Table 2.
Framework of needs expressed by stakeholders with exemplars
| Theme | Exemplars | Total N (%) | ||
|---|---|---|---|---|
| Patients (%) | Surrogates (%) | Clinicians (%) | ||
| General Advance Care Planning Needs | ||||
| Learning about future health states | Patient: “I think they’d have to see what it’s like to be in that situation, and this is what you’re going to have to deal with. And maybe you don’t want to do that, you know, this is your other option.” | 48 (96) | ||
| 19 (91) | 18 (100) | 11 (100) | ||
| Clarifying values | Clinician: “I’d like to know what things are most important to them and in particular, are there any things that they think the loss of them would be so great that the burdens or medical treatment wouldn’t be worth it.” | 47 (94) | ||
| 20 (95) | 18 (100) | 9 (82) | ||
| Communicating with family and clinician | Surrogate: “That would be good especially if the patient and a caregiver were watching together. Because as the patient was looking at what’s going to happen… then they can share those thoughts. The caregiver could say, ‘What do you want me to do? What’s your feeling about this?’” | 43 (86) | ||
| 19 (91) | 17 (94) | 7 (64) | ||
| Remembering past experiences | Surrogate: “Because it was hard watching my mom just for 11 years, just lay in the bed. So, I know he [my husband] doesn’t want that.” | 34 (68) | ||
| 18 (86) | 15 (83) | 1 (9) | ||
| Acknowledging uncertainty | Clinician: “This is a population of patients that have a real decline-unpredictable. Some of them it’s two years, some of them it’s ten years. But that’s been a very important part of how I prepare them for what is likely to be.” | 28 (56) | ||
| 10 (47) | 14 (78) | 4 (36) | ||
| Learning about principles of surrogate decision making | Surrogate: “I have to talk to him about it and we have to really know exactly what we want to do or what he wants to do. But I will honor his wishes even though it may be against my own.” | 23 (46) | ||
| 11 (52) | 9 (50) | 3 (27) | ||
| Desired Features in an Advance Care Planning Tool | ||||
| Watching videos about likely future health states | Patient: “it would give you a mindset of what could happen to you. If you actually see it, you have time to dwell on it and work it in your mind and be comfortable with it. I’d rather see a video, see what the possibilities are.” | 45 (90) | ||
| 19 (91) | 18 (100) | 8 (73) | ||
| Watching video testimonials | Clinician: “I think having testimonials of what the experience is like, and both good and bad, would be tremendously helpful, because fear of the unknown is probably one of the greatest fears.” | 41 (82) | ||
| 15 (71) | 16 (89) | 10 (91) | ||
| Interacting with the tool | Patient: “it would give me a chance to change scenarios and say, what would happen if I do this, the outcome might be this. It gives you an opportunity to play with the results and give you a different outcome. Yeah, I like that. In fact, I love it.” | 35 (70) | ||
| 16 (76) | 14 (76) | 5 (46) | ||
| Controlling the tool | Patient: “I would want to be able to control it. So that if I got tired [I’d] be able to turn it off and go back to it.” | 28 (56) | ||
| 17 (81) | 11 (61) | 0 | ||
| Completing the tool at home on their own time | Surrogate: “I think it’d be good to do it at home. In their own time, and own comfortable place.” | 23 (46) | ||
| 9 (43) | 8 (44) | 6 (54) | ||
| Completing documentation | Clinician: “I’d love to see the program give you a summary of your choices, [then] let’s schedule a meeting a month from now and we’ll go over it. That’s perfect, that’s perfect.” | 13 (26) | ||
| 3 (14) | 1 (6) | 9 (82) | ||