Refusal of Tube Feeding as Seen from a Patient Advocacy Organization: A Comparison with Landmark Court Cases

Abstract

To determine how closely high court decisions regarding tube feeding are a reflection of the situations that occur in the general population. A retrospective review was conducted of memos recording inquiries made to the Society for the Right to Die (SRD), a patient advocacy organization. Characteristics of clients were compared to characteristics of individuals considered in landmark "right-to-die tube feeding cases during the same period of time. Information from 116 memos of inquiries made from 1985 through mid-1990 was compared to 20 court cases, and significant differences were identified. The average age of the SRD clients was 77.6 (+/- 18.4) years compared to 55.1 (+/- 22.8) years for the court cases (P less than 0.001). Of the clients, 79% were 70 years of age or older and 28% were 90 or older; in contrast, 7 (35%) of subjects in the court cases were 70 years of age or older, and none was over 90 (P less than 0.001). In addition, whereas 14 (70%) of the court cases dealt with individuals in a persistent vegetative state, only 17 (15%) of SRD clients carried that diagnosis (P less than 0.001), with the remainder suffering from dementia, various stages of coma, or a variety of other debilitating disorders. The sex distribution, year of inquiry or year of court decision, and geographic distribution were similar. Some states were overrepresented in both groups. High court cases may inadequately reflect the majority of situations that arise on a day-to-day basis. Elderly individuals, in particular those who are not in a persistent vegetative state, are significantly underrepresented.