Annals of palliative medicine
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In the recent years, there has been an increase in awareness with regards to the role of palliative care (PC) in management of neurologic diseases. In 1996, the need to incorporate PC in the care for patients with neurologic conditions was recognized by the American Academy of Neurology (AAN) Ethics and Humanities Subcommittee. ⋯ The complexity of managing neurologic patients brings about challenges and ethical issues in this setting. The aim of this review is to discuss and summarize the challenges and ethical issues in the context of PC management of patients with advanced acute, rapidly progressive, slowly-progressive or degenerative neurological conditions that are commonly encountered in practice.
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Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. Our integrative review showed evidence-based MDC, respiratory management and disease-modifying therapy that have improved the outcomes of patients diagnosed with MND. ⋯ In addition, weight maintenance remains critical, as weight loss is associated with more rapid disease progression. The endof- life phase is poorly defined in MND patients and treatment remains challenging, yet effective symptom control through palliative care (PC) is achievable and essential.
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There is growing interest in the application of palliative care principles to improve care for patients and families affected by neurologic diseases. We developed an interdisciplinary outpatient clinic for patients and families affected by neurologic disorders to better address the problems faced by our highest need patients. We have developed and improved this program over the past three years and share several of our most important lessons as well as ongoing challenges and areas where we see our clinic evolving in the future. ⋯ Specialized outpatient palliative care for neurologic disorders fills several important gaps in care for this patient population, provides important educational opportunities for trainees, and creates opportunities for patient and caregiver-centered research. Educational initiatives are needed to train general neurologists in primary palliative care, to train neurologists in specialist palliative care, and to train palliative medicine specialists in neurology. Research is needed to build an evidence base to identify patient and caregiver needs, support specific interventions, and to build more efficient models of care in both academic and community settings.
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Advanced neurology diseases including motor neuron disease (MND) are usually progressive life-limiting illness and could be devastating for patients, families and caregivers. Although medical technologies, such as enteral feeding and non-invasive ventilation, may prolong life expectancy of the patients, their utilization prompts important ethical questions in regard to their quality of life (QoL). Little attention had been paid on how ACP practice would practically help with patients suffering from different neurology diseases. We are unaware of any published studies on ACP practice among patients with different neurology diseases. In our study, we assessed end-of-life (EOL) care preferences, documentation, and communication in patients with various types of advanced neurology diseases. ⋯ EOL decision making in patients with advanced neurology disease is often delayed. This study showed that MND patients are readier to discuss their EOL issues and signed their AD. The NPCT can play a valuable role in EOL discussions in patients with advanced neurology diseases under collaboration between the PC and the neurology teams.