Does the public feel prepared to be substitute decision-makers? Gaps in preparedness and support for a high school curriculum: a national survey

Abstract

Background Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM. Methods We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis. Results Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it. Interpretation There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.

Randomised trial of a serious illness decision aid (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning

“…12 There is misunderstanding among the public of the benefits and harms of treatments during serious illness such as cardiopulmonary resuscitation 13 and palliative care 14 and a lack of understanding of the SDM role. 15 These common misunderstandings that undermine successful ACP likely contribute to the decisional conflict and regret experienced by some SDM. 16 The novel decision aid, (the Plan Well Guide tool; www.…”

Palliative Approach to Care Education for Multidisciplinary Staff of Long-Term Care Homes: A Pretest Post-Test Study

“…The educational workshop intervention in this study illustrated statistically significant improvements in LTC staff’s knowledge and comfort in implementing a palliative approach to care and their perceptions toward ACP conversations. Currently, in Canada, the LTC system is not structured effectively to have these ACP conversations early in the disease trajectory ( Siu et al, 2020 ; Wong et al, 2021 ). Earlier ACP can potentially mitigate future family conflicts or poor care decisions ( Andreasen et al, 2019 ).…”

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

“…However, few participants reported accessing support to help them make these decisions, which highlights a potential need to develop resources addressing the types of challenges SDMs are likely to encounter and for this content to be delivered in ways that are preferable for potential SDMs. Findings from a recent survey among the Canadian general population showed that most participants would support the introduction of a curriculum for senior high school students to learn about being an SDM, 31 further highlighting the need to develop and evaluate interventions that address the problem of a lack of preparedness to be an SDM in the general public. 44 In our study, a majority of participants preferred to obtain information from a health professional.…”

“…In addition, a recent national survey of Canadians examining preparedness to act as an SDM showed that while 25% of the sample had previous experience as an SDM and 71% believed they would have to act as an SDM in the future, 62% believed they understood the SDM role and only 53% felt prepared to be an SDM. 31 The authors are not aware of additional similar studies exploring the general public's knowledge and preparedness for the SDM role. However, observational studies from the USA suggest being an SDM is associated with elevated levels of anxiety and depression in some people 32 and that a person's confidence to be an SDM varies substantially, with people who have previous SDM experience or greater communication with the patient's doctor demonstrating increased confidence levels compared with those who do not.…”