Patient participation in medical decisions at the end of life: a study protocol

Koen Pardon, Reginald Deschepper, Bob Vanderstichele, Eva Michiels, Jean Bernheim, Freddy Mortier, Raymond Mathys, Luc Deliens

    Research output: Contribution to journalEditorial

    Abstract

    Background
    Health care provision and decision making become more and more patient centered. This is reflected in deontological, legal and societal changes. The physician is no longer seen as the person who knows best, but as the person who informs and supports the patient. Hence, models of "shared decision making" are preferred above the paternalistic model. However, it can be questioned whether all patients want to be informed and participate in medical decision making. This study longitudinally examines: 1. the preferred versus actual information and participation level of terminally ill patients and
    2. the effect on the outcome-measures quality of life (i) and satisfaction with the decision-making process (ii). The presentation will outline the study design.

    Methods/design
    During a one year period, pneumology physicians in 3 university hospitals and 12 general hospitals in Belgium ask consecutive patients with an initial diagnosis of non-small cell lung cancer stage IIIb or IV to participate in the study. Subsequently, patients who give their informed consent are interviewed every two months by trained interviewers until the patient dies or until one year after inclusion. The questionnaire consists of self-developed instruments on the basis of literature (information and participation) and internationally validated instruments: QLQ-C15-PAL (i), ACSA (i), and COMRADE (ii). The interviews are audio taped enabling follow-up of the interviewers. The study also has a prospective part: when the patient dies, the hospital physician and general practitioner fill in a questionnaire on implemented end-of-life-decisions and quality of death. Data collection started in February 2007 and will continue until January 2009.

    Discussion
    Longitudinal designs are scarce in end-of-life research. On June 15th 2007, 51 patients of an intended 100-150 were included in the study. Major challenges in this study are the motivation of caregivers, the recruitment of patients and the ethical aspects of involving vulnerable patients.
    Original languageEnglish
    JournalArchives of Public Health
    Volume65
    Publication statusPublished - 14 Dec 2007

    Keywords

    • Carcinoma
    • Non-Small-Cell Lung
    • Patient participation
    • Patient-centered communication
    • Palliative care
    • End-of-life decisions

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