Table 2:
| PCP Themes | Example Quotes |
|---|---|
| Varying Views on the value of discussing long-term prognosis | |
| Helpful | For some patients and for some families having this information is really helpful. It may not be for everybody but I think knowing that you can access this information and use it, for some patients and families in certain circumstances can be really, really helpful. (FG1, PCP8) |
| For short life expectancy | It might be more appropriate for somebody with a cancer diagnosis or a terminal diagnosis. (FG3, PCP4) |
| Prognosis is helpful | I would be excited to have tools like this. (IntPCP1) |
| For high literacy patients | The ones who are very educated, they want percentages. (FG5, PCP5) |
| Unhelpful | For most of my patients, I would say it is not helpful. (IntPCP5) |
| Harmful | Whatever number they hear, they grab onto that and they think that’s it and if that’s all I’ve got, then you leave without an understanding of what that number means and in this setting, I think it would be more alarming and upsetting to this lady than anything else and not to know what to make of it. So I wouldn’t use it with a patient. I personally don’t think I would use it. (FG1, PCP6) |
| Unpredictable | I’ve had people bring in stuff about life expectancy, and I tend to dismiss it. You know, because I say, “That number is a calculation based on you know the chance of a lot of other people who have been through it, and it doesn’t really help with an individual person.” (IntPCP4) |
| Prognosis not helpful | I wouldn’t use risk calculators because then it makes it seem like we’re being robots. (IntPCP6) |
| Uncertain if helpful | I am not sure how useful these are. I still don’t know if telling someone their life expectancy is fourteen years, you know when their 65-years-old, it’s going to be helpful. (FG2, PCP1) |
| Prognosis helpful to PCP but not patient | I think it would be helpful to have an estimate. I wouldn’t give the number to the patient. (FG1, PCP5) |
| Uncomfortable discussing long-term prognosis |
It is not an easy conversation because
nobody wants to think about death. (FG7,
PCP2) I don’t think the exact number or exact final date would come up, that I would hear myself saying that to people. Its just been something kind of taboo. It’s kind of one of those things that you don’t want to do. (FG3, PCP3) |
| Facilitators of these conversations | |
| If patient brings it up | It’s on their minds but I want them to bring it up. (FG4, PCP3) |
| Doctor-patient relationship | There are some patients you just get a sense that it’s okay for you to ask these questions. There are certain questions — certain patients you just know you shouldn’t be saying things like that. (FG3, PCP6) |
| Patient informational needs | It depends on how much information a patient wants. (IntPCP6) |
| Prognosis is long | Using it where there is a positive feels easier. (IntPCP2) |
| Barriers to these conversations | |
| Unrealistic perceptions | A lot of times healthy people in their 70’s even 80’s don’t really see themselves as near the end of life. (FG4, PCP1) |
| Lack of training | That would be helpful to address with patients, but I don’t know how to do that. (FG7, PCP3) |
| Focus on what matters most to patient | It hopefully would change the framework for how we’re approaching that person’s care from less about these numbers and more about what’s most important to that person. (IntPCP6) |
*
Codes were grouped into major themes which are highlighted in bold
†
Abbreviations: FG=Focus Group; PCP=Primary care provider, Int=Individual Interview