s lives. Some participants indicated a lack of trust and a poor experience of health care, but others talked of good experiences. People want care that is personal to them and compassionate. This is no different from people from white British backgrounds and supports the use of different physical, social, spiritual and psychological care frameworks used in palliative care to address the individual needs of patients and families. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people’s lives that may be unfamiliar. Personalising care requires health-care professionals to get to ‘know’ the person and develop confidence and skills to support patients and their families. Training, using stories based on our interviews, was seen as an effective way to support this. Effective communication and information-sharing between trusted individuals was seen by stakeholders as important in providing better care.

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Review
. 2023 Nov;71(11):3595-3608.
doi: 10.1111/jgs.18495. Epub 2023 Jul 13.

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

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Review

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

Jennifer L Gabbard et al. J Am Geriatr Soc. 2023 Nov.

Abstract

Background: Advance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics.

Methods: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care).

Results: We included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease.

Conclusions: In RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.

Keywords: advance care planning; clinical trials; dementia; outcomes; pragmatic.

Conflict of interest statement

Conflict of Interest

All authors report no personal or financial conflicts of interest.

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Review
. 2024 Jan-Mar;20(1):83-114.
doi: 10.1080/15524256.2023.2229041. Epub 2023 Jun 29.

Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review

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Review

Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review

Raúl Hormazábal-Salgado et al. J Soc Work End Life Palliat Care. 2024 Jan-Mar.

Abstract

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.

Keywords: Advance care planning; advance directives; decision-making; dementia; personal autonomy.

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. 2023 Jun 28:spcare-2023-004162.
doi: 10.1136/spcare-2023-004162. Online ahead of print.

Advance care plans for vulnerable and disadvantaged adults: systematic review and narrative synthesis

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Advance care plans for vulnerable and disadvantaged adults: systematic review and narrative synthesis

Samantha Jane Brean et al. BMJ Support Palliat Care. .

Abstract

Background: Evidence suggests that there is a gap in advance care planning (ACP) completion between vulnerable and disadvantaged populations compared with the general population. This review seeks to identify tools, guidelines or frameworks that have been used to support ACP interventions with vulnerable and disadvantaged adult populations as well as their experiences and outcomes with them. The findings will inform practice in ACP programmes.

Methods: A systematic search of six databases from 1 January 2010 to 30 March 2022 was conducted to identify original peer-reviewed research that used ACP interventions via tools, guidelines or frameworks with vulnerable and disadvantaged adult populations and reported qualitative findings. A narrative synthesis was conducted.

Results: Eighteen studies met the inclusion criteria. Relatives, caregivers or substitute decision-makers were included in eight studies.

Settings: hospital outpatient clinics (N=7), community settings (N=7), nursing homes (N=2), prison (N=1) and hospital (N=1). A variety of ACP tools, guidelines or frameworks were identified; however, the facilitator's skills and approach in delivering the intervention appeared to be as important as the intervention itself. Participants indicated mixed experiences, some positive, some negative and four themes emerged: uncertainty, trust, culture and decision-making behaviour. The most common descriptors relating to these themes were prognosis uncertainty, poor end-of-life communication and the importance of building trust.

Conclusion: The findings indicate that ACP communication could be improved. ACP conversations should incorporate a holistic and personalised approach to optimise efficacy. Facilitators should be equipped with the necessary skills, tools and information needed to assist ACP decision-making.

Keywords: Communication; Quality of life.

Conflict of interest statement

Competing interests: None declared.

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Review
. 2023 Sep;37(7):690-714.
doi: 10.1111/bioe.13197. Epub 2023 Jun 27.

Steering clear of Akrasia: An integrative review of self-binding Ulysses Contracts in clinical practice

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Review

Steering clear of Akrasia: An integrative review of self-binding Ulysses Contracts in clinical practice

Connor T A Brenna et al. Bioethics. 2023 Sep.

Abstract

In many jurisdictions, legal frameworks afford patients the opportunity to make prospective medical decisions or to create directives that contain a special provision forfeiting their own ability to object to those decisions at a future time point, should they lose decision-making capacity. These agreements have been described with widely varying nomenclatures, including Ulysses Contracts, Odysseus Transfers, Psychiatric Advance Directives with Ulysses Clauses, and Powers of Attorney with Special Provisions. As a consequence of this terminological heterogeneity, it is challenging for healthcare providers to understand the terms and uses of these agreements and for ethicists to engage with the nuances of clinical decision-making with such unique provisions surrounding patient autonomy. In theory, prospective self-binding agreements may safeguard patient's "authentic" wishes from future "inauthentic" changes of mind. In practice, it is unclear what may be comprised within these agreements or how-and to what effect-they are used. The primary focus of this integrative review is to curate the existing literature describing Ulysses Contracts (and analogous decisions) used in the clinical arena, in order to empirically synthesize their shared essence and provide insights into the traditional components of these agreements when used in practice, the requirements of their consent processes, and the outcomes of their utilization.

Keywords: Odysseus Transfer; Ulysses Contract; Ulysses Pact; binding contract; psychiatric will; voluntary commitment contract.

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Review
. 2023 Sep;37(8):1063-1078.
doi: 10.1177/02692163231179255. Epub 2023 Jun 13.

The role of acculturation in the process of advance care planning among Chinese immigrants: A narrative systematic review

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Review

The role of acculturation in the process of advance care planning among Chinese immigrants: A narrative systematic review

Tingting Zhu et al. Palliat Med. 2023 Sep.

Abstract

Background: Acculturation is the process of two different cultures coming into contact. It is unclear how acculturation influences Chinese immigrants' engagement in advance care planning due to the complexity and multifaceted nature of both acculturation and advance care planning.

Aims: To synthesize evidence regarding the role of Chinese immigrants' acculturation in their engagement in advance care planning.

Design: Systematic mixed-method review, registered in PROSPERO (CRD42021231822).

Data sources: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for publications until January 21, 2021.

Results: Twenty-one out of 1112 identified articles were included in the analysis. Of those 21 articles, 17 had a qualitative design and 13 originated from the United States. Three of four quantitative studies reported that higher acculturation levels were associated with better knowledge or higher rate of engagement in advance care planning. Analysis of qualitative studies showed that Chinese immigrants' engagement in advance care planning was associated with their: (1) self-perceived cultural identity (native or non-native); (2) interpretation of filial piety (traditional or modern); and (3) interpretation of autonomy (individual or familial). To facilitate their engagement, Chinese immigrants prefer an implicit approach, non-family-related initiators, contextualization advance care planning in Chinese culture and using Chinese language.

Conclusion: Chinese immigrants' willingness to engage in advance care planning varied with their acculturation level. To engage them in advance care planning, we recommend adapting the introduction of advance care planning to address people's perceptions of their cultural identity, filial piety, and autonomy, as well as their preference for certain approach, initiator, context, and language.

Keywords: Asian continental ancestry group; acculturation; advance care planning; emigration and immigration; systematic review.

Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Meta-Analysis
. 2023 May;12(3):571-583.
doi: 10.21037/apm-23-367.

Effects of advance care planning on end-of-life decisions among community-dwelling elderly people and their relatives: a systematic review and meta-analysis

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Free article
Meta-Analysis

Effects of advance care planning on end-of-life decisions among community-dwelling elderly people and their relatives: a systematic review and meta-analysis

Jingxi Wang et al. Ann Palliat Med. 2023 May.
Free article

Abstract

Background: Currently, more and more older people are inevitably facing the final stages of life and their need for end-of-life care is becoming more prominent. It is therefore important to understand in advance what older people expect from their approaching end-of-life care and attention. We conducted a meta-analysis to explore the influence of advance care planning (ACP) on end-of-life decision-making among older adults living in community settings and their family members.

Methods: We searched databases including PubMed, Embase, Cochrane Library, and Web of Science through 10 August 2022, to locate randomized controlled trials (RCTs) that investigated the effects of ACP on the end-of-life decision-making of community-dwelling elderly individuals and their family members. Studies we obtained from the databases were screened based on specific inclusion and exclusion criteria. The software Stata 15.0 was used for combining and analyzing data.

Results: A total of 8 RCTs were eligible for meta-analysis. They involved 1,292 community-dwelling elderly people. The meta-analysis results revealed the incidence of the following items among participants after the intervention of the ACP: cardiopulmonary resuscitation (CPR) [rate =26%, 95% confidence interval (CI): 11-41%], life-sustaining treatment (rate =12%, 95% CI: 6-18%), gastric gavage (rate =34%, 95% CI: 18-50%), mechanical ventilation (rate =34%, 95% CI: 14-54%), death at home (rate =7%, 95% CI: 3-12%), and death in hospital (rate =6%, 95% CI: 3-10%). The systematic review protocol was prespecified and registered in the international prospective register of systematic reviews (PROSPERO; CRD42022348900).

Conclusions: According to current research, ACP is a promising treatment that can improve the end of life of elderly people living in the community and their families. However, considering the heterogeneity of the included studies, multi-center RCTs with high quality and larger sample sizes need to be conducted to confirm our conclusions.

Keywords: Advance care planning (ACP); decision-making; elderly; systematic review.

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Review
. 2023 Dec;26(12):1728-1743.
doi: 10.1089/jpm.2022.0520. Epub 2023 Jun 1.

Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands

Affiliations
Review

Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands

Veronica Neefjes. J Palliat Med. 2023 Dec.

Abstract

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. Objective: To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. Methods: Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. Results: Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. Conclusion: The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.

Keywords: advance care planning; child; ethics; life-limiting disease; medical treatment; parental decision making.

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Meta-Analysis
. 2023 May 29;13(5):e068130.
doi: 10.1136/bmjopen-2022-068130.

Advance care planning for frail elderly: are we missing a golden opportunity? A mixed-method systematic review and meta-analysis

Affiliations
Meta-Analysis

Advance care planning for frail elderly: are we missing a golden opportunity? A mixed-method systematic review and meta-analysis

Xinying Wang et al. BMJ Open. .

Abstract

Objective: The aim is to integrate quantitative and qualitative evidence to understand the effectiveness and experience of advance care planning (ACP) for frail elderly.

Design: A mixed-methods systematic review and meta-analysis was conducted. Quality evaluation was conducted using critical appraisal tools from the Joanna Briggs Institute. Data were synthesised and pooled for meta-analysis or meta-aggregation as needed.

Data sources: An electronic search of MEDLINE, CINAHL, Embase, PubMed, PsycINFO, and Cochrane Library databases from January 2003 to April 2022.

Eligibility criteria for selecting studies: We included experimental and mixed-methods studies. The quantitative component attempts to incorporate a broader study design. The qualitative component aids in comprehending the participant's experience with ACP and its efficacy.

Data extraction and synthesis: Two independent reviewers undertook screening, data extraction and quality assessment. The quantitative and qualitative data were synthesised and integrated using a convergent segregated approach.

Results: There were 12 158 articles found, and 17 matched the inclusion criteria. The quality of the quantitative component of most included studies (6/10) was rated as low, and the qualitative component of half included studies (4/8) was rated as moderate. The meta-analysis showed that the intervention of ACP for frail elderly effectively increases readiness, knowledge and process of ACP behaviours. The meta-aggregation showed that the participants hold a positive attitude towards ACP and think it facilitates expressing their preferences for the medical decision.

Conclusion: ACP is an effective and feasible strategy to facilitate frail elderly to express their healthcare wishes timely and improve their outcomes. This study could provide proof for a better understanding of the subject and help direct future clinical practice. More well-designed randomised controlled trials evaluating the most effective ACP interventions and tools are needed for the frail elderly population.

Prospero registration number: CRD42022329615.

Keywords: palliative care; statistics & research methods; systematic review.

Conflict of interest statement

Competing interests: None declared.

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Review
. 2023 Jul-Aug:52:63-72.
doi: 10.1016/j.gerinurse.2023.05.006. Epub 2023 May 27.

Community-based early dementia advance care planning in the United States: A scoping review

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Review

Community-based early dementia advance care planning in the United States: A scoping review

Christine Noelle Flaherty et al. Geriatr Nurs. 2023 Jul-Aug.
No abstract available

Keywords: Advance care planning; Community; Early dementia; Social determinants of health.

Conflict of interest statement

Declaration of Competing Interest None.

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Review
. 2023 May 10;20(10):5780.
doi: 10.3390/ijerph20105780.

Opinions of Older Individuals on Advance Care Planning and Factors Affecting Their Views: A Systematic Review

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Review

Opinions of Older Individuals on Advance Care Planning and Factors Affecting Their Views: A Systematic Review

Nilufer Korkmaz Yaylagul et al. Int J Environ Res Public Health. .

Abstract

The objective of this systematic review is to present older individuals' views on the advance care planning (ACP) process and the factors affecting those opinions. The review contains search terms predetermined in the databases of CINAHL, MEDLINE (via PubMed), Academic Search Ultimate, Web of Science, Master FILE, and TR Dizin over the last 10 years (1 January 2012-31 December 2021) in English and Turkish. The studies were included in the research using inclusion (sample age ≥ 50, focusing on individuals' opinions on ACP) and exclusion (articles whose samples consisted of individuals with a specific disease, non-research articles) criteria. Quality assessment was conducted using the Mixed Methods Appraisal Tool. A narrative synthesis was used to collate findings. The most striking results are the positive perspectives increasing in parallel with the individuals' level of knowledge and experience about ACP. Variables affecting their views are advanced age, marital status, socioeconomic status, perception of remaining life expectancy, self-perceived health, number and stage of chronic diseases, religion, and cultural characteristics. This study offers guidance on the application and dissemination of ACP, empowering the use of this practice given the perspectives of older adults on ACP and the factors that affect them that the data show.

Keywords: education and training; end-of-life care; public health; supportive care; terminal care.

Conflict of interest statement

The authors declare no conflict of interest.

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Review
. 2023 Jul 1;35(4):261-275.
doi: 10.1097/CCO.0000000000000951. Epub 2023 May 15.

Advance care planning in oncology: a scoping review and some recommendations

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Review

Advance care planning in oncology: a scoping review and some recommendations

Yves Libert et al. Curr Opin Oncol. .

Abstract

Purpose of review: Cancer patients' communication with their relatives and healthcare professionals (HCPs) is essential for advance care planning (ACP). The purpose of this scoping review was to synthesize recent research findings about factors enabling cancer patients', their relatives', and physicians' communication about ACP, and to propose recommendations for future ACP implementation in cancer care.

Recent findings: This review confirmed the importance of aspects of the cancer care context (i.e., culture) as ACP uptake-predisposing and -enabling factors. It highlighted the difficulty of determining who should initiate ACP discussion, with which patients and at what time-points. It also highlighted a lack of consideration for socioemotional processes in the study of ACP uptake despite evidence that cancer patients', relatives' and physicians' discomforts that arise from communication about end-of-life and the wish to safeguard each other are main obstacles to ACP implementation.

Summary: Based on these recent findings, we propose an ACP communication model, developed with the consideration of factors reported to influence ACP uptake and communication in healthcare, and integrating socioemotional processes. The testing of the model may yield suggestions for innovative interventions that can support communication about ACP and promote a better uptake in clinical practice.

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Review
. 2023 Jun;13(2):161-173.
doi: 10.1136/bmjspcare-2022-003544. Epub 2022 Jun 3.

Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences

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Review

Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences

Helen Elizabeth Bennett et al. BMJ Support Palliat Care. 2023 Jun.

Abstract

Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process.

Aim: To understand parents' experience of advance care planning for a child or young person with a life-limiting condition.

Design: Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability.

Data sources: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms.

Results: 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment.

Conclusions: Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.

Keywords: end of life care; paediatrics; terminal care.

Conflict of interest statement

Competing interests: None declared.

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. 2023 Apr 28:13:1040589.
doi: 10.3389/fonc.2023.1040589. eCollection 2023.

Why is advance care planning underused in oncology settings? A systematic overview of reviews to identify the benefits, barriers, enablers, and interventions to improve uptake

Affiliations

Why is advance care planning underused in oncology settings? A systematic overview of reviews to identify the benefits, barriers, enablers, and interventions to improve uptake

Lisa Guccione et al. Front Oncol. .

Abstract

Background: Advance care planning (ACP) centres on supporting people to define and discuss their individual goals and preferences for future medical care, and to record and review these as appropriate. Despite recommendations from guidelines, rates of documentation for people with cancer are considerably low.

Aim: To systematically clarify and consolidate the evidence base of ACP in cancer care by exploring how it is defined; identifying benefits, and known barriers and enablers across patient, clinical and healthcare services levels; as well as interventions that improve advance care planning and are their effectiveness.

Methods: A systematic overview of reviews was conducted and was prospectively registered on PROSPERO. PubMed, Medline, PsycInfo, CINAHL, and EMBASE were searched for review related to ACP in cancer. Content analysis and narrative synthesis were used for data analysis. The Theoretical Domains Framework (TDF) was used to code barriers and enablers of ACP as well as the implied barriers targeted by each of the interventions.

Results: Eighteen reviews met the inclusion criteria. Definitions were inconsistent across reviews that defined ACP (n=16). Proposed benefits identified in 15/18 reviews were rarely empirically supported. Interventions reported in seven reviews tended to target the patient, even though more barriers were associated with healthcare providers (n=40 versus n=60, respectively).

Conclusion: To improve ACP uptake in oncology settings; the definition should include key categories that clarify the utility and benefits. Interventions need to target healthcare providers and empirically identified barriers to be most effective in improving uptake.

Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?, identifier CRD42021288825.

Keywords: advance care planning (ACP); barriers and enablers; healthcare provider (HCP); improving uptake; patient-centered care; theoretical domains framework.

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Review
. 2023 Oct;12(5):611-624.
doi: 10.1089/jayao.2023.0013. Epub 2023 May 5.

The Delivery of Palliative and End-of-Life Care to Adolescents and Young Adults Living with Cancer: A Scoping Review

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Review

The Delivery of Palliative and End-of-Life Care to Adolescents and Young Adults Living with Cancer: A Scoping Review

Emily K Drake et al. J Adolesc Young Adult Oncol. 2023 Oct.

Abstract

The primary purpose of this scoping review was to provide an overview of the existing evidence on the delivery of palliative and end-of-life care to adolescents and young adults (AYAs) living with cancer, by identifying knowledge gaps and discussing the key characteristics and types of evidence in this field. This study employed a JBI scoping review design. CINAHL (EBSCO), Embase (Elsevier), MEDLINE (Ovid), APA PsycINFO (EBSCO), and Web of Science (Science Citation Index Expanded and Social Sciences Citation Index; Clarivate Analytics) databases were searched along with grey literature sources to February 2022 for related studies on the delivery of palliative and end-of-life care to AYAs. No search restrictions were applied. Two independent reviewers screened titles, abstracts, and full-text articles for eligibility, and they extracted data from studies that met the inclusion criteria. A total of 29,394 records were identified through our search strategy and 51 studies met the inclusion criteria of the study. The studies were published between 2004 and 2022, with the majority from North America (65%). The included studies involved patient, healthcare provider, caregiver, and public stakeholders. Their primary foci were often on end-of-life outcomes (41%) and/or advance care planning/end-of-life priorities and decision-making (35%). This review identified several evidence gaps within the field, including a focus primarily on patients who have died. Findings highlight the need for more collaborative research with AYAs on their experiences with palliative and end-of-life care, as well as their involvement as patient partners in research.

Keywords: care delivery; end-of-life; palliative care; scoping review.

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. 2023 May 6;22(1):55.
doi: 10.1186/s12904-023-01176-7.

Experiences and perspectives of healthcare professionals implementing advance care planning for people suffering from life-limiting illness: a systematic review and meta-synthesis of qualitative studies

Affiliations

Experiences and perspectives of healthcare professionals implementing advance care planning for people suffering from life-limiting illness: a systematic review and meta-synthesis of qualitative studies

Nanxi Zhu et al. BMC Palliat Care. .

Abstract

Background: Life-limited patients may lose decision-making abilities during disease progression. Advance care planning can be used as a discussion method for healthcare professionals to understand patients' future care preferences. However, due to many difficulties, the participation rate of healthcare professionals in advance care planning is not high.

Aim: To explore the facilitators of and barriers to healthcare professionals' provision of advance care planning to life-limited patients to better implement it for this population.

Methods: We followed ENTREQ and PRISMA to guide this study. We conducted a systematic search of PubMed, Web of Science, Embase, CINAHL, PsycINFO, CNKI, and SinoMed to include qualitative data on the experiences and perspectives of healthcare professionals in different professional fields in providing advance care planning for life-limited patients. The Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research was used to assess the quality of the included studies.

Results: A total of 11 studies were included. Two themes were identified: unsupported conditions and facilitative actions. Healthcare professionals regarded cultural concepts, limited time, and fragmented record services as obstacles to implementation. They had low confidence and were overly concerned about negative effects. They needed to possess multiple abilities, learn to flexibly initiate topics, and facilitate effective communication based on multidisciplinary collaboration.

Conclusion: Healthcare professionals need an accepting cultural environment to implement advance care planning, a sound legal system, financial support, and a coordinated and shared system to support them. Healthcare systems need to develop educational training programs to increase the knowledge and skills of healthcare professionals and to promote multidisciplinary collaboration to facilitate effective communication. Future research should compare the differences in the needs of healthcare professionals in different cultures when implementing advance care planning to develop systematic implementation guidelines in different cultures.

Keywords: Advance care planning; Advance directives; Healthcare professional; Palliative care; Systematic review; meta-synthesis.

Conflict of interest statement

All the authors declare that they have no conflicts of interest.

The authors have no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

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Review
. 2023 May 3;22(1):54.
doi: 10.1186/s12904-023-01171-y.

Palliative care in advanced Huntington's disease: a scoping review

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Review

Palliative care in advanced Huntington's disease: a scoping review

Dorine J Boersema-Wijma et al. BMC Palliat Care. .

Erratum in

Abstract

Background: As Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.

Objective: To review the literature focusing on palliative care in advanced stage HD, and the level of evidence.

Methods: Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute.

Results: Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).

Conclusions: To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.

Keywords: Advance Care Planning; Hospice Care; Huntington’s Disease; Neurodegenerative diseases; Palliative Care; Terminal Care.

Conflict of interest statement

The authors declare that they have no competing interests.

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Review
. 2023 Apr 17;22(1):43.
doi: 10.1186/s12904-023-01168-7.

How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review

Collaborators, Affiliations
Review

How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review

Jodie Crooks et al. BMC Palliat Care. .

Abstract

Background: Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals' care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this.

Methods: Mixed-methods systematic review. Keyword searches on six electronic databases were conducted (01/2000-04/2022). The primary outcome measure was statistically significant differences in the presence of ACP in patients' care records by ethnicity: quantitative data was summarised and tabulated. The secondary outcome measures were patient and clinician-based factors affecting ACP. Data was analysed qualitatively through thematic analysis; themes were developed and presented in a narrative synthesis. Feedback on themes was gained from Patient and Public Involvement (PPI) representatives. Study quality was assessed through Joanna Briggs Institute Critical Appraisal tools and Gough's Weight of Evidence.

Results: N=35 papers were included in total; all had Medium/High Weight of Evidence. Fifteen papers (comparing two or more ethnic groups) addressed the primary outcome measure. Twelve of the fifteen papers reported White patients had statistically higher rates of formally documented ACP in their care records than patients from other ethnic groups. There were no significant differences in the presence of informal ACP between ethnic groups. Nineteen papers addressed the secondary outcome measure; thirteen discussed patient-based factors impacting ACP presence with four key themes: poor awareness and understanding of ACP; financial constraints; faith and religion; and family involvement. Eight papers discussed clinician-based factors with three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients' wishes.

Conclusions: This review found differences in the presence of legal ACP across ethnic groups despite similar presence of informal end of life conversations. Factors including low clinician confidence to deliver culturally sensitive, individualised conversations around ACP, and patients reasons for not wishing to engage in ACP (including, faith, religion or family preferences) may begin to explain some documented differences.

Trial registration: PROSPERO-CRD42022315252.

Keywords: Advance care planning; Advanced disease; Ethnicity; Health inequalities; Palliative care; Race; Systematic review.

Conflict of interest statement

The authors declare no competing interests.

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. 2023 Feb 28;23(1):113.
doi: 10.1186/s12877-023-03813-5.

Interventions for the empowerment of older people and informal caregivers in transitional care decision-making: short report of a systematic review

Affiliations

Interventions for the empowerment of older people and informal caregivers in transitional care decision-making: short report of a systematic review

Lotan Kraun et al. BMC Geriatr. .

Abstract

Background: Care transitions across different settings necessitate careful decision-making for all parties involved, yet research indicates that older people and informal caregivers do not have a strong voice in such decisions.

Objective: To provide a systematic overview of the literature about interventions designed to empower older people and informal caregivers in transitional care decision-making.

Design: A systematic review (Prospero Protocol CRD42020167961; funded by the EU's Horizon 2020 program).

Data sources: Five databases were searched: PubMed, EMBASE, Web of Science, PsycINFO, and CINAHL.

Review methods: The review included evaluations of empowerment in decision-making interventions for older people and informal caregivers facing care transitions, that were published from the inception of the databases up until April 2022. Data extractions were performed by two independent researchers and the quality of studies was assessed with the relevant JBI-critical appraisal tools. A narrative descriptive analysis of the results was performed.

Findings: Ten studies, reporting on nine interventions, and including a total of 4642 participants, were included. Interventions included transition preparation tools, support from transition coaches, shared decision-making interventions, and advance care planning. Designs and outcomes assessed were highly diverse and showed a mix of positive and lacking effects.

Conclusions: There is a lack of research on how to empower older people and their informal caregivers in transitional care decision-making. Empowerment in decision-making is usually not central in transitional care interventions, and effects on actual empowerment are mostly not assessed. Conclusions on how to empower older people and informal caregivers in transitional care decision-making cannot be drawn.

Keywords: Aged; Decision-making; Empowerment; Transitional care.

Conflict of interest statement

The authors declare that they have no competing interests.

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Review
. 2023 Jul;38(3):381-397.
doi: 10.1177/08258597231158321. Epub 2023 Feb 27.

Chinese Diaspora Communities' Knowledge of and Engagement with Advance Care Planning: A Systematic Integrative Review

Affiliations
Review

Chinese Diaspora Communities' Knowledge of and Engagement with Advance Care Planning: A Systematic Integrative Review

Zhuangshuang Li et al. J Palliat Care. 2023 Jul.

Abstract

Objectives: To synthesize evidence regarding Chinese diasporas' understanding, experience, and factors influencing engagement with advance care planning. Methods: A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. Results: 27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, "Awareness and knowledge" and "Engagement with advance care planning." There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas' original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. Significance of Results: Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.

Keywords: Asian continental ancestry group; Chinese diaspora; advance care planning; culture; engagement; knowledge; review.

Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Review
. 2023 Jun;65(6):e715-e743.
doi: 10.1016/j.jpainsymman.2023.02.003. Epub 2023 Feb 9.

Don't Throw the Baby Out With the Bathwater: Meta-Analysis of Advance Care Planning and End-of-life Cancer Care

Affiliations
Review

Don't Throw the Baby Out With the Bathwater: Meta-Analysis of Advance Care Planning and End-of-life Cancer Care

Kristin Levoy et al. J Pain Symptom Manage. 2023 Jun.

Abstract

Context: There is ongoing discourse about the impact of advance care planning (ACP) on end-of-life (EOL) care. No meta-analysis exists to clarify ACP's impact on patients with cancer.

Objective: To investigate the association between, and moderators of, ACP and aggressive vs. comfort-focused EOL care outcomes among patients with cancer.

Methods: Five databases were searched for peer-reviewed observational/experimental ACP-specific studies that were published between 1990-2022 that focused on samples of patients with cancer. Odds ratios were pooled to estimate overall effects using inverse variance weighting.

Results: Of 8,673 articles, 21 met criteria, representing 33,541 participants and 68 effect sizes (54 aggressive, 14 comfort-focused). ACP was associated with significantly lower odds of chemotherapy, intensive care, hospital admissions, hospice use fewer than seven days, hospital death, and aggressive care composite measures. ACP was associated with 1.51 times greater odds of do-not-resuscitate orders. Other outcomes-cardiopulmonary resuscitation, emergency department admissions, mechanical ventilation, and hospice use-were not impacted. Tests of moderation revealed that the communication components of ACP produced greater reductions in the odds of hospital admissions compared to other components of ACP (e.g., documents); and, observational studies, not experimental, produced greater odds of hospice use.

Conclusion: This meta-analysis demonstrated mixed evidence of the association between ACP and EOL cancer care, where tests of moderation suggested that the communication components of ACP carry more weight in influencing outcomes. Further disease-specific efforts to clarify models and components of ACP that work and matter to patients and caregivers will advance the field.

Keywords: Advance care planning; aggressive care; cancer; comfort-focused end-of-life care; communication; meta-analysis.

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Review
. 2023 May;65(5):e425-e437.
doi: 10.1016/j.jpainsymman.2023.01.017. Epub 2023 Feb 8.

Relationship Between Religion/Spirituality and the Aggressiveness of Cancer Care: A Scoping Review

Affiliations
Review

Relationship Between Religion/Spirituality and the Aggressiveness of Cancer Care: A Scoping Review

Bruna Dos Santos Carmo et al. J Pain Symptom Manage. 2023 May.

Abstract

Context: Religiosity/spirituality/religious-spiritual coping (RS) are resources used by cancer patients with cancer to help cope with the disease and may influence the preference and receipt of end-of-life (EOL) treatment.

Objectives: To examine the relationship between RS and the EOL care preferred or received by cancer patients.

Methods: This review protocol is registered on (International Prospective Register of Systematic Review, CRD42021251833) and follows the recommendations of the preferred reporting items for systematic reviews and meta-analyses checklist. Embase, Proquest, PubMed, Scopus, and Web of Science databases were consulted. Google Scholar was consulted for additional publications and gray literature. Quantitative studies including adults with any cancer type/stage were eligible. The paper selection was performed by two independent reviewers; the methodological quality was measured using the Newcastle Ottawa scale.

Results: Seventeen studies were included in the review. In general, RS is related to the preference or receipt of aggressive EOL care and with less advance care planning. Spiritual care by the medical team is related to higher referral to hospice and less aggressive care; in contrast, high spiritual support from religious communities is associated with less hospice and more aggressive care. Religious denominations influenced health care preferences, as Catholics were less likely to sign a do-not-resuscitate order and Buddhists or Taoists received more aggressive interventions at the EOL. Most studies (70%) were of high quality according to the Newcastle Ottawa scale.

Conclusion: RS is associated with more aggressive EOL treatments, as well as with lower rates of ACP in cancer patients. On the other hand, spiritual care provided by the medical team seems to be associated with less aggressive EOL care.

Keywords: End-of-life care; aggressive care; neoplasms; palliative care; religion; spirituality.

Conflict of interest statement

Disclosures and Acknowledgments BSC received a PhD scholarship provided by Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES). All authors declare no conflict of interest.

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Review
. 2022 Dec 18;19(24):17006.
doi: 10.3390/ijerph192417006.

Allostatic Load Measurement: A Systematic Review of Reviews, Database Inventory, and Considerations for Neighborhood Research

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Review

Allostatic Load Measurement: A Systematic Review of Reviews, Database Inventory, and Considerations for Neighborhood Research

Shawna Beese et al. Int J Environ Res Public Health. .

Abstract

Background: Neighborhoods are critical to understanding how environments influence health outcomes. Prolonged environmental stressors, such as a lack of green spaces and neighborhood socioeconomic disadvantage, have been associated with higher allostatic load levels. Since allostatic load levels experienced earlier in life have stronger associations with mortality risk, neighborhoods may be uniquely suited to monitor and mitigate the impacts of environmental stressors. Researchers often study allostatic load in neighborhoods by utilizing administrative boundaries within publicly accessible databases as proxies for neighborhoods.

Methods: This systematic review of reviews aims to identify commonly used biomarkers in the measurement of allostatic load, compare measurement approaches, inventory databases to study allostatic load, and spotlight considerations referenced in the literature where allostatic load is studied in neighborhoods. The review was conducted using the search term "allostatic load" in the MEDLINE, CINAHL, and PsychINFO databases. The search results were filtered to include reviews.

Results: The search returned 499 articles after deduplication. Overall, 18 synthesis reviews met the inclusion criteria and were retained for extraction. The synthesis reviews analyzed represented 238 studies published from 1995 to 2020. The original ten biomarkers were most often used to measure allostatic load. More recently, body mass index and C-reactive protein have additionally been frequently used to measure allostatic load burden.

Conclusions: The scientific contributions of this study are that we have identified a clear gap in geographic considerations when studying allostatic load. The implication of this study is that we have highlighted geographic concepts when conducting neighborhood-level research using administrative databases as a neighborhood proxy and outlined emerging future trends that can enable future study of allostatic load in the neighborhood context.

Keywords: allostasis; biomarkers; residence characteristics; review.

Conflict of interest statement

This manuscript was prepared as partial fulfillment of the PhD dissertation of the first author, Shawna Beese.

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. 2023;47(9):1006-1024.
doi: 10.1080/07481187.2022.2155888. Epub 2022 Dec 19.

Racial and ethnic differences in retrospective end-of-Life outcomes: A systematic review

Affiliations

Racial and ethnic differences in retrospective end-of-Life outcomes: A systematic review

Zainab Suntai et al. Death Stud. 2023.

Abstract

The purpose of this systematic review was to provide a comprehensive account of racial and ethnic differences in retrospective end-of-life outcomes. Studies were searched from the following databases: Abstracts in Social Gerontology, Academic Search Premier, CINAHL Plus with Full Text, ERIC, MEDLINE, PsycINFO, PubMED, and SocIndex. Studies were included if they were published in English, included people from groups who have been minoritized, included adults aged 18 and older, used retrospective data, and examined end-of-life outcomes. Results from most of the 29 included studies showed that people from groups who have been minoritized had more aggressive/intensive care, had less hospice care, were more likely to die in a hospital, less likely to engage in advance care planning, less likely to have good quality of care, and experienced more financial burden at the end of life. Implications for practice (timely referrals), policy (health insurance access), and research (intervention studies) are provided.

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Meta-Analysis

The Effectiveness of Video Decision Aid on Advance Care Planning With Adult Patients: A Systematic Review and Meta-analysis of Randomized Controlled Trials

Xiao Shu et al. J Hosp Palliat Nurs. .

Abstract

The purpose of this review was to examine the effect of video decision aids on adult patients' advance care planning-related outcomes. Seven English electronic databases (PubMed, Cochrane, MEDLINE, EMBASE, PsycINFO, CINAHL, OpenGray) and 3 Chinese databases (CNKI, WanFang, and VIP) were searched to identify relevant studies. Fourteen randomized controlled trials were included. The results of the meta-analysis showed that video decision aids reduced patients' preferences for life-prolonging care (risk ratio [RR], 0.43; 95% confidence interval [CI], 0.31-0.61; P < .01), cardiopulmonary resuscitation (RR, 0.54; 95% CI, 0.46-0.64; P < .01), and intubation tube placement (RR, 1.65; 95% CI, 1.09-2.48; P = .02) and increased patients' willingness to have a goals-of-care conversation (RR, 1.87; 95% CI, 1.32-2.65; P = .0004) and knowledge of advance care planning (RR, 0.80; 95% CI, 0.50-1.09; P < .01). However, because of the variability among the studies, the results have limitations. Future research needs to increase the sample size and improve the experimental design to confirm the impact of video decision aids on advance care planning.

Conflict of interest statement

The authors have no conflicts of interest to disclose.

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. 2023 Mar;26(3):353-359.
doi: 10.1089/jpm.2022.0028. Epub 2022 Oct 12.

Patient-Centered Discussions About Disease Progression, Symptom, and Treatment Burden in Chronic Obstructive Pulmonary Disease Could Facilitate the Integration of End-of-Life Discussions in the Disease Trajectory: Patient, Clinician, and Literature Perspectives: A Multimethod Approach

Affiliations

Patient-Centered Discussions About Disease Progression, Symptom, and Treatment Burden in Chronic Obstructive Pulmonary Disease Could Facilitate the Integration of End-of-Life Discussions in the Disease Trajectory: Patient, Clinician, and Literature Perspectives: A Multimethod Approach

Nuno Tavares et al. J Palliat Med. 2023 Mar.

Abstract

Background: Patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life. Objective: Identify current and best practice in initiating and conducting conversations about future and palliative care, by integrating data from multiple sources. Design: Multiphasic study where the findings of a systematic literature review and qualitative interviews were combined and synthesized using a triangulation protocol. Setting/Participants: Thirty-three patients with COPD and 14 clinicians from multiple backgrounds were recruited in the United Kingdom. Results: Clinicians' and patients' poor understanding about palliative care and COPD, difficulties in timing and initiating discussions, and service rationing were the main factors for late discussions. Divergent perspectives between patients and clinicians about palliative care discussions often prevented their start. Instead, early and gradual patient-centered discussions on treatment choices, symptom, and treatment burden were recommended by patients, clinicians, and the literature. Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques. Conclusion: Current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.

Keywords: COPD; advance care planning; communication; palliative care; patient preferences; patient–clinician communication; qualitative research; treatment burden.

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. 2023;43(3):181-187.
doi: 10.1097/CEH.0000000000000460. Epub 2022 Oct 10.

Digital Educational Interventions for the Development of Advanced Care Planning Skills for Medical Practitioners: A Scoping Review

Affiliations

Digital Educational Interventions for the Development of Advanced Care Planning Skills for Medical Practitioners: A Scoping Review

Kavisha Shah et al. J Contin Educ Health Prof. 2023.

Abstract

Background: Medical practitioners are important facilitators of advanced care planning but are often reluctant to engage in these conversations with patients and their families. Barriers to participation can be addressed through medical education for medical practitioners.

Introduction: The primary objective was to examine the extent to which digital educational interventions are used to foster advanced care planning skills. Secondary objectives include understanding the acceptability of these interventions and whether electronic health records can be used to personalize learning.

Methods: Online databases were used to identify relevant articles published from 2008 to 2021. Nine articles which evaluated the impact of digital learning for medical practitioners were selected. Studies eligible for inclusion in the review assessed changes in knowledge, attitudes, and practice regarding skills used in advanced care planning.

Results: All publications used a pre-post study design with education delivered solely online. Only three studies focused on completing advance care plans or directives (33%). All but two studies recorded improvements in knowledge and/or attitudes toward planning (78%) while three studies recorded improvements in clinical practice (33%). The review suggests prior clinical or personal experiences could be used to personalize education.

Discussion: The literature revealed that using digital education to develop advanced care planning skills is relatively unexplored despite the ability of this type of learning to improve professional knowledge and confidence. Digital devices can also improve access to relevant information at the point-of-care. Personalized interventions that incorporate prior clinical experiences, potentially extracted from health records, could be used to optimize outcomes.

Conflict of interest statement

Disclosures: The authors declare no conflict of interest.

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Review
. 2022 Dec;23(12):1916-1925.e1.
doi: 10.1016/j.jamda.2022.08.008. Epub 2022 Sep 24.

Prevalence and Factors Associated with Pain in Nursing Home Residents: A Systematic Review of the Literature

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Review

Prevalence and Factors Associated with Pain in Nursing Home Residents: A Systematic Review of the Literature

Connie S Cole et al. J Am Med Dir Assoc. 2022 Dec.

Abstract

Objectives: To describe the pain prevalence in nursing home (NH) residents and the factors associated with the experience of pain.

Design: Systematic review of descriptive studies.

Setting and participants: Three electronic databases were searched from 2010 to September 2020 in English. Descriptive studies that examined pain in NH residents, reported pain prevalence, and/or associated factors were included. Studies that focused exclusively on a specific disease or type of care such as cancer or hospice were excluded.

Methods: Two reviewers independently screened, selected, extracted data, and assessed risk of bias from included studies; narrative synthesis was performed. The review was guided by the Biopsychosocial Model of Chronic Pain for Older Adults.

Results: Twenty-six studies met our inclusion criteria. Overall, the prevalence of current pain ranged from 22.2% to 85.0%, the prevalence of persistent pain ranged from 19.5% to 58.5%, and the prevalence of chronic pain ranged from 55.9% to 58.1%. A variety of pain scales were used reporting higher pain prevalence for those using self-report measures (31.8% to 78.8%) or proxy measures (29.5% to 85.0%) compared with using chart review (22.2% to 29.3%) as the source of pain information. The studies reviewed provide support that certain diseases and clinical conditions are associated with pain. Impairment in activities of daily living (ADL) (12 studies), cognition (9 studies), depression (9 studies), and arthritis (9 studies) are the most widely studied factors, whereas depression, ADL impairment, arthritis, dementia, and cognitive impairment present the strongest association with pain.

Conclusion and implications: This review highlights the complexities of pain in NH residents and has implications for both clinical practice and future research. Understanding the factors that underlie the experience of pain, such as depression, is useful for clinicians evaluating pain and tailoring management therapies. In addition, the gaps in knowledge uncovered in this review are important areas for future research.

Keywords: Nursing home; long-term care; pain; pain management.

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Review
. 2023 Apr 1;74(4):381-392.
doi: 10.1176/appi.ps.202200003. Epub 2022 Sep 21.

Mental Health Service Users' Perspectives on Psychiatric Advance Directives: A Systematic Review

Affiliations
Review

Mental Health Service Users' Perspectives on Psychiatric Advance Directives: A Systematic Review

Esther Braun et al. Psychiatr Serv. .

Abstract

Objective: Psychiatric advance directives (PADs) are documents that allow users of mental health services to express their preferences for treatment in future mental health crises. To increase the use of PADs in psychiatric practice, it is helpful to consider how service users view PADs and the factors that facilitate or hinder PAD creation and implementation. A systematic review of the empirical literature on this topic may help inform evidence-based policy making.

Methods: A systematic review concordant with PRISMA guidelines was conducted. Relevant electronic databases were searched up to July 2, 2021. Articles containing original empirical data on service users' perspectives on PADs were included. Data were analyzed thematically, tabulated, and narratively synthesized.

Results: Fifty-three articles were identified and included. The following categories were identified: general preferences regarding factors such as legal force and revocability; benefits of PADs at the personal, treatment-related, and social levels; challenges and barriers concerning PAD creation and application; and possible and experienced facilitators of PAD creation.

Conclusions: Users of mental health services are highly interested in PADs and regard them as tools to improve their involvement in care. They generally prefer legally binding PADs that can be revoked only when users are competent to consent. Barriers reported by service users were mainly related to the creation and application of PADs, and support in PAD creation was the most important facilitator identified. The involvement of mental health professionals in creating PADs appears essential to realize the benefits of PADs and to reduce barriers to their use.

Keywords: Advance care planning; Advance statement; Informed consent; Psychiatric advance directive; Psychiatric will; User involvement.

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Review
. 2023 Jan 1;74(1):44-55.
doi: 10.1176/appi.ps.202200002. Epub 2022 Aug 30.

The Content of Psychiatric Advance Directives: A Systematic Review

Affiliations
Review

The Content of Psychiatric Advance Directives: A Systematic Review

Anne-Sophie Gaillard et al. Psychiatr Serv. .

Abstract

Objective: Psychiatric advance directives (PADs) enable users of mental health services to express their treatment preferences for future mental health crises. PAD completion rates remain low despite high rates of interest among service users and empirically confirmed benefits of their use. A systematic review of service users' preferences regarding the content of PADs could be a valuable resource for clinicians and policy makers and might help reduce barriers to PAD implementation.

Methods: A systematic review concordant with PRISMA guidelines was conducted. CINAHL, Cochrane, EMBASE, PsycINFO, MEDLINE, PubMed, SCOPUS, and Web of Science databases were searched up to July 2, 2021. Included articles contained original empirical data on service users' preferences regarding the content of PADs or a document analysis of existing PADs. Studies were analyzed thematically, and a narrative synthesis was conducted. The Mixed Methods Appraisal Tool was used to assess the methodological quality and risk of bias of the included studies.

Results: The search yielded 4,047 articles, 42 of which were eligible for inclusion. Six themes emerged (most of which included subthemes): signs of crisis, general treatment approach, preferences regarding the treatment setting, treatment preferences, coercion, and social instructions.

Conclusions: The concern that PADs may be unclear or incompatible with practice standards was not confirmed. Service users generally included clear, comprehensible, and clinically relevant information in their PADs, often providing underlying reasons for their preferences. These reasons were related to previous adverse effects of medication and personal experiences with hospital admissions.

Keywords: Advance care planning; Advance statement; Informed consent; Mental health; Psychiatric advance directives; Psychiatric will.

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Review
. 2022 Sep;23(9):1448-1460.e1.
doi: 10.1016/j.jamda.2022.07.017. Epub 2022 Aug 11.

The Effect of Advance Care Planning Intervention on Hospitalization Among Nursing Home Residents: A Systematic Review and Meta-Analysis

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Review

The Effect of Advance Care Planning Intervention on Hospitalization Among Nursing Home Residents: A Systematic Review and Meta-Analysis

Apiradee Pimsen et al. J Am Med Dir Assoc. 2022 Sep.

Abstract

Objective: To evaluate the effect of advance care planning (ACP) interventions on the hospitalization of nursing home residents.

Design: Systematic review and meta-analysis.

Setting and participants: Nursing homes and nursing home residents.

Methods: A literature search was systematically conducted in 6 electronic databases (Embase, Ovid MEDLINE, Cochrane Library, CINAHL, AgeLine, and the Psychology & Behavioral Sciences Collection), in addition to hand searches and reference list checking; the articles retrieved were those published from 1990 to November 2021. The eligible studies were randomized controlled trials, controlled trials, and pre-post intervention studies describing original data on the effect of ACP on hospitalization of nursing home residents; these studies had to be written in English. Two independent reviewers appraised the quality of the studies and extracted the relevant data using the Joanna Briggs Institute abstraction form and critical appraisal tools. A study protocol was registered in PROSPERO (CRD42022301648).

Results: The initial search yielded 744 studies. Nine studies involving a total of 57,180 residents were included in the review. The findings showed that the ACP reduced the likelihood of hospitalization [relative risk (RR) 0.54, 95% CI 0.47-0.63; I2 = 0%)], it had no effect on emergency department (ED) visits (RR 0.60, 95% CI 0.31-1.42; I2 = 99), hospice enrollment (RR 0.98, 95% CI 0.88-1.10; I2 = 0%), mortality (RR 0.83, 95% CI 0.68-1.00; I2 = 4%), and satisfaction with care (standardized mean difference: -0.04, 95% CI -0.14 to -0.06; I2 = 0%).

Conclusion and implications: ACP reduced hospitalizations but did not affect the secondary outcomes, namely, ED visits, hospice enrollment, mortality, and satisfaction with care. These findings suggest that policy makers should support the implementation of ACP programs in nursing homes. More robust studies are needed to determine the effects of ACP on ED visits, hospice enrollment, mortality, and satisfaction with care.

Keywords: Advance care planning; hospitalization; nursing home residents.

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Review
. 2023 Jan;55(1):272-290.
doi: 10.1111/jnu.12804. Epub 2022 Aug 10.

Impact of advance care planning and end-of-life conversations on patients with cancer: An integrative review of literature

Affiliations
Review

Impact of advance care planning and end-of-life conversations on patients with cancer: An integrative review of literature

Poonam Goswami. J Nurs Scholarsh. 2023 Jan.

Abstract

Purpose: The purpose was to review published articles to examine the impact of advance care planning (ACP) and end-of-life (EOL) conversations on patients with cancer, and aimed to compare the findings for congruency with the goals of ACP.

Design and method: The study was guided by Whittemore and Knafl's integrative review methodology. Articles published between 2015 to 2020 were identified through electronic databases. The search included: Cumulative Index for Nursing Allied Health Literature (CINAHL), PubMed, MEDLINE-Ovid, and MEDLINE full text, and using the MeSH terms. Two hundred and five (205) articles were identified and screened for eligibility, and 15 articles were appraised.

Findings: The fifteen (15) articles that met the inclusion criteria included five (5) qualitative, eight (8) quantitative, and two (2) mixed methods. The review analysis revealed six themes emerged in three categories: cancer patients' experience with advance care planning (1) patients' prognostic awareness, (2) decision making; cancer patients' perceived outcomes with advance care planning (3) patient-provider relationship, (4) concordance in care based on goals, and cancer patients' propositions related to advance care planning, (5) timings of advance care planning discussions, and (6) support during ACP and/or EOL conversations.

Conclusion: ACP and EOL conversations play a critical role in cancer patients' awareness of their disease and prognosis and help them in making end-of-life care decisions.

Clinical relevance: There exists a need for earlier ACP and EOL conversations with cancer patients with emotional support during these conversations.

Keywords: advance care planning; cancer patient preferences; cancer patients; end-of-life; oncology patients; patient experience.

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. 2022 Aug 5:302228221116697.
doi: 10.1177/00302228221116697. Online ahead of print.

A Systematic Review of Barriers and Facilitators to Implementing Assisted Dying: A Qualitative Evidence Synthesis of Professionals' Perspectives

Affiliations

A Systematic Review of Barriers and Facilitators to Implementing Assisted Dying: A Qualitative Evidence Synthesis of Professionals' Perspectives

Eric Byrnes et al. Omega (Westport). .

Abstract

Assisted dying is a divisive topic and draws both lamenting and approving commentary from political, medical, legal, and philosophical domains. This systematic review and qualitative evidence synthesis aims to identify the factors that healthcare professionals experience when working within assisted dying frameworks. PRISMA guidelines for systematic reviews were followed. Search results yielded 15,426 papers with 39 papers meeting inclusion criteria for this review. Remaining papers were subjected to critical appraisal and a thematic synthesis. Eight themes fell under the domain of 'barrier' and represented different personal and professional factors that hinder professionals from delivering assisted dying healthcare. Five themes came under the domain of 'facilitators' and represent factors that contribute to the smooth implementation and delivery of assisted dying services. Health professionals experience a range of factors that both impede and propel delivery of assisted dying frameworks.

Keywords: adults and death; advance directives; assisted dying/suicide; attitudes death; culture; death; death awareness movement; death education; euthanasia; extraordinary treatments.

Conflict of interest statement

Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Review
. 2022 Sep 1;16(3):94-101.
doi: 10.1097/SPC.0000000000000603. Epub 2022 Jul 22.

Palliative care delivery changes during COVID-19 and enduring implications in oncology nursing: a rapid review

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Review

Palliative care delivery changes during COVID-19 and enduring implications in oncology nursing: a rapid review

Kristin Levoy et al. Curr Opin Support Palliat Care. .

Abstract

Purpose of review: A rapid review was conducted to synthesize evidence of palliative care delivery changes during the COVID-19 pandemic. Changes were synthesized according to the eight domains of high-quality palliative care and enduring implications for oncology nurses beyond the pandemic discussed.

Recent findings: The most significant changes occurred in the structure and processes of palliative care (Domain 1), where increased utilization of telehealth was critical in circumventing barriers imposed by COVID-19 mitigation. The suboptimal availability of community-based psychosocial supports for patients and caregivers and inadequate health system-based psychosocial supports for healthcare providers were highlighted (Domains 3-5). The pandemic also ushered in an increased emphasis on the need for advance care planning (ACP), where integrating its delivery earlier in the outpatient setting and shifting policy to promote subsequent virtual documentation (Domain 8) were essential to ensure care preferences were clarified and accessible before health crises occurred.

Summary: Continuing to embrace and sustain systems-level changes with respect to telehealth, psychosocial supports, and ACP are critical to bridging gaps in palliative care delivery underscored by the pandemic. Oncology nurses are well positioned to fill these gaps in care beyond the pandemic by providing evidence-based, palliative care throughout the cancer continuum.

Conflict of interest statement

There are no conflicts of interest.

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. 2022 Aug 4;17(8):e0272436.
doi: 10.1371/journal.pone.0272436. eCollection 2022.

The effect of end-of-life decision-making tools on patient and family-related outcomes of care among ethnocultural minorities: A systematic review

Affiliations

The effect of end-of-life decision-making tools on patient and family-related outcomes of care among ethnocultural minorities: A systematic review

Ayah Nayfeh et al. PLoS One. .

Abstract

Background: End-of-life decision-making tools are used to establish a shared understanding among patients, families and healthcare providers about medical treatment and goals of care. This systematic review aimed to understand the availability and effect of end-of-life decision-making tools on: (i) goals of care and advance care planning; (ii) patient and/or family satisfaction and well-being; and (iii) healthcare utilization among racial/ethnic, cultural, and religious minorities.

Methods: A search was conducted in four electronic databases (inception to June 2021). Articles were screened for eligibility using pre-specified criteria. We focused on adult patients (aged ≥18 years) and included primary research articles that used quantitative, qualitative, and mixed-methods designs. Complementary quality assessment tools were used to generate quality scores for individual studies. Extracted data were synthesized by outcome measure for each type of tool, and an overall description of findings showed the range of effects.

Results: Among 14,316 retrieved articles, 37 articles were eligible. We found that advance care planning programs (eleven studies), healthcare provider-led interventions (four studies), and linguistically-tailored decision aids (three studies) increased the proportion of patients documenting advance care plans. Educational tools (three studies) strongly reduced patient preferences for life-prolonging care. Palliative care consultations (three studies) were strongly associated with do-not-resuscitate orders. Advance care planning programs (three studies) significantly influenced the quality of patient-clinician communication and healthcare provider-led interventions (two studies) significantly influenced perceived patient quality of life.

Conclusion: This review identified several end-of-life decision-making tools with impact on patient and family-related outcomes of care among ethnocultural minorities. Advance care planning programs, healthcare provider-led interventions and decision aids increased documentation of end-of-life care plans and do-not-resuscitate orders, and educational tools reduced preferences for life-prolonging care. Further research is needed to investigate the effect of tools on healthcare utilization, and with specific patient population subgroups across different illness trajectories and healthcare settings.

Conflict of interest statement

The authors have declared that no competing interests exist.

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. 2022 Oct;34(10):2261-2294.
doi: 10.1007/s40520-022-02184-y. Epub 2022 Jul 26.

A model for the uptake of advance care planning in older cancer adults: a scoping review

Affiliations

A model for the uptake of advance care planning in older cancer adults: a scoping review

Yiping Chen et al. Aging Clin Exp Res. 2022 Oct.

Abstract

Background and aims: Advance care planning (ACP) might assist older cancer patients in expressing their goals, values, and care preferences; yet, the ACP uptake rates in this group are low. The goal of this study is to discover factors that influence ACP uptake in older cancer adults and to construct a model that integrates these factors.

Methods: Using Arksey and O' Malley's methodology, we systematically searched seven electronic databases of ACP literature in older cancer adults from inception to March 2022. To identify factors linked to ACP uptake in elderly cancer patients, researchers used a pre-piloted extraction form. There were two phases to the thematic analysis of the labeled factors. First, factors were grouped into one of three categories using a directed content analysis approach: patient context, provider context, or mechanism. Second, we took both a deductive and inductive thematic approach to identifying and coding contributing factors in each category to identify themes and subthemes. Deductive coding was undertaken using the Andersen's Behavioral Model of Health Services Utilization. Finally, results were visualized into a conceptual model.

Results: In the including 37 articles, 131 factors were extracted. Thematic analysis of patient context factors (n = 72) showed that ACP uptake in older cancer adults is associated with predisposing characteristics, enabling resources and need. Factors attributed to provider context (n = 28) concerned predisposing characteristics and enabling resources. Mechanism factors (n = 31) are related to perceived value and patient trust, and the C-ACP uptake model was created.

Conclusion: ACP uptake in older cancer patients is commonly influenced by patient-provider-related contextual factors, and highlights the fact that ACP uptake is more likely to be mediated through both perceived value and patient trust. This review serves as a resource for providers exploring ACP implementation options in older cancer adults.

Keywords: Advance care planning; Cancer; Model; Older adults; Scoping review.

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. 2022 Jul 1:11:100266.
doi: 10.1016/j.resplu.2022.100266. eCollection 2022 Sep.

Outcomes in adults living with frailty receiving cardiopulmonary resuscitation: A systematic review and meta-analysis

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Outcomes in adults living with frailty receiving cardiopulmonary resuscitation: A systematic review and meta-analysis

Joseph Hamlyn et al. Resusc Plus. .

Abstract

Background: Frailty is a clinical expression of adverse ageing which could be a valuable predictor of outcomes from cardiac arrest. The aim of this systematic review was to evaluate survival outcomes in adults living with frailty versus adults living without frailty receiving cardiopulmonary resuscitation (CPR) following cardiac arrest.

Methods: A comprehensive search of MEDLINE, EMBASE, CINAHL, and Web of Science databases was performed using pre-defined search terms, with no date or language restrictions applied. Prospective and retrospective observational studies measuring outcomes from CPR in adults assessed for frailty using an accepted clinical definition were selected.

Results: Eight eligible studies were included. Seven retrospective observational studies presenting high methodological quality were included in a meta-analysis comprising 1704 participants. Frailty was strongly associated with an increased likelihood of mortality after CPR, with moderate inter-study heterogeneity (OR = 3.56, 95% CI = 2.74-4.63, I2 = 71%).

Discussion: This review supports the consideration of frailty status in a holistic approach to CPR. The present findings suggest that frailty status provides valuable prognostic information and could complement other known pre-arrest prognostic factors such as comorbidities in the context of Do Not Attempt CPR consideration. Awareness of the poorer outcomes in those living with frailty could support the identification of individuals less likely to benefit from CPR. Validation of our findings and evaluation of quality-of-life in frail individuals surviving cardiac arrest are prerequisites for the future integration of frailty status into CPR clinical decision-making.

Registration: Prospectively registered on PROSPERO: CRD42020223670.

Keywords: Advance Care Planning; CFS; CPR; Futility; Mortality; Rockwood.

Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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. 2022 Jul 4:bmjspcare-2021-003488.
doi: 10.1136/spcare-2021-003488. Online ahead of print.

Advance care planning and caregiver outcomes: intervention efficacy - systematic review

Affiliations

Advance care planning and caregiver outcomes: intervention efficacy - systematic review

Chetna Malhotra et al. BMJ Support Palliat Care. .

Abstract

Context: Caregivers make difficult end-of-life (EOL) decisions for patients, often adversely affecting their own psychological health. Understanding whether advance care planning (ACP) interventions benefit caregivers can enable healthcare systems to use these approaches to better support them.

Objective: We conducted a systematic review and meta-analysis to identify and quantify the impacts of ACP interventions on caregiver outcomes.

Methods: We searched MEDLINE, Embase and Cochrane databases for English-language randomised or cluster randomised controlled trials (RCTs) published until May 2021. Two reviewers independently assessed methodological quality using the Physiotherapy Evidence-Based Database Scale. We conducted a narrative synthesis for each outcome. Difference between arms with a p value of <0.05 was considered statistically significant.

Results: Of the 3487 titles reviewed, 35 RCTs met eligibility; 68.6% were rated high quality. Included RCTs were heterogeneous in intervention characteristics, setting and disease. Meta-analysis of 17 RCTs showed that ACP had large and significant improvement in congruence in EOL care preferences between caregivers and patients (standardised mean difference 0.73, 95% CI 0.42 to 1.05). The effect of ACP on this outcome, however, declined over time. We also found some evidence that ACP improved bereavement outcomes (three of four RCTs), satisfaction with care quality/communication (four of the six RCTs), reduced decisional conflict (two of the two RCTs) and burden (one RCT). No study showed that mental health of caregivers were adversely affected.

Conclusion: The review provides most comprehensive evidence about the efficacy of ACP on caregiver outcomes. Findings suggest some evidence of benefit of ACP on caregiver outcomes.

Keywords: Bereavement; Communication; End of life care; Family management.

Conflict of interest statement

Competing interests: None declared.

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Review
. 2022 Jun 3;9(6):830.
doi: 10.3390/children9060830.

Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review

Affiliations
Review

Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review

Julie Brunetta et al. Children (Basel). .

Abstract

Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systematic review was aimed to evaluate the age appropriateness of pACP interventions by assessing their characteristics, content, and evidence. CINAHL, Embase and MEDLINE were searched from 1 January 1998 to 31 August 2020 in order to identify peer-reviewed articles containing strategies and tools to facilitate pACP in both children (0-18 years) with life-limiting conditions and their families. An assessment of quality was performed using Cochrane tools and COREQ. The full protocol is available as PROSPERO CRD42020152243. Thirty-one articles describing 18 unique pACP tools were included. Most tools were developed for adolescents and young adults. In most cases, the interventions tried to assess the child's and family's preferences concerning their current and future hopes, wishes, and goals of the care. This was aimed to enhance communication about these preferences between children, their families, and health-care providers and to improve engagement in pACP. The relevance of an age-appropriate approach was mentioned in most articles, but this was mainly implicit. Seven articles implemented age-appropriate elements. Six factors influencing age appropriateness were identified. Tools to support pACP integrated age-appropriate elements to a very limited extent. They mainly focused on adolescents. The involvement of children of all ages may need a more comprehensive approach.

Keywords: adolescents; advance care planning; age-appropriate; cognitive functions; development; interventions; life-limiting conditions; palliative care; pediatrics; young adults.

Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

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Meta-Analysis
. 2022 Aug:132:104276.
doi: 10.1016/j.ijnurstu.2022.104276. Epub 2022 Apr 30.

The effects of advance care planning intervention on nursing home residents: A systematic review and meta-analysis of randomised controlled trials

Affiliations
Meta-Analysis

The effects of advance care planning intervention on nursing home residents: A systematic review and meta-analysis of randomised controlled trials

Alina Yee Man Ng et al. Int J Nurs Stud. 2022 Aug.

Abstract

Background: Advance care planning is a communication and decision-making process during which people express their wishes for future healthcare and treatment decisions. Advance care planning is particularly relevant to frail older adults. Recently, more advance care planning interventions have been implemented in nursing homes using randomised controlled trial approaches; however, no meta-analysis has been performed evaluating and synthesising the effect of advance care planning in nursing homes.

Objective: To determine the effect of advance care planning interventions on end-of-life outcomes in nursing home populations.

Design: Systematic review and meta-analysis of randomised controlled trials.

Data sources: Medline, EMBASE, Cochrane Library, Medical database, British Nursing Index, PsycInfo and CINAHL Plus from inception to March 2021.

Review methods: Randomised controlled trials or cluster randomised controlled trials implementing advance care planning interventions in nursing homes, and studies reporting end-of-life outcomes and published in English were included. Studies in which advance care planning was part of a more comprehensive intervention were excluded. The outcomes were evaluated using pooled odds ratios (ORs) or standardised mean differences (SMDs) with random-effects meta-analysis models. A meta-regression was performed to evaluate the heterogeneity of the included studies. The Cochrane Risk of Bias Tool 2.0 was used to assess the methodological quality of the included studies.

Results: Nine trials were identified with 2905 participants, with sample sizes ranging from 87 to 1292. The number of nursing homes involved ranged from 1 to 64. The types of advance care planning intervention differed, with most studies adopting formal education or training for nursing home staff, while the remainder adopted train-the-trainer approaches. The quality of the included studies varied, with two out of nine scoring low in overall risk of bias. Our comprehensive meta-analysis indicated with moderate heterogeneity that advance care planning interventions significantly increased the documentation of end-of-life care preferences (OR = 1.95, 95% CI: 1.64, 2.32), but not satisfaction with end-of-life care from families' perspectives (SMD = 0.08, 95% CI: -0.08, 0.23). The meta-regression did not identify any variables in advance care planning interventions to explain the heterogeneity.

Conclusion: Advance care planning intervention yielded beneficial effects in nursing home residents by increasing the number of documented end-of-life care wishes but demonstrated no effect on satisfaction with end-of-life care from family caregivers' perspectives. This review highlights the need for more rigorously designed implementation studies to examine the effects of advance care planning interventions on healthcare outcomes among frail older adults in nursing homes.

Keywords: Advance care planning; End-of-life; Nursing home residents; Systematic review; meta-analysis.

Conflict of interest statement

Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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Review
. 2023 Feb;21(1):127-145.
doi: 10.1017/S1478951522000451.

Leaving a lasting legacy: A scoping review of ethical wills

Affiliations
Review

Leaving a lasting legacy: A scoping review of ethical wills

Sarah A Neller et al. Palliat Support Care. 2023 Feb.

Abstract

Objectives: Palliative care guidelines recommend an interdisciplinary approach to address patients' awareness of mortality and need for end-of-life preparation. An ethical will is a nonlegal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will.

Methods: We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation.

Results: Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. The most common purposes were to be remembered, address mortality, clarify life's meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality.

Significance of results: Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

Keywords: End of life; Generativity; Interdisciplinary; Legacy; Palliative care.

Conflict of interest statement

We have no known conflicts of interest to disclose.

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. 2022 Apr 12:13:849100.
doi: 10.3389/fpsyg.2022.849100. eCollection 2022.

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

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How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

Mandy Visser et al. Front Psychol. .

Abstract

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning (ACP) for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In November 2020, seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed, and Cinahl). This search was updated in December 2021. The search strategy consisted of three tiers (related terms to "dementia," "communication" and "ACP"), intersected by using the Boolean term "AND," and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics (i.e., importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged clustered around two themes (i.e., communicating with people with dementia in ACP, and changes in communication due to dementia). This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences.

Keywords: advance care planning; communication; dementia; palliative aged care; scoping review.

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Review
. 2022 Apr 21:16:26323524221092457.
doi: 10.1177/26323524221092457. eCollection 2022.

Intersectoral communication amongst healthcare providers regarding care plans: a scoping review

Affiliations
Review

Intersectoral communication amongst healthcare providers regarding care plans: a scoping review

Jodi Langley et al. Palliat Care Soc Pract. .

Abstract

Palliative care has become an increasingly important public health issue due to the rising acceptance of implementing a health promoting palliative care approach. To explore communication pathways that would facilitate implementation of this approach, we conducted a scoping review examining communication and enactment of care plans for older adults with life-limiting illnesses across health, social and community sectors. We used a scoping review methodology to map the current literature on communication plans between primary care and other sectors (community, health, and social). Five databases were searched MEDLINE (ovid), CINAHL (EBSCO), EMBASE (Elsevier), PsychInfo (EBSCO), and Scopus. The database search identified 5,289 records, after screening and hand-searching a total of 28 articles were extracted. Three major themes were determined through the records: (1) the importance of professional relationships across sectors, (2) the importance of community navigators in sharing the care plan, and (3) and creating comprehensive and multidisciplinary care plans. Findings suggested that enacting quality care plans is important to healthcare providers; the use of an electronic health records system can be useful in ensuring that all healthcare and community systems are in place to aid patients for better community-based care. Community navigators were also key to ensure that plans are communicated properly and efficiently. Further research is needed to determine how having a clear and properly implemented communication system for a healthcare system could facilitate community sector involvement in implementing care plans.

Keywords: advanced care plan; healthcare communication; intersectoral communication; palliative care; primary care.

Conflict of interest statement

Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Review
. 2022 Apr 20;24(4):e33320.
doi: 10.2196/33320.

Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review

Affiliations
Review

Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review

Charlèss Dupont et al. J Med Internet Res. .

Abstract

Background: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature.

Objective: This study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated.

Methods: We systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28-a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables.

Results: A total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources.

Conclusions: A variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence.

Trial registration: PROSPERO CRD42020184112; https://tinyurl.com/mruf8b43.

Keywords: advance care planning; health communication; quality of online content; systematic review; web-based tools.

Conflict of interest statement

Conflicts of Interest: None declared.

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. 2022 Apr 19:bmjspcare-2021-003507.
doi: 10.1136/bmjspcare-2021-003507. Online ahead of print.

Efficacy of models of palliative care delivered beyond the traditional physician-led, subspecialty consultation service model: a systematic review and meta-analysis

Affiliations

Efficacy of models of palliative care delivered beyond the traditional physician-led, subspecialty consultation service model: a systematic review and meta-analysis

Mihaela S Stefan et al. BMJ Support Palliat Care. .

Abstract

Objective: This meta-analysis aimed to determine the effectiveness of non-physician provider-led palliative care (PC) interventions in the management of adults with advanced illnesses on patient-reported outcomes and advance care planning (ACP).

Methods: We included randomised trials and cluster trials published in MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Register of Controlled Trials and ClinicalTrials.gov searched until July 2021 that examined individuals ≥18 years with a diagnosis of advanced, life-limiting illness and received a PC intervention led by a non-physician (nurse, advance practitioner or social worker). Our primary outcome was quality of life (QOL), which was extracted as unadjusted or adjusted estimates and measures of variability. Secondary outcomes included anxiety, depression and ACP.

Results: Among the 21 studies (2370 subjects), 13 included patients with cancer, 3 with heart failure, 4 with chronic respiratory disease and 1 with chronic kidney disease. The interventions were diverse and varied with respect to team composition and services offered. For QOL, the standardised mean differences suggested null effects of PC interventions compared with usual care at 1-2 months (0.04; 95% CI=-0.14 to 0.23, n=10 randomised controlled trials (RCTs)) and 6-7 months (0.10; 95% CI=-0.15 to 0.34, n=6 RCTs). The results for anxiety and depression were not significant also. For the ACP, there was a strong benefit for the PC intervention (absolute increase of 0.32% (95% CI=0.06 to 0.57).

Conclusions: In this meta-analysis, PC interventions delivered by non-physician were not associated with improvement in QOL, anxiety or depression but demonstrated an impact on the ACP discussion and documentation.

Keywords: chronic conditions; other cancer; quality of life; supportive care.

Conflict of interest statement

Competing interests: None declared.

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Review
. 2022 Mar 15:16:26323524221083676.
doi: 10.1177/26323524221083676. eCollection 2022.

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review

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Review

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review

Anke Erdmann et al. Palliat Care Soc Pract. .

Abstract

Amyotrophic lateral sclerosis (ALS) leads to death on average 2-4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options? (2) What are the challenges for all involved in decision making and communication about this topic? To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS. We included texts published between 2008 and 2018, and updated our search to May 2020. Sources were analysed in MAXQDA using deductively and inductively generated codes. After the final analysis, 123 full texts were included in this review. We identified a wide range of communicative challenges and six different and, in part, opposite communication patterns: avoiding or delaying communication on end-of-life issues, openly considering dying and actively seeking assistance, ignoring or disregarding patients' wishes, discussing and respecting the patients' wishes, engaging in advance care planning and avoiding or delaying advance care planning. The literature reveals a very heterogeneous response to end-of-life issues in ALS, despite several good-practice suggestions, examples and guidelines. We derive a strong need for harmonization and quality assurance concerning communication with PALS. Avoiding or delaying communication, decision making and planning, as well as ignoring or disregarding the patient's will by HCP can be judged as a violation of the ethical principles of autonomy and non-maleficence.

Keywords: advance care planning; assisted suicide; communication strategies; end-of-life decision making; euthanasia; wish to hasten death.

Conflict of interest statement

Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Review
. 2022 Sep;41(3):377-403.
doi: 10.1017/S0714980821000283. Epub 2022 Mar 14.

Advance Care Planning for Seniors Diagnosed with Dementia: A Scoping Review of the Canadian Literature

Affiliations
Review

Advance Care Planning for Seniors Diagnosed with Dementia: A Scoping Review of the Canadian Literature

Bronté K Anderson et al. Can J Aging. 2022 Sep.

Abstract

Advance care planning (ACP) is commonly recommended for persons living with dementia. Increasing age and uncertain disease trajectory add complexity to this process. A scoping review of the Canadian literature was completed to assess the feasibility and acceptability of ACP for seniors (≥ 65 years of age) diagnosed with dementia and to provide practice, policy, and research recommendations towards ACP as a critical aspect of care. Twenty-nine articles were grouped into five themes: (1) feasibility of patient engagement in ACP; (2) opinions regarding medical assistance in dying (MAiD) for incompetent patients; (3) knowledge translation to support persons living with dementia, professionals, and caregivers; (4) barriers to and facilitators of the delivery of holistic dementia care; and (5) Indigenous health considerations. Additional research should consider socio-demographic and social/cultural factors associated with older persons living with dementia's engagement in ACP. Future policies warrant a multidisciplinary approach when reviewing legalities. Finally, ACP knowledge translation should become a routine aspect of dementia care.

Keywords: Canada; advance care planning (ACP); aging; aide médicale à mourir; dementia; démence; examen de la portée; medical assistance in dying (MAiD); personnes âgées; planification préalable des soins (PPS); scoping review; seniors; vieillissement.

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Review
. 2022 Feb 4;11(1):e28137.
doi: 10.2196/28137.

Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review

Affiliations
Review

Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review

Shaniff Esmail et al. Interact J Med Res. .

Abstract

Background: This review focused on how sexual consent ability was determined, managed, and enhanced in people with cognitive disabilities, with the aim of better understanding the recurring themes influencing the design and implementation of these approaches. If a person's consensual ability becomes compromised, owing to either an early or late-onset cognitive disability, the formal systems involved must establish plans to balance the individual's rights and restrictions on sexual expression. This review identified these plans, focusing on how they promoted the intimacy rights of the individual.

Objective: This study aims to identify approaches that determine sexual consent ability in people with cognitive disabilities, identify the means of managing and enhancing sexual consent ability in people with cognitive disabilities, and note the recurring themes that influence how these approaches and management systems are designed and implemented.

Methods: A systematic literature review was performed using EBSCOhost (Social Gerontology, CINAHL Plus, MEDLINE, and SocINDEX), Embase, PsyInfo, and Scopus to locate reports on terms expanded on sexual consent and cognitive disability.

Results: In all, 47 articles were identified, featuring assessment practices, legal case studies, and clinical standards for managing sexual consent capacity in people with cognitive disabilities. A total of 8 studies (5/8, 63% qualitative and 3/8, 38% quantitative) were included out of the 47 articles identified. Approaches for determining sexual consent included functional capacity and person-centered, integrated, and contextual approaches. Management of sexual consent ability included education, attitude, and advanced directives and support networks. The recurring themes that influenced these approaches included the 3 legal criteria of consent, American Bar Association and American Psychological Association Model, Lichtenberg and Strzepek Instrument, Ames and Samowitz Instrument, Lyden approach, Mental Capacity Act of 2005, and Vancouver Coastal Health Authority of 2009.

Conclusions: Determining sexual consent takes a holistic approach, with individuals judged in terms of their adaptive abilities, capacities, and human rights. The attitudes of those using this holistic approach need to be balanced; otherwise, the sexual rights of assessed people could be moved either in favor or against them. The ideal outcome, after person-centered considerations of those living with cognitive disabilities includes the people themselves being involved in the process of personalizing these approaches used to facilitate healthy intimate relationships.

Keywords: capacity; dementia; disability; ethics; long-term care; sexual consent; sexual expression.

Conflict of interest statement

Conflicts of Interest: None declared.

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Review
. 2022 Jan 12;19(2):803.
doi: 10.3390/ijerph19020803.

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

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Review

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Andrea Giordano et al. Int J Environ Res Public Health. .

Abstract

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.

Keywords: advance care planning; dementia; end of life care; ethics; nervous system diseases; neurodegenerative disorders; palliative care; review literature; shared decision making.

Conflict of interest statement

A.L. has served as a Biogen, Merck Serono, Novartis, Roche, Sanofi/ Genzyme and Teva Advisory Board Member. She received congress and travel/accommodation expense compensations or speaker honoraria from Biogen, Merck, Mylan, Novartis, Sanofi/Genzyme, Teva and Fondazione Italiana Sclerosi Multipla (FISM). Her institutions received research grants from Novartis. The other authors declare no conflict of interest.

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Review
. 2022 Jan 11;14(2):328.
doi: 10.3390/cancers14020328.

Predictors of Mortality in Patients with Advanced Cancer-A Systematic Review and Meta-Analysis

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Review

Predictors of Mortality in Patients with Advanced Cancer-A Systematic Review and Meta-Analysis

Catherine Owusuaa et al. Cancers (Basel). .

Abstract

To timely initiate advance care planning in patients with advanced cancer, physicians should identify patients with limited life expectancy. We aimed to identify predictors of mortality. To identify the relevant literature, we searched Embase, MEDLINE, Cochrane Central, Web of Science, and PubMed databases between January 2000-April 2020. Identified studies were assessed on risk-of-bias with a modified QUIPS tool. The main outcomes were predictors and prediction models of mortality within a period of 3-24 months. We included predictors that were studied in ≥2 cancer types in a meta-analysis using a fixed or random-effects model and summarized the discriminative ability of models. We included 68 studies (ranging from 42 to 66,112 patients), of which 24 were low risk-of-bias, and 39 were included in the meta-analysis. Using a fixed-effects model, the predictors of mortality were: the surprise question, performance status, cognitive impairment, (sub)cutaneous metastases, body mass index, comorbidity, serum albumin, and hemoglobin. Using a random-effects model, predictors were: disease stage IV (hazard ratio [HR] 7.58; 95% confidence interval [CI] 4.00-14.36), lung cancer (HR 2.51; 95% CI 1.24-5.06), ECOG performance status 1+ (HR 2.03; 95% CI 1.44-2.86) and 2+ (HR 4.06; 95% CI 2.36-6.98), age (HR 1.20; 95% CI 1.05-1.38), male sex (HR 1.24; 95% CI 1.14-1.36), and Charlson comorbidity score 3+ (HR 1.60; 95% CI 1.11-2.32). Thirteen studies reported on prediction models consisting of different sets of predictors with mostly moderate discriminative ability. To conclude, we identified reasonably accurate non-tumor specific predictors of mortality. Those predictors could guide in developing a more accurate prediction model and in selecting patients for advance care planning.

Keywords: advance care planning; advanced cancer; mortality; predictors.

Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results. The corresponding author had full access to all the data in the study and had final responsibility for the decision to submit for publication.

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. 2022 Mar;36(3):462-477.
doi: 10.1177/02692163211068282. Epub 2022 Jan 6.

Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review

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Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review

Megumi Kishino et al. Palliat Med. 2022 Mar.

Abstract

Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers.

Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning.

Design: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143).

Data sources: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with 'QualSyst'.

Results: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members' concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members.

Conclusions: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders' perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Keywords: Advance care planning; family; neoplasms; systematic review.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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. 2022 Jun 1;20(6):1537-1544.
doi: 10.11124/JBIES-21-00090.

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

Affiliations

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

Louise Engelbrecht Buur et al. JBI Evid Synth. .

Abstract

Objective: The objective of this scoping review is to investigate and map existing empirical evidence on patient involvement interventions helping patients with end-stage kidney disease to make end-of-life care decisions about kidney services.

Introduction: Patients with end-stage kidney disease have a high disease burden and mortality rate. Despite this, kidney services differ in how they offer and integrate end-of-life care, if it is offered at all. Some countries have established advance care planning protocols to encourage patient involvement when offering end-of-life care options as part of end-stage kidney disease care. However, there is a limited understanding of the components of patient involvement interventions designed to support patients with end-stage kidney disease making decisions about end-of-life care.

Inclusion criteria: The review will consider studies on patient involvement interventions concerning end-of-life care decisions for patients with end-stage kidney disease. A broad definition of patient involvement interventions will be used. Studies on interventions that do not involve patients or relatives will be excluded. The review will focus on interventions applied to kidney health care and other services, such as community-based health care.

Methods: MEDLINE, Embase, Scopus, and CINAHL will be searched. The literature will be screened for inclusion by two independent reviewers. Data synthesis will be conducted through relational analysis investigating patient involvement interventions and relevant information in line with the review objective and questions. Data will be extracted and listed in the data extraction instruments, accompanied by a narrative summary describing how the results relate to the review objective.

Conflict of interest statement

The authors declare no conflict of interest.

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. 2022 Feb;36(2):237-253.
doi: 10.1177/02692163211059340. Epub 2021 Dec 17.

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

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Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

Evelyn Palmer et al. Palliat Med. 2022 Feb.

Abstract

Background: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care.

Aim: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care.

Design: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197).

Data sources: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design.

Results: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life.

Conclusions: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

Keywords: Interstitial lung disease; death; end-of-life care; palliative care; systematic review.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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. 2022 Jan 1;49(1):58-70.
doi: 10.1188/22.ONF.58-70.

Communication About Advance Directives and Advance Care Planning in an East Asian Cultural Context: A Systematic Review

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Communication About Advance Directives and Advance Care Planning in an East Asian Cultural Context: A Systematic Review

Jack K H Pun. Oncol Nurs Forum. .

Abstract

Problem identification: In East Asian cultural contexts, advance directive (AD) and advance care planning (ACP) discussions are generally challenging given patients' unawareness of decision-making rights.

Literature search: Selected databases were searched for articles published from January 2000 to December 2020.

Data evaluation: 21 studies were included and appraised with Critical Appraisal Skills Programme Systematic Review Checklist.

Synthesis: Five themes emerged.

Implications for research: Future research should focus on developing a culturally appropriate AD and ACP communication framework.

Keywords: East Asia; advance care planning; advance directive; communication; culture; review.

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Review
. 2022 Feb;58(2):232-237.
doi: 10.1111/jpc.15851. Epub 2021 Dec 14.

Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions

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Review

Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions

Stuart Ekberg et al. J Paediatr Child Health. 2022 Feb.

Abstract

Aim: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice.

Methods: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness.

Results: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness.

Conclusions: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.

Keywords: delivery of health care; health policy; health services accessibility; paediatrics; palliative care; quality of health care.

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Review
. 2021 Dec 15.
doi: 10.1108/IJPH-02-2021-0017. Online ahead of print.

A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective

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Review

A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective

Lise Johns et al. Int J Prison Health. .

Abstract

Purpose: The purpose of this study is to explore the psychosocial aspects of palliative care provision for incarcerated persons drawing on a human rights perspective.

Design/methodology/approach: Seven databases were searched to identify empirical studies published from 2010 to 2020. Articles included were qualitative, quantitative, mixed methods, written in English and with westernised health/prison settings, with a key focus on the psychosocial aspects of palliative care provision and human rights. The quality of the articles was appraised using the Mixed Methods Assessment Tool (2018).

Findings: The results from 26 articles revealed multiple models of care, with the US prison hospice program depicted as optimal, because of the use of trained incarcerated caregivers, working as aides to the interprofessional team. The bereavement needs of caregivers were highlighted. The barriers to adequate psychosocial care were negative public discourse, prison processes and resources, provider attitudes and the incarcerated person's level of knowledge and trust. Identified facilitators were related to incarcerated persons' caregiving programs, a sense of purpose and visitation leniency. Human rights principles were identified in studies that featured compassionate release and advance care planning.

Research limitations/implications: There is inconsistency in the literature regarding what constitutes psychosocial care, which meant that the authors needed to draw on multiple literature sources to formulate a definition. Additionally, the review only included studies written in English, meaning some high-quality studies could have been missed. The articles that conducted interviews with incarcerated individuals were undertaken in male prisons only and not female prisons.

Practical implications: Understanding the importance of psychosocial care for incarcerated persons with a life-limiting illness requires a shift in negative public discourse and the need for a stronger human rights focus. Some countries, such as the USA and UK, are achieving effective outcomes; however, countries such as Australia are yet to contribute to this knowledge base.

Originality/value: If palliative care is a human right, then its philosophy should be considered in its entirety, with the inclusion of psychosocial care.

Keywords: End-of-life; Human rights; Incarceration; Palliative care; Prisons; Psychosocial; Terminally ill.

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Review
. 2022 Mar;25(3):488-505.
doi: 10.1089/jpm.2021.0308. Epub 2021 Nov 30.

A Scoping Review of Palliative Care for Adults with Huntington's Disease: Current Practice and Future Directions

Affiliations
Review

A Scoping Review of Palliative Care for Adults with Huntington's Disease: Current Practice and Future Directions

Maie El-Sourady et al. J Palliat Med. 2022 Mar.

Abstract

Context: Huntington's disease (HD) is a neurodegenerative disorder characterized by mid-life onset, cognitive decline, and behavioral disturbance. Objective: We conducted a review of the end-of-life (EOL) experience of HD patients and their families. Methods: We searched 5 electronic databases. Eligible studies were published in English and contained outcomes related to PC, end-of-life (EOL), advance directives (ADs), symptom management, or hospice use for HD adults. Results: We screened 1566 studies, assessed 244 studies, and included 27 studies. Symptom Prevalence: Decedent data showed greater likelihood of pneumonia, choking, nutritional deficiencies, and skin ulcers. HD patients in hospice experienced pain, anxiety, nausea, and dyspnea. Psychiatric symptoms included dysphoria, agitation, irritability, apathy, and anxiety. Psychosis is associated with worse cognition, function, and behavioral disturbance. Symptom Management: Electroconvulsive therapy (ECT) and venlafaxine improved depression. Suicidal ideation improved with talking, self-management, medication, and discussing EOL wishes. Tetrabenazine improved chorea. Experience as Illness Progressed: HD patients require home care within two years of diagnosis. Only one study reported use of palliative care services (4%). HD patients are admitted to the hospital late in disease course and are often discharged to long-term care facilities (LTCF). Advance Care Planning: Two studies created tools to navigate EOL decisions. Most HD patients had EOL wishes; only familiarity with HD predicted having EOL wishes. Few had ADs or discussed EOL wishes with their families. Clinicians drive EOL discussions. Views on physician-assisted death (PAD) and euthanasia varied widely. Conclusions: Research is needed to further assess the PC needs of HD patients and to provide care recommendations.

Keywords: Huntington's disease; advance directives; end-of-life care; hospice; palliative care; symptom management.

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. 2021 Sep 15;8(6):628-638.
doi: 10.4103/apjon.apjon-2137. eCollection 2021 Nov-Dec.

Definition and Recommended Cultural Considerations for Advance Care Planning in Japan: A Systematic Review

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Review

Definition and Recommended Cultural Considerations for Advance Care Planning in Japan: A Systematic Review

Ai Chikada et al. Asia Pac J Oncol Nurs. .

Abstract

Although Delphi studies in Western countries have provided a consensus for practices pertaining to advance care planning (ACP), their findings may not be applicable to Asian countries with distinct, family-oriented cultures. This systematic review aimed to synthesize the definitions of and evidence for ACP and analyze recommended practices in Japan. We conducted a systematic review using narrative synthesis in December 2018. Key words were searched from Ichushi-Web by NPO Japan Medical Abstracts Society, Citation Information by the National Institute of Informatics, and Japanese Institutional Repositories Online databases. In addition, in August 2019, we conducted hand searching using Google Scholar and Google. We included original Japanese articles that addressed factors regarding ACP (e.g. definitions, elements, roles and tasks, and timing of ACP). Data were synthesized using thematic analysis. The study protocol was registered prospectively (PROSPERO: CRD42020152391). Of the 3,512 studies screened, 27 were included: 22 quantitative and 5 qualitative. Five-position statements/guidelines were added by hand searching. Definitions and several distinct practice patterns of ACP and the importance of families' roles were identified. Unique recommendations addressed the importance of properly eliciting patients' preferences that are the best for both patients and families, engaging the public to raise awareness of ACP, and developing policies and guidelines for ACP. We identified the definition of and unique recommendations for ACP based on Japanese cultural values and norms. Further research is needed to evaluate the recommendations provided in this systematic review.

Keywords: Advance care planning; advance directives; culturally competent care; end-of-life care; systematic review.

Conflict of interest statement

There are no conflicts of interest.

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Published Erratum
. 2021 Dec 1;23(6):511.
doi: 10.1097/NJH.0000000000000814.

Advance Directives for Adolescents and Young Adults Living with Neuromuscular Disease: An Integrative Review of the Literature: Erratum

No authors listed
Published Erratum

Advance Directives for Adolescents and Young Adults Living with Neuromuscular Disease: An Integrative Review of the Literature: Erratum

No authors listed. J Hosp Palliat Nurs. .
No abstract available

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. 2021 Oct 27:bmjspcare-2021-003300.
doi: 10.1136/bmjspcare-2021-003300. Online ahead of print.

Patient card games in palliative care: integrative review

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Patient card games in palliative care: integrative review

Carla Silvia Fernandes et al. BMJ Support Palliat Care. .

Abstract

Background: In the context of palliative care, a new approach has been documented that allows for sensitive end-of-life conversations to be established through a game of cards.

Objective: This study aimed to identify the use of card games with patients in palliative care, assess self-reported satisfaction and synthesise findings on the effectiveness of its application.

Design: We performed an integrative review study. The studies were collected from five databases, with no time limit until February 2021: Medical Literature Analysis and Retrieval System Online, Cumulative Index to Nursing and Allied Health Literature, Psychology and Behavioral Sciences Collection, SCOPUS and Scientific Electronic Library Online. The inclusion criteria were studies describing the use of card games in adult patients undergoing palliative care, in which the authors performed some type of evaluation. The methodological evaluation of the studies was carried out using the different standardised assessment tools from the Joanna Brigg's Institute.

Results: Of the 685 articles identified, 9 met the inclusion criteria. Regarding methodological aspects, 4 studies were quantitative, 4 mixed-method methodologies, and 1 was qualitative. Card games have been in use for the last decade. The use of card games not only allows for participation in the game without any inhibitions and with a high degree of satisfaction, but also allows for the discussion of sensitive topics related to the end of life, motivating participants to engage in advanced care planning behaviours.

Conclusion: Our findings suggest that using a card game to facilitate conversations with patients in palliative care is a useful and effective approach to discussing uncomfortable topics of death, dying and end-of-life care.

Keywords: clinical assessment; communication; end of life care; terminal care.

Conflict of interest statement

Competing interests: None declared.

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. 2021 Oct 19:bmjspcare-2021-003193.
doi: 10.1136/bmjspcare-2021-003193. Online ahead of print.

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

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Free article
Review

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

Sophie Gloeckler et al. BMJ Support Palliat Care. .
Free article

Abstract

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.

Keywords: clinical decisions; communication; end of life care; ethics; methodological research; quality of life.

Conflict of interest statement

Competing interests: None declared.

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. 2021 Dec;47(12):1415-1425.
doi: 10.1007/s00134-021-06544-6. Epub 2021 Oct 15.

Palliative care interventions in intensive care unit patients

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Palliative care interventions in intensive care unit patients

Victoria Metaxa et al. Intensive Care Med. 2021 Dec.

Erratum in

Abstract

Purpose: The integration of palliative care into intensive care units (ICUs) is advocated to mitigate physical and psychological burdens for patients and their families, and to improve end-of-life care. The most efficacious palliative care interventions, the optimal model of their delivery and the most appropriate outcome measures in ICU are not clear.

Methods: We conducted a systematic review of randomised clinical trials and observational studies to evaluate the number and types of palliative care interventions implemented within the ICU setting, to assess their impact on ICU practice and to evaluate differences in palliative care approaches across different countries.

Results: Fifty-eight full articles were identified, including 9 randomised trials and 49 cohort studies; all but 4 were conducted within North America. Interventions were categorised into five themes: communication (14, 24.6%), ethics consultations (5, 8.8%), educational (18, 31.6%), involvement of a palliative care team (28, 49.1%) and advance care planning or goals-of-care discussions (7, 12.3%). Thirty studies (51.7%) proposed an integrative model, whilst 28 (48.3%) reported a consultative one. The most frequently reported outcomes were ICU or hospital length of stay (33/55, 60%), limitation of life-sustaining treatment decisions (22/55, 40%) and mortality (15/55, 27.2%). Quantitative assessment of pooled data was not performed due to heterogeneity in interventions and outcomes between studies.

Conclusion: Beneficial effects on the most common outcomes were associated with strategies to enhance palliative care involvement, either with an integrative or a consultative approach. Few studies reported functional outcomes for ICU patients. Almost all studies were from North America, limiting the generalisability to other healthcare systems.

Keywords: Critical care; End-of-life care; Palliative care.

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. 2022 Jan-Feb;70(1):96-118.
doi: 10.1016/j.outlook.2021.08.002. Epub 2021 Oct 6.

A scoping review of nurse-led advance care planning

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Review

A scoping review of nurse-led advance care planning

Phyllis Whitehead et al. Nurs Outlook. 2022 Jan-Feb.

Abstract

Background: Advance care planning (ACP) supports persons at any age or health status to determine their values, goals, and preferences regarding future medical care. The American Nurses Association endorses nurses to facilitate ACP to promote patient- and family-centered care.

Purpose: This project reviewed and synthesized literature on nurse-led ACP training models.

Methods: A scoping review used the Arksey and O'Malley Framework to identify: (a) ACP training model type, (b) nurse-led ACP recipients, (c) ACP in special populations, (d) ACP outcomes.

Findings: Of 33 articles reviewed, 19 included 11 established models; however, the primary finding was lack of a clearly identified evidence-based nurse-led ACP training model.

Discussion: Nurses are integral team members, well positioned to be a bridge of communication between patients and care providers. This is a call to action for nurse leaders, researchers, educators to collaborate to identify and implement an evidence-based, effective nurse-led ACP training model.

Keywords: Advance care planning (ACP); Education; Models; Nurse; Program; Training.

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Review
. 2021 Oct 5;12(e3):e441-e450.
doi: 10.1136/bmjspcare-2021-003310. Online ahead of print.

Complex advance care planning interventions for chronic serious illness: how do they work: a scoping review

Affiliations
Review

Complex advance care planning interventions for chronic serious illness: how do they work: a scoping review

Julie Stevens et al. BMJ Support Palliat Care. .

Abstract

Context: Advance care planning (ACP) interventions have the potential to improve outcomes for patients with chronic serious illness. Yet the rationale for outcome choices and the mechanisms by which outcomes are achieved are not always clear.

Objectives: To identify and map proposed mechanisms on how complex ACP interventions can impact outcomes for patients with chronic serious illness and to explore factors that might explain intervention outcomes.

Methods: This is a scoping review of randomised controlled trials of complex ACP interventions for patients with chronic serious illness which explicitly stated the mechanism(s) by which the intervention was thought to work. We searched six databases and hand-searched key journals and reference lists.

Results: Inclusion yielded 16 articles. Inclusion procedures and mapping of mechanisms and outcomes indicated that causality between components and outcomes was not always clearly described. Tailoring intervention content to patients' needs was linked to the greatest number of different outcome categories, while promoting competence and confidence to engage in ACP was most often explicitly linked to a primary outcome. Three main factors which might have affected intended outcomes were identified: participant characteristics, such as illness experience or cultural differences; the setting of implementation; or methodological limitations of the study.

Conclusion: Findings highlighted two main points of consideration for future ACP intervention studies: the need for clearly stated logic in how interventions are expected to impact primary outcomes and the importance of considering how an intervention may function for patients with chronic serious illnesses within a specific setting.

Conflict of interest statement

Competing interests: None declared.

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. 2021 Dec;69(12):3661-3674.
doi: 10.1111/jgs.17447. Epub 2021 Sep 22.

The influence of POLST on treatment intensity at the end of life: A systematic review

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The influence of POLST on treatment intensity at the end of life: A systematic review

Kelly C Vranas et al. J Am Geriatr Soc. 2021 Dec.

Abstract

Background: Despite its widespread implementation, it is unclear whether Physician Orders for Life-Sustaining Treatment (POLST) are safe and improve the delivery of care that patients desire. We sought to systematically review the influence of POLST on treatment intensity among patients with serious illness and/or frailty.

Methods: We performed a systematic review of POLST and similar programs using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, Cochrane Database for Systematic Reviews, and PsycINFO, from inception through February 28, 2020. We included adults with serious illness and/or frailty with life expectancy <1 year. Primary outcomes included place of death and receipt of high-intensity treatment (i.e., hospitalization in the last 30- and 90-days of life, ICU admission in the last 30-days of life, and number of care setting transitions in last week of life).

Results: Among 104,554 patients across 20 observational studies, 27,090 had POLST. No randomized controlled trials were identified. The mean age of POLST users was 78.7 years, 55.3% were female, and 93.0% were white. The majority of POLST users (55.3%) had orders for comfort measures only. Most studies showed that, compared to full treatment orders on POLST, treatment limitations were associated with decreased in-hospital death and receipt of high-intensity treatment, particularly in pre-hospital settings. However, in the acute care setting, a sizable number of patients likely received POLST-discordant care. The overall strength of evidence was moderate based on eight retrospective cohort studies of good quality that showed a consistent, similar direction of outcomes with moderate-to-large effect sizes.

Conclusion: We found moderate strength of evidence that treatment limitations on POLST may reduce treatment intensity among patients with serious illness. However, the evidence base is limited and demonstrates potential unintended consequences of POLST. We identify several important knowledge gaps that should be addressed to help maximize benefits and minimize risks of POLST.

Keywords: Physician Orders for Life-Sustaining Treatment (POLST); end of life care; systematic review; treatment intensity.

Conflict of interest statement

Conflicts of Interest: All authors declare that they do not have any conflicts of interest.

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Review
. 2021 Oct;18(5):254-263.
doi: 10.1111/wvn.12530. Epub 2021 Sep 10.

Barriers to Advance Care Planning Implementation in Health care: An Umbrella Review with Implications for Evidence-Based Practice

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Review

Barriers to Advance Care Planning Implementation in Health care: An Umbrella Review with Implications for Evidence-Based Practice

Silvia Poveda-Moral et al. Worldviews Evid Based Nurs. 2021 Oct.

Abstract

Background: Advance care planning (ACP) refers to a process of discussions between professionals, patients, and their families, which allows the patient to define and communicate their care and treatment preferences. Understanding the barriers to advance care planning is the first step on the way to overcoming them and to improving person-centred care and attention.

Aims: To identify the barriers perceived by professionals, patients, and family members when implementing ACP in a clinical context and to analyse the methodological quality of the evidence.

Methods: An umbrella review guided by the Joanna Briggs Institute and a systematic review in accordance with PRISMA 2015 were utilized. Data were obtained from MEDLINE, Cochrane Library, The Joanna Briggs Institute, CINAHL, Scopus, and EMBASE in November 2018.

Results: Fourteen systematic reviews were included. The main barriers reported by professionals were lack of knowledge and skills to carry out ACP, a certain fear of starting conversations about ACP, and a lack of time for discussions. Patients and family members considered that the main barriers were fear of discussing their relative's end of life, lack of ability to carry out ACP, and not knowing who was responsible for initiating conversations about ACP.

Linking evidence to action: This review has examined the barriers presented by health professionals, patients, and family members, so that future lines of research can develop preventive or decisive measures that encourage the implementation of ACP in health care.

Keywords: advance care planning; advance directives; barriers; umbrella review.

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Review
. 2022 May;105(5):1138-1151.
doi: 10.1016/j.pec.2021.08.016. Epub 2021 Aug 27.

Goals of care communication and higher-value care for patients with advanced-stage cancer: A systematic review of the evidence

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Review

Goals of care communication and higher-value care for patients with advanced-stage cancer: A systematic review of the evidence

Larry D Cripe et al. Patient Educ Couns. 2022 May.

Abstract

Context: Goals-of-care communication (GOCC) is recommended to increase the value of cancer care near the end of life (EOL).

Objectives: Conduct a systematic review of the evidence that GOCC is associated with higher-value care.

Methods: We searched PubMed, Scopus, Ovid MEDLINE, EMBASE, EMB Reviews, CINAHL, and PsycInfo from inception to July 2019. We analyzed the population,design, and results and the authors' definitions of GOCC. Risk of bias was assessed.

Results: Thirty-two articles were selected. Ten articles reported results from 8 interventions; 17 characterized participants' perspectives; and 5 were retrospective The topics, behaviors, timing, and anticipated outcomes of GOCC varied significantly and were indistinguishable from practices such as advance care planning. GOCC typically focused on treatment outcomes rather than patients' goals. Four of 5 interventions increased evidence of GOCC after clinician training. Only one reported improved patient outcomes.

Conclusion: No consensus exists about what GOCC entails. There is limited evidence that GOCC increases the value of EOL care.

Practice implications: Future studies should focus on how to engage patients in conversations about their personal goals and integrate their goals into care planning. Clinicians can encourage GOCC by explaining how patients' goals influence decisions especially as treatment options become limited.

Keywords: Cancer patients; Care goals; Communication; Communication behaviors; End of life; Goal-related communication; Goals of care; Physician-patient communication; Physician-patient concordance; Quality of care; Quality of life.

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. 2021 Dec;35(10):1776-1792.
doi: 10.1177/02692163211042530. Epub 2021 Sep 6.

Asian patients' perspectives on advance care planning: A mixed-method systematic review and conceptual framework

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Asian patients' perspectives on advance care planning: A mixed-method systematic review and conceptual framework

Diah Martina et al. Palliat Med. 2021 Dec.

Abstract

Background: Asian healthcare professionals hold that patients' families play an essential role in advance care planning.

Aim: To systematically synthesize evidence regarding Asian patients' perspectives on advance care planning and their underlying motives.

Design: Mixed-method systematic review and the development of a conceptual framework (PROSPERO: CRD42018099980).

Data sources: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for studies published until July 27, 2020. We included studies concerning seriously-ill Asian patients' perspectives on advance care planning or their underlying motives for engaging or not engaging in it.

Results: Thirty-six articles were included; 22 were quantitative and 27 were from high-income countries. Thirty-nine to ninety percent of Asian patients were willing to engage in advance care planning. Our framework highlighted that this willingness was influenced not only by their knowledge of their disease and of advance care planning, but also by their beliefs regarding: (1) its consequences; (2) whether its concept was in accordance with their faith and their families' or physicians' wishes; and (3) the presence of its barriers. Essential considerations of patients' engagement were their preferences: (1) for being actively engaged or, alternatively, for delegating autonomy to others; (2) the timing, and (3) whether or not the conversations would be documented.

Conclusion: The essential first step to engaging patients in advance care planning is to educate them on it and on their diseases. Asian patients' various beliefs about advance care planning should be accommodated, especially their preferences regarding their role in it, its timing, and its documentation.

Keywords: Asian continental ancestry group; attitude; critical illness; mixed design; patient preference; systematic review.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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. 2021 Sep 1;24(3):144-153.
doi: 10.14475/jhpc.2021.24.3.144.

The Effects of Advance Care Planning on Decision Conflict and Psychological Distress: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

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The Effects of Advance Care Planning on Decision Conflict and Psychological Distress: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

Young-Ran Yeun. J Hosp Palliat Care. .

Abstract

Purpose: Advance care planning (ACP) is widely understood to improve end-of-life care. This systematic review and meta-analysis aimed to examine the effects of ACP interventions on decision conflict and psychological distress.

Methods: A search of PubMed, CINAHL, CENTRAL, EMBASE, KISS, KoreaMed, and RISS was conducted in November 2020. The study included randomized controlled trials. Data were pooled using fixed- and random-effects models.

Results: Fourteen studies were identified that cumulatively included 1,548 participants. ACP interventions were effective in alleviating decision conflict (d=-0.53; 95% CI -0.83 to -0.23), depression (d=-1.22; 95% CI -1.71 to -0.74) and anxiety (d=-0.76; 95% CI -1.12 to -0.39).

Conclusion: ACP interventions have significant positive effects on reducing decision conflict and psychological distress. A high level of bias was shown related to allocation concealment and blinding. The results of this study are expected to be useful for end-of-life care providers to improve the effectiveness of ACP interventions.

Keywords: Advance care planning; Hospice care; Psychological conflict; Psychological distress.

Conflict of interest statement

CONFLICT OF INTEREST No potential conflict of interest relevant to this article was reported.

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. 2022 Aug;20(4):593-599.
doi: 10.1017/S1478951521001152.

A review of clinical trials of advance care planning interventions adapted for limited health literacy

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Review

A review of clinical trials of advance care planning interventions adapted for limited health literacy

Mary Clare K Houlihan et al. Palliat Support Care. 2022 Aug.

Abstract

Objectives: Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies.

Methods: This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool.

Results: The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses.

Significance of results: More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients' health literacy levels to address their advance care planning needs.

Keywords: Advance care planning; Critical appraisal; Health literacy; Randomized controlled trials; Review.

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. 2021 Aug 4:12:683197.
doi: 10.3389/fneur.2021.683197. eCollection 2021.

Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence

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Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence

Shelagh K Genuis et al. Front Neurol. .

Abstract

Background: Communication about end of life, including advance care planning, life-sustaining therapies, palliative care, and end-of-life options, is critical for the clinical management of amyotrophic lateral sclerosis patients. The empirical evidence base for this communication has not been systematically examined. Objective: To support evidence-based communication guidance by (1) analyzing the scope and nature of research on health communication about end of life for amyotrophic lateral sclerosis; and (2) summarizing resultant recommendations. Methods: A scoping review of empirical literature was conducted following recommended practices. Fifteen health-related and three legal databases were searched; 296 articles were screened for inclusion/exclusion criteria; and quantitative data extraction and analysis was conducted on 211 articles with qualitative analysis on a subset of 110 articles that focused primarily on health communication. Analyses summarized article characteristics, themes, and recommendations. Results: Analysis indicated a multidisciplinary but limited evidence base. Most reviewed articles addressed end-of-life communication as a peripheral focus of investigation. Generic communication skills are important; however, substantive and sufficient disease-related information, including symptom management and assistive devices, is critical to discussions about end of life. Few articles discussed communication about specific end-of-life options. Communication recommendations in analyzed articles draw attention to communication processes, style and content but lack the systematized guidance needed for clinical practice. Conclusions: This review of primary research articles highlights the limited evidence-base and consequent need for systematic, empirical investigation to inform effective communication about end of life for those with amyotrophic lateral sclerosis. This will provide a foundation for actionable, evidence-based communication guidelines about end of life. Implications for research, policy, and practice are discussed.

Keywords: advance care planning; amyotrophic lateral sclerosis; health communication; palliative care; review; terminal care.

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature

Vanessa Battista et al. J Hosp Palliat Nurs. .

Erratum in

Abstract

The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced health outcomes, yet it is not routinely offered to adolescents/young adults living with neuromuscular disease. An integrative review of the literature was conducted to examine the evidence related to the use of advance directives with adolescents/young adults living with neuromuscular disease and to identify reasons why they are not being used and how this can be improved. Three-hundred-seven studies were retrieved from PubMed, CINAHL, and EMBASE. Five studies met the final inclusion search criteria and were included in the analysis. Four themes emerged from the literature: conversations about advance directives with adolescents/young adults with neuromuscular disease are not being conducted, only a small number of patients have documented advance directives, patients want to have conversations about goals of care and want to have them sooner, and there is a lack of evidence in this area. These findings may influence neuromuscular clinicians' practice surrounding the use of advance directives and increase their knowledge regarding the need for discussions regarding goals of care.

Conflict of interest statement

The authors have no conflicts of interest to disclose.

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