Table 2 Barriers to Patient Engagement in ACP Post Hospital Discharge

Knowledge

Lack of understanding about the seriousness of one’s illness.

“All he told me at the time which I didn’t know at the time was the severity of this GOUT. I did not realize how bad it was, I did not realize that I could be gone right now”. – 20

“I was very upset on Thursday when I came back of course because I did not understand all the ramifications of a pacemaker and a defibrillator and I did not understand that my heart was so sick”. – 973

Widespread misunderstanding about what ACP is.

“I have done some arrangements made with the funeral parlors and this type of thing has been done since my husband passed away so I mean I have things kind of organized there and financial things with them and try and make it easier for them and I don’t know yet it’s hard to know if you only knew what was going to happen to you” – 617

“I am working on my funeral arrangements and I am also making a list of who gets what because I know after a death there can be arguments or not really arguments but people saying well I would like that so I would like to have as much as that settled and it makes it easier for those who are left behind. So I don’t want them to be bothered with funeral arrangements or deciding who gets what so that will be all. Now the advance care part, I haven’t really thought too much about it”. – 606

Skill

Physicians’ ability to effectively engage patients in conversations about prognosis, goals of care, and medical preferences at the end of life.

“I realize it’s difficult for them a lot of them it’s not easy to bring up the topic you’re getting stonewalled by patients they don’t want to hear it and the families making faces and saying what are you telling us and the whole bit but just the very basic communication skills get down to the patients level I mean how simple is that and don’t stand there like you’re ready to move on, and checking the blood pressure and ready to move just doesn’t cut it. And have something to back up what you’re saying because we all hear and learn differently whether it’s visual or oral”. – 103

“He was very snobbish. Just the way he came out with it not preparing us that he was going to talk about it. Here she thought my mother must be dying, no she’s not why are you talking to her like that?... He could have said we’re going to talk about if you’re prepared but instead he came out and whatever he said it was not taken how he probably meant it”. -302

Beliefs about Capabilities

Documenting ACPs is difficult due to the uncertainty around future health care needs.

“I don’t know what I’m going to need that’s the problem”. – 701

“It’s hard to put all these things together when you’re the person concerned and if you’d knew more as to what was going to happen to you and this type of thing you might be able to do more but you don’t know whether you’re going to become unconscious or whether you’re not and all this and it’s hard to imagine what it’s going to be like”. – 617

Beliefs about Consequences

Denial of seriousness of illness

“As a person with emphysema I know like it’s a dead end. Is that the right work to use? It’s a matter of time, some people last two months, some last ten years it all depends on the individual and how they look at, or the steps the take towards their own health. That’s what I think, my father died from emphysema and he had that since the age of 35 and he died at 56. So what do you do, how can you tell? I don’t think it’s a good thing for a doctor to say he has two months to live, I don’t think it’s the right thing to do”. – 91

“Well I think there has been certainly some very normal denial on your part and you have said more than once that you just really don’t want to be thinking about this”. – 103

“I don’t think nobody knows what the end is going to look like. Some people are lucky and they go in their sleep and some aren’t lucky they suffer longer. So I don’t know, I just….the way that I look at it now is it’s just a question of time until I recover and I don’t think it has a real impact right now in my life except for the time being I can’t do much”. – 601

Social Influences

Negative reactions about ACP discussions from family.

“My daughter got pretty mad about that, she’s not dying why do you want to talk to her about dying?” – 302

“We’ve started [talking about ACP] but they [children] don’t want to talk about it”. -103

“My daughters don’t want to hear about it… my youngest son is 54 and it bothers him very much and I said why? My life is an open book, why does that bother ya? He doesn’t like to see that. My oldest son is the one with the authority and I tried to talk to him about it but he sort of cleared that conversation. They don’t like to hear about it because I have always been outgoing and never sick except for the past two years and they find that hard to except”. -20

“<Name> he just says mummy I don’t want to talk about like when I was just out there as you know and he just I mentioned it briefly to him and I said <Name> were going to be talking to you about all this and he said mom I don’t want to talk about it and wrapped his arms me and started to cry you know”. – 701

Environmental Context and Resources

Timing of ACP discussions.

“It was just the timing I guess and its very I’m going to use the word awkward I don’t know if it’s an appropriate word but yes the timing was off, I don’t need to talk about this today, I want to focus on getting well”. - 612

Patients’ perceived physicians were in a rush

“The people on the medicine unit were running out of time and had to get the task done quickly and did not have the time to take the time to discuss it in more detail”. - 103

“I found the doctors at the <Hospital name> really didn’t seem to have the time, they were quite hurried and under a time crunch”. – 618

Hospital is not the appropriate place to have ACP discussions

“Sometimes in the hospital the ambiance is not very good cause I was in a room with two swearing people and they were screaming all night. The ambiance is not nice to start talking about this. In a private room maybe it’s different….I think it was not the place to have it right now it is the place to have. My place I am comfortable. I think it’s more cozy and more personal”. - 91

“First not in the room that I was in. They should have more private rooms you know. There’s the…they call it the T.V room and there’s never anybody in there. It would have been nice for them to have said let’s go and talk there or if I am alone in the bedroom then yes but not when there’s a sick person like that [beside me]”. 302

Optimism

Focus was on getting better not on possible end-of-life situations

“I was surprised by it as it was a very emotional time and so I guess I was trying to focus on whether <Name> would get well or not and so it was a little disturbing emotionally”. – 612

“I’m lying there in bed and I think I’m going to get better and I can imagine that 90% of people think they’re going to getbetter or their hoping their going to get better and then the doctor comes in and say’s you better do some thinking”. – 910

Coping by living in the moment.

“I don’t want to talk about it to be honest with you. I want to live day by day and like you know what happens happens. One day I’m ok and the next day I’m not and that’s the way you have to take it. You have to take it day by day”. – 91

Emotion

ACP discussion brings up fears about loss of independence.

“I’ve been so independent I mean I brought up three kids on my own had no help, worked three jobs all my life, you know and now a lot of my independence has been taken away from me and that’s just killing me. That’s the part that I don’t like like when they discuss this part, like they did yesterday and I started to cry. You know because it’s just hurting me because there is just so much I can’t do anymore”. – 701

It is hard to talk about ACP because I am scared of death.

“I just get very scared, very very scared of death”. – 701

Memory, Attention and Decision Processes

Very little recollection of the ACP in hospital conversation.

“Vaguely, I do. I was not in good shape. I was shaking, and had tears in my eyes” – 100

“Because I had everything in order I didn’t really pay that much attention, I guess because I thought I had everything in order”. – 705