Table 3.
Barriers, Grouped by Theme, to the Advance Care Planning (ACP) Steps of Contemplation, Discussions, and Documentation*
| Barrier Theme | Individual Participant-Identified Barriers | Overallc† | Not Contemplated ACP Wishes |
Not Discussed ACP with Family |
Not Discussed ACP with Doctor |
Not Documented ACP Wishes |
|---|---|---|---|---|---|---|
| n=143 % |
n=59 % |
n=67 % |
n=98 % |
n=131 % |
||
| ACP Perceived to be | I am too healthy c‡ | 41 | 33 | 36 | 32 | |
| Irrelevant | I prefer to leave my health in God’s hands C | 43 | 35 | 28 | 29 | |
| I have not given it much thought O | 21 | - | 21 | 35 | ||
| I prefer to leave my health to fate O | - | 15 | - | - | ||
| My doctor, family and friends already know my decisions O | 5 | 1 | 2 | 3 | ||
| Any perceived as irrelevant barriers | 84 | 75 | 64 | 67 | 77 | |
| Personal Barriers | It makes me nervous or sad C | 28 | 19 | 19 | 13 | |
| I don’t want to think about death, I’d rather leave the choice to others O | 16 | - | 4 | - | ||
| I am too busy with work and family O | 40 | 7 | 4 | 18 | ||
| Any personal barriers | 53 | 59 | 27 | 27 | 28 | |
| Relationship Concerns | I have a poor relationship with my family, friends C | - | 36 | - | 2 | |
| I have poor a relationship with my doctor C | - | - | 29 | |||
| I don’t want my family involved C | - | 25 | - | - | ||
| I don’t have family or friends C | - | 22 | - | - | ||
| I don’t want to worry or burden my family, friends C | - | 43 | - | - | ||
| Any relationship barriers | 46 | - | 76 | 30 | 2 | |
| Information Needs | I need more information about my health and/or health care choices C | 29 | 18 | 26 | 22 | |
| I don’t know what an advance directive is C | - | - | - | 15 | ||
| Any informational barriers | 36 | 29 | 18 | 26 | 31 | |
| Health Encounter | I have too many other medical problems C | - | - | 30 | - | |
| Time Constraints | ||||||
| My doctor is too busy C | - | - | 18 | - | ||
| Any time constraint barrier | 29 | - | - | 39 | - | |
| Problems with | I need help understanding the forms O | 5 | - | 5 | 28 | |
| Advance Directive | I do not like to fill out forms in general O | - | - | - | 2 | |
| Form | The advance directive form was not helpful O | - | - | - | 2 | |
| Any problems with advance directives | 29 | 5 | - | 5 | 30 | |
The barrier domains are presented in descending order of prevalence across all of the ACP steps. The total n for each step differs as varying numbers of participants reported not completing individual ACP steps. Participants could endorse multiple barriers for each ACP step.
The Overall column represents all participants (n=143). For each barrier theme, the proportion of participants who endorsed any of the individual barriers at any of the four ACP steps is presented.
“C” represents closed-ended responses participants could choose from a pre-defined list, and “O” represents responses to the open-ended question, “Are there any other reasons?”