Article Figures & Data
Tables
Survey Participants (n = 110) Interview Participants (n = 23) p-Value Mean Age (SD) 77.3 (5.7) 76.9 (5.6) Gender 0.57 Women 66 (60%) 15 (65%) Men 44 (40%) 8 (35%) Race/ethnicity 0.56 White 87 (79%) 20 (87%) Black or African American 11 (10%) 2 (8.7%) Latino/Hispanic 4 (3.6%) 0 (0.0%) Asian/Pacific Islander 1 (0.01%) 0 (0.0%) American Indian/Native American 2 (2%) 1 (4.3%) Multiethnic/Other 5 (4.5%) 0 Caregiver in past 12 months 24 (22%) 4 (17%) 0.56 Relationship status 0.43 Married 69 (63%) 12 (52%) Widowed 22 (20%) 5 (22%) Divorced or separated 9 (8%) 2 (8.7%) Single 10 (9%) 4 (17%) Education 0.26 High school graduate 8 (7.3%) 0 Some college 26 (24%) 7 (30%) College graduate 20 (18%) 6 (26%) Any postgraduate or professional education 56 (51%) 10 (44%) Insurance type* Medicare 108 (98%) 23 (100%) 0.46 Medicare supplement 61 (55%) 11 (48%) 0.41 Medicaid 2 (1.8%) 1 (4.3%) 0.31 Tricare 23 (21%) 2 (8.7%) 0.11 Self-pay 0 (0.0%) 0 (0.0%) 0.00 Other 19 (17%) 7 (30%) 0.06 *Multiple options, such that total does not equal to 100%.
Abbreviation: SD, standard deviation.
Survey Data Interview Data (n = 15) ACP Readiness Questions Baseline Mean (n = 110) 6 Months Mean (n = 100) % change Description of findings Supporting Quotes How ready are you to sign official papers naming a medical decision maker to make medical decisions for you? 4.49 4.80 7% (p-value: 0.046) Intervention participants described being ready to name decision makers. Participants used the intervention as an opportunity to update or confirm previous choices, while those without existing documentation reported assigning decision makers afterwards. “All of my kids are very responsible people, but the one that I had chosen lives in [another state] and she has her own business that really needs her pretty tied down. I thought that's not very practical to have to expect her to come to Denver to take care of all of these things if I fall into bad health or upon my death and so forth. I ended up changing it to a daughter that lives here.” (Intervention, Participant 27)) How ready are you to talk to your decision maker about the kind of medical care you would want if you were very sick or near the end of life? 4.65 4.74 2% (p-value: 0.59) Participants reported having brief discussions with their decision makers. They did not involve decision makers in discussions about preferences. Rather, they informed them of their responsibility as decision maker once they had completed ACP documentation. “We had one big talk and now it's their responsibility. I've given them everything I can. Carrying them anymore as adult children is useless and it really—it isn't my job. I've done my part and I have had expert input and so my point is, well, this is up to you now. I took care of all my business so you can take care of me. That's it.” (Intervention, Participant 21) How ready are you to talk to your doctor about the kind of medical care you would want if you were very sick or near the end of life? 3.47 3.99 15% (p-value: 0.039) Participants reported feeling ready to discuss ACP with their doctor and that the primary purpose of doing so was to get their documents on record at the locations where they are likely to receive care. However, participants were unlikely to initiate a conversation about ACP during clinic visits focused on more pressing health concerns. “We had a brief conversation on it. I appreciate [my doctor's] view and his thoughts on all of this. Other than that, we didn't get into any of the particulars. He made certain that he made copies and gave me back what I gave to him. He put it in my medical chart. He acknowledged what I had written… it was a positive acceptance of what I had prepared.” (Intervention, Participant 45) How ready are you to sign official papers putting your wishes in writing about the kind of medical care you would want if you were very sick or near the end of life? 4.24 4.69 11% (p-value: 0.015) Group visits helped patients confirm, revise, and expand existing ACP documentation. Patients reported an improvement in both quantity and quality of ACP documentation. “We sharpened a few statements to be a little more precise with respect to some of the discussions we had there in the group, which I think made for a better document” (Intervention, Participant 45) Overall ACP engagement scores: 4.21 4.56 8% (p-value: 0.021) Survey Data Interview Data (n = 8) Readiness Questions Baseline Mean 6 Months Mean % change Description of findings Supporting Quotes How ready are you to sign official papers naming a medical decision maker to make medical decisions for you? 4.25 4.39 3% (p-value: 0.54) Mailed materials prompted participants to identify a decision maker and discuss ACP. While many have selected a decision maker, they had not formalized in writing. Participants expressed uncertainty about where this should be documented. “Well, I never gave it much thought until I got the questionnaire. And then over looking at them I kind of knew what I wanted to do, but then I had no idea when I really put my mind to it. I thought, “What would I do? How would I do that and who would be the one who would decide?” (Control, Participant 27) How ready are you to talk to your decision maker about the kind of medical care you would want if you were very sick or near the end of life? 4.25 4.28 1% (p-value: 0.89) Many participants found ACP easy to discuss with their decision makers. Most had engaged in some discussion about ACP preferences, but the level of detail varied. Many note a degree of informality in these discussions, as the conversations are not detailed and sometimes decision makers were not yet formally appointed. “Getting the advance directive and discussing things [caused us to have] a conversation with our daughter, granddaughter, and grandson and his girlfriend. They all sat around and we talked about, you know, ‘We're getting older. Things are going wrong. We need to be prepared for eventualities.’ And everybody was seemed to be open about that and encouraged us to do things.” (Control, Participant 55) How ready are you to talk to your doctor about the kind of medical care you would want if you were very sick or near the end of life? 3.47 3.59 3% (p-value: 0.64) Many participants had not talked to their doctor about ACP and expressed uncertainty regarding whether ACP is within doctor's scope (e.g. perceived ACP as a legal issue). Participants were comfortable discussing ACP with their doctor, but were unsure what doctor's role would be. “I don’t think that’s their [a doctor’s] job. And I’d just as soon go to the attorney that we went to when my husband got sick and ask him questions.” (Control, Participant 54) How ready are you to sign official papers putting your wishes in writing about the kind of medical care you would want if you were very sick or near the end of life? 4.04 4.26 5% (p-value: 0.30) Participants varied in the amount and type of documentation completed, but were more likely to have completed legal rather than medical documents. Reasons for delaying included good health and being intimidated by ACP. Reported desire for guidance (like group visit). “When you get to a certain age it’s kind of a day to day thing. And I believe in preventive care. So far – cross my fingers – things have been going well for me. And so probably that’s why I haven’t really considered filling out the paperwork as yet.” (Control, Participant 54) Overall ACP engagement scores: 4.00 4.13 3% (p-value: 0.45)
