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Background: Palliative care (PC) benefits patients with amyotrophic lateral sclerosis (ALS), however the needs of patients and caregivers and the optimal timing of PC discussions remains unclear. This study reports the analysis of PC consult notes from a larger feasibility trial. The specific aims of this analysis were to i) identify the PC needs of patients with ALS via qualitative analysis and ii) identify characteristics of patients and caregivers that could predict specific PC needs., Methods: This study was nested within a nonrandomized, prospective study of patients with ALS (and their caregivers) being treated at a multidisciplinary ALS clinic. Exclusion criteria of the main study were age <18 years, inability to complete questionnaires, and prior receipt of PC. All patients were offered a PC consultation (PCC); those who accepted were included in this nested study. Consultation notes were reviewed and thematic and content analyses were conducted. The occurrence of themes across patient and caregiver contextual variables were examined., Results: Thirty-two PCCs were completed between October 2020 and April 2022. Six major themes were identified: PC roles (with subthemes encompassing the spectrum of specialist PC practice including symptom management and advance care planning), engagement with PC, patients' concerns for their caregivers, caregiver-specific concerns, finances, and COVID-19. An average of 12 topics were discussed per PCC (range = 3-22). Discussion of advance care planning, care coordination, and symptom management was common, and these topics were not discussed more frequently in PCCs with patients with lower functional status, more bulbar symptoms, or lower quality of life. Time from diagnosis did not impact topics of discussion. Patients reporting more symptoms of depression more frequently required psychological support, particularly regarding loss of independence, employment, and leisure activities., Discussion: Patients with ALS and their caregivers have a wide range of PC needs. These needs vary irrespective of time from diagnosis, functional status, or quality of life, therefore PCC is recommended for all patients with ALS. PCC should be individualized based on patient and caregiver preferences., Trial Registration Information: The study was registered with ClinicalTrials.gov (NCT04257760; https://clinicaltrials.gov/ct2/show/NCT04257760) on February 6, 2020. The first enrollment occurred on October 20, 2020., (Crown Copyright © 2024. Published by Elsevier Inc. All rights reserved.)

Context: Parkinson's disease (PD) is the second most common neurodegenerative disorder worldwide. Oral medications for control of motor symptoms are the mainstay of treatment. However, as the disease progresses, patients with PD may develop dysphagia that prohibits them from safely taking oral medications. Currently there are no clinical guidelines for managing distressing motor symptoms in patients with PD and severe dysphagia, which can therefore be quite challenging. Objectives: To provide an exhaustive summary of current literature on pharmacological interventions for patients with PD who do not have safe oral access in managing distressing motor symptoms. Indication, route, doses, frequency, outcome, and adverse effects will be discussed. Methods: A scoping review using Medline, Embase, CENTRAL, CINAHL, AgeLine, and PsycINFO databases (1946–2021) was conducted. Articles examining patients with PD and dysphagia who are eligible to receive palliative care or at end of life were included. Studies that included patients who were also on oral PD medications or received device-aided therapy were excluded from this review. Results: A total of 3821 articles were screened for title and abstract, 259 were selected for full-text review, and 20 articles were selected for data extraction. These included five case reports, one retrospective cohort study, one book chapter, and 13 narrative reviews. There are very few articles addressing the issue of treatment of patients with advanced PD who are unable to take oral medications. Although rotigotine patch and apormorphine injections are most frequently recommended, there are no clinical trials in this patient population to support those recommendations. Conclusion: This study highlights a need for further research examining the efficacy and dosing of nonoral medications in advanced PD with dysphagia. [ABSTRACT FROM AUTHOR]

The use of intravenous inotropic medications in advanced heart failure (HF) has been shown to improve symptoms and decrease hospitalizations, prompting support for their use as a palliative measure for symptom management. Recommendations regarding inotrope management and method of discontinuation at the end of life are not specifically detailed in the literature and current guidelines. This case report describes the use of milrinone in a patient with advanced HF during the terminal phase of illness in a non-monitored palliative care unit setting, including dose reduction and discontinuation of milrinone. Increased patient anxiety during the weaning process was managed with midazolam. The provision of individualized milrinone therapy in non-monitored palliative care settings is feasible and well-tolerated using the presented detailed recommendations for its use and administration, monitoring, dose reduction and discontinuation and proactive symptom management at the end of life. Further research is needed for the optimal management of terminally ill patients with advanced HF. Supplemental data for this article is available online at here. show [ABSTRACT FROM AUTHOR]

Background: Delirium is a distressing neuropsychiatric disorder affecting patients in palliative care. Although many delirium screening tools exist, their utility, and validation within palliative care settings has not undergone systematic review. Aim: To systematically review studies that validate delirium screening tools conducted in palliative care settings. Design: Systematic review with narrative synthesis (PROSPERO ID: CRD42019125481). A risk of bias assessment via Quality Assessment Tool for Diagnostic Accuracy Studies-2 was performed. Data sources: Five electronic databases were systematically searched (January 1, 1982–May 3, 2020). Quantitative studies validating a screening tool in adult palliative care patient populations were included. Studies involving alcohol withdrawal, critical or perioperative care were excluded. Results: Dual-reviewer screening of 3749 unique titles and abstracts identified 95 studies for full-text review and of these, 17 studies of 14 screening tools were included (n = 3496 patients). Data analyses revealed substantial heterogeneity in patient demographics and variability in screening and diagnostic practices that limited generalizability between study populations and care settings. A risk of bias assessment revealed methodological and reporting deficits, with only 3/17 studies at low risk of bias. Conclusions: The processes of selecting a delirium screening tool and determining optimal screening practices in palliative care are complex. One tool is unlikely to fit the needs of the entire palliative care population across all palliative care settings. Further research should be directed at evaluating and/or adapting screening tools and practices to fit the needs of specific palliative care settings and populations. [ABSTRACT FROM AUTHOR]

Background: Delirium is a common and distressing neurocognitive condition that frequently affects patients in palliative care settings and is often underdiagnosed. Aim: Expanding on a 2013 review, this systematic review examines the incidence and prevalence of delirium across all palliative care settings. Design: This systematic review and meta-analyses were prospectively registered with PROSPERO and included a risk of bias assessment. Data sources: Five electronic databases were examined for primary research studies published between 1980 and 2018. Studies on adult, non-intensive care and non-postoperative populations, either receiving or eligible to receive palliative care, underwent dual reviewer screening and data extraction. Studies using standardized delirium diagnostic criteria or valid assessment tools were included. Results: Following initial screening of 2596 records, and full-text screening of 153 papers, 42 studies were included. Patient populations diagnosed with predominantly cancer (n = 34) and mixed diagnoses (n = 8) were represented. Delirium point prevalence estimates were 4%–12% in the community, 9%–57% across hospital palliative care consultative services, and 6%–74% in inpatient palliative care units. The prevalence of delirium prior to death across all palliative care settings (n = 8) was 42%–88%. Pooled point prevalence on admission to inpatient palliative care units was 35% (confidence interval = 0.29–0.40, n = 14). Only one study had an overall low risk of bias. Varying delirium screening and diagnostic practices were used. Conclusion: Delirium is prevalent across all palliative care settings, with one-third of patients delirious at the time of admission to inpatient palliative care. Study heterogeneity limits meta-analyses and highlights the future need for rigorous studies. [ABSTRACT FROM AUTHOR]

Context: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited.Objectives: To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature.Methods: A scoping review using MEDLINE, EMBASE, CINAHL and PsycINFO databases (2000-2019) was conducted. Articles examining PC information needs as stated by ALS patients and/or current/bereaved caregivers were included. Studies examining other diagnoses and those focused on healthcare workers were excluded. Thematic synthesis was used to summarize and identify prevalent domains and themes in the literature.Results: 581 articles underwent primary screening, with thirty-two ultimately included (26 original articles, six reviews). Fourteen examined information needs of both patients and caregivers, 13 caregivers only, 5 patients only. The most common PC information needs were as follows: for patients, disease course/prognosis (n = 10), general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 10). There was substantial variability in information needs, both between patients and caregivers and among members of the same group.Conclusion: ALS patients and caregivers have unique and varying PC information needs. Future research should better characterize these needs to improve patient and caregiver quality of life. The delivery of information must be tailored to individual patient or caregiver preferences. [ABSTRACT FROM AUTHOR]