Journal of Palliative Care最新文献

ObjectiveCardiogenic shock is associated with high mortality despite advances in revascularization and mechanical circulatory support (MCS). While palliative care may play a role in guiding treatment decisions, the available evidence is limited. This study aimed to assess the association between the use of palliative care and in-hospital outcomes, as well as resource utilization, in patients experiencing cardiogenic shock.MethodsUsing the National Inpatient Sample database (2016-2019), we identified adults hospitalized with cardiogenic shock. Patients were stratified according to receipt of palliative care. Outcomes included in-hospital mortality, use of MCS, intra-aortic balloon pump (IABP), percutaneous ventricular assist device (pVAD), extracorporeal membrane oxygenation (ECMO), length of stay, and hospital charges.ResultsAmong 574,375 hospitalizations with cardiogenic shock, 20.1% involved palliative care. In-hospital mortality was significantly higher with palliative care (68.5% vs 26.3%; adjusted relative risk [RR] 2.51; 95% confidence interval [CI] 2.47-2.54). Palliative care was associated with lower use of MCS overall (14.5% vs 22.7%; adjusted RR 0.69; 95% CI 0.67-0.72), including IABP and pVAD, but higher use of ECMO (3.0% vs 2.4%; adjusted RR 1.47; 95% CI 1.34-1.60). Patients receiving palliative care had shorter hospital stays and lower total charges. Findings were consistent across ischemic and nonischemic groups.ConclusionsIn cardiogenic shock, palliative care was associated with higher mortality, lower MCS use, and reduced healthcare utilization. These findings support its role as a complementary component of shock management. However, interpretation remains limited by the restricted clinical detail of administrative data, including absent information on illness severity, treatment trajectory, and the precise timing or nature of palliative care involvement.

ObjectiveTo examine patterns of emergency department (ED) presentation and emergency hospital admission in the last 90 days of life for residents of New South Wales, Australia.MethodsA retrospective audit of electronic clinical records. Descriptive statistics report patterns of ED presentation and emergency hospital admission in the last 90 days of life, and symptom drivers of ED presentation. Logistic regression identifies factors associated with low versus high rates of ED presentation and emergency admission.Results2869 ED presentations are included across 1730 decedents. 80% of ED visits led to admission. 92% of people had at least 1 ED presentation in the final 90 days of life, with 18% having 3 or more. 86% of people had at least 1 emergency admission, with 9.5% having 3 or more. Odds of high ED use and high admissions were increased for people with cancer and those under 70 years. ED visits were long and often involved multiple investigations, but a small number of patients required no investigations. Common symptom drivers of ED attendance were pain, breathlessness, and confusion/delirium.ConclusionsED presentations in the final months of life are common, and investigations are often required to assess for potentially reversible problems. Some people approaching end of life require admission to hospital via ED without the need for investigations, so may be seeking help for escalating nursing needs. Alternative models of care are needed to support escalating nursing needs at home, and funding for palliative services must keep pace with the rising demand.

ObjectiveThis study aimed to translate, culturally adapt and validate the Respiratory Distress Observation Scale (RDOS) for use with patients in the terminal phase.MethodsEighty critically ill patients participated in this prospective, cross-sectional study. We assessed the language equivalence, reliability, and validity of the Turkish version of the RDOS. Relative reliability was determined using the intraclass correlation coefficient (ICC). To evaluate consistency between clinical measurements taken by two different clinicians, we employed Bland-Altman plots and type II regression. Convergent validity was analysed by examining correlations with the Visual Analog Scale for Dyspnea (VAS-D) and oxygen saturation (SpO₂). Receiver operating characteristic (ROC) curves were utilised to estimate sensitivity and specificity.ResultsThe RDOS-T items demonstrated excellent ICC values, ranging from 0.883 to 0.983. The scale showed reproducibility, with upper and lower limits of agreement at 2.148 and -2.423, respectively. A strong positive correlation was found between RDOS-T and VAS-D, while a moderate negative correlation existed between RDOS-T and SpO₂. ROC curve analysis revealed an area under the curve of 0.788 (p = .005). It was found that the model had moderate discriminant validity. It also demonstrates its significant distinctiveness.ConclusionThe RDOS-T is a valid and reliable tool for assessing respiratory distress in this study aims to evaluate the reliability and validity of the RDOS in patients during the terminal phase.

ObjectivesVirtual reality (VR) opens a variety of therapeutic options to improve symptom burden in patients with advanced disease. Until to date, only few studies have evaluated the use of VR therapy in the context of palliative care. This case series aims to evaluate the feasibility and acceptability of VR therapy in a population of palliative care patients.MethodsIn this single-site case series, we report on six palliative care patients undergoing VR therapy. The VR therapy consisted of a one-time session ranging between 20 to 60 minutes depending on the patient's needs and the content chosen for the VR sessions. A semi-structured survey was conducted and the Edmonton Symptom Assessment System (ESAS) and the Distress Thermometer were performed pre- and post-intervention.ResultsOverall, VR therapy was well accepted by all patients. Five out of six patients reported having appreciated VR therapy. There were individual differences of perceived effects using VR therapy. The semi-structured survey revealed that some patients felt a temporary detachment from their body and that patients were able to experience the VR session as a break from omnipresent worries and the hospital environment ("I completely forgot where I am"). There was a considerable reduction in the total ESAS score post-treatment (T0 ESAS_Tot = 27.2; T1 ESAS_Tot = 18.8) and a slightly reduction in distress (T0 DT_Tot = 4.4; T1 DT_Tot = 3.8). However, two patients were more tired after the intervention.Significance of Results: Our preliminary results demonstrate that VR therapy is acceptable, feasible and safe for use within a palliative care population and appears to be a viable treatment option. Clinical trials are both warranted and necessary to confirm any therapeutic effects of VR therapy, as is the need to tailor VR systems better for use in palliative care settings.

Objective: To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Methods: Interpretative phenomenological analysis was the design of this study. Hospice healthcare workers from four pediatric hospices across Canada were recruited through purposive sampling. Semistructured in-person interviews were conducted. Results: Eighteen hospice healthcare workers participated. Two superordinate themes were identified. First, balancing on the tightrope of uncertainty wherein hospice healthcare workers strive to do their best while aiming to take the path of least regret. This theme was underscored by a notion of doing for the adolescents and young adults. Second, acting as a proxy revolves around the importance of fostering relationships with adolescents and young adults through honesty and transparency. The cycle of protection between adolescents and young adults, families, and healthcare providers was emphasized. Conclusions: An action-focused orientation when supporting adolescents and young adults was shared by the healthcare workers. The need to do for adolescents and young adults and the need to protect not only the people they care for but also themselves. More exploration is needed on how healthcare workers who care for adolescents and young adults can be supported while better understanding coping mechanisms.

Objective: The development process of self-growth among Chinese hospice volunteers is poorly understood. This study aimed to explore and delineate their dynamic progression toward self-growth. Methods: This qualitative study used grounded theory to analyze semi-structured interview data using individual in-depth face-to-face interviews with 15 volunteers at a hospice care center in Ningbo, China, between January 2021 and January 2022. Data analysis was based on the open, axial, and selective coding stages of grounded theory and used the constant comparative method. Results: From the interview data, we extracted 1 core category (Death awakening life), 4 categories, and 19 subcategories that pertained to the process of self-growth. The 4 categories delineated the process of self-growth; respondents progressed through self-salvation, self-reflection, self-healing, and self-transcendence stages. The 19 subcategories are introduced and illustrated with interview extracts. Conclusions: The study findings can inform the development of training projects aimed at improving hospice care volunteer services.

Palliative care is a vulnerable area of practice that requires a team to cater to the needs of physical, psychological, social, and spiritual needs and the requirements for unmet needs for patients under palliative care is quite large and increasing. India is creating awareness for palliative care stand at the foremost requirement as well as who can cater to patients who require palliative care. Along with many other treatments, therapies and supports being provided to patients, music therapy may play the role with preventative and curative periods of treatment, as well as support to cope and acceptance toward the inevitable for the patient as well for the caregivers. Music therapy provides a biopsychosocial and holistic approach to palliative care. Musical interventions include methods of receptive, improvisation, recreative, and creative spanning across many techniques and have been found to help with coping, expressing emotions, regulating emotions, acceptance, managing pain, and distress, supportive to caregivers through grief and bereavement. This paper hopes to provide an insight into the role of music therapy as a Salutogenic approach within a biopsychosocial framework and its need to be accepted in the Indian context.

Objectives: To evaluate electronic health records and explore associations with the satisfaction of families of critically ill patients. Methods: Exploratory cohort study. Included 94 patients with severe chronic illnesses or chronic critical illness who were admitted to the ICU and their family members. Family satisfaction was assessed using the Family Satisfaction ICU (FS-ICU 24) questionnaire, through the FS-ICU Care score (perception of care itself), FS-ICU Decision Making score (perception of decision-making), and FS-ICU Total score, and queried about the use of a room suitable for communication. Electronic health records were analyzed for elements of communication with family members, care processes, and decision-making. Results: The scores were FS-ICU Care 91.1 (76.8-98.0), FS-ICU DM 90.0 (77.5-97.5), and FS-ICU total 90.7 (78.0-97.0). In 17 (18.1%) of the medical records, there was a documented family meeting within the first 72 hours, and in 9.6%, there was documentation of communication about functionality, wishes and values, and consultation for palliative care. The use of a suitable room for communication was reported as "never" or "rarely" by 45 (47.8%) of the family members. There was a trend towards greater satisfaction with social support and lower satisfaction among family members of deceased patients, with 9 (25.8%) of these family members feeling that the patient was uncomfortable before death, and the records of meetings and communication of poor prognosis were associated with a lower perception of discomfort (P < .05). Conclusions: The satisfaction of family members of critically ill patients was high and was not significantly associated with the documentation deficiencies found. Deficiencies in communication appear to have influenced the perception of family members. Various perspectives are necessary for analyzing the care provided to patients and families in the ICU.

The integration of palliative care into conventional healthcare services has demonstrated significant benefits in alleviating serious health-related suffering (SHRS), reducing symptom burden, and lowering healthcare expenditure for patients and families. Despite Lebanon's initial steps towards palliative care development, its integration remains inadequate, particularly due to the country's socio-political and economic challenges. This paper examines the current landscape of palliative care services in Lebanon, including their geographical distribution and care models, while addressing the obstacles impeding their progress. Data on palliative care services were gathered from the presentations of stakeholders at the 2023 National Palliative Care Conference. Currently, three nonprofit organizations provide home-based palliative care primarily for end-of-life patients, while seven hospitals offer palliative care through inpatient consultation teams, three of which have specialized palliative care wards and two outpatient clinics. Hospital-based palliative care services are primarily located in the capital city Beirut and operate within private healthcare facilities. Notably, only home-based services are provided free of charge, while hospital-based care is not reimbursed, thus limiting access to palliative care for only those who can afford it. The political and economic instability, inadequate policies and insufficient reimbursement, shortage of trained expertise and essential medicines like morphine, and inconsistent health education are some of the challenges that Lebanon faces in developing palliative care. A multilevel coordinated response and advocacy are crucial to drive policy reforms, enhance education, promote public awareness, and improve clinical practice ensuring quality and equitable palliative care access to all.

Pemphigus vulgaris (PV) is a chronic autoimmune disease causing painful oral erosions and fragile skin blisters, severely impacting quality of life. This case report presents a 69-year-old female patient in Myanmar with PV complicated by diabetes, hypertension, and thromboembolic conditions. Her extensive skin involvement, severe pain, and recurrent infections emphasized the need for a multidisciplinary approach to management. Palliative care interventions focused on holistic, patient-centered strategies, including effective pain relief with pre-procedural analgesia, meticulous wound care, and strict infection control. Psychological support significantly improved her mental well-being and daily functioning. The case highlights the urgent need for enhanced patient education, continuous follow-up, and structured psychosocial support to optimize treatment outcomes. By implementing these measures, healthcare providers can ensure a more comprehensive approach, improving long-term care and patient satisfaction for individuals living with PV.