Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

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Definition and recommendations for advance care planning : an international consensus supported by the European Association for Palliative Care

https://dr.ntu.edu.sg/bitstream/10356/87181/1/PIIS0885392418302835.pdf

Overview of Systematic Reviews of Advance Care Planning: Summary of Evidence and Global Lessons.

BACKGROUND/OBJECTIVES Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes. DESIGN Scoping review. MEASUREMENTS We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive. RESULTS Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (≥18 to ≥80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed. CONCLUSION ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

https://digitalcommons.wustl.edu/cgi/viewcontent.cgi?article=8878&context=open_access_pubs

Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines

https://www.jpsmjournal.com/article/S0885-3924(18)30468-8/pdf

A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition

Objective Advance care planning (ACP) can result in end-of-life care that is more congruent with patients’ values and preferences. There is increasing interest in video decision aids to assist with ACP. The objective of this study was to evaluate the impact of video decision aids on patients’ preferences regarding life-sustaining treatments (primary outcome). Design Systematic review and meta-analysis of randomised controlled trials. Data sources MEDLINE, EMBASE, PsycInfo, CINAHL, AMED and CENTRAL, between 1980 and February 2014, and correspondence with authors. Eligibility criteria for selecting studies Randomised controlled trials of adult patients that compared a video decision aid to a non-video-based intervention to assist with choices about use of life-sustaining treatments and reported at least one ACP-related outcome. Data extraction Reviewers worked independently and in pairs to screen potentially eligible articles, and to extract data regarding risk of bias, population, intervention, comparator and outcomes. Reviewers assessed quality of evidence (confidence in effect estimates) for each outcome using the Grading of Recommendations Assessment, Development and Evaluation framework. Results 10 trials enrolling 2220 patients were included. Low-quality evidence suggests that patients who use a video decision aid are less likely to indicate a preference for cardiopulmonary resuscitation (pooled risk ratio, 0.50 (95% CI 0.27 to 0.95); I 2 =65%). Moderate-quality evidence suggests that video decision aids result in greater knowledge related to ACP (standardised mean difference, 0.58 (95% CI 0.38 to 0.77); I 2 =0%). No study reported on the congruence of end-of-life treatments with patients’ wishes. No study evaluated the effect of video decision aids when integrated into clinical care. Conclusions Video decision aids may improve some ACP-related outcomes. Before recommending their use in clinical practice, more evidence is needed to confirm these findings and to evaluate the impact of video decision aids when integrated into patient care.

https://bmjopen.bmj.com/content/bmjopen/5/6/e007491.full.pdf

Video decision aids to assist with advance care planning: a systematic review and meta-analysis.

Context Assessment for and of learning in workplace settings is at the heart of competency-based medical education. In postgraduate medical education (PGME), entrustable professional activities (EPAs) and entrustment scales are increasingly used to assess competence. However, the educational impacts of these assessment approaches remain unknown. Therefore, this study aimed to explore trainee perceptions regarding the impacts of EPAs and entrustment scales on feedback and learning processes in the clinical setting. Methods Four focus groups were conducted with postgraduate trainees in anaesthesia, emergency medicine, general internal medicine and nephrology at McMaster University in Hamilton, Ontario, Canada. Data collection and analysis were informed by principles of constructivist grounded theory. Results Entrustable professional activities representing well-defined tasks are perceived as potentially effective drivers for feedback and learning. Use of EPAs and entrustment scales, however, may augment existing tensions between developmental (for learning) and decision-making (of learning) assessment functions. Three key dilemmas seem to influence the impact of EPA-based assessment approaches on residents' learning: (a) standardisation of outcomes versus flexibility in assessment to align with individual learning experiences; (b) assessment tasks focusing on performance standards versus opportunities for learning, and (c) feedback focusing on numeric entrustment scores versus narrative and dialogue. Use of entrustment as an assessment outcome may impact trainees' motivation and feelings of self-efficacy, further enhancing tensions between learning and performance. Conclusions Entrustable professional activities and entrustment scales may support assessment for learning in PGME. However, their successful implementation requires the careful management of dilemmas that arise in EPA-based assessment in order to support competence development.

The impact of entrustment assessments on feedback and learning: Trainee perspectives

Background Pandemic-related restrictions are expected to continue to shape end-of-life care and impact the experiences of dying hospitalised patients and their families. Objective To understand families’ experiences of loss and bereavement during and after the death of their loved one amidst the SARS-CoV-2 (COVID-19) pandemic. Design Qualitative descriptive study. Setting Three acute care units in a Canadian tertiary care hospital. Participants Family members of 28 hospitalised patients who died from March–July 2020. Main outcome measures Qualitative semistructured interviews conducted 6–16 months after patient death inquired about family experiences before and beyond the death of their loved one and garnered suggestions to improve end-of-life care. Results Pandemic restrictions had consequences for families of dying hospitalised patients. Most family members described an attitude of acquiescence, some framing their experience as a sacrifice made for the public good. Families appreciated how clinicians engendered trust in the name of social solidarity while trying to mitigate the negative impact of family separation. However, fears about the patient’s experience of isolation and changes to postmortem rituals also created despair and contributed to long-lasting grief. Conclusion Profound loss and enduring grief were described by family members whose final connections to their loved one were constrained by pandemic circumstances. Families observed solidarity among clinical staff and experienced a sense of unity with staff, which alleviated some distress. Their suggestions to improve end-of-life care given pandemic restrictions included frequent, flexible communication, exceptions for family presence when safe, and targeted efforts to connect patients whose isolation is intensified by functional impairment or limited technological access. Trial registration number NCT04602520; Results.

/pdf/sacrifice-and-solidarity-a-qualitative-study-of-family-r00lxl1d.pdf

Sacrifice and solidarity: a qualitative study of family experiences of death and bereavement in critical care settings during the pandemic

Background: Choosing Wisely Canada is a campaign that fosters conversations between physicians and patients about high-value health care. However, little is known about physicians’ readiness to have these conversations. Our objective was to determine how ready practising internists were to embrace and openly address high-value care during conversations with patients or their families. Methods: Practising internists in hospitals affiliated with McMaster University, Hamilton, Ontario, were invited to complete an electronic survey with 3 clinical scenarios: each had 3 low-value interventions that had been requested by the patient or family member. For each request, participants chose 1 of 3 statements reflecting how they would respond: a low-value statement agreeing to provide the intervention, an implicit high-value statement declining to provide the intervention without mentioning value or an explicit high-value statement declining to provide the intervention with mention of value. Results: Forty-four of 62 eligible physicians (71.0% response rate) participated in the survey. High-value statements were selected in 91% of cases. The implicit high-value statement was chosen more often than the explicit high-value statement (65.7% v. 25.5% of all responses, respectively; χ2 range 4.46–56.23, p < 0.05). Interpretation: Physicians favoured high-value care but frequently chose not to explicitly address value in their statements. Physicians seemed ready to embrace high-value health care practice, although they were not ready to openly discuss it with patients and their families.

Readiness of hospital-based internists to embrace and discuss high-value care with patients and family members: a single-centre cross-sectional survey study

BACKGROUND
Infection control protocols, including visitor restrictions, implemented during the COVID-19 pandemic threatened the ability to provide compassionate, family-centered care to patients dying in the hospital. In response, clinicians used videoconferencing technology to facilitate conversations between patients and their families.


OBJECTIVES
To understand clinicians' perspectives on using videoconferencing technology to adapt to pandemic policies when caring for dying patients.


METHODS
A qualitative descriptive study was conducted with 45 clinicians who provided end-of-life care to patients in 3 acute care units at an academically affiliated urban hospital in Canada during the first wave of the pandemic (March 2020-July 2020). A 3-step approach to conventional content analysis was used to code interview transcripts and construct overarching themes.


RESULTS
Clinicians used videoconferencing technology to try to bridge gaps in end-of-life care by facilitating connections with family. Many benefits ensued, but there were also some drawbacks. Despite the opportunity for connection offered by virtual visits, participants noted concerns about equitable access to videoconferencing technology and authenticity of technology-assisted interactions. Participants also offered recommendations for future use of videoconferencing technology both during and beyond the pandemic.


CONCLUSIONS
Clinician experiences can be used to inform policies and practices for using videoconferencing technology to provide high-quality end-of-life care in the future, including during public health crises.

https://aacnjournals.org/ajcconline/article-pdf/31/3/240/142285/240.pdf

Daniel Brandt Vegas

Papers

Video decision aids to assist with advance care planning: a systematic review and meta-analysis.

The impact of entrustment assessments on feedback and learning: Trainee perspectives

Sacrifice and solidarity: a qualitative study of family experiences of death and bereavement in critical care settings during the pandemic

Readiness of hospital-based internists to embrace and discuss high-value care with patients and family members: a single-centre cross-sectional survey study

Use of Video Technology in End-of-Life Care For Hospitalized Patients During The COVID-19 Pandemic.