The impact of palliative care on the frailty-stroke continuum: from theoretical concepts to practical aspects.

With a constant increase in prevalence and incidence worldwide, stroke remains a public health issue in the 21st century. Additionally, population aging inevitably leads to increased vulnerability in the general population, a clinical state known as frailty. While there are adequate guidelines on the treatment of stroke in the acute setting, there are a lot of gaps regarding the chronic management of stroke patients, particularly the frail ones. From the therapeutic point of view, palliative care could be the key to offering complex and individualized treatment to these frail chronic stroke patients. In the context of the heterogeneous data and incomplete therapeutic guidelines, this article provides a new and original perspective on the topic, aiming to increase awareness and understanding and improve palliative care management in stroke patients. Based on current knowledge, the authors describe a new concept called the frailty-stroke continuum and offer a detailed explanation of the intricate stroke-frailty connection in the first part. After understanding the role of palliative care in managing this kind of patients, the authors discuss the most relevant practical aspects aiming to offer an individualized framework for daily clinical practice. The novel approach consists of developing a four-step scale for characterizing frail stroke patients, with the final aim of providing personalized treatment and correctly evaluating prognosis. By pointing out the limitations of current guidelines and the challenges of new research directions, this article opens the pathway for the better evaluation of frail stroke patients, offering a better perception of patients' prognosis.

Mechanisms of end-of-life communication contributing to optimal care at the end of life: a review of reviews.

BACKGROUND: End-of-life communication is an essential component of high-quality care, but its potential mechanisms for improving care are not well understood. OBJECTIVES: To summarise the potential mechanisms by which end-of-life communication may contribute to enhanced end-of-life care in any setting. DESIGN: An overview of systematic reviews, with a narrative synthesis of results. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. DATA SOURCES: CINAHL, MEDLINE, Cochrane, SSCI and PsycINFO databases, were searched from inception to January 2024. Manual searches were also conducted. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Systematic reviews (published in English) related to end-of-life communication, where the target population was adult patients in their last year of life, relatives, caregivers and/or healthcare professionals involved in communicating with dying patients. RESULTS: We reviewed 35 eligible studies. The reviews suggest potential mechanisms of effective end-of-life communication including collaborative decision-making, tailoring communication to individuals, using effective communication strategies and incorporating communication skills into practice. The reviews also highlighted barriers related to patients, professionals and organisations. CONCLUSION: This review highlights a nuanced understanding of potential mechanisms of end-of-life communication, emphasising the need for tailored training, policy enhancements and interprofessional collaboration. It calls on healthcare professionals to reflect on their practices, advocating for co-designing a person-centred communication model that addresses patient preferences at the end of life. Importantly, in culturally diverse contexts, there is a need for a communication paradigm that embraces diversity to provide truly empathetic and effective end-of-life care. This concise roadmap may foster compassionate, dignified and effective end-of-life communication. TRIAL REGISTRATION NUMBER: Protocol registered with PROSPERO (CRD42022271433, 29 March 2022).

Hospice inpatient care models: cross-sectional inequality survey.

OBJECTIVES: Hospices provide a range of services including inpatient units (IPUs) and care in people's homes. 40 000-50 000 patients use IPUs in the UK per year. Little published data exist on IPU models. This paper explores the structure and funding of IPU across the Southwest (SW) of England (population 5.6 million), alongside impact of COVID-19. METHODS: An electronic survey of all 13 IPUs. Data collated, tabulated and compared with national commissioning guidance. RESULTS: A 92% survey response rate revealed large variation in bed availability per 250 000 of SW population: 2.5-18.2. Referrals and admissions per IPU bed per year ranged from 16 to 38.2 (or 39-127 per 100 000 population) and 21.7 (mean), respectively. There was significant workforce variability: 1.3-12.7 nurses per 7.5 hospice beds, 1.2-7.2 consultants per 20 hospice beds, varying multidisciplinary team members with many unfilled posts. National Health Service (NHS) funding ranged from 10% to 75% of total costs. During COVID-19, 4 of 12 hospices reduced bed capacity, while half described increased integration with other teams outside of the hospice. CONCLUSION: There is significant regional variability suggesting inequality in hospice bed availability per 250 000 population. There is also considerable variability in workforce, alongside the proportion of NHS funding. Such variability implies little is known about the optimal IPU model. This provides new meaningful information about the structure and funding of hospices, with further research needed to consider these differences on the impact on patient and family experiences and outcomes. The sustainability and opportunities of integration and collaboration across care settings are also paramount.

Culturally Centered Palliative Care: A Framework for Equitable Neurocritical Care.

Health disparities continue to plague racial and ethnic underserved patients in the United States. Disparities extend to the most critically ill patients, including those experiencing neurologic injury and patients at the end of life. Achieving health equity in palliative care in the neurointensive care unit requires clinicians to acknowledge and address structural racism and the social determinants of health. This article highlights racial and ethnic disparities in neurocritical care and palliative care and offers recommendations for an anti-racist approach to palliative care in the neurointensive care unit for clinicians.

Virtual Bereavement Support Program in a Children's Hospice Care Center During COVID-19 Pandemic and Beyond.

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the feedback of families who participated in the program following the death of a child or grandchild. Participants expressed high levels of satisfaction, indicating its potential as an effective approach for pediatric bereavement care beyond the pandemic.

Perspectives of Chronic Kidney Disease Patients on Readiness for Advance Care Planning at Komfo Anokye Teaching Hospital, Ghana.

This study examined the impact of advance care planning (ACP) on the quality of life for patients with chronic kidney disease (CKD) at Komfo Anokye Teaching Hospital in Ghana. It specifically investigated patients' perspectives on their readiness for ACP. Utilizing a qualitative descriptive design, one-on-one interviews were conducted with CKD patients at the renal clinic, employing a semi-structured interview guide for thematic analysis of audio data. The findings revealed a gap in understanding among CKD patients, with participants acknowledging their vulnerability to renal failure, often linked to a medical history of diabetes and hypertension. Despite recognizing potential outcomes such as dialysis dependency or death, some patients retained hope for a cure, relying on faith. The initial kidney failure diagnosis induced shock and distress, leading many patients to prefer the comfort and familiarity of home-based care, including dialysis. Meanwhile, a minority favored hospital care to protect their children from psychological trauma. Most patients deemed legal preparations unnecessary, citing limited assets or a lack of concern for posthumous estate execution. These insights emphasize the necessity for targeted education and support in ACP to enhance patient outcomes in chronic kidney disease care and end-of-life planning.

Deodorant pad for ulcerated breast cancer: safety and efficacy.

OBJECTIVES: APOLLO study, 'efficacy and safety of the deodorAnt Pad against Odour and uLceration for LOcally advanced breast cancer', aimed to assess the safety and efficacy of wearing a deodorant pad in patients with locally advanced breast cancer (LABC) with an ulceration. METHODS: Komagome Pads were previously developed by Juntendo University and Kao Corporation. In test A, a conventional pad consisting of gauze, a commercially available diaper, pad, etc and the Komagome Pad were compared over 3 days to assess their efficacy and possible improvements for short-term use. In test B, the Komagome Pad was used continuously for 1 month to evaluate its safety during long-term use. RESULTS: This study included 14 patients in test A and nine in test B. In odour evaluation using sensory testing in test A, nine patients reported more significant efficacy in odour suppression with the Komagome Pad. The odour intensity of the Komagome Pad was lower on the gas chromatography-mass spectrometry. The group with a high level of exudation reported significantly higher satisfaction with the Komagome Pad. In test B, no adverse events were observed. CONCLUSIONS: A new deodorant pad for LABC demonstrated high safety and deodorant efficacy.

Prevalence of Late-Stage Parkinson's Disease in the US Healthcare System: Insights from TriNetX.

BACKGROUND: Patients in late-stage Parkinson's disease (PDLS) are caregiver-dependent, have low quality of life, and higher healthcare costs. OBJECTIVE: To estimate the prevalence of PDLS patients in the current US healthcare system. METHODS: We downloaded the 2010-2022 data from the TriNetX Diamond claims network that consists of 92 US healthcare sites. PD was identified using standard diagnosis codes, and PDLS was identified by the usage of wheelchair dependence, personal care assistance, and/or presence of diagnoses of dementia. Age of PDLS identification and survival information were obtained and stratified by demographic and the disability subgroups. RESULTS: We identified 1,031,377 PD patients in the TriNetX database. Of these, 18.8% fitted our definition of PDLS (n = 194,297), and 10.2% met two or more late-stage criteria. Among all PDLS, the mean age of PDLS identification was 78.1 (±7.7) years, and 49% were already reported as deceased. PDLS patients were predominantly male (58.5%) with similar distribution across PDLS subgroups. The majority did not have race (71%) or ethnicity (69%) information, but for the available information >90% (n = 53,162) were White, 8.2% (n = 5121) Hispanic/Latino, 7.8% (n = 4557) Black, and <0.01% (n = 408) Asian. Of the PDLS cohort, 71.6% identified with dementia, 12.9% had personal care assistance, and 4.8% were wheelchair-bound. CONCLUSIONS: Late-stage patients are a significant part of the PD landscape in the current US healthcare system, and largely missed by traditional motor-based disability staging. It is imperative to include this population as a clinical, social, and research priority. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

Is palliative care a utopia for older patients with organ failure, dementia or frailty? A qualitative study through the prism of emergency department admission.

BACKGROUND: Nearly three out of four older people will use the emergency department (ED) during their last year of life. However, most of them do not benefit from palliative care. Providing palliative care is a real challenge for ED clinicians who are trained in acute, life-saving medicine. Our aim is to understand the ED's role in providing palliative care for this population. METHODS: We designed a qualitative study based on 1) interviews - conducted with older patients (≥ 75 years) with a palliative profile and their informal caregivers - and 2) focus groups - conducted with ED and primary care nurses and physicians. Palliative profiles were defined by the Supportive and Palliative Indicators tool (SPICT). Qualitative data was collected in French-speaking Belgium between July 2021 and July 2022. We used a constant inductive and comparative analysis. RESULTS: Five older patients with a palliative profile, four informal caregivers, 55 primary and ED caregivers participated in this study. A priori, the participants did not perceive any role for the ED in palliative care. In fact, there is widespread discomfort with caring for older patients and providing palliative care. This is explained by multiple areas of tensions. Palliative care is an approach fraught with pitfalls, i.e.: knowledge and know-how gaps, their implementation depends on patients'(co)morbidity profile and professional values, experiences and type of practice. In ED, there are constant tensions between emergency and palliative care requirements, i.e.: performance, clockwork and needs for standardised procedures versus relational care, time and diversity of palliative care projects. However, even though the ED's role in palliative care is not recognised at first sight, we highlighted four roles assumed by ED caregivers: 1) Investigator, 2) Objectifier, 3) Palliative care provider, and 4) Decision-maker on the intensity of care. A common perception among participants was that ED caregivers can assist in the early identification of patients with a palliative profile. CONCLUSIONS: Currently, there is widespread discomfort regarding ED caregivers caring for older patients and providing palliative care. Nonetheless, ED caregivers play four roles in palliative care for older patients. In the future, ED caregivers might also perform the role of early identifier.

Process of Withdrawal of Mechanical Ventilation at End of Life in the ICU: Clinician Perceptions.

BACKGROUND: Nearly one-quarter of all Americans die in the ICU. Many of their deaths are anticipated and occur following the withdrawal of mechanical ventilation (WMV). However, there are few data on which to base best practices for interdisciplinary ICU teams to conduct WMV. RESEARCH QUESTION: What are the perceptions of current WMV practices among ICU clinicians, and what are their opinions of processes that might improve the practice of WMV at end of life in the ICU? STUDY DESIGN AND METHODS: This prospective two-center observational study conducted in Boston, Massachusetts, the Observational Study of the Withdrawal of Mechanical Ventilation (OBSERVE-WMV) was designed to better understand the perspectives of clinicians and experience of patients undergoing WMV. This report focuses on analyses of qualitative data obtained from in-person surveys administered to the ICU clinicians (nurses, respiratory therapists, and physicians) caring for these patients. Surveys assessed a broad range of clinician perspectives on planning, as well as the key processes required for WMV. This analysis used independent open, inductive coding of responses to open-ended questions. Initial codes were reconciled iteratively and then organized and interpreted using a thematic analysis approach. Opinions were assessed on how WMV could be improved for individual patients and the ICU as a whole. RESULTS: Among 456 eligible clinicians, 312 in-person surveys were completed by clinicians caring for 152 patients who underwent WMV. Qualitative analyses identified two main themes characterizing high-quality WMV processes: (1) good communication (eg, mutual understanding of family preferences) between the ICU team and family; and (2) medical management (eg, planning, availability of ICU team) that minimizes patient distress. Team member support was identified as an essential process component in both themes. INTERPRETATION: Clinician perceptions of the appropriateness or success of WMV prioritize the quality of team and family communication and patient symptom management. Both are modifiable targets of interventions aimed at optimizing overall WMV.

Prevalence, trends, and specialized palliative care utilization in Taiwanese children and young adults with life-limiting conditions between 2008 and 2017: a nationwide population-based study.

BACKGROUND: Previous studies have shown a growing need for pediatric palliative care, but there is a lack of knowledge in many countries concerning prevalence of service use among children and young adults with life-limiting conditions. This study aimed to estimate (1) the annual prevalence of children and young adults with a life-limiting condition, and (2) their specialized palliative care and other healthcare utilization. METHODS: Data from the Health and Welfare Data Science Center in Taiwan were used. All children and young adults aged 0-25 years recorded in inpatient or outpatient data, and infants aged < 1 year in death data with a life-limiting condition diagnostic code from 2008 to 2017 were recruited. Poisson regression was used to estimate the crude and adjusted relative risk of prevalence of life-limiting conditions with 95% confidence intervals, adjusted for age and sex, and to evaluate the trend in prevalence of each life-limiting diagnostic groups, in specialized palliative care and other service use. RESULTS: Data contained 236,250 individuals with a life-limiting condition, of which oncological and congenital abnormalities were the most common. There was an annualized increase over 10 years in the prevalence of life-limiting conditions of 36.4%, from 45,311 cases (59.4 per 10,000 population) to 52,226 cases (81.0 per 10,000 population), with the highest prevalence in individuals aged 21-25 years. All diagnostic groups showed significant increases in prevalence (p < .001) with the exception of oncology, circulatory, and "other" group. Specialized palliative care services, including family consultation, shared care, home visits have increased in use over time (p < .001), while inpatient hospice has slightly decreased. The highest prevalence of healthcare use was for traditional Chinese medicine (237.1 per 1,000 population in 2017), but this decreased over time (p < .001). CONCLUSIONS: Due to a growing trend towards multidisciplinary care, healthcare professionals and policymakers must engage and take action to expand specialized palliative care and integrate delivery of other healthcare services. Traditional Chinese medicine having a decreasing slope, yet still the highest prevalence of use, needs further attention.

Is caregiver sleep quality an important clinical issue?

Sleep quality is directly related to general health and quality of life. Caregivers' sleep disturbances affect not only their own health, but also the optimal care of their patients, with negative consequences such as neglect and medication errors. This study was conducted prospectively in the palliative care unit. The participants were divided into two groups: the caregivers and the control group. The caregiver groups were categorized into two subgroups: family and paid caregivers. The sleep quality of the caregivers was evaluated with the Pittsburgh Sleep Quality Index (PSQI). The demographics, body mass index, educational level, the presence of chronic diseases and medications, need for spiritual support, daytime sleepiness, duration of caregiving, nighttime awakening, and tea/coffee consumption were recorded. The study included 250 caregivers (female: 74.8%, mean age: 50.6 ± 12.1) and 103 control group members. Family caregivers significantly had an advanced age, lower educational level, more chronic diseases, and medications, need for spiritual support, and longer duration of caregiving compared to the paid caregivers (p = 0.018, < 0.001, 0.001, 0.005, < 0.001, and 0.003, respectively). The total PSQI scores of caregivers were significantly higher in the FDR, family group, females, those with need of spiritual support, and tea/coffee consumption close to bedtime (p = 0.002 < 0.004. 0.026. < 0.001, and 0.022, respectively). The fact that the sleep quality of family group caregivers is worse than that of paid caregivers may prevent healthy medical service delivery. The provision of care by paid professional caregivers will improve quality of care and quality of life.

Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. METHODS: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. TRIAL REGISTRATION: The study is registered at ClinicalTrails.gov; NCT06418646.

Scope of services provided to childhood cancer patients by the Brazilian Pediatric Palliative Care Network.

Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area.

Guideline "Parkinson's disease" of the German Society of Neurology (Deutsche Gesellschaft für Neurologie): concepts of care.

INTRODUCTION: In 2023, the German Society of Neurology published a new guideline on Parkinson's disease. An important section dealt with PD care concepts, which represent a particularly dynamic field of PD research, including their implementation in clinical practice. Parkinson's disease is the second most common age-associated neurodegenerative disease. Current estimates of the number of cases in the population describe a significant increase in prevalence in Germany by 2030 with higher proportions in rural areas, which also have a lack of sufficient PD care resources. RECOMMENDATIONS: In comparison with other international guidelines, which have so far mentioned palliative care and Parkinson's nurses in particular, the German S2k guideline expands the recommended concepts of PD care to include PD day clinics, inpatient complex treatment, and PD networks. CONCLUSION: Concepts of PD care guidelines are necessary because of the complex and rapidly evolving field of PD care provision. If applied appropriately, the potential for optimized care can be exploited and both the patient burden and the economic burden can be reduced. Given that modern care concepts have so far only been applied in a few regions, it is often impossible to generate broad evidence-based data, so that the evaluation of PD care concepts is partly dependent on expert opinion.

Medical costs of Swedish nursing home residents at the end of life: a retrospective observational registry study.

BACKGROUND: There are many studies of medical costs in late life in general, but nursing home residents' needs and the costs of external medical services and interventions outside of nursing home services are less well described. METHODS: We examined the direct medical costs of nursing home residents in their last year of life, as well as limited to the period of stay in the nursing home, adjusted for age, sex, Hospital Frailty Risk Score (HFRS), and diagnosis of dementia or advanced cancer. This was an observational retrospective study of registry data from all diseased nursing home residents during the years 2015-2021 using healthcare consumption data from the Stockholm Regional Council, Sweden. T tests, Wilcoxon rank sum tests and chi-square tests were used for comparisons of groups, and generalized linear models (GLMs) were constructed for univariable and multivariable linear regressions of health cost expenditures to calculate risk ratios (RRs) with 95% confidence intervals (95% CIs). RESULTS: According to the adjusted (multivariable) models for the 38,805 studied nursing home decedents, when studying the actual period of stay in nursing homes, we found significantly greater medical costs associated with male sex (RR 1.29 (1.25-1.33), p < 0.0001) and younger age (65-79 years vs. ≥90 years: RR 1.92 (1.85-2.01), p < 0.0001). Costs were also greater for those at risk of frailty according to the Hospital Frailty Risk Score (HFRS) (intermediate risk: RR 3.63 (3.52-3.75), p < 0.0001; high risk: RR 7.84 (7.53-8.16), p < 0.0001); or with advanced cancer (RR 2.41 (2.26-2.57), p < 0.0001), while dementia was associated with lower medical costs (RR 0.54 (0.52-0.55), p < 0.0001). The figures were similar when calculating the costs for the entire last year of life (regardless of whether they were nursing home residents throughout the year). CONCLUSIONS: Despite any obvious explanatory factors, male and younger residents had higher medical costs at the end of life than women. Having a risk of frailty or a diagnosis of advanced cancer was strongly associated with higher costs, whereas a dementia diagnosis was associated with lower external, medical costs. These findings could lead us to consider reimbursement models that could be differentiated based on the observed differences.

Caregiver recruitment strategies for interventions designed to optimize transitions from hospital to home: lessons from a randomized trial.

Challenges to recruitment of family caregivers exist and are amplified when consent must occur in the context of chaotic healthcare circumstances, such as the transition from hospital to home. The onset of the COVID-19 pandemic during our randomized controlled trial provided an opportunity for a natural experiment exploring and examining different consent processes for caregiver recruitment. The purpose of this publication is to describe different recruitment processes (in-person versus virtual) and compare diversity in recruitment rates in the context of a care recipient's hospitalization. We found rates of family caregiver recruitment for in-person versus virtual were 28% and 23%, respectively (p = 0.01). Differences existed across groups with family caregivers recruited virtually being more likely to be younger, white, have greater than high school education, and not be a spouse or significant other to the care recipient, such as a child. Future work is still needed to identify the modality and timing of family caregiver recruitment to maximize rates and enhance the representativeness of the population for equitable impact.

Psychosocial and emotional management of work experience in palliative care nurses: A qualitative exploration.

BACKGROUND: Palliative care, a crucial aspect of healthcare, faces challenges in psychosocial and emotional management among nurses. With an increasing need for palliative services globally, addressing the emotional well-being of nurses becomes pivotal. AIM: To explore nurses' psychosocial and emotional work experiences in a palliative care department. The focus is on understanding the challenges, identifying coping strategies, and assessing the impact on professional and private life when facing those experiences. METHODS: A phenomenologic-hermeneutical study involving semi-structured interviews was conducted to comprehend the lived experiences of ten nurses working in a hospital's palliative care department in Spain. Hermeneutic analysis was employed to extract patterns and insights from their experiences. The COREQ checklist was used to report this study. FINDINGS: Palliative care nurses perceived insufficient preparation in emotional management, grappling with complex family interactions and unique work dynamics. They highlighted the significance of self-protection strategies, experience, clinical sessions, and external resources. Limited training in emotional resilience and challenges posed by the COVID-19 pandemic emerged as organisational barriers. Nurses expressed a desire for enhanced training and resources. CONCLUSION: The study uncovered a deficiency in the emotional preparedness of palliative care nurses, impacting their professional and personal lives. Despite positive aspects, the emotional toll necessitates attention and intervention. IMPLICATIONS FOR NURSING POLICY: Comprehensive emotional training for palliative care nurses, addressing barriers, providing resources, and acknowledging emotional labour is necessary. Reinstating paused training sessions and considering specific challenges like those posed by the pandemic are vital. Supporting nurses in their professional and private lives is crucial for sustaining quality care in palliative care departments.

Disparities in end-of-life care for minoritized racial and ethnic patients during terminal hospitalizations in New York State.

BACKGROUND: Racial and ethnic minorities often receive care at different hospitals than non-Hispanic white patients, but how hospital characteristics influence the occurrence of disparities at the end of life is unknown. The aim of this study was to determine if disparities in end-of-life care were present among minoritized patients during terminal hospitalizations, and if these disparities varied with hospital characteristics. METHODS: We identified hospitalizations where a patient died in New York State, 2016-2018. Using multilevel logistic regression, we examined whether documented end-of-life care (do-not-resuscitate status (DNR), palliative care (PC) encounter) differed by race and ethnicity, and whether these disparities differed based on receiving care in hospitals with varying characteristics (Black or Hispanic-serving hospital; teaching status; bed size; and availability of specialty palliative care). RESULTS: We identified 143,713 terminal hospitalizations in 188 hospitals. Across all hospitals, only Black patients were less likely to have a PC encounter (adjusted odds ratio (aOR) 0.83 [0.80-0.87]) or DNR status (aOR 0.91 [0.87-0.95]) when compared with non-Hispanic White patients, while Hispanic patients were more likely to have DNR status (aOR 1.07 [1.01-1.13]). In non-teaching hospitals, all minoritized groups had decreased odds of PC (aOR 0.80 [0.76-0.85] for Black, aOR 0.91 [0.85-0.98] for Hispanic, aOR 0.93 [0.88-0.98] for Others), while in teaching hospitals, only Black patients had a decreased likelihood of a PC encounter (aOR 0.88 [0.82-0.93]). Also, Black patients in a Black-serving hospitals were less likely to have DNR status (aOR 0.80 [0.73-0.87]). Disparities did not differ based on whether specialty PC was available (p = 0.27 for PC encounter, p = 0.59 for DNR status). CONCLUSION: During terminal hospitalizations, Black patients were less likely than non-Hispanic White patients to have documented end-of-life care. This disparity appears to be more pronounced in non-teaching hospitals than in teaching hospitals.