Journal of Palliative Care最新文献

Objective(s)Patients with advanced head and neck cancer (AHNC) are susceptible to malnutrition due to disease progression and side effects of cancer treatments. Current evidence on the effectiveness of nutritional interventions is limited. This scoping review aims to identify the nutritional needs and experiences of patients with AHNC and provide an overview of nutritional interventions implemented to prevent malnutrition.MethodsCINAHL via EBSCO, PubMed, EMBASE via OVID, Web of Science, Scopus and Google Scholar were searched from inception to August 2024, and articles were screened based on predefined inclusion criteria. The Joanne Briggs Institute Scoping Review Framework guided the review. The Patterns, Advances, Gaps, Evidence for Practice, and Research Recommendations (PAGER) framework was used to synthesise findings.ResultsOf 1703 articles identified, 32 met the inclusion criteria, including 13 retrospective studies, 9 prospective studies, 7 reviews and 3 guidelines. Using the PAGER pattern chart, 4 themes were identified: (1) the use of enteral tube feeding, (2) identification and treatment of malnutrition, (3) the effects of palliative treatment on nutrition and (4) the experiences of patients and carers. Enteral feeding was the most common intervention to manage malnutrition; however, other interventions such as dietary counselling, oral nutritional supplements and parenteral nutrition were also employed. These interventions should be tailored to specific needs of the patients.ConclusionsWeight loss and impaired oral intake were associated with psychosocial distress affecting patients and carers. Future research is needed to explore the experiences of patients, carers and healthcare professionals regarding nutrition and evaluate the effectiveness of alternative nutritional strategies.

End-of-life care for cancer patients varies significantly based on the type of malignancy, with hematological malignancies (HMs) and solid tumors (STs) presenting unique challenges. While specialized palliative care (PC) is well-established for managing STs, its integration into HMs' care remains less common despite evidence of its benefits. Objective: To compare the quality of end-of-life care and PC involvement in patients with HMs versus those with STs using recognized quality indicators. Methods: A retrospective comparative study was conducted at a large tertiary care center in Riyadh, Saudi Arabia, covering the period from January 1, 2023, to December 31, 2023. Data were retrieved from medical records and included demographics, clinical information, and healthcare service use during the last 6 months before death. Results: The cohort consisted of 350 adult patients, of whom 86 (24.6%) had HMs and 264 (75.4%) had STs. Overall, HMs patients received more aggressive end-of-life care, including higher rates of Intensive Care Unit (ICU) admissions (81.4% vs 17.8%), intubation (36% vs 8.3%), disease-modifying treatments (23% vs 3.8%), as well as more enteral feeding, dialysis, blood transfusions, and antimicrobial use. Their resuscitation discussions occurred closer to death (3 vs 16 days; p < .001). Additionally, HMs patients had fewer referrals to PC services (43% vs 79.2%; p < .001), and most of them died in the ICU (59.3% vs 18.2%; p = .0001). Conclusions: These findings highlight the need for further research to understand the unique needs of HMs patients better and to adapt care models that improve their quality of life and end-of-life experience.

ObjectivePeople with opioid use disorder are at high risk of serious comorbidities, more likely to die from all major diseases, and their end-of-life needs remain poorly understood. We aimed to examine the relationship between receipt of palliative care across settings and the location of death among individuals with opioid use disorder.MethodsWe employed a population-level cohort study using health administrative databases. Our cohort was adults with opioid use disorder in Ontario, Canada, who died between July 2015 and December 2021 (N = 11,200). Our exposure was receipt of palliative care within three years prior to the last 90 days of life (inpatient-only, outpatient, or none (reference)). Our primary outcome was the location of death in the community versus institution (reference).ResultsAmong our decedent cohort, 5636 (50.3%) received no palliative care before their last 90 days of life, and among those who received it, only 1846 (33.2%) received any outpatient palliative care and 3718 (66.8%) received inpatient-only palliative care. After covariate adjustment, receiving inpatient-only palliative care (vs no palliative care) was associated with a 6% (RR 0.94; 95% CI 0.91, 0.98) decrease in the likelihood of community death, whereas there was no relationship between outpatient palliative care and location of death.ConclusionsThe association of palliative care with the location of death for people with opioid use disorder varies by setting of care. Further research is required to understand if community deaths are aligned with preferences and whether additional factors contribute to their likelihood.

ObjectiveThe aim of this study was to translate, culturally adapt, and validate the Swedish Thanatophobia Scale.MethodsForward and back translation, cultural adaptation, content validation, and psychometric testing were undertaken through interviews with experts and surveying of healthcare professionals.ResultsThe results from expert ratings (n = 7) for the Item Content Validity Index were calculated for scale understandability (mean, 0.90), clarity (mean, 0.91), sensitivity (mean, 0.94), and relevance (mean, 0.96). Interviews (n = 10) confirmed the importance of the scale questions and subject matter. The scale was tested among a sample of 386 participants (physicians = 104; registered nurses = 282). No significant differences were found between ratings from physicians and registered nurses. Exploratory Factor Analysis supported the unidimensionality of the scale. The Cronbach's alpha for the total scale was 0.89, indicating good internal consistency.ConclusionsThe Swedish Thanatophobia Scale appears to be a valid and reliable measure of healthcare professionals' attitudes toward caring for patients in palliative care.

ObjectiveThis rapid scoping review was undertaken as part of a larger study to design a statewide operational model of grief and bereavement supports in South Australia. The aim of the review was to describe the structures, services, and components of supports offered by grief and bereavement programs in South Australia.MethodsThe review was preceded by a desktop review of gray literature and informed by the Joanna Briggs Institute methodology for scoping reviews. Databases searched included Cumulated Index in Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, and PubMed. Data were extracted about specific supports, services and programs, and imported into NVivo for thematic analysis.ResultsA total of 2383 articles were retrieved, with the findings from 88 articles extracted and included. Eleven themes relating to supports for grieving and bereaved people comprised: (1) follow-up bereavement care (with health professionals); (2) counseling support; (3) bereavement coordination; (4) peer support; (5) information about grief and loss; (6) referrals and risk assessment; (7) memorial services and mementos; (8) other practical and informal emotional supports; (9) personnel; (10) staff training; and (11) staff support.ConclusionsThis review advocates for including all identified supports in comprehensive grief and bereavement care. While implementing this in full may be challenging for individual services and providers due to time and resource constraints, integrating these components at a population level should be considered. Each element plays a role in delivering holistic care, requiring the combined efforts of community action and formal service provision.

Background: Culture and religion influence lived experience and particularly dying and grieving. Research has largely focused on exploring culturally and religiously sensitive practices, but not necessarily in palliative and hospice care or across nations. Acquired knowledge from the more advanced end-of-life care systems (eg the UK) tends to be generalized to other contexts where its cultural appropriation is not tested. Aim: This study explored the different qualities, among hospice and palliative professionals in Cyprus, describing cultural competence, cultural humility, and religious literacy. Design: A cross-sectional study of 41 palliative and hospice professionals in Cyprus, with the use of a 5-point Likert style questionnaire (a = 0.898). Setting: The study took place in Cyprus and participants were recruited from across palliative and hospice care organizations, including the only hospice in Cyprus, Cyprus Association of Cancer Patients and Friends (PASYKAF), and the Cyprus Anti-Cancer Society (CACS). Results: This study found that there are four main qualities that lead to effective culturally and religiously sensitive practice-informed decision-making, respect, adaptability, and nonjudgmental practice. Conclusions: Future education and training of professionals can consider these findings to appropriate approaches in practice that fit the Cypriot end-of-life care context more effectively.

Objective(s): Differences in the German emergency medical service (EMS) can be seen in the countryside in contrast to the city with regard to travel distances to hospitals and in the access routes of EMS-physicians. In order to investigate the success of establishment of palliative crisis cards associated with training and the rural and urban EMS structures, two urban and two rural EMS areas were compared using the Paramedic Palliative Care Test (PARPACT). Methods: The PARPACT includes test items on palliative knowledge (PK, maximum score: 15 points) and palliative self-efficacy expectations (PSE, maximum score: 18 points), as well as items on palliative attitudes in dealing with palliative care patients. We used a 4-point Likert-type scale. For data analysis, nonparametric tests (χ-test and Mann-Whitney U test) were used in addition to descriptive analysis (frequencies, means, medians, standard deviations, and ranges). Results: In total, 291 out of 750 ambulance or EMS personnel participated in the voluntary survey. Rural ambulance or EMS personnel answered the PK-questions correctly more often on average (mean: 11.19, SD: 1.85) than urban ambulance or EMS personnel (mean: 9.18, SD: 2.39; Mann-Whitney U test: U=5040.000, P=.001). In addition, ambulance or EMS personnel with the highest level of training (3-year-trained paramedics) performed better in PK (mean: 10.38, SD: 2.31) than less intensively training ambulance or EMS personnel (mean: 9.58, SD: 2.43; Mann-Whitney U-test: U=8446.500, P=.004). In terms of PSE, rural ambulance or EMS personnel also achieved higher mean PSE-scores (mean: 12.55, SD: 2.60) than urban ambulance or EMS personnel (mean: 9.77, SD: 3.41; Mann-Whitney U-test: U=5148.500, P=.001). Conclusions: Better training in the EMS is associated with improved PK compared to less qualified nonphysician EMS staff. The establishment of palliative crisis cards and the structures in the city alone do not lead to improved knowledge and PSE.

Individuals living with serious illness might request deactivation of a cardiac implantable electronic device for a variety of reasons. Discontinuation of implantable cardiac defibrillators and pacemakers are considered to be ethically sound procedures. However, healthcare professional comfort with discontinuation of different types of devices might vary. In this case we describe a veteran's request for pacemaker deactivation and our interdisciplinary team's response to this request, including evaluation of total suffering, ethical considerations, and mood symptoms at end-of-life.

Purpose Stressful and demanding clinical situations may contribute to job dissatisfaction and may even contribute to an intention to leave the job among palliative care (PC) clinicians. Personal and organizational factors may influence the occupational well-being of PC clinicians as well. This study aimed to determine the predictive contribution of personal (communication skills, resilience, religiosity) and organizational (coworkers' social support, job control) factors in the explanation of PC clinicians job (dis)satisfaction and their intention to leave their job. Methods The study was conducted on a convenience sample of 122 PC clinicians of different disciplines (nurses/technicians, physicians, psychologists, spiritual counsellors/priests, social workers, physical therapists, etc). The sample mainly consisted of nurses (57%). Hierarchical and logistic regression analyses of the results obtained were applied. Results This study indicates that 53% of PC clinicians are satisfied with their daily job and 76% do not intend to leave the job. The results showed no differences in job satisfaction and intention to leave between nurses/technicians and other PC clinicians. A significant negative correlation was found between job satisfaction and intention to leave the job. Communication skills, religiosity and coworkers' social support, showed as significant predictors of job satisfaction. PC clinicians' perception of their own difficulties in communicating bad news contributed significantly to job satisfaction and intention to leave the job in palliative care. Conclusion This study suggests that job satisfaction in a palliative care setting is determined by a larger number of personal and organizational factors than the intention to leave the job. Communication skills showed indispensable for providing quality care for dying patients. Skills in communicating bad news to dying patients and their families have emerged as particularly important for PC clinicians' occupational well-being.

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.