Patients’ participation in decision making at the end-of-life. A longitudinal study of preferred versus actual level of information and participation and the effect on quality of life, satisfaction with decision making and quality of care.

More and more palliative care becomes patient focused and family centered. Recent changes in the deontology of physicians, legal changes and changes in the public opinion in Belgium show that the physician is no longer seen as the person who knows what is best for his/her patient, but as the person who informs and supports the patient. Also in scientific literature the focus is on models of Shared decision-making and Informed decision as alternatives for the paternalistic model. With this the question raises if all patients want to be informed and to participate. It is suggested that the degree of information and participation should be adapted to the individual. In this prospective longitudinal study we want to examine preferred versus actual level of information and participation of terminally ill patients in decision-making and the effect of this on QoL, quality of care and satisfaction with the decision-making process.