ObjectiveQuality indicators (QIs) are vital to appraising and improving palliative care and should reflect the needs of patients, family members, and caregivers. This scoping review describes how patients', family members' and/or caregivers' priorities, preferences, and needs are incorporated into the development of palliative care QIs.MethodsWe conducted a scoping review in accordance with the framework developed by Arksey and O'Malley and updated by Levac et al We searched MEDLINE, EMBASE, CINAHL, and PsycInfo to identify peer-reviewed literature and Google to identify grey literature. Publications from 2010 to 2025 were screened for inclusion, with relevant information from eligible studies extracted and synthesized into categories that aligned with the objectives of the review and which were developed during data synthesis.ResultsThirty-one peer-reviewed studies met inclusion criteria, along with 1 grey literature source. QI sets targeted diverse populations and settings, including cancer care (n = 6, 19.3%), disease-specific groups (n = 5, 16.1%), ambulatory and home palliative care (n = 3, 9.7%), intensive care (n = 2, 6.4%), and hospice (n = 2, 6.4%), as well as general palliative care populations (n = 31, 25.5%). Most studies (25/31, 80.6%) used multi-method, consensus-based approaches to develop QIs, typically combining literature reviews with Delphi or RAND/UCLA processes. Eleven of 31 (35.5%) studies involved patients, family members, and/or caregivers in QI development, most often as Delphi panellists in the development stage or through early-stage qualitative interviews and focus groups; 20 of the 31 (64.5%) studies reporting no engagement. The grey literature source included more extensive engagement through advisory committee participation and public consultation.ConclusionsPatients, family, and caregivers are infrequently and inconsistently involved in the development of palliative care QIs. Existing QIs may reflect clinician and system priorities more than the lived experiences of those receiving care, underscoring the need for more systematic and active engagement in future QI development.
Terminal extubation, or palliative or compassionate extubation, is a legally and ethically accepted practice in the United States where mechanical ventilation is withdrawn when ongoing life-sustaining treatment no longer aligns with a patient's stated goals of care. Nearly 42% of intensive care unit deaths involve withdrawal of such measures. Despite its legal acceptance, terminal extubation remains a nuanced decision, particularly in patients with spinal cord injury (SCI). Approximately 18,000 new traumatic SCIs occur annually in the US, with respiratory failure as the leading cause of death. While extubation protocols exist, none are specific to the SCI population. Discussions regarding goals of care may be complicated by quality-of-life concerns and potential ableist bias when physical dependence is misinterpreted as incompatible with meaningful life. We present a case-based ethical analysis of an 88-year-old male with traumatic high-level cervical SCI who requested terminal extubation following prolonged hospitalization. His course was complicated by respiratory failure requiring tracheostomy, ventilator-associated pneumonia, and persistent ventilator dependence. Psychiatric evaluation initially raised concern for depression and adjustment disorder. However, he consistently expressed a wish not to live ventilator-dependent. Over weeks and months across multiple care settings, he reaffirmed this request. After interdisciplinary evaluation confirmed decision-making capacity and with strong family support, he elected hospice care. He was extubated with palliative support and passed 48 h later. This case highlights the intersection of autonomy, capacity, and ethics in end-of-life decisions for patients with SCI and underscores the importance of ethical, patient-centered approaches when considering withdrawal of life-sustaining treatment.
ObjectiveIn addition to the limited availability of formal palliative care services, which often leads family members to assume primary caregiving roles, family members are also integral partners in the care of patients with serious illness. Empowering family caregivers is essential to strengthen their capacity to provide care; however, evidence mapping the domains of family empowerment remains limited. This review aims to identify and map the domains of family empowerment for self-management in palliative care.MethodsThis scoping review followed the Arksey and O'Malley framework and was reported in accordance with the PRISMA-ScR guidelines. Article searches were conducted in the Scopus, PubMed, ScienceDirect, and EBSCOhost databases. The included studies comprised quantitative, qualitative, and mixed-method research discussing family or caregiver empowerment in palliative care. Editorial articles, research protocols, and review articles were excluded from this review. Data were extracted using a standardized extraction table and analyzed narratively using a thematic analysis approach to identify the main domains of family empowerment in palliative care.ResultsA total of 22 studies met the inclusion criteria. Three main domains of family empowerment were identified, namely knowledge empowerment (understanding of the patient's condition, symptom management, and end-of-life preparedness), family caregiving empowerment (communication, decision-making, care planning, and social support), and psychological-emotional empowerment (caregiver mental health, self-care, and grief preparedness).ConclusionsFamily empowerment for self-management is an important and comprehensive approach in palliative care. The integration of these three empowerment domains is necessary to support the sustainability of family roles, particularly in the development of palliative care.
ObjectiveDesignation of a Medical Power of Attorney (MPOA) is a key component of advance care planning (ACP) that ensures patient preferences are honored when decision-making capacity is not present. This study aimed to quantify MPOA documentation rates and identify demographic and clinical factors associated with documentation presence.MethodsWe conducted a retrospective observational study using electronic health record data from 979 610 adult hospitalization encounters representing 459 365 unique patients within a large U.S. healthcare system from January 1, 2020, through December 31, 2021. All hospitalized patients aged ≥18 years were included. The primary outcome was MPOA documentation. Demographic and clinical variables were analyzed using multivariable logistic regression. Statistical significance was defined as P < .05.ResultsAmong 979 610 encounters, 260 752 encounters (26.6%) had documented MPOA. Male sex, White race, older age (67.0 vs 54.3 years), and unmarried status were associated with a higher MPOA documentation rate (all, P < .001). In multivariable analyses, male sex (adjusted odds ratio [AOR], 1.07; 95% CI, 1.06-1.08) and unmarried status (AOR range, 1.41-1.75) were associated with higher odds of MPOA documentation. Dementia (AOR, 1.90; 95% CI, 1.86-1.93) and malignancy (AOR, 2.22; 95% CI, 2.19-2.25) were associated with higher odds, while discharge against medical advice was associated with lower odds (AOR, 0.91; 95% CI, 0.88-0.94) of MPOA documentation.ConclusionsMPOA documentation rates were low, highlighting missed opportunities to identify alternate decision makers when a patient lacks capacity. Targeted interventions to promote surrogate decision-maker designation and documentation are needed, especially in inpatient care settings.
ObjectivesTo assess the feasibility and tolerability of continuous low-dose intravenous lidocaine infusion in patients with opioid-refractory cancer pain receiving palliative care, and to explore its potential impact on pain outcomes in real-world clinical conditions.MethodsWe conducted a multicenter, randomized, double-blind, placebo-controlled feasibility study in palliative care units to evaluate continuous intravenous lidocaine infusion in patients with opioid-refractory cancer pain. Patients were randomized to receive lidocaine (5 mg/kg/day, increased to 8 mg/kg/day if pain reduction was <30% after 24 h) or placebo for 48 h. Pain intensity was assessed using the Numeric Pain Intensity Scale, with a clinically meaningful response defined as a ≥30% reduction from baseline at 40 min. Secondary outcomes included pain evolution over time, neuropathic pain, symptom burden, and tolerability.ResultsThirty-five patients were included in the final analysis (18 lidocaine, 17 placebo). No significant difference was observed between lidocaine and placebo for the primary endpoint or for secondary pain outcomes. Reductions in pain intensity were observed in both groups. In the lidocaine group, 61% of patients required dose escalation to 8 mg/kg/day. Continuous intravenous lidocaine infusion was generally well tolerated, with mostly mild adverse events and no unexpected toxicity.ConclusionIn this multicenter feasibility study, continuous low-dose intravenous lidocaine did not demonstrate a clinically meaningful analgesic benefit over placebo. As the planned sample size was not reached, the study was underpowered. These findings highlight the challenges of randomized trials in palliative care and may inform future feasibility-oriented designs.
ObjectivesPalliative care aims to improve the quality of life of people with life-threatening diseases. While this offer should address anyone in need regardless of their background, sex, and gender differences need to be considered to account for differences in symptom load and social disparities.MethodsWe conducted a retrospective analysis of 745 patients hospitalized at the Competence Center Palliative Care at the University Hospital Zurich, Switzerland, from 2019 to 2020. We examined sociodemographic and clinical factors, including symptom load, disease-related and end-of-life-related data extracted from the electronic patient record. These data were further analyzed for sex-specific differences. Statistical analyses were performed using IBM SPSS, version 31.0.ResultsWe report on 405 men and 340 women with a median age of 70 and 71 years, respectively, hospitalized on the palliative care ward with a median length of stay of >10 days for 48.6% of men and 53.2% of women, respectively. Most patients were admitted with cancer (78.7% of men, 77.1% of women). Prior to hospitalization, women were significantly more likely to live alone (P < .001) and to rely on support other than from a partner (P < .001) or homecare (P < .003), reflecting not only biological but also gender differences. While there was no difference in pain perception (P = .529), women experienced significantly more gastrointestinal symptoms than men (P < .001). Support offers did not differ between the sexes (P = .663). Both men and women were referred late in the disease trajectory, with a median of 18 days before death (CI 14.49-21.51).ConclusionsWe identified several differences between men and women regarding the experience and delivery of specialist palliative and end-of-life care. The need to optimize patient-centered end-of-life care with a clear focus on sex- and gender-specific differences remains an important task for the upcoming years and should occur early in the disease trajectory.
Objective: The setting in which death occurs significantly shapes the quality of end-of-life experiences. We aimed to understand how dying in different settings (home, hospital, or hospice or palliative care units [PCU]) influences the quality of the dying experience. Methods: We conducted a secondary analysis of decedent interview data from the Canadian Longitudinal Study on Aging, between January 2012 and March 2022. Proxies of deceased participants provided information on end-of-life experiences. We examined quality of death indicators across various locations and analyzed associations between end-of-life characteristics and the location of death. Results: Among the 1287 participants with completed decedent questionnaires, 17.2% (n = 222) of deceased participants died in hospice or PCU, 49% (n = 631) died in hospital and 22.7% (n = 292) died at home. Those who died at home died in their preferred place more frequently (89.4; standard difference (SD): 0.65), while individuals who died in PCU or hospice reported significantly lower levels of pain (81.5%; SD: 0.31). Dying in the Canadian province of Quebec (odds ratio [OR] 3.77; CI 2.28-6.37), dying of cancer (OR 6.79; CI 4.10-11.9), and having total physical impairment (OR 2.08; CI 1.41-3.08) increased the odds of dying in PCU or hospice. Conclusions: Dying in PCU or hospice may allow participants to die peacefully and have their pain under control, though dying at home aligns more closely with individual preferences, suggesting a potential compromise between quality and location of death. Regional health and social policies may influence where older individuals die.
Background Asynchronous telemedicine may support home-based pediatric palliative care (PPC) by improving access to professional guidance and reducing caregiver uncertainty. Artificial intelligence (AI) may further enhance such services by supporting triage and workflow efficiency, yet evidence on how families prioritize specific features of AI-supported telemedicine remains limited.Aim To quantify primary caregivers' (PCGs) preferences for key characteristics of an asynchronous, AI-supported telemedicine program for children receiving home-based PPC.Methods A discrete choice experiment (DCE) was conducted among PCGs of children enrolled in a tertiary PPC program. Participants completed 12 choice tasks involving trade-offs between telemedicine attributes: type of service (doctor- and nurse-supported telemedicine vs AI-supported telemedicine), response time to receive a reply from a clinician or nurse (6-48 h), and reduction in hospital visits. Preferences were analyzed using a mixed multinomial logit model.Results Thirty-one PCGs completed the survey. Participation in a telemedicine service was preferred to the opt-out alternative. Response time to clinician or nurse feedback was the dominant driver of preferences, accounting for approximately 60% of decision-making. PCGs showed a modest but statistically significant preference for doctor- and nurse-supported telemedicine. Reduction in hospital visits was not a consistent driver of choices. Predicted uptake was high but declined markedly with longer response times.Conclusion PCGs value telemedicine in PPC primarily for timely access to trusted clinicians rather than efficiency alone. AI-supported telemedicine appears more acceptable when it augments clinicians and shortens the time to human response. Responsiveness and continuity of clinician relationships should inform the design of future digital services in PPC.
Objective The benefits of palliative care (PC) education are recognized, but the effects of physicians’ attitudes, values and growing experience on end-of-life (EOL) decision-making remain unclear. This study aimed to evaluate whether graduating medical students’ EOL decision-making regarding an advanced dementia patient with critical gastrointestinal (GI) bleeding has changed after 6 years’ working experience. Methods A questionnaire presenting a case scenario of a patient with advanced dementia and critical GI bleeding, together with additional questions on attitudes and background factors, was offered to all Finnish final-year medical students in 2015 (n = 639). Respondents were asked to choose between PC and active life-prolonging procedures. The same questionnaire was sent to the previous respondents (n = 402) at the end of 2021. Results The proportion of the respondents (n = 227) choosing PC for a dementia patient increased from 37% (n = 84) in 2015 to 50% (n = 114) in 2021 ( P = .002). During the study, 60 respondents changed their option from active care (AC) to PC and 30 from PC to AC. However, attitudes behind the decisions remained largely unchanged. The respondents choosing PC prioritized patient benefit and ethics, while those choosing AC regarded physician's legal protection as more influential. Conclusion Physicians were more likely to choose PC for an advanced dementia patient after 6 years of clinical experience, though decision-making still varied. The attitudes influencing these decisions may primarily have developed during medical school. The findings underscore the importance of education on PC and ethical aspects of the EOL decision-making in dementia in all levels of medical training.
Objective To investigate the impact of a multimodal end-of-life care (MEC) model in geriatric medicine on the mental health of super elderly patients and their families. Methods A retrospective cohort study was conducted, including 68 super elderly patients and their primary caregivers who received services from a MEC system in the Department of Geriatrics of our hospital between January 2023 and June 2024 as the observation group (OG). A matched cohort of 68 patients and their caregivers receiving routine end-of-life care during the same period was selected as the control group (CG). Symptom burden scores (Edmonton Symptom Assessment System, ESAS), QOL (McGill Quality of Life Questionnaire), psychological status (HAM-A, HAM-D), well-being, and hope levels were compared between the 2 groups at baseline, after 2 weeks, and after 4 weeks of intervention. Results At both 2 and 4 weeks after intervention, patients in the OG exhibited significantly lower total ESAS scores, markedly higher overall QOL scores, and significantly reduced HAM-A and HAM-D scores compared to the CG ( P < .05). At week 4, patients in the OG demonstrated significantly higher scores on the SWLS, HHI, and MLQ compared to the CG ( P < .05). Additionally, after 4 weeks of intervention, family caregivers in the OG exhibited a significant reduction in caregiving burden and symptoms of anxiety and depression ( P < .05); end-of-life care of family caregivers was markedly higher than that of the CG ( P < .05). Positive coping strategies and psychological resilience scales scores of patients in the OG were higher than those in the CG, and negative coping strategies scores were lower than those in the CG ( P < .05). The overall incidence of adverse events was significantly lower in the OG than in the CG ( P < .05). Conclusion The MEC model in geriatric medicine alleviates symptom burden, enhances QOL, reduces caregiver burden, and minimizes the incidence of adverse events.
ObjectiveThis study aimed to identify who initiated end-of-life discussions (EOLD) and to examine how the timing and initiator of these discussions are associated with bereaved family members' understanding and fulfilling of patients' medical and care-related hopes and wishes.MethodThis retrospective cross-sectional study analyzed anonymous self-administered questionnaires completed by bereaved family members of patients with cancer in Japanese palliative care units. The survey included items on the occurrence, depth, timing, and initiator of EOLDs, as well as family-reported understanding and fulfilling of the patient's medical and care-related hopes and wishes. Two-way analysis of variance was conducted to examine the main effects and interaction between timing and initiator.ResultsOf 995 distributed questionnaires, 523 valid responses (52.6%) were obtained. Among 507 respondents included in the primary analysis, 26.6% reported fully understanding the patient's hopes and wishes. EOLDs were most frequently initiated during cancer treatment, with 41.3% initiated by healthcare providers. No significant interaction was observed for family-reported understanding. In contrast, a significant interaction between timing and initiator of EOLD was observed for fulfilling patients' hopes and wishes (partial η2 = 0.03). In particular, healthcare provider-initiated EOLDs were associated with higher fulfilling scores when conducted early.DiscussionThe timing and initiator of EOLDs were associated with bereaved family members' reports of fulfilling of patients' hopes and wishes, although the effect sizes were modest. These findings suggest that earlier EOLDs-particularly when initiated by healthcare providers-may be associated with better outcomes in terms of fulfilling patients' hopes and wishes. Both the timing and initiator of EOLD should be considered to support effective EOLD.
ObjectiveThe prevalence of children needing palliative or end-of-life care is increasing. However, no comprehensive tool exists to assess the experiences of such care. We describe the development and testing of VOICES-Children (VOICES-C): the first questionnaire to assess care experiences of palliative and end-of-life services for children aged 0 to 18 years in the last 3 months of life.MethodsVOICES-Children was developed in 3 phases: (1) a literature review of care quality domains, parent interviews, healthcare professional (HCP) focus-groups/interviews, data integration, and prototype development; (2) prototype testing through HCP and parent interviews; and (3) completion of VOICES-C. In phase 1, 24 parents were interviewed, 38 HCPs (critical care nurses, physicians, palliative care staff, and specialist palliative care service staff) participated in focus groups, and 3 took part in an interview. Participants were recruited from 2 neonatal intensive care units, 2 pediatric intensive care units, 1 cardiac intensive care unit, and a children's specialist palliative care service. In phase 2, 10 HCPs and 14 parents were interviewed.ResultsData integration identified 19 meta-themes, including the importance of space, and the timing and amount of information. Testing demonstrated that VOICES-C captured parent experiences effectively. The final questionnaire comprised 83 questions about home care, the pediatric setting, and experiences of the last 2 days of life.ConclusionsVOICES-Children uses literature, experience data, and parental insights to produce a robust questionnaire of pediatric end-of-life care experience, administered postbereavement, that can be applied across healthcare settings. By assessing quality, services can be improved and inequities in delivery reduced.
ObjectiveWhen caring for patients with life-threatening disease, the family caregivers' life and health are affected. This study aimed to culturally adapt and validate the content of the Carer Support Needs Assessment Tool (CSNAT) and to identify support needs in family caregivers of patients receiving home-based palliative care in Chile.MethodsThis cross-sectional study was conducted between May and December 2023 in two Chilean healthcare institutions. It involved three phases: (a) translation/adaptation of the Spanish-CSNAT, (b) cultural adaptation of the CSNAT by an expert committee, and (c) caregivers pretesting CSNAT followed by interviews. Experts and caregivers evaluated the content (clarity and relevance) of the sixteen CSNAT domains. Caregivers reported their support needs and whether CSNAT should include additional needs.ResultsNine experts and thirty-six caregivers participated. The experts found linguistic issues in four domains, which were revised by the CSNAT team-UK. A large proportion of experts (67-100%) and caregivers (90-100%) reported each of the CSNAT domains as clear. The domain with the highest average relevance-score was 'looking after your own health'. Cognitive interviews with caregivers showed high acceptability of CSNAT. 'Knowing what to expect in the future' was the need caregivers most often wished more support for (77%). Emotional support, lack of free time and financial support were identified as needs not covered by CSNAT.ConclusionThe Spanish CSNAT showed good content validity for detecting support needs in family caregivers of patients receiving home-based palliative care in Chile. Therefore, we recommend its use in clinical practice and palliative care research.
ObjectivesIn frail older patients, hospital readmissions often lead to medical decisions that are not aligned with the patient's values. Advance care planning (ACP) is an essential tool for personalizing care pathways, but is rarely implemented in acute geriatric units (AGUs). This study aimed to explore geriatricians' perceptions of the feasibility of implementing ACP for patients with a high risk of mortality in AGU.MethodsThis qualitative multicenter study was conducted in 3 AGUs in northern France. Geriatricians identified patients with a high risk of mortality using the DAMAGE score and were then invited to take part in semistructured interviews, which were analyzed using an inductive thematic analysis approach, inspired by principles of grounded theory. The goal was to understand the barriers, tools, and perceptions associated with the implementation of ACPs in an acute setting.ResultsEight geriatricians took part in the study. Of the 108 patients assessed, 59 had a high risk of mortality, but no ACP had been initiated. Three main themes emerged: (1) the hospital environment was not conducive to advance planning (lack of time, acute setting, cognitive disorders); (2) caregivers lacked training in ACP, and patients had little knowledge about ACP; and (3) there was a lack of coordination between hospital and community care providers.ConclusionsStructural, organizational, and educational barriers limit ACP implementation in the AGU. A comprehensive approach is needed, incorporating training, institutional recognition, patient awareness, and better communication between hospitals and community care providers to encourage consistent decisions that meet older person's wishes.
ObjectivesTo convert the Supportive and Palliative Care Indicator Tool (SPICTTM) into Chinese, verify its content validity, and adjust it culturally using cognitive interviewing.MethodsThis study translated, culturally adapted, and validated the SPICTTM based on TRAPD model (Translation, Review, Adjudication, Pretesting, and Documentation) in a Chinese healthcare context. Three rounds of interviews were conducted with 27 health care providers using cognitive interviews between July 2024 and October 2024.ResultsThe Chinese version of SPICTTM demonstrated good comprehensiveness and understandability. It has been culturally and content-wise adapted through cognitive interviews, and most of the comprehension-related issues were effectively addressed through the addition of explanatory words; however, some of the interviewers' recommendations that needed to be quantified the indexes were not adopted.ConclusionsCognitive interviews, guided by person-centered principles, can identify areas of the original scale that require modification. Although the application of the SPICTTM is still in its early stages in China, it has laid a foundation for the supportive and palliative care practice.
Objectives This study aimed to examine the clinical progression of Stage 2, 3, and 4 pressure ulcers (PUs) in patients receiving palliative care, and to assess the psychosocial burden and burnout levels among their primary caregivers. Additionally, it sought to identify patient- and caregiver-related factors that may influence short-term mortality. Methods A total of 96 patients with advanced-stage PUs and their 96 primary caregivers were included in a study. The Pressure Ulcer Scale for Healing (PUSH) was used to evaluate wound severity at baseline and at a 3-month follow-up. Caregiver burden and burnout were assessed using the Zarit Burden Interview and Maslach Burnout Inventory. Sociodemographic data were also collected. Logistic regression analysis was performed to determine predictors of mortality. Results At the end of the 3-month follow-up, 35 patients (36.5%) survived, showing statistically significant improvement in PUSH scores (p < .05). Patient age was positively correlated with mortality. Additionally, a significant inverse relationship was found between caregiver "personal accomplishment" scores and patient mortality (p < .05), suggesting that caregivers with lower perceived competence were associated with higher patient death rates. Conclusion PUs in palliative care are associated with high mortality and complex care demands. The results emphasize the importance of caregiver psychological well-being in influencing patient outcomes. Multidisciplinary strategies that include both clinical wound management and structured psychosocial support for caregivers are essential to improve the quality of care and survival among this vulnerable population.
ObjectiveFamily members caring for palliative care patients often experience intense emotional and psychological stress, which may lead to maladaptive coping behaviours such as emotional eating. This study aimed to examine the mediating role of psychological well-being in the relationship between meaning in life, search for meaning, and emotional eating among family caregivers.MethodData were collected from 234 participants between September and December 2023. Descriptive statistics, Pearson correlation, hierarchical regression, and Hayes' PROCESS Macro (Model 4) were used for analysis. Variables included age, gender, duration of caregiving, cohabitation status, meaning in life, search for meaning, and psychological well-being.ResultsThe mean emotional eating score of participants was 90.33 ± 34.79. Age, female gender, duration of caregiving, cohabitation status, meaning in life, search for meaning, and psychological well-being explained 77.6% of the variance in emotional eating behaviour. Psychological well-being significantly mediated the relationship between meaning in life and emotional eating. Both presence of meaning and search for meaning reduced emotional eating indirectly through enhanced psychological well-being.ConclusionRegular assessment of caregivers' emotional state and the implementation of meaning-oriented interventions that enhance psychological well-being are recommended to support healthier coping strategies. Strengthening psychological resilience and fostering meaning in life may serve as protective pathways against emotional eating in family caregivers during the palliative care process.
Objective To evaluate spatial access to inpatient hospice units across the UK by analysing travel times and population coverage at national and subnational levels.Methods A population-based spatial analysis using UK-wide data. Hospice locations were mapped, and motorised travel times to the nearest unit were estimated. Access population coverage was calculated for the following time thresholds: 30, 60, and 120 min. All 199 adult inpatient hospice units operating within the UK were included. High-resolution population data (1 km2) from the WorldPop dataset and administrative boundaries from the UK Office for National Statistics were used to estimate access for the total population.Results Median travel times varied widely: 16.4 min in England, 25.5 in Wales, 40.3 in Northern Ireland, and 70.4 in Scotland. Within a 30-min threshold, 97.6% of England's population had access compared with 78.5% in Wales, 70.3% in Scotland, and 68.5% in Northern Ireland. Even with a 60-min threshold, 15.4% of Scotland's population and 6.4% of Northern Ireland's remained without access.Conclusions This study provides the first national spatial analysis of hospice inpatient access in the UK, highlighting persistent regional inequities. Geographic accessibility analysis offers valuable insights to guide equitable service planning and should inform future policy and research.
BackgroundDelirium is a frequent and distressing complication in advanced cancer, often multifactorial and refractory to standard agents. Palliative sedation may be required when symptoms remain uncontrolled, and propofol is an emerging option in this context.Case PresentationWe describe a 61-year-old woman with Stage IV lung adenocarcinoma admitted to a hospice-type palliative care (PC) unit. She had multiple comorbidities and a history of polysubstance use, including long-term methadone and benzodiazepines. On Day 7, she developed hyperactive delirium unresponsive to escalating neuroleptics, benzodiazepines, and barbiturates, consistent with "pharmacoresistant" delirium.Management/InterventionAfter multidisciplinary review and discussion with her son, proportional PS was initiated using continuous intravenous propofol infusion. The infusion began at 60 mg/h (1.5 mg/kg/h) and gradually titrated to 320 mg/h (≈8 mg/kg/h). Concurrently, transdermal fentanyl was increased to 300 µg/h for analgesia. Sedation depth was monitored with the "Consciousness Scale for PC," with goals set at Levels 1-3 to allow intermittent interaction.OutcomesAdequate sedation was achieved within 10 min and maintained for 25 days until death, without respiratory or hemodynamic compromise. No adverse effects or signs of propofol infusion syndrome were observed, despite doses exceeding conventional thresholds.ConclusionThis case highlights the feasibility and safety of high-dose, long-term propofol infusion for refractory delirium in advanced cancer. While not routine, propofol may serve as a rescue agent when standard regimens fail, provided decisions are ethically grounded, monitoring is rigorous, and family involvement is prioritized.
Background Palliative care (PC) optimizes quality of life for individuals and their families by providing care that promotes dignity, respect, and comfort. Some groups experience inequities related to PC, including persons with mental illness, those living with dementia, linguistic minority groups, and living in rural, remote, or northern areas. There is little data on palliative needs among underserved groups in Canada.Methods We analyzed anonymized pan-Canadian population-level data on 1,451,135 home care clients. Palliative needs were defined as having a prognosis of six or fewer months to live, having palliative goals of care, or being offered or receiving hospice/palliative services. We examined the prevalence of palliative needs overall and among underserved groups, as well as whether membership in an underserved group was associated with recognition of palliative needs after controlling for other personal, social, functional, and clinical characteristics.Results Overall, 5.0% (n = 72,161) of home care clients had recognized palliative needs. Controlling for age, sex, social characteristics, functional, and clinical characteristics, persons aged 85 + years (0.85 OR), living with dementia (0.57 OR), mental illness (0.91 OR), and linguistic minorities (0.88 OR) had decreased odds of recognized palliative needs, while those living in rural areas had slightly increased odds (1.01 OR).Conclusion These findings highlight that the palliative needs of certain groups may not be recognized, and therefore they may not be receiving the care that they need. Future work on promoting earlier identification and awareness of palliative needs is needed.
