Article

Amyotrophic lateral sclerosis (ALS) is not a curable disease, but it is
treatable. By definition, much of the care provided to ALS patients is
palliative, even though active life-sustaining strategies are available to
prolong survival. Healthcare professionals must develop communication skills that
help patients cope with the inexorable progression of the disease and the
inevitability of death. Symptomatic treatments as well as respiratory
insufficiency and nutritional life-sustaining therapies must be regularly
evaluated as the disease progresses, without losing sight of the burden placed on
the patient's non-professional caregivers. The decision-making process regarding
tracheostomy with invasive ventilation (TIV) is of greater complexity. Providing
full information is crucial. Several long interviews are necessary to explain,
discuss and allow assimilation of the information. Also, physicians should be
careful not to focus exclusively on the biomedical aspects of disease, as ALS
patients generally welcome the opportunity to discuss end-of-life issues with
their physicians. Psychological factors, education level and cognitive status
(especially the level of executive dysfunction) have a major influence on their
decisions. However, as many patients do not complete advance directives with
regard to TIV, advance care planning may instead be suggested in anticipation of
emergency interventions. This should be discussed by healthcare professionals and
the patient, and based on the wishes of the patient and caregiver(s), and
communicated to all healthcare professionals. Many healthcare professionals are
involved in the management of an ALS patient: they include not only those at ALS
centers who provide diagnosis, follow-up and treatment initiation (particularly
for respiratory and nutritional care), but also the medical and social care
networks involved in disability support and home care. Specialist palliative care
teams can work in partnership with ALS centers early in the course of the
disease, with the center coordinating information-sharing and collaborative
discussions.
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Langue : ANGLAIS