Schizophrenia patients and their named alternative decision makers expressed similar views on how to make decisions about the patients’ treatment and participation in research, a pilot study shows.
Twenty individuals with schizophrenia who were living in a community setting participated in a written survey inquiring about their decisions regarding their participation in treatment and research, and their underlying values. Each schizophrenia patient identified one individual as a preferred alternative decision maker, and those individuals participated in a “parallel survey.” The patients’ perceived importance of items pertaining to burden, happiness, and safety when making decisions about treatment and research were among the areas addressed in the surveys’ questions.
“Personal views of ill individuals were compared to predictions made by preferred alternative decision makers regarding ill individuals’ perspectives (“attunement”) for aspects related to treatment and research decisions,” the study says. To assess alignment between the members of each patient-alternative decision-maker pair, the researchers asked each study participant about the closeness of the relationship and frequency of contact between that individual and the other member of his or her pair. Each participant in the study also was asked to rate the importance of several ethical principles.
When making decisions pertaining to treatment, most of the individuals with schizophrenia and their respective alternative decision makers stated that the following issues were important to consider: the burden of treatment placed on the ill individual, the safety of the ill individual, the happiness of the ill individual, the safety of the family, and the happiness of the family. The two categories of study participants also reached attunement on all six aspects of research decision making covered in the surveys. An additional study finding was that both members of patient-alternative decision-maker pairs were aligned in their views of ethically salient aspects of daily life.
“The strong overall pattern of attunement and alignment revealed in this study should, we suggest, inspire confidence in the ethical safeguard of alternative decision makers, particularly in very close relationships between ill individuals and their preferred alternative decision maker,” said Dr. Laura Weiss Roberts andJane Paik Kim, Ph.D., both of the department of psychiatry and behavioral sciences at Stanford (Calif.) University.
The study’s findings “must be considered preliminary, and warrant additional and more systematic inquiry,” according to the researchers.
Read the full study in Journal of Psychiatric Research (doi: 10.1016/j.jpsychires.2015.09.014).