Public knowledge, preferences and experiences about medical substitute decision-making: a national cross-sectional survey

Abstract

ObjectiveTo 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.MethodsThis 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.ResultsOf 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.ConclusionsThe Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.

Preferences trust interaction of nurses and parents as mediating variables between knowledge and shared decision making in the care of newborns in Hospitals

“…Studies on knowledge and preferences of Australian society also report that Australian adults have low knowledge about the role of substitute decisionmaker (SDM). The activity of discussing medical treatment preferences is also still low [17]. Another study in China reported that the quality of knowledge, has a positive effect on the adoption of health knowledge through trust [18].…”

Ethical frameworks of informed consent in the age of pediatric precision medicine

“…The clinical workflow of precision medicine starts with requesting informed consent from the pediatric patient or their substitute decision-makers when appropriate. Substitute decision-makers are individuals, such as parents, guardians, family members and individuals with power of attorney in pediatric medicine, with legal power to authorize healthcare-related decisions on another’s behalf if they cannot make the decisions for themselves, such as in the case of minors without knowledge and emotional understanding of the proposed intervention (Sellars et al, 2021 ). Decision-makers providing consent to precision medicine must assess the value of genetic screening while considering the current severity of the patient’s disease, the onset of future symptoms and the efficacy of follow-up treatment that follows from screening.…”

Operationalizing legal rights in end-of- life decision-making: A qualitative study

“…8,9 Empirical studies demonstrate that an understanding of rights, duties and responsibilities of substitute decision-makers and preparedness to act as such is limited. 10,11 Johnson 12 argues that in Australia, although advance care planning is promoted in policy, existing legal, organizational, cultural, and conceptual barriers limit its implementation. Further barriers include a lack of formal training and appropriate communication skills for practitioners, limited space and time to initiate and follow through advance care planning and discussions, limited or no reimbursement for time spent and poor information transfers across providers and settings.…”