Journal of pain and symptom management
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J Pain Symptom Manage · Feb 2023
ReviewA Systematic Review of Stakeholder Perspectives of Dignity and Assisted Dying.
The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients. ⋯ Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.
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J Pain Symptom Manage · Feb 2023
ReviewDesign Considerations for Embedded Pragmatic Clinical Trials of Advance Care Planning Interventions for Persons Living With Dementia.
Advance care planning (ACP) is an important part of comprehensive care for persons living with dementia (PLWD). While many trials have established the efficacy of ACP in improving end-of-life communication and documentation of care preferences, there remains a gap in clinical usage. Embedded pragmatic clinical trials (ePCTs) may facilitate the uptake of evidence-based care into existing healthcare by deploying efficacious ACP interventions into real-world settings. ⋯ These considerations are weighed in further detail by describing the approaches from three published trials. Specifically, we consider how potential challenges were overcome by tradeoffs in study design. Finally, we offer directions for future growth to advance ePCTs for ACP among PLWD and catalyze future research.
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J Pain Symptom Manage · Feb 2023
Multicenter StudyVaccine preventable diseases in pediatric palliative care - a multicenter cross-sectional study.
Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance. ⋯ Children and adolescents with life-limiting conditions are at increased risk of vaccine preventable diseases. Individual vaccination counselling is recommended.
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J Pain Symptom Manage · Feb 2023
Patient-reported Quality Measures for Palliative Care: The time is now.
While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. ⋯ These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.
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J Pain Symptom Manage · Feb 2023
Anticholinergic Medications and Parent-Reported Anticholinergic Symptoms in Neurologically Impaired Children.
Children with severe neurological impairment and polypharmacy are exposed to anticholinergic (AC) medications that may have anticholinergic side effects, but this is understudied. Anticholinergic Cognitive Burden (ACB) scores measure total anticholinergic burden for a medication regimen, and scores ≥3 have been associated with increased morbidity and mortality in adults. ⋯ If replicated in larger populations, the association between elevated total ACB scores and anticholinergic side effects in children should prompt clinicians to consider deprescribing potentially unneeded anticholinergic medications.