Sellars Marcus, Tran Julien, Nolte Linda, White Ben, Sinclair Craig, Fetherstonhaugh Deirdre, Detering Karen
Department of Health Services Research & Policy, The Australian National University, Canberra, Australian Capital Territory, Australia
Advance Care Planning Australia, Austin Health, Melbourne, Victoria, Australia.
BMJ Support Palliat Care. 2021 Mar 15. doi: 10.1136/bmjspcare-2020-002619.
To describe the Australian adult public's knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role.
This is a national cross-sectional online survey of the Australian adult public. The survey examined participants' advance care planning (ACP) awareness and experience, SDM experiences and preferences for obtaining more information about SDM, and participant knowledge about SDM.
Of 1586 people who opened the survey, 1120 (70.6%) were included in the final sample. 13% (n=142) of participants indicated they had acted as an SDM. A median score of two correct responses out of five showed low to moderate knowledge about the SDM role among all participants, with only 33% reporting awareness of SDM laws existing in Australia. While most (59%) participants ranked a health professional as their preferred source of obtaining information about supporting SDMs, few participants who had been an SDM (n=64, 45%) reported obtaining any support in making medical decisions. The median SDM knowledge scores for people who had discussed ACP (3.0 vs 2.0, U=1 45 222, z=6.910, p<0.001), documented their ACP preferences (3.0 vs 2.0, U=71 984, z=4.087, p<0.001) or acted in the SDM role (3.0 vs 2.0, U=56 353, z=-3.694, p<0.001) were significantly higher compared with those who had not.
The Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.
描述澳大利亚成年公众对于医疗决策替代决策制定的知识和经历，以及他们获取关于替代决策者（SDM）角色信息的偏好。
这是一项针对澳大利亚成年公众的全国性横断面在线调查。该调查考察了参与者的预先护理计划（ACP）意识和经历、SDM经历以及获取更多关于SDM信息的偏好，还有参与者对SDM的了解。
在1586名打开调查问卷的人中，1120人（70.6%）被纳入最终样本。13%（n = 142）的参与者表示他们曾担任过SDM。在所有参与者中，五道题答对两道的中位数得分表明对SDM角色的了解程度为低到中等，只有33%的人报告知晓澳大利亚存在的SDM法律。虽然大多数（59%）参与者将医疗专业人员列为获取关于支持SDM信息的首选来源，但很少有曾担任过SDM的参与者（n = 64，45%）报告在做出医疗决策时得到过任何支持。与未讨论过ACP的人相比，讨论过ACP的人（3.0对2.0，U = 145222，z = 6.910，p < 0.001）、记录了他们的ACP偏好的人（3.0对2.0，U = 71984，z = 4.087，p < 0.001）或担任过SDM角色的人（3.0对2.0，U = 56353，z = -3.694，p < 0.001）的SDM知识中位数得分显著更高。
澳大利亚公众对SDM角色的了解可能为低到中等，并且在做出具有挑战性的医疗决策时仅能获得极少的支持。
