Mailed Materials Participants’ Changes and Experiences Related to ACP Readiness
| 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) | ||