2023 Volume 40 Issue 4 Pages 571-574
This article outlines the approach to patients and caregivers regarding diagnosis, prognosis, medical treatment, decision making, and response to emergencies.
In the past, there was a tendency not to explain ALS until it was clearly confirmed, but now it is recommended that ALS patients' future life plans be taken into consideration, and if ALS patients are deemed to have a high probability of ALS, medical personnel should explain how they perceive the disease, even before the diagnosis is confirmed. Regarding medical procedures that are in line with progression, such as gastrostomy, introduction of NIV, and psychological care, it is important that the patient and family fully understand the need for such procedures. The introduction of tracheostomy invasive ventilation (TIV) can make all the difference in the patient's prognosis. We should take the time to simulate the communication methods, nursing care, and financial aspects of TIV before decision making. It is also important to ease their mental burden by informing them that they are free to change their mind. In decision–making, including TIV, it is recommended that the patient, family, and caregivers share information with multidisciplinary professionals, and that collaborative decision making, which emphasizes the process of decision making, be encouraged. In addition, it is necessary to confirm the decision–making process in the event of a sudden emergency. Advance directives and medical information letters should be prepared in advance, considering the possibility of sudden emergency and unexpected situations.
