Journal of palliative medicine
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Background: Sleep disturbances, including insomnia, sleep-disordered breathing, and circadian rhythm disorders with potential consequences including excessive daytime somnolence and worsening fatigue, are prevalent yet largely under-measured and therefore under-managed problems in people receiving palliative care. This has the potential to negatively affect the person's functioning and quality of life. Objectives: We aimed to review the current practice of assessment and management of sleep disturbances in people with life-limiting illnesses in Australian and New Zealand palliative care settings, and to define areas for improvement in assessment and management of sleep disturbances and further research. ⋯ Only 40% reported they had access to sleep specialist services for patients. Conclusion: Our findings provide a useful snapshot of current approaches to managing sleep disturbances in palliative care. Gaps in current practice are highlighted, including the lack of structured, clinical assessment, referral pathways, and PCHPs' perceived lack of access to targeted interventions for sleep disturbances.
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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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Background: Foreign national patients and families can face life-limiting illness and end-of-life care far from home; this palliative need has not been well described. Case Description: We present a case of a 20-year-old Ugandan patient diagnosed with metastatic alveolar rhabdomyosarcoma who presented to a pediatric academic medical center in California. Despite treatment, her disease progressed and she was unable to return to Uganda due to symptom burden. ⋯ The family additionally cultivated a support system within the hospital and local African communities. This was illustrated in the memory album the patient created, and in her family's extensive bereavement support. Conclusions: This case explores opportunities for individualized psychosocial care and community-based support to enhance palliative care for foreign national patients and families.
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Background: Life expectancy prediction is important for end-of-life planning. Established methods (Palliative Performance Scale [PPS], Palliative Prognostic Index [PPI]) have been validated for intermediate- to long-term prognoses, but last-weeks-of-life prognosis has not been well studied. Patients admitted to a palliative care facility often have a life expectancy of less than three weeks. ⋯ SPS items provided survival information during the last week of life. Using SPS along with PPS and PPI during the last weeks of life could enable a more precise short-term survival prediction across various end-of-life diagnoses. The translation of this research into clinical practice could lead to a better adapted treatment, the identification of a most appropriate care setting for patients, and improved communication of prognosis with patients and families.
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Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective: To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child. ⋯ Stress was moderate at admission (mean 6.8, standard deviation [SD] ±1.7) and discharge (mean 6, SD ±2); 32% (n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to "good parent" attributes. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes.