Making decisions about tube feeding for severely demented patients at the end of life: clinical, legal, and ethical considerations

Abstract

Caregivers and family members are forced to deal with questions about tube feeding at the end of life for hundreds of thousands of patients suffering from severe dementia every year. But decisions about accepting or forgoing artificial nutrition and hydration (ANH) tend to be made in haste, late in the game, without benefit of full information. Oftentimes, this leads to increased patient suffering and the inefficient use of medical resources. Surviving family members and caregivers may experience a haunting sense of guilt, wondering if they made the right decision at the right time. The professional literature suggests that forgoing ANH is an entirely appropriate alternative at the end of life. The vast majority of Americans say they do not want to be tube fed if mortally ill and are no longer able to eat on their own. Nonetheless, the provision of aggressive nutrition and hydration support for the severely demented population at the end of life is the norm in America. If there were more awareness of (a) the burdens typically associated with ANH; (b) the pathogenesis of terminal dehydration, and; (c) the medical, legal, and ethical acceptability of terminal dehydration, then forgoing of ANH might become more commonly considered.