Adopting the RE-AIM analytic framework for rural program evaluation: experiences from the Advance Care Planning via Group Visits (ACP-GV) national evaluation.

Introduction: To support rigorous evaluation across a national portfolio of grants, the United States Department of Veterans Affairs (VA) Office of Rural Health (ORH) adopted an analytic framework to guide their grantees' evaluation of initiatives that reach rural veterans and to standardize the reporting of outcomes and impacts. Advance Care Planning via Group Visits (ACP-GV), one of ORH's Enterprise-Wide Initiatives, also followed the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. ACP-GV is a national patient-centered intervention delivered in a large, veterans integrated healthcare system. This manuscript describes how RE-AIM was used to evaluate this national program and lessons learned from ORH's annual reporting feedback to ACP-GV on their use of the framework to describe evaluation impacts. Methods: We used patient, provider, and site-level administrative health care data from the VA Corporate Data Warehouse and national program management databases for federal fiscal years (FY) spanning October 1, 2018-September 30, 2023. Measures included cumulative and past FY metrics developed to assess program impacts. Results: RE-AIM constructs included the following cumulative and annual program evaluation results. ACP-GV reached 54,167 unique veterans, including 19,032 unique rural veterans between FY 2018 to FY 2023. During FY 2023, implementation adherence to the ACP-GV model was noted in 91.7% of program completers, with 55% of these completers reporting a knowledge increase and 14% reporting a substantial knowledge increase (effectiveness). As of FY 2023, 66 ACP-GV sites were active, and 1,556 VA staff were trained in the intervention (adoption). Of the 66 active sites in FY 2023, 27 were sites previously funded by ORH and continued to offer ACP-GV after the conclusion of three years of seed funding (maintenance). Discussion: Lessons learned developing RE-AIM metrics collaboratively with program developers, implementers, and evaluators allowed for a balance of clinical and scientific input in decision-making, while the ORH annual reporting feedback provided specificity and emphasis for including both cumulative, annual, and rural specific metrics. ACP-GV's use of RE-AIM metrics is a key step towards improving rural veteran health outcomes and describing real world program impacts.

Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Factors Contributing to Non-Concordance Between End-of-Life Care and Advance Care Planning.

CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.

Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

Measuring patients' medical treatment preferences in advance care planning: development and validation of the Treat-Me-ACP instrument - a secondary analysis of a cluster-randomized controlled trial.

BACKGROUND: Advance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients' medical treatment preferences. METHODS: The design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient's preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach's α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups. RESULTS: Acceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up. CONCLUSIONS: The Treat-Me-ACP can be used to evaluate the dynamics of patients' medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00016886 on 04/06/2019.

Optimizing quality of life: integrating palliative care for patients with hand-foot syndrome in oncology practice.

Hand-foot syndrome (HFS) emerges as one of the common dermatological side effects associated with anticancer medications such as 5-fluorouracil (5-FU), capecitabine and docetaxel. This condition can be notably debilitating, exerting a predominant impact on the clinical, functional and psychosocial domains of health. With prevalence rates of HFS, ranging from 43% to 71%, there exists an unmet need among palliative care physicians to comprehend this syndrome in addressing physical, psychological dimensions and its integrated management within healthcare. This understanding enables them to adopt diverse approaches aimed at preserving the quality of life for patients, by enhancing the overall healthcare experience. Our primary objective is to underscore the imperative for the high-quality integration of palliative care with respect to HFS in contemporary oncology practices. We aim to achieve this by providing evidence-based insights to enhance patient outcomes.The intent of this study: (1) The article delves into the range of symptoms linked to HFS, and stresses the necessity of a holistic strategy and the difference that a palliative physician can contribute during cancer treatment-in picking up certain intricate aspects of patient care and addressing them. (2) The article also highlights the comprehensive approach through the incorporation of quality-of-life assessments, with the goal of enhancing patient outcomes, overall care experience within an integrated healthcare framework.

Advance care planning for patients with end-stage kidney disease on dialysis: narrative review of the current evidence, and future considerations.

Patients with end-stage kidney disease (ESKD) have a high symptom-burden and high rates of morbidity and mortality. Despite this, evidence has shown that this patient group does not have timely discussions to plan for deterioration and death, and at the end of life there are unmet palliative care needs. Advance care planning is a process that can help patients share their personal values and preferences for their future care and prepare for declining health. Earlier, more integrated and holistic advance care planning has the potential to improve access to care services, communication, and preparedness for future decision-making and changing circumstances. However, there are many barriers to successful implementation of advance care planning in this population. In this narrative review we discuss the current evidence for advance care planning in patients on dialysis, the data around the barriers to advance care planning implementation, and interventions that have been trialled. The review explores whether the concepts and approaches to advance care planning in this population need to be updated to encompass current and future care. It suggests that a shift from a problem-orientated approach to a goal-orientated approach may lead to better engagement, with more patient-centred and satisfying outcomes.

Cancer patients' expectations of advance care planning: A typological content analysis of qualitative interviews.

BACKGROUND: Advance care planning (ACP) can help to elicit cancer patients' preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. The presented study, therefore, aims to explore cancer patients' expectations of ACP. METHODS: Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. RESULTS: We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. CONCLUSION: Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.

Qualitative evaluation of a palliative care case management intervention for patients with incurable gastrointestinal cancer (PalMaGiC) in a hospital department.

PURPOSE: Generalist palliative care in hospital departments largely lacks an overall structure to fully manage the symptom burden and support needs of patients with incurable gastrointestinal cancer. Palliative care case management interventions show promising results in reducing healthcare use and enhancing quality of life. Less is known about these interventions and their potential to improve the quality of generalist palliative care in hospital departments. The aim of this study was to explore patients' experience of a palliative care case management intervention (PalMaGiC) to acquire knowledge about its advantages and disadvantages and, if needed, adjust the intervention. METHODS: Qualitative semi-structured interviews with patients (n = 14) with incurable gastrointestinal cancers of the oesophagus, pancreas, colon, or rectum were conducted and analysed using content analysis. Participants in the study were affiliated with PalMaGiC, an intervention in a gastroenterology department based on symptom assessment, care planning, care coordination, and needs-based follow-up. RESULTS: Participants perceived the intervention as filling a gap and as a secure lifeline in the healthcare system since it provided 24-h access, a designated specialist nurse, and a patient-healthcare alliance. Using a needs-based approach, PalMaGiC changed the participants' focus from disease to quality of life. Participants requested more open dialog within complementary and alternative medicine, greater focus on promoting hope and using need assessment questionnaires differently in assessing symptoms and problems. CONCLUSION: The PalMaGiC intervention can potentially meet the needs of patients requiring palliative care in hospital departments, but further development of the content and personalised approach is needed.

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

Background: This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning. Objective: The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning? Design: This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings. Setting: The study was set in Nottinghamshire and Leicestershire in the UK. Results: Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified. Limitations: It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. Conclusions: What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this. Future work: Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding? Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.

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

Advance Care Planning in the Netherlands.

The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches.

Comprehensive conservative care for the management of advanced chronic kidney disease / Le traitement conservateur dans la prise en charge de la maladie rénale chronique

Comprehensive "conservative care" is defined as any active therapeutic procedure for the management of stage 5 chronic kidney disease without recourse to dialysis. This therapeutic option is discussed in elderly, frail patients whose anticipated life expectancy is reduced with dialysis. The decision for conservative management primarily relies on an informed choice by the patient and his caregivers. This holistic approach, focused on quality of life, requires a multidisciplinary approach. The goals are to slow the progression of kidney disease, prevent complications, anticipate the risks of decompensation, provide support for the patient and his caregivers to maintain the best possible quality of life at home. This article describes the principles of conservative management, highlights various barriers to this care pathway, and proposes potential solutions.

Le « traitement conservateur ¼ se définit comme toute procédure thérapeutique active de prise en charge de la maladie rénale chronique au stade 5, sans recours à la suppléance par dialyse. Cette option thérapeutique est discutée chez des patients âgés, fragiles, dont l'espérance de vie anticipée est réduite en cas de recours à la dialyse. La décision de traitement conservateur repose avant tout sur un choix éclairé du patient et de son entourage. Cette prise en charge holistique, centrée sur la qualité de vie, nécessite une approche multidisciplinaire. Les objectifs sont de ralentir la progression de la maladie rénale, d'en prévenir les complications, d'anticiper les risques de décompensation, d'assurer un soutien au patient et à ses aidants afin de maintenir une qualité de vie la plus acceptable possible à domicile. Cet article décrit les principes du traitement conservateur. Nous mettons en perspective différents freins à ce parcours de soins, ainsi que les solutions qui pourraient être envisagées.

How patients with advanced cancer conceptualize prognosis: A phenomenological qualitative inquiry.

BACKGROUND: Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define "prognosis." AIM: The present study examined how patients with advanced cancer conceptualize their "prognosis." It also explored how patients assigned value to prognostic information and the impact of prognosis on life perspectives. DESIGN: A phenomenological approach was used to analyze semi-structured interviews with individuals with advanced cancer to examine how patients define prognosis. SETTING/PARTICIPANTS: English and Spanish-speaking patients with advanced cancer (N = 29) were recruited from ambulatory clinics at a comprehensive cancer center in New York City. RESULTS: To conceptualize prognosis, patients focused on concrete medical data, anticipated survival and quality of life, impact on meaningful life events, uncertainty, and physician affect. They discussed the importance of maintaining normalcy despite prognosis, knowledge as a form of coping, information reframing, and altered decision-making as means of coping with prognostic information. CONCLUSIONS: Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.

Personalised Assessment and Rapid Intervention in Frail Patients With Lung Cancer: The Impact of an Outpatient Occupational Therapy Service.

INTRODUCTION: Lung cancer and its treatments cause or accelerate frailty, detrimentally affecting function and quality of life. Occupational therapists (OTs) provide global assessments and interventions, but services are often available for inpatients. The impact of holistic assessment and early intervention in the outpatient setting is unknown. MATERIALS AND METHODS: A tertiary cancer center in North East England piloted a Lung Cancer Outpatient OT Service for patients with thoracic malignancy and a Clinical Frailty Scale Score (CFS) ≥ 5. Service effectiveness was evaluated through calculation of admission avoidance, hospital length-of-stay reduction, completion/impact of advance care planning and patient/family feedback. Demographics, frailty level, required interventions, and onward referrals were recorded. RESULTS: A total of 153 patients (median age of 71 (range 46-90) received OT assessment and intervention. 48% were in the lowest socioeconomic quintile. Median CFS score was 5 (mildly frail (range: 4-7)) at initial assessment. Total of 918 interventions were delivered (median: 5, IQR: 3-7, Range 0-22). 48% of patients engaged in future planning (national average: 10%-15% P < .0001) and 78.5% achieved preferred place of death (national average 30%). An estimated 37 hospital admissions were avoided. In admitted patients, average inpatient stay when known to the service was 6.5 days less than other frail lung cancer patients in our unit (95% CI 4-9.1 days P < .0001). Higher CFS was associated with poor survival (P < .05). CONCLUSION: Outpatient OT services can avoid and shorten hospital admissions through advance care planning, management of functional disruption, onward referral to other allied health professionals and palliative care. A comprehensive multidisciplinary outpatient service may benefit patients further and should be the focus of future research.

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

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

Patient Engagement With Early Stage Advance Care Planning at a Comprehensive Cancer Center.

BACKGROUND: Establishing care preferences and selecting a prepared medical decision-maker (MDM) are basic components of advance care planning (ACP) and integral to treatment planning. Systematic ACP in the cancer setting is uncommon. We evaluated a systematic social work (SW)-driven process for patient selection of a prepared MDM. METHODS: We used a pre/post design, centered on SW counseling incorporated into standard-of-care practice. New patients with gynecologic malignancies were eligible if they had an available family caregiver or an established Medical Power of Attorney (MPOA). Questionnaires were completed at baseline and 3 months to ascertain MPOA document (MPOAD) completion status (primary objective) and evaluate factors associated with MPOAD completion (secondary objectives). RESULTS: Three hundred and sixty patient/caregiver dyads consented to participate. One hundred and sixteen (32%) had MPOADs at baseline. Twenty (8%) of the remaining 244 dyads completed MPOADs by 3 months. Two hundred and thirty-six patients completed the values and goals survey at both baseline and follow-up: at follow-up, care preferences were stable in 127 patients (54%), changed toward more aggressive care in 60 (25%), and toward the focus on the quality of life in 49 (21%). Correlation between the patient's values and goals and their caregiver's/MPOA's perception was very weak at baseline, improving to moderate at follow-up. Patients with MPOADs by study completion had statistically significant higher ACP Engagement scores than those without. CONCLUSION: A systematic SW-driven intervention did not engage new patients with gynecologic cancers to select and prepare MDMs. Change in care preferences was common, with caregivers' knowledge of patients' treatment preferences moderate at best.

A meta-synthesis on the older adults' perspective of advance care planning.

AIM: To synthesise the evidence regarding older adults' perception of advance care planning in preparation for end-of-life care. BACKGROUND: Advance care planning involves continuous communication of end-of-life care goals involving an individual's medical treatment preferences. However, its uptake among older adults remains low. DESIGN: The meta-synthesis was conducted according to the Enhancing Transparency in Reporting the Synthesis of Qualitative research (ENTREQ) guidelines and thematic synthesis was employed to synthesise the qualitative findings in an inductive manner. DATA SOURCE: A search was completed on six electronic databases (PubMed, EMBASE, CINAHL, PsycINFO, Web of Science, Scopus), for publications from 1 January 2000 to 4 December 2021. REVIEW METHOD: The certainty of the evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation and Confidence (GRADE-CERQual) in the Evidence from Reviews of Qualitative research. Two independent reviewers conducted this process, and disagreements were resolved through discussions. RESULTS: Fourteen studies were analysed. Four major themes and eleven subthemes emerged from the thematic synthesis: (1) psychosocial preparedness, (2) medical preparedness, (3) psychological barriers towards advance care planning and (4) extrinsic barriers towards advance care planning. DISCUSSION: These themes consolidated older adults' views of advance care planning and how engagement in this planning affected their end-of-life preparedness. CONCLUSION: This review suggested psychological and extrinsic factors were barriers to the uptake of advance care planning and provided directions for future research to achieve a holistic understanding of the impact of advance care planning on end-of-life preparedness. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals could maintain close communication with older adults and families periodically to evaluate their readiness to discuss advance care planning to improve their preparedness. Healthcare professionals could also provide psychological support during the discussion of clinical decision-making to enhance readiness and confidence among older adults and their families.

The Association of Chinese Ethnicity and Language Preference with Advance Directive Completion Among Older Patients in an Integrated Health System.

BACKGROUND: Little is known about possible differences in advance directive completion (ADC) based on ethnicity and language preference among Chinese Americans on a regional level. OBJECTIVE: To understand the association of ethnicity and language preference with ADC among Chinese Americans. DESIGN: Retrospective cohort analysis with direct standardization. PARTICIPANTS: A total of 31,498 Chinese and 502,991 non-Hispanic White members enrolled in Kaiser Permanente Northern California during the entire study period between 2013 and 2017 who were 55 or older as of January 1, 2018. MAIN MEASURES: We compared the proportion of ADC among non-Hispanic White and Chinese patients, and also analyzed the rates according to language preference within the Chinese population. We calculated ADC rates with direct standardization using covariates previously found in literature to be significant predictors of ADC such as age and utilization. KEY RESULTS: Among Chinese members, 60% preferred English, 16% preferred another language without needing an interpreter, and 23% needed an interpreter. After standardizing for age and utilization, non-Hispanic Whites were more than twice as likely to have ADC as Chinese members (20.6% (95% confidence interval (CI): 20.5-20.7%) vs. 10.0% (95% CI: 9.6-10.3%), respectively). Among Chinese members, there was an inverse association between preference for a language other than English and ADC (13.3% (95% CI: 12.8-13.8%) if preferring English, 6.1% (95% CI: 5.4-6.7%) if preferring non-English language but not needing an interpreter, and 5.1% (95% CI: 4.6-5.6%) if preferring non-English language and needing an interpreter). CONCLUSIONS: Chinese members are less likely to have ADC relative to non-Hispanic White members, and those preferring a language other than English are most affected. Further studies can assess reasons for lower ADC among Chinese members, differences in other Asian American populations, and interventions to reduce differences among Chinese members especially among those preferring a language other than English.

Advance Care Planning in Serious Illness: A Narrative Review.

CONTEXT: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility. OBJECTIVE: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness. METHODS: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. RESULTS: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. CONCLUSIONS: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

If not home, where? Implementing an innovative model of care as an alternative place of care & death for patients living in an area of high socio-economic deprivation. Short-report on opening a long-term palliative care unit.

BACKGROUND: Healthcare professionals and policy makers often view home as the most appropriate place of care and death for patients. However, this makes assumptions about what home is like and does not account for high levels of complexity experienced by patients from areas of high socioeconomic deprivation. Alternative models of care should be explored to provide equitable care for this patient group. AIMS: To describe the development of a new innovative model of care, a long-term palliative care unit. DESIGN: Description of the model, with secondary analysis of retrospective routinely gathered data. SETTING: Hartlepool in North-East England, includes some of the most socio-economically deprived areas in England, with associated high-levels of multimorbidity. In 2014, the eight-bedded hospice, opened an additional 10-bedded long-term unit. RESULTS: Within 7 years, 199 patients were admitted to the long-term unit. With 98% remained there until death. All patients were offered a full holistic assessment and advance care planning, with 24/7 access to specialist palliative care support. None were transferred to hospital. In general, patients from socio-economically deprived areas are less likely to access hospice care, however, 27% of all admissions to the long-term unit were from areas in the 10% most deprived in England (with 41% admitted from areas in the poorest quintile). CONCLUSION: We suggest that this model has been a valuable asset in providing an alternative place to home, enabling patients to receive high-quality care towards end of life. Further research is needed to hear directly from patients about their experiences.