Do patients who underestimate their health decline rely more on doctors? Insights from patients in their last six months of life

Abstract

Objectives: In the last six months of life, many patients prefer to rely on healthcare providers to make medical decisions. Understanding the factors that shape this preference is essential for enhancing communication and tailoring care to patients' needs. This study examines the association between patients' preference to delegate decisions to doctors and their expectations of health deterioration during the last phase of life.

Methods: Data were collected via patient-reported questionnaires from patients in the last phase of life (clinician-identified based on established end-of-life criteria) enrolled in the iLIVE project in 11 countries (2020-2023) at baseline (n = 1055) and 1-month follow-up (n = 509). Probit regression models estimated the partial associations between preference for doctors to decide and expectation of health deterioration, controlling for covariates such as age, gender, living situation, education level, main diagnosis, self-rated health, and country.

Results: On average, 45 % of patients expressed a preference for doctors to make all medical decisions at both baseline and follow-up. At baseline, 64.6 % expected their health to worsen (61.9 % at follow-up). Patients who did not expect their health to worsen were more likely to prefer doctors to make decisions at both baseline (Average Marginal Effect (AME) = 0.11, p < 0.001) and follow-up (AME = 0.15, p < 0.001).

Conclusions: Patients who do not expect their health to deteriorate, despite being in the last phase of life, are more likely to prefer that doctors make decisions on their behalf.

Practice implications: These findings highlight the need for tailored communication strategies and patient education efforts that support realistic understanding of prognosis and promote shared decision-making at the end of life.

Keywords: Decision making; End-of-life; Health deterioration; Palliative care.