Table 2.

Patient's Reasons for Participating in the Advance Care Planning Group Visit

CategoryParticipant Mentions, n (%)Exemplar Quote
Recognizes importance of advance care planning34 (30%)“I want to get everything taken care of so my kids don't have to do it and they will know exactly what to do when the time comes. My mother and dad did that for me.”
“I feel this is going to be good for me too. It's something that my husband and I need to think about. We were hoping it would help out [our daughter, now deceased], and I know now that it's something that we all have to think about.”
Recommended by primary care provider27 (24%)“We [a married couple] were advised by our primary care physician to attend the meeting and so we're here to learn.”
Curiosity23 (20%)“I'm here because I wanted to know what you have to say, know what other people are thinking. There are some things I've had problems with making decisions on… . Mainly I wanted to know what other people are thinking and planning especially with the life support.”
“I'm his wife. Some time ago we made the will, or whatever you call it. And we have 8 children. They are very supportive. They don't want to talk about this, so we really haven't … but I have no worries. I'm interested to see what is here.”
Revisit existing advance directive forms19 (17%), including 3 (2.6%) related to relocating“We've done quite a bit of paperwork and stuff, but I keep seeing things that apparently we are missing or something like that. And we probably will have to redo things, like a will or something. It's been a long time. But I'd just like to make sure. “Cause every time I have these forms, they are different. And I get different stories about them.”
“I've only been in Colorado about a year and a half and each state does things differently. I had some of the stuff already done when I lived in Texas. I really don't know if it's good here or not, so I'm here to get information and see if what I do have is any good or not.”
Personal experiences17 (15%)“I was [my husband's] caretaker this past year and he passed away less than a year ago. What brings me here is the fact that he was in really good health. He was a skier at 76 and it was cancer and the surgery did not go well and he was in ICU for 45 days and never came home. He did leave medical directives but it turned out not to be as comprehensive as I think I would like mine to be.”
Outreach by letter, call, flyer14 (12%)“I saw your poster. And I was having an appointment with [Dr. M.], who is my primary care [provider] and she asked me if I would be interested and I said yes.”
Desire to talk with family13 (11%)“I have three sons and they don't want to hear anything about it … wish I had a daughter. I'll have to impress upon them what I want.”
Age11 (9.6%)“I'm not a spring chicken any more, better start thinking about putting things in order. We talked about the attorney or the medical living will and so on. It's always good to get all those things in order.”
“Why I am here? Because I'm old [laughing] like all of us here and of the decision that we either avoid making or it's never the right time and that may be something that, you know, I'll find out a little bit more what is the right direction, what do I envision for myself.”
Suggested by loved ones10 (8.7%)“I just came because my children thought maybe I should get some help!”
“I hadn't begun to think of any of these questions in my own mind, but we received a form letter of inquiry about the group session and through the diligence and organization of my wife, we're here and hope to gain a lot.”
Complete advance directive forms8 (7.0%)“I just wanted to make sure that the formal forms or whatever are available to medical personnel so that my wishes, as far as end-of-life issues are followed—what I want done, or not done.”
“I'm here really to figure out what forms do I file where and so forth. It's sort of confusing to me.”
  • We identified 115 statements from intervention participants and analyzed their stated reasons for attending the advance care planning group visit. Percentages are >100% because >1 reason could be coded per participant statement. Four participant statements (3.5%) did not have an identifiable reason (eg, “I'm just here”).