Home care of an ALS patient using an artificial respirator

Due to social changes, advancement of medical technology and introduction of home care insurance, it has become a reality that a patient using an artificial respirator could be treated at home. We report specific problems associated with an ALS patient using an artificial respirator through home care support. A 68-year-old male had a back problem in 2001 and developed a sudden difficulty in breathing. Since 2002, the patient was forced to use an artificial respirator, and without taking his informed consent, was treated at home. Primary caregivers are his wife and daughter. The specific problems we identified are (1) patient's caregivers were unnecessary confused due to a lack of coordination between visiting nurses from two hospitals in giving home care treatment direction, (2) the care giver's burden tends to increase as the duration of care is extended because the short-stay facility or transferring system for patient is not well equipped, (3) there is no particular place to ask for assistance in case of an emergency or an established communication method as the patient's disease status will progress. It appears that these identified problems cannot be resolved by one hospital. However, we believe that we have to establish a community-wide home care system as quickly as possible. Meanwhile, it is important to have a nationwide coordination involving government, corporations, and political institutions to make it to be a success.