Search

BACKGROUND: Goals of care conversations explore seriously ill patients values to guide medical decision making and often inform decisions about life sustaining treatments. Ideally, conversations occur before a health crisis between patients and clinicians in the outpatient setting. In the United States Veterans Affairs (VA) healthcare system, most conversations still occur in the inpatient setting. Strategies are needed to improve implementation of outpatient, primary care goals of care conversations. METHODS: We plan a cluster randomized (clinician-level) sequential, multiple assignment randomized trial to evaluate the effectiveness of patient implementation strategies on the outcome of goals of care conversation documentation when delivered in combination with clinician implementation strategies. Across three VA healthcare system sites, we will enroll primary care clinicians with low rates of goals of care conversations and their patients with serious medical illness in the top 10th percentile of risk of hospitalization or death. We will compare the effectiveness of sequences of implementation strategies and explore how patient and site factors modify implementation strategy effects. Finally, we will conduct a mixed-methods evaluation to understand implementation strategy success or failure. The design includes two key innovations: (1) strategies that target both clinicians and patients and (2) sequential strategies with increased intensity for non-responders. CONCLUSION: This study aims to determine the effect of different sequences and combinations of implementation strategies on primary care documentation of goals of care conversations. Study partners, including the VA National Center for Ethics in Health Care and Office of Primary Care, can consider policies based on study findings.

Advance care planning (ACP) has evolved from a narrow focus on end-of-life preference, such as resuscitation, to a continuum of care planning across the life course. Older adults with kidney disease have high morbidity and mortality, and easy-to-use tools can make ACP easier for patients and clinicians.

BackgroundEnd-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age.MethodsWe conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACPs evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of clinically meaningful ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACPs continued evolution to better serve patients and their care partners.

A key challenge of implementing advance care planning lies in the fact that decisions made in advance require patients and their family members to imagine what their clinical picture will look like rather than knowing or experiencing the clinical circumstances as they unfold. Even more important is the acknowledgment of the unpredictability of a given clinical course. This type of situation requires adaptiveness and flexibility in decision-making that frequently occurs in the moment(s) triggered by changes in health state(s). We describe an alternative frameshifting approach called Adaptive Care Planning (AdaptCP), which features an evolving communication between physicians and patients/families with ongoing incorporation of the patients/familys perspective. This process continues iteratively until each decision can be reached in a way that is both harmonious with the patients/familys perspective and is consistent with medical treatment options that are actionable for the healthcare team. We include a table of tools drawn from the literature that can help clinicians when implementing AdaptCP.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the persons capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

PURPOSE: Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. METHODS: We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants ACP experiences, and integrated the findings based on mailed materials or group visits intervention. RESULTS: All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P

COVID-19 may cause sudden serious illness, and relatives having to act on patients behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In LexisNexis Uni, we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

Objectives: To explore whether training on the SICG-Peds© (Serious Illness Guide for Pediatrics) impacts a pediatric clinician's confidence and knowledge in participating and initiating/leading difficult conversations with families of children living with a serious illness. Methods: Over 2 years, clinicians from BC and Ontario who care for children with serious illnesses attended training workshops on the SICG-Peds©. These workshops were evaluated using pre- and post-workshop questionnaires. Participants reported confidence scores on a scale of 1 to 10. Results: In total, 134 and 140 clinicians attended the workshops in BC and Ontario, respectively. The majority of clinicians who completed the immediate post-workshop survey (N = 223, 94.5%), responded that the content enhanced their knowledge about pediatric serious illness conversations (SIC). Confidence scores in initiating/leading a SIC significantly increased from median 5 (interquartile range [IQR] 3-7) pre-workshop to 7 (IQR 7-9) immediately post-workshop (P <.0001). Confidence scores in participating as a non-leader in a SIC also significantly increased from median 7 (IQR 6-9) pre-workshop to median 8 (IQR 7-9) immediately post-workshop (P <.0001). Conclusions: Overall, these workshops significantly improved participants' confidence. Effectiveness and knowledge enhancement were other areas where the majority of participants reported positive improvements. Areas for continued support were identified as more mentoring, and training for supporting the guide's use in a clinical setting. [ABSTRACT FROM AUTHOR]

Background: Demographic changes are leading to a rise in the demand for care services, with nursing homes (NHs) playing an increasingly important role in end-of-life care. Evidence suggests that NH residents at the end of life significantly benefit from hospice and palliative care and the implementation of advance care planning (ACP). In 2018, Germany passed a law to promote the implementation of ACP in NHs and to enable the refinancing of ACP services by the statutory health insurance funds. The present study aimed at assessing current hospice and palliative care structures, examining the implementation of ACP and identifying barriers to obtain approval for billing for ACP services under this specific legislative (§ 132 g SGB V). Methods: As a part of the "Gut-Leben" project, the present study administered a cross-sectional quantitative survey in 2023 to evaluate hospice and palliative care structures, the implementation of ACP, and barriers to ACP approval in German NHs. A questionnaire was distributed to a random sample of N = 1,369 NH managers. Responses were analyzed using descriptive statistical methods. Results: N = 330 NH managers responded to the questionnaire (24.1% response). The majority described the end-of-life care structures in their region as rather good (77.7; n = 256), and very strong collaboration was reported with general practitioners (54.7%), physiotherapists (42.9%), and palliative care physicians (38.6%). Awareness of the legislative for ACP was reported by n = 201 NHs (64.4%), and 100 (50.3%) of these NHs had already obtained approval. The primary barriers to approval identified by 68 NHs included a lack of available staff (48.5%; n = 33) and a small facility size (27.9%; n = 19). Conclusions: Although half of the NHs have implemented ACP, there is still a need to enhance awareness of the ACP legislative. These efforts should aim to reduce the existing barriers to approval, which could be achieved, for instance, by fostering collaboration between NHs or by cooperating with external ACP service providers. [ABSTRACT FROM AUTHOR]

Background: Early palliative care interventions in oncology, as recommended by international oncology societies, promote patient understanding and support decision-making. At the same time, shared decision-making models are being developed to enhance patient participation as part of a new model of patient-physician relationship. For patients with palliative needs, this participation is essential and helps to avoid futile and aggressive treatments at the end of life. The aim of this study is to observe decision making during meetings between oncology and palliative care professionals, focusing particularly on the components of shared decision-making models, but also on the role played by palliative care professionals. Methods: We conducted a non-participant observation of multidisciplinary meetings and outpatient clinic activities in two Comprehensive Cancer Centres in France. Field notes were then coded using thematic content analysis. Deductive analysis was conducted using the observation grid developed from Elwyn's three-talk model. Results: Only a few elements of the different models of shared decision-making are apparent in the multidisciplinary meetings. Palliative care professionals emphasise the importance of involving patients and providing them with information about the advantages and disadvantages of different treatment options. However, patient involvement in decision-making remains difficult in daily practice. Decisions to discontinue oncological treatment are often driven by clinical and biological signs of terminal evolution rather than shared decision-making. Conclusions: There are still cultural and organisational barriers to actual implementation of early integrated onco-palliative care. Promotion of shared decision making can be a strong lever of change which is frequently mobilised by palliative care teams. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) in palliative care is essential for patient autonomy and quality of dying. This review explores ACP practices in South Korea, Japan, and Taiwan, highlighting how legislation and cultural values shape those practices. In these three sectors, which are influenced by Confucian values, family involvement plays a significant role in decision-making. In South Korea, the Life-Sustaining Treatment Decisions Act made ACP processes mandatory at all healthcare institutions and rapidly created advance directive registration agencies nationwide, with a national web-based system for legal documentation. The Act's narrow focus on terminal illness and dying phase may inadvertently delay end-of-life discussions. A broader social consensus is needed to allocate end-of-life care resources in a way that reflects patients' and families' wishes. Japan's family-based approach highlights relational autonomy, with ACP timing varying and no formal legal frameworks for advance directives. Expanded palliative care, ACP guidelines, systemic support, and public awareness drive progress in Japan. Taiwan's two relevant legislative frameworks-the Hospice Palliative Care Act and Patient Right to Autonomy Act-expand palliative care services for terminal illnesses and non-cancer diseases such as severe dementia, irreversible coma, and a persistent vegetative state. Misunderstandings of ACP and family-led decision-making may hinder ACP uptake. ACP referral based on patient care needs rather than terminal diagnoses is suggested. Overcoming common barriers in Asia necessitates open dialogues about death and public education. A standardized legal framework and comprehensive training for healthcare providers are equally important. Further international collaboration will suggest culturally sensitive ACP conversations across Asia. [ABSTRACT FROM AUTHOR]

We aimed to measure the sustainability of health professionals' intention to have serious illness conversations with patients using the Serious Illness Conversation Guide (SICG) after individual-focused training versus team-based training. In a cluster randomised trial, we trained healthcare professionals in 40 primary care clinics and measured their intention to hold serious illness conversations immediately (T1), after 1 year (T2) and after 2 years (T3). Primary care clinics (n = 40) were randomly assigned to individual-focused training (comparator) or team-based training (intervention). Average age of the 373 participants was 35–44 years, 79% were women. On a scale of 1 to 7, at T1, the mean intention was 5.33 (SD 0.20) in the individual-focused group and 5.36 (SD 0.18) in the team-based group; at T2, these scores were 4.94 (SD 0.23) and 4.87 (SD 0.21) and at T3, 5.14 (SD 0.24) and 4.59 (SD 0.21), respectively. At T3, the difference in mean intention between study groups had a significant p-value of 0.01. Intention to have serious illness conversations was lower at T2 and T3 after team-based training than after individual-focused training, with a significant difference at 2 years in favour of individual-focused training. Health professionals reported not enough time during consultations for serious illness conversations as a major barrier. Registration number: ClinicalTrials.gov (ID NCT03577002) for the parent clinical trial. [ABSTRACT FROM AUTHOR]

Background: Patients with dementia (PwD) nearing end of life (nEOL) do not always receive optimal end-of-life care, including timely specialist palliative care input. In hospitalized PwD likely to be nEOL, we aimed to determine the prevalence of goals of care discussions; the incidence and timing of referral to palliative care; factors associated with palliative care referral and timely (within 2 days) palliative care referral; and the prevalence of polypharmacy (>5 medications) and in-hospital deprescribing (cessation). Methods: A retrospective chart review of a cohort of PwD admitted under geriatric medicine 1 July 2021–30 June 2022 was conducted, screening to identify nEOL status. Results: A total of 298 patients (mean age of 83.5 [SD 7.4] and 51.3% females) were included in the final analysis. Eleven percent of eligible patients (33/298) died during admission. Overall, 80.9% had discussed an advance care plan (ACP). The mean time from admission to the discussion of an ACP was 1 day (SD = 5.02). One in twenty (5.4%) had their goals of care revised during admission, with 15 transitioning to palliation. Only 7.1% were referred to palliative care during admission. The mean time to referral was 9.8 days (SD 7.3; range 0–26). One in fourteen (7.4%) were discharged from hospital on an end-of-life pathway. In multivariable analysis, both the clinical frailty score (CFS) (aOR per unit increase 3.66; 95%CI 1.65–8.09, p = 0.001) and meeting ≥ 2 deterioration criteria (per CriSTAL tool) (OR 3.68; 95% CI 1.07–12.70, p = 0.039) were independently associated with referral to palliative care. Polypharmacy was common at admission (76.2%), with a mean number of medications of 8.4 (SD = 4). The median number of medications ceased during admission was two (IQR 0–4). Conclusions: Contrary to our hypothesis, we found a high quality of care of PwD likely nEOL, reflected by frequent ACPs in hospital, but it fell short of palliative care specialist input. Polypharmacy on admission and discharge may be further improved by aligning medication use with goals of care among PwD approaching the end of life, and considering the hospital nurse-driven identification of practice gaps is encouraged. [ABSTRACT FROM AUTHOR]

Background: In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands. Methods: A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences. Results: We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment. Conclusion: The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries. [ABSTRACT FROM AUTHOR]

Background: Black/African American women with breast cancer have a disproportionately higher risk of mortality compared to other race groups, although their overall incidence of disease is lower. Despite this, advance care planning (ACP) and consequent code status documentation remain low in this vulnerable patient population. Code status orders (i.e., Full code, Do Not Attempt Resuscitation [DNAR], Do Not Intubate [DNI]) allow consideration of patient preferences regarding the use of aggressive treatments, such as cardiopulmonary resuscitation and intubation. The aim of this study is to characterize presence of code status orders and determine whether race affects code status documentation after the first encounter for breast cancer. Methods: Data were derived from 7524 women with breast cancer from the University of Chicago Medical Center (UCMC) between 2016 and 2021. Cox regression was used to estimate the effects of race and adjusted for age, ethnicity, inpatient stays, metastatic breast cancer, marital status, and body mass index. Results: The sample included 60.5% White, 3.6% Asian/Mideast Indian, 28.9% Black/African American, and 7.0% other or unknown race. Results indicate that code status orders after the first breast cancer encounter were uncommon (7.2%). Black/African American race (HR = 2.74; 95% CI: 1.75, 4.28) emerged as a significant factor associated with any code status orders compared to other race groups even when adjusting for covariates. Conclusions: Code status documentation in this sample of women with breast cancer was low overall, yet rates were higher among Black/African American patients compared to other race groups. In fact, race remains a significant predictor of code status documentation even when accounting for indirect measures of cancer severity. This could be denoting the racial disparities (e.g., higher cancer malignancy such as triple negative breast cancer) in breast cancer mortality risk. Future research is needed to identify factors unique to Black/African American women that would increase code status documentation so that goal concordant care can be prioritized among patients with breast cancer. [ABSTRACT FROM AUTHOR]

Background: Palliative care must be tailored for patients with extended disease trajectories, such as those with hormone receptor-positive, Human Epidermal Growth Factor Receptor 2 (HER2)-negative advanced breast cancer (ABC), including the appropriate timing of discontinuing treatment. This study aimed to assess the interval between the last oncologist visit and death and the application of systemic treatment near the end of life in this patient population. Methods: This retrospective study included patients with luminal ABC who received at least two lines of palliative systemic treatment at the National Research Institute of Oncology in Poland, and died between November 2020 and March 2024. Results: Seventy-six women, with a median age 62.8 years (range: 35.3–91.5), were included. The median number of prior palliative systemic treatment lines was three (range: 2–6). At their last recorded oncologist visit, 75% of the patients were receiving active treatment (53% with hormonal therapy and 22% with chemotherapy). Only 25% were under continuous palliative care at this visit. Treatment was administered within the last month of life to 53% of the patients. The median duration from the last oncologist visit to death was 23 days (range: 0–408). The duration of this time interval was only associated with the performance status at the last visit (p < 0.05). Conclusions: Oncologists frequently delay the recognition of the need to discontinue systemic therapy. Patients with luminal HER2-negative ABC may be offered numerous effective lines of systemic treatment, complicating this decision further. Implementing clearer guidelines for end-of-life care for this group and providing proper training for healthcare providers is essential. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient's medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families. Methods: This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family's prediction accuracy of patient's treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient's end-of-life (EOL) care preference was respected; patient's decisional conflict; quality of communication; family's decision-making confidence; family's anxiety and depression; and patients' and family members' satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models. Discussion: This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice. Trial registration: ClinicalTrials.gov Identifier: NCT05935540. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is pivotal in mitigating end-of-life suffering and ensuring healthcare congruence with the values of older adults and dignity in death. Despite its paramount importance, the current readiness for ACP among community-dwelling older adults and the intricate influencing factors have yet to be explored. Objective: To review the literature focusing on ACP readiness among community-dwelling older adults and the influencing factors. Methods: A scoping review conducted using the Arksey and O'Malley (2005) framework. Electronic databases (PubMed, CINAHL, Cochrane, Web of Science, PsycINFO), as well as grey literature databases (OpenGrey and GreyLit.org) were searched to identify studies published in English between January 2012 and March 2023. Results: 19 studies were selected, comprising 3 qualitative, 13 quantitative, 2 mixed-methods, and 1 review article. The study evaluated the readiness of older adults for ACP by examining their knowledge and attitudes. It categorizes influencing factors into intrinsic and extrinsic levels. This review revealed that the knowledge about ACP among older adults across all settings was limited. However, they had positive attitudes toward it. In addition, intrinsic factors including sociodemographic characteristics, psychological factors, and family relationships, along with extrinsic factors including health care professionals' attitudes and experience, as well as policies and laws, influenced the ACP readiness among older adults. Conclusions: This study established the groundwork for future ACP intervention trials, providing a theoretical framework to guide their design and implementation. operationalization. [ABSTRACT FROM AUTHOR]

Background Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status. Patients and Methods We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care. Results With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P  < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P  < .001). Conclusions The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations. [ABSTRACT FROM AUTHOR]

Background and Objectives Oral health of older adults in nursing homes is poor, which can negatively affect general health and well-being. Most oral health problems are preventable with good oral hygiene and regular dental check-ups. Caregivers can help improve residents' oral health through regular oral health assessments. The interRAI instrument used in Long-Term Care Facilities to evaluate older adults' health and well-being, has the potential to integrate oral care into general care planning. The recently optimized Oral Health Section for inclusion in the interRAI instruments (OHS-interRAI) enables nondental caregivers to identify residents requiring help with oral hygiene and/or a dental referral. This study reports the first data obtained using the OHS-interRAI, describing the oral health situation of older adults in Flemish and Dutch nursing homes. Research Design and Methods In this cross-sectional study, interRAI Long-Term Care Facilities data, including OHS-interRAI data, were collected from October 2020 to January 2023 and analyzed from 417 and 795 persons aged 65 years or older in Flemish and Dutch nursing homes, respectively. Results Most common oral health problems were poor oral hygiene and compromised teeth. Differences in oral health were found between Flemish and Dutch residents. Flemish residents had significantly more problems with chewing, dry mouth, oral and denture hygiene, and tongue condition than their Dutch counterparts. They also had a higher need for help with oral hygiene (19.4% vs 14.0%), and a dental referral (36.8% vs 20.9%). Older adults in Flemish nursing homes (20.3%) had significantly fewer dental check-ups than those in Dutch nursing homes (73.5%). Discussion and Implications The use of the OHS-interRAI by nondental caregivers identified at least one-third of the residents requiring help with oral hygiene and/or a dental referral. By means of trigger algorithms (Collaborative Action Points), the OHS-interRAI enables the integration of oral care into general care planning. [ABSTRACT FROM AUTHOR]

Background: Advance Care Planning via Group Visits (ACP-GV) is a patient-centered intervention facilitated by a clinician using a group modality to promote healthcare decision-making among veterans. Participants in the group document a "Next Step" to use in planning for their future care needs. The next step may include documentation of preferences in an advance directive, discussing plans with family, or anything else to fulfill their ACP needs. This evaluation seeks to determine whether there are identifiable subgroups of group participants with differing needs prior to delivery of the ACP-GV program and, if so, to use information about the subgroups to enhance the program offered to veterans in United States Department of Veterans Affairs (VA) healthcare settings. Methods: We conducted a secondary analysis of national data from a quality improvement evaluation. Patient- and provider-level data from administrative healthcare records for VA users in all 50 states, territories, and the District of Columbia provides data on veterans attending ACP-GV during federal fiscal years 2018–2022 (N = 26,857). Latent class analysis seeks to identify the various subgroups of veterans based on their level of ACP self-efficacy before attending ACP-GV and any demographic differences across the resulting subgroups of veterans attending ACP-GV. ACP self-efficacy is derived from seven items obtained from a participant worksheet used during the group. Results: Analysis revealed two distinct groups of veterans, distinguishable by their pre-ACP-GV levels of one aspect of ACP self-efficacy: prior knowledge of ACP. Veterans with higher prior knowledge of ACP are associated with an identified next step focused on checking their current AD status and updating it, and veterans with lower ACP prior knowledge are associated with identifying a next step to discuss ACP more fully with family. Differences in age, sex, race, ethnicity, and marital status exist across subgroups of veterans. Conclusion: Greater attention must be paid to ACP and veterans' prior knowledge of ACP to consistently encourage annual review and status updates. [ABSTRACT FROM AUTHOR]

Background: Chronic kidney disease (CKD) prevalence is steadily increasing, in part due to increased multimorbidity in our aging global population. When progression to kidney failure cannot be avoided, people need unbiased information to inform decisions about whether to start dialysis, if or when indicated, or continue with holistic person-centred care without dialysis (conservative kidney management). Comparisons suggest that while there may be some survival benefit from dialysis over conservative kidney management, in people aged 80 years and over, or with multiple health problems or frailty, this may be at the expense of quality of life, hospitalisations, symptom burden and preferred place of death. Prepare for Kidney Care aims to compare preparation for a renal dialysis pathway with preparation for a conservative kidney management pathway, in relation to quantity and quality of life in multimorbid, frail, older people with advanced CKD. Methods: This is a two-arm, superiority, parallel group, non-blinded, individual-level, multi-centre, pragmatic trial, set in United Kingdom National Health Service (NHS) kidney units. Patients with advanced CKD (estimated glomerular filtration rate < 15 mL/min/1.73 m2, not due to acute kidney injury) who are (a) 80 years of age and over regardless of frailty or multimorbidity, or (b) 65–79 years of age if they are frail or multimorbid, are randomised 1:1 to 'prepare for responsive management', a protocolised form of conservative kidney management, or 'prepare for renal dialysis'. An integrated QuinteT Recruitment Intervention is included. The primary outcome is mean total number of quality-adjusted life years during an average follow-up of 3 years. The primary analysis is a modified intention-to-treat including all participants contributing at least one quality of life measurement. Secondary outcomes include survival, patient-reported outcomes, physical functioning, relative/carer reported outcomes and qualitative assessments of treatment arm acceptability. Cost-effectiveness is estimated from (i) NHS and personal social services and (ii) societal perspectives. Discussion: This randomised study is designed to provide high-quality evidence for frail, multimorbid, older patients with advanced CKD choosing between preparing for dialysis or conservative kidney management, and healthcare professionals and policy makers planning the related services. Trial registration: ISRCTN, ISRCTN17133653 (https://doi.org/10.1186/ISRCTN17133653). Registered 31 May 2017. [ABSTRACT FROM AUTHOR]

Background: Through advocacy initiatives such as roadshows during "National ACP Week", the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among 'ACP Week' respondents which may be used to formulate strategies to increase ACP documentation in Singapore. Methods: A cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation. Results: The mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02–1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36–11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06–46.73). Subgroup analyses revealed that those aged 20–39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes. Conclusion: Advocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts. [ABSTRACT FROM AUTHOR]

Within the healthcare settings of the United States Department of Veterans Affairs (VA), one patient-centered intervention, Advance Care Planning via Group Visits (ACP-GV), engages veterans and those they trust in advance care planning (ACP) by facilitating a discussion that encourages participants to plan for future healthcare needs. ACP-GV is a one-hour, single session group intervention facilitated by a trained clinical professional (e.g., physician, nurse, social worker, psychologist, chaplain) and delivered in a healthcare or community-based setting. Using reporting guidelines for group-based and educational interventions, this paper aims to describe the ACP-GV Facilitator Training used to prepare clinical professionals to offer the ACP-GV intervention to participants. We provide health professional students and early career health professionals with an overview of the training and key tips for using group modalities in the clinical setting. Although the training is initially directed towards health professionals who are learning to offer ACP-GV for the first time, our tips for teaching also focus on and extend to facilitating ACP-GV directly with veterans, caregivers, and those they trust. The ACP-GV Facilitator Training is sequential in that it expects clinicians to first learn the required educational content and how to plan a group, then it engages clinicians in practicing group facilitation skills. At the conclusion of the training, clinicians are then instructed to use the training materials to transfer the information and skills they learned about ACP-GV to patients they encounter in their respective work settings. The culmination of the ACP-GV Facilitator Training is, therefore, when the clinician is able to facilitate their own group, guide discussions and activities, actively use training materials, and encourage veterans and those they trust to participate in a discussion regarding ACP in a group setting. Finally, we share key resources for publicly available and accessible online trainings to promote spread outside of VA. ACP-GV's Facilitator Training can assist healthcare professionals in implementing ACP-GV in a variety of care settings. [ABSTRACT FROM AUTHOR]

Background: Past studies have shown mixed results on how gender and living with a spouse or partner impact advance care planning (ACP). Few if any have tested for the interaction between these two variables. Objective: We examined how gender and couple status interact to impact the use of ACP practices including written instructions, designating a durable power of attorney for healthcare (DPOAHC), and discussing one's decisions with others. Design: We used cross-sectional data taken from the Health and Retirement Study, a longitudinal study of adults over the age of 50 in the United States. Methods: Data are from 632 respondents who died between the 2016 core survey and the 2018 exit survey. Participants had completed the 2016 survey and had a proxy informant complete the 2018 exit survey after their death. Generalized linear mixed models were used to test for main effects and interactions. Results: Women were more likely than men to designate a DPOAHC and to discuss their wishes with others. Women living without a partner were more likely than men living without a partner and coupled households to discuss their wishes with family or others. Conclusion: Both gender and couple status are important variables associated with ACP practices. Healthcare providers may want to reach out to women living within a coupled household and men living without a partner to ensure that they know the benefits of ACP. Plain language summary: Are men and women living with a partner less likely to make plans for the type of medical treatment they prefer at the end of life? Why was the study done? To see if men and women living alone or with a partner were more likely to make plans for the type of medical treatment they preferred at the end of life. We examined whether they had written plans, designated someone to make decisions for them, or discussed their wishes with other family members or healthcare providers before they died. What did the researchers do? The research team used survey data from the Health and Retirement Study in the United States on 632 people who had completed a survey in 2016 and died within two years. A family member or friend completed a survey after the person's death reporting on their preferences for end-of-life medical care. What did the researchers find? Women were more likely than men to designate another person to make medical decisions for them and to discuss their wishes with others. Single women were more likely than single men and people living with a partner to discuss their wishes with family or others. What do the findings mean? Women living alone may be more likely to see the benefits of making their end-of-life medical care wishes known to others. Men living alone were the least likely to make their wishes known. Healthcare providers may want to keep these differences in mind when reaching out to patients to explain the benefits of making plans for medical treatments in the future. [ABSTRACT FROM AUTHOR]

Clinicians have a sincere desire to ensure that the decision-making processes of seriously ill patients are well informed throughout illness trajectories. A quagmire of variable terminology (e.g., advance care planning, serious illness conversations, goals-of-care discussions, etc.), however, currently predominates the field of serious illness communication. This creates uncertainty among clinicians as to the overall purpose, tasks, and specific outcomes of conversations that address serious illness. The Preparing or Deciding model is a unifying framework that provides conceptual clarity by helping clinicians understand their role in leading these important conversations. The Preparing or Deciding model simply posits that conversations with seriously ill patients are about either preparing or deciding. It considers these tasks to be mutually exclusive, which can help bypass many of the barriers to having these conversations. The Preparing or Deciding model compliments all existing resources and frameworks and is applicable to all healthcare practitioners in every care setting. To help move forward serious illness communication education and research, as well as process improvement efforts more effectively, here, we describe the Preparing or Deciding model. [ABSTRACT FROM AUTHOR]

Introduction: Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions. Method: We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients' clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected. Results: In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from − 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%. Conclusion: After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR). [ABSTRACT FROM AUTHOR]

INTRODUCTION: Best practices for conducting advance care planning (ACP) among persons with cognitive impairment exist, but evidence‐based models are lacking for the primary care setting. METHODS: We tested a remote multicomponent ACP model (SHARE) versus minimally enhanced usual care in 273 person–family dyads from eight primary care practices. RESULTS: Mean patient age was 88.0 years, 85 (31.1%) were Black/Latino; 189 (69.2%) had moderate‐to‐severe cognitive impairment. Most (101/145; 69.6%) intervention dyads engaged in ACP. At follow‐up, no treatment effect was observed for care partner–reported quality of communication about end‐of‐life care at 6 or 12 months, but intervention patients reported better quality of communication about end‐of‐life care at 12 months. Intervention care partners and patients reported greater readiness to engage in ACP at 6 and 12 months, respectively, and increased completion of key aspects of ACP. DISCUSSION: SHARE supported key aspects of ACP processes and communication about end‐of‐life care. Highlights: Primary care–based models of ACP for persons with dementia are lacking.Involving persons with cognitive impairment in remote ACP is feasible with care partner involvement.Results indicate benefit for aspects of ACP processes and communication about end‐of‐life care. [ABSTRACT FROM AUTHOR]

Abstract Background Demographic changes are leading to a rise in the demand for care services, with nursing homes (NHs) playing an increasingly important role in end-of-life care. Evidence suggests that NH residents at the end of life significantly benefit from hospice and palliative care and the implementation of advance care planning (ACP). In 2018, Germany passed a law to promote the implementation of ACP in NHs and to enable the refinancing of ACP services by the statutory health insurance funds. The present study aimed at assessing current hospice and palliative care structures, examining the implementation of ACP and identifying barriers to obtain approval for billing for ACP services under this specific legislative (§ 132 g SGB V). Methods As a part of the "Gut-Leben" project, the present study administered a cross-sectional quantitative survey in 2023 to evaluate hospice and palliative care structures, the implementation of ACP, and barriers to ACP approval in German NHs. A questionnaire was distributed to a random sample of N = 1,369 NH managers. Responses were analyzed using descriptive statistical methods. Results N = 330 NH managers responded to the questionnaire (24.1% response). The majority described the end-of-life care structures in their region as rather good (77.7; n = 256), and very strong collaboration was reported with general practitioners (54.7%), physiotherapists (42.9%), and palliative care physicians (38.6%). Awareness of the legislative for ACP was reported by n = 201 NHs (64.4%), and 100 (50.3%) of these NHs had already obtained approval. The primary barriers to approval identified by 68 NHs included a lack of available staff (48.5%; n = 33) and a small facility size (27.9%; n = 19). Conclusions Although half of the NHs have implemented ACP, there is still a need to enhance awareness of the ACP legislative. These efforts should aim to reduce the existing barriers to approval, which could be achieved, for instance, by fostering collaboration between NHs or by cooperating with external ACP service providers.

Abstract Background Early palliative care interventions in oncology, as recommended by international oncology societies, promote patient understanding and support decision-making. At the same time, shared decision-making models are being developed to enhance patient participation as part of a new model of patient-physician relationship. For patients with palliative needs, this participation is essential and helps to avoid futile and aggressive treatments at the end of life. The aim of this study is to observe decision making during meetings between oncology and palliative care professionals, focusing particularly on the components of shared decision-making models, but also on the role played by palliative care professionals. Methods We conducted a non-participant observation of multidisciplinary meetings and outpatient clinic activities in two Comprehensive Cancer Centres in France. Field notes were then coded using thematic content analysis. Deductive analysis was conducted using the observation grid developed from Elwyn's three-talk model. Results Only a few elements of the different models of shared decision-making are apparent in the multidisciplinary meetings. Palliative care professionals emphasise the importance of involving patients and providing them with information about the advantages and disadvantages of different treatment options. However, patient involvement in decision-making remains difficult in daily practice. Decisions to discontinue oncological treatment are often driven by clinical and biological signs of terminal evolution rather than shared decision-making. Conclusions There are still cultural and organisational barriers to actual implementation of early integrated onco-palliative care. Promotion of shared decision making can be a strong lever of change which is frequently mobilised by palliative care teams.

Abstract Background Black/African American women with breast cancer have a disproportionately higher risk of mortality compared to other race groups, although their overall incidence of disease is lower. Despite this, advance care planning (ACP) and consequent code status documentation remain low in this vulnerable patient population. Code status orders (i.e., Full code, Do Not Attempt Resuscitation [DNAR], Do Not Intubate [DNI]) allow consideration of patient preferences regarding the use of aggressive treatments, such as cardiopulmonary resuscitation and intubation. The aim of this study is to characterize presence of code status orders and determine whether race affects code status documentation after the first encounter for breast cancer. Methods Data were derived from 7524 women with breast cancer from the University of Chicago Medical Center (UCMC) between 2016 and 2021. Cox regression was used to estimate the effects of race and adjusted for age, ethnicity, inpatient stays, metastatic breast cancer, marital status, and body mass index. Results The sample included 60.5% White, 3.6% Asian/Mideast Indian, 28.9% Black/African American, and 7.0% other or unknown race. Results indicate that code status orders after the first breast cancer encounter were uncommon (7.2%). Black/African American race (HR = 2.74; 95% CI: 1.75, 4.28) emerged as a significant factor associated with any code status orders compared to other race groups even when adjusting for covariates. Conclusions Code status documentation in this sample of women with breast cancer was low overall, yet rates were higher among Black/African American patients compared to other race groups. In fact, race remains a significant predictor of code status documentation even when accounting for indirect measures of cancer severity. This could be denoting the racial disparities (e.g., higher cancer malignancy such as triple negative breast cancer) in breast cancer mortality risk. Future research is needed to identify factors unique to Black/African American women that would increase code status documentation so that goal concordant care can be prioritized among patients with breast cancer.

Abstract Background In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands. Methods A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences. Results We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment. Conclusion The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries.

Abstract Background Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient’s medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families. Methods This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family’s prediction accuracy of patient’s treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient’s end-of-life (EOL) care preference was respected; patient’s decisional conflict; quality of communication; family’s decision-making confidence; family’s anxiety and depression; and patients’ and family members’ satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models. Discussion This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice. Trial registration ClinicalTrials.gov Identifier: NCT05935540.

Abstract Background Advance care planning (ACP) is pivotal in mitigating end-of-life suffering and ensuring healthcare congruence with the values of older adults and dignity in death. Despite its paramount importance, the current readiness for ACP among community-dwelling older adults and the intricate influencing factors have yet to be explored. Objective To review the literature focusing on ACP readiness among community-dwelling older adults and the influencing factors. Methods A scoping review conducted using the Arksey and O’Malley (2005) framework. Electronic databases (PubMed, CINAHL, Cochrane, Web of Science, PsycINFO), as well as grey literature databases (OpenGrey and GreyLit.org) were searched to identify studies published in English between January 2012 and March 2023. Results 19 studies were selected, comprising 3 qualitative, 13 quantitative, 2 mixed-methods, and 1 review article. The study evaluated the readiness of older adults for ACP by examining their knowledge and attitudes. It categorizes influencing factors into intrinsic and extrinsic levels. This review revealed that the knowledge about ACP among older adults across all settings was limited. However, they had positive attitudes toward it. In addition, intrinsic factors including sociodemographic characteristics, psychological factors, and family relationships, along with extrinsic factors including health care professionals’ attitudes and experience, as well as policies and laws, influenced the ACP readiness among older adults. Conclusions This study established the groundwork for future ACP intervention trials, providing a theoretical framework to guide their design and implementation. operationalization.

Abstract Background Advance Care Planning via Group Visits (ACP-GV) is a patient-centered intervention facilitated by a clinician using a group modality to promote healthcare decision-making among veterans. Participants in the group document a “Next Step” to use in planning for their future care needs. The next step may include documentation of preferences in an advance directive, discussing plans with family, or anything else to fulfill their ACP needs. This evaluation seeks to determine whether there are identifiable subgroups of group participants with differing needs prior to delivery of the ACP-GV program and, if so, to use information about the subgroups to enhance the program offered to veterans in United States Department of Veterans Affairs (VA) healthcare settings. Methods We conducted a secondary analysis of national data from a quality improvement evaluation. Patient- and provider-level data from administrative healthcare records for VA users in all 50 states, territories, and the District of Columbia provides data on veterans attending ACP-GV during federal fiscal years 2018–2022 (N = 26,857). Latent class analysis seeks to identify the various subgroups of veterans based on their level of ACP self-efficacy before attending ACP-GV and any demographic differences across the resulting subgroups of veterans attending ACP-GV. ACP self-efficacy is derived from seven items obtained from a participant worksheet used during the group. Results Analysis revealed two distinct groups of veterans, distinguishable by their pre-ACP-GV levels of one aspect of ACP self-efficacy: prior knowledge of ACP. Veterans with higher prior knowledge of ACP are associated with an identified next step focused on checking their current AD status and updating it, and veterans with lower ACP prior knowledge are associated with identifying a next step to discuss ACP more fully with family. Differences in age, sex, race, ethnicity, and marital status exist across subgroups of veterans. Conclusion Greater attention must be paid to ACP and veterans’ prior knowledge of ACP to consistently encourage annual review and status updates.

Abstract Within the healthcare settings of the United States Department of Veterans Affairs (VA), one patient-centered intervention, Advance Care Planning via Group Visits (ACP-GV), engages veterans and those they trust in advance care planning (ACP) by facilitating a discussion that encourages participants to plan for future healthcare needs. ACP-GV is a one-hour, single session group intervention facilitated by a trained clinical professional (e.g., physician, nurse, social worker, psychologist, chaplain) and delivered in a healthcare or community-based setting. Using reporting guidelines for group-based and educational interventions, this paper aims to describe the ACP-GV Facilitator Training used to prepare clinical professionals to offer the ACP-GV intervention to participants. We provide health professional students and early career health professionals with an overview of the training and key tips for using group modalities in the clinical setting. Although the training is initially directed towards health professionals who are learning to offer ACP-GV for the first time, our tips for teaching also focus on and extend to facilitating ACP-GV directly with veterans, caregivers, and those they trust. The ACP-GV Facilitator Training is sequential in that it expects clinicians to first learn the required educational content and how to plan a group, then it engages clinicians in practicing group facilitation skills. At the conclusion of the training, clinicians are then instructed to use the training materials to transfer the information and skills they learned about ACP-GV to patients they encounter in their respective work settings. The culmination of the ACP-GV Facilitator Training is, therefore, when the clinician is able to facilitate their own group, guide discussions and activities, actively use training materials, and encourage veterans and those they trust to participate in a discussion regarding ACP in a group setting. Finally, we share key resources for publicly available and accessible online trainings to promote spread outside of VA. ACP-GV’s Facilitator Training can assist healthcare professionals in implementing ACP-GV in a variety of care settings.

Abstract Background Through advocacy initiatives such as roadshows during “National ACP Week”, the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among ‘ACP Week’ respondents which may be used to formulate strategies to increase ACP documentation in Singapore. Methods A cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation. Results The mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02–1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36–11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06–46.73). Subgroup analyses revealed that those aged 20–39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes. Conclusion Advocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts.

Abstract Introduction Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions. Method We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients’ clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected. Results In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from − 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%. Conclusion After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR).

BACKGROUND: Physician Orders for Life Sustaining Treatment (POLST) document instructions for intensity of care based upon patient care preferences. POLST forms generally reflect patients wishes and dictate subsequent medical care, but it is not known how POLST use and content among nursing home residents is associated with inpatient utilization across a large population. OBJECTIVE: Evaluate the relationship between POLST use and content with hospital utilization among nursing home residents in California. DESIGN: Retrospective cohort study using the Minimum Data Set linked to California Section S (POLST documentation), the Medicare Beneficiary Summary File, and Medicare line item claims. PATIENTS: California nursing home residents with Medicare fee-for-service insurance, 2011-2016. MAIN MEASURES: Hospitalization, days in the hospital, and days in the intensive care unit (ICU) after adjustment for resident and nursing home characteristics. KEY RESULTS: The 1,112,834 residents had a completed and signed (valid) POLST containing orders for CPR with Full treatment 29.6% of resident-time (in person-years) and a DNR order with Selective treatment or Comfort care 27.1% of resident-time. Unsigned POLSTs accounted for 11.3% of resident-time. Residents experienced 14 hospitalizations and a mean of 120 hospital days and 37 ICU days per 100 person-years. Residents with a POLST indicating CPR Full treatment had utilization nearly identical to residents without a POLST. A gradient of decreased utilization was related to lower intensity of care orders. Compared to residents without a POLST, residents with a POLST indicating DNR Comfort care spent 56 fewer days in the hospital and 22 fewer days in the ICU per 100 person-years. Unsigned POLST had a weaker and less consistent relationship with hospital utilization. CONCLUSIONS: Among California NH residents, there is a direct relationship between intensity of care preferences in POLST and hospital utilization. These findings emphasize the importance of a valid POLST capturing informed preferences for nursing home residents.

CONTEXT: Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. OBJECTIVES: Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. METHODS: A Chinese Community Committee (N = 19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4 = most ready); and assessed event acceptability. RESULTS: A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. CONCLUSION: Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.

BACKGROUND: Despite known racial disparities in advance care planning (ACP), little is known about ACP disparities experienced by US immigrants. METHODS: We used data from the 2016 wave of the Health and Retirement Study. We defined ACP engagement as self-reported end-of-life (EOL) discussions, designation of a power of attorney (DPOA), documented living will, or any of the three behaviors. Immigration status was determined by respondent-reported birth outside the United States. Time in the United States was calculated by subtracting the year of arrival in the United States from the survey year of 2016. We used multivariable logistic regression to estimate the association between ACP engagement and immigration status and the relationship of acculturation to ACP engagement, adjusting for sociodemographics, religiosity, and life expectancy. RESULTS: Of the total cohort (N = 9928), 10% were immigrants; 45% of immigrants identified as Hispanic. After adjustment, immigrants had significantly lower adjusted probability of any ACP engagement (immigrants: 74% vs. US-born: 83%, p

Background: Little is known about the patient-reported quality of and satisfaction with advance care planning (ACP) conversations with surrogates and clinicians among English- and Spanish-speaking older adults, or the potential disparities associated with ACP communication satisfaction. Objectives: To determine patients perceived quality of and satisfaction with ACP surrogate/clinician conversations and associated patient characteristics. Design: Cross-sectional baseline data were used from two ACP trials, 2013-2017. Outcomes included self-reported ACP conversation quality (general vs. detailed) and communication satisfaction (5-point Likert scale). Associations were determined by chi-squared and t-tests. Setting/Subjects: Subjects were primary care patients ≥55 years with chronic/serious illness in the United States. Results: Of 1398 patients, mean age was 65.6 years (±7.7), 46% women, 32% Spanish speaking, 34% had limited health literacy, and 589 (42%) reported conversations with surrogates and 216 (15%) with clinicians. Of these, less than half rated the conversations as detailed high quality (clinician: 43%; surrogate: 37%). Five-point communication satisfaction scores were higher with detailed versus general conversations (e.g., surrogates: 4.4 vs. 4.1, p = 0.001; clinicians: 4.4 vs. 4.2, p = 0.18) and more often reported by men versus women [(4.4 (0.8) vs. 4.0 (1.0), p = 0.003]; those with adequate versus limited health literacy [4.4 (0.8) vs. 4.0 (0.9), p = 0.002]; and English versus Spanish speakers [4.5 (0.7) vs. 3.5 (0.9), p

BACKGROUND: The Centers for Medicare & Medicaid Services (CMS) began to reimburse clinicians for advance care planning (ACP) discussions, effective January 1, 2016. We sought to characterize the timing and setting of first-billed ACP discussions among Medicare decedents to inform future research on ACP billing codes. METHODS: Using a random 20% sample of Medicare fee-for-service beneficiaries aged 66 years and older who died in 2017-2019, we described the timing (relative to death) and setting (inpatient, nursing home, office, or outpatient with or without Medicare Annual Wellness Visit [AWV], home or community, or elsewhere) of the first-billed ACP discussion for each beneficiary. RESULTS: Our study included 695,985 decedents (mean [SD] years of age, 83.2 [8.8]; 54.2% female); the proportion of decedents who had at least one billed ACP discussion increased from 9.7% in 2017 to 21.9% in 2019. We found that the proportion of first-billed ACP discussions held during the last month of life decreased from 37.0% in 2017 to 26.2% in 2019, while the proportion of first-billed ACP discussions held more than 12 months before death increased from 11.1% in 2017 to 35.2% in 2019. We also found that the proportion of first-billed ACP discussions held in the office or outpatient setting along with AWV increased over time (from 10.7% in 2017 to 14.1% in 2019), while the proportion held in the inpatient setting decreased (from 41.7% in 2017 to 38.0% in 2019). CONCLUSIONS: We found that with increasing exposure to the CMS policy change, uptake of the ACP billing code has increased; first-billed ACP discussions are occurring sooner before the end-of-life stage and are more likely to occur with AWV. Future studies should evaluate changes in ACP practice patterns, rather than only an increasing uptake in ACP billing codes, following the policy implementation.

BACKGROUND: For patients who may permanently or temporarily lose their ability to communicate preferences, advance care planning is a critical mechanism to guide medical decision-making but is currently underused among surgical patients. METHODS: A resident-led quality improvement project, including education and performance measurement, was conducted on an emergency general surgery service to increase the completion of inpatient advance care planning notes using a specialized template in the electronic health record. Advance care planning documentation was defined as either preadmission advance care planning documentation (eg, advance directive) or inpatient advance care planning (use of the electronic health record template). Data from patients admitted to the emergency general surgery service for 12+ hours were analyzed, and baseline data (July 2020 to June 2021) were compared with data from the intervention period (July 2021 to June 2022). The chart review evaluated the content of the inpatient advance care planning documentation from the intervention period. RESULTS: The frequency of inpatient advance care planning documentation increased (9.3%, n = 56 to 16.6%, n = 92, P < .001) with a greater contribution of inpatient advance care planning notes by the surgery team (16.7% to 55.4%) in the intervention period. Content analysis indicated that 79.0% of inpatient advance care planning notes listed preferences for life-sustaining therapy, 78.3% listed surrogacy, 57.3% listed overall health goals, and 50.3% listed treatment goals specific to the surgical encounter. CONCLUSION: Although a resident-led quality improvement project contributed to greater adoption of standardized inpatient advance care planning documentation on an emergency general surgery service, progress was slow, and integration into standard work was not achieved. Future efforts are needed to better understand the integration of essential advance care planning elements into workflows and to establish inclusive educational programming to prepare all team members for conducting and documenting advance care planning conversations.

Clinicians have a sincere desire to ensure that the decision-making processes of seriously ill patients are well informed throughout illness trajectories. A quagmire of variable terminology (e.g., advance care planning, serious illness conversations, goals-of-care discussions, etc.), however, currently predominates the field of serious illness communication. This creates uncertainty among clinicians as to the overall purpose, tasks, and specific outcomes of conversations that address serious illness. The Preparing or Deciding model is a unifying framework that provides conceptual clarity by helping clinicians understand their role in leading these important conversations. The Preparing or Deciding model simply posits that conversations with seriously ill patients are about either preparing or deciding. It considers these tasks to be mutually exclusive, which can help bypass many of the barriers to having these conversations. The Preparing or Deciding model compliments all existing resources and frameworks and is applicable to all healthcare practitioners in every care setting. To help move forward serious illness communication education and research, as well as process improvement efforts more effectively, here, we describe the Preparing or Deciding model.

Abstract Background The coronavirus pandemic has hit the oldest and frailest individuals hard, particularly patients and residents in nursing homes. In March 2020, we established a Covid-19 ward at a nursing home in Bergen, western Norway for elderly patients with Sars-CoV-2 infection and in the need of treatment and care in a primary health care facility. The aims of this study were to describe the organization of the ward, the clinical outcomes of infection, treatment, mortality rates in the population, the level of advanced care planning, and end-of-life care for those who died. Methods We present patient characteristics, outcomes, vaccination status, treatment, decisions regarding treatment intensity upon clinical deterioration, and mortality for the patients in the ward. Clinical factors possibly related to a fatal outcome were analysed with chi square test (categorical variables) or t-test (continuous variables). Results 257 patients were included from March 2020 to April 2022. Fifty-nine patients (23.0%) developed respiratory failure. Ten patients (3.9%) were admitted to hospital. Advance care planning was undertaken for 245 (95.3%) of the patients. 30-day mortality rate decreased from 42 to 4% during the study period. Of the 29 (11.3%) patients who died, all were well alleviated in the terminal phase, and 26 (89.7%) of them had a Clinical Frailty Scale (CFS) value ≥ 7. A high score for CFS, respiratory failure and respiratory co-infection were significantly associated with Covid-19 related death within 30 days. Conclusions Covid-19-related mortality markedly decreased during the study period, and a high score for CFS was related to a fatal outcome. Thorough planning of treatment intensity upon deterioration, low hospitalization rates, and good relief for those who died suggest that dedicated Covid-19 wards in nursing homes can provide good treatment for the patients and relieve other nursing homes and specialist health care services.

Abstract Background Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes. Methods In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy. Results Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning. Conclusions A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing. Trial Registration ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007 .

Abstract Background Older cancer patients are vulnerable to poorer health outcomes during cancer treatment. Although the Thai elderly had their own preferences towards future medical care and advance care planning (ACP) could help cancer patients make informed decisions, Thai physicians report a low ACP engagement rate. Thus, this study aimed to explore the perceptions of older cancer patients and their families towards ACP engagement. Method We used a qualitative approach to explore the perceptions of non-haematological cancer patients aged ≥ 60 years old and their primary caregivers. The study was conducted at the Oncology Radiotherapy Referral Center, Songklagarind Hospital in Southern Thailand. Semi-structured in-depth interviews were conducted with the patients and their caregivers. Thematic analysis was used to identify and analyze recurring patterns and themes of perceptions regarding ACP engagement within the interview transcripts. Results Among the 138 families approached, 32 interviews were conducted. Three themes were found: (1) Advantageous opportunity: the patients believed ACP would help them realize their life values, and ensure that their preference would be respected; (2) contemplation and barriers to ACP: ACP is unfamiliar and unnecessary, might have low utility, worry patients and family members, take away optimism, would not be a proper activity for the patient at the current health situation; and (3) Cues for ACP initiation: perceived conformity with one’s religion, awareness of the current cancer state, having multiple comorbidity or experience suffering related with medical care, wishing not to burden family, having close family members, and trust in physicians. Conclusion ACP engagement could be hindered or promoted by perceptions of older patients and/ or their family members, as well as the communication skills of the care providers. Care professionals who aim to initiate ACP should minimize the potential barriers, make the ACP benefits salient, and watch for cues indicating a propitious time to start the ACP conversation.