Background
Methods
Approach and researcher characteristics
Setting
Population
Description of the intervention
Recruitment
Interviews
Analysis
Results
Participants
Theoretical domain framework
Theoretical Domain Framework Category | Theme/Belief | Quote |
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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 |
TDF Domain | Theme/Belief | Quote |
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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 |
Capabilities
Others remembered the conversation but were too sick to engage their physician in a discussion about ACP.“Vaguely, I do. I was not in good shape. I was shaking, and had tears in my eyes”
However, knowledge also acted as a barrier for many participants in this study. First, many participants lacked understanding about their own health condition(s), prognosis, and what they were planning for. Second, for some patients there was generalized misunderstanding about ACP, the components of the planning process, and the role of advance care plans in relation to incapacity and consent. This lack of knowledge was exhibited by participants who often considered ACP to be synonymous with decisions about CPR, power of attorney documents, and/or living wills. In addition to this confusion, many participants believed that ACP was about finalizing funeral and financial arrangements for one’s death and felt that the in-hospital conversation was not necessary or helpful since they were already prepared for their own passing.“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…”
From these accounts, it appears that some participants were more prepared for death rather than states of incapacity. This suggests that lack of awareness and understanding of ACP is a barrier to engagement in the process.“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…. Now the advance care part, I haven’t really thought too much about it.”
“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”.
“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”.
Opportunity
Participants also raised concerns about the appropriateness of conducting ACP discussions in hospital rooms where there is often a lack of privacy and confidentiality. These participants believed that lack of privacy made communication challenging especially when discussions revolved around sensitive and emotionally charged topics like prognosis and goals of care. Finally, participants also perceived that their physicians lacked the time needed to engage in thorough ACP conversations.“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”.
Motivation
Others denied that that death was likely and therefore thought that ACP was not a useful or relevant activity.“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”.
“I don’t think nobody knows what the end is going to look like… 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 (ACP) has a real impact right now in my life except for the time being I can’t do much”.
Some participants did not want to think about or plan for the worst-case scenarios and described focusing their energy on living in the moment. Planning for the future was secondary to living now.“I just get very scared, very very scared of death”.
“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”.
Many participants had difficulty simultaneously balancing their hopes for the future alongside their need to plan for changes in their future health.“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 get better or they’re hoping they’re going to get better and then the doctor comes in and says you better do some thinking”. – 910
For patients in the right frame of mind, ACP discussions in hospital reinforced the importance of end-of-life planning.“I think I can appreciate that they were reminding me, 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…”
“…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 mother’s papers, what did she want?” – 973