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Abstract Background Hospitalisation rates for older people are increasing, with end-of-life care becoming a more medicalised experience. Innovative approaches are warranted to support early identification of the end-of-life phase, communicate prognosis, provide care consistent with people’s preferences, and improve the use of healthcare resources. The Intervention for Appropriate Care and Treatment (InterACT) trial aimed to increase appropriate care and treatment decisions for older people at the end of life, through implementation of a prospective feedback loop. This paper reports on the care review outcomes. Methods A stepped-wedge randomised controlled trial was conducted in three large acute hospitals in Queensland, Australia between May 2020 and June 2021. The trial identified older people nearing the end of life using two validated tools for detecting deterioration and short-term death. Admitting clinical teams were provided with details of patients identified as at-risk with the goal of increasing awareness that end of life was approaching to facilitate appropriate patient centred care and avoid non-beneficial treatment. We examined the time between when the patient was identified as ‘at-risk’ and three outcomes: clinician-led care review discussions, review of care directive measures and palliative care referrals. These were considered useful indicators of appropriate care at the end of life. Results In two hospitals there was a reduction in the review of care directive measures during the intervention compared with usual care at 21 days (reduced probability of − 0.08; 95% CI: − 0.12 to − 0.04 and − 0.14; 95% CI: − 0.21 to − 0.06). In one hospital there was a large reduction in clinician-led care review discussions at 21 days during the intervention (reduced probability of − 0.20; 95% CI: − 0.28 to − 0.13). There was little change in palliative care referrals in any hospital, with average probability differences at 21 days of − 0.01, 0.02 and 0.04. Discussion The results are disappointing as an intervention designed to improve care of hospitalised older people appeared to have the opposite effect on care review outcomes. The reasons for this may be a combination of the intervention design and health system challenges due to the pandemic that highlight the complexity of providing more appropriate care at the end of life. Trial registration Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019).

Background: Advance care planning (ACP) has been characterised as a complex process of communication and decision making. For ACP behaviour change, underlying processes such as self-efficacy and readiness are needed. However, studies about which patient characteristics are associated with ACP have mainly focused on whether ACP actions are completed, leaving behaviour change processes unexplored. Aim: To assess whether patients' characteristics and patient-perceived quality of GP ACP communication were associated with patients' ACP engagement. Design and setting: Baseline data were used from the ACP-GP cluster-randomised controlled trial in patients with chronic, life-limiting illness (n = 95). Method: Patients completed questionnaires detailing demographic and clinical characteristics, and their perception about their GPs' ACP information provision and listening. Engagement was measured using the 15-item ACP Engagement Survey, with self-efficacy and readiness subscales. Linear mixed models tested associations with engagement. Results: Demographic and clinical characteristics were not associated with engagement; nor was how much ACP information patients received from their GP or the extent to which the GP listened to what was important for the patient to live well or important to the patient regarding future care. Higher overall ACP engagement (P = 0.002) and self-efficacy (P<0.001) were observed in patients who gave a high rating for the extent to which their GP listened to their worries regarding future health. Conclusion: This study suggests that GPs providing information about ACP alone is not associated with a patient's ACP engagement; an important element is to listen to patients' worries regarding their future health. [ABSTRACT FROM AUTHOR]

Aim: This study evaluated an advanced care planning (ACP) training program incorporating online skills in shared decision making (SDM). Method: The New World Kirkpatrick Model was employed to assess the efficacy of the training program at four levels: reaction, learning, behavior, and results. Reaction measured the participants' satisfaction and difficulty with the training program alongside the status of support received from workplaces engaging in ACP. Learning evaluated the changes in SDM skills. Behavior assessed the changes in the relationship between patients and healthcare professionals when the latter were involved in the SDM process. Results evaluated whether the participants were willing to participate in ACP educational programs as a facilitator and whether their motivation for continuous learning changed through throughout the training program. The relationships among patients, healthcare providers, and third-party roles were analyzed in SDM role-playing via structural equation modeling (SEM). Results: Between September 2020 and June 2022, 145 multidisciplinary participants completed the entirety of the training program. The most common responses to the training were "satisfied", "slightly difficult", and "I received some support from my workplace". The SDM skills significantly improved from the first to the third workshop, evaluated using the Wilcoxon rank-sum test. In the first workshop, SDM was primarily performed by healthcare providers; however, in the third workshop, patient-centered SDM was adopted. Of the participants who completed the program, 63% intended to participate in future ACP educational programs as ACP education facilitators. Conclusion: This study ascertained the validity of this training. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) with life-threatening illnesses want to voice their end-of-life choices. However, these conversations do not happen often. This is in part because of the discomfort that surrounds talking about these issues and because health professionals often have not had enough training in this area. Voicing My CHOiCES is an American booklet which serves as a communication guide to help AYAs have these important discussions with their families and health professionals and document their preferences for care. Our study looked at whether the American guide was suited to young Australians, and what aspects of the guide young people, health professionals, and parents thought caused stress. Overall, participants thought the guide was appropriate and helpful for adolescents and young adults, and they talked about different sources of stress for AYAs attempting to complete it. Our research will inform the adapted Australian Voicing My CHOiCES and support health professionals in how to use this guide to facilitate positive end-of-life outcomes for young people and their families. Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested. [ABSTRACT FROM AUTHOR]

Abstract Background For the benefits of advance care planning to be realised during a hospital admission, the treating team must have accurate knowledge of the law pertaining to implementation of advance care directives (ACDs) and substitute decision making. Aims To determine in a sample of Junior Medical Officers (JMOs): (1) knowledge of the correct order to approach people as substitute decision makers if a patient does not have capacity to consent to treatment; (2) knowledge of the legal validity of ACDs when making healthcare decisions for persons without capacity to consent to treatment, including the characteristics associated with higher knowledge; and (3) barriers to enacting ACDs. Methods A cross-sectional survey was conducted at five public hospitals in New South Wales, Australia. Interns, residents, registrars, and trainees on clinical rotation during the recruitment period were eligible to participate. Consenting participants completed an anonymous pen-and-paper survey. Results A total of 118 JMOs completed a survey (36% return rate). Fifty-five percent of participants were female and 56.8% were aged 20–29 years. Seventy-five percent of JMOs correctly identified a Guardian as the first person to approach if a patient did not have decision-making capacity, and 74% correctly identified a person’s spouse or partner as the next person to approach. Only 16.5% identified all four persons in the correct order, and 13.5% did not identify any in the correct order. The mean number of correct responses to the questions assessing knowledge of the legal validity of ACDs was 2.6 (SD = 1.1) out of a possible score of 6. Only 28 participants (23.7%) correctly answered four or more knowledge statements correctly. None of the explored variables were significantly associated with higher knowledge of the legal validity of ACDs. Uncertainty about the currency of ACDs and uncertainty about the legal implications of relying on an ACD when a patient’s family or substitute decision maker disagree with it were the main barriers to enacting ACDs. Conclusion JMOs knowledge of the legal validity of ACDs for persons without decision making capacity and the substitute decision making hierarchy is limited. There is a clear need for targeted education and training to improve knowledge in this area for this cohort.

Abstract Background General Practitioners (GPs) are central in the care of Dutch older people and in a good position to have Advance Care Planning (ACP) conversations. Interview studies reveal that the doctor-patient relationship is important when initiating ACP conversations and can also be influenced by ACP conversations. We aimed to examine the association between having an ACP conversation and the patient feeling the GP knows him or her and the patient trusting the GP and vice versa. Methods Implementation of ACP in primary care was evaluated in a pre-and post design. Questionnaires before implementation of ACP and 14 months later were sent to patients aged 75 years or older within 10 GP-practices and 2 care homes. Multivariable logistic regression was used to model the relationship between ACP conversations during implementation and the patient-GP relationship before implementation. Odds ratios were adjusted for potential confounders. Generalized ordered logistic regression was used to model the relationship between the changes in patient-GP relationship before and after implementation and ACP conversations during implementation. Results Four hundred fifty-eight patients filled out the pre- and post-test questionnaire. There was no association between the GP knowing the patient and trust in the pre-test and having an ACP conversation during the implementation. For people who had had an ACP conversation at the end of the implementation period their trust remained more often the same or was higher after implementation (trust to provide good care OR 2.93; trust to follow their wishes OR 2.59), compared to patients who did not have an ACP conversation. A reduction in trust was less likely to happen to patients who had an ACP conversation compared to patients who did not have an ACP conversation. Conclusions Although we have not found evidence for trust as a prerequisite for ACP conversations, this paper shows that ACP conversations can be beneficial for the doctor—patient relationship.

This study used a single-group pre-test and post-test design to evaluate an educational workshop for multidisciplinary staff working in long-term care homes on implementing a palliative approach to care and perceptions about advanced care planning conversations. Two outcomes were measured to assess the preliminary efficacy of the educational workshop at baseline and 1-month post-intervention. Knowledge regarding implementing a palliative approach to care was assessed using the End-of-Life Professional Caregivers Survey and changes in staff perception toward ACP conversations were assessed using the Staff Perceptions Survey. Findings suggest that staff experienced an improvement in self-reported knowledge regarding a palliative approach to care (p ≤.001); and perceptions of knowledge, attitude, and comfort related to advance care planning discussions (p ≤.027). The results indicate that educational workshops can assist in improving multidisciplinary staff's knowledge about a palliative approach to care and comfort in carrying out advance care planning discussions with residents, family care partners, and among long-term care staff. [ABSTRACT FROM AUTHOR]

Background: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. Methods: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. Discussion: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science. Trial registration: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23. [ABSTRACT FROM AUTHOR]

Background: Communication and advance care directives may be affected by the presence of dementia. We sought to describe the information and end-of-life preferences provided to nursing homes residents and their families. Methods: Trained nurses collected information from 124 residents randomly selected with palliative care needs from eight nursing homes. Results: A total of 54.4% of the residents with dementia had been provided with information about their state of health, compared to 92.5% of the residents without dementia (p < 0.01); family members exhibited no differences regarding information (p = 0.658), regardless of whether the resident was cognitively impaired. Most advance care interventions remained unexplored, except for cases where a transfer to hospital (81.5%) or serotherapy (69.4%) was desired. Decisions regarding palliative sedation (p = 0.017) and blood transfusion (p = 0.019) were lower among residents with dementia. Conclusions: Residents, especially residents with dementia, are provided with limited information and their preferences are inadequately explored. [ABSTRACT FROM AUTHOR]

Background: Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer's dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is 'Respecting Choices'®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study's aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. Method: We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. Discussion: The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691 [ABSTRACT FROM AUTHOR]

Background: The importance of advance care planning for people with dementia has increased during the Coronavirus Disease 2019 Pandemic. However, family caregivers may have concerns about having conversations regarding advance care planning with their loved ones, which may hinder the initiation of such planning. This study investigated family caregivers’ concerns regarding conducting advance care planning for home-dwelling individuals with dementia. Methods: A prospective cross-sectional study compared the level of family-caregiver concern between those who had initiated advance care planning and those who did not. In June 2021, an internet-based questionnaire survey was administered to Japan-based family caregivers of persons with dementia. Registered members of a Japan-based survey company were recruited; inclusion criteria were being aged 40 years or older and having been a primary, non-professional caregiver of a family member with dementia. Respondents rated their level of agreement with six statements regarding advance-care-planning-related concerns. Respondents also reported their psychological well-being using the WHO-5 Well-Being Index. Results: Overall, 379 family caregivers participated in this survey. Of these, 155 (40.9%) reported that their loved ones had initiated advance care planning, of whom 88 (56.8%) stated that care professionals were involved in the advance-care-planning conversations. The level of family-caregiver concern was significantly lower when the loved one initiated the conversation concerning advance care planning. After adjusting for the characteristics of persons with dementia and their caregivers, family caregivers with lower psychological well-being showed significantly higher levels of concern. Conclusions: Family caregivers reported concerns regarding conducting advance care planning. There is a need for educational and clinical strategies that encourage professionals to address the psychological needs of family caregivers. [ABSTRACT FROM AUTHOR]

Patients with advanced cancer usually suffer from both physical pain and mentally distress. The advance care planning can effectively guarantee the autonomy of patients with advance cancer, improve their quality of life in the terminal stage, and reduce overtreatment and save medical costs. This paper reviewed the research on advance care planning for patients with advanced cancer in China, and provided reference for the further research and clinical practice. (肿瘤晚期患者饱受躯体和精神的双重痛苦, 预立医疗照护计划(ACP)的实施不仅能够有效保障肿瘤患者的自主权, 提高肿瘤患者终末期的生活质量, 还可以减少过度医疗, 从而节约医疗成本。本文就ACP在我国肿瘤晚期患者中应用的研究进展做一综述, 就目前研究趋势进行总结, 以期为ACP在国内肿瘤晚期患者中的应用研究与实践提供借鉴。)

Abstract Background Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient’s values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) – an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. Methods Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. Results The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. Conclusion The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

Abstract Background Better insight in patients’ prognosis can help physicians to timely initiate advance care planning (ACP) discussions with patients with chronic obstructive pulmonary disease (COPD). We aimed to identify predictors of mortality. Methods We systematically searched databases Embase, PubMed, MEDLINE, Web of Science, and Cochrane Central in April 2020. Papers reporting on predictors or prognostic models for mortality at 3 months and up to 24 months were assessed on risk-of-bias. We performed a meta-analysis with a fixed or random-effects model, and evaluated the discriminative ability of multivariable prognostic models. Results We included 42 studies (49–418,251 patients); 18 studies were included in the meta-analysis. Significant predictors of mortality within 3–24 months in the random-effects model were: previous hospitalization for acute exacerbation (hazard ratio [HR] 1.97; 95% confidence interval [CI] 1.32–2.95), hospital readmission within 30 days (HR 5.01; 95% CI 2.16–11.63), cardiovascular comorbidity (HR 1.89; 95% CI 1.25–2.87), age (HR 1.48; 95% CI 1.38–1.59), male sex (HR 1.68; 95% CI 1.38–1.59), and long-term oxygen therapy (HR 1.74; 95% CI 1.10–2.73). Nineteen previously developed multicomponent prognostic models, as examined in 11 studies, mostly had moderate discriminate ability. Conclusion Identified predictors of mortality may aid physicians in selecting COPD patients who may benefit from ACP. However, better discriminative ability of prognostic models or development of a new prognostic model is needed for further large-scale implementation. Registration: PROSPERO (CRD42016038494), https://www.crd.york.ac.uk/prospero/ .

Background: Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience. Aim: To collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families. Methods: Rapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services. Results: 246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare. Conclusions: We present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life. [ABSTRACT FROM AUTHOR]

Background: Up to half of adults with advanced cancer report anxiety or depression symptoms, which can cause avoidance of future planning. We present a study protocol for an innovative, remotely-delivered, acceptance-based, multi-modal palliative care intervention that addresses advance care planning (ACP) and unmet psychological needs commonly experienced by adults with metastatic cancer. Methods: A two-armed, prospective randomized controlled trial (RCT) randomizes 240 adults with Stage IV (and select Stage III) solid tumor cancer who report moderate to high anxiety or depression symptoms to either the multi-modal intervention or usual care. The intervention comprises five weekly two-hour group sessions (plus a booster session one month later) delivered via video conferencing, with online self-paced modules and check-ins completed between the group sessions. Intervention content is based on Acceptance and Commitment Therapy (ACT), an acceptance, mindfulness, and values-based model. Participants are recruited from a network of community cancer care clinics, with group sessions led by the network's oncology clinical social workers. Participants are assessed at baseline, mid-intervention, post-intervention, and 2-month follow-up. The primary outcome is ACP completion; secondary outcomes include anxiety and depression symptoms, fear of dying, and sense of life meaning. Relationships between anxiety/depression symptoms and ACP will be evaluated cross-sectionally and longitudinally and theory-based putative mediators will be examined. Discussion: Among adults with advanced cancer in community oncology settings, this RCT will provide evidence regarding the efficacy of the group ACT intervention on ACP and psychosocial outcomes as well as examine the relationship between ACP and anxiety/ depression symptoms. This trial aims to advance palliative care science and inform clinical practice. Trial Registration: Clinicaltrials.gov NCT04773639 on February 26, 2021. [ABSTRACT FROM AUTHOR]

Background: Patients undergoing high-risk surgery are at a risk of sudden deterioration of their health. This study aimed to examine the feasibility of the development of two patient decision aids (PtDAs) to assist patients undergoing high-risk surgeries in informed decision-making about their medical care in a crisis. Methods: This field testing implemented two PtDAs that met the international criteria developed by the researchers for patients before surgery. Study participants were patients scheduled to be admitted to the intensive care unit after surgery at one acute care hospital in Japan and their families. The study used a mixed-methods approach. The primary outcome was patients' decision satisfaction evaluated by the SURE test. Secondary outcomes were the perception of the need to discuss advance care planning (ACP) before surgery and mental health status. The families were also surveyed on their confidence in proxy decision-making (NRS: 0–10, quantitative data). In addition, interviews were conducted after discharge to assess the acceptability of PtDAs. Data were collected before (preoperative outpatients, baseline: T0) and after providing PtDAs (in the hospital: T1) and following discharge (T2, T3). Results: Nine patients were enrolled, of whom seven agreed to participate (including their families). The SURE test scores (mean ± SD) were 2.1 ± 1.2 (T0), 3.4 ± 0.8 (T2), and 3.9 ± 0.4 (T3). The need to discuss ACP before surgery was 8.7 ± 1.3 (T1) and 9.1 ± 0.9 (T2). The degree of confidence in family surrogate decision-making was 6.1 ± 2.5 (T0), 7.7 ± 1.4 (T1), and 8.1 ± 1.5 (T2). The patients reported that using PtDAs provided an opportunity to share their thoughts with their families and inspired them to start mapping their life plans. Additionally, patients wanted to share and discuss their decision-making process with medical professionals after the surgery. Conclusions: PtDAs supporting ACP in patients undergoing high-risk surgery were developed, evaluated, and accepted. However, they did not involve any discussion of patients' ACP treatment wishes with their families. Medical providers should be coached to provide adequate support to patients. In the future, larger studies evaluating the effectiveness of PtDAs are necessary. [ABSTRACT FROM AUTHOR]

Background: The terminal illness of late-stage (advanced) Alzheimer's and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. While advance directives can be patients' last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding.Aim: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are  implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests "Cease assisted feeding" but the incapacitated patient apparently expresses the desire to "Continue assisted feeding." Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives.Conclusion: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients' wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) and goals of care discussions are important instruments that enable respect for patient autonomy, especially in patients with a life-threatening disease, such as cancer. Despite their well-established benefits, ACP and goals of care discussions are still not frequently performed in clinical oncology practice. Understanding the barriers to this topic is the first step toward developing future interventions that are more likely to improve professional practice and patient satisfaction with care. Aim: To explore Brazilian oncologists' barriers to discuss goals of care and advance care planning. Methods: A cross-sectional study was developed to identify Brazilian oncologists' barriers to discussing goals of care and ACP. The Decide-Oncology questionnaire was used to identify the importance of these barriers according to oncologists' perceptions. Participants were asked to rank the importance of various barriers to discussing goals of care, ranging from 1 (extremely unimportant) to 7 (extremely important). A quantitative analysis using descriptive statistics was used, including median and interquartile intervals and a qualitative analysis based on Bardin content analysis of the two open questions. Results: Sixty-six oncologists participated in this study. Most of them perceived the patient and family's related barriers as the most important, such as patients' difficulty in understanding their diagnosis and accepting their prognosis. Physician and external related factors, such as lack of training and lack of time for this conversation, were also described as important barriers. Participants with formal training regarding goals of care communication and with experience in palliative care perceived the lack of patients' advanced directives as a significant barrier and manifested more willingness to participate in decision-making about goals of care. The lack of access and of support for referral to palliative care was also considered a significant barrier for ACP and goals of care discussion. Conclusion: The identification of barriers that limit the discussion of ACP and early palliative care referrals can certainly help to prioritise the next steps for future studies aimed at improving ACP and helping clinicians to better support patients through shared decision-making based on the patient's values and experiences. [ABSTRACT FROM AUTHOR]

Background: According to recent legislation, facilitated advance care planning (ACP) for nursing home (NH) residents is covered by German sickness funds. However, the effects of ACP on patient-relevant outcomes have not been studied in Germany yet. This study investigates whether implementing a complex regional ACP intervention improves care consistency with care preferences in NH residents.Methods: This is a parallel-group cluster-randomized controlled trial (cRCT) with 48 NHs (≈ 3840 resident beds) between 09/2019 and 02/2023. The intervention group will receive a complex, regional ACP intervention aiming at sustainable systems redesign at all levels (individual, institutional, regional). The intervention comprises comprehensive training of ACP facilitators, implementation of reliable ACP processes, organizational development in the NH and other relevant institutions of the regional healthcare system, and education of health professionals caring for the residents. Control group NHs will deliver care as usual. Primary outcome is the hospitalization rate during the 12-months observation period. Secondary outcomes include the rate of residents whose preferences were known and honored in potentially life-threatening events, hospital days, index treatments like resuscitation and artificial ventilation, advance directives, quality of life, psychological burden on bereaved families, and costs of care. The NHs will provide anonymous, aggregated data of all their residents on the primary outcome and several secondary outcomes (data collection 1). For residents who have given informed consent, we will evaluate care consistency with care preferences and further secondary outcomes, based on chart reviews and short interviews with residents, surrogates, and carers (data collection 2). Process evaluation will aim to explain barriers and facilitators, economic evaluation the cost implications.Discussion: This study has the potential for high-quality evidence on the effects of a complex regional ACP intervention on NH residents, their families and surrogates, NH staff, and health care utilization in Germany. It is the first cRCT investigating a comprehensive regional ACP intervention that aims at improving patient-relevant clinical outcomes, addressing and educating multiple institutions and health care providers, besides qualification of ACP facilitators. Thereby, it can generate evidence on the potential of ACP to effectively promote patient-centered care in the vulnerable population of frail and often chronically ill elderly.Trial Registration: ClinicalTrials.gov ID NCT04333303 . Registered 30 March 2020. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced heart failure may benefit from palliative care, including advance care planning (ACP). ACP, which can include referral back to the general practitioner (GP), may prevent unbeneficial hospital admissions and interventional/surgical procedures that are not in accordance with the patient's personal goals of care. Aim: To implement ACP in patients with advanced heart failure and explore the effect of ACP on healthcare utilisation as well as the satisfaction of patients and cardiologists. Methods: In this pilot study, we enrolled 30 patients with New York Heart Association class III/IV heart failure who had had at least one unplanned hospital admission in the previous year because of heart failure. A structured ACP conversation was held and documented by the treating physician. Primary outcome was the number of visits to the emergency department and/or admissions within 3 months after the ACP conversation. Secondary endpoints were the satisfaction of patients and cardiologists as established by using a five-point Likert scale. Results: Median age of the patients was 81 years (range 33–94). Twenty-seven ACP documents could be analysed (90%). Twenty-one patients (78%) did not want to be readmitted to the hospital and subsequently none of them were readmitted during follow-up. Twenty-two patients (81%) discontinued all hospital care. All patients who died during follow-up (n = 12, 40%) died at home. Most patients and cardiologists indicated that they would recommend the intervention to others (80% and 92% respectively). Conclusion: ACP, and subsequent out-of-hospital care by the GP, was shown to be applicable in the present study of patients with advanced heart failure and evident palliative care needs. Patients and cardiologists were satisfied with this intervention. [ABSTRACT FROM AUTHOR]

Abstract Background Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons’ decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial. Methods This one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives’ knowledge of PWED’s preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers’ reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants’ reasons to participate to the study, satisfaction with the tool and difficulties perceived. Results The ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED’s preferences and relatives’ decision on their behalf, and relatives’ perceived control over healthcare decisions. Conclusion Misconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP. Trial registration This trial was registered in the database clinicaltrial.gov with the number NCT03615027 .

Background: Palliative care (PC) is a strongly emerging discipline worldwide. Despite efforts to integrate this important topic in the medical curriculum in Belgium, still little time is spent on PC and its implementation during theoretical and practical training. Materials & methods: We had two cohorts of second master's year MD students at the University of Antwerp complete a survey compromising a custom-built PC knowledge test and a self-confidence assessment of communicative skills used in end-of-life conversations. We evaluated students' self-confidence regarding end-of-life-conversations before and after a PC training program. We also explored whether the PC classes enabled the students to adequately reflect on factors that might influence end-of-life conversations with an open-end question about the potential implications of the COVID-19 pandemic on advance care planning (ACP) conversations. Finally, we compared the results of the respondents having enjoyed face-to-face training (cohort 1) with those having received online training only (cohort 2, COVID-19 pandemic). Results: Although the respondents in both cohorts indicated that the overall curriculum did not pay enough attention to PC training, their average scores on the theoretical questions were good. Feeling confident about their communicative skills in general, they indicated to be less confident when it came to communications concerning PC and ACP in particular. The COVID-19 pandemic was initially equally deemed to impede and facilitate ACP and end-of-life conversations, but after the ACP training class more respondents saw the pandemic as an opportunity to broach end-of-life issues. Finally, we found no differences in scores between online and regular classroom teaching. Conclusion: Students experience a lack of confidence in communication skills used in end-of-life conversations and ACP. To help improve skills and competencies in conducting end-of-life conversations, it is recommended to have medical students assess PC/ACP training programs regularly and to modify the curriculum and course content based on these outcomes and current developments. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the effectiveness of feedback reports and feedback reports + external facilitation on completion of life‐sustaining treatment (LST) note the template and durable medical orders. This quality improvement program supported the national roll‐out of the Veterans Health Administration (VA) LST Decisions Initiative (LSTDI), which aims to ensure that seriously‐ill veterans have care goals and LST decisions elicited and documented. Data Sources: Primary data from national databases for VA nursing homes (called Community Living Centers [CLCs]) from 2018 to 2020. Study Design: In one project, we distributed monthly feedback reports summarizing LST template completion rates to 12 sites as the sole implementation strategy. In the second involving five sites, we distributed similar feedback reports and provided robust external facilitation, which included coaching, education, and learning collaboratives. For each project, principal component analyses matched intervention to comparison sites, and interrupted time series/segmented regression analyses evaluated the differences in LSTDI template completion rates between intervention and comparison sites. Data Collection Methods: Data were extracted from national databases in addition to interviews and surveys in a mixed‐methods process evaluation. Principal Findings: LSTDI template completion rose from 0% to about 80% throughout the study period in both projects' intervention and comparison CLCs. There were small but statistically significant differences for feedback reports alone (comparison sites performed better, coefficient estimate 3.48, standard error 0.99 for the difference between groups in change in trend) and feedback reports + external facilitation (intervention sites performed better, coefficient estimate −2.38, standard error 0.72). Conclusions: Feedback reports + external facilitation was associated with a small but statistically significant improvement in outcomes compared with comparison sites. The large increases in completion rates are likely due to the well‐planned national roll‐out of the LSTDI. This finding suggests that when dissemination and support for widespread implementation are present and system‐mandated, significant enhancements in the adoption of evidence‐based practices may require more intensive support. [ABSTRACT FROM AUTHOR]

Background: Junior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors' decision-making processes when treating people with dementia who have advance care directives (ACDs), or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: (1) their legal compliance and decision-making process related to treatment decisions; (2) the factors influencing their clinical decision-making; and (3) the factors associated with accurate responses to one hypothetical vignette.Method: A cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: (1) bacterial pneumonia; or (2) suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette.Results: Overall, 116 junior doctors responded (35% consent rate). In Vignette 1, 58% of respondents (n = 67/116) selected the legally compliant option (i.e. not commence treatment). Participants who chose the legally compliant option perceived 'following patient wishes' (n = 32/67; 48%) and 'legal requirements to follow ACDs' (n = 32/67; 48%) as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the 'ACD is relevant in my decision-making process, but other factors are more relevant' (n = 14/37; 38%). In Vignette 2, 72% of respondents (n = 83/116) indicated they would commence treatment (i.e. not follow the ACD) and 18% (n = 21/116) selected they would not commence treatment. (i.e. follow the ACD). Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario.Conclusions: There are critical gaps in junior doctors' compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors' clinical decision-making and ensure compliance with the law is required. [ABSTRACT FROM AUTHOR]

Background: Residents living in long-term care homes (LTCH) have complex care needs, multiple chronic conditions, increasing frailty and cognitive impairment. A palliative approach that incorporates advance care planning (ACP) should be integrated with chronic disease management, yet it is not a norm in most LTCHs. Despite its growing need, there remains a lack of staff engagement in the ACP process. Objectives: The aim of this study was to explore the perceptions and experiences of interdisciplinary staff related to the practice of ACP in LTCHs. Methods: This study is part of a larger Canadian project, iCAN ACP, that aims to increase uptake, and access to ACP for older Canadians living with frailty. An exploratory qualitative design using an interpretive descriptive approach was employed utilizing focus groups and semi-structured interviews with staff from four LTCHs in Ontario, Canada. Findings: There were 98 participants, including nurses (n = 36), physicians (n = 4), personal support workers (n = 34), support staff (n = 23), and a public guardian (n = 1). Three common themes and nine subthemes were derived: a) ongoing nature of ACP; b) complexities around ACP conversations; and c) aspirations for ACP becoming a standard of care in LTCHs. Discussion: The findings of this study provide important contributions to our understanding of the complexities surrounding ACP implementation as a standard of practice in LTCHs. One of the critical findings relates to a lack of ACP conversations prior to admission in the LTCHs, by which time many residents may have already lost cognitive abilities to engage in these discussions. The hierarchical nature of LTCH staffing also serves as a barrier to the interdisciplinary collaboration required for a successful implementation of ACP initiatives. Participants within our study expressed support for ACP communication and the need for open lines of formal and informal interdisciplinary communication. There is a need for revitalizing care in LTCHs through interdisciplinary care practices, clarification of role descriptions, optimized staffing, capacity building of each category of staff and commitment from the LTCH leadership for such care. Conclusion: The findings build on a growing body of research illustrating the need to improve staff engagement in ACP communication in LTCHs. [ABSTRACT FROM AUTHOR]

Background: Modern palliative care focuses on enabling patients to spend their remaining time at home, and dying comfortably at home, for those patients who want it. Compared to many European countries, few die at home in Norway. General practitioners' (GPs') involvement in palliative care may increase patients' time at home and achievements of home death. Norwegian GPs are perceived as missing in this work. The aim of this study is to explore GPs' experiences in palliative care regarding their involvement in this work, how they define their role, and what they think they realistically can contribute towards palliative patients. Methods: We performed focus group interviews with GPs, following a semi-structured interview guide. We included four focus groups with a total of 25 GPs. Interviews were recorded and transcribed verbatim. We performed qualitative analysis on these interviews, inspired by interpretative phenomenological analysis. Results: Strengths of the GP in the provision of palliative care consisted of characteristics of general practice and skills they relied on, such as general medical knowledge, being coordinator of care, and having a personal and longitudinal knowledge of the patient and a family perspective. They generally had positive attitudes but differing views about their formal role, which was described along three positions towards palliative care: the highly involved, the weakly involved, and the uninvolved GP. Conclusion: GPs have evident strengths that could be important in the provision of palliative care. They rely on general medical knowledge and need specialist support. They had no consensus about their role in palliative care. Multiple factors interact in complex ways to determine how the GPs perceive their role and how involved they are in palliative care. GPs may possess skills and knowledge complementary to the specialized skills of palliative care team physicians. Specialized teams with extensive outreach activities should be aware of the potential they have for both enabling and deskilling GPs. [ABSTRACT FROM AUTHOR]

Background: Patients still receive non-beneficial treatments when nearing the end of life. Advance care planning (ACP) interventions have shown to positively influence compliance with end of life wishes. Hospital physicians seem to miss opportunities to engage in ACP, whereas patients visiting the outpatient clinic usually have one or more chronic conditions and are at risk for medical emergencies. So far, implemented ACP interventions have had limited impact. Structural implementation of ACP may be beneficial. We hypothesize that having ACP conversations more towards the end of life and involving the treating physician in the ACP conversation may help patient wishes and goals to become more concrete and more often documented, thus facilitating goal-concordant care. Aim: To facilitate timely shared decision making and increase patient autonomy we aim to develop an ACP intervention at the outpatient clinic for frail patients and determine the feasibility of the intervention. Methods: The United Kingdom's Medical Research Council framework was used to structure the development of the ACP intervention. Key elements of the ACP intervention were determined by reviewing existing literature and an iterative process with stakeholders. The feasibility of the developed intervention was evaluated by a feasibility study of 20 ACP conversations at the geriatrics and pulmonology department of a non-academic hospital. Feasibility was assessed by analysing evaluation forms by patients, nurses and physicians and by evaluating with stakeholders. A general inductive approach was used for analysing comments. The developed intervention was described using the template for intervention description and replication (TIDieR). Results: We developed a multidisciplinary timely undertaken ACP intervention at the outpatient clinic. Key components of the developed intervention consist of 1) timely patient selection 2) preparation of patient and healthcare professional 3) a scripted ACP conversation in a multidisciplinary setting and 4) documentation. 94.7% of the patients, 60.0% of the nurses and 68.8% of the physicians agreed that the benefits of the ACP conversation outweighed the potential burdens. Conclusion: This study showed that the developed ACP intervention is feasible and considered valuable by patients and healthcare professionals. [ABSTRACT FROM AUTHOR]

Deciding whether to stop life-saving treatment for patients receiving intensive care, and who have poor recovery prospects, is challenging. Due to patients' inability to make these decisions and the difficulties in fulfilling their wishes regarding treatment, family members often need to decide themselves. Advance care planning support has been expanding to improve the quality of end-of-life care, but its effectiveness in intensive care units is unclear. This scoping review aimed to elucidate the effectiveness of advance care planning interventions for patients entering intensive care units, and their families. The PRISMA-ScR checklist was used to report this review. We searched the databases of BNI, CINAHL, EMBASE, Ichushi-Web, PsycINFO, PubMed, The Cochrane Library, OpenGrey, and the Trip medical database for published and unpublished studies in intensive care units from January 2000 to March 2020. Studies on adult patients admitted to intensive care units were included, while studies on patients being treated for mental health conditions, terminally ill patients, new mothers, and patients in nursing homes and hospices were excluded. Three quantitative studies and one qualitative study were included in this review. Literature analysis revealed that an advance care planning intervention involving patients in intensive care units in the perioperative period and their families significantly improved their knowledge; documenting the patient's intentions helped reduce decision-making conflicts and enhanced care satisfaction. Barriers to preparing advance care planning included a lack of information and support by healthcare providers. The reviewed studies indicated that medical professionals and families could make surrogate decisions based on patients' wishes and values by supporting advance care planning. [ABSTRACT FROM AUTHOR]