Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China

Abstract

Purpose: In China, decisions regarding the treatment of seriously ill patients are usually made by family caregivers. This study aimed to explore the association between the primary decision-makers and the intensity of care given to patients with advanced cancer in China. Methods: We conducted a survey of family members and other caregivers representing 828 cancer patients who died between July 2013 and July 2016. The survey asked: “After the physician conveyed that the disease is incurable, what treatment did the patient and caregiver prefer?” and “Who was the primary decision-maker?” We compared the treatment intensity with locus of decision-making using multivariable logistic regression, adjusting for socio-demographic and clinical covariates informed. Results: Of the 792 patients in our sample, the majority were male (67·2%), 60 years or older (64·0%), married (82·2%), lived with family (98·2%), had medical insurance (94·8%), earned below-average income (53·5%), lived rurally (61·5%), had a gastrointestinal cancer diagnosis (50·8%), experienced moderate or severe pain (86·3%), never received palliative care (80·4%) and had caregivers as primary decision-makers (70·6%). We found that patients were more likely to receive intensive disease-modifying treatments when the primary decision-maker were their children (adjusted odds ratio [AOR] = 1·86, 95% CI:1·26-2·74), spouse (AOR = 2·04, 95% CI:1·26-3·30), or other caregivers (AOR = 3·46, 95% CI:1·24-9·69). Conclusions: When patients with advanced cancer in China did not make their own medical decisions, they were more likely to receive intensive disease-modifying treatments at the end-of-life. Actions should be taken to better understand and ensure that caregivers’ decisions reflect the values and presence of patients.