Journal of palliative medicine
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Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design: Mixed methods design was used to analyze data from the cross-sectional Survey of Caring for Children with CCCs. ⋯ Within goals of care, two subthemes arose: (a) technology was necessary to give time for life extension and/or to say goodbye, and (b) technology greatly impacted the child's quality of life and symptoms. Conclusions: Parents have nuanced perspectives about the benefits and burdens of technology. It is essential to understand parent's most important goals when supporting decisions about technology assistance for children with CCCs.
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Multicenter Study
Death and Dying in Hospitalized Pediatric Patients: A Prospective Multicenter, Multinational Study.
Background: For hospitalized children admitted outside of a critical care unit, the location, mode of death, "do-not-resuscitate" order (DNR) use, and involvement of palliative care teams have not been described across high-income countries. Objective: To describe location of death, patient and terminal care plan characteristics of pediatric inpatient deaths inside and outside the pediatric intensive care unit (PICU). Design: Secondary analysis of inpatient deaths in the Evaluating Processes of Care and Outcomes of Children in Hospital (EPOCH) randomized controlled trial. ⋯ Hospital palliative care consultation was more common in older children and independently associated with a lower adjusted odds (95% confidence interval) of dying in PICU [0.59 (0.52-0.68)]. Conclusion: Most pediatric inpatient deaths occur in PICU where patients were less likely to have a DNR or palliative care consult. Palliative care consultation could be better integrated into end-of-life care for younger children and those dying in PICU.
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Assessment of spiritual suffering and provision of spiritual care are a central component of palliative care (PC). Unfortunately, many PC clinicians, like most medical providers, have received limited or superficial training in spirituality and spiritual distress. This article, written by a group of spiritual care providers, and other PC and hospice clinicians, offers a more in-depth look at religion and spirituality to help to enhance readers' current skills while offering a practical roadmap for screening for spiritual distress and an overview of partnering with colleagues to ensure patients receive values-aligned spiritual care provision.
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Background: Peripheral artery disease (PAD) encompasses conditions with poor outcome and severe suffering, both mentally and physically, yet utilization and research into palliative care interventions remain sparse. Objective: The purpose of this study is to identify existing evidence on palliative care intervention for chronic limb threatening ischaemia (CLTI) and abdominal aortic aneurysm (AAA). Design: We conducted a PROSPERO-registered systematic review of studies published between 1991 and 2020 in which people with PAD received palliative care interventions and at least one patient outcome was recorded. ⋯ Conclusion: Despite high mortality and morbidity associated with PAD, evidence of the effectiveness of palliative care in this group of patients is lacking. There are only a handful of articles on palliative care for people with PAD, and the majority are small, methodologically flawed and lack meaningful patient-reported outcomes. High-quality research of palliative care interventions in patients with PAD is urgently needed to better understand the impact of palliative care on quality of end of life and to develop and evaluate service-level interventions.
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Surviving Long Enough to Die? An Analysis of Incomplete Assessments for Medical Assistance in Dying.
Background: Medical assistance in dying (MAiD) was legalized in Canada on June 17, 2016, yet many who request MAiD do not complete the assessment process and instead experience a natural death. This analysis of patients who made a formal request for MAiD aims to clarify timelines and factors associated with completion of the MAiD assessment process, and factors associated with completion or noncompletion of MAiD once eligible. Materials and Methods: This retrospective cohort study included all patients in Nova Scotia who requested MAiD between January 1, 2018 and December 31, 2018, were deceased at the time of analysis, did not withdraw their request, and were not formally deemed ineligible for the procedure (n = 218). ⋯ Those with an incomplete assessment had a median survival from request to death of 8.0 days (interquartile range [IQR] = 11.5), whereas for those deemed eligible, median survival from request to determination of MAiD eligibility was also 8.0 days (IQR = 16.0). Interpretation: Proximity to natural death and poor performance status at the time of MAiD request may drive incomplete MAiD assessments. The majority of patients deemed eligible for MAiD complete the procedure, and as such, patients who did not complete the MAiD assessment process may not have experienced their preferred mode of death.