Journal of palliative medicine
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Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. ⋯ Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care.
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Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. ⋯ Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.
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Background: Jordan faces complex health care challenges due to refugee influx and an aging population. Palliative care planning and delivery require data to ensure services respond to changing population needs. Objectives: To determine the trend in mortality and place of death in Jordan. ⋯ Conclusions: Country-level palliative care development must respond to both internal (aging) and external (refugee influx) population trends. Universal Health Coverage requires palliative care to move beyond cancer and meet population-specific needs. Community-based services should be prioritized and expanded to care for the patients with nonischemic heart disease, atherosclerosis, renal failure, hemorrhagic fevers, and injury.
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Background: With support from the Radcliffe Institute for Advanced Study at Harvard University, we convened researchers representing palliative care, psychosocial oncology, spiritual care, oncology, and psychedelic-assisted therapies. We aimed to define priorities and envision an agenda for future research on psychedelic-assisted therapies in patients with serious illness. Over two days in January 2020, participants engaged in an iterative series of reflective exercises that elicited their attitude and perspectives on scientific opportunities for this research. ⋯ Additionally, participants suggested epistemological limitations of the medical model to understand the potential value and therapeutic use of psychedelics. Conclusions: Medicine and society are witnessing a resurgence of interest in the effects and applications of psychedelic-assisted therapies in a wide range of settings. This article suggests key opportunities for research in psychedelic-assisted therapies for those affected by serious illness.
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Observational Study
Feasibility and Clinical Usefulness of a Novel Nonwearable Sheet-Type Monitor (Nemuri SCAN): Prognostic Value of Increased Respiratory Rate in Actively Dying Patients.
Objective: The objective of this study was to explore the feasibility of monitoring actively dying patients hospitalized in a palliative care unit using a nonwearable sheet-type monitor that measured the state of sleep and vital signs per minute. In addition, we aimed to clarify the incidence of increased respiratory rate and its relationship with survival time. Design and Measurement: This study was conducted at a 51-bed palliative care unit in Japan from April 2018 through October 2019. ⋯ The cumulative incidence of increased respiratory rate (defined as more than 30 respiratory rate per minute) was 63.16% during the observational period, and the mean time between appearance of increased respiratory rate and death was 4.17 ± 4.04 days. Conclusion: This study clearly shows that hospitalized actively dying patients can be monitored using a nonwearable sheet-type monitor that measures sleeping state and vital signs per minute. Further studies are needed to utilize these noninvasive continuous monitoring devices in daily clinical practice.