Table 1.
BARRIERS IDENTIFIED BY CLOSED-ENDED QUESTIONS “yes/no” | BARRIERS IDENTIFIED BY THE OPEN-ENDED QUESTION “Are there any other reasons?” |
---|---|
Contemplation | |
You think that you are too healthy | I have not given it much thought |
You are too busy† | I don’t want to think about death, |
You don’t have enough information about your health or healthcare choices | I’d rather leave the choice to others |
Thinking about it makes you nervous, sad or depressed | My wishes are already known |
You prefer to leave your health in God’s hands | I need help understanding the forms |
Discussion with family and friends | |
You don’t have any family or friends† | I am too busy |
You think that you are too healthy | My family and friends already know my wishes |
You don’t have enough information about your health or choices for care | I prefer to leave my health to fate |
It makes you nervous, sad, or depressed | |
You don’t want to worry your family or friends† | |
You don’t feel comfortable bringing it up† | |
Your family or friends don’t want to talk about it with you† | |
You don’t trust your family or friends† | |
This is your choice and you don’t want family or friends involved† | |
You feel bad things will happen to your health if you do talk about it | |
You prefer to leave your health in God’s hands | |
Discussion with doctor | |
You think that you are too healthy | I am too busy |
You don’t have enough information about your health or choices for care | I have not given it much thought |
It makes you nervous, sad, or depressed | I need help understanding the forms |
You don’t trust your doctor† | I don’t want to think about death, I’d rather leave the |
You don’t feel comfortable bringing it up to your doctor† | choice to others |
You haven’t seen your doctor† | My doctor already knows my wishes |
Your doctor is too busy† | |
You have too many medical problems to talk to your doctor about† | |
Your doctor does not want to talk about it with you† | |
You feel bad things will happen to your health if you do talk about it | |
You prefer to leave your health in God’s hands | |
Documentation | |
You think you are too healthy | I need help understanding the forms |
You don’t have enough information about your health or choices for care | I have not given it much thought |
Filling it out would make you nervous, sad, or depressed | I lost the form |
You don’t like to fill out forms that have to do with your medical care† | I am busy |
The forms are too hard to fill out† | I don’t want to think about death, I’d rather leave the |
You don’t know what an advance directive form is for† | choice to others |
You feel that bad things will happen to your health if you fill out the form | My wishes are already known |
You prefer to leave your health in God’s hands | I have poor relationships with family, friends |
We inquired about barriers to four ACP steps; contemplation, discussions with family and friends, discussions with physicians, and documentation.
When assessing barriers to specific steps, such as barriers to discussions with family/friends, discussions with clinicians, and documentation, some of the close-ended barriers only pertained to those individual steps. The barriers only asked at specific steps are labeled with a † symbol. Based on prior literature, some of the closed-ended barriers were thought to be relevant and potentially universal to all four ACP steps (e.g., thinking “You are too healthy” for ACP), and, therefore, were asked about at every ACP step. 4, 17, 18 The barriers asked at every ACP step are not labeled.