Journal of Palliative Care最新文献

Objective(s)LGBTQI+ disparities in hospice and palliative care have been vastly underrecognized in medical practice and research. This may result in LGBTQI+ community members distrusting health care professionals, avoiding encounters due to fears of discrimination or mistreatment, and seldom disclosing their identities to health care professionals. LGBTQI+ patients often lack familial emotional and caregiver support, a central theme of hospice and palliative care - for example, older LGBTQI+ people are twice as likely as cisgender heterosexual people to live alone and four times as likely to not have children. LGBTQI+ populations are also highly intersectional; therefore, members may be further stigmatized. Blue Diamond Society is a non-governmental organization in Nepal that specializes in LGBTQI+ advocacy and patient care. Our main objective in this study was to explore Nepali LGBTQI+ patients' experiences in hospice and palliative care.Methods29 interviews were conducted with patients, health care professionals, family members, and administrators involved with Blue Diamond Society (BDS), a Nepali NGO that serves Nepal's LGBTQI+ community. Questions were developed based on open-ended questioning to abstract relevant life and health history information pertaining to experiences with BDS and palliative care. These interviews were translated and transcribed verbatim. Qualitative Content analysis was conducted to identify prevalent themes.ResultsFour themes were identified: Fear of Dying without Family; Understanding Oneself and Sense of Community; Patient as Advocate; and Intersectionality and Eliminating Reductionism.ConclusionsThis study elucidated themes inherent to the experiences of LGBTQI+ Nepali people receiving palliative and hospice care, ultimately describing the unique needs of LGBTQI+ Nepali patients in palliative and hospice care settings. In doing so, this study presents an intersectional focus on palliative and hospice care, elaborating on challenges specific to a deeply marginalized community that remains underrepresented in academia. Findings from this study describe an expanded notion of "palliation" to embody "whole-person care," that is, the palliation of social and structural pain, in addition to the more traditional conceptions of palliation as purely physical, emotional, and/or spiritual. This study also identified the importance of acknowledging and affirming the intersectional marginalization at which LGBTQI+ Nepalis live, ranging from experiences with socioeconomic status, family and communal conflict, ethnicity, race, sex, gender, sexual orientation, age, and environmental resource scarcity. In further understanding and improving upon intersectional LGBTQI+ cultural humility, this study provides opportunities for further research on cross-cultural LGBTQI+ patient needs in hospice and palliative care in a variety of resource settings.

Objective: Difficulty sleeping is common in palliative care, however often unrecognized by palliative care physicians. This retrospective review aims to gain a better understanding of the causes and treatment of sleeping disturbances in a tertiary palliative care unit. Methods: This study included 200 palliative care inpatients admitted between January 1, 2015, and August 31, 2020. Patients with sleep disturbances were placed into 3 subgroups: insomnia, delirium, and those with an unclear diagnosis. These categories were analyzed by bivariate analysis (ANOVA, Kruskal-Wallis) to determine statistical significance. Results: A total of 156 (78%) patients had symptoms suggestive of sleep disturbance and 163 (81.5%) patients were prescribed a sedative for sleep disturbance. Most patients were prescribed lorazepam (52 [26%]), followed by haloperidol (47 [23.5%]), and zopiclone (33 [16.5%]). Benzodiazepine and zopiclone prescribing decreased over time, while antipsychotic prescribing remained stable. When analyzed according to the most likely cause of the sleep disturbance, patients with insomnia had a higher Palliative Performance Score (P < .035) and were more likely to have a previous medical history of insomnia (P < .0003) than those with delirium. Both insomnia and delirium were quickly diagnosed but patients with unclear sleep disturbances took longer to recognize and treat. Conclusion: These results suggest that sleep disturbances are common at the end of life and can be challenging to categorize. Using specific criteria may be helpful in differentiating insomnia versus delirium and ultimately lead to more consistent approaches to management.

Impairment of medical decision-making capacity is common in acutely ill patients especially those with solid malignancies. Many of these patients lack advance directives and healthcare proxies leaving clinicians with unclear guidance on subsequent treatment decisions and few existing mechanisms to address this issue. We present a case of a 55-year-old man with recurrent oral squamous cell carcinoma who lacked decision-making capacity due to cognitive impairment. He did not have an advance directive or documented healthcare proxy. He declined curative-intent cancer-directed therapy. The dilemma of treatment over objection was carefully explored and the patient ultimately underwent palliative radiation therapy. We advocate for a multidisciplinary framework in which all potential interventions both curative and palliative including treatment over objection are thoughtfully and carefully explored. We illustrate the need for improved guidance and approaches to ensure that these patients who lack decision-making capacity have access to potentially life-saving and therapeutic interventions.

ObjectiveNecrotizing pancreatitis (NP) is a severe form of pancreatitis that often necessitates intensive care and can result in significant morbidity and mortality. This study aimed to investigate racial and gender disparities in palliative care (PC) utilization among mechanically-ventilated patients with NP.MethodsIn this retrospective analysis using the National Inpatient Sample from 2016 to 2020, we investigated 84 335 patients with NP requiring invasive mechanical ventilation, and the utilization of PC services and their disparities based on gender and race. To adjust for potential confounding factors, we employed multivariable logistic regression, ensuring that our findings account for various influencing variables and provide a robust analysis of the data.ResultsAmong the patients studied, 15.4% utilized PC consultations. Notably, female patients were 12% more likely to utilize PC than their male counterparts (OR 1.1, 95% CI: 1.003-1.2; P = .008). Racial disparities were pronounced: African Americans (OR 0.8, 95% CI 0.7-0.9, P < .001), Hispanic (OR 0.8, 95% CI 0.7-0.9, P = .001), and Asian or Pacific Islander patients (OR 0.74, 95% CI 0.57-0.97; P = .03) had significantly lower odds of utilizing PC compared to White patients. The cohort utilizing PC had a higher in-hospital mortality rate (74.7% vs 24.8%; OR 8.2, 95% CI 7.7-9.2) but a shorter mean hospital stays and lower associated costs.ConclusionsOur findings indicate significant racial and gender disparities in the utilization of PC for intubated patients with NP, with lower utilization among males and minority populations. These findings emphasize the urgent requirement for comprehensive changes in healthcare protocols.

Objective: It has been reported that chronically critical patients and patients at high risk of death have moderate to high levels of thirst distress. It was planned as a descriptive and cross-sectional study to determine thirst distress in palliative care patients. Methods: A Patient Information Form, the Thirst Severity Form, and the Thirst Distress Scale were used for data collection. The research was carried out between March 2023 and July 2023 with 157 patients hospitalized in the palliative care services of a state hospital and a training and research hospital in Istanbul, Turkey. Results: Of the patients, 51.6% were female. The mean thirst distress score of the patients was 23.96 ± 5.096. Of the patients, 0.6% had no thirst distress; 7.6% had mild, 48.4% had moderate, 38.9% had high, and 4.5% had severe thirst distress. Thirst scores of patients who were illiterate and did not smoke or drink alcohol were high (P < .05). The thirst distress score of patients fed with percutaneous endoscopic gastrostomy was higher than that of patients fed with total parenteral nutrition. There was a positive weak correlation between age and thirst distress score, a negative very weak correlation between fluid balance and thirst distress score, and a positive moderate correlation between Visual Analog Scale and thirst distress. Conclusion: Thirst distress was found to be at moderate and high levels in palliative care patients. In patients, thirst should be routinely assessed, and necessary interventions should be planned.

ObjectiveThis cohort study evaluated the palliative benefits of zoledronic acid (ZA) in patients with metastatic cancers, focusing on clinical and functional improvements, with additional assessment of emotional well-being.MethodsAn observational cohort study was conducted at Omega Hospitals, Guntur, India, from August 2024 to March 2025. Adult patients with metastatic cancers who received at least four doses of intravenous ZA (4 mg) were included. Pain intensity was assessed using the Brief Pain Inventory-Short Form (BPI-SF), and quality of life (QoL) was measured using the EORTC QLQ-C30 questionnaire.ResultsA total of sixty-two patients (mean age 57.7 ± 9.65 years; 72.6% female) were enrolled. Treatment with ZA resulted in significant reductions in pain severity (median 5.0 to 0.0; p < 0.001) and pain interference (median 3.0 to 0.0; p < 0.001). Improvements were also observed in global health (58.08 to 68.57; p < 0.001), social functioning (57.35 to 64.40; p = 0.01), fatigue (54.81 to 48.88; p = 0.01), and emotional functioning (50.82 to 63.64; p < 0.001). Physical functioning increased slightly (65.44 to 66.50; p = 0.62) but did not reach statistical significance. However, joint pain and hot flashes worsened after treatment (p < 0.01).ConclusionZA provides meaningful clinical and functional benefits in metastatic cancer patients, particularly through pain reduction, global health improvement, and better social functioning, with additional gains in emotional well-being. The modest, non-significant change in physical functioning emphasizes the influence of advanced disease stage and comorbidities.

ObjectivesSome nursing home residents opt to forgo hospital admission in case of a suspected hip fracture due to the poor prognosis. However, outcomes in these patients are unknown and hamper advance care planning and expectation management. This study assesses treatment satisfaction and quality of life in nursing home residents with a suspected hip fracture and a do-not-hospitalize directive.MethodsA prospective case series study was conducted in three nursing home organizations in The Netherlands. The primary outcome was the treatment satisfaction according to proxies and caregivers. Secondary outcomes were EuroQoL-5D-5L utility score, Qualidem scores, pain and opiate administration, adverse events, mortality, and quality of dying (Quality of Dying and Death Questionnaire).ResultsTwenty patients, with a median age of 87 years, were included. The treatment satisfaction as rated by proxies and caregivers was high (median numeric rating scale of 9 [P25-P75 8-10] and 9 [P25-P75 8-9], respectively). The life expectancy was short (median of 5 days [P25-P75 3-6]) with a 14-day mortality rate of 100%. The overall quality of the death was "good to almost perfect" in 77% of the patients (n = 10/13) and "intermediate" in 23% (n = 3/13). Symptom control was rated as "good to almost perfect" in 70% of patients. Four adverse events occurred in three patients (15%).ConclusionsThis study showed that nonoperative management of suspected proximal femoral fractures in nursing home patients that opted to forgo hospital admission, results in high treatment satisfaction, high quality of dying with good symptom control, and predictable short-term mortality rates.

ObjectivesHaving a child with a life-limiting or life-threatening illness affects the lives of family members. Sleep disorders are among the most common symptoms in pediatric palliative care, but strategies for symptom management associated with sleep disorders are poorly understood. In this study, we aimed to identify sleep disorders in children in pediatric palliative care, to identify sleep disorders in parents, and to examine associated factors.MethodsThe study was a cross-sectional, prospective study conducted between September 2020 and April 2021 in Izmir, Türkiye. The Child Sleep Habits Questionnaire and the Pittsburgh Sleep Quality Index were used to assess sleep disorders in children and parents.ResultsA total of 76 caregiver parent-child couples with life-threatening/limiting disease were included in the study. The mean age of the children was 7.79 ± 4.28 years and 61.8% (n = 47) were male. The child's The Child Sleep Habits Questionnaire total score and the parent's Pittsburgh Sleep Quality Index total score showed a weak positive correlation (r_s(76) = 0.309, p = 0.007). Among the subscales, "Bedtime resistance" score was statistically significantly higher only in girls (12.28 ± 2.34 vs 10.96 ± 1.89, p = 0.018), whereas "Sleep duration" score was statistically significantly lower in the male parent group (4.0 ± 1.15 vs 5.97 ± 1.63, p = 0.028).ConclusionsSleep disturbances in children in pediatric palliative care and their caregivers are important. Caregivers' sleep is affected by children's sleep duration, sleep anxiety, and nocturnal awakenings. Adjusting the treatment of patients on medication at night as well as during the day can improve both the child's and the mother's sleep.

ObjectivesAssisted dying and palliative care represent distinct approaches to addressing the needs of patients with advanced, progressive, and life-limiting illness. Although 5 years have passed since the Voluntary Assisted Dying (VAD) Act was passed in Victoria (Australia), little is known about the VAD and palliative care interface in clinical practice. This retrospective case series examined patients who requested VAD and received inpatient specialist palliative care (SPC).MethodsRetrospective case series of patients admitted to a single-site public palliative care unit (PCU) between June 2019 and June 2024, who had enquired about or requested VAD at any point in time.Results6% of patients admitted to the PCU enquired about or requested VAD at any point in time; 2% raised VAD during their PCU admission, while the remaining patients were admitted with existing requests made in other healthcare settings. A small proportion of patients had VAD requests made by caregivers or had statements misinterpreted as VAD requests. Requests for VAD were made to palliative care professionals (50%) across multiple settings where palliative care is delivered. Most patients (44%) did not progress past an initial request for VAD, and 32% made requests in their final 2 weeks of life. Four patients administered the VAD substance and died while in the PCU. In the PCU, patients discussed VAD with their treating team (number of documented conversations ranging from 0 to 25 during admission).ConclusionsThis case series highlights a tangible intersection between SPC and VAD in that patients enquired about and requested VAD to palliative care teams, and in the PCU, they discussed and completed VAD. Implications for SPC will be discussed.

ObjectivesRecently, atrial fibrillation (AF) has contributed to an increase in cardiovascular deaths in the U.S. Palliative care (PC) and atrial ablation (AA) procedure can elevate quality of life of high-risk AF patients, who are associated with multiple comorbidities. We explore the combined PC and AA management among high-risk mortality groups with AF.MethodsThis pooled cross-sectional retrospective data used the National Inpatient Sample (2016-2021) and included national estimates of 2,965,334 hospital discharges in the high-risk mortality group with AF. Multivariable regression was performed to determine the factors associated with AA procedure and PC centered on CHA2DS2-VASc score, systolic heart failure, and in-hospital mortality. Race/ethnicity, health insurance, and hospital location were controlled in multivariable analyses.ResultsPalliative care utilization was on an uptrend from 9.02% in 2016 to 12.29% in 2021. Factors that were negatively associated with PC utilization were increasing CHA2-DS2-VASc score (OR = 0.878), systolic heart failure (OR = 0.976), AA procedure (OR = 0.287), racial minorities, and rural residents. Atrial ablation was positively associated with systolic heart failure (OR = 2.920) and was negatively associated with increasing CHA2-DS2-VASc score (OR = 0.951) and PC utilization (OR = 0.283). Racial minorities and rural residents were less likely to receive AA procedure.ConclusionsPalliative care utilization was associated with lower probability of AA procedures by approximately 75%, and vice versa. Atrial ablation procedures and PC utilization were discrete choice patterns indicating healthcare providers' tendency to favor the status quo and current practices rather than initiating change. Health disparities in PC utilization and AA procedures were identified in racial minorities and rural residents. Call to action is warranted to increase PC awareness and harmonious approach of PC and AA procedure for those with high-risk mortality AF patients in the U.S. hospitals.