Journal of palliative medicine
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Background: Amyotrophic lateral sclerosis (ALS) is an aggressive, terminal neurodegenerative disease that causes death of motor neurons and has an average survival time of 3-4 years. ALS is the most common motor neuron degenerative disease and is increasing in prevalence. There is a pressing need for more effective ALS treatments as available pharmacotherapies do not reverse disease progression or provide substantial clinical benefit. ⋯ Furthermore, relevant neuroprotective properties of psychedelics warrant future preclinical trials to investigate this area in ALS models. Conclusion: PAP has the potential to serve as an effective treatment in ALS. Given the lack of effective treatment options, researchers should rigorously explore this therapy for ALS in future trials.
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Background: Little is known about the patient-reported quality of and satisfaction with advance care planning (ACP) conversations with surrogates and clinicians among English- and Spanish-speaking older adults, or the potential disparities associated with ACP communication satisfaction. Objectives: To determine patients' perceived quality of and satisfaction with ACP surrogate/clinician conversations and associated patient characteristics. Design: Cross-sectional baseline data were used from two ACP trials, 2013-2017. ⋯ Higher quality detailed conversations resulted in greater communication satisfaction. Interventions are needed to improve conversation quality, particularly for Spanish-speaking patients and those with limited health literacy. Trial Registrations: ClinicalTrials.gov identifiers: "Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)" NCT01990235 and "Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)" NCT02072941.
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Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI while the loss is devastating for families. The aim of the study is to characterize the pediatric population and formulate referral criteria for palliative care (PC) consults who would guide the most beneficial allocation of resources. ⋯ Discussion: PC programs are a finite resource and should be available to and focused on those with greatest need. The proposed criteria provide empirically based guidance on when to consult, or consider consulting, specialist pediatric PC. Further testing of these criteria and their relationship with improved outcomes are desirable.
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Background: Research on health-related quality of life (HRQoL) is crucial for developing comprehensive palliative care in idiopathic pulmonary fibrosis (IPF). Objectives: To study IPF patients' HRQoL compared with general population and its association with dyspnea in a longitudinal follow-up. Design: Assessment of IPF patients' HRQoL by a generic tool. ⋯ Seven and two dimensions of HRQoL significantly declined in the categories of MMRC <2 and MMRC ≥2, respectively. Conclusions: Patients with IPF, especially if dyspnea limits everyday life, suffer from widely impaired HRQoL, although self-assessed mental capability is preserved. Integrated palliative care is supported to face the multiple needs of IPF patients.
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Observational Study
Changes in the Place of Death and Implications for End-of-Life Care Policy: A Population-Based Observational Study.
Background: Death in hospital rather than at home is becoming more prevalent, even among terminally ill patients receiving home-based care. Identifying trends in places of death is crucial to care policy, especially for aging populations as in Taiwan. Aim: To identify changes in the places of natural death of Taiwanese individuals for various causes of death. ⋯ We applied the joinpoint regression model to estimate trend changes in places of death. During the study period, the places of death in Taiwan changed significantly, the average annual percent changes for hospital deaths over the 21-year period was 2.54% (confidence interval [CI]: 2.04 to 3.03), and for home deaths was -2.69% (CI: -3.26 to -2.13). Conclusions: The detailed findings of this national study can offer insight into potential future clinical burdens and lead to better health policy decisions for Taiwan.