The American journal of hospice & palliative care最新文献

Motivation: Palliative Care (PC) is a small, relatively young interprofessional sub-specialty; hence mentorship for early-career research faculty is widely dispersed across schools and universities. We developed the Junior Visiting Professor Program (JVPP) to provide junior faculty in palliative care (PC) with opportunities to meet multidisciplinary PC researchers from other institutions and to advance their research through networking and presenting their work. We describe how we designed and implemented the program, and we report on the first cohort of participants.

Methods: We invited PC research groups from US schools of medicine and nursing to participate in this 5-year interprofessional exchange program by nominating junior faculty and serving as hosts. We matched nominees to host institutions based on nominee training experiences, nominee research interests, and host institution faculty expertise. In addition, we provided logistical guidance on visit planning. Post-visit, we surveyed both hosts and junior visiting professors (JVPs) regarding their satisfaction, perceived value, and suggestions regarding the program.

Results: We recruited 13 schools to participate and matched 10 nominees to host institutions in our first year. Nine JVPs completed their visit; 6 JVPs and 8 host faculty/staff responded to the post-visit survey. Overall, JVPs were highly satisfied with their matches and the visiting professor experience. Hosts were generally satisfied with their matches and believed the program to be mutually beneficial. The most frequent suggestion was for greater administrative support to plan visits.

Conclusions: Structured, well-supported opportunities for networking across institutions is beneficial for emerging PC researchers and for building PC research capacity.

Background: Prevalence of pathological fractures in palliative care is less studied. This study aimed to determine the annual prevalence of pathological fractures and describe the characteristics and treatments in patients with pathological fractures referred to a specialist palliative care clinic in a tertiary care cancer center in India. Methods: Data of adult cancer patients newly referred to the specialist palliative care clinic over 1 year with a clinico-radiological diagnosis of pathological fracture was included. Key outcomes of interest were annual prevalence, clinical characteristics, symptoms and treatments offered. Results: 75 out of 5800 (1.29%) patients newly referred to the clinic over 1 year had pathological fractures. Lung cancer was the most common primary diagnosis (n = 23).Dorsal spine (n = 25) was the most common site of fracture. Pain was the predominant symptom. Mean pain score was 7.04(SD = 1.75) and 42 patients (56%) required strong opioids for analgesia. Only 11 (16%) patients underwent surgical fixation. Median duration from diagnosis of cancer to occurrence of fracture was found to be 329 days. Treatment goals changed to best supportive care in 33 patients (44%) post fracture. Patients with bone and soft tissue neoplasms and those who received only chemotherapy previously had a higher risk of occurrence of fractures. Conclusion: Annual prevalence of pathological fractures in patients referred to the specialist palliative care clinic was 1.29%. It was associated with significant symptom burden and affected oncological treatments. Close monitoring of patients with bone metastases is crucial and proactive implementation of prophylactic measures to prevent such skeletal related events is warranted.

Background: Palliative care (PC) is integral to improving the quality of life and mitigating suffering for individuals with serious illnesses. This interdisciplinary-led study aims to comprehensively evaluate the prevalence of distressing problems and unmet needs among both cancer and non-cancer chronic disease patients and explore their need for PC.

Methods: A cross-sectional, comparative, and multicenter design was conducted, involving 458 patients from eight hospitals, utilizing a self-reported Problems and Needs in Palliative Care-sv questionnaire.

Results: The study included 276 (60.3%) patients with cancer and 182 (39.7%) with non-cancer chronic diseases. Most were 45-64 years old (n = 216, 47.2%). Patients with cancer reported a higher prevalence of physical symptoms, notably pain (n = 240, 87%) and anorexia (n = 192, 69.6%), while non-cancer patients faced more social challenges, including issues in companion relationships (n = 77, 42.3%) and discussing their disease with life companion (n = 78, 42.9%). Unmet needs were prevalent in both groups, with cancer patients having an average of 75.6% (n = 120) unmet needs, predominantly in the information (n = 145, 91.75%) and spiritual domains (n = 123, 77.8%). Non-cancer patients emphasized financial (n = 71, 66.6%) and autonomy (n = 59, 55.0%) problems. Moreover, patients in both groups with severe Charlson Comorbidity Index scores demonstrated significantly higher PC needs across all health domains.

Conclusion: The study highlights the universal demand for comprehensive PC for patients with both cancer and non-cancer chronic diseases. The findings underscore the need for enhanced PC provision, especially for patients with multiple comorbidities. Further research is needed to comprehensively address psychological, social, and spiritual problems in both patient groups.

Background: Preferences of patients with advanced cancer are well studied in Western countries but less so in Asian communities where end-of-life discussions can be seen as taboo. This may lead to patients receiving care that is incongruent with their wishes as their disease progress. It is important for healthcare providers to have a better understanding of patients' experiences and preferences especially in a multicultural country like Malaysia with its diverse beliefs and values to facilitate better planning for future medical care.

Objectives: To explore the experiences and preferences of Malaysian patients with advanced cancer.

Design: Qualitative study of semi-structured interviews with thematic analysis.

Setting/subjects: Purposive sampling of 19 patients with Stage 4 cancer recruited from inpatient and outpatient settings in National Cancer Institute Malaysia.

Results: Three major themes emerged in the exploration of patients' experiences and care preferences in facing advanced cancer namely: 1) Dealing with poor prognosis 2) Spirituality as a source of strength and 3) Enablers of advance care planning.

Conclusion: This study highlighted the preference for healthcare providers to be culturally sensitive during end-of-life care discussion and the need for improved spiritual care for Malaysian patients with advanced cancer. Further studies exploring the role of spiritual and cultural factors in advance care planning among Malaysians would be helpful in guiding these efforts.

Objectives: Perceptions towards advanced care planning (ACP) amongst individuals with Ischemic Heart Disease before or after a life-threatening Acute Myocardial Infarction event is underexamined and could impact the appropriate timing for ACP advocacy. This cross-sectional study assessed awareness and intentions regarding ACP in individuals with Ischemic Heart Disease, both before and after an Acute Myocardial Infarction, and explored the motivating effect of a near-fatal Acute Myocardial Infarction event on its engagement.

Methods: This study was conducted from 24 August 2021 through 13 March 2023, whereby patients were administered a one-time questionnaire with no follow-up required. Patients with either chronic Ischemic Heart Disease (group A) or a recent Acute Myocardial Infarction event (group B) were recruited from the outpatient National University Heart Centre, Singapore.

Results: 101 patients (n = 51 for Group A, n = 50 for Group B) were recruited. Mean age (SD) was 59 (10.5) years and 84 were male (83.2%). Between both groups, patients in group B reported significantly higher scores on 'Lack of information' and 'Self-efficacy' domains, and had no ACP awareness nor plans of doing an ACP compared to group A. ACP awareness was the sole significant predictor of intentions of doing an ACP in the final regression model (P < .05).

Conclusions: Interestingly, this study suggests that surviving a potentially life-threatening heart condition did not result in higher intention of doing an ACP. Thus, advocacy of ACP in the community should simply start by raising awareness levels widely and may not need to be focused on individuals' state of health.

Background: Analysis of documented Serious Illness Conversations (SICs) in the inpatient setting can help clinicians align management to address patient and caregiver needs.

Methods: We conducted a mixed methods analysis of the first instance of standardized documentation of a SIC within a structured module among hospitalized general medicine patients from 2018 to 2019. Percentage of documentations that included a description of patient or family understanding of the patient's medical condition and use of radio buttons to answer the "prognostic information shared," "hopes," and "worries" modules are reported. Using grounded theory approach, physicians analyzed free text entries to: "What is important to the patient/family?" and "Recommendations or next steps planned."

Results: Out of 5142 patients, 59 patients had a documented SIC. Patient or family understanding of the medical condition(s) was reported in 56 (95%). For "prognostic information shared," the most frequently selected radio buttons were: 49 (83%) incurable disease and 28 (48%) prognosis of weeks to months while those for "hopes" were: 52 (88%) be comfortable and 27 (46%) be at home and for "worries" were: 49 (83%) other physical suffering and 36 (61%) pain. Themes generated from entries to "What's important to patient/family?" included being with loved ones; comfort; mentally and physically present; and reliable care while those for "Recommendations" were coordinating support services; symptom management; and support and communication.

Conclusions: SIC content indicated concern about pain and reliable care suggesting the complex, intensive nature of caring for seriously ill patients and the need to consider SICs earlier in the life course of patients.

Palliative care is directed to relieve the symptoms of serious and life-threatening illnesses. Unfortunately, it's usually provided lately in the disease course in developing countries due to a lack of awareness about its concept, which deprives many patients of its benefits. This study aims to investigate the knowledge and attitude of the Jordanian general public toward palliative care. A cross-sectional study was conducted using an electronic questionnaire via social media platforms. Knowledge about palliative care was measured using the "Palliative Care Knowledge Scale" (PaCKS), whereas the attitude was measured using an edited version of the "Frommelt Attitudes Toward Care of the Dying -B(FATCOD-B)" tool. The inclusion criteria were adults older than 18 years old who live in Jordan. Any subject who was younger than 18 years old, refused to give informed consent, and working or studying in a healthcare-related profession was excluded. 329 respondents filled out the survey (females = 214 (65%), mean age = 32.7 ± (13.63) years). Only 67 respondents (20.4%) heard about palliative care previously. The average knowledge score (out of 13) was 6.8 (±4.2). The average attitude score (out of 5) was 3.0 (±.4). Higher knowledge self-evaluation, older age, and higher income were factors associated with a higher level of knowledge and favorable attitude toward palliative care. Our study showed a moderate knowledge and neutral attitude toward palliative care. Further awareness campaigns should be conducted to raise the awareness of the Jordanian society regarding the objectives of palliative care.

Background: Sufficient knowledge of end-of-life care, positive attitudes, and emotions regarding death and dying are essential criteria for showcasing favorable palliative care educational results to undergraduate nursing students. However, nursing students have negative attitudes toward end-of-life care and know little about it.

Aim: This study aimed to examine the effect of a repeated standardized patient-based training program (intervention) on nursing students' knowledge, attitudes, and emotions about end-of-life patients.

Method: This study adopted a pretest-posttest quasi-experimental research design. The sample consisted of 50 fourth-year nursing students divided into intervention (n = 25) and control (n = 25) groups. All participants attended the intervention. The intervention group attended the intervention twice, while the control group attended it only once. Data were collected using a personal information form, the Frommelt Attitudes Toward Care of the Dying Scale, the Positive and Negative Affect Schedule, and the End-of-Life Care Nursing Questionnaire. The data were analyzed using descriptive statistics, Pearson's Chi-square test, dependent groups t test, Pearson-Spearman, Mann-Whitney test, Wilcoxon test, and Friedman test.

Results: The intervention helped participants learn more about end-of-life care (χ2 = 27.167, P = .000; F = 42.725, P = .000) and develop more positive attitudes toward end-of-life patients (F = 13.279, P = .000; F = 6.934, P = .000). The intervention also helped participants develop communication skills.

Conclusion: Universities should integrate repeated standardized patient-based into nursing curricula.

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3 weeks, 3-4 MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

Introduction: Over the past 20 years, palliative care in the United States has grown significantly. Yet, access to and/or engagement with palliative care for minoritized persons with serious illness remains limited. In addition, the focus of palliative and end-of-life care research has not historically focused on equity-informed intervention development that collaborates directly with minoritized populations. Equity-informed interventions within palliative and end-of-life care research have the potential to champion collaborations with persons with serious illness and their families to mitigate health inequities. The purpose of this scoping review was to examine and describe the literature on the approaches used in the design and development of palliative and end-of-life care interventions with minoritized populations with serious illness.

Methods: The Joanna Briggs Institute methodology for scoping reviews was followed for tracking and reporting purposes. Included articles were described quantitatively and analyzed qualitatively with content analysis.

Results: Thirty-seven articles met the inclusion criteria: eight used quantitative methods, eight used qualitative methods, ten reported a community-based participatory research method, nine used mixed-methods, and two had research designs that could not be determined. The qualitative analysis revealed three themes: (1) stakeholder involvement and feedback, (2) intervention focus, and (3) target intervention population (population vs healthcare clinician).

Conclusions: Using an equity-informed research approach is vital to improve palliative and end-of-life care interventions for minoritized communities with serious illness. There is also a need for more robust publishing guidelines related to community-based participatory research methods to ensure publication consistency among research teams that employ this complex research method.