Journal of palliative medicine
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Background: Research on health-related quality of life (HRQoL) is crucial for developing comprehensive palliative care in idiopathic pulmonary fibrosis (IPF). Objectives: To study IPF patients' HRQoL compared with general population and its association with dyspnea in a longitudinal follow-up. Design: Assessment of IPF patients' HRQoL by a generic tool. ⋯ Seven and two dimensions of HRQoL significantly declined in the categories of MMRC <2 and MMRC ≥2, respectively. Conclusions: Patients with IPF, especially if dyspnea limits everyday life, suffer from widely impaired HRQoL, although self-assessed mental capability is preserved. Integrated palliative care is supported to face the multiple needs of IPF patients.
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Introduction: This pilot study tested the feasibility and acceptability of a low-resource-intensive scalable online communication training designed to improve oncologists' skills in prognostic and value-concordant care discussions with advanced cancer patients. Methods: The training consisted of on-demand videos on how to convey prognostic information, manage patient emotions, and elicit patient values and incorporate these values into treatment decision making. ⋯ Most oncologists reported the intervention was acceptable: 92.9% indicated the intervention was "moderately" to "very helpful"; 78.6% rated it as "somewhat" to "very much" impactful on their communication with patients. Conclusions: The present self-paced online communication training was acceptable to oncologists, supporting additional research, including evaluating intervention efficacy for improving oncologists' communication skills and value-concordant care in advanced cancer.
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Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers.
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. Methods: A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. ⋯ Language barriers and cultural differences were also cited. Conclusions: This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.
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Background: In order to improve early access to palliative care, strategies for monitoring referral practices in real-time are needed. Objective: To evaluate how Australia-Modified Karnofsky Performance Status (AKPS) at the time of initial palliative care consult differs between serious illnesses and could be used to identify opportunities for earlier referral. Methods: We retrospectively evaluated data from an inpatient palliative care consult registry. ⋯ Results: The AKPS distribution varied substantially between the different serious illnesses (p < 0.001). While patients with cancer and heart disease often had preserved functional status, the majority of patients with dementia, neurological, lung, liver, and renal disease were already completely bedbound at the time of initial palliative care consult. Conclusion: Measuring functional status at the time of palliative care referral could be helpful for monitoring referral practices and identifying opportunities for earlier referral.
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Observational Study
Changes in the Place of Death and Implications for End-of-Life Care Policy: A Population-Based Observational Study.
Background: Death in hospital rather than at home is becoming more prevalent, even among terminally ill patients receiving home-based care. Identifying trends in places of death is crucial to care policy, especially for aging populations as in Taiwan. Aim: To identify changes in the places of natural death of Taiwanese individuals for various causes of death. ⋯ We applied the joinpoint regression model to estimate trend changes in places of death. During the study period, the places of death in Taiwan changed significantly, the average annual percent changes for hospital deaths over the 21-year period was 2.54% (confidence interval [CI]: 2.04 to 3.03), and for home deaths was -2.69% (CI: -3.26 to -2.13). Conclusions: The detailed findings of this national study can offer insight into potential future clinical burdens and lead to better health policy decisions for Taiwan.