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. Author manuscript; available in PMC: 2024 Nov 1.
Published in final edited form as: Omega (Westport). 2022 Jun 10;90(1):420–432. doi: 10.1177/00302228221107723

Application of terror management theory to end-of-life care decision-making: A narrative literature review

Laura M Perry 1,2, Brenna Mossman 2, Ashley B Lewson 3, James I Gerhart 4, Lily Freestone 2, Michael Hoerger 2,5,6,7,*
PMCID: PMC9734278  NIHMSID: NIHMS1831106  PMID: 35687031

Abstract

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received.

Keywords: terror management theory, serious illness, end-of-life care, palliative care, healthcare decision-making

Over 25 million individuals worldwide die each year of a serious illness such as advanced cancer or organ failure (Sleeman et al., 2019), and there is a need to better understand and support their end-of-life care decisions. People tend to value comfort, symptom alleviation, autonomy, and dignity at the end of life (Heyland et al., 2017). However, many instead make treatment decisions and receive care that conflicts with these values (Heyland et al., 2017; Kim et al., 2016; Mack et al., 2015). Over one-third of patients receive “aggressive” end-of-life care, which includes life-sustaining treatments such as cardiopulmonary resuscitation or mechanical ventilation, late-line chemotherapy regimans, as well as potentially unnecessary hospital visits (Cardona-Morrell et al., 2016; Duberstein et al., 2019). These aggressive services are often futile for extending life and may undermine quality of life, complicate the normative grief process, and increase medical costs (Abedini et al., 2019; Duberstein et al., 2019). Furthermore, many patients are reluctant to seek palliative care (Perry et al., 2019; Shulz et al., 2017), despite its potential to improve quality of life and reduce receipt of aggressive care (Hoerger et al., 2018; Hoerger et al., 2019).

Past research across multiple studies has suggested that poor end-of-life care decisions may be in part due to a lack of accurate information about available services and how they align with personal values (e.g., Heyland et al., 2017; Perry et al., 2021). However, an additional explanation may be that patients fail to engage proactively in critical end-of-life care decisions because they are motivated by fundamental human decision-making processes to avoid thinking about their death. The goal of the current paper is to describe how Terror Management Theory, a social psychology theory that was developed in non-clinical populations, applies to healthcare decision-making among seriously ill patients. Research in the U.S. (Brown et al., 2014), Canada (Schulz et al., 2017), Australia (Collins et al., 2018), and Kenya (Love et al., 2020) has begun to explore existential distress in the context of end-of-life decision-making but has not yet been explicitly linked to Terror Management Theory. Terror Management Theory explains human motivation and decision-making in response to death-related reminders across a variety of cultures (Pyszczynski et al., 2019), and thus can add to the knowledge base of the end-of-life care decision-making processes and clinical interventions around the world.

Overview of Terror Management Theory

Terror Management Theory (Pyszczynski et al., 2019) is grounded in social, existential, cultural, and evolutionary psychology and states that people are motivated to resolve the existential “terror” that comes from the uniquely human self-awareness that death is inevitable. Since death anxiety would substantially hinder the ability to pursue goals in other domains of living if not properly managed, humankind has developed a suite of cultural and psychological processes to regulate it. Culture includes shared values, customs, symbols, and understandings that function to help individuals find and apply meaning to their lives by answering fundamental questions about the reason for, the purpose of, and the nature of one’s existence. Terror Management Theory maintains that cultural beliefs and customs allow individuals to mitigate death anxiety through the promise of literal immortality (e.g., heaven, reincarnation, afterlife) or symbolic immortality (preserving one’s legacy after death through meaningful contributions to society). Furthermore, an individual’s level of self-esteem reflects their perceived success in upholding cultural values and achieving symbolic immortality (Pyszczynski et al., 2019). Empirical evidence demonstrates that priming individuals with mortality thoughts leads them to behave in ways that bolster their cultural worldview or self-esteem, and that increasing self-esteem beforehand decreases the anxiety experienced by these mortality primes (Pyszczynski et al., 2019; Pyszczynski et al., 2015). Researchers have studied the consequences of mortality awareness in the domains of intergroup relations, moral judgments, close relationships, and health behaviors (Ardnt & Goldenberg, 2017; Pyszczynski et al., 2019).

One component of the theory that has been applied in health contexts constitutes the dual-process model used to resolve conscious versus unconscious death thoughts. Individuals use “proximal defenses” to reduce the immediate discomfort of consciously salient death-related thoughts. These defenses can include denying vulnerability to disease or other threats, engaging in more health promotion, or actively suppressing the mortality-salient thoughts (Pyszycynski et al., 2019). According to the Terror Management Health Model (Ardnt & Goldenberg, 2017), individuals will engage in more health promotion as a proximal defense to conscious mortality reminders if they feel they have the resources to do so. If not, they engage in threat avoidance.

In contrast, when death-related thoughts are subliminally primed or only available at the unconscious level, such as during the majority of day-to-day life, individuals engage in “distal defenses.” These are behaviors that reinforce cultural norms and self-esteem to boost one’s sense of meaning and purpose in life. As an example, exercising or eating healthy may be a health-promoting proximal defense during a conscious mortality threat, or it may be a distal defense to manage terror on a daily basis among individuals and cultures that value the behavior (Ardnt & Goldenberg, 2017). Paradoxically, distal defenses could also include unhealthy behaviors like tanning or risky sex that may serve the function of boosting self-esteem by promoting societal values such as perceived attractiveness (Ardnt & Goldenberg, 2017). However, to our knowledge, the Terror Management Health Model has not yet been applied to healthcare-decision making among seriously ill patients.

Terror Management in Serious Illness

Living with a serious illness imposes one of the most salient and sustained reminders of mortality. Proximal reminders include symptoms, side effects, healthcare visits, and treatments that could all prime death awareness (Arndt & Goldenberg, 2017). Additionally, conversations about one’s prognosis, treatment options, and other health-related decisions require individuals to think directly about their inevitable mortality. As individuals consider their impending deaths, they may be encouraged to reflect on their familial, cultural, and financial legacies after death, all potentially serving as distal reminders. Accordingly, the prevalence of death-related distress is between 30-45% in this population (Lo et al., 2011; Neel et al., 2016), and patients may use both proximal and distal defense mechanisms to regulate distress.

Notably, patients who lack adequate emotional regulation resources may use proximal defenses such as suppressing death thoughts or avoiding death reminders. However, despite temporarily relieving death-related anxiety, these defenses can instead paradoxically increase distress in the long run (De Castella, Platow, Tamir, & Gross, 2018). Prior research has found that using denial is related to increased depression and anxiety (Nipp et al., 2016), and attempting to avoid unpleasant thoughts or emotions is prospectively associated with increased psychological distress at later timepoints (Larson et al., 2019). Conversely, meta-analytic evidence shows that accepting the experience of symptoms and the reality of one’s diagnosis is associated with less emotional distress (Secinti et al., 2019). Indeed, several interventions designed for patients with serious illnesses adopt an approach-based focus for mitigating death-related distress by simultaneously promoting healthier proximal mechanisms such as acceptance, while also boosting distal mechanisms such as self-esteem, meaning-making, spiritual strength, and family supports (Grossman et al., 2018).

Implications for End-of-Life Decision-Making

Figure 1 summarizes the potential implications of Terror Management Theory for end-of-life care decision-making. Given the persistent death reminders and prevalence of death anxiety in seriously ill patients, the theory explains defensiveness in discussing end-of-life care. About 20-30% of seriously ill patients in the U.S do not engage in advance care planning (Block et al., 2020; Harrison et al., 2016), and over 30% do not receive palliative care (Connor et al., 2021; Sleeman et al., 2019), despite that these services can improve decision-making at the end-of-life, prevent aggressive care, and reinforce receipt of care that is consistent with patients’ preferences and values (Abedini et al., Hoerger et al., 2018; Jimenez et al., 2018). Lack of utilization could, in part, reflect individual-level barriers related to Terror Management Theory, such as increased death anxiety, denial, and avoiding the topic of one’s own mortality.

Figure 1.

Figure 1.

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Terror Management Theory in Seriously Ill Populations: Hypothesized Conceptual Model

For example, some studies have found that patients with increased death anxiety tend to be less prepared for the end of life and less comfortable discussing end-of-life issues such as a Do Not Resuscitate order or an advance directive (Brown et al., 2014; Krause et al., 2015; Tong et al., 2016), which can translate into unnecessary and aggressive end-of-life care (Mossman et al., in press). These conversations often involve discussing the potential benefits of limiting life-sustaining treatments near the end of life that may undermine quality of life (Duberstein et al., 2019), which is directly at odds with a self-preservation motivation (Johnstone, 2012). Other research has found that a moderate amount of death anxiety is most motivating for engaging in advance care planning (Tong et al., 2016). To the extent that denial or suppression is effective for managing terror, individuals with the lowest levels of death anxiety may be those who are most unable to think and talk about their mortality, whereas those whose death anxiety is too high may be experiencing the combined effect of being unable to deny their nearing death as well as being unable to make peace with it; this heightened state of anxiety also hinders one’s ability to plan for the end of life (Tong et al., 2016). In sum, death anxiety contributes to one’s motivation to plan for end-of-life care.

Additionally, research leveraging Terror Management Theory may be particularly useful for advancing research on decision-making surrounding palliative care utilization. Palliative care is poorly understood by the general public, often misperceived as being equivalent to hospice care or care that is only relevant for those near death (Patel et al., 2020). Consequently, palliative care is often feared and unspeakable in a clinical context, leading to avoidance of discussions and referrals due to an association with death and mortality (Collins et al., 2018; Perry et al., 2019; Shulz et al., 2017). Moreover, because fear learning is associative and additive, new information on palliative care may augment or inhibit prior negative associations made between palliative care and death, but likely will not permanently dissociate these ideas. Therefore, pervasive misconceptions about palliative care could trigger patients’ needs to manage terror when the topic is brought up during care.

Accordingly, cognitive and emotional mechanisms underlying avoidance of palliative and end-of-life care discussions could be rooted in a universal terror management system (see Figure 1). For example, the finding that patients often misconstrue palliative care as meaning death suggests that the topic of palliative care activates death-related thoughts. To the extent that a situation induces a conscious awareness of death, individuals tend to respond with proximal defenses to mitigate the threat (Ardnt & Goldberg, 2017; Pyszczynski et al., 2015). Clinical anecdotes suggest that clinicians are keen on this process, referring to malignancies as “cysts” and hospice as “the h-word” in an attempt to dampen the fear-eliciting properties of these concepts. Therefore, patients may be actively avoiding the subject of palliative and end-of-life care to suppress death awareness and death anxiety. Furthermore, death anxiety is often accompanied by more general forms of emotional distress such as depression or anxiety (Lo et al., 2011), which in turn can be associated with negative attitudes toward palliative care (Gerhart et al., 2017). Thus, death anxiety may lead to the avoidance of care both directly and indirectly through unmanaged emotional distress.

Table 1 describes an example case scenario of when our model can apply in a clinical context. Jane is navigating the decision-making process associated with having an advanced, incurable cancer diagnosis. She encounters distressing symptoms, an unplanned visit to the emergency room, and has a conversation with her clinical care team about her prognosis and end-of-life treatment options. These are all examples of mortality reminders that could elicit death anxiety for Jane. At age 56, she is relatively younger and feels that she has not yet finished supporting her family’s needs or contributing to society, which are factors that may exacerbate her death anxiety; she is anxious about leaving her two college-aged children and an ongoing career behind. Jane may also lack the desired level of social and emotional support to help her adjust to her deteriorating health status, as she does not have a partner and typically attends her health visits on her own. Jane responds defensively during the end-of-life care discussion with her clinical care team. She avoids conversations about advance care planning and hospice care and opts for a treatment goal focused on curing the cancer, despite being aware of her incurable prognosis. While some would argue that a more rational decision would involve coming to terms with her terminal prognosis and selecting treatments focused on optimizing her quality of death, Jane’s decision-making process is complicated by the existential terror she experiences when confronted with her nearing mortality. It follows, then, that Jane may be better able to engage in shared-decision making if her immediate emotional needs can be actively supported, and if she can resolve concerns about her legacy and the well-being of her surviving children.

Table 1.

Case Example

Jane is a 56-year-old woman who was diagnosed with stage IV lung cancer about six months ago. She has completed two courses of chemotherapy in an effort to treat the cancer. During the past month, Jane experienced worsening fatigue and trouble breathing. After noticing blood in her cough, she visited the emergency room. She is currently single, lives on her own, and attends her healthcare encounters alone.

Follow-up testing showed that Jane’s cancer was worsening, and her oncologist explained that further anti-cancer treatment was unlikely to slow the progress of her illness. Jane’s oncologist recommended hospice care as an option for patients at her stage in the cancer trajectory. Jane understands her health status, but she is determined to try another course of chemotherapy because she’s not ready to “give up on her fight against cancer.” With two college-aged children whom she raised on her own and a busy work life, she doesn’t feel it is her time yet to leave the world.

Jane’s clinical care team reviews her chemotherapy options and their risks with her. Then, they begin to ask her about her wishes for medical care if she ends up in the hospital again and loses her decision-making capacity. In response, Jane was at a loss for words. Her hands wrang. She seemed horrified. Shaking her head, she said, “I can’t handle this right now. I do not want to think about these scenarios in relation to myself.”
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Finally, Terror Management Theory may help to explain why cultural differences exist in patient preferences for end-of-life care services. For example, people of color and those who are more religious tend to prefer life-prolonging treatment over palliative care near the end of life (Chakraborty et al., 2017; O’Mahony et al., 2021). Rather than religion contradicting Terror Management Theory, the theory helps explain religiosity-associated end-of-life care preferences, as religion can provide a distal defense against mortality awareness (i.e., through faith in an afterlife) (Pyszczynski et al., 2015). Moreover, the theory also explains that people will react to conscious reminders of death by behaving in ways that bolster their self-esteem and cultural worldview, which can vary across cultures and religious affiliations (Pyszczynski et al., 2015). In the context of end-of-life care decision-making, advance care planning conversations are often framed as giving individuals control of their own process of dying. While this may boost self-esteem and manage terror for individuals whose cultural worldview favors individualism, it may contradict other cultures that believe death is in the hands of fate or a higher power or those that have a stronger sense of collectivism (Balboni et al., 2013; Duberstein et al., 2019; Johnstone, 2012). Spiritual and cultural concerns can be addressed when discussing value-laden end-of-life decisions, especially since these values are often stronger than ever during the dying process. Patients may be more amenable to advanced care planning discussions when provided with appropriate spiritual supports (Lee et al., 2018).

Conclusion

Empirical findings and theoretical work from Terror Management Theory suggest that patients with advanced illness experience significant distress relating to the topic of their impending mortality. This distress could hinder decision-making and reduce the quality of care received at the end of life due to defensiveness or other avoidant emotional regulation mechanisms. This article underscores the need for more research examining terror management-related pathways in end-of-life care decision-making.

Our hypothesized conceptual model has implications for advancing research in end-of-life care decision-making. Research on improving healthcare decision-making in serious illnesses has focused largely on rational processes such as ensuring that patients are adequately informed about their health status and available treatment options, actively engaged in the decision-making process, and receive care aligned with their goals, preferences, and values (Baik et al., 2019; Fine et al., 2010). However, little research has been conducted on less rational cognitive-emotional processes that can serve as patient-level barriers to engaging in end-of-life decision-making (Ellis et al., 2019; Perry et al., 2021; Schulz et al., 2017 Tarbi et al., 2021). Terror Management Theory is well-established in the psychology literature and maintains that people experience existential terror when reminded of their own mortality and, in response, often use avoidance to combat their death anxiety (Pyszczynski et al., 2019). While the theory has been used to explain other areas of human judgment and decision-making (Arndt & Goldenberg, 2017; Pyszczynski et al., 2015), it has not yet been applied to the end-of-life decision-making process, despite the heightened levels of mortality awareness and perceived risk of dying at this stage of life. Our model hypothesizes that using avoidance, denial, and other maladaptive defenses in response to mortality reminders can hinder the end-of-life decision-making process and quality of end-of-life care received. Future studies are needed to explicitly test the pathways hypothesized in the model. This work will add to the existing body of knowledge about end-of-life decision-making and inform the design and delivery of patient-level interventions for improving the dying process in serious illnesses.

Uncovering mechanisms outlined in our conceptual model has implications for improving clinical practice by contributing to interventions for alleviating death anxiety or improving engagement in critical healthcare communication and decision-making. For instance, seriously ill individuals with very low levels of death awareness may be actively suppressing activation of death thoughts and may benefit from empathetic encouragement from clinicians or family members to discuss important healthcare plans. In contrast, those with high levels of death anxiety may benefit from first addressing their distress before moving on to difficult decision-making. According to clinical research in seriously ill populations (Grossman et al., 2018; Secinti et al., 2019), as well as theoretical underpinnings of death anxiety (Pyszczynski et al., 2019), therapies should focus on replacing avoidant proximal defenses with the process of acceptance. Other interventions focused on bolstering distal defenses through meaning-making, dignity, and legacy review could help to proactively prevent death anxiety (Grossman et al., 2018). Additionally, if the decision to engage in end-of-life care planning or palliative care can be re-appraised as a health-promoting decision rather than as threatening one’s existence, patients may be more motivated to pursue these options. Recent efforts have focused on developing and disseminating educational interventions about the benefits of advance care planning (Cardona-Morrell et al., 2017) and palliative care (Perry et al., in press) that aim to address misconceptions and improve comfort with these services.

Funding information:

Dr. Perry was supported by the NIH/NCI training grant T32CA193193. Dr. Gerhart’s palliative care research and outreach is supported by the Michigan Health Endowment Fund. Dr. Hoerger and Ms. Mossman were supported by the American Cancer Society (134579-RSG-20-058-01-PCSM).

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