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Background Methods Results Conclusion Spouses of persons living with dementia may face heightened psychosocial distress in the years immediately before and after their partner's death. We compared the psychosocial needs of spouses of partners with dementia with spouses of partners with non‐impaired cognition nearing and after the end of life, focusing on loneliness, depression, life satisfaction, and social isolation.We used nationally representative Health and Retirement Study married couples data (2006–2018), restricting to spouses 50+ years old. We included 2098 spouses with data on loneliness and depressive symptoms 2 years before and after the partner's death. We additionally examined a subset of spouses (N = 1113) with available data on life satisfaction and social isolation 2 years before their partner's death. Cognitive status of partners was classified as non‐impaired cognition, cognitive impairment not dementia (cognitive impairment), and dementia. We used multivariable logistic regression to determine: 1) the change in loneliness and depression for spouses pre‐ and post‐partner's death, and 2) life satisfaction and social isolation 2 years before the partner's death.Spouses were on average 73 years old (SD: 10), 66% women, 7% Black, 7% Hispanic non‐White, 24% married to persons with cognitive impairment, and 19% married to partners with dementia. Before their partner's death, spouses married to partners with dementia experienced more loneliness (non‐impaired cognition: 8%, cognitive impairment: 16%, dementia: 21%, p‐value = 0.002) and depressive symptoms (non‐impaired cognition: 20%, cognitive impairment: 27%, dementia: 31%, p‐value < 0.001), and after death a similar prevalence of loneliness and depression across cognitive status. Before their partner's death, spouses of partners with dementia reported less life satisfaction (non‐impaired cognition: 74%, cognitive impairment: 68%; dementia: 64%, p‐value = 0.02) but were not more socially isolated.Results emphasize a need for clinical and policy approaches to expand support for the psychosocial needs of spouses of partners with dementia in the years before their partner's death rather than only bereavement. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions In response to a growing need for accessible, efficient, and effective palliative care services, we designed, implemented, and evaluated a novel palliative care at home (PC@H) model for people with serious illness that is centered around a community health worker, a registered nurse, and a social worker, with an advanced practice nurse and a physician for support. Our objectives were to measure the impact of receipt of PC@H on patient symptoms, quality of life, and healthcare utilization and costs.We enrolled 136 patients with serious illness in this parallel, randomized controlled trial. Our primary outcome was change in symptom burden at 6 weeks. Secondary outcomes included change in symptom burden at 3 months, change in quality of life at 6 weeks and 3 months, estimated using a group t‐test. In an exploratory aim, we examined the impact of PC@H on healthcare utilization and cost using a generalized linear model.PC@H resulted in a greater improvement in patient symptoms at 6 weeks (1.30 score improvement, n = 37) and 3 months (3.14 score improvement, n = 21) compared with controls. There were no differences in healthcare utilization and costs between the two groups. Unfortunately, due to the COVID‐19 pandemic and a loss of funding, the trial was not able to be completed as originally intended.A palliative care at home model that leverages community health workers, registered nurses, and social workers as the primary deliverers of care may result in improved patient symptoms and quality of life compared with standard care. We did not demonstrate significant differences in healthcare utilization and cost associated with receipt of PC@H, likely due to inability to reach the intended sample size and insufficient statistical power, due to elements beyond the investigators' control such as the COVID‐19 public health emergency and changes in grant funding. [ABSTRACT FROM AUTHOR]

Introduction: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home. Methods: This study had a qualitative descriptive design based on the data from open‐ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis. Results: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support. Conclusions: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home. [ABSTRACT FROM AUTHOR]

Aim: Dignity in older persons is a goal of palliative care. This study aimed to perform a process evaluation of the Swedish Dignity Care Intervention (DCI‐SWE) in municipal palliative care in Sweden, focusing on implementation, context, and mechanism of impact. Methods: This study had a process evaluation design. The Knowledge to Action framework supported the implementation of the DCI‐SWE. The intervention was used by community nurses with older persons (n = 18) in home healthcare and nursing homes. Data were collected by focus groups‐ and individual interviews with community nurses (n = 11), health care professionals (n = 5) and managers (n = 5), reflective diaries, and field notes. Results: Grasping the DCI‐SWE was challenging for some community nurses. Enhanced communication training and increased engagement from managers were requested. However, the DCI‐SWE was perceived to enhance professional pride in nursing. In terms of fidelity, dose and reach the project was not fully achieved. Regarding mechanism of impact the DCI‐SWE contributes to address older persons' loneliness and existential life issues, as it put conversations with older persons on community nurses' agenda. Conclusions: The DCI‐SWE provided opportunities to maintain older persons' dignity and quality of life. However, with refinements of design and the DCI‐SWE, the sustainability in the context may increase. [ABSTRACT FROM AUTHOR]

Background: Dietitians are central members of the multidisciplinary long‐term care (LTC) healthcare team. The overall aim of this current investigation is to gain a better understanding of dietitian involvement in LTC resident's end‐of‐life care via referrals. Methods: Retrospective chart reviews for 164 deceased residents (mean age = 88.3 ± 7.3; 61% female) in 18 LTC homes in Ontario, Canada, identified dietitian referrals and documented eating challenges recorded over 2‐week periods at four time points (i.e., 6 months, 3 months, 1 month and 2 weeks) prior to death. Nutrition care plans at the beginning of these time points were also noted. Logistic mixed effects regression models identified time‐varying predictors of dietitian referrals. Bivariate tests identified associations between nutrition orders and dietitian referrals that occurred in the last month of life. Results: Nearly three‐quarters (73%) of participants had at least one dietitian referral across the four observations. Referrals increased significantly with proximity to death; 45% of residents had a referral documented in the last 2 weeks of life. Dietitian referrals were associated with the number of eating challenges (odds ratio [OR] = 1.42, 95% confidence interval [CI] = 1.27, 1.58). Comfort‐focused nutrition care orders were significantly more common when a dietitian was referred (25%) compared with when a dietitian was not referred (12%) in the final month of life (p = 0.04). Conclusions: Our findings suggest that dietitians are involved in end‐of‐life and comfort‐focused nutrition care initiatives, yet they are not engaged consistently for this purpose. This presents a significant opportunity for dietitians to upskill and champion palliative approaches to nutrition care within the multidisciplinary LTC team. Key points: Dietitian referrals increased in prevalence in the last 2 weeks of life for residents living in Ontario long‐term care homes.Residents experienced a variety of complex eating challenges that required additional support from a dietitian.Dietitian referrals were associated with the initiation of comfort‐focused nutrition care orders.With earlier engagement, dietitians would be well positioned to champion and manage a palliative approach to care among multidisciplinary long‐term care teams. [ABSTRACT FROM AUTHOR]

Objective Methods Results Conclusions Implications for nursing practice To identify characteristics associated with an intention to complete advance directives (ADs) and end‐of‐life treatment preferences for outpatients with heart failure (HF).A cross‐sectional, analytical study. Sociodemographic and clinical data were collected from 108 patients with HF in an outpatient clinic in São Paulo, SP, Brazil. Quality of life (QoL) was assessed using the Minnesota Living with Heart Failure Questionnaire; knowledge about HF and the intention to complete ADs were assessed using a script. The relationships among variables were assessed through the chi‐square and Mann–Whitney tests, with p < 0.05 considered significant.The intention to complete ADs was significantly associated with reporting adherence to pharmacological recommendations (99% vs. 88.1%, p = 0.02), worse QoL (29.7 ± 18.2 vs. 20.9 ± 11.0; p = 0.0336), perceived knowledge about HF (89.7% vs. 63.6%, p = 0.0495), not wishing the healthcare providers would decide about treatment (27.3% vs. 2.15, p = 0.0026), and considering ADs useful (91.8% vs. 27.3%, p < 0.001). End‐of‐life treatment preferences included living as long as possible (50.5%), not being sedated (37.1%), and staying close to family and friends for as long as possible (32.0%).Characteristics associated with an intention to complete ADs and end‐of‐life treatment preferences were identified in patients with HF.These results can help facilitate patients’ completion of their ADs or activate their intention to maximize opportunities to exercise autonomy. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions Recruitment and retention are common challenges in clinical trials, particularly with older adults and their caregivers who often benefit from palliative care but have significant strain from caregiving. In recent years, there has been an expansion in home‐based palliative care programs, especially for patients with dementia. Because these programs often rely on physicians or advanced practice nurses, they are quite costly and may be difficult to staff due to workforce shortages.We created a novel program of home‐based palliative care for patients with advanced dementia and their families, which centers around a community health worker, a social worker, and a nurse. We report on challenges our trial encountered and corresponding solutions.We enrolled 30 patients and their 30 caregivers in our pilot trial of home‐based palliative care. We found two significant barriers to enrollment: (1) the electronic health record was insufficient to determine the severity of patients' dementia; and (2) rates of follow‐up survey completion were low, with completion rates at 6 months between 14 and 44%. We created an iterative training process to determine dementia severity from electronic health records and applied person‐centered approaches to improve survey completion.Electronic health records are not set up to include discrete fields for dementia severity, which makes enrollment of older adults with dementia in a clinical trial challenging. The strain of caring for a loved one with advanced dementia may also make participation in health‐services research difficult for patients and their families. Novel approaches have the potential to counteract these challenges, improve recruitment and retention, and ultimately improve care for people with dementia and their caregivers. [ABSTRACT FROM AUTHOR]

Objective: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer. Methods: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in‐depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements. Results: Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed "continuing to do the same activities as done before the disease," "difficulty accepting the situation," "avoiding to think about the disease," and "living in the short term." Accommodative strategies involved "arranging practical matters," "thinking about the future," "doing what is feasible," "engaging in new activities," "accepting the situation," "seeking distraction," "living in the short term," and "focusing on what truly matters in life." The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies. Conclusion: When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances. [ABSTRACT FROM AUTHOR]

Objectives Methods Results Conclusions Opioid availability for the palliative care of patients with advanced cancer is increasing globally. However, opioid availability remains extremely low in Japan. We investigated whether pain is appropriately controlled by low‐dose opioid prescriptions in patients with advanced cancer in Japan.A web‐based nationwide survey for caregivers from 2000 community comprehensive support care centers was performed in Japan to assess details about pain in the 30 days before patients died of end‐stage cancer. Separately, the data for opioid prescription doses and medical services in the 90 days before the death of patients with cancer were extracted from a health insurance claim database.Responses from 1034 responders were retrieved and 665 patients were included. In total, 254 patients (38.2%) complained of severe‐to‐intolerable cancer‐related pain. The median cumulative prescription dose of opioids in the 90 days before patient death was 311.0 mg by oral morphine equivalent doses. Multiple regression analyses across prefectures revealed that the proportion of patients with severe‐to‐intolerable cancer‐related pain was negatively associated with the cumulative opioid consumption expressed as morphine‐equivalent doses within 90 days before death.The very low availability of opioids for patients with end‐stage cancer could result in high rate of severe‐to‐intolerable cancer‐related pain patients. There were several limitations in this study, and the interpretations of the findings should be carefully. However, the increase in the absolute dose of opioids could improve the palliative care framework to the pain control levels of the global standard. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions End‐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.We 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 (<40, 40–49, 50–59, or ≥60) in two areas: (1) advance care planning (ACP) and palliative care; and (2) high‐intensity care at the EOL.Beneficiaries attributed to younger physicians had slightly higher proportions of billed ACP (adjusted proportions, 17.1%, 16.1%, 15.5%, and 14.0% for physicians aged <40, 40–49, 50–59, and ≥60, respectively; p‐for‐trend adjusted for multiple comparisons <0.001) and palliative care counseling or hospice use in the last 180 days of life (64.5%, 63.6%, 61.9%, and 60.8%; p‐for‐trend <0.001). Similarly, physicians' younger age was associated with slightly lower proportions of emergency department visits (57.4%, 57.0%, 57.4%, and 58.1%; p‐for‐trend <0.001), hospital admissions (51.2%, 51.1%, 51.4%, and 52.1%; p‐for‐trend <0.001), intensive care unit admissions (27.8%, 27.9%, 28.2%, and 28.3%; p‐for‐trend = 0.03), or mechanical ventilation or cardiopulmonary resuscitation (14.2, 14.9%, 15.2%, and 15.3%; p‐for‐trend <0.001) in the last 30 days of life, and in‐hospital death (20.2%, 20.6%, 21.3%, and 21.5%; p‐for‐trend <0.001).We found that differences in patterns of EOL care between beneficiaries cared for by younger and older physicians were small, and thus, not clinically meaningful. Future research is warranted to understand the factors that can influence patterns of EOL care provided by physicians, including initial and continuing medical education. [ABSTRACT FROM AUTHOR]

Objective: Low and middle income countries of Africa account for a disproportionate amount of the global health burden of cancer. Providing patients access to psychosocial oncology and palliative care through policy structures such as the National Cancer Control Plans (NCCP) is essential to improving the care provided to patients and their families. The first phase of this study sought to determine the extent to which palliative care and psychosocial oncology were integrated in NCCPs in African countries. Methods: A qualitative thematic analysis of the plans was used using Nvivo, with two‐raters coding and continuous team discussions. Data were organized into an infographic map showing the coverage of themes across African countries. Results: Fifty‐eight NCCPs and NCD plans were analyzed in the 54 countries in Africa. The findings illustrate a lack of standardization across countries' NCCPs in addressing psychosocial oncology and palliative care themes. Certain areas presented good coverage across several plans, such as barriers to access, education, awareness, and health behaviors, coordination of care, families, caregivers and community involvement, and palliative care. Other themes presented low coverage, such as doctor‐patient communication, mental health, bereavement, psychosocial care, survivorship care, and traditional medicine. Conclusions: One may consider further developing NCCP areas as they pertain to psychosocial oncology and palliative care to ensure their proper place on the policy agenda for a healthier Africa. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out‐of‐pocket spending for both FCGs and CRs.TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self‐reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out‐of‐pocket healthcare spending (e.g., deductibles and coinsurance), and health‐related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions.The study included 282 FCG–CR dyads across three U.S. states. Follow‐up over the 6‐month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56–0. 99). Total out‐of‐pocket spending was not significantly different for TPC versus control. Across both groups, mean out‐of‐pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56–0.89).This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out‐of‐pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. Clinicaltrials.gov # is NCT03339271. [ABSTRACT FROM AUTHOR]

Background: To improve the quality of palliative care, six evidence‐based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi‐structured group interviews with 43 professionals, field notes and implementation plans. Results: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. Conclusions: Improving palliative care needs a context‐specific, flexible approach, with involvement of all stakeholders. [ABSTRACT FROM AUTHOR]

Aim: This work explores the experiences and meaning attributed by parents who underwent the decision‐making process of withholding and/or withdrawing life‐sustaining treatment for their newborn. Methods: Audio‐recorded face‐to‐face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life‐sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning‐making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision‐making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty. [ABSTRACT FROM AUTHOR]

Introduction: Patients with hematologic malignancies (HMs) often face challenges in accessing palliative care (PC) and receiving quality end‐of‐life (EOL) care. We examined factors associated with referrals to tertiary PC and the effects of tertiary PC on EOL care in patients with HMs. Method: We included patients with HMs who were admitted to a university‐affiliated hospital and died during hospitalization between January 2018 and December 2021. We investigated the receipt of PC consultations, patient characteristics, and EOL care indicators. Results: Overall, 487 patients were included in the analysis, with 156 (32%) undergoing PC consultation. Sex, residence, disease status, and admission purpose were factors associated with the likelihood of PC consultation, and there has been an increasing trend in the frequency of consultations in recent cases. A higher proportion of patients who received PC completed advance statements and life‐sustaining treatment documents. Patients who received PC had lower rates of aggressive EOL care, including chemotherapy and intensive care unit admission, than those who did not receive PC. Notably, PC reduced the number of blood transfusions. Conclusion: Tertiary PC aims to reduce aggressive EOL care through patient‐centered goal‐of‐care discussions. Therefore, there is an imperative need for concerted efforts toward seamless integration of PC. [ABSTRACT FROM AUTHOR]

Objective: Osteoradionecrosis (ORN) is a well‐recognised complication of radiotherapy in the cured head and neck cancer (HNC) patients. More recently with improved survivorship in the palliative HNC group, there is an increasing population that is also burdened by radiation late effects such as ORN. Currently, there is no proven approach to manage ORN in this cohort of patients. This study reports the management and outcome of a case series of palliative care HNC patients with established ORN. Materials and Methods: The clinical records of 20 palliative care HNC patients with an established ORN diagnosis were identified and reviewed retrospectively. Results: All 20 patients were managed via a conservative approach. Medical management via PENTO (n = 4, 20%) or PENTOCLO (n = 8, 40%) was the most popular approach. All but two patients had ORN that healed (4/20, 20%), or was stabilised (14/20, 70%). The two patients with progressive ORN had a tumour diagnosis adjacent to the necrotic site. Conclusion: Medical management via PENTO/CLO provided promising results in this small cohort of palliative patients with ORN. The overall combined healing and stability of ORN status are comparable to those in the literature, though most cases are stabilised as opposed to cured. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusion Seriously ill patients rely on spiritual and existential beliefs to support coping and approach crucial treatment and healthcare decisions. Yet, we lack gold standard, validated approaches to gathering information on those spiritual beliefs. Therefore, we developed I‐SPIRIT, a spiritual needs and beliefs inventory for those with serious illness (IIR‐10‐050).In prior work to develop measure content, we interviewed a total of 74 participants: 20 patients (veterans with Stage IV cancer, CHF, COPD, ESRD), 19 caregivers, 14 chaplains, 10 social workers, 12 nurses, and 5 physicians. Using directed content analyses, we identified over 50 attributes of spiritual experience comprising five domains: overall importance of spirituality; affiliations and practices; impact on decisions; spiritual needs; and spiritual resources. We then translated these attributes into individual items with Likert response scales.In the quantitative validation of I‐SPIRIT, we administered the instrument and a battery of comparison measures to 249 seriously ill veterans. The comparison measures captured general spiritual well‐being, religious coping, and emotional functioning. Convergent and discriminant validity was examined with the FACIT‐sp (faith, meaning, and purpose), BMMRS (religious/spirituality), POMS and PHQ‐8 (emotional function), and FACT‐G (quality of life). We administered the I‐SPIRIT a week later, for test–retest reliability.Psychometric analyses yielded a final I‐SPIRIT Tool including 30 items. Results demonstrated reliability and validity and yielded a tool with three main components: Spiritual Beliefs (seven items); Spiritual Needs (nine items); and Spiritual Resources (14 items). The Spiritual Beliefs items include key practices and affiliations, and impact of beliefs on healthcare. Higher levels of Spiritual Needs were associated with higher anxiety and depression.The I‐Spirit measures relevance of spirituality, spiritual needs and spiritual resources and demonstrates validity, reliability, and acceptability for patients with serious illness. [ABSTRACT FROM AUTHOR]

Through an innovative interspecies analysis, this article explores narratives surrounding the medical treatment of humans and pet animals at the end of life among U.K. veterinary surgeons, medical practitioners, and members of the public. Contrasting the care options open to pet owners with those available to human patients, and through a thematic focus on treatments and medicines, euthanasia, and palliation, this article pays close attention to the ways that practitioners and members of the public make sense of—and express ideas about—interspecies family kinship at the end of life. We highlight the utility of interactionist approaches for understanding microsocial human‐animal kinship ties and argue that health policy and practice during end‐of‐life care should better reflect the lived reality of the multispecies family. In so doing, we highlight the significance and complexities of interspecies conversations for the development of contemporary end‐of‐life care debates. [ABSTRACT FROM AUTHOR]

Aims Context Approach Conclusion This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice.Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end‐of‐life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home‐based palliative care services.All Medical Benefit Scheme billings for after‐hours or home‐based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after‐hours and home‐visits delivered over a 12‐month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non‐palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home‐visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role‐definition, and inadequate remuneration.Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team‐based approach. Access to and integration with specialist services remains a key component of community‐based palliative care pathways. [ABSTRACT FROM AUTHOR]

Background: Returning home from the hospital for palliative‐focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. Objective: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital‐to‐home transitions for adult patients receiving palliative care and their caregiver(s). Methods: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low‐fidelity prototype testing to review CDW outputs and develop low‐fidelity prototypes of interventions. HCPs provided feedback on the viability of low‐fidelity prototypes. Results: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low‐fidelity prototype sessions to 20 HCPs. Participants in the low‐fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Conclusion: Insights gained from this codesign work will inform high‐fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital‐to‐home transitions for patients receiving a palliative approach to care. Patient or Public Contribution: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient‐ and caregiver‐centred. [ABSTRACT FROM AUTHOR]

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. [ABSTRACT FROM AUTHOR]

Background: Little is known about the end‐of‐life (EOL) experience and specialist palliative care use patterns of patients with haematological malignancies (HMs) in New Zealand. Aims: This retrospective analysis sought to examine the quality of EOL care received by people with HMs under the care of Auckland District Health Board Cancer Centre's haematology service and compare it to international data where available. Methods: One hundred consecutive adult patients with HMs who died on or before 31 December 2019 were identified. We collected information on EOL care quality indicators, including anticancer treatment use and acute healthcare utilisation in the last 30 days of life, place of death and rate and timing of specialist palliative care input. Results: During the final 14 and 30 days of life, 15% and 27% of the patients received anticancer therapy respectively. Within 30 days of death, 22% had multiple hospitalisations and 25% had an intensive care unit admission. Death occurred in an acute setting for 42% of the patients. Prior contact with hospital and/or community (hospice) specialist palliative care service was noted in 80% of the patients, and 67% had a history of hospice enrolment. Among them, 15% and 28% started their enrolment in their last 3 and 7 days of life respectively. Conclusions: The findings highlight the intensity of acute healthcare utilisation at the EOL and high rates of death in the acute setting in this population. The rate of specialist palliative care access was relatively high when compared with international experiences, with relatively fewer late referrals. [ABSTRACT FROM AUTHOR]

Progesterone (P4), commonly administered in high doses for endometrial cancer palliative management, has limitations in current delivery systems. This preliminary in vitro drug release study introduces electrospun patches to offer a new perspective on P4 delivery. The study aimed to assess the influence of the surfactant polysorbate 80 (PS80) on the release of P4 from polycaprolactone (PCL) fibers. The PS80 effects are examined to inform the fine‐tuning of the fibre generation process. Patches developed, PCL wet (with PS80) and PCL dry (without PS80), showed encapsulation efficiencies of 76% and 42%, respectively. The dose levels studied are 6.1 mg for PCL wet and 4.4 mg for PCL dry samples. Molecular studies show that higher surfactant levels improved P4‐polymer mixing, enhancing dissolution and release rates. Patches with PS80 released 66% of the drug in 17 h, while those without released only 51%. Release data best fit the Weibull model, showcasing promise for these patches in transdermal P4 delivery. This study offers a non‐invasive option compared to traditional methods and underscores the need for further research to confirm the patches' clinical effectiveness for potential use in gynecological oncology. [ABSTRACT FROM AUTHOR]

Background: National POLST guidance indicates POLST is intended for individuals at risk of life‐threatening clinical events due to serious illness. Even though this patient population includes many, but not all, nursing facility residents, there is evidence that POLST is used broadly in this setting. This study aimed to identify clinician perspectives regarding factors that influence their decision‐making about whether to use POLST with nursing facility residents and to distinguish between inappropriate and appropriate use. Methods: We conducted a descriptive qualitative study to explore the experience of nursing facility clinicians using POLST with residents and deciding who is appropriate and inappropriate for POLST. Participants were purposively sampled from multiple states using POLST. Interviews were audio‐recorded and professionally transcribed. We used rapid qualitative analysis to code data and identify themes. Results: We interviewed 28 clinicians from 14 states about how they decided whether to use POLST with nursing facility residents and to distinguish between inappropriate and appropriate use. Four themes emerged as factors driving clinician‐decision‐making POLST use: (1) belief that "everyone is appropriate"; (2) resident and family preferences; (3) resident health status; and (4) policies requiring POLST [Correction added after first online publication on 07 Feb 2024. The word "For" has been changed to "Four" in the previous sentence.]. In most cases, participants cited resident and family preferences for treatment limitations as well as prognosis and clinical assessments in determining when POLST use was appropriate. Factors influencing potentially inappropriate POLST use included nursing facility policies requiring POLST completion that preempted clinical judgments of appropriateness. Conclusions: Findings highlight the disconnect between National POLST guidance and current use of POLST in nursing facilities. Policies requiring POLST use in nursing facilities and the belief that "everyone is appropriate" may impede clinician autonomy and lead to potentially inappropriate POLST use. Given varying approaches to POLST use in nursing facilities, there is a need to refocus attention on the intended population for POLST. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this systematic review is to examine evidence‐based psychosocial intervention research aimed at family members caring for patients with cancer in the palliative period. Method: In this systematic review, randomized controlled psychosocial intervention studies for the family member caring for patients with cancer published between January 1, 2016 and July 30, 2021 were reviewed. PubMed (including MEDLINE), Cochrane, APA PsycNet, ProQuest, Science Direct, TR Index, and Wiley Online Library databases were scanned. Eight publications were identified following a database review for English language articles published from 2016 to 2021. Sample, methods, content, and outcomes of included interventions are summarized. Results: Only eight of the 4652 articles examined met the inclusion criteria. Psychosocial interventions such as mindfulness exercises, stress management, acceptance and commitment therapy, cognitive behavioral intervention, and meaning‐centered psychotherapy for cancer caregivers were applied for relatives caring for patients with cancer in the palliative period. Conclusion: Psychosocial interventions applied to family members caring for patients with cancer during the palliative period lead to improvements in depressive symptoms, stress levels, the caregiver burden, quality of life, self‐efficacy, coping skills, and awareness levels. [ABSTRACT FROM AUTHOR]

Introduction Method Findings Conclusion The compassionate communities' movement is a public health approach to end‐of‐life care that emphasises the integral role of communities in supporting and caring for dying persons and their informal carers. Although occupational therapists have well‐established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities.Data were gathered via semi‐structured interviews with nine Australian occupational therapists with experience in specialist palliative care. Interview questions were based around the British Columbia Compassionate Community Ideal framework. Key themes were derived through qualitative descriptive analysis, blending deductive, and inductive reasoning.Interviewees indicated that occupational therapists have a role in supporting compassionate communities that centres on the facilitation of networks and connections between palliative care professionals and in the promotion of informal care networks. The importance of education and awareness raising were also discussed as valuable to the development of community capacity. It was also suggested that occupational therapists have important skills to support dying persons and their caregivers to remain engaged and safe in their homes and communities, in a meaningful and sustainable way. However, many interviewees maintained a profession‐centric view on control within compassionate communities, as opposed to approaches that are community led.Findings offer early insights into the promise and potential of occupational therapists in supporting the compassionate communities' movement. However, education regarding the ethos of the compassionate communities' movement so as to facilitate a shift away from professionally oriented modes of practice may be needed to maximise success. [ABSTRACT FROM AUTHOR]

Background Aim Study Design Results Conclusions Relevance to Clinical Practice The Glasgow Coma Scale (GCS) is one of the methods that has validity for evaluating the consciousness levels of patients in the literature and is accepted by health authorities.The purpose of this study was to evaluate the inter‐rater reliability of GCS in intensive care patients receiving palliative care.A prospective cross sectional observational study. The study was conducted in a general intensive care unit with 20 beds with patients receiving palliative care. In the unit, 18 nurses worked in two shifts, day and night. Each patient's primary palliative care nurse and two additional researchers were given one minute to independently record the patient's GCS total and subscale scores. All observations were completed within 5 min as there could be significant changes in the patient's GCS score during observations.A total of 258 assessments were completed. For the GCS total scoring, a moderate agreement was found between palliative care nurses and the first researcher‐observer (49.0%) and also between palliative care nurses and the second researcher‐observer (47.7%). In addition, there was a substantial agreement between the first and second researchers (78.9%) and also between all observers (61.5%) (all p = .001).Although there was a near‐perfect agreement between the two researcher‐observers, we found only moderate agreement among all observers (palliative care nurses and two researcher‐observers) in the evaluation of GCS total and subscale scores.We found that lack of knowledge and training on the standardized use of GCS is still a problem for palliative and intensive care units. Because of the diversity of patients requiring GCS assessment in palliative care units, refresher training programs and hands‐on workshops on consciousness assessment should be organized regularly for more experienced nurses. [ABSTRACT FROM AUTHOR]

Introduction Method Findings Conclusion While Singapore is rapidly ageing and the need for palliative care services is projected to rise, there has been limited exploration of the occupations of Chinese older adults with life‐limiting conditions. This study is the third in a series of three studies aimed to address this issue. This study also sought to discuss future directions for occupational therapy practice with Chinese older adults living with life‐limiting illnesses in Singapore.The study adopted a qualitative exploratory design using focus groups. Participants were recruited using convenience and snowball sampling. Inclusion criteria were occupational therapists who had attained full registration status with the Allied Health Professionals Council in Singapore, had two or more years of practice as an occupational therapist, and had a current or recent palliative care caseload.Three focus groups with 16 participants were conducted, and three themes were constructed from the data through reflexive thematic analysis. Reflections on culture and occupations is about the impact of a collectivist culture on occupations, such as tensions new caregivers experience between keeping clients safe and respecting clients' choices. It also highlights that there will always be individual differences within any cultural group. Challenges of occupational therapy practice in palliative care describe the need for therapists to be comfortable with rest and ethical tensions participants faced with billing for sessions that mainly involved time spent conversing with clients and when clients and caregivers' goals differed. Finally, Moving forward is about the importance of having mentors and the learning needs of occupational therapists in palliative care.Occupational therapists experienced in providing services to palliative care clients in Singapore emphasised the collectivist nature of Singaporean Chinese families and contributed more information to its possible impact on occupations and occupational therapy practice and made suggestions for future practice. [ABSTRACT FROM AUTHOR]

Background Aim Methods Results Conclusion Previous research found that healthcare professionals had low preparedness for palliative care. Thus, it is necessary to explore healthcare professionals' self‐efficacy. The Swedish Self‐Efficacy in Palliative Care Scale (SEPC‐SE) evaluates readiness in communication, patient management and multidisciplinary teamwork; however, it should be tested on a larger population. Furthermore, the constructs of the SEPC‐SE should be compared to that of the original SEPC.This study aimed to evaluate the consensus between the construct validity and reliability of the SEPC and the translated and adapted SEPC‐SE. Furthermore, it aimed to describe and compare the self‐efficacy of nurses and physicians in hospitals and explore the associated factors.The nurses (n = 288) and physicians (n = 104) completed the SEPC‐SE. Factor analysis with Cronbach's alpha evaluated validity and reliability, and an analysis using the Mann‐Whitney U test compared self‐efficacy and multiple linear regression‐associated factors.The SEPC‐SE revealed three factors with high reliability. Education or experience in specialised palliative care was minor, especially for nurses. Self‐efficacy was highest in patient management (nurses, median [md] = 74.57, physicians md = 81.71, p = 0.010) and communication (nurses md = 69.88, physicians md = 77.00, p = 0.141) and lowest in multidisciplinary teamwork (nurses md = 52.44, physicians md = 62.88, p = 0.001). The strongest associations with self‐efficacy were education at work and advanced homecare experiences. In addition, there were significant associations between years in the profession, male sex, physicians and university education.The SEPC‐SE is valid and reliable for measuring self‐efficacy. Nurses had lower self‐efficacy than physicians. Physicians were associated with higher self‐efficacy and had more education and experience in palliative care settings, which may explain their levels of self‐efficacy. [ABSTRACT FROM AUTHOR]

Objective: To evaluate outcomes of education about the dementia illness trajectory and Namaste Care™ program on aged care staff's knowledge, attitudes, self‐perceived skills and competence. Methods: A convergent mixed methods research design was adopted to compare the results of quantitative and qualitative data following an education intervention. Nurses and aged care staff (n = 35) undertook 2 × 2 h training sessions over 3 days. Data were collected pre‐ and post‐intervention using three validated surveys. Qualitative data were collected through interviews and a focus group. Thematic analysis was used to generate themes. Quantitative and qualitative data were integrated and compared during interpretation and discussion of the findings. Results: Significant improvements in knowledge, attitudes and skills survey scores from already published data were confirmed by the qualitative findings in this study. Three key themes were derived from the data, comprising dementia‐related education and knowledge changes, recognising the benefits of the Namaste Care™ program, and the importance of changing practice. Conclusions: Dementia education using the Namaste Care™ program enabled staff to identify gaps in knowledge and skills within their own practice. Staff perceived that the Namaste Care™ program can be a driver for practice change including palliative care to improve quality of life for people living in the advanced stages of dementia. [ABSTRACT FROM AUTHOR]

Purpose: To explore the palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families. Also, to propose strategies to promote supportive palliative care in the rural communities of Indiana, USA. Method: We conducted qualitative interviews to gather rural caregivers' experiences of palliative care. Recruitment was done in collaboration with community partners using social media, flyers, emails, invitations, and word‐of‐mouth. A purposive sample of family caregivers was obtained. All the interviews were conducted online. The average interview was 30‐45 minutes. Data were analyzed using a thematic analysis approach. Findings: Our findings showed 6 major themes that indicated several palliative care needs and preferences of older patients and their families in rural communities that include: (1) difficulties in pain and symptom burden; (2) perceived discrimination and lack of trust; (3) longer distances to care facilities; (4) difficult conversations; (5) caregiving burden; and (6) use of telehealth in a rural palliative care context. Conclusion: Rural family caregivers experience several social inequities and disparities causing a lack of access to and low utilization of palliative care. All these disparities cause several challenges for patients and their families trying to manage serious illnesses and die in place with peace and comfort. Inadequate access and lack of resources cause pain and distress for both patients and their families. Provider education and trainings, initiating early palliative care models, integrating behavioral health in palliative care, and using culturally congruent care delivery approaches in support of community partners can improve palliative care services in rural communities. [ABSTRACT FROM AUTHOR]

Aims: To determine the Oral Health Assessment Tool (OHAT) critical score in palliative care patients and the optimal timing for predicting mortality using time‐dependent receiver operating characteristic (ROC) curves. Methods and Results: A retrospective observational study was conducted on 176 patients treated by the palliative care team of our medical center between April 2017 and March 2020. Oral health was assessed using the OHAT. Prediction accuracy was evaluated using the area under the curve (AUC) analysis, sensitivity, and specificity, using time‐dependent ROC curves. Overall survival (OS) was compared using Kaplan‐Meier curves with the log‐rank test; hazard ratios (HRs) adjusted for covariates were calculated using a Cox proportional hazard model. A OHAT score of 6 was shown to best predict 21‐day OS (AUC 0.681, sensitivity 42.2%, specificity 80.0%). The median OS was significantly shorter in patients with total OHAT scores ≥6 than in patients with scores < 6 (21 days vs. 43 days, p =.017). For individual OHAT items, the unhealthy status of the lips and tongue was associated with decreased OS (HR = 1.91; 95% confidence interval [CI], 1.19–3.05 and adjusted HR = 1.48; 95% CI, 1.00–2.20). Conclusion: Predicting disease prognosis based on patient oral health can enable clinicians to provide timely treatment. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusion The majority of patients with pancreatic adenocarcinoma (PDAC) have advanced disease at presentation, preventing treatment with curative intent. Management of these patients is often provided by surgical teams for whom there are a lack of widely accepted strategies for care. The aim of this study was to conduct a systematic review to identify key issues in patients with advanced PDAC and integrate the evidence to form a care bundle checklist for use in surgical clinics.A systematic review of the literature was performed regarding best supportive care for advanced PDAC according to the PRISMA guidelines. Interventions pertaining to supportive care were included whilst preventative and curative treatments were excluded. A narrative review was planned.Forty‐four studies were assessed and four themes were developed: (i) Pain is an undertreated symptom, requiring escalating analgesics and sometimes invasive modalities. (ii) Health‐related quality of life necessitates optimisation by involving family, carers and multi‐disciplinary teams. (iii) Malnutrition and weight loss can be mitigated with early assessment, replacement therapies and resistance exercise. (iv) Biliary and duodenal obstruction can often be relieved by endoscopic/radiological interventions with surgery rarely required.This is the first systematic review to evaluate the different types of interventions utilized during best supportive care in patients with advanced PDAC. It provides a comprehensive care bundle for surgeons that informs management of the common issues experienced by patients within a multidisciplinary environment. [ABSTRACT FROM AUTHOR]

Background: Support for health‐related quality of life (HRQOL) is an essential part of cancer care in the final stages of life, yet empirical guidance regarding HRQOL and symptom trajectories is lacking. Aim: To assess the change in HRQOL and symptom burden in the last year of life in patients with advanced cancer and its association with health care–related factors, cancer‐specific treatment, and comorbidity. Methods: A prospective, multicenter, observational study in patients with advanced cancer (eQuiPe). Three monthly questionnaires included European Organization for Research and Treatment of Cancer Quality of Life‐C30 and reported continuity of care. Multivariable mixed‐effects analysis was used to assess the association between HRQOL and health care–related factors. Results: A total of 762 deceased patients were included with a mean age of 66 (SD, 10) years and 52% were male. The most common primary tumors were lung (29%), colorectal (20%), and breast cancer (13%). Mean overall HRQOL decreased in the last 9 months of life, with the greatest decrease in the last 3 months (β –16.2). Fatigue, pain, appetite loss, dyspnea, constipation, and nausea worsened significantly in the last year of life. Multimorbidity (β –7.5) and a better reported continuity of care (β 0.7) were both significantly associated with the trajectory of HRQOL. Conclusion: Mean overall HRQOL begins to decline 9 months before death, highlighting the need for early identification and (re)assessment of different symptoms as aspects of HRQOL follow different trajectories. Multimorbidity and reported continuity of care may be associated with the trajectory of HRQOL. Longitudinal results from the eQuiPe study show that the mean health‐related quality of life begins to decline 9 months before death in patients with advanced cancer. Higher perceived continuity with care is associated with an attenuated decline in health‐related quality of life. [ABSTRACT FROM AUTHOR]

Background Aims Design Setting Results Conclusion Provision of palliative care in chronic heart failure (CHF) can support complex decision‐making, significantly improve quality of life and may lower healthcare costs.To examine whether healthcare costs differed in terminal admissions according to the adoption of a palliative approach.Retrospective review of medical records and costing data for all admissions resulting in death from CHF (July 2011 to December 2019), analysed as two groups (2011–2016 and 2016–2019) because of background changes in costings.Admissions with CHF resulting in death in an Australian tertiary referral centre.The cohort (n = 439) were elderly (median age 83.7 years, interquartile range (IQR) = 77.6–88.7 years) and mostly men (54.9%). Half (230, 52.4%) were referred to a specialist palliative care team, whereas over a third (172, 39.2%) received a palliative approach. Receiving a palliative approach was associated with a nonstatistically significant lower admission cost (AU$12 710 vs AU$15 978; P = 0.19) between 2011 and 2016 (n = 101, 38.8%) and a significantly lower cost (AU$11 319 vs AU$15 978; P < 0.01) between 2016 and 2019 (n = 71, 39.7%). Intensive care admission resulted in the single greatest additional cost at AU$14 624 (IQR = AU$4130–AU$44 197) (n = 48, 2011–2016). Median terminal admission cost was lower for patients with comfort goals of care (P < 0.01), without life‐sustaining interventions (P < 0.01) or who received a palliative approach (P < 0.01).Referral to inpatient specialist palliative care or receiving a palliative approach resulted in comparable admission costings (AU$11 621 [IQR = AU$4705–AU$32 457] and AU$11 466 [IQR = AU$4973–AU$25 614]).A palliative approach in terminal CHF admission may improve quality at the end of life and decrease costs associated with care. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Background: Evidence suggests that public, and some professional, understandings of palliative care are limited to care provided immediately before death, which contrasts palliative care's scope as care provided across a range of illness stages. Objective: To examine how clinicians manage patients' understandings of palliative care during initial consultations. Design: Initial palliative care consultations were video‐recorded and analysed using conversation analytic methods. Setting/Participants: Consultations were recorded in a specialist palliative care outpatient unit within an Australian public hospital. Participants included 20 newly referred patients and their families, and three palliative care clinicians. Results: During initial consultations, it was observed that specialist palliative care clinicians frequently managed the possibility that patients may understand palliative care as limited to care provided immediately before death. Clinicians used recurrent practices that seemed designed to pre‐empt and contradict patients' possible narrow understandings. When discussing the palliative care inpatient unit, clinicians recurrently explained inpatient care could include active treatment and referred to the possibility of being discharged. These practices contradict possible understandings that future admission to the inpatient unit would be solely for care immediately before death. Discussion: The findings demonstrate that palliative care clinicians are aware of possible narrow understandings of their discipline among members of the public. The practices identified show how clinicians pre‐emptively manage these understandings to patients newly referred to palliative care. Conclusions: These findings highlight scope for greater partnership with teams referring patients to palliative care, to assist patients in understanding the range of reasons for their referral. Patient or Public Contribution: The observational method of conversation analysis provides direct insight into matters that are relevant for patients, as raised in their consultations with clinicians. This direct evidence enables analysis of their lived experience, as it occurs, and grounds analysis in observable details of participants' conduct, rather than interpretations of subjective experiences. The patients' contributions, therefore, were to allow observation into their initial palliative care consultations. [ABSTRACT FROM AUTHOR]

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. Methods: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working‐aged adults living with advanced cancer. A semi‐structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). Findings: Eight adults (40–64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. Conclusion: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer. [ABSTRACT FROM AUTHOR]

Objectives: To describe the characteristics of, and care provided to, older people who died within 48 h of ED presentation. Methods: A descriptive retrospective cohort study of people 65 years and older presenting to two EDs in Queensland, Australia, between April 2018 and March 2019. Data from electronic medical records were collected and analysed. Results: Two hundred and ninety‐five older people who died within 48 h of ED presentation were included. Nearly all arrived by ambulance (92%, n = 272) and 36% (n = 106) were from aged care facilities. Three‐quarters (75%, n = 222) were triaged into the most urgent triage categories (i.e. Australasian Triage Scale; ATS 1/2). Fewer than half were previously independent with mobility (38%, n = 111) and activities of daily living (43%, n = 128). Sixty‐one per cent (n = 181) had a pre‐existing healthcare directive. Twenty‐two per cent (n = 66) died in ED, most commonly due to pneumonia, intracerebral haemorrhage, cardiac arrest and/or sepsis. Over half had one or more ED visits (52%, n = 154) and/or hospital admissions (52%, n = 152) 6 months prior. Conclusions: Identification of patients at end‐of‐life (EoL) is not always straightforward; consider recent reduction in independence and recent ED visits/hospital admissions. System‐based strategies that span pre‐hospital, ED and in‐patient care are recommended to facilitate EoL pathway implementation and care continuity. [ABSTRACT FROM AUTHOR]

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 person's 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. [ABSTRACT FROM AUTHOR]

For older persons with delirium at the end of life, treatment involves complex trade‐offs and highly value‐sensitive decisions. The principles of beneficence, nonmaleficence, respect for autonomy, and justice establish important parameters but lack the structure necessary to guide clinicians in the optimal management of these patients. We propose a set of ethical rules to guide therapeutics—the canons of therapy—as a toolset to help clinicians deliberate about the competing concerns involved in the management of older patients with delirium at the end of life. These canons are standards of judgment that reflect how many experienced clinicians already intuitively practice, but which are helpful to articulate and apply as basic building blocks for a relatively neglected but emerging ethics of therapy. The canons of therapy most pertinent to the care of patients with delirium at the end of life are as follows: (1) restoration, which counsels that the goal of all treatment is to restore the patient, as much as possible, to homeostatic equilibrium; (2) means‐end proportionality, which holds that every treatment should be well‐fitted to the intended goal or end; (3) discretion, which counsels that an awareness of the limits of medical knowledge and practice should guide all treatment decisions; and (4) parsimony, which maintains that only as much therapeutic force as is necessary should be used to achieve the therapeutic goal. Carefully weighed and applied, these canons of therapy may provide the ethical structure needed to help clinicians optimally navigate complex cases. [ABSTRACT FROM AUTHOR]

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might consider a "good life" with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. [ABSTRACT FROM AUTHOR]

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision‐making provisions. [ABSTRACT FROM AUTHOR]

This introduction to the special report "Facing Dementia: Clarifying End‐of‐Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age‐associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician‐patient conversations, and access to community‐based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia. [ABSTRACT FROM AUTHOR]

Objective: Managing Cancer and Living Meaningfully (CALM) is a brief, evidence‐based psychotherapy tailored for patients with advanced cancer that has not yet been implemented routinely in Dutch cancer care. The aim of this study was to assess the feasibility, acceptability, sustainability and effectiveness of CALM in different clinical settings in the Netherlands. Methods: In 2019 and 2020 a multi‐center, intervention‐only study was performed in three Dutch cancer care settings. Professionals were trained to provide CALM under supervision. Patients diagnosed with advanced cancer were included and filled out questionnaires to measure depression (Patient Health Questionnaire‐9), death anxiety (Death and Dying Distress Scale), and anxiety (hospital anxiety and depression scale‐anxiety) at baseline, 3 and 6 months. The Clinical Evaluation Questionnaire was used to assess acceptability of CALM at 3 and 6 months. Results: Sixty‐four patients (55% of the eligible patients) were included in the study and 85% of the included patients received 3 or more CALM sessions. Of the 24 trained therapists, 15 (63%) started providing CALM. Two years post‐study, CALM was provided in each center by a total of 19 therapists. On average, patients perceived CALM to be at least somewhat helpful. A significant decrease in severity of depression (p = 0.006), death anxiety (p = 0.008), and anxiety (p = 0.024) was observed over time. Conclusions: This study shows that CALM therapy is feasible, acceptable, and sustainable in three Dutch cancer care settings, although not all predefined feasibility criteria for therapists were met. CALM can be effective in decreasing feelings of depression, anxiety, and death anxiety in patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Objectives: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. Methods: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. Results: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75–2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64–1.77), end‐of‐life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end‐of‐life discussions with physician and family (OR = 1.78–1.95). Conclusions: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors. [ABSTRACT FROM AUTHOR]

Objective: Patients with incurable cancer should receive general palliative care according to their needs, as provided through collaboration between hospital departments, municipalities, and general practices and as outlined in national guidelines. However, the implementation of general palliative care in Denmark has been inadequate. This study aimed to investigate the healthcare professionals' (HCPs') perceptions on barriers to and facilitators of the implementation of the Danish National Guideline (NG) for general palliative care. Methods: This descriptive, qualitative study was guided by the Consolidated Framework for Implementation Research (CFIR). Qualitative focus group and individual interviews were conducted with 23 HCPs. The interview guide, coding, analysis, and reporting of findings were developed within the CFIR framework. Results: The main barriers to implementing NG were as follows: lack of knowledge about the NG, lack of an implementation plan, and insufficient communication and collaboration across sectors. Important facilitators were as follows: HCP motivation to meet palliative care needs, HCPs with special functions taking responsibility for incorporating NG into local guidelines, and the role of district nurses specialised in palliative care as opinion leaders providing security and continuity for the HCPs working in palliative care. Conclusions: To address the needs of patients with incurable cancer, greater efforts are required on implementing general palliative care. Although HCPs in our setting were motivated to improve NG implementation, financial resources and strategies are necessary to ensure sufficient knowledge uptake and accommodate identified barriers in order to translate the NG into practice. [ABSTRACT FROM AUTHOR]

The major populations at risk for developing pressure ulcers are older adults who have multiple risk factors that increase their vulnerability, people who are critically ill and those with spinal cord injury/disease. The reported prevalence of pressure ulcers in the United States is 2.5 million. However, this estimate is derived from acute care facilities and does not include people who are living at home or in nursing facilities. Despite the implementation of hospital and facility‐based preventive measures, the incidence of pressure ulcers has not decreased in decades. In addition to the burden of pain, infection and death, it is estimated that hospital‐acquired pressure ulcers cost the health system $26.8 billion annually with over 50% of the cost attributed to treating Stage 3 and 4 pressure injuries. Thus, it is critical to examine the literature and develop guidelines that will improve the outcomes of this complex and costly condition. This guideline update is a compendium of the best available evidence for the treatment of Pressure Ulcers published since the last update in 2015 and includes a new section based on changing demographics entitled 'Palliative wound care for seriously ill patients with pressure ulcers'. The overall goal of the Wound Healing Society Guideline project is to present clear, concise and commercial free guidelines that clinicians can use to guide care, that researchers can use to develop studies that will improve treatment and that both clinicians and researchers can use to understand the gaps in our knowledge base. [ABSTRACT FROM AUTHOR]