Amyotrophic lateral sclerosis (ALS) is one of the most important disorders we should deal with under policy-based medical care. Since a diagnosis has been done as ALS, palliative medical care should be started. The palliative medical care has four stages according to the progression of the disorder; disclosure of the diagnosis, acceptance, long termed medical care, totall locked-in state, and family support after bereavement. When patients do not choose a respirator, the main issues are switched into dignity, and hospice care. On the other hand, if they choose the long termed medical treatment under respirator, they may face with a lot of problems to be solved including providing a safe place for medical care, deglutition, nutrition, communication, psychological problems like anxiety, depression, spiritual care and finding the meaning of life. As aging and declining body functions, physical complications may appear. To cope with these problems, medical teams of neurological wards in national hospital organization (NHO) and national center of neurology and psychiatry (NCNP) hospital should continue medical study on ALS. It is also necessary to build a local support system around the hospitals. In the shadow of medical and technical advancement, very important unsolved problems remain overlooked. In this special issue, we will discuss the way of improving QOL of ALS patients.

View full abstract

Amyotrophic lateral sclerosis (ALS) is an intractable neurological disease. Generally, its natural course without ventilator support is limited within several years. Although life can be prolonged by mechanical ventilation, it is not always easy to continue such a life both for patients and their family members, who are often primary care givers. In Japan, to improve QOL of the ALS patient, a great deal of effots have been made such as improving medical skill, promoting social support, and preparing suitable medical care systems As a consequence, the number of ALS patients living with a respirator increase overwhelmingly in comparison with other countries, The number of home care patients also increased. On the contraly there are still the patients who do not want life sustaining medical treatment especially mechanical ventilation. For those patients we should build up the palliative medicine, promote hospice care to assure the right of living and/or dying with dignity. And it also needs to make the social consensus that admit a patients' right to self-determination respecting their autonomous decision.

View full abstract

This is a report of semi-structured interviews with 18 patients on truth telling of ALS from the viewpoint of clinical psychology. Faced with the bad news, patients experienced various feelings and showed different reactions. Not everybody felt shocked. The bad news was often taken with disbelief, or accepted unperturbedly.
Unidentified state was sometimes more painful than the diagnosis of ALS, and all 18 patients had a vivid recollection of the situation at the time. These facts reconfirm the importance of the truth telling. Interviews also clarified the necessity of hope and psychological support in order that patients live the rest of their life with the disease.

View full abstract

[in Japanese]

View full abstract

[in Japanese]

View full abstract

[in Japanese]

View full abstract

[in Japanese]

View full abstract