RESUMO
OBJECTIVE: Multiple system atrophy (MSA) is an incurable neurodegenerative illness in which progressive symptoms, including stridor and acute laryngeal obstruction, occur. Advanced care planning and palliative care discussions in people living with MSA are not well defined. The aim of the present study is to evaluate advanced care planning and current practices in palliative care in MSA to identify opportunities for improving quality of care. METHODS: The study is a retrospective chart review assessing the focus and timing of palliative care discussions in people living with MSA. Some 22 charts were reviewed. RESULTS: A total of 22 patients were included. The most common symptoms were parkinsonism, orthostatic hypotension, GI/GU dysfunction, ataxia and gait impairment. Six patients had stridor. Of the palliative care discussions that took place, the most common topics were diagnosis, symptoms or symptom management, and prognosis. In the majority of patients who died and who had a do-not-attempt-resuscitation order, discussions surrounding resuscitation and goals of care took place only hours before death. CONCLUSIONS: There is no standard approach to advanced care planning and palliative care discussions in people living with MSA. We propose a framework to guide advanced care planning and palliative care discussions in MSA.
Assuntos
Atrofia de Múltiplos Sistemas/psicologia , Atrofia de Múltiplos Sistemas/terapia , Cuidados Paliativos/métodos , Participação do Paciente/métodos , Participação do Paciente/psicologia , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atrofia de Múltiplos Sistemas/fisiopatologia , Sons Respiratórios/fisiopatologia , Estudos Retrospectivos , Transtornos do Sono-Vigília/fisiopatologia , Transtornos do Sono-Vigília/psicologia , Transtornos do Sono-Vigília/terapiaRESUMO
Neurogenic orthostatic hypotension (NOH) is a debilitating condition associated with many central and peripheral neurological disorders. It has a complex pathophysiology and variable clinical presentation, which makes diagnosis and treatment difficult. Neurogenic orthostatic hypotension is often confused with other disorders of orthostatic intolerance, hypovolemic states and systemic conditions. Diagnosis is usually made by an autonomic specialist following characteristic responses to head-up tilt. Symptom control can be achieved through a combination of patient education, nonpharmacologic and pharmacologic therapy. The purpose of this review is to provide the clinician with a practical approach to the diagnosis and management of NOH.