. 2019 Jun 3;19:679. doi: 10.1186/s12889-019-7034-4

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”
• Difficulty maintaining up-to-date information	“emergency contact person is no longer current”
• Documents/agents inaccessible	“emergency contacts not available at time of need”
• Documents/agents inaccessible	“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”
• Complicated documentation	“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”
• Lack of support/facilitation	“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?”
• Role confusion	“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/ resources	“lack of knowledge of Green Sleeve”
• Terminology is complex and/or always changing	“Language change- DNR to GCD”
• Terminology is complex and/or always changing	“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”
Lack of need	“not going to happen to us”
Lack of access	“Opportunity to discuss not available for everyone”
Lack of access	“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?”

DNR do not resuscitate, GCD goals of care designation(s), GOC goals of care, PD personal directive