Medical decision-making of the patient in the context of the family: results of a survey

Abstract

GOALS OF THE STUDY: From the perspective of patient autonomy, the family is often looked upon as a troublemaker in medical decision-making. The question remains open as to whether it is possible to do justice to the autonomy of the individual patient and to the claims of his family at the same time. PATIENTS AND METHODS: A clinical study was undertaken when both patients and dependents were interviewed. One hundred people (50 pairs) participated in this study and could be analyzed. A questionnaire consisting of 15 items was used and was evaluated to see if and how the attitudes concerning medical decision-making differ between patient and dependent. RESULTS: The majority of the interviewees (89%) agreed with the opinion that medical decisions should be made jointly by the patient, the family, and the doctor. Ninety-three percent approved of the claim to inform not only the patient, but also the family. Seventy percent of the patients and 54% of the dependents think that the family is entitled to have a say in matters concerning medical decision-making, only 30% of the patients, but 42% of the dependents argued against this view. Eighty-four percent of the patients argued against a change in this right at the end of life, which was approved by 32% of the family members. CONCLUSIONS: The family plays a central role in medical decision-making. This could be shown by a survey among patients with malignant diseases and their dependents. These initial findings must be verified in a larger population. The increased inclusion of the family in the process of medical decision-making corresponds in general to the expressed will of the patients. The model of shared decision-making is favored by values which both the family and the patient have in common. Thus, a family-based decision-making theory needs to be formulated in the future.