Lived experiences of well-intended but hurtful cancer communication: Insights for death literacy

Introduction

A cancer diagnosis reverberates across the social worlds in which individuals live, work, and construct meaning. Although cancer is often approached through biomedical trajectories and clinical encounters, much of its lived impact unfolds beyond healthcare settings through everyday interactions with partners, relatives, friends, colleagues, neighbors, and wider community networks.^1,2 Illness experiences are therefore not only biological events but also social processes through which identities, relationships, and expectations are negotiated.^3,4 Within these interactions, people draw on culturally available ways of speaking, feeling, and relating to illness. ⁵ Everyday conversations thus become key sites where individuals living with cancer encounter responses that are often well-intentioned yet not always experienced as supportive, particularly when they shape how uncertainty, vulnerability, and the possibility of death can be acknowledged in social life.^6,7

Research in psychosocial oncology and the sociology of illness suggests that communication about cancer is shaped by normative expectations surrounding positivity, normalcy, and emotional self-management. ⁸ From a sociological perspective, such encounters can be understood as forms of emotion work through which individuals attempt to align expressions of illness with socially shared feeling rules (e.g., Goffman and Hochschild). Interpersonal tensions may therefore arise not necessarily from deliberate insensitivity, but from patterned responses that implicitly regulate how illness should be experienced and expressed. ⁹ These dynamics are reinforced by broader cultural narratives surrounding cancer - particularly within breast cancer discourse - which emphasize optimism and the moral value of fighting the illness.^10–12 While such narratives may aim to encourage resilience, they can also frame positivity as a social expectation that constrains expressions of fear, vulnerability, or uncertainty.^13,14 Consequently, individuals living with cancer may find it difficult to openly engage with more troubling aspects of illness, including concerns related to deterioration, uncertainty, and mortality.

Public health palliative care provides a useful framework for situating these dynamics within a broader social context. Rather than locating care solely within healthcare institutions, this approach conceptualizes dying, caregiving, and bereavement as experiences embedded within community life^15–18 From this perspective, the capacity of individuals and communities to engage with serious illness and end-of-life experiences becomes an important focus of inquiry. Within this tradition, the concept of death literacy has emerged to describe not only knowledge of end-of-life care, but also the preparedness, skills, experiences, and social resources that enable individuals and communities to understand and engage with death, dying, caregiving, and bereavement^19–21

Interest in death literacy has grown in recent years, particularly in relation to how communities can be better supported to engage with dying and end-of-life care. Much of this research has focused on conceptualizing and measuring death literacy through instruments such as the Death Literacy Index, which primarily assess individuals’ perceived knowledge, confidence, and access to end-of-life care.^19,21,22 Within this work, communication about death and dying is typically framed in terms of self-reported willingness or readiness to discuss these issues rather than examined as a situated social practice unfolding through everyday interactions.^23–25 Consequently, death literacy is largely examined in terms of individuals’ perceived knowledge, confidence, or willingness to talk about death, while the question of whether such responses are experienced as appropriate within particular social interactions remains comparatively underexplored.

Viewing death literacy through an interactional lens thereby shifts attention from perceived capability toward the communicative practices through which people respond to serious illness in everyday contexts. From this perspective, death literacy involves not only knowledge or willingness to engage with death-related issues, but also the capacity to respond to illness and the possibility of death in socially and emotionally appropriate ways within relationships and communities.

Cancer provides a particularly revealing context in which to examine these processes. Unlike many acute illnesses, cancer often unfolds across prolonged and uncertain trajectories. Sociological research has described such experiences as forms of illness liminality, in which individuals occupy an ambiguous space between health and illness, survivorship and mortality.^26,27 Even when death itself remains socially unspoken, awareness of mortality may subtly shape expectations, interactions, and interpretations of illness. Everyday communication surrounding cancer therefore becomes a site where broader cultural understandings of vulnerability, uncertainty, and mortality can be negotiated.^1,28

The present study draws on narrative accounts from a national survey of people living with cancer in Belgium to explore everyday communication practices that participants describe as well-intentioned yet sometimes hurtful. Following the work of narrative scholars such as Catherine Riessman and Arthur Kleinman,^29,30 rather than treating these accounts solely as descriptions of interpersonal incidents, this analysis explores them as reflections of broader, socially recognizable communication patterns through which illness, uncertainty, and possible mortality are negotiated. By examining these experiences through the lens of death literacy, the study suggests that engagement with death and dying is not only a matter of willingness to talk about mortality, but may also involve socially situated judgments about how such conversations are conducted and experienced as appropriate, supportive, or, at times, silencing.

Methods

Results

Across the dataset, participants described hurtful communication not primarily as isolated interpersonal failures, but as recurring social responses to illness, uncertainty, and possible mortality. The analysis generated five interrelated themes capturing ways in which everyday communication could minimize, regulate, invalidate, avoid, or displace participants’ lived experiences of cancer.

Discussion

This study explored how people living with cancer experience everyday communication that is perceived as well-intended yet hurtful. Across participants’ accounts, communicative difficulties emerged not primarily as isolated interpersonal failures, but as recurring ways of responding to illness, disruption, and possible mortality within everyday social life. Participants described interactions that attempted to restore normality, encourage optimism, regulate emotional expression, redirect discomfort, or avoid engagement altogether. While often intended as supportive, these responses could simultaneously limit opportunities to openly express fear, exhaustion, ambiguity, and emotional vulnerability.

Importantly, the findings should not be interpreted as suggesting that reassurance, optimism, humor, or attempts to normalize are inherently inappropriate. Participants themselves frequently recognized these remarks as efforts to comfort, encourage, or reduce discomfort. Rather, the findings highlight the relational tensions involved in responding to serious illness. Attempts to alleviate distress may also inadvertently restrict acknowledgment of suffering, ongoing uncertainty, or the possibility of deterioration and death. The issue therefore appears not simply to concern what is communicated, but how communication becomes aligned - or misaligned - with participants’ lived realities and illness trajectories.

Viewed collectively, participants’ accounts suggest that communication surrounding cancer may be shaped by broader social and cultural repertoires for responding to serious illness.^5,8,9 Across themes, participants described communication that constrained opportunities to openly engage with the disruptive and uncertain dimensions of illness. These responses did not necessarily deny illness altogether, but often redirected, regulated, minimized, or avoided aspects of participants’ experiences that were emotionally difficult or existentially threatening.

Consistent with narrative approaches to illness developed by Riessman and Kleinman,^29,30 these accounts can be understood not simply as descriptions of isolated interactions, but as narrative reconstructions of broader socially shared ways of interpreting and responding to illness and suffering. Participants’ narratives therefore illuminate culturally available communicative scripts through which cancer, vulnerability, and mortality become negotiated within everyday interaction.^32,33 From this perspective, hurtful communication may reflect not only individual discomfort, but also wider narrative and moral frameworks shaping what can comfortably be acknowledged, expressed, or sustained in social life.

This study contributes to ongoing discussions surrounding death literacy by approaching communication not primarily as an issue of willingness or readiness to discuss death, but as an interactional and relational practice unfolding within ordinary social relationships. Existing death literacy research has predominantly focused on perceived knowledge, preparedness, confidence, and access to end-of-life resources.^19,21,22,25 While these approaches have been essential for establishing death literacy as a public health concept, they offer less insight into how communicative competence is enacted within everyday encounters with illness and possible mortality.

The findings suggest that individuals may feel willing to engage with serious illness while still relying on familiar conversational strategies that inadvertently constrain dialogue or invalidate lived experience. From this perspective, communicative engagement with illness and mortality may involve more than knowledge or openness alone. It may also require capacities such as tolerating ambiguity, recognizing emotional and relational cues, remaining present with distress, and resisting the impulse to prematurely resolve uncertainty.^24,25 These capacities appeared particularly relevant when communication became overly reassuring, morally prescriptive, avoidant, or redirected away from the participant’s own experience.

At the same time, the relationship between the findings and death literacy should be interpreted cautiously. This study did not directly measure death literacy, nor does it claim that the communicative experiences described by participants constitute direct evidence of individual or community-level death literacy deficits. Rather, the findings are suggestive of possible constraints in the socially available ways people respond to serious illness and possible mortality within everyday interactions. In this sense, the study extends death literacy conceptually by highlighting the importance of communicative and relational practices through which vulnerability and uncertainty are socially negotiated.

The findings additionally resonate with sociological work on illness liminality and culturally dominant cancer narratives. Cancer often places individuals in ambiguous positions between health and illness, recovery and deterioration, survivorship and mortality.^26,27 Such liminal experiences can generate uncertainty not only for patients themselves but also for those around them. Participants’ accounts suggest that many communicative responses functioned to contain or manage this ambiguity by restoring predictability, positivity, or emotional control. Similarly, participants’ narratives reflected broader cultural narratives surrounding cancer, particularly narratives emphasizing resilience, fighting spirit, self-management, and recovery.^10–14 While these narratives may provide socially meaningful ways of responding to illness, they may also narrow the range of experiences and emotions that can comfortably be acknowledged within interaction.

Several findings also point toward the relational complexity of serious illness communication. Participants did not merely describe a lack of support, but often described communication that became emotionally displacing, burdensome, or difficult to sustain. Particularly within the themes of relational withdrawal and narrative displacement, participants described becoming responsible not only for managing illness itself, but also for navigating the discomfort, uncertainty, or emotional reactions of others. These findings align with previous research suggesting that serious illness can disrupt established relational roles and communicative expectations within families, friendships, and workplaces.^1,6,9

The study also has implications for public health palliative care and compassionate community approaches. If communication surrounding illness and mortality is partly shaped by socially shared repertoires that remain relatively limited or discomfort-driven, strengthening community capacity may involve more than increasing knowledge about end-of-life care alone. It may also involve fostering relational and communicative capacities that enable individuals and communities to remain present with emotional complexity, uncertainty, and vulnerability without prematurely closing down conversation. Community-based initiatives such as support groups, peer-led spaces, oncology walk-in centers, and compassionate community initiatives may provide important environments in which such capacities can be practiced, reflected upon, and gradually developed.^{15–17,34–37}

Several limitations should nevertheless be considered when interpreting the findings. The study is based on retrospective responses to a single open-ended survey item, many of which consisted of short and decontextualized narrative fragments. The findings therefore reflect participants’ interpretations and reconstructions of communicative encounters rather than direct observations of interaction in real time. As such, the analysis cannot establish communicative intent, conversational dynamics, or how interactions unfolded relationally over time. The communicative patterns identified should therefore be understood as recurring interpretive logics within participants’ accounts rather than as objectively verifiable interactional categories.

In addition, the sample was predominantly composed of women and breast cancer patients recruited through support organizations and cancer-related networks. Public discourse surrounding breast cancer is strongly shaped by narratives of survivorship, positivity, emotional resilience, and appearance, and these broader cultural narratives likely influenced both the communication participants encountered and the ways in which these experiences were interpreted and narrated.^10–14 The findings should therefore not be assumed to apply uniformly across cancer types, genders, or social contexts. Future research using interviews, ethnographic approaches, or interactional methods could further explore how communicative tensions surrounding illness and mortality are negotiated within situated relationships and how supportive communication is experienced alongside difficult encounters.

Conclusion

This study examined how people living with cancer experience everyday communication that is perceived as well-intended yet hurtful. Participants described communication as harmful when it minimized, redirected, regulated, or withdrew engagement with their lived realities of illness.

Drawing on narrative perspectives on illness and meaning-making developed by Riessman and Kleinman,^29,30 the findings suggest that communication surrounding cancer may be shaped by culturally available scripts through which vulnerability and mortality become socially negotiated. By approaching death literacy as a communicative and relational practice rather than solely a measure of readiness or knowledge, this study highlights the importance of examining how everyday conversations surrounding serious illness unfold within social relationships and communities.

The findings suggest that strengthening death literacy may involve more than increasing willingness to engage with death and dying. It may also require fostering relational capacities to listen, remain emotionally present, and tolerate uncertainty without prematurely resolving, redirecting, or minimizing it. In this sense, everyday communication represents an important site through which communities collectively negotiate vulnerability, care, and the implicit presence of mortality in serious illness.