Journal of palliative medicine
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Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. ⋯ The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.
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Background: Within palliative care research, best practice guidelines to conduct scientifically rigorous clinical trials for neurodegenerative diseases are underexplored. This patient population experiences unique challenges, including fluctuations in cognitive capacity, care partner (CP) and proxy involvement, and high adverse events (AEs), that necessitate special consideration when designing clinical trials. Objective: The objective of this study was to describe and identify clinical trial design features that have been documented in studies involving a neuropalliative intervention for persons with neurodegenerative diseases, highlighting features that have been adapted for this unique patient population. ⋯ Conclusions: To date, neuropalliative care clinical trials have had varied study designs and the majority of research has focused on dementia. Research guideline development for high-quality neuropalliative care clinical trials is greatly needed across the range of neurodegenerative diseases. To increase the scientific rigor of clinical trials and neuropalliative care, we recommend a standardized capacity assessment for consent, defining conditions for the CP, proxy, and AEs, systematizing appropriate comparators, and outlining preemptive recruitment and retention strategies to address the broader unpredictable challenges of palliative care research.
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Multicenter Study
Rapid Response System and Limitations of Medical Treatment Among Children With Clinical Deterioration in Japan: A Multicenter Retrospective Cohort Study.
Objective: We investigated the role of rapid response systems (RRSs) in limitations of medical treatment (LOMT) planning among children, their families, and health care providers. Methods: This multicenter retrospective cohort study examined children with clinical deterioration using the Japanese RRS registry between 2012 and 2021. Results: Children (n = 348) at 28 hospitals in Japan who required RRS calls were analyzed. ⋯ Patients with LOMT were significantly less likely to be admitted to an intensive care unit compared with those without (36% vs. 61%, p < 0.001) and were more likely to die within 30 days (45% vs. 11%, p < 0.001). Conclusions: LOMT issues existed in 6% of children who received RRS calls. RRS calls for clinically deteriorating children with LOMT were associated with less intensive care and higher mortality.
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Background: Patients with life-limiting illnesses receiving palliative care have a high symptom burden that can be challenging to manage. Guided imagery (GI), a complementary and integrative therapy in which patients are induced to picture mental images with sensory components, has proven in quasi-experimental studies to be effective as a complementary therapy for symptom management. Objective: To systematically review randomized controlled trials that report evidence of guided imagery for symptom management in patients with life-limiting illnesses. ⋯ GI was found to be effective in managing symptoms in 10 out of the 14 studies. Regardless of the disease stage, patients who received guided imagery experienced relief from anxiety, depression, pain, sleep disturbances, and fatigue. Conclusion: GI therapy has shown promising results regarding symptom management in palliative care patients with life-limiting illnesses at different stages.
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Randomized Controlled Trial
Effectiveness of an Algorithmic Approach to Ventilator Withdrawal at the End of Life: A Stepped Wedge Cluster Randomized Trial.
Background: The transition to spontaneous breathing puts patients who are undergoing ventilator withdrawal at high risk for developing respiratory distress. A patient-centered algorithmic approach could standardize this process and meet unique patient needs because a single approach (weaning vs. one-step extubation) does not capture the needs of a heterogenous population undergoing this palliative procedure. Objectives: (1) Demonstrate that the algorithmic approach can be effective to ensure greater patient respiratory comfort compared to usual care; (2) determine differences in opioid or benzodiazepine use; (3) predict factors associated with duration of survival. ⋯ Conclusions: The algorithm was effective in ensuring patient respiratory comfort. Surprisingly, more medication was given in the usual care arm; however, less may be needed when distress is objectively measured (RDOS), and treatment is initiated as soon as distress develops as in the algorithm. Clinical Trial Registration number: NCT03121391.