Appraising publicly available online resources to support patients considering decisions about medical assistance in dying in Canada: an environmental scan.

CMAJ open Pub Date : 2023-10-03 Print Date: 2023-09-01 DOI:10.9778/cmajo.20220224
Alda Kiss, Krystina B Lewis, France Légaré, Lissa Pacheco-Brousseau, Qian Zhang, Laura Wilding, Lindsey Sikora, Dawn Stacey
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Abstract

Background: Medical assistance in dying (MAiD) was legalized in Canada in 2016, with legislation updated in 2021. It is unclear whether resources are available to help patients make this difficult decision; therefore, we sought to identify and quality appraise Canadian MAiD resources for supporting patients making this decision.

Methods: We conducted an environmental scan by searching Canadian websites for online MAiD resources that were published after the 2016 MAiD legislation, patient targeted, publicly accessible and able to inform decisions about MAiD in Canada. We excluded resources that targeted health care professionals or policy-makers, service protocols and personal narratives. Two authors appraised resources using the International Patient Decision Aids Standards (IPDAS) criteria and the Patient Education Materials Assessment Tool (PEMAT) for health literacy. Descriptive analysis was conducted. We defined resources as patient decision aids if 7 IPDAS defining criteria were met, and we rated resources as adequate for understandability or actionability if the PEMAT score was 70% or greater.

Results: We identified 80 MAiD resources. As of March 2023, 62 resources (90%) provided eligibility according to the 2021 legislation and 11 did not discuss any eligibility criteria. The median IPDAS score was 3 out of 7; 52% discussed alternative options and none provided benefits or harms. Of 80 resources, 59% were adequate for understandability and 29% were adequate for actionability.

Interpretation: Although many resources on MAiD were updated with 2021 legislation, few were adequate to support patients with lower health literacy. There is a need to determine whether a patient decision aid would be appropriate for people in Canada considering MAiD.

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评估可公开获得的在线资源,以支持在加拿大考虑死亡医疗援助的患者:环境扫描。
背景:加拿大于2016年将死亡医疗救助合法化,并于2021年更新了立法。目前尚不清楚是否有资源可以帮助患者做出这一艰难的决定;因此,我们试图确定和质量评估加拿大MAiD资源,以支持患者做出这一决定。方法:我们通过在加拿大网站上搜索2016年MAiD立法后发布的在线MAiD资源进行了环境扫描,这些资源以患者为目标,可公开访问,并能够为加拿大的MAiD决策提供信息。我们排除了针对医疗保健专业人员或决策者、服务协议和个人叙述的资源。两位作者使用国际患者决策艾滋病标准(IPDAS)标准和患者教育材料评估工具(PEMAT)评估了健康素养方面的资源。进行描述性分析。如果符合7项IPDAS定义标准,我们将资源定义为患者决策辅助工具;如果PEMAT得分为70%或更高,我们将其评为足够的可理解性或可操作性。结果:我们确定了80个MAiD资源。截至2023年3月,62个资源(90%)根据2021年立法提供了资格,11个资源没有讨论任何资格标准。IPDAS评分中位数为3/7;52%的人讨论了替代方案,没有一个提供好处或坏处。在80种资源中,59%的资源足以理解,29%的资源足以行动。解读:尽管MAiD上的许多资源都随着2021年的立法进行了更新,但很少有资源足以支持健康素养较低的患者。有必要确定患者决策援助是否适合加拿大考虑MAiD的人。
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CiteScore
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