Department of Nursing and Health, Zhengzhou University, Zhengzhou, People's Republic of China.
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.
Clin Interv Aging. 2023 Mar 23;18:467-475. doi: 10.2147/CIA.S395128. eCollection 2023.
The 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 them 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.
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 life-sustaining treatments (cardiopulmonary resuscitation, mechanical ventilation, tube feeding, hemodialysis, chemotherapy), who should decide, the timing of making decisions, and their most important consideration.
The consistency of preferences for life-sustaining treatments between patients and family caregivers was poor to fair, with kappa values ranging from 0.071 for mechanical ventilation to 0.241 for chemotherapy. Family caregivers more frequently preferred each life-sustaining treatment for the patients than the patients themselves. More family caregivers than patients preferred the patient to make their own decisions about life-sustaining treatments (29% of patients and 44% of family caregivers). The most important considerations when deciding on life-sustaining treatments are family burden and the patient's comfort and state of consciousness.
There is a poor to fair consistency between community-dwelling older patients and their family caregivers in their preferences and attitudes towards life-sustaining treatments. A minority of patients and family caregivers preferred that patients make their own medical decisions. We recommend healthcare professionals to encourage discussions between patients and their families on future care to improve the mutual understanding within the family about medical decision-making.
家庭在中国的医疗决策中起着重要作用。对于家庭照顾者是否了解患者对接受维持生命治疗的偏好，以及当患者无法做出医疗决策时，他们是否能够做出与患者偏好一致的决策，知之甚少。我们旨在比较社区居住的慢性病患者及其家庭照顾者对维持生命治疗的偏好和态度。
我们在郑州的四个社区对 150 对社区居住的慢性病患者及其家庭照顾者进行了横断面研究。我们测量了对维持生命治疗的偏好（心肺复苏、机械通气、管饲、血液透析、化疗）、应由谁做出决定、做出决定的时机以及他们最重要的考虑因素。
患者和家庭照顾者对维持生命治疗的偏好一致性较差至一般，kappa 值范围为 0.071（机械通气）至 0.241（化疗）。家庭照顾者比患者更频繁地为患者选择维持生命的治疗方法。与患者相比，更多的家庭照顾者希望患者对维持生命的治疗做出自己的决定（29%的患者和 44%的家庭照顾者）。决定维持生命治疗时最重要的考虑因素是家庭负担和患者的舒适度和意识状态。
社区居住的老年患者及其家庭照顾者在对维持生命治疗的偏好和态度方面存在较差至一般的一致性。少数患者和家庭照顾者希望患者自己做出医疗决策。我们建议医疗保健专业人员鼓励患者及其家属就未来护理进行讨论，以提高家庭内部对医疗决策的相互理解。
