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

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 center dot 2%), 60 years or older (64 center dot 0%), married (82 center dot 2%), lived with family (98 center dot 2%), had medical insurance (94 center dot 8%), earned below-average income (53 center dot 5%), lived rurally (61 center dot 5%), had a gastrointestinal cancer diagnosis (50 center dot 8%), experienced moderate or severe pain (86 center dot 3%), never received palliative care (80 center dot 4%) and had caregivers as primary decision-makers (70 center dot 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 center dot 86, 95% CI:1 center dot 26-2 center dot 74), spouse (AOR = 2 center dot 04, 95% CI:1 center dot 26-3 center dot 30), or other caregivers (AOR = 3 center dot 46, 95% CI:1 center dot 24-9 center dot 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.