Breaking the news in amyotrophic lateral sclerosis

Telling the diagnosis to patients with amyotrophic lateral sclerosis (ALS) is a daunting task for any neurologist. Obviously, breaking the news in ALS is not a standardizable procedure. However, proven techniques exist to reduce the trauma to the patient and ease the burden on the doctor, thus reduc...

Full description

Saved in:
Bibliographic Details
Published in:Journal of the neurological sciences 1998-10, Vol.160, p.S127-S133
Main Authors: Borasio, Gian Domenico, Sloan, Richard, Pongratz, Dieter E
Format: Article
Language:English
Subjects:
Amyotrophic Lateral Sclerosis - diagnosis
Amyotrophic Lateral Sclerosis - psychology
Bad news
Biological and medical sciences
Communication
Communication skills
Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases
Humans
Medical sciences
Motor neurone disease
Neurology
Palliative care
Patient Care Planning
Physician-Patient Relations
Prognosis
Telling the diagnosis
Citations: Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:Telling the diagnosis to patients with amyotrophic lateral sclerosis (ALS) is a daunting task for any neurologist. Obviously, breaking the news in ALS is not a standardizable procedure. However, proven techniques exist to reduce the trauma to the patient and ease the burden on the doctor, thus reducing the risk of burnout and the tendency to `pull away' from the patient. Such communication skills are of fundamental importance to clinical practice and should be more prominent in medical teaching. The way the patient is told the diagnosis is now recognized to be the first and one of the most delicate steps in palliative care. Information is best offered in a stepwise fashion at the patient's pace with an emphasis on positive aspects, and in the presence of the patient's family. Reviewing available therapeutic options and current research efforts may foster hope for the future, while pointing out that almost all symptoms of ALS can be alleviated by palliative therapy may help to reduce fears. Encouraging patients to ask questions and disclose anxieties is important for their psychological wellbeing. Available options for mechanical ventilation should be reviewed early enough to allow for unhurried decision-making. We believe that the terminal phase of the disease should be discussed at the latest when dyspneic symptoms appear, in order to prevent unwarranted fears of `choking to death'.
ISSN:0022-510X
1878-5883
DOI:10.1016/S0022-510X(98)00211-1