ABSTRACT
The roles of different members of the team will vary as the disease progresses - and the problems faced by the person and their family changes. The diagnosis of Amyotrophic Lateral Sclerosis (ALS) is often a shock to both patient and family. It may be unknown to them all, and may lead to particular fears and concerns. The recent interest and high-profile court cases, regarding euthanasia and physician-assisted suicide, have engendered increased fears about ALS, as there is discussion of the ‘distress’ of the disease and its progression. The insertion of a feeding tube - either a percutaneous endoscopic gastrostomy or a radiologically inserted gastrostomy — should be considered early and insertion arranged before respiratory function has deteriorated too much, as there is increased risk if the forced vital capacity is less than 50% of expected. Dyspnea is a problem faced by up to 85% of those with ALS and may be helped by opioids.
