Some difficult decisions in ALS/MND

DJ Oliver, MR Turner - Amyotrophic Lateral Sclerosis, 2010 - Taylor & Francis
Those with amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) currently face
inevitable progression of their disease, with increasing immobility and variable problems …

What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

SK Genuis, W Luth, T Bubela, WS Johnston - Muscle & Nerve, 2023 - Wiley Online Library
Abstract Introduction/Aims Health communication is central to effective, supportive
amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited …

[HTML][HTML] Communication about end of life for patients living with amyotrophic lateral sclerosis: a scoping review of the empirical evidence

SK Genuis, W Luth, S Campbell, T Bubela… - Frontiers in …, 2021 - frontiersin.org
Background: Communication about end of life, including advance care planning, life-
sustaining therapies, palliative care, and end-of-life options, is critical for the clinical …

Amyotrophic lateral sclerosis (ALS) health charities are central to ALS care: perspectives of Canadians affected by ALS

M Ahmad, SK Genuis, W Luth, T Bubela… - … Lateral Sclerosis and …, 2023 - Taylor & Francis
Objective Expert consensus guidelines recommend referral of people with amyotrophic
lateral sclerosis (ALS) to ALS health charities for support. Limited research indicates that …

Introduction to public policy of ALS/MND

JE Kurent, D Oliver, RH Blank - Public Policy in ALS/MND Care: An …, 2021 - Springer
This chapter outlines the framework and goals of this cross-national study of amyotrophic
lateral sclerosis/motor neuron disease (ALS/MND) policy. It also describes the key features …

Supportive and palliative care needs in progressive long-term neurological conditions: an overview

J Seymour, P McNamara - Palliative Care in Neurological Disease, 2021 - taylorfrancis.com
This chapter provides an overview of the supportive and palliative care needs and problems
experienced by people with a progressive long-term neurological condition (PLTNC) and …