“SpezPat”- common advance directives versus disease-centred advance directives: a randomised controlled pilot study on the impact in physicians’ understanding of patients’ end-of- life decisions

Abstract

Background: The advance directive holds patients’ health care choices and fosters the patients’ autonomy. Nevertheless, understanding the patients’ wishes based on the information provided in advance directives, remains a challenge for health care providers. Based on the ethical premises of positive obligation to autonomy, an advanced directive that is disease-centred and features problems and complications of the disease the patient has, should help the health care providers to understand the patients’ wishes correctly. To test this hypothesis, a pilot-study was conducted to compare if physicians could make the correct end-of-life decision for their patients when patients used a disease-centred advance directive versus a common advance directive.Material and Methods: A randomised, controlled, prospective pilot study was designed, that included patients with NSCLC stage VI from the Department of Haematology and Medical Oncology, University Medical Centre, Goettingen. Patients were randomised into intervention and control groups. The control group received a common advance directive and the intervention group a disease-centred advance directive. Both groups filled out their advance directives and returned it. Subsequent, patients were asked to complete nine medical scenarios with different treatment decisions. For each scenario the patients had to decide whether they wanted to receive treatment on a 5-point-Likert scale. Four physicians were given the same scenarios and asked to decide on the treatment, according to the patients’ wishes as stated in the advance directive. The answers by patients and physicians were compared whether the physicians had made the correct assumptions.Results: Recruitment was stopped prematurely. 15 patients completed the study, 9 patients were randomised into the control group and 6 patients in the intervention group. A total of 135 decisions were evaluated. Concordance of physicians’ and patient’s answers, was 0.83 (95%-CI 0.71-0.91) in the intervention group, compared to 0.60 (95%-CI 0.48-0.70) in the control group and the difference between the two groups was statistically significant (p=0.005).Conclusions: This pilot study showed that disease-centred advance directives help physicians to understand their patients’ wishes more precisely and make treatment choices according to their wishes. Trial registration: The study is registered at the German Clinical Trial Register (no. DRKS00017580, registration date 27/08/2019)