[The role of next of kin in medical decision-making--empirical findings from haemato-oncological diseases]. / Die Rolle der Angehörigen bei medizinischen Entscheidungen--Empirische Befunde zu hämatoonkologischen Erkrankungen.

ABSTRACT

AIM OF THE STUDY Models of shared decision making in the patient-doctor relationship are attracting increasing attention. A recent study focuses on the so far inadequate attention paid to the role of next of kin. It was examined in which decision areas next of kin of haematological cancer patients were included, further what support next of kin could provided and finally which factors encouraged the participation of next of kin in that process. METHODS: From 2006-2008 empirical data were collected from hemato-oncological patients undergoing treatment as well as from their families. The participating family members of patients were mailed questionnaires based on the patient sample (designation of a family member by the patient 118/177 or 66.7%) on average half of a year following the patient's (in- or outpatient) treatment. The response rate of the participants was 67.8% (80/118). Of the respondents, 65% were spouses or partners of the patients, the average age was 53.9 years, and 66.3% were female. RESULTS: Family members think it makes sense for them to take an active part in medical decisions affecting their loved ones and a majority of them reported having participated in decision-making processes concerning a variety of issues. Being involved in their loved one's discussions with their doctors has a significant influence on this. Family members' level of education was the only clear predictor for participation in discussions with doctors that could be isolated. CONCLUSION: It is clear that family members, especially spouses and partners, consider it meaningful to participate in medical decisions affecting their loved ones, and that they want to be able to do this in the clinical context. One limitation that must be mentioned is that due to the small size of the sample and an approach that focused on initial exploration, the results should be interpreted as a point of orientation. Further studies should look in more detail at how inner family structures play a role in patient-doctor shared decision-making, as well as the concrete conditions and implications that play a role in family members' participation in this process, i.e., adherence to "doctor's orders" and possible decision-making conflicts on the part of the patient.