Abstract
Background: Communication about prognosis is a key ingredient of effective palliative care. When patients with advanced cancer develop increased prognostic understanding, there is potential for existential distress to occur. However, the existential dimensions of prognosis communication are underexplored.
Objective: To describe the existential dimensions of prognosis communication in naturally-occurring palliative care conversations.
Methods: This study was an explanatory sequential mixed methods design. We analyzed a random subset of patients from the Palliative Care Communication Research Initiative (PCCRI) parent study (n = 34, contributing to 45 palliative care conversations). Data were based on audio-recorded and transcribed inpatient palliative care conversations between adults with advanced cancer, their families, and palliative care clinicians. We stratified the study sample by levels of prognosis communication, and qualitatively examined patterns of existential communication, comparing the intensity, frequency, and content, within and across levels.
Results: Existential communication was more common, and of stronger intensity, within conversations with higher levels of prognosis communication. Conversations with more prognosis communication appeared to exhibit a shift toward the existential and away from the more physical nature of the serious illness experience.
Conclusion: Existential and prognosis communication are intimately linked within palliative care conversations. Results highlight the multiplicity and mutuality of concerns that arise when contemplating mortality, drawing attention to areas of palliative care communication that warrant future research.
Keywords: advanced cancer, communication, existential, palliative care, prognosis
Introduction
Recent evidence suggests that communication about prognosis—the process of addressing “what to expect” for an individual's disease course—is a salient component of effective palliative care.1–3 By enabling meaningful decision making and end-of-life planning in the setting of advanced illness,4–7 prognosis communication appears to be an important mechanism through which palliative care impacts preference-concordant treatment at the end of life.8,9 However, willingness to discuss prognosis (specifically related to life expectancy) has been associated with loss of meaning and purpose in terminally ill cancer patients.10 In addition, previous studies in patients with advanced cancer have reported a relationship between increased prognostic understanding and greater existential distress.11,12 Given this link, and the importance of prognosis communication in palliative care, a better empirical understanding of how these dimensions of conversation interrelate is warranted.
Existential experience can be understood as a moment or situation, in which an individual confronts the boundaries of life, encountering the fragility of existence, and must renegotiate their fundamental understanding of the self, life, and death.13 Qualitative research investigating the intersection between existential experience and prognosis communication has been primarily interview-based, asking individuals to reflect back on serious illness conversations.14,15 This research suggests that overemphasizing the instrumental aspects of serious illness conversations, while ignoring the inescapable existential dimensions (i.e., talking about the fact of death without addressing the process of dying), may limit the potential meaningful impact these conversations can have.15 Yet, little observational research has been conducted to examine how these features of palliative care conversations are voiced and intersect in the natural clinical setting.
We aimed, therefore, to describe the existential dimensions of prognosis communication in naturally occurring palliative care conversations with adults with advanced cancer. Ultimately, understanding existing patterns of palliative care communication is critical to establish “best practices” for conversations related to prognosis in the setting of serious illness and to achieve the full benefits of palliative care.
Methods
We used an explanatory sequential mixed methods approach16,17 to analyze palliative care consultation transcripts from the Palliative Care Communication Research Initiative (PCCRI) parent study.18 An explanatory sequential mixed methods design involves using qualitative data to explain or expand upon quantitative findings.16,17 For the present study, we formed groups based on quantitative results and used these groups to guide sampling and analysis of qualitative data.19 Specifically, we used quantified data on frequency of prognosis expressions (i.e., none, low, and high levels) from the parent PCCRI study to guide our qualitative analysis of palliative care conversations, exploring whether and how existential communication differed within and across levels of prognosis strata.
As described more fully elsewhere,18 the PCCRI occurred at the University of Rochester Medical Center and the University of California San Francisco Medical Center (January 2014 to May 2016). Patient eligibility criteria included primary life-limiting illness of metastatic cancer; English-speaking; older than 21 years; not having a documented exclusively comfort-oriented plan of care at the time of referral; and able to consent for research either directly or via health care proxy. Patient proxies were eligible if they were older than 21 years of age and English-speaking. All members of the interprofessional palliative care teams at both sites were eligible to participate. All participants (patients or proxies) signed written informed consent. Patients' family members or close friends who were present during the palliative care consultation provided verbal consent for the audio recording. No survey data were collected on patients' family members or close friends, unless they were the consented health care proxy for patients who lacked such capacity. In total, the PCCRI sample included 54 palliative clinicians and 231 patient or proxy participants contributing to a total of 363 recorded conversations. All conversations included palliative care clinicians, as well as patients and/or patients' family members or close friends (which may have included a health care proxy). We use the term “family” to include family, close friends, and health care proxies.
The initial consent for the parent PCCRI study allowed for subsequent analyses of the recorded conversations among the study team for research purposes; the current analysis of existing PCCRI data thus aligns with the aims of the parent PCCRI study and the original consent obtained. The Institutional Review Board at the University of Pennsylvania and the University of Vermont approved this analysis as exempt.
Data and measures
We analyzed transcripts of audio-recorded palliative care conversations and sociodemographic- and illness-related data acquired via self-report and the electronic health record from the parent PCCRI study. We also used the direct observation checklists (standardized lists to record environmental and conversational factors) and field notes (qualitative descriptions of any barriers to patient participation and impressions of key nonverbal interactions), completed by research observers in the parent PCCRI study, to help contextualize the palliative care conversations.
Prognosis communication strata
Prognosis communication was defined as any predictive statement about a future health-related event or status.9 We created three strata of prognosis communication in the PCCRI sample based on the distribution of expressions of prognosis as identified by multiple trained human coders in previous PCCRI work (None: 0 prognosis expressions; Low: 1–3 prognosis expressions; High: ≥4 prognosis expressions).20
Existential communication
Following the Conceptual Model of Existential Experience in Adults with Advanced cancer,13 we defined existential communication as any discussion concerned with confronting mortality and the fragility of existence; in particular, relating to major themes of (1) time as a pressing boundary; (2) maintaining a coherent self; and (3) connecting with others.21 In our previous work, we identified 11 typical topics of existential communication in conversations stemming from the PCCRI study (Appendix Table A1).21 We used this previously developed codebook as an a priori coding scheme in the present study through the method of directed content analysis,22–24 while still being open to emergent codes (see Analytic Approach section).
Sampling
For the present study, we built on our previous work21 where we analyzed a random subsample of conversations from the parent PCCRI study.18 The initial sample size for the current study was informed by similar qualitative investigations of existential experience in adults with advanced cancer.25,26 We then stratified this random sample based on tertiles of prognosis communication (i.e., Prognosis Communication Strata). Subsequently, we purposefully sampled additional conversations within each strata to have a meaningful sample for subanalysis within and across strata (i.e., at least 10 participants per strata).19 We continued sampling until meaning saturation27 was achieved within each level of prognosis communication,28 seeking a richly textured understanding of the dimensions of existential communication within each strata.
Analytic approach
We used within- and across-case analytic strategies to explore patterns of existential communication, comparing the intensity, frequency, and content, within and across conversations with none, low, and high levels of prognosis communication.29 Within-conversations, we used a qualitative descriptive approach30,31 paired with directed content analysis.22–24 We considered the unit of analysis to be the conversation rather than the individual speaker, meaning we analyzed the contributions of patients, families, and clinicians to the dialog. We then categorized conversations according to intensity of expressions (mild, moderate, strong) related to existential experience.32 Conversations were considered to have mild existential content if they had only few or passing expressions of existential experience, whereas conversations were considered to have strong existential content if they included many or strong expressions related to existential experience. Within- and across-levels of prognosis communication, we examined similarities and differences according to the intensity of existential communication and the content and frequency of codes. We used standard descriptive statistics to characterize our analytic sample. Given our small sample, we used nonparametric statistical tests to evaluate whether patient-level characteristics differed by prognosis communication level.
To maintain rigor, and bolster the trustworthiness of study findings,33,34 we engaged in the following strategies: (1) provided detailed descriptions of the context of original data collection, as well as selection and characteristics of study participants; (2) reviewed multiple data sources to provide a richer understanding of the phenomenon of interest (including direct observation checklists, field notes, and transcribed interviews); (3) kept analytic memos during the coding process creating an audit trail for review with the research team; and (4) the first author trained a research assistant to code the conversations and both analysts independently coded ∼20% of the conversation transcripts, meeting to discuss discrepancies, clarify the codebook, and reach consensus in the interpretation of existential communication.35,36
Results
The sample included 34 participants contributing to 45 palliative care conversations; patients participated in all but 3 conversations. Over half of patient participants identified as female (62%), two-thirds were younger than 70 years, the majority of participants identified as white (82%), and half of participants reported some financial insecurity (Table 1). There were no prominent differences in patient-level characteristics by prognosis communication level, including on measures of disease severity (i.e., Palliative Performance Scale [PPS] and time to death). Overall, our analyses of whether and how existential communication differed within and across conversations with none, low, and high levels of prognosis communication revealed two primary findings, detailed below.
Table 1.
Characteristics of Patient Participants by Prognosis Level (N = 34)
| Level |
p | |||
|---|---|---|---|---|
| None (n = 10) | Low (n = 14) | High (n = 10) | ||
| Age in years, median (range) | 59.9 (36.3–72.5) | 70.6 (37.9–86.3) | 67.5 (40.4–83.0) | 0.19 |
| Gender, n (%) | 0.44 | |||
| Female | 5 (50) | 8 (57) | 8 (80) | |
| Race, n (%) | 1 | |||
| Black/African American | 1 (10) | 1 (7) | 0 (0) | |
| White | 8 (80) | 11 (79) | 9 (90) | |
| Other | 1 (10) | 2 (14) | 1 (10) | |
| Hispanic or Latino ethnicity, n (%) | 0.77 | |||
| Yes | 1 (10) | 2 (14) | 0 (0) | |
| Highest education, n (%) | 0.96 | |||
| ≥Bachelors | 2 (20) | 4 (29) | 2 (20) | |
| High school/some college | 7 (70) | 8 (57) | 7 (70) | |
| ≤High school | 1 (10) | 2 (14) | 1 (10) | |
| Financial security, n (%) | 0.15 | |||
| Secure | 2 (20) | 8 (62) | 6 (60) | |
| Partially secure | 7 (70) | 5 (38) | 4 (40) | |
| Insecure | 1 (10) | 0 (0) | 0 (0) | |
| Cancer type, n (%) | 0.55 | |||
| Lung | 3 (30) | 1 (7) | 1 (10) | |
| Gastrointestinal (non-CRC) | 0 (0) | 3 (21) | 1 (10) | |
| CRC/breast/prostate | 3 (30) | 5 (36) | 2 (20) | |
| Other | 4 (40) | 5 (36) | 6 (60) | |
| Palliative Performance Scale, median (range) | 5.5 (3–9) | 4.5 (1–8) | 4.5 (1–8) | 0.29 |
| Clinicians' estimate of survival time, n (%) | 0.53 | |||
| <2 Weeks | 0 (0) | 3 (21) | 2 (20) | |
| 2 Weeks to <3 months | 4 (40) | 3 (21) | 4 (40) | |
| ≥3 Months | 6 (60) | 8 (57) | 4 (40) | |
| Days from enrollment to death, median (range) | 27.5 (2–125) | 12 (0–142) | 31.5 (1–157) | 0.44 |
For statistical significance testing purposes, we used Fisher's exact test for categorical data and Kruskal–Wallis test for continuous data.
CRC, colorectal cancer.
More prognosis communication, more (and deeper) existential communication
First, we found that existential communication was more common, and more in-depth, within conversations with higher levels of prognosis communication. This was apparent through examining the distribution of the intensity of existential communication (Table 2) and existentially relevant codes (Table 3) by prognosis communication level.
Table 2.
Intensity of Expressions Related to Existential Experience by Prognosis Level
| Level |
|||
|---|---|---|---|
| None (n = 10) | Low (n = 14) | High (n = 10) | |
| Mild | 8 | 6 | 0 |
| Moderate | 1 | 4 | 5 |
| Strong | 1 | 4 | 5 |
Conversations were considered to have mild existential content if they had few expressions or only passing expressions of existential experience, whereas conversations were considered to have strong existential content if they included many expressions or strong expressions related to existential experience.
Table 3.
Top 10 Codes by Levels of Prognosis Communication
| |
Level |
||
|---|---|---|---|
| None (n = 10) | Low (n = 14) | High (n = 10) | |
| 1 | Exploring options | Connecting with care providers | Timea |
| 2 | How are you feeling | Exploring options | Exploring options |
| 3 | Helping that feeling | Timea | Connecting with care providers |
| 4 | Connecting with care providers | How are you feeling | How are you feeling |
| 5 | Not knowing what to expecta | What matters mosta | With me versus by myselfa |
| 6 | Timea | Helping that feeling | Connectedness and support |
| 7 | Disconnected from care providers | Not knowing what to expecta | What matters mosta |
| 8 | Where things are right now | What to expecta | What to expecta |
| 9 | What matters mosta | Worth and wastea | Helping that feeling |
| 10 | How things have been | With me versus by myselfa | What I want and don't want |
This table represents the 10 codes which occurred most frequently within conversations grouped by prognosis communication level.
Denotes codes that contained existential expressions.
As Table 2 depicts, we found that the majority of conversations with no prognosis communication had mild existential communication, whereas all of the conversations in the high prognosis communication strata contained moderate or strong existential communication. Conversations with no prognosis communication contained few or passing expressions related to existential experience. For example, in one of these conversations, a discussion of being “tired” of all the “treatment stuff” led a family member (FM) and a 57-year-old female patient (P) to share existential reflections on being “done”:
FM: Yeah, it's too much.
P: Done. Had my lung drained twice. I've had a lung biopsy. Had all my teeth pulled.
FM: Yeah.
P: Had the radiation.
FM: Yeah.
P: There's nothing left.
FM: It's just too much.
P: It's too much.
FM: Just too much.
P: Can't do it anymore. Every time they lift me from this bed it hurts so bad, I just can't do it. I can't.
This passing comment, that the patient feels she “can't do it anymore,” gave a sense that she was struggling with her current state of existence. Yet, the conversation did not linger on the existential; instead, pain and how to achieve relief became the focus of discussion. In contrast, in the high prognosis communication strata, conversations had more, and deeper, expressions related to existential experience. For instance, in one of these conversations, in answer to the palliative care clinician's (PCC) query of, “How are you feeling today?” a 70-year-old male patient replied:
P: Pretty bad.
PCC: Pretty bad? What's bothering you most?
P: I'm dying.
This conversation then centered on what it felt like to be dying, and how the patient was making sense of his reality, feeling both “blessed” and “cheated.” The patient went on to explain, “And you say well, you shouldn't feel cheated because you had a lot of good times. Well, I feel cheated because I had a lot more planned out.” As this excerpt illustrates, conversations categorized as having strong existential communication were often sustained in their focus on the existential in contrast to conversations with no prognosis communication.
The distribution of existentially relevant codes across prognosis communication strata further demonstrates that existential communication was more common within conversations with higher levels of prognosis communication (Table 3). Across all three strata, rapport-building was prevalent (code: “connecting with care providers”). However, in conversations with higher levels of prognosis communication, existential topics featured more prominently, relating to concepts of time, “what matters most,” and seeking connection while struggling with feelings of being ultimately alone (corresponding codes: “time,” “what matters most,” and “with me versus by myself”). Conversely, in conversations containing no prognosis communication, much of the dialog focused on symptom assessment, symptom management, and navigating potential treatments (codes: “how are you feeling,” “helping that feeling,” and “exploring options”, respectively).
Existential versus physical focus
Second, we observed a shift in focus in conversations with higher levels of prognosis communication toward existential content and away from more physical focus of the patient's experience. This was apparent in the ways that participants discussed concepts of time, not knowing what to expect, and “what matters most.”
Time
Conversation regarding time was an ever-present feature in palliative care conversations. Patients and families reflected on the “good times” and “hard times” in their lives, questioned “how much time” they had, and wondered if it was the “right time” to transition to hospice. However, discussion of “time” was much more prominent in conversations with higher levels of prognosis communication (Table 3). In addition, as Table 4 reveals, the way individuals discussed time shifted in focus. “Time” captured discussion of medical time, related to the timing of hospital admissions, tests, and treatments, as well as how individuals described their existential time, a more personal timeline encompassing their past, present, and future experience with illness. As Table 4 illustrates, discussion of time was more medical in focus in conversations with no prognosis communication (e.g., time in relationship to treatments), while conversations with more prognosis communication emphasized existential time to a greater degree (e.g., time in relationship to existence, when it is “her time”).
Table 4.
Illustrative Quotes for Codes by Prognosis Level
| Level |
|||
|---|---|---|---|
| None (n = 10) | Low (n = 14) | High (n = 10) | |
| Time |
P: The only thing with the chemo is I remember how nauseated I was. So I'm saying, you know what, I'm taking it one day at a time. (62-year-old male) |
P: Frankly my quality of life right now is not good…So it's like uh if I knew that that stopping treatment would give me a better quality of life for a shorter period of time… PCC: Mm hmm. P: …I might opt for that but it's sort of like the better quality of life. Uh it just seems like everything is going wrong. (71-year-old female) |
FM1: I don't think anything that we can do would extend her life? PCC: No, no this is, this is her time and this is the disease process. And the point of fact compared to 99% of the people with her disease, she has outlived her prognosis about 10 times. FM2: We're very blessed in the fact the additional time we had, she saw my oldest get getting married. And she saw all of her grandchildren graduate from high school, so I mean, we wouldn't have had those times otherwise. So, you know, so we can't be greedy. I mean, we can, but we shouldn't be. FM1: Very difficult to watch because you'd rather take her place, instead of her suffering there. But um, (clears throat) but it's not to be, and, and so we accept it and, and we try to go on till we see each other again, so. (family members of a 69-year-old female) |
| Not knowing what to expect |
FM: …I kind of get the idea they're not really sure what they're up against. P: Yeah, exactly. FM: Because we haven't really heard from anyone other than echoing the words stage 4 with the metastases through the body and a couple of the big tumors. Aside from that, what is that going to take him through as far as pain, psychological? We have no idea. We're coasting. PCC: Still waiting for responses. FM: We're waiting for that stuff, you know. The odds against fighting it versus not. The odds with chemo and radiation versus not. We have absolutely no idea… (51-year-old male) |
P: But again, I knew what was to expect, I was told this, prepare, do what I'm supposed to do. PCC: Yeah. P: You know I had the. PCC: I mean we can manage a lot if we have a sense of what it is and what we need to be. P: Right, that's what I'm saying. PCC: Prepared for. P: And I asked. PCC: And how we organize ourselves. P: Yeah, and I act appropriately. But let's just take. PCC Yeah. P: The blinders off or the facet off—whatever we want to look at it but a glass is—because this is not—we don't know where this is going to end. (57-year-old female) |
P: And I think to myself if we let this go and there isn't another surgery and we let it go how long is it going to grow inside me? How long am I going to survive? Where's it going to end? PCC: Right. P: How am I going to die with this? PCC: Those are some uncertainties for sure. P: Yeah, it's frightening. (65-year-old female) |
| What matters most |
PCC: …What I'm getting from reading your chart and seeing you is that pain is the number one important thing right now. Would you agree or disagree? P: Yes, it's hurting. Very much. It's swelling. My neck hurts awful. (62-year-old female) |
P: I wanna kinda get out of here so I could straighten out a few things in my life… PCC: Mm hmm. P: …and uh I don't wanna leave a lot of problems for my wife. PCC: Loose ends. P: Loose ends. PCC: So your hope is to get back to both. P: Yup. PCC: That's very important to you. (77-year-old male) |
PCC: You know, this is the time for you guys to be together. And to be together and to bring home to her to do what's important to her. FM: I think speaking for her, what she'd like to do is kind of say good-bye to her friends during the time she has left. She can do that in a comfortable setting. (family member of a 56-year-old female) |
Not knowing what to expect
In trying to figure out where they were in the course of their disease trajectory, and the timeline of their lives, participants expressed great uncertainty. “You never know,” “I have no way of knowing,” and “we will see how it goes,” were ubiquitous sentiments throughout conversations. While attempting to navigate this uncertainty together, clinicians expressed wishing that they “had this crystal ball working,” and patients and families articulated knowing that, unfortunately, “nobody has a crystal ball.” Yet, discussions of uncertainty related to different dimensions of not knowing across prognosis communication strata, revealing an existential shift in the focus of conversations with higher levels of prognosis communication (Table 4). In conversations with no discussion of prognosis, conversation related to prognostic uncertainty, feelings of uncertainty about daily life (e.g., when certain tests would take place), and symptom management (e.g., how much pain medication they would need). In conversations with higher levels of prognosis communication, the scope of uncertainty broadened from disease and symptom focused to include contemplation of existential uncertainty. These reflections ranged from not knowing whether or not they would survive, to wondering whether they would have time to achieve certain personal goals (like graduations and weddings of children and grandchildren), and ultimately, to questioning what dying would look like (e.g., “How am I going to die with this?”).
What matters most
Throughout palliative care conversations, patients, families, and clinicians discussed what is “most important” at this point. These goals, priorities, or “bucket list” items hinted at how a person defined their purpose and found meaning. Identifying “what matters most” also shaped the discussion of treatment preferences, given where a person was within their disease trajectory and their life. However, in conversations with no prognosis communication, discussion of “what matters most” happened less frequently than in conversations with higher levels of prognosis communication. In addition, as Table 4 shows, what was emphasized as most important shifted. Symptom management, and pain management specifically, was often identified as “what matters most” in conversations with no prognosis communication. This aligned with our findings that these conversations discussed symptom assessment and relief more frequently (Table 3). In conversations with higher levels of prognosis communication, “what matters most” was often more existential in nature (e.g., saying goodbye).
Discussion
This study adds to our understanding of the existential dimensions of prognosis communication in palliative care conversations with individuals with advanced cancer, their families, and palliative care clinicians. The findings build upon the existing literature on the relationship between prognosis communication and existential experience by highlighting key differences in palliative care conversations according to how frequently prognosis was discussed. Most notably, we found that conversations with more discussion of prognosis also contained more discussion of existential topics. This represented an existential shift in focus, from an emphasis on symptom management, and pain management specifically, in conversations with no prognosis communication to an emphasis on time and “what matters most” in conversations with more prognosis communication. These findings generate new directions for research and prompt immediate considerations for how we talk about prognosis in clinical practice.
Our work builds upon existing research investigating the relationship between prognosis communication and existential experience in two prominent ways. First, existing literature has reported a relationship between preference to discuss prognosis and awareness of prognosis with greater existential distress.10–12 While our findings revealed that in palliative care conversation with more prognosis communication, patients, families, and clinicians covered more and deeper existential ground, this did not necessarily represent greater existential distress. In fact, many patients and families described sources of joy, meaning, and peace in conversations with more prognosis communication. Second, our findings add evidence from the natural clinical setting to support Terror Management Theory (TMT).37 TMT, derived from the work of Becker,38 asserts that awareness of death (mortality salience) can provoke intense existential anxiety that individuals manage by embracing cultural worldviews. Our findings highlight that conversations related to prognosis may be recognized as mortality salience triggers, potentially prompting existential anxiety.15,37 This is important for clinicians to recognize when talking about prognosis, as navigating intense existential concerns, such as fear of dying, may make it challenging for patients and families to consider new information and reason effectively.39
We also found that palliative care conversations with no discussion of prognosis contained a greater emphasis on symptom management, specifically pain. This finding aligns with previous work that pain relief is an important priority for individuals with cancer.40 Given that pain affects more than two-thirds of patients with advanced cancer,41 and approximately one-third of patients with cancer pain receive inadequate relief,42 a focus on pain in palliative care conversations is unsurprising. Still, our findings add nuance to previous work. Our findings suggest that not only is physical symptom burden a pressing issue for individuals with advanced cancer in palliative care conversations, but it may need to be addressed before prognosis- or existential-related concerns can be considered.
There are several limitations of this research, which future investigations should seek to address. Our sample was an English-speaking, predominantly white group of patients receiving palliative care at two institutions, which may limit the transferability of findings to other institutions, specialties, or cultural contexts. Furthermore, we chose to stratify the sample into levels of prognosis communication based on frequency of communication and explore existential communication within and across levels. Future work taking into consideration depth of prognosis communication may be worthwhile. Finally, given the complex, interactional nature of palliative care conversations, we took an ecological approach to analysis and considered the conversation as the unit of analysis. Future research explicitly focusing on how clinicians respond to existential expressions32 or patterns of interaction43 may help to elucidate how these factors influence the arc of conversation.
Conclusion
Taken together, our findings add to the growing body of evidence highlighting prognosis communication as a key feature underlying the beneficial effects of palliative care1–3,8,9 by uncovering the salient existential dimensions of these conversations. This study supports the assertion that “planning [for the future] isn't just a practical task; it is an existential one.”44 It is our hope that this study draws attention to the multiplicity and mutuality of concerns that arise when contemplating mortality and generates hypotheses for future study to advance the development of personalized communication strategies in palliative care.
Acknowledgments
The authors are grateful to the patients, family members, and palliative care clinicians who took part in the PCCRI study for their dedication to research devoted to enhancing the care of people with serious illness.
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]. | ||
Denotes a code which may contain discussion of existential experience
Authors' Contributions
Conception and design: all authors. Collection and assembly of data: R.G. Data analysis and interpretation: all authors. Article writing: all authors. Final approval of article: all authors.
Funding Information
This work was, in part, supported by the National Institutes of Health (NewCourtland Center for Transitions and Health institutional NIH/NINR T32NR009356 to E.C.T. and F31 Ruth L. Kirschstein NRSA F31NR018104 to E.G.B.), Sigma/Hospice and Palliative Nurses Foundation (End-of-Life Nursing Care Research Grant to E.C.T.), Rita and Alex Hillman Foundation (Hillman Scholars Program to E.G.B.), and American Cancer Society (Research Scholar Grant RSG PCSM124655 to R.G. to fund the PCCRI). The funding sources were not involved in study design, collection, analysis or interpretation of data, or writing of the report.
Author Disclosure Statement
No competing financial interests exist.
References
- 1. Norton SA, Metzger M, DeLuca J, et al. : Palliative care communication: Linking patients' prognoses, values, and goals of care. Res Nurs Health 2013;36:582–590. [DOI] [PubMed] [Google Scholar]
- 2. Thomas TH, Jackson VA, Carlson H, et al. : Communication differences between oncologists and palliative care clinicians: A qualitative analysis of early, integrated palliative care in patients with advanced cancer. J Palliat Med 2019;22:41–49. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3. Gramling R, Norton SA, Ladwig S, et al. : Direct observation of prognosis communication in palliative care: A descriptive study. J Pain Symptom Manage 2013;45:202–212. [DOI] [PubMed] [Google Scholar]
- 4. Glare PA, Sinclair CT: Palliative medicine review: Prognostication. J Palliat Med 2008;11:84–103. [DOI] [PubMed] [Google Scholar]
- 5. Norton SA, Bowers BJ: Working toward consensus: Providers' strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 2001;24:258–269. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6. Steinhauser KE, Christakis NA, Clipp EC, et al. : Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476–2482. [DOI] [PubMed] [Google Scholar]
- 7. Krawczyk M, Gallagher R: Communicating prognostic uncertainty in potential end-of-life contexts: Experiences of family members. BMC Palliat Care 2016;15:59. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8. Gramling R, Ingersoll LT, Anderson W, et al. : End-of-life preferences, length-of-life conversations, and hospice enrollment in palliative care: A direct observation cohort study among people with advanced cancer. J Palliat Med 2019;22:152–156. [DOI] [PubMed] [Google Scholar]
- 9. Gramling R, Stanek S, Han PK, et al. : Distress due to prognostic uncertainty in palliative care: Frequency, distribution, and outcomes among hospitalized patients with advanced cancer. J Palliat Med 2018;21:315–321. [DOI] [PubMed] [Google Scholar]
- 10. Vehling S, Kamphausen A, Oechsle K, et al. : The preference to discuss expected survival is associated with loss of meaning and purpose in terminally ill cancer patients. J Palliat Med 2015;18:970–976. [DOI] [PubMed] [Google Scholar]
- 11. Tang ST, Chang WC, Chen JS, et al. : Associations of prognostic awareness/acceptance with psychological distress, existential suffering, and quality of life in terminally ill cancer patients' last year of life. Psychooncology 2016;25:455–462. [DOI] [PubMed] [Google Scholar]
- 12. Saracino RM, Polacek LC, Applebaum AJ, et al. : Health information preferences and curability beliefs among patients with advanced cancer. J Pain Symptom Manage 2021;61:121–127. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13. Tarbi EC, Meghani SH: Existential experience in adults with advanced cancer: A v. Nursing Outlook 2019;67:540–557. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14. Friedrichsen M, Lindholm A, Milberg A: Experiences of truth disclosure in terminally ill cancer patients in palliative home care. Palliat Support Care 2011;9:173–180. [DOI] [PubMed] [Google Scholar]
- 15. Schulz VM, Crombeen AM, Marshall D, et al. : Beyond simple planning: Existential dimensions of conversations with patients at risk of dying from heart failure. J Pain Symptom Manage 2017;54:637–644. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16. Creswell JW, Plano Clark VL: Designing and Conducting Mixed Methods Research, 3rd ed. Thousand Oaks: Sage Publications, 2018. [Google Scholar]
- 17. Tashakkori A, Teddlie C: Sage Handbook of Mixed Methods in Social & Behavioral Research, 2nd ed. Thousand Oaks: Sage Publications, 2010. [Google Scholar]
- 18. Gramling R, Gajary-Coots E, Stanek S, et al. : Design of, and enrollment in, the palliative care communication research initiative: A direct-observation cohort study. BMC Palliat Care 2015;14:40. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19. Sandelowski M: Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Res Nurs Health 2000;23:246–255. [DOI] [PubMed] [Google Scholar]
- 20. Ingersoll LT, Alexander SC, Priest J, et al. : Racial/ethnic differences in prognosis communication during initial inpatient palliative care consultations among people with advanced cancer. Patient Educ Couns 2019;102:1098–1103. [DOI] [PubMed] [Google Scholar]
- 21. Tarbi EC: Beyond Prognosis Communication: Exploring the Existential Dimensions of Palliative Care Conversations with Adults with Advanced Cancer. Philadelphia, PA: ProQuest Dissertations Publishing, University of Pennsylvania, 2020. [Google Scholar]
- 22. Hsieh HF, Shannon SE: Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–1288. [DOI] [PubMed] [Google Scholar]
- 23. Vaismoradi M, Turunen H, Bondas T: Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci 2013;15:398–405. [DOI] [PubMed] [Google Scholar]
- 24. Elo S, Kyngas H: The qualitative content analysis process. J Adv Nurs 2008;62:107–115. [DOI] [PubMed] [Google Scholar]
- 25. Lovgren M, Hamberg K, Tishelman C: Clock time and embodied time experienced by patients with inoperable lung cancer. Cancer Nurs 2010;33:55–63. [DOI] [PubMed] [Google Scholar]
- 26. Moestrup L, Hansen HP: Existential concerns about death: A qualitative study of dying patients in a Danish hospice. Am J Hosp Palliat Care 2015;32:427–436. [DOI] [PubMed] [Google Scholar]
- 27. Hennink MM, Kaiser BN, Weber MB: What influences saturation? Estimating sample sizes in focus group research. Qual Health Res 2019;29:1483–1496. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28. Sandelowski M: Qualitative analysis: What it is and how to begin. Res Nurs Health 1995;18:371–375. [DOI] [PubMed] [Google Scholar]
- 29. Ayres L, Kavanaugh K, Knafl KA: Within-case and across-case approaches to qualitative data analysis. Qual Health Res 2003;13:871–883. [DOI] [PubMed] [Google Scholar]
- 30. Sandelowski M: What's in a name? Qualitative description revisited. Res Nurs Health 2010;33:77–84. [DOI] [PubMed] [Google Scholar]
- 31. Sandelowski M: Whatever happened to qualitative description? Res Nurs Health 2000;23:334–340. [DOI] [PubMed] [Google Scholar]
- 32. Alexander SC, Ladwig S, Norton SA, et al. : Emotional distress and compassionate responses in palliative care decision-making consultations. J Palliat Med 2014;17:579–584. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33. Lincoln YS, Guba EG: Naturalistic Inquiry. Newbury Park, CA: Sage, 1985. [Google Scholar]
- 34. Graneheim UH, Lundman B: Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004;24:105–112. [DOI] [PubMed] [Google Scholar]
- 35. Elo S, Kääriäinen M, Kanste O, et al. :. Qualitative Content Analysis. SAGE Open, Vol. 4, 2014. DOI: 10.1177/2158244014522633. [DOI] [Google Scholar]
- 36. Ravitch SM, Carl NM: Qualitative Research: Bridging the Conceptual, Theoretical, and Methodological. Los Angeles, CA: SAGE Publications, 2019. [Google Scholar]
- 37. Solomon S, Greenberg J, Pyszczynski TA: The Worm at the Core: On the Role of Death in Life. New York, NY: Random House Incorporated, 2015. [Google Scholar]
- 38. Becker E: The Denial of Death. New York: Free Press, 1973. [Google Scholar]
- 39. Yalom ID: Staring at the Sun: Overcoming the Terror of Death. San Francisco, CA: Jossey-Bass, 2008. [Google Scholar]
- 40. Meghani SH, Wool J, Davis J, et al. : When patients take charge of opioids: Self-management concerns and practices among cancer outpatients in the context of opioid crisis. J Pain Symptom Manage 2020;59:618–625. [DOI] [PubMed] [Google Scholar]
- 41. van den Beuken-van Everdingen MH, Hochstenbach LM, Joosten EA, et al. : Update on prevalence of pain in patients with cancer: systematic review and meta-analysis. J Pain Symptom Manage 2016;51:1070–1090 e9. [DOI] [PubMed] [Google Scholar]
- 42. Greco MT, Roberto A, Corli O, et al. : Quality of cancer pain management: An update of a systematic review of undertreatment of patients with cancer. J Clin Oncol 2014;32:4149–4154. [DOI] [PubMed] [Google Scholar]
- 43. Liden E, Ohlen J, Hyden LC, et al. : Ways of talking about illness and prognosis in palliative cancer care consultations—Two interactional frames. Support Care Cancer 2010;18:399–408. [DOI] [PubMed] [Google Scholar]
- 44. deLima Thomas J: Pandemic as teacher—Forcing clinicians to inhabit the experience of serious illness. N Engl J Med 2020;383:306–307. [DOI] [PubMed] [Google Scholar]