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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: An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits. Aim: To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons. Design: Scoping review following Arksey and O'Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal. Results: A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation. Conclusion: Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required. [ABSTRACT FROM AUTHOR]

Background: Variation in the provision of care and outcomes in the last months of life by cancer and non-cancer conditions is poorly understood. Aims: (1) To describe patient conditions, symptom burden, practical problems, service use and dissatisfaction with end-of-life care for older adults based on the cause of death. (2) To explore factors related to these variables focussing on the causes of death. Design: Secondary analysis of pooled data using cross-sectional mortality follow-back surveys from three studies: QUALYCARE; OPTCare Elderly; and International Access, Right, and Empowerment 1. Setting/participants: Data reported by bereaved relatives of people aged ⩾75 years who died of cancer, cardiovascular disease, respiratory disease, dementia or neurological disease. Results: The pooled dataset contained 885 responses. Overall, service use and circumstances surrounding death differed significantly across causes of death. Bereaved relatives reported symptom severity from moderate to overwhelming in over 30% of cases for all causes of death. Across all causes of death, 28%–38% of bereaved relatives reported some level of dissatisfaction with care. Patients with cardiovascular disease and dementia experienced lower symptom burden and dissatisfaction than those with cancer. The absence of a reliable key health professional was consistently associated with higher symptom burden (p = 0.002), practical problems (p = 0.001) and dissatisfaction with care (p = 0.001). Conclusions: We showed different trajectories towards death depending on cause. Improving symptom burden and satisfaction in patients at the end-of-life is challenging, and the presence of a reliable key health professional may be helpful. [ABSTRACT FROM AUTHOR]

Background: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. Aim: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. Design: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. Data sources: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. Results: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. Conclusions: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Background: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. Aim: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. Design: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. Setting/participants: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. Results: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. Conclusion: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory. [ABSTRACT FROM AUTHOR]

Background: In Austria, specialized palliative care (SPC) access is limited, with unclear referral criteria, making it challenging to identify hospitalized patients requiring SPC and determine referral timing and mortality at the palliative care unit (PCU). Methods: This retrospective cohort study analyzed patients who underwent a palliative care (PC) needs assessment between March 2016 and November 2021 and were subsequently admitted to the PCU of Austria's largest academic hospital. Demographic, clinical, and standardized referral form data were used for analysis, employing descriptive statistics and logistic regression. Results: Out of the 903 assessed patients, 19% were admitted to the PCU, primarily cancer patients (94.7%), with lung (19%) and breast cancer (13%) being most prevalent. Common referral reasons included pain (61%) and nutritional problems (46%). Despite no significant differences in referral times, most patients (78.4%) died in the PCU, with varying outcomes based on cancer type. Referral reasons like pain (OR = 2.3), nutritional problems (OR = 2.4), and end-of-life care (OR = 6.5) were significantly associated with the outcome PCU mortality. Conclusions: This study underscores Austria's SPC access imbalance and emphasizes timely PC integration across disciplines for effective advance care planning and dignified end-of-life experiences in PCUs. [ABSTRACT FROM AUTHOR]

Background: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. Objective: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. Design: Retrospective cohort study using the National Health Aging Trends Study waves 3–11. Subjects: US decedents age 65 and older with family member or close friend survey response. Main Measures: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. Key Results: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (−13.7%, −37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (− 4.9%, −29.0%)). Conclusion: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower. [ABSTRACT FROM AUTHOR]

Background:Patients suffering from incurable diseases are more likely to die in the hospital than at home. Specialized outpatient palliative care (PC) may be able to counteract this tendency. Similarly, potential benefits of telemedicine in health care were scientifically reported. The aim of this research was to compare patients receiving specialized outpatient PC plus telemedicine with those receiving standard specialized outpatient PC only. In this study, telemedicine is assumed to decrease the number of home visits and therefore should not be considered a mere add-on. Methods:This is a randomized controlled noninferiority trial. Recruitment lasted between January 2020 and October 2021. Quality of care was evaluated using the Integrated Palliative Care Outcome Scale (IPOS) at day 0, 7, and 14 after randomization. Change from day 0 to 7 was defined as the primary outcome (noninferiority margin = 4 points). This study was conducted in an urban setting in collaboration with a university hospital and a local specialized outpatient PC service. Results:A total of 196 patients were screened with 34 patients included (18 telemedicine/16 standard care). The mean change in the total score of the IPOS from day 0 to 7 amounted to −1.8 ± 3.9 (telemedicine) versus 1.2 ± 5.7 (standard care). The telemedicine group was statistically not relevantly inferior to the standard care group (t-test for noninferiority, p = 0.005). Conclusions:Although, due to COVID-19, the sample size remained rather small, our findings indicate that telemedical approaches offer a promising and equally effective option to provide specialized outpatient PC. Clinical Trial Registration Number: NCT06054048. [ABSTRACT FROM AUTHOR]

Purpose: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. Methods: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. Results: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient’s request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). Conclusion: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death. [ABSTRACT FROM AUTHOR]

Background: Despite a large burden of life-limitingillness, there exists a dearth of services of palliative care in Pakistan. International guidelines have questionable applicability in Pakistan due to the socioeconomic differences. We generated a protocol describing the process of developing comprehensive palliative care guidelines and palliative care referral pathways for primary care practitioners to adopt in Pakistan. Methods: A GRADE-ADOLOPMENT approach with modification has been employed to create guidelines for a Pakistani context. The "National Comprehensive Cancer Network Guidelines Insights: Palliative Care, Version 2.2021" was used as the source guideline. Recommendations from the source guideline were reviewed by two local palliative care specialists to either "Adopt," "Adapt" or "Exclude". The finalized recommendations were incorporated into the local palliative care guideline. Clinical diagnosis and referral pathways were made from the finalized guideline. Any gaps in management found in the pathways were filled by taking existing recommendations from other credible guidelines. Results: Twenty-seven recommendations were adopted without modification. No recommendations were deemed to be adapted and 15 were excluded. The referral care pathways created were reflective of the local guideline and included elements of initial assessment, preliminary management, reassessment, and referral. 6 additional recommendations were made. Conclusion: The described clinical practice guidelines and primary care clinical referral pathways will aid to standardize palliative care provision in Pakistan. These can be used by other resource constrained settings to develop guidelines within their own local context. [ABSTRACT FROM AUTHOR]

Aims: Since its outbreak in 2020, the COVID-19 pandemic has directly caused the premature death of millions. However, indirect consequences, such as social restrictions, have affected a far greater number. We explored the association between the spread of COVID-19 and end-of-life circumstances in the infected and non-infected population in Sweden. Methods: In this descriptive, population-based, observational study, we primarily used data from the Swedish National Registry of Palliative Care, which covers about 60% of all deaths in Sweden. We explored the association between the spread of COVID-19 and place of death, people present at death and end-of-life symptoms using regression analyses. Results: The study included 190,291 individuals who died in any region of Sweden from 1 January 2019 to 30 June 2022, of which 10,646 were COVID-19 cases. Correlated to the temporal and geographical spread of COVID-19, there was a greater proportion of individuals dying without the presence of their next-of-kin, and consequently more people dying alone, both in those with and without COVID-19. There was a similar pattern of a greater proportion of deaths taking place in nursing homes and in the individual's own home. However, we did not find substantial associations to reported symptoms, such as anxiety or confusion. Conclusions: This study shows the profound effects of the COVID-19 pandemic on end-of-life circumstances in both the infected and non-infected population in Sweden. As we prepare for future pandemics, there is a need to develop strategies to minimise the impact on non-infected individuals. [ABSTRACT FROM AUTHOR]

Background: We lack knowledge of which factors are associated with the risk of developing complex palliative care needs. The aim of this study was to investigate the associations between patient-reported health-related quality of life and subsequent referral to specialized palliative care (SPC) and hospital utilization. Methods: This was a prospective single-center cohort study. Data on patient-reported outcomes were collected through the European Organization of Research and Treatment of Cancer Questionnaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the time of diagnosis. Covariates and hospital utilization outcomes were collected from medical records. Adjusted logistic and Poisson regression were applied in the analyses. Participants were newly diagnosed with incurable gastrointestinal cancer and affiliated with a palliative care case management intervention established in a gastroenterology department. Results: Out of 397 patients with incurable gastrointestinal cancer, 170 were included in the study. Patients newly diagnosed with incurable gastrointestinal cancer experienced a substantial burden of symptoms. Pain was significantly associated with subsequent referral to SPC (OR 1.015; 95% CI 1.001–1.029). Patients with lower education levels (OR 0.210; 95% CI 0.056–0.778) and a Charlson Comorbidity Index score of 2 or more (OR 0.173; 95% CI 0.041–0.733) were less likely to be referred to SPC. Pain (IRR 1.011; 95% CI 1.005–1.018), constipation (IRR 1.009; 95% CI 1.004–1.015), and impaired overall quality of life (IRR 0.991; 95% CI 0.983–0.999) were significantly associated with increased risk of hospital admissions. Conclusion: The study indicates a need for interventions in hospital departments to identify and manage the substantial symptom burden experienced by patients, provide palliative care, and ensure timely referral to SPC. [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]

Despite clear benefit from palliative care in end-stage chronic diseases, access is often limited, and rural access largely undescribed. This study sought to determine if a palliative approach is provided to people with chronic disease in their terminal hospital admission. Multisite, retrospective medical record audit, of decedents with a primary diagnosis of chronic lung, heart, or renal failure, or multimorbidity of these conditions over 2019. Of 241 decedents, across five clinical sites, 143 (59.3%) were men, with mean age 80.47 years (SD 11.509), and diagnoses of chronic lung (n = 56, 23.2%), heart (n = 56, 23.2%), renal (n = 24, 10.0%) or multimorbidity disease (n = 105, 43.6%), and had 2.88 (3.04SD) admissions within 12 months. Outpatient chronic disease care was evident (n = 171, 73.7%), however, contact with a private physician (n = 91, 37.8%), chronic disease program (n = 61, 25.3%), or specialist nurse (n = 17, 7.1%) were less apparent. " Not-for-resuscitation " orders were common (n = 139, 57.7%), however, advance care planning (n = 71, 29.5%), preferred place of death (n = 18, 7.9%), and spiritual support (n = 18, 7.5%) were rarely documented. Referral to and input from palliative services were low (n = 74, 30.7% and n = 49, 20.3%), as was review of nonessential medications or blood tests (n = 86, 35.7%, and n = 78, 32.4%). Opioids were prescribed in 45.2% (n = 109). Hospital site and diagnosis were significantly associated with outpatient care and palliative approach (P <0.001). End-of-life planning and specialist palliative care involvement occurred infrequently for people with chronic disease who died in rural hospitals. Targeted strategies are necessary to improve care for these prevalent and high needs rural populations. [ABSTRACT FROM AUTHOR]

Despite the potential benefits and the desire for end-of-life communication, it rarely occurs in the familial context. Relatives play a significant role in the communication process; thus, it is crucial to understand the difficulties that they face. To develop and evaluate the relatives' version of the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI-r) regarding its factor structure, reliability and validity. Relatives of patients with advanced cancer were recruited in a German hospital. The factor structure of the questionnaire was explored. Construct validity was examined through correlations between the DEOLD-FI-r and measures of avoidance of cancer communication, quality of life, distress, and experienced difficulty during end-of-life discussions. Additionally, we examined the group difference between those who had and had not engaged in the conversation. About 111 relatives completed the survey (mean age 55.5 years, 52% female). The final version of the DEOLD-FI-r contained 23 items (α =.92). The exploratory factor analysis resulted in three factors explaining 74% of the variance. Each factor described another dimension of potential communication barriers in end-of-life discussions: 1) Own emotional burden, 2) Relational and patient-related difficulties, 3) Negative attitudes. Construct validity was supported by correlations consistent with our hypotheses and less reported communication difficulty by those who had already talked about the end-of-life with their relative (t (106) = 5.38, P <.001, d = 0.8). The results indicate that the DEOLD-FI-r is a valid and reliable instrument for the systematic assessment of difficulties in family end-of-life communication. By focusing on relatives, it complements the already validated patient-version. [ABSTRACT FROM AUTHOR]

Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence. To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death. The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011–2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ2-test and logistic regression. A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p < 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p < 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50–1.6). There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings. [ABSTRACT FROM AUTHOR]

Burnout is frequently a workload-related syndrome among palliative care physicians. Mandatory administrative activities contribute to this workload. The purpose of this study was to measure the amount of time involved in multiple required administrative activities and the cost of this on academic healthcare facilities. We measured all mandatory and non-mandatory activities that need to be completed by faculty and reviewed them with all Department of Palliative, Rehabilitation, and Integrative Medicine members for accuracy. Every faculty member spends annually an approximate average of 5300 minutes on administrative activities (approximately the equivalent of 29 consults plus 133 follow-ups). Using the department net average per encounter, the approximate value of these encounters is $36,936 for each faculty member (about 11 clinical days). Academic palliative care physicians are required to complete a number of administrative activities. Institutions do not keep a registry of these activities and do not accommodate for them with a reduction in the annual clinical productivity requirements. We recommend that regulatory agencies and institutions work together to better regulate this list of tasks and their frequency. [ABSTRACT FROM AUTHOR]

The place where people are cared towards the end of their life and die is a complex phenomenon, requiring a deeper understanding. Honoring preferences is critical for the delivery of high-quality care. In this umbrella review we examine and synthesize the evidence regarding preferences about place of end-of-life care and death of patients with life-threatening illnesses and their families. Following the Joanna Briggs Institute methodology, we conducted a comprehensive search for systematic reviews in PsycINFO, MEDLINE, EMBASE, CINAHL, Epistemonikos, and PROSPERO without language restrictions. The search identified 15 reviews (10 high-quality, three with meta-analysis), covering 229 nonoverlapping primary studies. Home is the most preferred place of end-of-life care for both patients (11%–89%) and family members (23%–84%). It is also the most preferred place of death (patient estimates from two meta-analyses: 51%–55%). Hospitals and hospice/palliative care facilities are preferred by substantial minorities. Reasons and factors affecting preferences include illness-related, individual, and environmental. Differences between preferred places of care and death are underexplored and the evidence remains inconclusive about changes over time. Congruence between preferred and actual place of death ranges 21%-100%, is higher in studies since 2004 and a meta-analysis shows noncancer patients are at higher risk of incongruence than cancer patients (OR 1.23, 95% CI: 1.01–1.49, I2 = 62%). These findings are a crucial starting point to address gaps and enhance strategies to align care with patient and family preferences. To accurately identify patient and family preferences is an important opportunity to change their lives positively. [ABSTRACT FROM AUTHOR]

Multiple sclerosis (MS) is an inflammatory, chronic, demyelinating, and neurodegenerative disorder of central nervous system, determined by an auto-immune dysfunction. Severe disability generally occurs in patients with progressive forms of MS that typically develop either after an earlier relapsing phase or less commonly from disease onset. Despite advances in research to slow the progression of MS, this condition remains a life-limiting disease with symptoms impacting negatively the lives of patients and caregivers. To analyze the difefrent aspects of palliative cae in patients with MS. To analyse selected literature assessing several palliative care aspects in patients with MS. People with MS have complex symptoms and different needs. These demands include how to deal with the burden of physical disability, how to organise daily life, restructuring social roles in the family and at work, keeping self-sufficiency in personal care, and preserving personal identity and community roles. An early palliative care approach aims to improve the palliative care skills and competencies of health professionals caring for the patients since the early stage of disease, including those who are actively undergoing disease-targeted therapies, rather than merely providing end-of-life care. [ABSTRACT FROM AUTHOR]

Artificial intelligence (AI) chatbot platforms are increasingly used by patients as sources of information. However, there is limited data on the performance of these platforms, especially regarding palliative care terms. We evaluated the accuracy, comprehensiveness, reliability, and readability of three AI platforms in defining and differentiating "palliative care," "supportive care," and "hospice care." We asked ChatGPT, Microsoft Bing Chat, Google Bard to define and differentiate "palliative care," "supportive care," and "hospice care" and provide three references. Outputs were randomized and assessed by six blinded palliative care physicians using 0–10 scales (10 = best) for accuracy, comprehensiveness, and reliability. Readability was assessed using Flesch Kincaid Grade Level and Flesch Reading Ease scores. The mean (SD) accuracy scores for ChatGPT, Bard, and Bing Chat were 9.1 (1.3), 8.7 (1.5), and 8.2 (1.7), respectively; for comprehensiveness, the scores for the three platforms were 8.7 (1.5), 8.1 (1.9), and 5.6 (2.0), respectively; for reliability, the scores were 6.3 (2.5), 3.2 (3.1), and 7.1 (2.4), respectively. Despite generally high accuracy, we identified some major errors (e.g., Bard stated that supportive care had "the goal of prolonging life or even achieving a cure"). We found several major omissions, particularly with Bing Chat (e.g., no mention of interdisciplinary teams in palliative care or hospice care). References were often unreliable. Readability scores did not meet recommended levels for patient educational materials. We identified important concerns regarding the accuracy, comprehensiveness, reliability, and readability of outputs from AI platforms. Further research is needed to improve their performance. [ABSTRACT FROM AUTHOR]

Palliative care (PC) integration is vital, as endorsed by the World Health Organization. Yet, Jordan, a Middle Eastern country with limited resources, faces ongoing challenges despite efforts to improve palliative and home care. Establishing a national PC strategic framework, with government and stakeholder consensus, is essential for ensuring universal access to high-quality palliative care. However, processes for achieving this, particularly in the Middle East, are underreported. This study delineates the process of developing Jordan's National Palliative and Home Care Strategic Framework, reflecting on its five-year impact. Additionally, it identifies barriers to PC progress in Jordan and offers recommendations to stakeholders. We conducted a rapid review and analyzed reports, minutes, meetings, and publications. The sequential framework development involved content and situational analysis, expert review, transparent expert consultation, multistage consensus procedures, and high-level advocacy meetings. The National Palliative and Home Care Strategic Framework encompasses six domains: 1) policy, 2) finance, 3) service delivery, 4) opioid access, 5) capacity building, and 6) information, research, monitoring, and evaluation. Government endorsement in April 2018 ignited national engagement, driving policy, service delivery, workforce development, education, training, and research progress. Nonetheless, workforce shortages, limited opioid access, and inadequate funding persist as barriers. Jordan's collaborative development of the inaugural National Palliative and Home Care Strategic Framework, endorsed by the government and stakeholders, provides a comprehensive roadmap for PC advancement. While it promises improved services, effective solutions to workforce and opioid access issues are crucial for successful implementation. [ABSTRACT FROM AUTHOR]

Aim: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options (C3 conditions). Design: Systematic review and metasynthesis. Methods: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research. Data Sources: A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English‐written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life‐limiting condition without curative treatment options. Results: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'. Conclusion: Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences. Impact: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. Reporting Method: Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework. Patient or Public Contribution: No patient or Public Contribution. [ABSTRACT FROM AUTHOR]

The projected rise in health-related suffering warrants the integration of palliative care across all health systems. For traditionally non-palliative care settings, barriers and enablers to palliative care integration remain poorly understood. This study sought to explore these barriers and enablers in the Emergency and Burn Units across two healthcare facilities in the middle belt of Ghana using qualitative description. Thirty-nine healthcare staff comprising 20 burn care staff and 19 ED staff were purposively recruited and interviewed. Interviews were transcribed following which thematic analysis was performed inductively. Two themes and six subthemes emerged from the data. The Ghanaian socio-cultural context often crippled the discussion of death and dying. Overall, there is a perceived tension between emergency/burns and end-of-life care. Opportunities however exist to improve the situation which will require more work regarding curricula improvement, providing avenues for professional development, culturally sensitive communication, and identifying strategies of engaging relatives. [ABSTRACT FROM AUTHOR]

"Do Not Resuscitate" (DNR) order is one of the challenging issues encountered in end of life care. This study aimed to determine the effect of education about DNR on the views of senior nursing students. Students, who selected elective course of palliative care and received education about DNR formed the intervention group (n = 106) while the students who did not select the lesson were in the control group (n = 107). Data were collected using a questionnaire. It revealed that the students who had education about DNR agreed with the positive statements about DNR more than the control group. Also, intervention group students had a high agreement DNR should be a part of vocational training for health professionals. It is important and necessary to focus on the special role of nurses when a DNR order is given, and nursing education raised the awareness and views about DNR according to the data from this study. [ABSTRACT FROM AUTHOR]

India is currently experiencing a demographic and epidemiological transition characterized by an aging population and an increase in chronic diseases, resulting in a greater demand for home healthcare services. Despite the critical nature and expansion of this area, home healthcare delivery in India remains under-researched. There is a dearth of information about the services, providers and organizations that offer services at home. There are various concerns in the provision of home healthcare services. These relate to accessibility and availability, information on providers, regulatory issues, standards of care, costs, safety concerns, and grievance redressal mechanisms for providers and users, which are among the topics discussed in this article. The article concludes that there is a need to recognize the "home" as a place for providing healthcare and as a "workplace" of care providers, develop standardized processes and guidelines for delivering care for different conditions at home, adopt standard human resource practices in deployment of care providers, bring transparency in the calculation of the cost of services and regulation of costs, and establish grievance redressal mechanisms for users, providers, and organizations. Further research is recommended on aspects such as user and provider perspective, training and supervision of providers, and financing, accreditation, and quality of services. [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]

Purpose: Health service use is most intensive in the final year of a person’s life, with 80% of this expenditure occurring in hospital. Close involvement of primary care services has been promoted to enhance quality end-of-life care that is appropriate to the needs of patients. However, the relationship between primary care involvement and patients’ use of hospital care is not well described. This study aims to examine primary care use in the last year of life for cancer patients and its relationship to hospital usage. Methods: Retrospective cohort study in Victoria, Australia, using linked routine care data from primary care, hospital and death certificates. Patients were included who died related to cancer between 2008 and 2017. Results: A total of 758 patients were included, of whom 88% (n = 667) visited primary care during the last 6 months (median 9.1 consultations). In the last month of life, 45% of patients were prescribed opioids, and 3% had imaging requested. Patients who received home visits (13%) or anticipatory medications (15%) had less than half the median bed days in the last 3 months (4 vs 9 days, p < 0.001, 5 vs 10 days, p = 0.001) and 1 month of life (0 vs 2 days, p = 0.002, 0 vs 3 days, p < 0.001), and reduced emergency department presentations (32% vs 46%, p = 0.006, 31% vs 47% p < 0.001) in the final month. Conclusion: This study identifies two important primary care processes—home visits and anticipatory medication—associated with reduced hospital usage and intervention at the end of life. [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]

Introduction: Patients with incurable illnesses often experience existential distress, profoundly impacting their well-being. Current medical approaches have limitations in addressing these burdens. Psilocybin, a promising psychedelic compound, may offer therapeutic benefits. This pilot survey study aimed to investigate the attitudes and openness toward psilocybin-assisted psychotherapy (PAT) among patients with incurable illnesses. The objective is to assess patients' attitudes toward PAT and identify potential barriers and concerns, including exploring the association between beliefs in psilocybin's therapeutic benefits and interest in receiving this treatment. Methods: The survey study was conducted at the Tampa General Hospital Palliative Care Outpatient office in the United States. Participants were 32 English-fluent patients, aged 18 or older, with incurable illnesses. The survey included demographic questions, a validated tool to measure existential distress, and questions about knowledge and concerns regarding psilocybin. Attitudes toward PAT and interest in its future use were assessed using Likert scale responses. Results: Among the 31 analyzed participants, 51.6% expressed interest in future psilocybin treatment, while 32.3% did not indicate interest. Belief in the psilocybin's therapeutic benefits for stress and anxiety significantly correlated with interest in use. Concerns included risk of psychosis, lack of trained providers, and potential for exploitation. No demographic factors were associated with interest or levels of distress. Conclusions: This pilot study provides insights into the attitudes and concerns toward PAT among patients with incurable illnesses. Over half of participants expressed interest. However, concerns regarding its use were identified, with patients' concern for the risk of exploitation associated with PAT as an especially novel concern documented in this patient population. This highlighted the need for further education of risks and benefits or PAT by trained clinicians and rigorous training of clinicians with the establishment of safeguards against exploitation. Further research is necessary to explore the potential benefits of PAT and related non-psilocybin psychedelic compounds in addressing existential distress among patients with incurable illnesses. [ABSTRACT FROM AUTHOR]

Objective: To examine variations in end-of-life care for breast cancer, heart failure, and dementia patients. Data and methods: Data from four Norwegian health registries were linked using a personal identification number. Longitudinal trends over 365 days and the type of care on the final day of life were analyzed using descriptive techniques and logistic regression analysis. Results: Patients with dementia were more commonly placed in nursing homes than patients in the two other groups, while patients with heart failure and breast cancer were more frequently hospitalized than the dementia patients. Breast cancer and heart failure patients had a higher likelihood of dying at home than dementia patients. The higher the number of general practitioners, the higher was the probability of home-based end-of-life care for cancer patients, while an increasing non-physician healthcare workers increased the likelihood of home-based care for the other patient groups. Conclusions: Diagnoses, individual characteristics, and service availability are all associated with the place of death in end-of-life care. The higher the availability of health care services, the higher also is the probability of ending the life at home. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to describe the implementation of integrated palliative care (PC) and the intensity of care in the last 3 months before death for patients with metastatic breast cancer. Materials and Methods We conducted a multicentric study of all adult patients with metastatic breast cancer who died over a 4-month period. Complete data were collected and checked from clinical records, including PC interventions and criteria regarding EOL care aggressiveness. Results A total of 340 decedent patients from 12 comprehensive cancer centres in France were included in the study. Sixty-five percent met the PC team with a median time of 39 days between the first intervention and death. In the last month before death, 11.5% received chemotherapy, the frequency of admission to intensive care unit was 2.4%, and 83% experienced acute hospitalization. The place of death was home for 16.7%, hospitalization for 63.3%, PC unit for 20%. Univariate and multivariate analyses showed factors independently associated with a higher frequency of chemotherapy in the last month before death: having a dependent person at home, meeting for the first time with a PC team < 30 days before death, and time between the first metastasis and death below the median. Conclusion PC team integration was frequent and late for patients with metastatic breast cancer. However, PC intervention > 30 days is associated with less chemotherapy in the last month before death. Further studies are needed to better understand how to implement a more effective mode of PC integration for patients with metastatic breast cancer. [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]

Context: Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. Methods: This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. Main Findings: Six major themes emerged: (1) concept of "a good death"—spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of "a good death" was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this "good death." Principal Conclusions: Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style. [ABSTRACT FROM AUTHOR]

Background: Interpersonal communication is a cornerstone of patient-centered care. We aimed to identify what patients with cancer and caregivers may want from communication during a public health crisis. Methods: We interviewed 15 patients (8 Veteran, 7 non-Veteran) and caregivers from regionally, racially, and ethnically diverse backgrounds across the US about serious illness care and quality of care during the COVID-19 pandemic Using an iterative, inductive and deductive process, 2 coders analyzed content associated with the code "Communication," which appeared 71 times, and identified 5 themes. Results: Participants identified as White (10), Latino/a (3), Asian (1), and Black (1). (1) Help patients and caregivers prepare for care during crisis by communicating medical information directly and proactively. (2) Explain how a crisis might influence medical recommendations and impact on recovery from illness. (3) Use key messengers to improve communication between primary teams, patients, and caregivers. (4) Include caregivers and families in communication when they cannot be physically present. (5) Foster bidirectional communication with patients and families to engage them in shared decision-making during a vulnerable time. Conclusion: Communication is critical during a public health crisis yet overwhelmed clinicians may not be able to communicate effectively. Communicating with caregivers and family, transparent and timely communication, ensuring diverse providers are on the same page, and effective listening are known gaps even before the COVID-19 pandemic. Clinicians may need quick interventions, like education about goals of care, to remind them about what seriously ill patients and their caregivers want from communication and offer patient-centered care during crises. [ABSTRACT FROM AUTHOR]

Background: Serious Illness Conversations (SICs) conducted during hospitalization can lead to meaningful patient participation in the decision-making process affecting medical management. The aim of this study is to determine if standardized documentation of a SIC within an institutionally approved EHR module during hospitalization is associated with palliative care consultation, change in code status, hospice enrollment prior to discharge, and 90-day readmissions. Methods: We conducted retrospective analyses of hospital encounters of general medicine patients at a community teaching hospital affiliated with an academic medical center from October 2018 to August 2019. Encounters with standardized documentation of a SIC were identified and matched by propensity score to control encounters without a SIC in a ratio of 1:3. We used multivariable, paired logistic regression and Cox proportional-hazards modeling to assess key outcomes. Results: Of 6853 encounters (5143 patients), 59 (.86%) encounters (59 patients) had standardized documentation of a SIC, and 58 (.85%) were matched to 167 control encounters (167 patients). Encounters with standardized documentation of a SIC had greater odds of palliative care consultation (odds ratio [OR] 60.10, 95% confidence interval [CI] 12.45-290.08, P <.01), a documented code status change (OR 8.04, 95% CI 1.54-42.05, P =.01), and discharge with hospice services (OR 35.07, 95% CI 5.80-212.08, P <.01) compared to matched controls. There was no significant association with 90-day readmissions (adjusted hazard ratio [HR].88, standard error [SE].37, P =.73). Conclusions: Standardized documentation of a SIC during hospitalization is associated with palliative care consultation, change in code status, and hospice enrollment. [ABSTRACT FROM AUTHOR]

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with a median survival of about 3 years. An ALS multidisciplinary team can provide primary palliative care and improve outcomes and quality of life for patients. Feeding tube insertion may be considered for patients with significant weight loss, or respiratory insufficiency. While radiologically inserted gastrostomy (RIG) tube placement may be an option, further studies are required to determine its best timing and appropriateness. This study's objectives were to evaluate the feasibility and outcomes of RIG tube placement in ALS patients over a 90-day follow-up period through the assessment and primary palliative care provided by the multidisciplinary team. This retrospective study reviewed the placement of 16 or 18 French RIG-tube without intubation or endoscopy for 36 ALS patients at a single center between April 2019 and December 2021. Measures included ALS Functional Rating Scale-Revised (ALSFRS-R) scores to determine the ALS stage. Demographic, clinical, procedural, and follow-up data were reviewed. Results showed that the RIG tube placement had a low rate of minor adverse events (11%) and no major procedure-related adverse events. The mean ALSFRS-R score at the time of procedure in subjects who died within 90 days was lower than of those alive beyond 90 days (P =.04). This study found that RIG-tube placement is a safe and effective way to manage dysphagia in ALS patients and highlights the importance of educating members of the multidisciplinary clinic in palliative care principles to determine the appropriateness of RIG tube placement. [ABSTRACT FROM AUTHOR]

AbstractMyoclonus is a relatively rare involuntary movement that is often observed in palliative care settings and that can cause patient distress. The purpose of this study is to investigate the occurrence of myoclonus and countermeasures against it in terminally ill patients with cancer diagnosed by palliative care specialists at Komaki City Hospital, Japan. We retrospectively reviewed patients with terminal cancer who received palliative care consultations between January 2018 and May 2019 and who were diagnosed with myoclonus by palliative care specialists, using electronic medical records. Patient demographics, time from onset of myoclonus to death, daily opioid use, countermeasures, and outcome of myoclonus were assessed. Of 360 patients examined during this period, 45 (12.5%) were diagnosed with myoclonus. Median age was 71 (range, 43–88) years; median time from onset of myoclonus to death was 8 days (range, 0–56); opioid usage was present in 39 patients (morphine, oxycodone, and fentanyl: n = 6, 21, and 12, respectively); and median oral morphine equivalent at onset of myoclonus was 60 mg (range, 12–336 mg). Myoclonus treatment was administered to 21 patients (opioid dose reduction, opioid switching, and others: n = 14, 3, and 4, respectively). Myoclonus is a common complication in patients with terminal cancer. [ABSTRACT FROM AUTHOR]

Objective: To explore the experiences that significantly impact the professional quality of life of people providing palliative care (PC) in Ecuador. Design: Observational cross-sectional qualitative research. Methods: In September 2022, 10 focus groups were carried out in four cities in Ecuador; each group lasted from 1 to 2 h, was audio recorded, and transcribed verbatim. Recruitment was conducted through convenience sampling, and a total of 71 individuals (15 students, 50 professionals, and 6 volunteers) linked to PC participated. Content analysis with a phenomenological and inductive approach was used to analyze the data. Results: People recognized their experiences in PC as having positive and negative impacts on their professional quality of life. Experiences were mapped as affecting them at individual, relational, and contextual levels. These experiences included personal growth, opportunity to provide care, teamwork, death-related issues, inability to deal with work-related stress, social acceptance of PC, and dealing with inefficient health systems, among others. Conclusion: Despite the positive emotions that arise with caring for others, individuals working and volunteering in PC experience situations that influence their professional quality of life. Addressing these factors to increase satisfaction and ease the burden of PC work is essential. Undergraduate education, continuous professional training, and PC teams should incorporate actions to address these factors at all levels, such as teaching coping skills, fostering social support, and increasing awareness of PC. Plain language summary: How experiences shape professional quality of life in palliative care This study explored how working in palliative care impacts the professional quality of life of people providing palliative care in Ecuador. The research team conducted 10 focus groups in four cities in Ecuador with 71 participants. The results show that people's experiences impact their professional quality of life in positive and negative ways. These experiences also affect people at individual, relational, and contextual levels. This study has identified common experiences that should be addressed to increase satisfaction and ease the burden of working in palliative care. These should be considered in undergraduate education, continuous professional training, and within palliative care teams. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. Methods: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. Results: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. Conclusions: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational. [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]

AbstractBackgroundMethodResultsConclusionAdvance care planning (ACP) allows patients to define their goals and preferences. Spending more time at home and less time in the hospital, along with avoiding death in the hospital, are often considered desirable outcomes of palliative care (PC). In 2015, 36% of cancer patients died in the hospital and 13% died at home in Norway.From 2015 to 2022, this prospective controlled non-randomized intervention trial observed 144 cancer patients with or without an organized ACP conversation in primary health care and a summarizing palliative plan (ClinicalTrials.gov Identifier: NCT02170168, 23 June 2014). The patients were identified through contact with the local cancer outpatient clinic or hospital-based PC team.A total of 128 patients died during the observation period. Of these, 67 patients had an organized ACP conversation and summarizing palliative plan (intervention (I) group) and 61 had not (control (C) group). Dying in the hospital was significantly less common for patients in the I group compared to the C group (17.9% vs. 34.4%; X2 (1, n = 128) = 4.55, p = 0.033). There were no differences between the groups in terms of where they spent their time in the last 90 days of life (home, nursing home, or hospital). Most patients (62%) preferred to die at home. The observed differences between the groups regarding preferred and actual places of death did not reach statistical significance.With organized ACP conversations in primary health care and a summarizing palliative plan, cancer patients died less often in the hospital in our observational study. A structured ACP approach integrating palliative care for cancer patients into primary health care can support patients´ preferences at the end of life. [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]

Background: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. Objective: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. Methods: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016–2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. Results: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p =.077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p <.001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p <.001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p <.001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p =.041). Conclusion: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. Trial registration: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019). [ABSTRACT FROM AUTHOR]

AbstractWith increased need for palliative care and limited staffing resources, non-social workers are increasingly responsible for screening for urgent psychosocial distress. The National Consensus Project guidelines call for all palliative care team members to be competent in screening across domains. Yet, in contrast to an abundance of evidence-informed tools for palliative social work assessments, standardization for interprofessional psychosocial screening is lacking. This lack of standardized practice may lead to harmful disparities in care delivery. The purpose of this narrative review is to examine current literature on evidence-informed practices for psychosocial screening within palliative care. Google Scholar, a university Summon library search engine, and prominent palliative care journals were searched using the same phrases to locate articles for inclusion. Each article was reviewed and synthesized across common themes. Although an abundance of validated screening tools exists for outpatient oncology-specific settings, there is minimal guidance on psychosocial screening tools intended for specialty palliative care. The most oft-cited tools have been met with concern for validity across diverse palliative care populations and settings. Additional research is needed to operationalize and measure brief psychosocial screening tools that can be validated for use by interprofessional palliative care teams, a stepping-stone for increased equity in palliative care practice. [ABSTRACT FROM AUTHOR]

Background: Prompt identification and assessment of the disease are essential for reducing the death rate associated with colorectal cancer (COL). Identifying specific causal or sensitive components, such as coding RNA (cRNA) and non-coding RNAs (ncRNAs), may greatly aid in the early detection of colorectal cancer. Methods: For this purpose, we gave natural chemicals obtained from Sparassis latifolia (SLPs) either alone or in conjunction with chemotherapy (5-Fluorouracil to a mouse colorectal tumor model induced by AOM-DSS. The transcription profile of non-coding RNAs (ncRNAs) and their target hub genes was evaluated using qPCR Real-Time, and ELISA techniques. Results: MSX2, MMP7, ITIH4, and COL1A2 were identified as factors in inflammation and oxidative stress, leading to the development of COL. The hub genes listed, upstream regulatory factors such as lncRNA PVT1, NEAT1, KCNQ1OT1, SNHG16, and miR-132-3p have been discovered as biomarkers for prognosis and diagnosis of COL. The SLPs and exercise, effectively decreased the size and quantity of tumors. Conclusions: This effect may be attributed to the modulation of gene expression levels, including MSX2, MMP7, ITIH4, COL1A2, PVT1, NEAT1, KCNQ1OT1, SNHG16, and miR-132-3p. Ultimately, SLPs and exercise have the capacity to be regarded as complementing and enhancing chemotherapy treatments, owing to their efficacious components. [ABSTRACT FROM AUTHOR]

Background: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. Methods: For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. Results: We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. Conclusions: These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model. [ABSTRACT FROM AUTHOR]