Appendix Table A1.
Coding Scheme
| Code name | Description of code | Illustrative quote |
|---|---|---|
| Setting up the conversation | Setting the stage for the conversation (e.g., introductions, introducing palliative care) | PCC: Just an introduction. Um the palliative care service work here in the hospital um and we see people with very serious often life-threatening illness. Um we help with several things. |
| My story | ||
| How things have been | Clinical history of illness course (e.g., events of the hospital stay) | P: I've been in the hospital four different times |
| How I managea | Psychological response to illness (e.g., regarding coping, adaptation, managing) | PCC: How have you been coping? |
| P: Well, slowly I adjusted to it. | ||
| Where things are right now | Illness understanding; where the illness is medically | PCC: What's he told you about your cancer? |
| P: That it's in the bones, it's in my liver. | ||
| Where I ama | Discussion of where the person is (the self) on a timeline (of existence); includes discussion of mortality and awareness of dying and aging | P: I just didn't realize how old I was until this happened. |
| Why me?a | Questioning/offering an explanation of why this is happening (typically regarding severity of illness and/or dying) | FM: And I have to ask myself, why me? Why am I the one left? |
| Living in a changing body | ||
| How are you feeling? | Discussion of symptoms (i.e., descriptions of how the illness has felt and the history of these feelings) | PCC: How are you feeling? |
| P: I feel like a rump in the bump. | ||
| Helping that feeling | Discussion related to attempting to find relief for symptoms (including history of management of symptoms) | PCC: What's being done to help you with your pain? |
| P: Oh, anything I want. Um right now Tylenol is good. Heavy dosage of Tylenol. | ||
| My bodya | Statements that relate to what is happening in the person's body; may include reflections on loss of dignity, loss of control | P: Going to the restroom in a pan especially poop. I'm sorry it's just disgusting. |
| What I can and cannot doa | Related to discussion of capacities and ability to function (i.e., how illness affects daily living) | P: It's you know every day I can't live a normal life. |
| Exploring options | ||
| Exploring options | Practical or logistical aspects of future treatment options (e.g., surgery, radiation, medications, resuscitation, ventilation) | PCC: So at that point in time there is two options that medical providers can do. One option is to uh do what's called resuscitation or try to bring you back to life so to speak. |
| Getting home | Emphasis on home as an option and logistics of this choice (e.g., needing a hospital bed) | PCC: So to be at home you would qualify for home care. Have you ever used a home care agency before? |
| Involving palliative care | Discussion of involving home palliative services/referral to the palliative care clinic, often includes description of what palliative care involves (and differentiation from hospice) | PCC: I just want to stress too, being home with the palliative services, it's still generally the focus the same of managing any symptoms that come up, but the extras are physical therapy and just anything—a little bit extra, so it's not just end of life, but it's to give you extra support at home for whatever you need, and it allows you to come and go and do what you need. |
| Involving hospice | Discussion of involving hospice at home or comfort-directed care in the hospital (includes hospice logistics and philosophy) | PCC: Well, hospice is a philosophy of care, not a place. |
| Weighing decisions | Discussion of approach to treatment decision making, often involving weighing of trade-offs (i.e., benefits and burdens of treatment), preferably use subcode | PCC: Yeah, it's often sort of a balance between how much do we hope for as a result of any of the treatments we offer people versus how much they have to go through to get that benefit, right. |
| Talking about talking about it | Talking about treatment decision making without getting into the actual decision making (e.g., emphasis on conversation being important, efforts not to engage) | PCC: And so one of the things that we sort of need to think about in a sort, as things unfold, is what to do if you have a major turn south for the worst. And I imagine you and Dr. X have had some pieces of this discussion, is that true? |
| P: Yeah. | ||
| PCC: Do you remember talking to her about that? | ||
| P: Oh, yeah. Yeah, we've had talks about it. | ||
| Taking timea | Taking pressure off of or expressing urgency in decision making; can also be the influence of time in decision making | P: But how long do I get to wait around here and decide? |
| PCC: You know what? As long as it takes. | ||
| Readinessa | Includes discussion of not being ready previously and being ready now (or not) for treatment decisions (in relationship to hospice most of the time) | P: But I'm not ready for hospice, right? |
| Questions of choicea | Concerns about freedom to make a decision and the ability to take that decision back (often involves emphasis on control over future) | P: It's definitely gotta be my discretion. |
| PCC: Well right. I mean that's what I was, I mean that's what I was saying…cause I mean I'm glad you actually put it that way. I mean cause for me it's like that's the number one thing. Like I don't even think of it as an issue because it's always about you. | ||
| Safetya | Concerns related to feeling safe in regard to treatment decisions (e.g., in certain settings, regarding medications) | PCC: Um but we also you know the nurses main concern is keeping you safe too. |
| Connectedness and supporta | Emphasis on the care and support (often relationally, through caregiving) that treatment (much of the time hospice) can provide; may also include concerns about not being supported (e.g., by family not being on the same page) | PCC: And then hospice does provide a fair amount of support to the family. As far as bereavement. And so that's another beauty. |
| Worth and wastea | Discussion of needs and repercussions of required by person/family in regard to a certain treatment (i.e., financial, caregiving), often leading to questions of is this (treatment) worth it? Includes consideration of doing “enough” versus “too much.” | FM: He's never gonna get back to going to a basketball game with his grandkids. All those things he told me he loved doing. The things that make his life really worth it. |
| Previous experiences with deatha | Reflections on past experiences with death (often includes details of loved ones' treatment trajectories) | P: I watched my father um his life was sustained ‘til he was 101 years old…And the last two years were absolutely miserable. |
| What I want and don't want | ||
| What I want and don't want | Discussion of preferences for treatments (regarding medications or surgeries, can be future treatments including end-of-life treatment preferences, may include preferences for place of death) |
PCC: Would you want to be on a breathing machine or if your heart were to stop would you want us to do CPR to try to… P: Hell yeah. |
| What matters mosta | Discussion of priorities and goals (overall or related to this hospital stay/specific treatment); these relate to the question of “what's most important” | PCC: Can I ask what are the things that matter the most to you that you want to spend your time doing that you have? What is most important to you to do during this time? |
| P: Spend time with my wife. Spend time with fellow Christians. | ||
| Wanting to die versus not wanting to diea | Discussion of when a person would want to die or is not ready to die yet (often related to evaluation of quality of life); may include discussion of a future self (related to when a person would want to die) | PCC: Is it that you're not very happy with the type of life you're having right now? Is that the…? |
| P: If I had a choice that somebody walked in with a gun and mowed me over? Yeah, I'd take that. | ||
| Who I am | ||
| Tell me about you | Discussion of who a person is, outside of their status as a patient in the hospital; often occurs in taking a social history (assessing living situation, occupation, social supports, religious or cultural preferences) | PCC: Okay. So, tell me a little bit about yourself. |
| P: What do you want to know? | ||
| PCC: Just ah, where you live, you know, what do you do for fun. Who's close to you. Who, who can you talk to for help. | ||
| I ama | Related to how a person defines themselves (can be how a family member or a clinician understands the person); expression of a particular identity; can include discussion of who a person is not | P: I know that I'm a Christian. That makes me different, different than a lot of people. Not better, but different. |
| Looking backa | Reflecting back on life, including reminiscing and voicing regrets | P: I've lived a good life. I have no problem. I've been able to do all kinds of things. I've been all over the world. I've been in many, many countries… |
| Relating to others | ||
| Relating to care providers | Mention of relationships with other care providers (for discussion of connection with care providers or feeling disconnected, use subcode) | PCC: How long have you been working with Dr. X? |
| Connecting with care providersa | Attempts to align and establish rapport within the conversation (e.g., moments of humor); can also include reflections on connections with clinicians in the past |
PCC: It's been a real privilege meeting you…I totally wish you every healing. Just an amazing journey… P: And you really did help me so much. Especially because I'm not afraid, but I'm like 98% atheist and 2% agnostic, so you're kind of my spiritual—that was my spiritual counsel right there, and it was really good. |
| Disconnected from care providersa | Rebukes to connection within the conversation (e.g., corrections; can include hospital interruptions); can also include discussion of frustrations with past providers | P: You sound more like a doctor to me. |
| PCC: [silence] We're the kind of doctors that support both the body and the soul through these difficult illnesses…That's our specialty, what palliative care is all about. | ||
| P: The soul, you know, you can't support the soul. [silence] You have to prove that one to me. | ||
| My family and friends | Discussion of relationships with family and friends, including faith community (also includes pets) | PCC: You have people who you would say are very supportive of you? |
| P: I've got a daughter and my sister-in-law, and family, and I've got a lot of good friends… | ||
| Worries about loved onesa | Discussion of challenges and concerns with relationships in the setting of serious illness; often, includes participants worrying about their loved ones after they die; can include fear of being a burden | P: I just didn't want my family to suffer. I have a good family, and they've already suffered for so long… |
| With me versus by myselfa | Reflections on feeling connectedness versus isolation in relationships, a sense of community and belonging versus feeling alone; can include elements of legacy (i.e., connection with the next generation), may also include thinking about connection with God/nature and the afterlife (i.e., connection with loved ones in the next realm) | P: …There's some things they just really can't do. I'm the one who's going through it. I'm the one that needs to deal with it. Whether it's by myself, or whether it's somebody else, it doesn't matter. |
| Looking into the future | ||
| What to expecta | Related to conversations about the future (can include assessing information preferences for discussion about prognosis), includes questioning what is to come in terms of illness trajectory and treatment (use subcodes for specific projections) | PCC: Do you know what you expect in the future? Do you know what you expect over the next few weeks or months? Do you have an idea? |
| Direct projections | Related to discussion of the likely course and outcomes of disease (can include discussion of survival, i.e., longevity or cure, or quality of life like, i.e., symptoms and function) | PCC: But one of the things that we know is once these tumors go to the brain and the spinal fluid the radiation also doesn't treat it completely…And we have no way that we know of to get rid of the disease or to cure it…And most people with this disease will typically die within a year and many it will be less than that, and that can be a range less than six months. |
| Process of dyinga | Explicit discussion of the dying trajectory in terms of bodily function and changes (e.g., what happens in the body with cessation of eating and drinking) | PCC: So sometimes as the disease is progressing even over days we have to increase that drip to keep her comfortable, and so she would, at some point, her breathing would get irregular and then stop, and that's basically what we often see is that the body's shutting down. |
| Not knowing what to expecta | Discussion related to not knowing what is going to occur in thinking about the future, includes questions of uncertainty | P: It's hit me a couple times, you know? Just sit here and just stare into space and stare at the TV, and, you know, thinking about what things might be like or what they could be. |
| Hopesa | Related to discussion of hopes and wishes for the future; can also include feelings of hopelessness (i.e., not knowing what to hope for, not having hope) | PCC: Mm hmm, mm hmm. What are you hoping to be able to do? |
| P: I really don't know…I don't really have a light at the end of the tunnel to. It seems like every time I see the light it's a freight train coming the other way. | ||
| Worriesa | Related to discussion of concerns and worries that arise when looking into the future (separate code for worries about loved ones) | P: Yeah one of the things that's progressively getting more worrisome is uh all of this medication I'm taking right. |
| How I manage looking into the futurea | Discussion of psychological responses in dealing with the future (often related to managing uncertainty); includes information preferences as this is one way individuals manage looking ahead | FM: You know, like you said, it helps to just talk too because it's like, you know, yeah, yeah, it's going to get better. It's going to get better, but you know it's not kind of, and you're hoping it is, but you have to hear what's the next step. You have to hear what's the next step. |
| Timea | Discussion of time and timing in different ways; includes individuals situating themselves on a medical and existential timeline, which often involves discussion of having a shorter time and what they may go through for more time | P: So, I've lost all this time. |
| Strong emotions | Relates to when strong emotions are expressed (i.e., sadness/crying), including emotions that arise when talking explicitly about death and dying, as well as reflections that this is hard to talk about | FM: It's hard to think about, yeah… |
| P: I don't know [crying]. | ||
a
Denotes a code which may contain discussion of existential experience