Table 2 Participant concerns about encouraging participation in ACP
Theme | Supporting comments |
|---|---|
Process concerns | |
• Difficulty maintaining up-to-date information | “if you have complex health problem- you don’t know how your experience, health can change” |
“emergency contact person is no longer current” | |
• Documents/agents inaccessible | “emergency contacts not available at time of need” |
“no one brings Green Sleeve in” | |
• Patient signature not required on GCD order | “GCD not signed by patient- would want to sign GCD” |
• Complicated documentation | “too many forms to fill out - not friendly” |
“going through Green Sleeve is complicated” | |
• Authority concerns – doctors vs. agents | “want a GOC but don’t want my PD agent to lose decision making authority to a doctor of GOC document” |
• Lack of support/facilitation | “need hand holding, guidance to fill in documents” |
“need help from clinician- these are the things you have to think of” | |
• Family/agent conflicts | “disagreement of family members – tension” |
• Role confusion | “Where do we go to have these conversations?” |
“Specialists e.g. cancer care are not the medical persons to be expected to have conversations” | |
• Capacity issues | “If adult child with mental illness goes in and out of “capacity” how does personal directive change?” |
Lack of public understanding of ACP | |
• Lack of knowledge/ resources | “not enough knowledge and tools – wider availability” |
“lack of knowledge of Green Sleeve” | |
• Terminology is complex and/or always changing | “Language change- DNR to GCD” |
“need for plain language” | |
• Health literacy | “Health literacy needs to be addressed! How is a personal directive different from a power of attorney?” |
Legal concerns | |
• Document legality | “Confusion between GOC/PD – which overrules?” |
• Jurisdiction | “Laws may be different in other countries/provinces when health failure happens - how to bring/uphold person’s ACP done in Alberta?” |
• Legal costs | “People think they need to have a lawyer to get a personal directive – legal fees” |
Emotional concerns | |
• Uncomfortable topic | “dying - nobody wants to talk about this” |
• Don’t want to destroy hope | “caregivers don’t want to broach the topic with newly diagnosed family member” |
Lack of need | “people don’t think they need it” |
“not going to happen to us” | |
Lack of access | “Opportunity to discuss not available for everyone” |
“reaching isolated older adults” | |
Healthcare providers’ time constraints | “Doctors [have] no time to discuss with people. How does this happen within a 1/2 h allotment during a doctor visit?” |