Table 4.

Framework Preferences From Focus Groups

Emphasized Preference	Question Posed	Sample of Supporting Quotations
Patient Focus Group Themes
A desire for clear language	What do you think about the presented format to help you document your preferences?	“I would like to see…the various levels of care that could happen in the event that I cannot communicate, starting with a DNR at the top, which I think is probably the highest level.” “There are [emphasis] levels in between that [DNR] and just giving me an aspirin.” “Explain what the different options are…. The DNR and the ‘withhold’—explain that better.”
	What did you think about the forms and the language used?	“I thought it was very clear, very concise. I was, um, glad to see that definitions, words defined because, uh, one person’s concept of a word may not be what is legally the meaning.” “The language wasn’t so medical or legal that it wouldn’t be clear to a layperson.”
Endorsement of MyChart as a helpful communication tool	Do you think MyChart would be helpful for ACP documentation?	“My doctor gets back to me right away. It is so easy to use. I don’t know what I did without it.” “It gives the person the time and that chance to do it [ACP] whenever they feel like it pretty much.” “I could do it [ACP] in the middle of the night, or I could do it when I first wake up or however I feel.” “You can do it [ACP] when you’ve got the time to do it.” “Sending out ACP questions through MyChart would make it easier for doctor to answer the questions without taking up too much time.”
A need to qualify and disqualify preferred decision-makers	Are there any questions that you feel must be included in the electronic questionnaire?	“Is there anyone you specifically would NOT want involved in helping to make healthcare decisions on your behalf?” (Echoes: “mmm-hmm.”) “My husband and I put it in writing, if I get really sick, the forms say ONLY MY SON (emphasis) will make decisions for me, NOT my daughter.” “Cuz when you’re sick and in bed, you can’t do nothin’, you can’t talk, you can’t tell nobody— so somebody gonna say somethin’… Who? You have to give it to a family member? Which I wouldn’t trust.” “Everybody has one in their family.”
A desire to personalize content, often based on previous experiences	Are there any questions that you feel must be included in the electronic questionnaire?	“Past experiences, um, with loved ones and family members, uh, can definitely shape your opinion how you face, uh, situations for yourself.” “It seems to me that the, um, your previous experiences will certainly influence and probably inform the choices you have.” “Any problems, issues, or even successes that are in your [health] experience, probably want to be discussed with the doctor.”
	Is there anything else?	“It would be great if there was a page for this kind of stuff, you know.” “I could write an essay on this stuff [ACP].”
Wanting to know “vital” information only		“Reflect away! Reflect away! Just don’t give me the answers!” “Or you know—so those are, those are things that I need to know as far as medical decision making for that patient.” “Are there any important details that you, after doing this reflection, are there any important details I should know, such as—maybe give them a few examples or something like that.”
Application of broad questions for reflection purposes only, not clinical decision making		“… it’s such a broad question, I fear what might come back…. Do all of that thinking and then come back to me and let me know what is it that either I can help you with or that you want me to do.” “If you don’t know where to start, here’s a great question for you to start with: What is quality of life? What’s important to you? But yeah, as far as this like return to me, like—yeah, no, no thank you.”
Accessibility of the framework in a uniform location within the EHR		“…There isn’t really a place that we can put that where people are going to find it. I’ve tried to put in, you know, if a patient says, “Oh, I’d really like my sister, and not my mom.” Like I put that down, but is anyone really going to look at that? I don’t know.” “So it needs to become this kind of cultural shift to some extent as far as—it’s there, it’s in a consistent spot, and people go to look for it.” “…It’ll be interesting for me to know, to learn more about my patient, but it…I don’t want that to be, I don’t want those other really important things to be lost.” “…That has to be, and then, in the ideal world, that’s in some part of the chart that everyone can access…”
Staff support for responses to patients		“Structurally to have support staff do it and trained to do it because it’s not really anything that other people can’t do.” “…The staff sees that there’s someone scheduled for a physical or one of our high-yield patients are scheduled for an appointment next week, that you could send out some information about advance care planning that they could complete before the visit, send to me before the visit, I can review before the visit. Then that makes the conversation in the room much more focused and shorter.”
Desiring reimbursement for time spent on MyChart-based ACP communication.		“But it’s not well reimbursed and so it’s a matter of, you know, how much time are you willing or able to spend there too? So right now there’s—the only big incentive to use it is to make people happy.” “…Because it’s so poorly reimbursed and takes so much time, is that is a supplement for your care in the office and not a replacement for your care in the office …So if it’s a supplement, fantastic. If it’s a replacement, it’s just going to end up consuming too much time.” Facilitator: “So are there other things that would make the whole MyChart process more appealing to you or easier to you?” Reply: “I think if it were reimbursed and we would get credit for the time—” Facilitator: “And is that a possibility? Is there a push for that at all?” Reply: “In theory, there are some things that you can be reimbursed for, but one of the problems is that it can’t be physician-initiated.”

ACP indicates advance care planning; DNR, do-not-resuscitate order; EHR, electronic health record.