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.

Item Type:	Refereed Article
Keywords:	patient-centred decision-making, multidisciplinary care
Research Division:	Biomedical and Clinical Sciences
Research Group:	Neurosciences
Research Field:	Neurology and neuromuscular diseases
Objective Division:	Health
Objective Group:	Provision of health and support services
Objective Field:	Palliative care
UTAS Author:	Hogden, A (Dr Anne Hogden)
ID Code:	137220
Year Published:	2014
Deposited By:	Australian Institute of Health Service Management
Deposited On:	2020-02-05
Last Modified:	2020-07-28
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