Table 3:

Main Themes and Example Quotes Emerging from Patient/Family and Physician Focus Groups

Patient and Family Member Themes	Patient and Family Example Quotes
1. Patients commonly do not discuss CPR with their clinicians	“I have to talk to my doctor…she didn’t explain it the way it should have been explained.” “So I haven’t [talked to my doctor]; I haven’t even thought about this.”
2. Patients and families value honesty and comprehensive sharing of information	“Oh, I think she was right on. She was very honest…” “I like the way the doctor came and told the patient what she’s up against.” “The level of honesty and respect that the doctor had…that’s very important to me.”
3. Poor outcomes associated with CPR are not commonly known	“Wow! That’s an eye-opener.” “Your mind is programmed, you know, we see it on TV and stuff. They guys either lives or dies and um…I didn’t know that your ribs could be broken …your chances of survival are …so poor
4. Patients and families often agree with clinician recommendations but want to remain in control of their choices	“I don’t think that’s the doctor’s prerogative…” “Leave it up to the patient. Let the patient decide.” “What I think she could’ve done, was not be so definitive; ‘Do you want more information about your choices?’ You know, to give the patient more opportunity to make a decision.”
5. Most are comfortable with the framing of the informed assent approach but highlight the importance of bedside manner and empathy	“Very cold and aloof.…Just show that you care about your patient……Hold my hand!” “I didn’t like the punch line. Get a second opinion.” “I’ve never heard a physician be that clear or upfront with a patient.” “I think it was a good approach. I think it’s always, um, best for a doctor to be as straightforward and honest with you. You know – this is how it is, instead of beating around the bush.” “The approach was really good because she gave all the information that she needed to make the decision whether she would like to be resuscitated or not. The fact that she probably won’t go home. They could probably actually hurt her, rather than make her better.”
6. There was strong preference that one’s trusted physician deliver the recommendation	“I’m pretty close to my primary care doctor (some cases…oncologist/cardiologist), so I think she would be the one I’d want to talk to…first.” “And that (relationship) plays a big factor because you actually trust these individuals….to have the conversation”
7. Faith/spirituality play an important role in participant reactions to discussions about CPR and other healthcare decisions	“I think everybody should be brought back and every possible thing should be done to keep somebody alive.” "I ultimately feel that it’s Gods decision if we live or die, how we are going to die. It’s going to be ultimately his decision whether he wants to go ahead and take you or whatever the case may be “It’s all about prayer for me.” “Doctors can say one thing, but the Lord has got something else in store…”
Physician Themes	Physician Example Quotes
1. Physicians vary in their attitudes about informed assent with some considering this as an appropriate approach and others believing it is too paternalistic	“It’s a paternalistic approach, but there are times when you need to pull out paternalism.” “I liked how you framed it in the context of what is important to the patient.” “Rather than assent I almost prefer … advise and consent. I’m very happy to advise the patients if they want to, but then it’s them and their family that decide that consent.” “I don’t mind having these conversations, I think they’re great to have and I don’t mind informed ascent with somebody who I have a relationship that I’ve known” “It sounds very heavy handed. I don’t really think people need to be told that your chances of surviving an in-hospital arrest and going on to a functional life expectancy is in the 2–3% range”
2. Physicians vary in their current practices of informed assent	“Well, it’s similar to what I do [for] somebody I don’t feel will benefit, I will let them know that I think that, you know, that’s a therapy that’s out there but it’s therapy that I don’t recommend.” “I’m going to make this sounds so scary that no human being in their right mind would accept CPR” Certainly, a big departure from the way CPR is discussed in my experience.”
3. The context and timing of discussion was viewed as critically important with cultural, family, and religious implications	“And you know, very frequently, it’s harder to get a do not resuscitate order from African American families because there’s like a heavy religious component” “Unless you bring the family into this discussion and everybody is on the same page, when you have a discussion. We see it all the time battles between brothers and sisters and what mom wanted what mom didn’t want. So the informed ascent is nice thing in theory[but] when the family comes into it, if they have not been part of this discussion previously, you may be totally backpedaling, no matter what your patient said.” “The other thing is also around religious and ethnic backgrounds. Case and plan, I’ve taken care of catholic patients who are near dead, and because to withdraw care would be the equivalent of suicide, and from a religious standpoint they are just not going to do this no matter what.”
4. The majority of physicians want to be personally involved with these discussions for their patients and preferences may vary by specialty and setting	“I would not feel comfortable having a researcher of any variety coming in to talk to my patient.” “The person (clinician) who has the longest relationship…should have these conversations”. “It really challenges us because the whole premise of this is based on a physician-patient relationship and it’s patient-system relationship as much as anything else”. “I think that in the office or primary care setting or a continuity setting when you know people well, you know when you can have that level of discussion more easily.” “Most of the time I agree with this informed assent type of approach – but only after we have a mutual understanding, a mutual respect and know the patient and the family very, very well. In oncology it might be, ah, a little bit different from the emergency room or ICU setting”.