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Optimizing patient autonomy in amyotrophic lateral sclerosis: inclusive decision-making in multidisciplinary care
journal contributionposted on 2023-05-20, 10:33 authored by Anne HogdenAnne Hogden
A dynamic and complex condition such as amyotrophic lateral sclerosis (ALS) presents many challenges to patient autonomy in healthcare decision-making. Patients face a range of complex decisions as their condition deteriorates. Yet the nature of the disease, and the impact of the prognosis on patients and their families, undermines patients’ control of their healthcare choices. ALS is a multisystem disorder and has an average survival time of 2–3 years. The absence of a cure, a small number of evidence-based treatment options and a rapidly progressive disease course generate a ‘worst case’ decision-making context. A delayed diagnosis can further complicate decision-making. Achieving a diagnosis can take 12 months or more. If patients have difficulty accepting the diagnosis, their uptake of ALS services may be similarly delayed.
Publication titleNeurodegenerative Disease Management
Department/SchoolAustralian Institute of Health Service Management (AIHSM)
PublisherFuture Medicine Ltd.
Place of publicationUnited Kingdom
Rights statementCopyright 2014 Future Medicine Ltd