[Palliative care at the end of life for intractable neurological diseases]

Palliative care at the end of life for intractable neurological diseases has come into discussion recently. According to the care guidelines for amyotrophic lateral sclerosis (ALS), suggested by the Japan Neurology Societies, neurological doctors should primarily aim at reducing patients' pain, share decisions with patients, and care for breathing difficulties, pain, and anxieties positively with the use of narcotics, like the care for cancer patients. Between June 2003 and June 2006, 58 of 79 patients (73%) refused a treatment to prolong their life, such as tracheal positive pressure ventilation (TPPV), and 19 of 24 (79%) patients desired to remain at home; these patients represented the majority. I will introduce the examples of ALS patients who refused TPPV, those who had intubation and ventilator attachment unwillingly at the time of emergency medical admission, and those who refused tube feedings. I will also report the practice on a patient with multi-system atrophy who was not self-decisive, the procedure of easing pain and its efficacy on the 9 ALS examples of home death, and the problems seen from 10 examples of death at a hospital. Hereafter, it is necessary to discuss intensely the problems of end-of-life palliative care especially for intractable neurological diseases in order to establish a methodology and to popularize it.