Table 1 Facilitators to Patient Engagement in ACP Post Hospital Discharge

Knowledge

Conversation outlined what’s involved in advance care planning.

“Planning requires more than just have done the power of attorney for personal care, that it requires having a frank conversation with your loved ones about what your wishes are and perhaps a little more specifically than what the power of attorney entails”. – 612

“It surprised me because when he talked about advance care planning I had no real idea what he was talking about but I presumed it was related to my illness at the time and what I could expect in the future in terms of additional care right and so when he came in and started explaining what this is about it was ah ok I haven’t spent a lot of time thinking about that and so subsequently I have as a result so I think that was the biggest benefit of the visit was that it spurred my mind in a direction that I had taken it before in any serious way”. - 618

ACP workbook presented new information that made me reconsider my prior thinking about care preferences.

“The book gave a little bit of a hiccup in that that I guess I don’t know how to put in words the in-between stage that I see now… I just felt that if you had to be resuscitated that you wouldn’t have any quality of life but if there is a chance of having quality of life for some reason then I would be ok with it.” – 705

Skills

Quality of interaction with the physician.

“I think that’s critical to be able to communicate in a way that the patient can possibly understand what you’re talking about and to be really clear about the prognosis of somebodies illness because that’s probably sometimes hard information to give out but I think a doctor that withholds some of that or disguises it with terminology that is not well understood is not doing anybody any favors. So I think really beyond the technical capabilities communication skill is important and that to me has got to be the most important thing to be able to speak in a way that is understandable and clear”. –618

“The doctor in ICU last Saturday was excellent and he sat down. He knew that made a difference and had to go find a chair to bring over to sit down. In fact he was very touchy feely”. – 103

Beliefs about Capabilities

Talking about death is not difficult due to religious beliefs.

“I am a person of deep faith and so death is part of your faith and umm it’s just not something I have shied away from thinking about….I lost both of my parents in my twenties. We also adopted a child and he was a crib death two weeks after my father died so the death umm the knowledge and experience of death was early in my life”. – 973

Beliefs about Consequences

Death is unpredictable.

“I have to get my rear end in gear and get all this stuff in place and you know something could happen to me because I have been told by several doctors that the next time I could die”. – 701

Social Influences

Decisions about future care are relational.

“Being able to communicate my wishes to my family so that they understand them and have an opportunity to discuss them with me so that in the event of one of the circumstances coming up where a decision has to be made at least they have understood and appreciated in advance that’s what I would have wanted as opposed to being a surprise because in some cases they may totally disagree with the approach that I want to take. For example, you want to fight for every breath, live as long as possible no matter what vs I have no future therefore no unusual measures to prolong life. Well without a discussion that could be heartbreaking and so I would like to avoid that by being open about it that’s the only way”. – 618

Environmental Context and Resources

Discharge is an appropriate time to discuss ACP.

“I’m glad they talked to me right before discharge, I think it would have been a waste of time had it been a couple of weeks earlier. Ya it’s a time where you’re thinking about these things if you suffered a serious episode like I had and its things that are on your mind in any case so to be given some guidance at the time was very useful I think”. – 618

Emotion

Normalizing ACP conversations makes it easier to talk about and to accept.

“It’s again like I said the more people who know, the more you discuss it, the more you think about it, it becomes easier for everybody”. – 92

Reinforcement

The Speak Up workbook encouraged me to engage in ACP planning.

“The booklet helped to reflect on certain things and I think I got more information from the booklet as to what really he wanted me to think about…I think it helped pinpoint certain things that I had thought about and reinforced those things”. – 606

“This is a personal decision that requires a lot of thought and I think this brochure (Speak Up) along with the various websites that it refers to really allows you to have the information available to help that decision making process”. -618

Hospital conversation encouraged me to think about and document ACP.

“I think I can appreciate that they were reminding me, us that there were things that had to been done…. A realization that there were a whole number of things that we had to talk about and plan for and I am still feeling like I may have a day or two left” -103

“Since I’ve gotten out of the hospital I have made a couple of appointments with my lawyer, ok I had a will made up 20 years ago and I wanted it updated, so I have two power of attorney’s now… So they will make the decision for example that there will be no resuscitation that’s all been settled and we talked about it”. -606

Hospitalization a catalyst for advance care planning.

“I’ve thought about it before because I was in the hospital two years ago with heart failure and at that time I said you never know when somethings going to happen it could be tomorrow. And then I sort of let it go. Then I was in the hospital again this time and they had to take me off certain blood thinners and perform certain interventions and they said there’s always a certain risk that because were taking you off blood thinners you could have a blood clot or a stroke. Ok it’s my third time in the hospital for major things, I could have been a goner for all three of them so I said no I’m not going to wait for the fourth time so that’s what really…it was in the back of my head before but I would say ya ya it’s a ways away but this one it really hit home more than the others”. – 606

Intention

Relieving the decision-making burden on my loved ones.

“Basically at this stage of the game I am 84 I have lived a very good life, lots of tragedy in it but by and large a good life but it’s very important to me that my passing will be eased for my children. I don’t want any of this great upheaval, where are mothers papers, what did she want?” – 973

Goals

Planning for place of death.

“My husband died here in this house and I knew the last week what it was and he wouldn’t make it. The doctor came after his death would you believe that Dr. <Name> came at 11:30 at night and all my family was upstairs in the bedroom and he said do you know what a beautiful death this is? He said you go to the hospital and this isn’t the same thing. He said you have all this family around and that’s the way I want it… I want to die at home”. – 20

Memory, Attention and Decision Processes

Recollection of the in hospital conversation.

“What I remember, what he told me was that I had to think about my future and that I also have to think about myself…Yes it matters because I have to think of the future, I just can’t go on day by day and not worry about anything I have to you know”. - 701