Subjects and Study Design
|1. The relevance/importance of ACP as a whole||“I'd rather deal with it now when I have all my faculties than later when I might be in distress and maybe not in a good frame of mind and maybe not pick the right result. The right decision.” (76, M)|
“With respect to my own, I made sure that I have advanced directives and I'm talking to my children and letting them know. I will do exactly what my own parents have done because I see many other people who have no idea; they just haven't shared anything. It's very important! People need to talk; they need to let other people know what their plans are.” (62, F)
“I think doctors should be fully able to discuss all alternatives and all outcomes with the patient and be realistic about it and not engage in anything misleading. I think that end-of-life planning is extremely important and everyone should have to do it because you need to think about your own mortality. If you don't consider your own mortality, you are fooling yourself and I think it's dangerous because when you do experience a disease or a condition, which leads to the end of your life, you're not able to deal with it in the same way. So I think that getting doctors to deal with death is really important.” (76, M)
“For the millennial[s] especially, they don't want to hear it. They don't want to talk about it. But, you have to make them aware.” (65, F)
“I think, they [AD] serve a purpose, they help the patient, clarify for him or herself what it is that they want, which I suppose can be reassuring to know that you thought those things through. How much that translates to what care is that you receive, I don't know. I've only had my mom's experience and my own, where I was mostly deeply offended that she was asking about ADs cause I wasn't planning on going anywhere.” (63, F)
|2. Independently conceptualizing wishes and preferences for the future||“It's hard to be very specific to say we're going to do it this way and it's going to work. People have to come to terms with that on their own. You know, I think having it, presenting it to the patients, giving it to them, letting them have it, reminding them if they haven't done it periodically. You know, we gave you the advanced directives; you haven't given it back, have you thought about it? That's how I would like for it to happen to me.” (70, F)|
“Like, one of my co-workers had lung cancer and she went through the chemo and all of that and she lost all the weight and at some point she just told them ‘Stop. I've had enough.’ I think that's how I am. If you know you can't cure me then stop putting me through all this and just let me go peacefully. So I mean, all of us want to live forever, but I think the quality of life is very important.” (70, F1)
“I've been aware of advanced directives for many years and I'm not sure how or why. It may have been on connection with my father and his death or maybe my mother. I've been aware for a number of years and I was glad to get it in the mail. I was just glad to get my hands on it because I've been wanting something like that.” (70, M)
“We had signed up for long-term care. If we could've afforded to have somebody at home, we'd have had somebody at home. I'd rather be at home.” (88, F)
|3. The process of engagement in ACP discussions|
|i) Engaging with family members||“She [referring to her daughter] doesn't want to hear that mom could die and she said, ‘I don’t want to hear about you dying, mama.’ But, I'll just make my wishes be known.” (70, F)|
“I feel like we would be on the same page. It's a conversation we could have. Next time she comes home when it's quiet.” (63, F)
|ii) Engaging with primary care clinicians||“We [patient and primary care clinician] just dealt with it like we deal with everything because over the course of time you kind of build that kind of relationship.” (64, M)|
“So she [primary care clinician] explained it to me and she filled out the form as I explained different things.” (69, M)
|4. Different outcomes of ACP discussions|
|i) Formal documentation of health wishes||“We [patient and primary care clinician] went over that [advance directive] today. I've had advance directives for 30 years or whatever but I had to qualify a couple of things on it because I wasn't 100% sure on the wording; just because of the form.” (69, M)|
|ii) Revisiting wishes and updating future plans||“I have updated it [advance directive] twice. The first time, my husband was the decision maker and then he got sick. So I had my son, who's also a physician, as the decision maker but then he moved. So he's not accessible, you can't reach him, and he can't be there to assess the situation so I changed it to one of my other sons.” (71, F)|
“After my mother's experience I really want to look at it [advance directive] again because I want things to be more precise. I don't want to live my life on a respirator and you know if that's what's keeping me alive but I don't want to be left on the floor either so I think the terms have to be tightened up a little because she had an advanced directive and that's what they were using and the terms obviously weren't tight enough.” (78, F)
“Once you make them [referring to wishes], you get invested in them, you don't want to change them.” (63, F)
|iii) Selecting a health-care agent||“The healthcare directive, and maybe it's my own interpretation, when I look at it, it's a list of suggestions. The ultimate decision is the named advocate for you. They know what you prefer, but if they ultimately decide something different, it's because you trust them. You're naming them and you trust their decision.” (71, F)|
“The bottom line is you can do advance directives and people that care about you are going to do what they want unless you've got somebody who is really going to enforce it.” (63, F)
The Relevance/Importance of ACP as a Whole
Independently Conceptualizing Wishes and Preferences for the Future
The Process of Engagement in ACP Discussions
- 1.Engaging with family members: Although patients thought it was important to have discussions with family members including children and spouses, they thought it was often difficult to do this. Patients focused predominantly upon discussions with their children. Some patients reported that their children did not want to engage in such discussions due to emotional concerns; however, their children eventually understood the importance of these discussions. Some patients had formulated their wishes and preferences on their own and only wanted to inform their children to make them aware about their wishes. A few patients were at a stage where they wanted to engage in discussions with their children to help formulate their own wishes.
- 2.Engaging with primary care clinicians: Most patients had interacted with their primary care clinician about ACP as part of the initiative. Clinicians mostly asked patients about AD forms, which were sent out to patients as part of the clinic's ACP initiative. Patients indicated that they did not often have a detailed discussion regarding their preferences and values of care with their primary care clinician; however, they expressed that they were open to discussing ACP with their primary care clinician and felt comfortable with their primary care clinician initiating the discussion, especially in the context of a long-standing relationship. Some patients preferred to approach clinicians for clarification regarding terms in the AD form and choices.
Different Outcomes of ACP Discussions
- 1.Formal documentation of health wishes: ACP discussions helped many patients put their wishes in writing as a formal document. For other patients, they felt these discussions were especially important when they were reluctant to document wishes and preferences on their own. Patients worked with clinicians or trusted attorneys, who they were familiar with, to assist them in documenting their health wishes. One patient mentioned how terms on the AD forms were sometimes complicated and too specific, and thus, they needed help from a primary care clinician in order to complete it.
- 2.Revisiting wishes and updating future plans: Some patients' ACP discussions involved revisiting their wishes and future plans and resulted in patients either reconceptualizing their wishes or redoing their AD. These changes were motivated by life circumstances changes, such as having a health agent or power of attorney move away, pass away, or become sick. Patients also revisited their wishes and preferences at the end of life after experiencing the death of a loved one. Other patients did not see the need to change their wishes and felt that their values and decisions had not changed.
- 3.Selecting a health-care agent: Discussions with family members often served as a trigger for patients to search and choose a health-care agent. Patients expressed their feeling of trust toward an individual informed who they chose as a health-care agent: someone that knows what is important to the patient and will follow the patient's wishes. Patients thought that if they were unable to make decisions for themselves, their health-care agents' input and decisions would override the contents of the AD. Thus, choosing a health-care agent that they could trust was crucial to patients if they became incapable of making moment decisions and when emotions of loved ones interfere with known wishes.
Disclosures and Acknowledgments
Appendix. Abbreviated Interview Guide
- 1. Have you imagined a time where you were sick and couldn't talk or make treatment decisions for yourself?
- 2. Have you been asked or informed about planning for future illness? If yes, how were you informed?
- 3. Have you ever discussed your future care plan with your provider?
- 4. Have you written or signed anything to make your wishes known such as an advance directive plan? Do you have an advance directive or any other formal documentation? How frequently would you be comfortable updating it?
- 5. What do you see as the main gaps in quality of care related to advance care planning and/or care in general? What are some of the barriers of having high-quality care?
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