Background Family plays a major role in medical decision-making in China. Little is known about whether family caregivers understand patients’ preference for receiving life-sustaining treatments and are able to make decisions consistent with these when patients are incapable of making medical decisions. We aimed to compare preferences and attitudes concerning life-sustaining treatments of community-dwelling patients with chronic conditions and their family caregivers.
Methods We conducted a cross-sectional study among 150 dyads of community-dwelling patients with chronic conditions and their family caregivers from four communities in Zhengzhou. We measured preferences for five life-sustaining treatments (cardiopulmonary resuscitation, mechanical ventilation, tube feeding, hemodialysis, chemotherapy), who should decide whether to apply treatments, the timing of making decisions, and their most important consideration behind the preference.
Results For each life-sustaining treatment, family caregivers more frequently preferred the patient to receive such treatment in case the patient would be incapable of making medical decisions than the patients themselves. There was slight to fair agreement between patients‘ and family caregivers’ preferences for life-sustaining treatments; kappa values ranged from 0.071 for mechanical ventilation to 0.241 for chemotherapy. 29% of patients and 44% of family caregivers preferred the patient to make their own decisions about life-sustaining treatments. The most important considerations for patients and their family caregivers when deciding on life-sustaining treatments are family burden and the patient’s comfort and state of consciousness.
Conclusions Family caregivers preferred life-sustaining treatments for the patient more frequently than the patients themselves. Although some patients and family caregivers believed that the family should be the decision-maker in patients’ decision-making process, a meaningful number of patients and family caregivers preferred that patients make their own medical decisions.
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