Cancer caregivers’ prognostic and end-of-life communication needs and experiences and their impact

Abstract

Context:

Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers’ communication experiences or the impact of these experiences on patients and caregivers at EOL.

Objectives:

Investigate cancer caregivers’ communication experiences and potential impact on patient and caregiver outcomes.

Methods:

Semi-structured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes.

Results:

Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating—often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers’ discordant communication needs from the patient, limited opportunity to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers’ abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement.

Conclusions:

Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients’ communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.

Introduction

Family cancer caregivers are integral to health communications across the cancer care continuum. Cancer caregivers often facilitate communication with care teams, help patients collect and process information, advocate for patients’ needs and assist in medical decision-making (1-3). For advanced cancer patients, caregivers are particularly important to prognostic and end-of-life (EOL) communications, which are deeply personal, complex, and vital to quality EOL care (4-7). Caregivers can help patients process prognostic information, provide emotional support (8, 9), and often make EOL decisions together with their loved one. Caregivers’ involvement in these discussions are especially important since they may act as surrogate decision-makers if patients lose decisional capacity (10-12) and because caregivers are also primarily responsible for enacting EOL wishes as they provide much of the EOL care – particularly when patients receive hospice services at home (10, 13).

While a growing literature on cancer caregiving explores elements of the caregiver communication experience, the focus on communication has often been narrow or tangential to studies’ aims, leaving an incomplete and piecemeal understanding of this critical topic(14). For instance, studies investigating decision-making and care transitions have found that caregivers’ open communication and information gathering are one of several factors linked to smoother decisions and transitions(4, 15-17). Research explicitly devoted to caregiver communication answers delimited questions, focusing on specific communication partners (e.g., patient-caregiver), tasks (e.g., timing of prognostic disclosure), or decisions (e.g., advance care plans)(18-20). Work is therefore needed to develop a more comprehensive and end-to-end understanding of caregivers’ involvement in, challenges with, and preferences for health communications, and the potential impact for patients and caregivers themselves. Consequently, this study develops a framework that outlines who cancer caregivers communicate with, what they communicate, and how, along with the challenges that caregivers face while navigating a loved one’s final months of life.

Materials & Methods

Study setting and recruitment

We recruited English-speaking, adult family caregivers of patients treated at Dana-Farber Cancer Institute (DFCI) who died of an advanced solid malignancy within the preceding 2 years, excluding the first 4 months of bereavement to avoid acute grief. DFCI is a large, academic cancer center in Boston, Massachusetts. A study team member identified eligible caregivers from a comprehensive list maintained by DFCI’s bereavement program, mailed study information and an opt-out card, and phoned caregivers who did not opt-out. Interested caregivers signed written informed consent and received a $50 gift card for participating. The Dana-Farber/Harvard Cancer Center IRB approved the study.

Semi-structured interviews

Interviews were conducted by phone or in-person during 2018 by one of three trained interviewers (AE, KF, CC). Interviews lasted approximately 30-60 minutes (average: 49 minutes), were audio-recorded, and transcribed verbatim. A medical oncologist and palliative care physician (AE), oncology social worker (KF), sociologist (AR), and patient advocate (EF) developed and iteratively refined the interview guide, which included open-ended questions and probes spanning three domains: (1) initial communications regarding the patient’s terminal prognosis, (2) communications surrounding EOL care plans and other non-medical EOL preparations, and (3) communications and experiences regarding EOL care and the immediate bereavement period.

Analysis

We analyzed transcripts using a codebook approach to thematic analysis(21), also known as template analysis, to identify and organize thematic patterns in qualitative data(22). An interdisciplinary team of a medical oncologist and palliative care physician, sociologist, research assistant, and two oncology social workers conducted thematic analysis (AE, AR, KF, NB, DK) with additional review and analysis by a sociologist (AF). Analysis entailed independent open-coding and applying prefigured codes to transcripts line-by-line using NVivo 11 software (QRS International, Melbourne, Australia). Team members met regularly to compare and resolve coding discrepancies, add new codes, and ensure consistent application of codes. The resulting codebook contained codes regarding prognostic and EOL communication including met and unmet caregiver needs, challenges, and decisions. Based on the prevalent and meaningful themes identified during open coding, AF reviewed transcripts to classify caregivers’ communication experiences and any impact on EOL planning and outcomes, and other caregiver and patient experiences. AF shared analyses bi-weekly with the team for validation.

Results

Mailers were sent to 72 eligible caregivers and 13 opted out. We reached 33 of the remaining caregivers by phone and 19 consented (participation rate, 58%). Non-participation reasons follow: 6 refused, 6 passively refused (i.e., expressed interest but stopped returning calls), and 2 expressed interest after recruitment ended.

Most participants identified as female (74%, Table 1), non-Hispanic White (100%) and were married/engaged to the patient (90%). Caregiver’s mean age was 64-years and nearly two-thirds had at least a bachelor’s degree. The median time between patient death and interview was 12 months (range, 11-18).

Table 1.

Characters of caregivers and patients' end-of-life care (N=19)

Measures	N	%
Gender
Female	14	73.7
Male	5	26.3
Age (mean, range)	64	40-82
Relationship to patient
Spouse/partner	17	89.5
Adult-child	2	10.5
Education1
High school degree / GED	2	10.5
Associate degree / Some college / Vocational school	4	21.1
Bachelor’s degree or higher	12	63.2
Race1
Non-Hispanic White	18	100
Patient’s place of death
Hospital	6	31.6
Home or other facility	13	68.4
Patient received hospice services
Yes	15	78.9
No	4	21.1

¹Some variables’ N may not sum to 19 due to missing data.

Based on analyses, we categorized caregivers’ overarching prognostic and EOL planning and care communication experiences into (Figure 1): (1) individuals/groups with whom caregivers communicated; (2) topics that caregivers discussed or wished to discuss; (3) communication roles that caregivers served; (4) communication challenges; and (5) outcomes potentially influenced by those communications. As the figure illustrates, these areas are deeply interconnected. We first describe caregivers’ communication partners, roles, and topics, and then how communication challenges can shape outcomes. All quoted names are pseudonyms.

Figure 1.

Communication partners, roles, topics, challenges, and outcomes for caregivers of late-stage cancer patients

Communication partners

Caregivers communicated with several actors and groups, including the patient, oncology team, family and friends, and other medical providers (e.g., pharmacists, social workers). This often involved coordinating complex communications across patient and multiple care team members (e.g., inpatient and outpatient providers), or with family and friends. Cross-group communications typically centered on difficult topics like prognosis or goals of care. Caregivers frequently described these interactions as challenging because they played middleman, carrying information between multiple partners who often had different agendas that the caregiver needed to navigate. For example, one caregiver could not connect her husband’s oncologist with his inpatient hospital team near EOL. The hospital providers wanted to continue treating her husband’s acute needs, despite his wish to be discharged with home hospice services. The oncologist, unable to arrange a joint EOL care discussion, eventually coached the caregiver to say to the hospitalists, “that we knew that Sam was going home to die, and that’s what he wanted to do…it was very hard.”

Communication topics

While caregivers participated (or desired involvement) in communication regarding many topics including care coordination, clinical tasks, and treatment decisions (Figure 1), most caregivers focused on topics related to prognosis and EOL planning and care, describing substantial distress and unmet communication needs. Although some acknowledged that knowing a prognosis could have been highly distressing for them or the patient, all caregivers wanted some prognostic information to help them plan.

Many caregivers described receiving little or no prognostic or EOL planning information from care teams or having these conversations too late to act upon. As caregiver 5 lamented, although his fiancee had cancer for almost a decade, they only received a prognostic estimate two weeks before she died. He stated that if someone had shared that she only had a couple years, “We could’ve done things differently. But we weren’t thinking that way….[We could have focused on our relationship]…rather than this thing consuming us and we really couldn’t get to that place.” The lack of prognostic communication continued as caregivers often interpreted care teams’ silence about EOL planning as meaning it was “not time” to have these conversations. This implicit message made it challenging for caregivers to broach EOL issues with their loved one, even though nearly all caregivers desired these conversations (Table 2). One caregiver reported that, while she suspected her husband’s case may be terminal, the oncologist only shared her husband’s prognosis (i.e., timeframe) five days before his death. When asked if she and her husband discussed or prepared for EOL, she replied, “No, because nobody gave us a timeframe.” Instead, she described frequent, long, silent car rides to treatment during which, “We didn’t talk about it [dying]. The most he would ever say is, ‘I hope this S-H-I-T works’” (Caregiver 4). The care-team’s lack of prognostic communication also impeded caregivers’ ability to prepare themselves for patients’ death or seek support (e.g., from a care-team member like a social worker).

Table 2.

Descriptive quotations of selected communication topics

Communication topic	Illustrative quote
Prognosis	Interviewer: Okay. And was that information that you wanted?
	Caregiver: That’s a very tough question, and the reason it’s tough is because you have to maintain hope and to maintain hope you can’t have a deadline by which there’s gonna be an end. So that’s a loaded question and I don’t think I can answer it. Yeah. (Caregiver 10, wife)
EOL expectations & planning	I was so very frustrated at the end because I thought maybe he could last six months. But nobody told me that he couldn’t and nobody told me that he could. And the end came so quickly…And my daughter and I were screaming at each other the day before he died. I said he’s got to be out of this house. We can’t do this anymore. It was desperate. It was horrible. It was not calm. It was not peaceful. It was horrific. We went five days of him hanging on, and nobody prepared me for that – that it could last that long and his bodily functions were still functioning, but he was not. (Caregiver 13, wife)

Many caregivers desired but received little information about what to expect at the EOL or resources to support EOL care. They felt particularly uninformed about hospice services, including when to consider them, what they entailed, and their duties as caregivers. One husband felt isolated, ill-informed, and emotionally unequipped for his wife’s EOL care, “googling” what to do. Caregivers also were not aware of the uncertain prognostic timeframe at EOL. As one caregiver explained, this was “horrific. We went five days of him hanging on, and nobody prepared me for that – that it could last that long” (Table 2, ‘EOL expectations & planning’).

Communication roles

Caregivers described fulfilling multiple communication roles, including advocating, facilitating, liaising between groups, providing emotional support, decision-making, coordinating, information sharing and gathering, and gatekeeping (Figure 1). Nearly all caregivers reported conflict and difficulty with these roles. Role-related conflict often stemmed from concerns about undermining the patients’ autonomy, uncertainty about how to support their loved one, and the emotional weight of the communication. For many, communication roles regarding treatment decision-making were particularly difficult since they required gathering and processing information while supporting or challenging their loved ones’ decision-making or advocating for their own perspective. Caregivers often felt unsure of their place in these communications. One wife described, “[I] always felt this was Sam’s illness and we needed to do it his way.” Yet, when his cancer progressed, she challenged his decision to pursue another clinical trial, but felt guilty that she “forced him” to stop treatment (Table 3, ‘Decision making’).

Table 3.

Illustrative examples of communication roles

Role	Example
Advocating	The first rehab they put him in, he lasted five minutes. He just went totally emotional…it was like, “You have to get me out of here”…I sat with the staff and I said to them, “I’m taking him home. I have taken care of him in a worse condition than this. You show me how to do the tubings and I’m going home because I was not going to have him be emotional like that. That’s crazy.” (Caregiver 9, wife)
Facilitating	He had absolutely no idea that he was dying. And so it was really hard for me to try to have those conversations because he didn’t wanna hear it – “I’m not dying.” (Caregiver 18, wife)
Liaising to other groups	He’s very close to his family, they’re wonderful people. But he never let them in as things were declining so I had to call them and say, “He’s dying,” which came as a tremendous shock to them [crying]. (Caregiver 2, wife)
Providing emotional support	Jim was not the same man. He was more quick-tempered. He was a very laid back kinda guy and he would start yelling at me. And I would say, “I understand that, and I don’t take being yelled at well, so I understand that you are going through a lot, but I am, too. I’m going through this with you.” (Caregiver 3, wife)
Decision-making	The decision for the clinical trial was his decision. I don’t know. I certainly didn’t say to him, “But, Sam, this is gonna be difficult.” Although, Dr. X said these things to him…So those decisions weren’t difficult…[F]or the second hospitalization, I did say to him, “Sam, can you withstand anything else?” I do feel there was that part that was hard for him to say – I feel, I almost forced him into that. (Caregiver 2, wife)
Coordinating	We didn’t have a ramp to get in the house. We didn’t have a hospital bed. We didn’t have 24-hour care yet… So there was a lot of stuff we needed and it took a couple weeks to get that and so he wound up in rehab and his will just went at that point. (Caregiver 10, wife)
Information gathering	Caregiver: I’m a planner. So I needed to know what I was going to be up against toward the end. I needed to give myself enough information to be strong throughout that process.
	Interviewer: So this was not something that the care team provided you with?
	Caregiver: No. No. No. Not even hospice [services]. Well, hospice I guess…But for the year, I felt like I was pretty much on my own. (Caregiver 13, wife)
Information sharing & interpretation	[I]t’d get frustrating at times because they [care tea] might be talking to her and she doesn’t understand. I could see it in her face, and if I tried to jump [in to help explain]…[care team members would say] “No, no, no. I want Sarah to speak.” And it’s like, “Yeah, but I can see in her eyes that she doesn’t know what you’re talking about.” (Caregiver 1, husband)
Gatekeeping	Physical: He did not want a farewell tour. He was not seeing anybody who was not his best friend or his family. And then people would just drop by… [I needed] to tell people gently, but firmly, “No, you can’t come and see him, he’s not seeing people”…It was [hard] managing other people’s expectations of what they thought Bob should be doing, in terms of seeing them and stuff like that. (Caregiver 11, wife) Informational: I think it would be important for at least the caregiver to get the information first and then the patient. So using my situation, I was almost afraid to have hospice [services] put in conversation with Sara from a stranger. But it would have been nice if I was communicated those options or how to go about it, which I really wasn’t, unfortunately. (Caregiver 1, husband)

Most caregivers spent substantial effort gathering care-related information from and communicating with others to manage appointments, medications, and insurance. Caregivers found these task-oriented communications time-consuming and stressful because they were often uncertain what information was needed and who could provide it. These communication duties also often felt burdensome on top of other, urgent caregiving tasks. Additionally, several caregivers struggled to find information through the patient’s medical team, so sought guidance from acquaintances, family, or friends with EOL care experience. Caregivers described often impromptu searches with passing contacts as “isolating” and “stressful” due to their reactive and random nature.

Caregivers also described providing emotional support during distressing discussions (for the patient, friends, or family), gatekeeping (preventing information being exchanged that the patient did not want to hear/share, or blocking physical access to the patient), liaising between groups (sharing information/arranging communication among groups), advocating (championing patients’ preferences), and facilitating (eliciting/coordinating difficult discussions) (Table 3). Many of these roles were emotionally draining and required caregivers to conceal their own distress to protect others and preserve valued identities (e.g., strong mother). As a wife (caregiver 11) explained, she had to “manage people’s expectations” while caring for her dying husband, “gently, but firmly” barring people from seeing him (Table 3, gatekeeper role). Caregiver 18, shared that she struggled to facilitate a conversation with her husband and his oncologist about EOL because he refused to believe he was dying (Table 3, facilitation role). Despite her efforts to elicit an explicit prognostic discussion, the oncologist only shared that treatment could not “cure him.” Her husband refused to interpret these words as being “terminal,” and so “[n]o one was more surprised that Joe died than Joe.”

Communication challenges & outcomes

All but three caregivers described communication challenges that negatively impacted their and their loved one’s experiences. These challenges generally fell into four themes (Figure 1): (1) Discordant communication needs between caregiver and patient; (2) limited opportunities for caregivers to satisfy their own communication needs; (3) caregivers’ uncertainty about their communication roles and needs; and (4) care teams overlooking caregivers’ communication roles and needs. Caregivers described their communication experiences influencing their and the patient’s distress, treatment decisions, care satisfaction, EOL care experiences, and bereavement.

Caregivers’ and Patients’ discordant communication needs and preferences

Discordant communication preferences were common; caregivers almost uniformly wanted more prognosis and EOL care information than patients. Many caregivers reported wanting to discuss these issues with the patient or care team but struggling to because the patient did not want the information. Discordant preferences caused substantial emotional distress and, for several, hindered EOL planning. One wife described her husband’s refusal to engage in EOL planning as “awful, because I felt like we couldn’t have those honest, open conversations,” causing her and her stepchildren uncertainty about how to honor his EOL wishes and thus “a lot of pain” (Caregiver 18). Her bereavement was ultimately harder because, without clarity about what the patient wanted his children to have, they hurried for mementos of him while she attempted to process her grief:

[I]f we had had a chance to talk about all of this then everybody would’ve been very clear…Instead, I get people coming at me saying, “I want this, this, this.” Whoa, whoa, whoa. Your whole world has been dumped upside down and they’re trying to take his slippers. It was insanity. But that’s what happens when you never had the conversation.

Little opportunity for caregivers to satisfy their communication needs

Discordant communication needs were often compounded by limited opportunities for caregivers to speak privately with the medical team about sensitive topics (e.g., prognosis), without involving the patient. Caregivers often cited this barrier made them unprepared for the end, which undermined their EOL decision-making processes, and exacerbated emotional distress and bereavement. For instance, caregiver 13, was a self-described “planner…[who] needed to give [herself] enough information to be strong throughout that process [EOL].” However, since her husband did not want to discuss EOL, “I really didn’t have any opportunity to talk to anybody because I was always with him, and these were all his appointments [emphasis added]…It wasn’t about me” (Table 4). Consequently, her inability to plan for EOL created distress and uncertainty, and she felt “on [her] own.”

Table 4.

Illustrative examples of challenges and outcome

Challenges	Example	Outcome
Discordant communication needs	[I]t was awful because I felt like we couldn’t have those honest, open conversations…because he didn’t wanna hear it – “I’m not dying”…[T]here was a lot of hurt with his children that if we had had a chance to talk about [distributing patient’s possessions] then everybody would’ve been very clear. But they weren’t clear…Instead, I get people coming at me saying, “I want this, this, this.” Whoa, whoa, whoa. Your whole world has been dumped upside down and they’re trying to take his slippers. It was insanity. But that’s what happens when you never had the conversation. (Caregiver 18, wife)	Caregiver distress Decisional conflict & regret EOL care decisions Bereavement
Little opportunity to satisfy communication needs	I had a difficult situation in that John – he didn’t want to talk about stuff like that [EOL planning]. He didn’t want to hear it. He didn’t want to talk about dying. He didn’t want to know what it was going to be like at the end. So I really didn’t have any opportunity to talk to anybody because I was always with him and these were all his appointments, not my appointments. They weren’t about me. It wasn’t about me. It was about him. (Caregiver 13, wife)	Caregiver distress Care satisfaction EOL care decisions
Uncertainty about communication roles and needs	I think most people don’t understand hospice [services] and when someone has a life-threatening disease like that, I think hospice [service] is available to you for six months. I didn’t know that – we didn’t sign up for hospice [services] until Dan made a decision that he wasn’t going to eat or drink…I think I would’ve liked to have known more about hospice [services]. (Caregiver 10, wife)	Decisional regret EOL care decisions Place & quality of death
Care teams overlook caregivers’ communication roles and needs	I feel like I’m chauffeur with these guys [oncology team], and that’s frustrating. So a lot of times when you feel like you’re undermined by the doctor, it’s frustrating…The doctor would be like, “How are you doing?” And she’d be like, “I’m okay.” And I knew she wasn’t. So it [her declining quality of life] wasn’t brought out. (Caregiver 1, husband)	Patient/caregiver distress Treatment decisions Decisional conflict Care satisfaction

Caregivers’ uncertainty about communication roles and needs

Caregivers’ described uncertainty about what prognostic and EOL care information they needed, who to ask, and whether it was even permissible to ask for this information. This uncertainty impeded caregivers’ ability to plan for EOL, ultimately negatively affecting decision-making, distress, and bereavement. Recalling the distress of caring for her husband as he lost neurological functions, one caregiver recommended that care teams “keep communication wide open…I think they [medical team] did in many, many ways…if we asked the right questions. But we didn’t know the questions to ask necessarily” (Caregiver 10). Uncertainty about providers’ communication responsibilities also hindered caregivers’ EOL preparation. Caregiver 19, whose husband refused to even write a will stated, “No one said, ‘You need to start planning for the end of [patient’s] life.’ I don’t know if you [cancer center providers] do that…I’m sure it would have been helpful, I just don’t know how that would have happened.”

Care teams overlooking caregivers

Several caregivers struggled to share information with the medical team, feeling that providers overlooked their perspective or input regarding care decisions. Caregivers reported this lack of acknowledgement could cause emotional distress, dissatisfaction with care, and create an obstacle to making medical decisions. For instance, caregiver 1 (Table 4) described interactions with his wife’s oncology team as “frustrating” because he felt the team only saw him as the “chauffeur” and did not invite his perspective when his wife concealed her profound functional decline from the medical team.

In contrast, three caregivers described open communication with the patient and care team without challenges. These caregivers detailed how open communication among themselves, patient, and care team about prognosis and EOL planning eased their grief and bereavement because it enabled preparing for the patient's final months. One caregiver and his wife, whose medical team gave a clear prognosis, altered his job and took trips to savor her remaining quality of life. When her quality of life and treatment options diminished, discussing choices helped them emotionally prepare for her death (Table 5).

Table 5.

Descriptive quotes of respondents with no unmet communication needs

Caregiver	Illustrative quote
Caregiver 16, husband	Caregiver: We talked about what she would do if given the choice between trying another chemotherapy knowing it wouldn’t work or make her sicker. So we were both prepared for that… Interviewer: So what do you think is most important to plan for? Caregiver: I think perspective – helping them [families] acquire a perspective that respects death. Because the whole avoidance thing is all about, ‘I don’t want to talk about that’…Why not treat death as a step in life that we make that you can prepare for and plan for and take away some of the horrible feeling that you have when it happens?
Caregiver 6, wife	[Doctor X] delivered such horrible news so eloquently. It was certainly not what we wanted to hear, but I just felt that we had in our little conference room the whole team–it was special, and it probably sounds weird…the NPs stayed on and talked about, “Okay, what do you wanna do next?” And [patient] wanted to be home…And I didn’t even know what a hospice house was…But they said that they would get in touch with [hospice services], and we would hear from them the next day. And that’s exactly what happened…So we were able to carry his wishes out. And the other thing that he really – which I thought was pretty forthright, is he said he wanted to have a hospital bed rather than dying in our bed because he thought that would be hard for me.

Another caregiver recalled how, when her husband shared with her that he was unsure he wanted further treatment, they met with his team about next steps (Table 5). As the wife described, she, her husband, and their medical team had a “special” session about her husband’s prognosis and EOL care. The team was able to help them identify and secure their EOL preferences by educating them about hospice services and making arrangements to “carry his wishes out.” The caregiver ended her description, noting that her husband, in these discussions, expressed his desire to bring her less pain by dying in a hospital bed rather than their shared bed.

Discussion

Our study indicates that family caregivers caring for a patient with advanced cancer are tasked with complex, information-heavy, and emotionally distressing communication responsibilities regarding prognosis and EOL planning, that few felt they managed successfully. Our analyses reveal the myriad of different groups and individuals that caregivers communicate with, the topics discussed, the communication roles that caregivers perform, and these communications’ potential impact. Nearly all caregivers described personal and systemic communication challenges related to prognostic and EOL discussions. These challenges included patients’ resistance to discussing EOL and caregivers’ uncertainty about their own communication needs and responsibilities, which could be exacerbated by limited opportunities for caregivers to satisfy these needs that care teams often overlooked. These communication challenges mattered: each caregiver described how their successes or difficulties communicating about prognosis and EOL care affected their and their loved one’s emotional distress, treatment decisions, and EOL preparedness, among other outcomes.

Like others, our study illustrates how prognostic and EOL communications are painful and complicated by uncertainty. Differing communication preferences about prognosis and EOL care have been previously documented (23-25); our analyses extend these findings by detailing how discordance impacts caregivers’ meaningful participation across the advanced care trajectory including areas like treatment decision-making, EOL discussions, and access to essential information about EOL care. Our study further extends prior work by demonstrating that caregivers’ ability to fulfill their communication responsibilities and needs can influence outcomes like EOL planning, distress, and acceptance. We also show that caregivers’ communication successes and failures are shaped not only by patients’ openness to discussing EOL issues, but also by care teams’ efforts.

Our study indicates that cancer caregivers need guidance on how to communicate with various partners and access information regarding prognosis and EOL planning. EOL communication interventions have primarily target patients and providers and have had modest or no discernable benefits (26, 27). One potential explanation may be that interventions have not sufficiently incorporated caregivers. Future research and clinical efforts should explore how care teams can support caregivers individually, and in partnership with patients, during prognosis and EOL planning discussions. Our findings suggest specific need areas include helping caregivers navigate uncertainty about communication roles, providing opportunities for caregivers to ask the care-team sensitive questions, helping patients and caregivers navigate differing informational needs, giving access to quality informational resources, and empowering caregivers to identify and ask about salient EOL-related topics. Caregivers’ communication needs cannot be solely met within the current cancer care paradigms, which is necessarily patient-oriented. Communication coaching, concrete educational resources, and communication tools such as question prompt lists could help caregivers facilitate EOL conversations with patients(28-32). These resources could also help caregivers’ advocacy efforts and searches for desired information and support.

Our study and others find that caregivers are integral to care, but frequently marginalized in care settings (16, 33-35). This tension raises questions about how healthcare systems should explicitly incorporate caregivers in patient care. Current policy similarly reflects the issue; the Caregiver Advise Record and Enable (CARE) Act’s requires hospitals to formally involve caregivers (i.e., register caregivers in patient’s medical record, inform caregivers of discharges or transfers, provide caregivers discharge information and education). However, these processes are not standardized or used in outpatient settings (36). This can complicate attempts to involve caregivers (36), while hindering efforts to ensure, assess, and improve caregiver involvement. Establishing caregiver records linked to patient health records, could help standardize caregivers’ involvement and improve providing (and billing for) support services for caregivers (36).

Our study is limited by the sample’s lack of racial and ethnic diversity and participants’ disproportionately high education attainment; experiences of caregivers of color and those with less education likely differ. Racial and ethnic minority’s underrepresentation in cancer caregiving studies is a pressing, prevalent issue(37, 38). Non-cancer caregiving studies suggest non-White and Hispanic caregivers’ communication abilities may benefit from collectivist cultural ideals that encourage more social support and familiarity with caregiving that could help caregivers know who to communicate with and how(39, 40). In contrast, studies show providers spend less time and have poorer quality communication with non-White patients(41); these patterns likely spillover to non-White caregivers. Similarly, studies of cultural health capital indicate that less educated patients lack the cultural knowledge to effectively navigate healthcare systems, and experience similarly poor-quality interactions with providers(42). Our sample also primarily consisted of patients’ partners; findings regarding patient-caregiver communication may not generalize to all caregivers. Communication expectations vary by interaction partners’ relation to one another and social role(42) and thus non-spousal caregivers like siblings or adult-children may not expect to discuss prognosis with a patient as much as a spouse would. Lastly, caregivers’ recollected communication experiences can be biased. Our study suggests, regardless, these caregivers’ recollections and emotional distress remain linked.

Conclusion

Family cancer caregivers are vital to prognosis and EOL planning communications. Caregivers are responsible for complicated, emotionally laden communication duties essential to ensuring goal concordant care. Few caregivers felt they successfully fulfilled these responsibilities largely due to challenges including patients’ and care team’s avoidance of communication about prognosis and EOL planning and caregivers’ uncertainty about what information they needed or where to find it. Importantly, our study suggests caregivers whose communication needs are met can plan logistically and emotionally for patients’ EOL period, improving patient and caregiver outcomes.

Key message:

Caregivers caring for advanced cancer patients are tasked with complex, challenging communication responsibilities regarding prognosis and EOL. Caregivers struggle to fulfill responsibilities largely due to limited opportunities and guidance on accessing information and patient avoidance of EOL topics. Communication challenges affected caregiver and patient outcomes including EOL decisions and distress.