Palliative care for people with ALS

Abstract

Amyotrophic lateral sclerosis (ALS), also known as the Lou Gehrig’s disease, is a progressive neurological illness that affects the central and the peripheral motor neuron. The central motor neurons set in the brain and in the spinal cord equally degenerate. When the impulses cease to reach the muscles due to the decay of the motor neurons, atrophy of muscles appears as a sign of lesion of the central motor neuron and fasciculation of the skeletal muscles due to the lesion of the peripheral neuron. Other symptoms are consequences of these changes and include muscle weakness, cramping, slurred/ nasal speech, and difficulties in swallowing and breathing. The function of the bulbar musculature and sphincter remains the same, so as the ability to recognize touch, sound, smell, and taste. Mental abilities and consciousness are undamaged. The probability of being diagnosed with this disease is 1-3,9 cases per 100 000 people. The frequency of the illness rises with aging. The cause of developing ALS is still unknown, but toxic influence of glutamate, disorder of the immunological processes, activity of the neutrophic factors, and environmental factors damage the human health. The aim of this work is to show the characteristics of the specialist palliative medicine as a comprehensive approach to the illness and the patient with the assistance of a multidisciplinary team, optimal intervention and symptom control, good communication and emotional support, procedure of making ethical decisions, and evaluation of the needs and demands of the patient. The beginning of the palliative treatment is also introducing the patient with the diagnose, explaining that the disease can develop differently, that there is no cure for it, and letting the patient know that there are certain ways of helping him. An important issue is the deficit of hospital capacity, absence of specialized institutions for quality palliative care, while the existing private capacities are quite often unreachable to most of the families because of the high prices. The conclusion of the work is that the palliative care is the only way in which the patient will have a better life, even though there is a lot of effort put into raising public awareness about this disease and finding a cure for ALS.