Table 2.
Structural and Content Codes Related to Treatment Preferences and Decisions
| Structural Code | Content Code | Definition | Example |
|---|---|---|---|
| Parental considerations affect preferences - yes | |||
| Treatment for time | Undergoing treatment with primary goal of having more time to be alive. While this is often so they can be alive to parent their children may also includes desire just to be alive longer. Includes concept that parental status is motivation for treatment. Includes concept of desire to stay alive until the child or children is older. | “Especially with the age of my youngest, I would say that I would be willing to endure whatever treatment…just whatever I could do to be around longer.” | |
| Just Until | A desire to live until a specific milestone or specific event can be reached. High overlap with treatment for time code. There is a specific event that patient describes as motivating reason. | “They need you, at least you feel like they do, and you want to be there for them and you want to see them grow and you want to see them, you know, graduate from college or graduate from high school, in my 10 year old’s case.” | |
| No Choice | Patient does not feel he/she has a choice in his/her decisions regarding treatment. They may also describe a choice but then state, that because of the parental role, it is not really a choice. | “When it comes down to the doctors, are you ready for it, I’ll have to say yes, cause it might give me a chance of being around longer.” | |
| Quality vs. Quantity | Balancing treatment decisions on quality of life (QOL) versus length of life. Often defined by ability to fulfill parental role. May include shifting frames regarding acceptable trade-offs regarding QOL and time. | “I would dread the imagery of me sitting on the couch, wrapped up in a blanket and I can’t go outside and [the kids] are running around. That would not, that would not be a decision I would make very easily. On the flip side, because I’m I fighter, and I’m determined to win, I’ll do what I have to do.” | |
| Parental considerations affect preferences - no | |||
| Palliative Care - No | Not Now | Statement or belief that it is too soon or not the appropriate time to discuss or confront issues that relate to the end of life | “We’re not even that conversation because I really think it’s too soon to have that kind of conversation.” |
| Palliative Care - Yes or maybe someday | |||
| Hospice - No | How I want to die | How or where they may or may not want to die. Includes references to whether they believe their child will witness the death and whether the parent feels this is a good or bad thing. | “I don’t want him to se that breakdown, I don’t want him to remember step by step his mom dying.” |
| Hospice - Yes or maybe someday |