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: Necrotizing 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.
Methods: In 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.
Results: Among 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.
Conclusions: Our 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(s): The majority of deaths in Singapore (62.1%) occur in the hospital, but most nurses do not have palliative care (PC) education. An online e-learning course, "Essential Palliative Care Approach for Nurses" (EPAN), was developed to close the learning gap. The study aimed to evaluate the impact of EPAN on general nurses' knowledge, confidence, and attitude in delivering end-of-life care. Methods: Convergent parallel mixed methods design. Results: 1708 nurses (67%), mostly from inpatient and ambulatory settings, completed EPAN. Statistically significant increases in mean scores across knowledge, confidence, and attitude (p < 0.05) remained consistent immediately post-course and 3 months post-course. Respondents shared their intentions to change practice in the immediate post-course survey (n = 1155) and how they have practiced end-of-life care in the 3-month post-course survey (n = 777). Major categories from the content analysis included: (i) actualise confidence to deliver effective communication, (ii) making time and showing empathy in end-of-life care, (iii) advocating for end-of-life care, (iv) proactive collaboration with other healthcare professionals, (v) navigated and accepted end-of-life boundaries, and (vi) able to self-manage emotions. Conclusions: EPAN, developed within an Asian context, has demonstrated a significant impact on nurses' knowledge, confidence, and attitude in delivering end-of-life care. This has broader implications for general palliative care education in countries of similar cultural concerns.
Objective: Identifying research priorities is very important for palliative and end-of-life care to ensure research is focused on evidence gaps. This project aimed to identify and prioritise palliative and end-of-life care research areas within the West Midlands region in United Kingdom (UK).
Methods: A modified Delphi technique approach was used with palliative care stakeholders. The first round was item generation via rapid interviews. Data were analysed using content analysis and all the items were grouped into main categories. For round two, an online survey was conducted to present all the items from round one, and stakeholders were asked to rate the priority of items on a Likert-type scale (1 = not a priority to 7 = essential priority). Items that achieved consensus in round two were presented to the third round, where stakeholders ranked them in descending order.
Results: We completed and analysed 56 rapid interviews which resulted in 158 research items under 15 categories. The research items were rated by 30 stakeholders and seven items which reached consensus were subsequently ranked in order by 45 stakeholders. The highest ranked item was 'Integrated care systems to prevent crisis', followed by three research items related to 'equity' in palliative care.
Conclusions: Our research priorities, although unique for our region, mirror previously research priorities from other regions and countries. This suggests issues of integration and equity in palliative and end-of-life care remain unresolved, despite ongoing initiatives and research to address these issues.
Objective: Some patients with cancer admitted to palliative care have relatively long survivals of 1 year or more. The objective of this study was to find out factors associated with prolonged survival. Methods: Retrospective case-control study comparing the available data of patients with cancer who survived more than 1 year after admission in a palliative care service with patients with cancer who survived 6 months or less. The intended proportion was 4 controls for each case. Patients were identified through electronic records from 2012 until 2018. Results: And 1721 patients were identified. Of those patients, 111 (6.4%) survived for at least 1 year, and 363 (21.1%) were included as controls according to the established criteria. The intended proportion could not be reached; the proportion was only 3.3:1. The median survival of cases was 581 days (range: 371-2763), and the median survival of controls was 57 days (range: 1-182). In the multivariable analysis, patients with a hemoglobin ≥ 10.6 g/dL and a creatinine level >95 µmol/L had a higher probability of living more than 1 year. In contrast, patients with abnormal cognition, pain, anorexia, liver metastases, an Eastern Cooperative Oncology Group performance status >1, and a neutrophil/lymphocyte ratio ≥ 3.43 had a low probability of living more than 1 year. Conclusion: Several factors were statistically associated positively or negatively with prolonged survival. However, the data of this study should be confirmed in other studies.
Objective: The Palliative Performance Scale (PPS) has been reported to be as accurate as Palliative Prognostic Index (PPI). PPS is a component of the simplified PPI (sPPI). It is unknown whether PPS is as accurate as sPPI. This study aimed to compare the prognostic performance of the PPS and sPPI in patients with advanced cancer in a home palliative care setting in South Korea. Methods: This was a secondary analysis of a prospective cohort study that included Korean patients with advanced cancer who received home-based palliative care. We used the medical records maintained by specialized palliative care nurses. We computed the prognostic performance of PPS and sPPI using the area under the receiver operating characteristic curve (AUROC) and calibration plots for the 3- and 6-week survival. Results: A total of 80 patients were included, with a median overall survival of 47.0 days. The AUROCs of PPS were 0.71 and 0.69 at the 3- and 6-week survival predictions, respectively. The AUROCs of sPPI were 0.87 and 0.73 at the 3- and 6-week survival predictions, respectively. The calibration plot demonstrated satisfactory agreement across all score ranges for both the PPS and sPPI. Conclusions: This study showed that the sPPI assessed by nurses was more accurate than the PPS in a home palliative care setting in predicting the 3-week survival in patients with advanced cancer. The PPS can be used for a quick assessment.
Objectives: Cancer patients try to find answers in the light of their individual experiences and if they cannot adapt in line with the answers, various psychiatric symptoms may occur. There are studies supporting that "forgiveness" helps reduce the emotional burden of patients with cancer in their ability to discomfort intolerance of the disease, find meaning in the life. The aim of this study is to evaluate forgiveness, discomfort intolerance, and psychiatric symptoms in cancer patients. Methods: The data of this study, which was conducted with 208 cancer patients receiving outpatient chemotherapy treatment, Personal Information Form was collected with Heartland Forgiveness Scale, Brief Symptom Inventory, and Discomfort Intolerance Scale. Result: It has been determined that cancer patients have a high level of forgiveness, a moderate tolerance to tolerate discomfort, and enable low level of occurrence of psychiatric symptoms. As the level of self-forgiveness and forgiveness of patients increases, the incidence of psychiatric symptoms decreases. Conclusion: In line with the findings, it can be thought that the high level of forgiveness of cancer patients towards their illness allows them to experience less psychiatric symptoms and increase their tolerance to the disorder. Awareness of both patients and healthcare personnel can be increased by preparing training programs that address forgiveness in individuals diagnosed with cancer in healthcare institutions.
Objective: To study whether E-learning methods are feasible in the post-graduate education of palliative medicine. Methods: A mixed-methods study. Evaluations from pilot course attendees were analyzed numerically and answers to open-ended questions about E-learning were analyzed using inductive content analysis. A national pilot E-learning-based post-graduate course in palliative medicine with 24 participating physicians in Finland. The evaluation of teaching modules and different aspects of the course was achieved from the participants through numerical statements and open-ended questions. Results: The feedback on most aspects of the course was good. For example, issues of pain and symptom control, lectures, pre-exams, and group discussions were deemed suitable for E-learning, while studying communication and existential issues through E-learning was considered more challenging. The benefits of E-learning included efficacy, better accessibility, and the possibility to go back to the teaching material. Reduced networking and face-to-face interactions were stated as challenges of E-learning. Conclusions: E-learning is feasible in the post-graduate education of palliative medicine and can be 'surprisingly rewarding'. It allows easy access to learn many important topics, while social networking may fall short. Further studies are needed to assess the increase in competence by different learning methods.
Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.