Abstract
Prior interventions have repeatedly failed to decrease the prescription and receipt of treatments and procedures that confer more harm than benefit at the End-of-Life (EoL); new approaches to intervention are needed. Ideally, future interventions would be informed by a social-ecological conceptual model that explains EoL healthcare utilization patterns, but current models ignore two facts: (1) healthcare is an inherently social activity, involving clinical teams and patients’ social networks, and (2) emotions influence social activity. To address this omission, we scaffolded Terror Management Theory and Socioemotional Selectivity Theory to create the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE). Based on Terror Management Theory, TRIBE suggests that the prospect of patient death motivates healthcare teams to conform to a biomedical norm of care, even when clinicians believe that biomedical interventions will probably be unhelpful. Based on Socioemotional Selectivity Theory, TRIBE suggests that the prospect of dwindling time motivates families to prioritize emotional goals, and leads patients to consent to disease-directed treatments they know will likely be unhelpful, as moral emotions motivate deference to the perceived emotional needs of their loved ones. TRIBE is unique among models of healthcare utilization in its acknowledgement that moral emotions and processes (e.g., shame, compassion, regret-avoidance) influence healthcare delivery, patients’ interactions with family members, and patients’ outcomes. TRIBE is especially relevant to potentially harmful EoL care in the United States, and it also offers insights into the epidemics of overtreatment in healthcare settings worldwide. By outlining the role of socioemotional processes in the care of persons with serious conditions, TRIBE underscores the critical need for psychological innovation in interventions, health policy and research on healthcare utilization.
Introduction
More people than ever will need End-of-Life (EoL) care in coming decades, given the aging of the large baby-boom cohort in populations worldwide (Bartels and Naslund, 2013; Beck, 2009). Despite high rates of public preference for a peaceful death at home (Hamel et al., 2017), too many individuals with incurable disease receive disease-directed treatments, procedures, or services that confer more harm than benefit at the EoL (Duberstein et al., 2020; Luta et al., 2015). Conversely, too few receive interventions that would confer more benefit than harm, including pain control (Institute of Medicine, 2015; Sallnow et al., 2022). By some counts there are more than 300 potentially harm-conferring discretionary interventions at the end-of-life (DIALs), such as chemotherapy (Duberstein et al., 2020; Henson et al., 2020). Starting with the SUPPORT study (Anonymous, 1995), there have been numerous unsuccessful attempts to decrease the prescription and receipt of harm-conferring, disease-directed treatments (Abedini et al., 2019). To improve healthcare, there is a need for social-ecological conceptual frames that explain why disease-directed treatments are offered when there is no longer hope for sustained improvement, let alone a cure. In this paper, we offer a conceptual frame, the Transtheoretical model of Irrational Biomedical Exuberance (TRIBE), that is relevant to both EoL care in the United States, and to the broader problem of low-value care worldwide (Crowley et al., 2020; Elshaug et al., 2017; Fuchs, 1968; Le Fanu, 2012; Sallnow et al., 2022).
The language used to describe biomedical exuberance at the EoL is contestable. We chose a relatively value-neutral term (DIALs) instead of widely-used terms such as potentially avoidable (Daly et al., 2016), burdensome (Teno et al., 2013), inappropriate (Wolf et al., 2015), unduly intensive (Gidwani-Marszowsk et al., 2018), futile (Huynh et al., 2014), wasteful (Almoosa et al., 2016), and aggressive (Earle et al., 2008) because judgmental terms adversely affect policy (Tinetti, 2012) and practice (Maciasz et al., 2013). The acronym, DIALs, suggests that treatments could be calibrated -- dialed up or dialed down. Typically, they are dialed up (Aldridge and Bradley, 2017) and patient quality-of-life worsens (Zhang et al., 2012).
Hundreds of qualitative, quantitative and mixed-methods articles have highlighted other costs of DIALs to individuals, families, and society. For example, DIALs have been associated with worse bereavement outcomes in family caregivers (Wright et al., 2008), missed opportunities to divert resources elsewhere (Huynh et al., 2014), and clinician moral distress (Meier et al., 2001; Piers et al., 2011). Elevated heath care costs, financial strain on families, and catastrophic costs leading to poverty have also been documented (Osborn et al., 2014; Ramsey et al., 2016; Sallnow et al., 2022; Zhang et al., 2009).
In contrast to the burgeoning literature documenting the harms of DIALs, only two conceptual frameworks (Kelley et al., 2010; Prigerson and Maciejewski, 2012) have attempted to explain why dying patients receive potentially harm-conferring treatments (e.g., chemotherapy), procedures (e.g., surgeries), or services. Both frameworks can inform the development of individual-level interventions, but healthcare is an inherently social activity, involving two social groups: clinical teams (Nelson et al., 2002; Pask et al., 2018) and patients’ social networks (Pescosolido, 1992). Moreover, consistent with biopsychosocial (Engel, 1980) and social-ecological (Bronfenbrenner, 1979) approaches to human development, the provision and receipt of healthcare is shaped by the actions of individuals and entities operating at other levels of analysis in the healthcare ecosystem, including multiple government sectors (e.g., health financing, health policy, aging policy) and the private sector (e.g., for-profit and nonprofit entities). Although research has highlighted the role of emotions in team-based healthcare and family medical decision-making (Bluhm et al., 2016; Buiting et al., 2011; Djulbegovic et al., 2016; Finucane, 2013; Frosch et al., 2012; Good et al., 2004; Jackson et al., 2008; Steinhauser et al., 2000), we are aware of no conceptual frame that elevates the social dynamics and attendant moral emotions driving DIALs or healthcare utilization more broadly.
The Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE) fills that gap. Just as a prior integration of two psychological theories led to novel hypotheses that would not have been formulated by either theory alone (Mikulincer et al., 2003), the TRIBE model scaffolds two theories, Socioemotional Selectivity Theory (Carstensen, 2006) and Terror Management Theory (Greenberg et al., 2014), to explain how conformity on clinical teams and superficial emotional deference within families motivate DIALs. Conformity on clinical teams and superficial emotional deference are behaviors that are themselves motivated by fears that, when making a morally salient decision, one might behave in a manner that fails to comport with someone else’s (imagined) expectations. Clinicians, patients, and family caregivers all thereby participate in a moral performance, signaling to each other via established scripts (Butler, 1988; Nentwich and Morison, 2018) that they are behaving in a manner that is morally acceptable and socially expected. For example, a patient may be prepared for death but, not wanting to disappoint his daughter, consents to dialysis; he ultimately regrets the decision given his need for repeated hospitalizations (Russ et al., 2007; Saeed et al., 2020). In a poignant account of what may be termed “performative chemotherapy,” palliative care physician Diane Meier (2014) described how an oncologist candidly confessed to her that he prescribed aggressive, futile treatments to a dying patient because he did not want the patient to think she was being abandoned. Nor did he want Meier to think he was abandoning the patient, as Meier revealed in a conference talk (2013). Thus, acts of prescribing and receiving DIALs, such as chemotherapy or dialysis, are occasionally performative, byproducts of moral performances that reflect patient and caregiver deference to each other and clinician conformity to professional norms. Before explicating how this occurs, we review two key concepts that are central to the TRIBE model: irrational biomedical exuberance (Fuchs, 1968) and the moral emotions (Haidt, 2003; Tangney et al., 2007).
Irrational Biomedical Exuberance
We derived the concept of irrational biomedical exuberance from former Federal Reserve Chairman Alan Greenspan’s (1996) famous question (“How do we know when irrational exuberance has unduly escalated asset values?”) and Victor Fuchs’ (1968) work on the technological imperative. Writing about soaring health care costs five decades ago, Fuchs observed that “medical tradition emphasizes giving the best care that is technically possible; the only legitimate and explicitly recognized constraint is the state of the art” (p. 192). Soberingly, it seems that there are no limits whatsoever. In one satirical account, a surgeon rushed to repair a fracture on a 97-year-old patient – who had died (Neuman, 2010). In contrast to “medical tradition,” Fuchs (p. 192) averred that manufacturers and those working in human service or in other health care professions, such as dentistry, “do not, and are not expected to, produce the best [product] that engineering skills permit.” Only those working in medicine or the military “in time of total war” are expected to use state-of-the-art technology, oblivious to the economic costs, environmental damage, or burden on future generations.
In many Western health care settings, irrational biomedical exuberance is emboldened by a norm, biomedicalism, that encourages norm-adherents to believe that even intractable, complex (Rittel and Webber, 1973; Glouberman and Zimmerman, 2004) problems can be solved or fixed by treatments, interventions or procedures. Anchored in a 17th century worldview (Engel, 1992), biomedicalism is well-suited to the treatment of curable diseases that obey mechanistic laws of nature, but is ill-suited for incurable disease. The norm prioritizes disease-modifying biomedical treatment; not offering such treatment is conflated with abandonment (Quill and Cassell, 1995). The norm is accompanied by Western approaches to problem-definition and problem-solving, which tend to be mechanistic, piecemeal, focalist, and analytic, as opposed to holistic, relational, and interdependent (Henrich, 2020; Henrich et al., 2010). Biomedicalism spawns reductionism (Engel, 1992) and medicalization (Conrad, 2005; Illich, 1976), a psychocultural process by which powerful, high-status individuals, groups, and organizations, due largely to self-interest, authoritatively define ubiquitous experiences, such as aging (Clarke et al., 2009; Kaufman et al., 2006), as problems requiring costly medical intervention. Medicalization is poorly aligned with the need to craft innovative solutions for other pressing societal challenges that demand public and private resources, such as psychological suffering (Horwitz and Wakefield, 2007) and dying (Clark, 2002; Gawande, 2017; Sallnow et al., 2022). Contextualist social-ecological models can help resolve these and other complex, challenges, including gender-based violence (Heise, 1998), health disparities (Krieger, 2008), HIV prevention and AIDS care (Kaufman et al., 2014), homelessness (Fowler et al., 2019), and, as we argue here, irrational biomedical exuberance.
Motives to prescribe DIALs are prima facie innocuous - to avoid death, save a life, “do all we can,” “fight a battle,” and “never give up” (Good et al., 1990). In this frame, the risk of not using a DIAL is worse than using one, even when prescribers know that they may be engaging in futile biomedicalism or offering interventions that might confer indelible harm. Seemingly innocuous motives to prescribe DIALs are sacralized (McCleary and Barro, 2006; Weber, 2002) in medical culture and the healthcare workplace (Drought and Koenig, 2002; Kaufman et al., 2006). They are morally imbued, ritualistic defaults (e.g., cardio-pulmonary resuscitation [CPR]), even when performative, as in slow-code CPR (Lantos and Meadow, 2011).
As with any sacralized, group-based moral act, it is easy to turn a blind eye and not delve below the surface to understand the act’s origins or consequences (Haidt, 2012; Henrich, 2020; Kendi, 2017). In his explanation of the insatiable demand for medical care, Fuchs (1968) signaled that we must delve below the surface. By comparing medicine to the military in time of total war he implied that the prospect of death motivates decision-makers to make risk-benefit calculations that are inconsistent with widely-accepted rationalist principles. Our premise is that Fuchs’ “technological imperative” motivates ostensibly moral acts (e.g., prescribing, treating, military deployment, etc.) in a manner that blinds and binds participants to unintended consequences (Haidt, 2012) precisely because the moral emotions guide their decision-making.
Moral Emotions in Western End-of-Life Care
TRIBE is unique among conceptual models of healthcare utilization in its emphasis on group processes (e.g., conformity on clinical teams, superficial emotional deference in families) and its premise that emotions (Barrett, 2017), particularly the moral emotions (Haidt, 2003; Tangney et al., 2007, Table 1) motivate behavior in group settings. By definition, moral emotions “are linked to the interests or welfare either of society as a whole or at least of persons other than the judge or agent” (Haidt, 2003, p. 853). Emotions are recognized in models of patient/caregiver/clinician communication (White et al., 2018), but theorizing about the role of moral emotions in healthcare utilization is nonexistent. Andersen’s influential model of healthcare utilization (Andersen and Newman, 1973; Andersen, 1995; Bradley et al., 2002; Phillips et al., 1998) does not mention the role of emotion, let alone the moral emotions. Clinicians’ emotional competencies are ignored in impactful approaches to conceptualizing and assessing healthcare quality (Anhang Price et al., 2014; Donabedian, 1966). New theories of medical overuse (Nassery et al., 2015) pay little attention to emotion; the same is true of older theories of organizational change (DiMaggio and Powell, 1983). Influential models of health behavior, such as social cognitive theory (Bandura, 2001), the transtheoretical model (Prochaska, 2008), and the theory of planned behavior (Ajzen, 1991) acknowledge the role of norms (Birken et al., 2020) in behavior change, but not the critical role of the moral emotions in shaping or sustaining those norms. In the United States, where “Western” (Henrich, 2020; Markus and Kitayama, 2010) focalist (vs. holistic) approaches to problem-solving guide piecemeal fee-for-service (vs. capitated/bundled) medical payments that contribute to excess spending (Papanicolas et al., 2018) and the sacred cow of biomedicalism (Leff and Finucane, 2008) motivates overtreatment (Angell and Relman, 2002; Crowley et al., 2020; Relman, 1994; Rosenthal, 2017), there remains a dearth of theorizing that recognizes the foundational role of the moral emotions in healthcare.
Table 1.
Moral emotions, processes, and motives in healthcare
| Shame and Guilt. Emotions that are primarily evoked by moral lapses; in shame, the primary concern is others’ evaluations of the self. In guilt, the primary concern is the negative effect of one’s behavior. Shame is more painful than guilt because one’s core self is impugned, not simply one’s behavior. People experiencing shame will often try to defend against, deny, conceal, hide, or escape from the shame-inducing situation. In contrast, guilt can generate remorse which can lead to proactive verbal actions (confessions, apologies) and enduring behavior change. Whereas guilt can increase sympathy and compassion, shame can have the opposite effect and lead to disgust, contempt or moral indignation. |
|
Anticipatory Shame-Avoidance: Engaging in an action that is motivated by the desire to avoid others’ anticipated disgust, contempt, or moral indignation; contributes to clinicians’ emotion-driven conformity to the local norm. Anticipatory Guilt-Avoidance: Engaging in an action that is motivated by the desire to avoid impugning one’s behavior (to oneself) or giving the appearance to oneself of harming another. Also referred to as regret-avoidance; contributes to clinicians’ emotion-driven conformity to the local norm. |
| Sympathy, Compassion, Empathy: Interpersonal moral processes, not emotions, that contribute to superficial emotional deference in end-of-life care. These processes are evoked by the imagined or actual emotional state of another. Whereas sympathy merely involves feelings of concern for the emotional state of another, compassion motivates action that is propelled by the desire to alleviate the other’s imagined or actual suffering. Of these three interpersonal processes, only empathy requires an accurate interpretation of the other’s emotional state; empathy is thus less common than sympathy or compassion. |
| Disgust, Contempt, Moral Indignation: Strong emotional responses that are evoked by moral violations. Disgust is also evoked by physical objects (e.g., rotten food). No matter what the source, disgust motivates a desire to avoid, expel, or escape from the offensive object, often accompanied by a motivation to wash, purify, or remove any reminder of the object. Contempt is similar to disgust but is evoked primarily if not explicitly by moral or social violations, not physical objects, and is not accompanied by purification motives. Unlike expressions of contempt, expressions of moral indignation always involve an explicit reference to a moral violation. Clinicians’ emotion-driven conformity may be motivated by anticipatory avoidance of colleagues’ disgust, contempt, and indignation. |
Note. The definitions provided here were synthesized from numerous sources, especially Haidt (2003, 2012) and Tangney et al. (2007).
No conceptual frame can attempt to explain all of the vagaries of EoL care that might lead to DIALs. Our focus is confined to clinician conformity to local norms on clinical teams and superficial emotional deference in patients and families. These tribes – care teams and social networks – shape the experience and expression of moral emotions that fuel EoL treatment.
Conformity on Clinical Teams and Superficial Emotional Deference in Families
Conformity to local norms on clinical teams.
Conformity is a basic value and universal (Schwartz et al., 2012) phenomenon. Conformity can explain the presence of local norms in healthcare settings (Barnato, 2017; Barnato et al., 2014; Cutler et al., 2019; Molitor, 2018) and why EoL treatment intensities vary from region-to-region and hospital-to-hospital (C-TAC, 2019; Dartmouth Atlas Project, 2019). When physicians re-locate from one part of the country to another, or one hospital to another, their practices often shift to reflect local norms (Molitor, 2018). Clinicians may deliberately conform to peer norms, but we posit that conformity behavior on clinical teams is partially accounted for by nonconscious, mimetic processes that have been shown to explain, for example, how spouses grow alike over time (Monin and Schulz, 2009; Zajonc et al., 1987). Procedural conformity to a norm can explain why advance directives are often ignored at the point-of-care and thus have had profoundly disappointing effects (Jimenez et al., 2018; Morrison, 2020) and how “clinical momentum” makes it impossible to slow down and deliberate in intensive care units (Kruser et al., 2017). In many healthcare settings, decisions are made without reflection, often with unfortunate consequences for patients (Kruser et al., 2017), clinical teams, families, and society. Although supply-side (e.g., clinician preference) and demand-side (e.g., patient preference) factors both explain variation in healthcare utilization, supply side factors are far more important (Cutler et al., 2019; Finkelstein et al., 2016), and are particularly vulnerable to conformity effects.
Superficial emotional deference in families.
Fear and uncertainty motivate patients to seek input from others after learning that they have a life-limiting diagnosis (Ferrer et al., 2021). High-stakes decisions around EoL care are, ideally, evidence-based and, inevitably, emotion-based (Ellis et al., 2019). Unfortunately, patients and families often misunderstand (Malhotra et al., 2019) the evidence and misconstrue others’ emotions. Moral emotions are paramount. Months before his death from cancer, a professor observed that “the experience of dying…may have been fundamentally about etiquette, about how one deals socially with people who don’t have cancer… a kind of wall seems to persist, a barrier of fear, shame, and perhaps most of all embarrassment” (Bell, 1996, p. 40). A son may know that his father is dying but, thinking that he would break his father’s spirit if he recommended hospice, he encourages third-line treatment. Moral processes (Rai and Fiske, 2011; Tangney et al., 2007), including sympathy and compassion, lead patients and family caregivers to subordinate their own judgement about the most appropriate course of action to someone else’s imagined emotions, life goals, and desires. Pretense (Seale et al., 1997) leads to collusive subversions of the truth in families. We call this phenomenon superficial emotional deference. Given the powerful role of culture in shaping human behavior (Markus and Kitayama, 2010; Stephens et al., 2012), specific family cultures (Kagawa-Singer et al., 2010) will influence how such deference is enacted. As Lown (1999, p. 73) put it, “Doctors, in the words of Reinhold Niebuhr, mean well, do ill, and justify their ill-doing by their well-meaning.” The same is true of patients and caregivers.
The TRIBE Model
Drawing from biopsychosocial (Engel, 1980) and social-ecological (Bronfenbrenner, 1979) approaches to human development, TRIBE offers a social-ecological, contextualist explanation of irrational biomedical exuberance. The model has two parts, depicted in Figures 1 and 2. Figure 1 is an adaptation of a standard social-ecological model based on Bronfenbrenner’s decades of theorizing. The center of the Figure shows the clinical microsystem, which includes clinical teams (physicians, nurses, social workers, pharmacists, medical assistants, office staff, etc.) that provide specialty care for life-threatening illness (e.g., oncology, nephrology, cardiology, emergency, intensive). The microsystem frames all interactions with patients and their families, who (ideally) are at the center of the microsystem. The outer rings are the meso-, exo-, and macrosystems. In TRIBE, the mesosystem refers to other systems that interact with the clinical microsystem; in theory, strengthening these other systems (e.g., primary care) could improve EoL care. The exosystem refers to institutional structures that interact indirectly with the micro- and mesosystems. The Figure depicts institutional arrangements that (unintentionally) undermine the structures and processes in the micro- and mesosystems that could mitigate irrational biomedical exuberance. The macrosystem refers to broader psychocultural beliefs (e.g., belief that complex problems are merely complicated; Rittel and Webber, 1975; Glouberman and Zimmerman, 2004) and structural inequities (e.g., racism, Kendi, 2017) that shape everyday life and affect biomedical exuberance indirectly and insidiously. The chronosystem reminds us that outcomes are historically-contingent, ever-evolving, and affected by chance (Taleb, 2007).
Figure 1. The Social Ecology of Biomedical Exuberance at the End-of-Life.
All microsystem activities aimed at mitigating the harmful effects of DIALs will be hindered or facilitated by activities in the mesosystem (depicted here as mitigating harms), the exosystem (depicted here as both conferring and mitigating harms), and the macrosystem (depicted here as conferring harms). See text and online Appendix for details.
1.5 column
Figure 2. Socioemotional Processes Fueling End-of-Life Care in the Clinical Microsystem.
Clinical Teams: Based on Terror Management Theory, TRIBE presumes that the prospect of death motivates healthcare teams to conform to a biomedical norm of care. Activation of the biomedical norm is accompanied by a defensive process, called worldview defense, which can lead directly to DIALs via procedural conformity to the local biomedical norm of care (Path A) as clinicians “go with the flow” (Renkema et al., 2008) and model themselves after their colleagues. Alternatively, the effect of worldview defense on DIALs may be indirect, through emotion-driven conformity and the activation of moral emotions (e.g., shame), processes (e.g., compassion) and motives (e.g., anticipatory shame-avoidance). In this scenario, clinicians initially resist going with the flow but ultimately conform and capitulate to the biomedical norm.
Families and Patients: Based on Socioemotional Selectivity Theory, TRIBE presumes that patients and members of their social network prioritize socioemotional goals, which precipitates positivity-driven beliefs about prognoses and leads patients to consent to interventions that confer more harm than benefit (Path D). Alternatively, the effect of socioemotional prioritization on DIALs may be indirect, via superficial emotional deference (Paths E and F).
Moral Performance (dotted oval): Both superficial emotional deference and emotion-driven conformity to norms are characterized by assumptions made about someone else’s beliefs or emotions about morally questionable acts. As such, acts of emotional deference and conformity in the EoL setting can be characterized as performative, leading to performative discretionary interventions, such as performative CPR or performative chemotherapy (Paths C and F).
Qualifiers: Terror Management Theory can explain patient and caregiver conformity to local social network norms, and Socioemotional Selectivity Theory can explain clinician deference to patients and caregivers. For simplicity, these processes are not depicted.
2 column
Figure 2 puts the clinical microsystem under a psychological microscope. A life-limiting diagnosis is a complex, intractable, emotion-generating (Ellis et al., 2019) problem. There is no optimal solution, rarely a single goal on which all parties can unambivalently agree, and the swirl of emotion makes it difficult to understand the gravity of the prognosis (Finkelstein et al, 2021; Glare et al., 2003; Malhotra et al., 2019, Loh et al., 2022).
A life-limiting diagnosis elicits two powerful, non-normative terrifying thoughts: thoughts of impending death and thoughts of limited time. Conceptual frames that elucidate how and why treatment decisions are communally “made” as all parties manage uncertainty while contemplating looming death and dwindling time are critical to improving healthcare delivery. Instead of creating a new conceptual frame, we scaffold robustly supported psychological theories of motivation, social behavior, and group processes that are particularly relevant to decision-making in the setting of Western healthcare.
Whereas Terror Management Theory (Greenberg et al., 1986; Greenberg et al., 2014) can illuminate behavior when the prospect of death looms large, Socioemotional Selectivity Theory (Carstensen, 2006; Carstensen et al., 1999) offers insights into behavior when individuals are faced with the prospect of imminent loss. Whereas Socioemotional Selectivity Theory is particularly well-suited to explaining superficial emotional deference within families, Terror Management Theory can explain the procedural conformity behavior that sustains practice norms (Barnato, 2017; Barnato et al., 2015; Barnato et al., 2014; Kaufman et al., 2004; Knutzen et al., 2020; Molitor, 2018).
Terror Management Theory: Conformity on Clinical Teams
Terror Management Theory (Greenberg et al., 1986) builds on Ernest Becker’s Pulitzer-prize winning book, The Denial of Death. Becker was a cultural anthropologist whose work was influenced by Sigmund Freud and other psychoanalytic theorists. Terror Management Theory has had a sustained influence in the fields of social, organizational, clinical and health psychology over the past three decades, but has rarely been applied to healthcare utilization (Arndt and Goldenberg, 2017; Goldenberg and Arndt, 2008; Solomon and Lawlor, 2011). The theory outlines what happens when people experience “mortality salience” – the sense of terror engendered by the prospect of death. People experience death anxiety consciously or nonconsciously upon exposure to a mortality cue. Such cues are episodically present in everyday experience (e.g., news) and in the built environment (e.g., cemeteries), but they abound in hospitals and are pervasive in specialty settings where dying patients are treated, such as cancer centers, dialysis clinics, or intensive care units. A key concept in Terror Management Theory is worldview defense (Figure 3), a mechanism by which people maintain their self-esteem while under threat of annihilation by adhering to a belief system that confers a sense of meaning, order, purpose, or solidarity. Worldview defense following exposure to a mortality cue was initially shown to explain derogatory attitudes toward sexual immorality and has subsequently been shown to be related to attitudes toward other divisive topics, including racism (Greenberg et al., 2001).
Figure 3. Irrational Exuberance on Clinical Teams: Conforming to the Biomedical Norm.
Worldview defense is a mechanism by which people maintain their self-esteem when exposed to reminders of death. Worldviews (i.e., ideologies, paradigms) that promote a sense of meaning and group connection are elevated. In healthcare settings, conformity on clinical teams is motivated by cognitive processes (e.g., decreased receptivity to threatening information, desire to identify with the in-group) that prioritize technical over emotional knowledge (Zussman, 1992). These cognitive processes are reinforced by mantras and metaphors (Reisfield and Wilson, 2004).
1 column
People tend to deny or diminish the prospect of death and suppress death-related thoughts, often with the encouragement of psychocultural ideologies, such as biomedicalism, religion, or racism. Physicians who are more comfortable with biomedicalism prescribe more DIALs to dying patients (Duberstein et al., 2019); dying patients who are more religious tend to receive more DIALs as they pray for a miracle (Shinall et al., 2014); Black patients receive more DIALs for reasons that remain unknown, but structural racism (Bailey et al., 2021) and racist stereotypes about Blacks’ treatment preferences might be implicated (Koenig and Gates-Williams, 1995).
The motivating effects of death anxiety on social behavior have been studied in social psychology laboratories. It would be unwise to ignore the implications for EoL care of these laboratory tests of Terror Management Theory, just as it would be imprudent to ignore the implications for human genetics of Drosophila research in genetics laboratories (Ellis et al., 2019; Ferrer et al., 2016). Still, it should be acknowledged that the theory is controversial, due to failed replications (Klein et al., 2019) and conceptual disagreements (Kirkpatrick and Navarrete, 2006; Tritt et al., 2012), particularly about the status of fear of death as a motivator of conformity behavior (Kirkpatrick and Navarrete, 2006; Navarrete et al., 2004). These concerns have been successfully rebutted (Chatard et al., 2020; Chen et al., 2022; Pyszczynski et al., 2015).
Research on Terror Management Theory typically involves exposing participants to a mortality cue and then observing participant behavior in the laboratory. These studies show that conformity behavior increases after exposure to a mortality cue. We theorize (Figure 2) that conformity to local norms can lead directly to DIALs by default via procedural conformity (Path A); alternatively, the effect may be indirect, via emotion-driven conformity (Paths B and C). The distinction between procedural vs. emotional subtypes of conformity is well-established (Schwartz et al., 2012).
Procedural conformity on clinical teams.
Without mechanisms to motivate conformity, organizations fail. Interpretation of data from decades of conformity experiments (Asch, 1955; Bond and Smith, 1996) typically presumes that people conform because they are motivated to behave in a manner that increases their psychological similarity to the in-group. Intuitively, it might seem as though conformity to norms is simply a benign, non-defensive, behavioral process. Terror Management Theory suggests otherwise.
In settings where death is a potent stimulus (e.g., ICU, cancer center), conformity to a norm serves as a defensive reaction to threat. In Figure 3, we show that worldview defense (Arndt et al., 2009; Martens et al., 2011; Vess et al., 2009) can lead to DIALs via decreased receptivity to both threatening information (Greenberg et al., 2014; Landau et al., 2004) (e.g., “the patient is dying”) and to alternative courses of action (“stop the current treatment plan”).
Well-controlled experiments have shown that exposure to mortality cues, even when outside of conscious awareness (Greenberg et al., 1994), activates neural mechanisms in a span of milliseconds (Dor-Ziderman et al., 2019) along with personally-relevant ideologies (e.g., biomedicalism) that motivate people to conform to worldviews associated with the ideology.
Terror Management Theory suggests that conformity to a psychoculturally-enabled biomedical norm (“more is better”, “doing less means giving up”) would mitigate death anxiety in clinicians. This idea, which has been discussed in the clinical literature for decades (Menzies, 1960), has experimental support. In one study (Solomon and Lawlor, 2011), researchers asked medical students to describe the emotions aroused by the thought of their own death (mortality cue) or a control cue. Participants then read about a hypothetical patient whose advance directive explicitly stated that he did not want any aggressive, disease-directed treatment. The students who had been asked to contemplate their own death expressed greater support for aggressive treatment. The authors concluded that clinicians “may strive to keep their patients alive to assuage their own death fears” (Solomon and Lawlor, 2011, p. 103).
The TRIBE model presumes that conformity to the biomedical norm, even in circumstances when such conformity is counterproductive, is enabled by unexamined death anxiety in clinicians (Menzies, 1960; Mount, 1986). There is support for this idea, too. (Eggerman and Dustin, 1986; Rodenbach et al., 2016; Schulz and Aderman, 1979). One study showed that when clinicians are more comfortable with the biomedical norm, their patients are more likely to receive DIALs (Duberstein et al., 2019). This might be especially true when clinicians practice a religion (Shinall et al., 2014). Other research has shown that clinicians with greater death anxiety are more likely to have negative attitudes toward disclosure of a poor prognosis (Cialkowska-Rysz and Dzierzanowski, 2013; Cochrane et al., 1991) and palliative care (Thiemann et al., 2015).
Emotion-driven conformity on clinical teams.
In EoL settings, emotion-driven conformity occurs when motivated by conscious fear of ridicule and ostracism or the conscious experience of moral emotions (e.g., shame, guilt, contempt). Meier’s (2014) description of how a physician candidly revealed that he prescribed a futile treatment because he was concerned about what others would think of him starkly illustrates that patients receive treatments for reasons other than their underlying illness (Bluhm et al., 2016; Jackson et al., 2008). It also exemplifies how clinicians conform to a norm after contemplating how their actions might be perceived by others. Nonconformity exacts a penalty, including ridicule and derogation (Arndt et al., 2009; Burke et al., 2010; Renkema et al., 2008). Such derogation can occur on care teams, where disagreements around a plan of action are common (Adamy and McGinty, 2012).
Socioemotional Selectivity Theory: Superficial Emotional Deference in Patients and Caregivers
Socioemotional Selectivity Theory (Carstensen, 2006; Carstensen et al., 1999) was developed in the 1980s in response to the then influential belief that age-related social withdrawal was a reaction to preconscious awareness of impending death and biological change. Carstensen and colleagues countered that this pattern of withdrawal was, instead, motivated by perceived changes in time horizon (Carstensen, 1995; Lang, 2001) and the concomitant prioritization of emotional (vs. instrumental) goals, the desire to spend time participating in enjoyable activities and avoiding unpleasant situations. With aging, social networks become smaller in part because older adults have learned to retain only the most emotionally meaningful relationships.
Whereas future-oriented instrumental goals (e.g., achieving the competencies needed for career aspirations) are prioritized in early adulthood, present-oriented socioemotional goals (e.g., spending meaningful time with grandchildren) become increasingly prioritized in middle age (Carmichael et al., 2015) when people experience a sense of time running out. Changes in time horizon are most obvious in older adulthood as people gradually appreciate that their lifespans are limited and earthly time is finite. However, beyond aging, there are other elicitors of changes in time horizon, such as life-limiting illness (Sullivan-Singh et al., 2015).
Laboratory studies suggest that time horizon changes lead to general motivational preferences for positive over negative stimuli (Mather and Carstensen, 2005). This positivity effect (or bias) is remarkably robust (Reed et al., 2014) and has been observed in studies of basic psychological processes, including attention (Samanez-Larkin et al., 2009) and memory (Mikels et al., 2005) as well as in studies of more complex processes, including healthcare decision-making (Löckenhoff and Carstensen, 2007, 2008). The positivity effect is presumed to be nonconsciously motivated by the desire for positive, hedonic experiences; it has been observed in laboratory tasks that require judgments made in approximately 500 milliseconds (Isaacowitz et al., 2009).
Positivity can explain the seemingly counterintuitive finding that emotional well-being increases (Blanchflower and Oswald, 2008; Carstensen et al., 2011) or remains stable (Scheibe and Carstensen, 2010) across the lifespan and is rarely compromised by disability (Albrecht and Devlieger, 1999). The positivity effect can explain why some individuals are vulnerable to deceit, including financial fraud (Scheibe and Carstensen, 2010), and why some may be unduly swayed (Tanco et al., 2015) by positively-valenced health communications, such as “Your scans look great!” (Good et al., 1990; Wolf and Wolf, 2013). Positivity can explain why prognostic understanding is poor (Finkelstein et al., 2021; Malhotra et al., 2019), as it motivates individuals to ignore, discount, or forget negatively-valenced prognostic communications. Positivity effects might be eliminated in high stakes situations, but there is evidence to the contrary (Löckenhoff and Carstensen, 2007).
Based on Socioemotional Selectivity Theory, we hypothesize that a constricted time horizon motivates a positivity effect, which leads people to believe that their prognoses are better than they actually are, and this in turn incentivizes DIALs (Figure 2, Path D). Alternatively, as discussed below, the effects of socioemotional prioritization on DIALs may be indirect, via superficial emotional deference, the subordination of one’s own judgment about the most appropriate course of action to someone else’s imagined, or anticipated, emotions, goals, or wishes (Figure 2, Paths E and F).
Superficial emotional deference within families.
Illness and aging motivate people to regulate their emotions by not fully engaging in emotionally taxing situations, like healthcare visits (Charles et al., 2009). Socioemotional Selectivity Theory suggests that, when family members accompany seriously ill patients to healthcare visits (Wolff and Roter, 2011), the family members are often providing emotional and cognitive support, in addition to instrumental support (e.g., transportation). When patients defer decisions to family caregivers, they do so both to regulate their own emotions and convey their moral concern about the caregiver’s emotional welfare (Maxfield et al., 2014; Maxfield et al., 2007). For example, dying patients may want to prepare for death but opt for experimental treatment out of a desire to please family members who implore them to keep fighting (Hoerger et al., in press). (They may consent to procedures to please their physicians as well (Saeed et al., 2020), but our focus here is family dynamics.)
If it is difficult to forecast one’s own ability to adjust to misfortune (Hoerger et al., 2012; in press; Smith et al., 2009), it is near impossible to accurately assess another party’s capacity to do so. Without satisfactory information about the other’s emotions and beliefs, one must leap to conclusions, “fill in the blanks” and lean on default assumptions and heuristics to fill the void. In most settings, the default is “more treatment” (Ellen et al., 2020; Le Fanu, 2012; Nassery et al., 2015; Rosenthal, 2017; Segal et al., 2015). As Kaufman, Shinn, and Russ (2004, p. 9) stated, “biomedical technique provides the most powerful logic, the most pervasive method” that patients and caregivers can show each other that they truly care about each other.
Superficial Emotional Deference and Emotion-Driven Conformity: Moral Performance in Healthcare
Both superficial emotional deference in families and emotion-driven conformity to local professional norms are characterized by assumptions one party makes about another’s attitudes, beliefs, or emotions about morally questionable acts. These assumptions are rarely tested, let alone verified. As such, some moral acts in the EoL setting can be characterized as performative (Butler, 1988) (Figure 2) and thus often not constitutive of core, essentialist, abiding preferences and values. Yet values and preferences are presumed to be foundational in EoL care (Institute of Medicine, 2015; Wolf et al., 2015).
The presence of performativity in EoL care raises troubling ethical questions about the ontological status of values and preferences in healthcare, clinician concealment of prognostic information (often nonconscious), clinician engagement in other performative acts (prescribing, intervening; often nonconscious), and the rationalist elicitation of so-called values and preferences to inform treatment decision-making (Drought and Koenig, 2002; Eyal and Sjöstrand, 2020; Fagerlin and Schneider, 2004; Kaufman et al., 2004; Mack and Smith, 2012; Panagopoulou et al., 2008; Wirtz et al., 2006). The activation and anticipation of painful emotions could explain why clinicians conceal prognostic information (Mack and Smith, 2012; Panagopoulou et al., 2008), and why, in contrast to idealized, rational models of EoL care, embodied in advance care planning, values-driven preferences must inexorably be constituted “on the spot” (Kaufman et al., 2004, 2006) or “in the moment” (Sudore and Fried, 2010). It is thus hardly surprising that rationalist approaches to EoL care often fail (Fagerlin and Schneider, 2004; Morrison, 2020), and that legal documents such as advance directives, while frequently helpful (Silveira et al., 2010), are ignored and become de facto works of fiction.
Compelling case reports and qualitative studies suggestive of moral performance in EoL care have been published (Fallowfield et al., 2002; Meier, 2014). Performative CPR was considered ethical until the 1980s (Lantos and Meadow, 2011). Likewise, the near absence of truth-telling in cancer care settings (Oken, 1961) until recent decades is partially a product of superficial emotional deference (Fallowfield et al., 2002). It was commonly assumed that white lies of omission, intended to not break the patient’s spirit, were relatively harmless; there is scant evidence for the validity of that assumption (Fallowfield et al., 2002; Levine et al., 2018) and patient satisfaction increases when physicians are forthcoming about prognosis (Fenton et al., 2018). In fact, white lies can be harmful to patients (Levine et al., 2018), patient satisfaction with care declines when patients perceive that physicians are emotionally inauthentic (Yagil and Shnapper-Cohen, 2016) and offering false hopes to patients could engender moral distress in clinicians (Saeed et al., 2021).
We are not suggesting that moral performance on the part of patients, caregivers, or clinicians is inherently bad or reflects an inauthentic, “false” self. Rather, moral performance in Western EoL settings is due, in part, to the terrifying socioemotional context of EoL care, the prospects of limited time and imminent death. Sometimes, patients receive treatments, interventions, and procedures because clinicians feel compelled to conform to a norm, and patients and caregivers feel emotionally moved to go with the flow in the service of the moral emotions, caring and love. These dilemmas cannot be addressed without first being identified, labelled, and conceptualized.
DISCUSSION
The TRIBE model synthesizes two established psychological theories to explain why dying patients receive DIALs despite repeated calls for alternative care models (Committee on Quality of Health Care in America and Institute of Medicine, 2001; Engel, 1992; Lown, 1999) and numerous interventions designed to improve EoL care over the past quarter century (Anonymous, 1995). After outlining future research directions, we call for empirically-informed psychological innovation in education and policy.
Future research directions:
TRIBE complements other conceptual models of EoL utilization (Kelley et al., 2010; Prigerson and Maciejewski, 2012) and overtreatment more broadly (Nassery et al., 2015) by encouraging researchers to consider conformity processes and moral emotions in healthcare settings. Whereas prior frameworks (Kelley et al., 2010; Prigerson and Maciejewski, 2012) can lead to the development of novel individual-level interventions, TRIBE has implications for the development of psychologically-informed dyadic, triadic, family, and organizational interventions to decrease the harms of overtreatment in EoL settings and other treatment settings where the prospect of death looms large. New interventions are needed to optimize EoL care, given that prior interventions have repeatedly failed (Abedini et al., 2019). Ideally, future intervention research would be informed by a theory of DIALs (e.g., TRIBE) as well as a theory of implementation (e.g., institutional theory; Birken et al., 2020; DiMaggio and Powell, 1983). Future intervention research should be conducted in diverse cultural settings, including diverse family sociocultural contexts and different treatment delivery settings (e.g., academic vs. community care settings). Researchers must acknowledge that healthcare is offered by groups of people (clinicians working on teams within organizations) to groups of people (patients in social and kinship networks) and that clinicians, teams, and organizations respond to emotional pressures related to maintaining their legitimacy. Birken et al. (2020) identify three such pressures: regulatory, mimetic, and, of greatest relevance to TRIBE, normative.
In Table 2, we identify two normative processes that, if appropriately modified, could lead to improvements in the use of DIALs and EoL care, clinician conformity to the biomedical norm and superficial emotional deference. For example, innovative dyadic (patient-caregiver), triadic (patient-caregiver-clinician) and family “emotional competency” interventions are needed that center the role of moral emotions and acknowledge the potential role of superficial emotional deference and performativity in EoL care (Hoerger et al., in press).
Table 2.
Norm-Modifying Interventions Suggested by the TRIBE Model
| Modifiable normative process | Interventions | |
|---|---|---|
| 1) Clinician conformity | 1a) Emotion-driven conformity |
|
| 1b) Automatic (Procedural) conformity |
|
|
| 2) Superficial emotional deference | 2a) Patient and caregiver superficial emotional deference to each other |
|
| 2b) Superficial emotional deference in the patient/caregiver-clinician relationship |
|
|
Beyond recommending intervention research, we offer three substantive directions for future scholarship on the implications of socioemotional processes for EoL healthcare delivery (Table 3). First, there is a pressing need to examine clinician conformity to potentially harmful norms. Mixed methods research and ethnographic research is needed to explore how and why some clinicians, care teams, specialties, or sub-specialties are more likely to conform to unhelpful local norms than others (Knutzen et al., 2020); research on the effects of clinician age, race, ethnicity and gender would be helpful. Theory (Menzies, 1960) and research (Solomon and Lawlor, 2011) suggest that clinicians embrace the biomedical norm because it quells clinician anxiety, including death anxiety; survey and mixed methods research on this question are needed. There is some evidence to suggest that race differences in DIALs are due to ICU culture (Barnato et al., 2006; Barnato et al., 2007; Quill et al., 2014); shared stereotypes about group preferences might also be relevant (Koenig and Gates-Williams, 1995). For example, based on the research literature on race differences in so-called preferences, clinicians may stereotype Black patients and think that all Black patients want aggressive interventions. Consequently, in some Western settings, White clinicians may be less likely to initiate a difficult conversation with Black patients or family members about the potential harms of the aggressive intervention because of this stereotype. Phenomenological, ethnographic, and quantitative research is needed on the contributions of shared stereotypes to patient care.
Table 3.
Research Questions Generated by the TRIBE Model
| Research topic | Research questions |
|---|---|
| Clinician conformity |
|
| Patient and caregiver superficial emotional deference |
|
| Moral emotions in treatment decision-making |
|
Second, there is a need for programmatic research on patient and caregiver superficial emotional deference. Qualitative research would be particularly helpful. Although there have been numerous studies on negative emotions (e.g., anxiety, sadness) in EoL settings, there has been a dearth of quantitative and qualitative research on moral emotions (Ferrer et al., 2016). Third, a comparable program of research is needed on the role of the moral emotions in patient-clinician communication and treatment decision-making. TRIBE focuses on interactions within care teams and within patients’ networks that have historically been neglected in models of healthcare utilization. However, the TRIBE model also has implications for research on health communication and decision-making in clinical settings.
Psychological innovation in education and policy: Recognizing and responding to the biomedical bias.
A former editor of the New England Journal of Medicine once opined, tongue-in-cheek, that “only those who have been hospitalized…[should] be admitted to medical school” (Ingelfinger, 1980). He assumed that the first-hand experience of hospitalization would boost clinician empathy and mitigate the magnetic-pull of the biomedical norm. He was probably right, but it would be far more efficient to modify the processes by which clinicians are educated and professionally acculturated.
Curricular changes and the growth of palliative care programs bode well for decreasing the harmful effects of DIALs (Denney-Koelsch et al., 2018). As others have suggested (Berwick and Finkelstein, 2010; Eisenberg, 1988), immersion in the social, behavioral, and organizational sciences would prepare the healthcare workforce to manage and respond to intractable clinical problems like those that arise at the EoL.
Exposing trainees to coursework in these areas is necessary, but not sufficient. Fostering the development of emotional competencies (Barrett, 2017), particularly with respect to the moral emotions (Haidt, 2003; Tangney et al., 2007), is critical. The hidden curriculum (Branch Jr et al., 2017), and its attendant biomedicalist biases, encourages detached concern and denial of feeling while teaching students to view themselves as technically-competent fixers whose sense of identity (Cruess et al., 2015; Gawande, 2017) derives largely from taking action (Coulehan, 2009; Fox and Lief, 1963; Menzies, 1960; Mount, 1986). Licensure exams and the approach to healthcare financing reinforce the implicit connection between competence and action-oriented procedures, as opposed to cognitive and emotional labor (Crowley et al., 2020).
To foster cultural humility, healthcare professionals should be made aware of the implicit, automatic (vs. deliberate), nonconscious bias favoring biomedicalism in their training. Most patients and families receive care in clinical microsystems that are affected directly and indirectly by the culture of biomedicalism– for better and worse. Clinicians who are trained to gain insight into how and why their clinical decision-making might be influenced by macrosystem forces, such as structural racism (Figure 1), that perpetuate a culture of biomedicalism that fosters reductionism and essentialism (Engel, 1992; Dar-Nimrod and Heine, 2010) will be positioned to offer higher quality care – and perhaps advocate for system change. To further foster cultural humility, healthcare professionals should be trained to understand the limits of clinical prognostication (Glare et al., 2003), which is a product of the decades-long marginalization of prognostication in clinical science (Christakis, 1997) and a culture of optimism.
To help learners appreciate some of the biases and structures that sustain them, we recommend group interventions that focus on identity formation (Cruess et al., 2015), perhaps integrating communication principles (Epner and Baile, 2014); mindfulness exercises; and candid discussions of death and, when appropriate, interventions for death anxiety (Menzies et al., 2018). These interventions can help learners ranging from medical students in longitudinal, integrated, community-based clerkships (Hirsh et al., 2012) to seasoned clinicians participating in Balint groups (Epner and Baile, 2014) or Schwartz rounds (Lown and Manning, 2010) gain insight into how moral emotions and motives affect how they interact with patients and influence patient outcomes. They will come to view skilled communication as an active intervention that can be delivered with varying degrees of expertise. When combined with interventions to mitigate unhelpful norms at the point-of-care and decrease performativity in families and in the patient-caregiver-clinician relationship (Table 2), improvements in EoL care and outcomes could be expected.
Caveats and qualifiers.
First, TRIBE integrates two psychological theories that have been extensively tested in controlled laboratory settings, but health decisions cannot be readily simulated in laboratory settings. Second, EoL care involves multiple parties who occupy multiple roles (patient, wife, daughter, churchgoer) in multiple contexts (families, church, work). Membership in one or more groups, be it a family, a religion, a profession, a political party or an advocacy group poses challenges, as norms across roles and contexts may be incompatible. As such, healthcare professionals are not just clinicians but members of a profession or a religion. TRIBE, like most prior conceptual models, ignores role multiplicity and intersecting identities. Third, TRIBE ignores power hierarchies in conformity, but it may be psychologically easier for established attending physicians to question the biomedical norm than for nurses or residents to do so; indeed, more experienced physicians are less likely to offer DIALs (Frost et al., 2011). Fourth, TRIBE focuses on ways to avoid “bad deaths,” not how “good deaths” (Steinhauser et al., 2000) may be engendered. Fifth, TRIBE is a contextualist social-ecological conceptual model, not a formal theory. Like similar models (Heise, 1998; Kaufman et al., 2014; Nelson et al., 2002), it can inform implementation science, which, at its heart, is a science of sociocultural and systemic change (Hawe et al., 2009; Miller et al., 2019). As such, TRIBE can stimulate the development of novel clinical and health services interventions as well as curricular innovations in clinical education. Although causal elements of the model can and should be tested in isolation, TRIBE is not designed to be formally evaluated using methods of causal inference. Sixth, Terror Management Theory is well-suited to one of our goals, namely the explanation of conformity on clinical teams. It is a controversial theory, and may not explain findings that could emerge in future research, such as gender differences in clinician conformity to biomedical norms. Researchers interested in studying conformity in healthcare settings might also want to draw from evolutionary (Griskevicius et al., 2006) and coalitional psychology (Navarrete et al., 2004; Navarrete and Fessler, 2005).
Finally, this introduction of the TRIBE model focused primarily on the clinical microsystem, not broader sociocultural, political and economic forces and power structures operating in the meso-, exo-, or macro-levels of the healthcare ecosystem. The United States is the only country in the Organization of Economic Cooperation and Development without universal health insurance. It is also one of the few countries worldwide that allows the pharmaceutical industry to advertise directly to consumers. Forceful messages incentivizing the use of more treatments, interventions, procedures and services are propagated by other entities in the medical-industrial complex, including the healthcare (Vater et al., 2014), medical device, and private equity industries (Rosenthal, 2017). The United States has repeatedly resisted calls for federally-supported interventions to improve health, including universal healthcare financing (Quadagno, 2004). The resistance is not surprising; for decades, the American Medical Association has fiercely opposed national health insurance. Efforts to stop the runaway train of irrational biomedical exuberance must countenance and remove the perverse financial incentives that enrich entities in the exosystem (including professional associations) while bankrupting American families (Himmelstein et al., 2019). By elevating the role of socioculturally motivated moral emotions and processes in legitimizing and sustaining technological imperatives (Fuchs, 1968) that contribute to overtreatment worldwide (Crowley et al., 2020; Elshaug et al., 2017), social scientists could develop new interventions to subvert unhelpful biases favoring biomedicalism and thereby lessen the burden of DIALs on individuals, families, society, and future generations. A new evidence base would inform policy that leads to broader psychocultural change in healthcare delivery and financing.
CONCLUDING COMMENTS
Two foundational facts have been marginalized in the social science literature on healthcare utilization: 1) healthcare is offered by groups of people to groups of people, and 2) socioemotional processes, including the moral emotions, influence the behavior of people in groups. By specifying that both the prescription and receipt of discretionary interventions, treatments, and procedures reflect socioemotional processes, TRIBE underscores the critical need for psychological innovation in healthcare delivery and the education of health professionals. We hope that this contribution motivates creative, multifaceted improvements in research, education, clinical care, and policy to improve healthcare delivery, especially for individuals and families with advanced, life-limiting disease.
Online Appendix
Figure 1 suggests that activities in the clinical microsystem aimed at mitigating the harmful effects of DIALs will be hindered or facilitated by other entities in the social-ecological landscape of healthcare delivery. Some data support the idea that a more robust mesosystem could mitigate the harms of DIALs (Hanson et al., 2017; Seow et al., 2014), but there is a need for more research on this issue. The exosystem includes a mix of entities that either facilitate the harmful effects of DIALs (e.g., private equity; Braun et al., 2021) or both facilitate and mitigate the harmful effects of DIALs. University-owned healthcare systems and their affiliated academic health centers are prototypical “profitable nonprofits,” as some system components (e.g., palliative care) mitigate harms created by other components. Depicted in the macrosystem are psychocultural beliefs that facilitate harmful practices at the end-of-life. Our focus is the United States in the early 21st century. Although some of these psychocultural beliefs will not be particularly relevant outside of that context, others (e.g., death denialism) are presumed to be universal.
Beginning in the middle of the19th century in the United States, a culture of narcissism (Lasch, 1979) sprouted on the culture of individualism (Bellah,1985). Individualism itself is a relatively recent cultural invention; the word did not appear in the Oxford English Dictionary until 1835 (Bellah,1985). Narcissism has steadily worsened over the past few decades (Twenge et al., 2008). Psychocultural narcissism motivates clinicians to offer “heroic” interventions in the service of self-aggrandizement and could potentially motivate patients and families to seek interventions as well.
A culture of optimism (Ehrenreich, 2010) is common in capitalist countries where risky gambles (e.g., venture capital, stock market “investments”) promise huge payoffs. Kahneman (2011) described optimism as the “engine of capitalism.” Psychocultural optimism contributes to poor prognostic understanding and motivates treatment risk-taking against the odds. Risk taking at the end-of-life is reinforced because previously incurable diseases occasionally become curable (Curti, 2018).
A culture of death denialism (Becker, 1973) contributes to low levels of death literacy and death acceptance and high levels of death anxiety.
A culture of religious fundamentalism (Hunter, 1991) sacralizes (Weber, 2002) healthcare debates and frames efforts to mitigate harmful DIALs as an abuse of power that undermines basic religious rights.
A more is better culture contributes to the biased beliefs that spending more on healthcare leads to better outcomes, and that more intensive, invasive interventions are inherently better than less intensive interventions (Fagerlin et al., 2017; Verkerk et al., 2021).
A newer is better culture motivates the biased belief that untested, unproven interventions will outperform established interventions (Carman et al., 2010).
An action-oriented, problem-solving culture motivates the biased and misguided belief that complex, intractable problems can be solved (Rittel and Webber, 1975; Glouberman and Zimmerman, 2004).
A conformity culture (Fromm, 1941/1969; 1970) or, less benignly, a stupidity culture (Alvesson and Spicer, 2016) makes it difficult to advocate for change in the healthcare workplace or actively work for systemic change in the exosystem.
Adverse effects of psychocultural beliefs are amplified in groups that have historically been subjected to structural and legal discrimination (Kendi, 2017).
This Figure illustrates how systems interact across levels of analysis to produce adverse outcomes of end-of-life care. It is offered here for illustrative purposes and to stimulate research and educational innovations. For example, as health care professionals strive for cultural humility, the Figure suggests that humility requires not only self-reflection on one’s positionality and privilege but also an appreciation of the myriad influences at multiple levels of analysis both on the provision of clinical care and health outcomes.
Footnotes
Declarations of interest: none
References
- Abedini NC, Hechtman RK, Singh AD, Khateeb R, Mann J, Townsend W, et al. , 2019. Interventions to reduce aggressive care at end of life among patients with cancer: a systematic review. Lancet Oncol. 20, e627–e636. [DOI] [PubMed] [Google Scholar]
- Adamy J, McGinty T, 2012. The crushing cost of care. Wall Street Journal, 6th July. C1. [Google Scholar]
- Ajzen I, 1991. The theory of planned behavior. Organ. Behav. Hum. Decis. Process. 50, 179–211. [Google Scholar]
- Albrecht GL, Devlieger PJ, 1999. The disability paradox: high quality of life against all odds. Soc. Sci. Med. 48, 977–988. [DOI] [PubMed] [Google Scholar]
- Aldridge MD, Bradley EH, 2017. Epidemiology and patterns of care at the end of life: rising complexity, shifts in care patterns and sites of death. Health Aff (Millwood). 36, 1175–1183. [DOI] [PubMed] [Google Scholar]
- Almoosa KF, Luther K, Resar R, Patel B, 2016. Applying the New Institute for Healthcare Improvement Inpatient Waste Tool to identify “waste” in the intensive care unit. J. Healthc. Qual. 38, e29–e38. [DOI] [PubMed] [Google Scholar]
- Andersen R, Newman JF, 1973. Societal and individual determinants of medical care utilization in the United States. Milbank Mem. Fund Q. Health Soc, 95–124. [PubMed] [Google Scholar]
- Andersen RM, 1995. Revisiting the behavioral model and access to medical care: Does it matter? J. Health Soc. Behav. 36, 1–10. [PubMed] [Google Scholar]
- Angell M, Relman A, 2002. Patients, profits, and American medicine: Conflicts of interest in the testing and marketing of new drugs. Daedalus. 131, 102–111. [Google Scholar]
- Anhang Price R, Elliott MN, Zaslavsky AM, Hays RD, Lehrman WG, Rybowski L, et al. , 2014. Examining the role of patient experience surveys in measuring health care quality. Med. Care Res. Rev. 71, 522–554. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Anonymous, 1995. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 274, 1591–1598. [PubMed] [Google Scholar]
- Arndt J, Goldenberg JL, 2017. Where health and death intersect. Curr. Dir. Psychol. Sci. 26, 126–131. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Arndt J, Vess M, Cox CR, Goldenberg JL, Lagle S, 2009. The psychosocial effect of thoughts of personal mortality on cardiac risk assessment. Med. Decis. Making. 29, 175–181. [DOI] [PubMed] [Google Scholar]
- Asch SE, 1955. Opinions and social pressure. Sci. Am. 193, 31–35. [Google Scholar]
- Bailey ZD, Feldman JM, Bassett MT, 2021. How structural racism works — Racist policies as a root cause of U.S. racial health inequities. N. Engl. J. Med. 384, 768–773. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bandura A, 2001. Social cognitive theory: An agentic perspective. Annu. Rev. Psychol. 52, 1–26. [DOI] [PubMed] [Google Scholar]
- Barnato AE, 2017. Challenges in understanding and respecting patients’ preferences. Health Aff. 36, 1252–1257. [DOI] [PubMed] [Google Scholar]
- Barnato AE, Berhane Z, Weissfeld LA, Chang CC, Linde-Zwirble WT, Angus DC, et al. , 2006. Racial variation in end-of-life intensive care use: a race or hospital effect? Health Serv. Res. 41, 2219–2237. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Barnato AE, Chang CC, Saynina O, Garber AM, 2007. Influence of race on inpatient treatment intensity at the end of life. J. Gen. Intern. Med. 22, 338–345. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Barnato AE, Cohen ED, Mistovich KA, Chang CC, 2015. Hospital end-of-life treatment intensity among cancer and non-cancer cohorts. J. Pain Symptom Manage. 49, 521–529.e525. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Barnato AE, Mohan D, Lane RK, Huang YM, Angus DC, Farris C, et al. , 2014. Advance care planning norms may contribute to hospital variation in end-of-life ICU use: a simulation study. Med. Decis. Making. 34, 473–484. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Barrett LF, 2017. How emotions are made: The secret life of the brain. Houghton Mifflin Harcourt, New York. [Google Scholar]
- Bartels SJ, Naslund JA, 2013. The underside of the silver tsunami--older adults and mental health care. N. Engl. J. Med. 368, 493–496. [DOI] [PubMed] [Google Scholar]
- Beck B, 2009. A slow-burning fuse: A special report on ageing populations. The Economist, 27th June. 1–3. [Google Scholar]
- Bell MD, 1996. Magic time; observations of a cancer casualty. The Atlantic Monthly, 1st December. 278(6), 40–43. [Google Scholar]
- Berwick DM, Finkelstein JA, 2010. Preparing medical students for the continual improvement of health and health care: Abraham Flexner and the new “public interest”. Acad. Med. 85, S56–65. [DOI] [PubMed] [Google Scholar]
- Birken SA, Haines ER, Hwang S, Chambers DA, Bunger AC, Nilsen P, 2020. Advancing understanding and identifying strategies for sustaining evidence-based practices: a review of reviews. Implement Sci. 15, 1–13. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Blanchflower DG, Oswald AJ, 2008. Is well-being U-shaped over the life cycle? Soc. Sci. Med. 66, 1733–1749. [DOI] [PubMed] [Google Scholar]
- Bluhm M, Connell CM, De Vries RG, Janz NK, Bickel KE, Silveira MJ, 2016. Paradox of prescribing late chemotherapy: Oncologists explain. J. Oncol. Pract. 12, E1006–E1014. [DOI] [PubMed] [Google Scholar]
- Bond R, Smith PB, 1996. Culture and conformity: A meta-analysis of studies using Asch’s (1952b, 1956) line judgment task. Psychol. Bull. 119, 111–137. [Google Scholar]
- Bradley EH, McGraw SA, Curry L, Buckser A, King KL, Kasl SV, et al. , 2002. Expanding the Andersen model: the role of psychosocial factors in long-term care use. Health Serv. Res. 37, 1221–1242. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Branch WT Jr, Frankel RM, Hafler JP, Weil AB, Gilligan MC, Litzelman DK, et al. , 2017. A multi-institutional longitudinal faculty development program in humanism supports the professional development of faculty teachers. Acad. Med. 92, 1680–1686. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bronfenbrenner U, 1979. The Ecology of Human Development: Experiments by Nature and Design: Harvard University Press, Cambridge. [Google Scholar]
- Buiting HM, Rurup ML, Wijsbek H, van Zuylen L, den Hartogh G, 2011. Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study. BMJ. 342, d1933. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Burke BL, Martens A, Faucher EH, 2010. Two decades of Terror Management Theory: A meta-analysis of mortality salience research. Pers. Soc. Psychol. Rev. 14, 155–195. [DOI] [PubMed] [Google Scholar]
- Butler J, 1988. Performative acts and gender constitution: An essay in phenomenology and feminist theory. Theatre Journal. 40, 519–531. [Google Scholar]
- C-TAC, 2019. The ACT IndexSM A national evaluation of advanced illness care. 1299 Pennsylvania Avenue NW Suite 1175 Washington, DC 20004: C-TAC. [Google Scholar]
- Carmichael CL, Reis HT, Duberstein PR, 2015. In your 20s it’s quantity, in your 30s it’s quality: The prognostic value of social activity across 30 years of adulthood. Psychol. Aging. 30, 95–105. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Carstensen LL, 1995. Evidence for a life-span theory of socioemotional selectivity. Curr. Dir. Psychol. Sci. 4, 151–156. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Carstensen LL, 2006. The influence of a sense of time on human development. Science. 312, 1913–1915. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Carstensen LL, Isaacowitz DM, Charles ST, 1999. Taking time seriously: A theory of socioemotional selectivity. Am. Psychol. 54, 165–181. [DOI] [PubMed] [Google Scholar]
- Carstensen LL, Turan B, Scheibe S, Ram N, Ersner-Hershfield H, Samanez-Larkin GR, et al. , 2011. Emotional experience improves with age: evidence based on over 10 years of experience sampling. Psychol. Aging. 26, 21–33. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Charles ST, Piazza JR, Luong G, Almeida DM, 2009. Now you see it, now you don’t: age differences in affective reactivity to social tensions. Psychol. Aging. 24, 645–653. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Chatard A, Hirschberger G, Pyszczynski T, 2020. A word of caution about many labs 4: If you fail to follow your preregistered plan, you may fail to find a real effect. 10.31234/osf.io/ejubn [DOI] [Google Scholar]
- Chen L, Benjamin R, Lai A, Heine S, 2022, January. Managing the terror of publication bias: A comprehensive p-curve analysis of the Terror Management Theory literature. https://psyarxiv.com/kuhy6 [Google Scholar]
- Christakis NA, 1997. The ellipsis of prognosis in modern medical thought. Soc. Sci. Med. 44(3), 301–315. [DOI] [PubMed] [Google Scholar]
- Cialkowska-Rysz A, Dzierzanowski T, 2013. Personal fear of death affects the proper process of breaking bad news. Arch. Med. Sci. 9, 127–131. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Clark D, 2002. Between hope and acceptance: the medicalisation of dying. BMJ. 324, 905–907. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Clarke AE, Mamo L, Fosket JR, Fishman JR, Shim JK, 2009. Biomedicalization: Technoscience, health, and illness in the U.S. Duke University Press, Durham. [Google Scholar]
- Cochrane JB, Levy MR, Fryer JE, Oglesby CA, 1991. Death anxiety, disclosure behaviors, and attitudes of oncologists toward terminal care. Omega: J. Death Dying. 22, 1–12. [Google Scholar]
- Conrad P, 2005. The shifting engines of medicalization. J. Health Soc. Behav. 46(1), 3–14. [DOI] [PubMed] [Google Scholar]
- Coulehan J, 2009. Compassionate solidarity: suffering, poetry, and medicine. Perspect. Biol. Med. 52, 585–603. [DOI] [PubMed] [Google Scholar]
- Crowley R, Daniel H, Cooney TG, Engel LS, 2020. Envisioning a better US health care system for all: coverage and cost of care. Ann. Intern. Med. 172, S7–S32. [DOI] [PubMed] [Google Scholar]
- Cruess RL, Cruess SR, Boudreau JD, Snell L, Steinert Y, 2015. A schematic representation of the professional identity formation and socialization of medical students and residents: a guide for medical educators. Acad. Med. 90, 718–725. [DOI] [PubMed] [Google Scholar]
- Cutler D, Skinner JS, Stern AD, Wennberg D, 2019. Physician beliefs and patient preferences: A new look at regional variation in health care spending. Am Econ J: Econ Pol. 11, 192–221. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Daly B, Hantel A, Wroblewski K, Balachandran JS, Chow S, DeBoer R, et al. , 2016. No exit: Identifying avoidable terminal oncology intensive care unit hospitalizations. J. Oncol. Pract. 12, e901–e911. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dar-Nimrod I, Heine SJ, 2011. Genetic essentialism: on the deceptive determinism of DNA. Psychol. Bull, 137(5), 800–818. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dartmouth Atlas Project, 2019. End of life care. One Medical Center Drive, Lebanon, NH 03756: The Trustees of Dartmouth College. [Google Scholar]
- Denney-Koelsch EM, Horowitz R, Quill T, Baldwin CD, 2018. An integrated, developmental four-year medical school curriculum in palliative care: a longitudinal content evaluation based on national competency standards. J. Palliat. Med. 21, 1221–1233. [DOI] [PubMed] [Google Scholar]
- DiMaggio PJ, Powell WW, 1983. The iron cage revisited: Institutional isomorphism and collective rationality in organizational fields. Am. Sociol. Rev, 147–160. [Google Scholar]
- Djulbegovic B, Tsalatsanis A, Mhaskar R, Hozo I, Miladinovic B, Tuch H, 2016. Eliciting regret improves decision making at the end of life. Eur. J. Cancer. 68, 27–37. [DOI] [PubMed] [Google Scholar]
- Donabedian A, 1966. Evaluating the quality of medical care. Milbank Mem. Fund Q. 44, 166–206. [PubMed] [Google Scholar]
- Dor-Ziderman Y, Lutz A, Goldstein A, 2019. Prediction-based neural mechanisms for shielding the self from existential threat. Neuroimage. 202, 116080. [DOI] [PubMed] [Google Scholar]
- Drought TS, Koenig BA, 2002. “Choice” in end-of-life decision making: researching fact or fiction? Gerontologist. 42 Spec No 3, 114–128. [DOI] [PubMed] [Google Scholar]
- Duberstein PR, Chen M, Hoerger M, Epstein RM, Perry LM, Yilmaz S, et al. , 2020. Conceptualizing and counting discretionary utilization in the final 100 days of life: A scoping review. J. Pain Symptom Manage. 59, 894–915. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Duberstein PR, Kravitz RL, Fenton JJ, Xing G, Tancredi DJ, Hoerger M, et al. , 2019. Physician and patient characteristics associated with more intensive end-of-life care. J. Pain Symptom Manage. 58, 208–215 e201. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Earle CC, Landrum MB, Souza JM, Neville BA, Weeks JC, Ayanian JZ, 2008. Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J. Clin. Oncol. 26, 3860–3866. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Eggerman S, Dustin D, 1986. Death orientation and communication with the terminally ill. Omega: J. Death Dying. 16, 255–265. [DOI] [PubMed] [Google Scholar]
- Eisenberg L, 1988. Science in medicine: too much or too little and too limited in scope? Am. J. Med. 84, 483–491. [PubMed] [Google Scholar]
- Ellen M, Perlman S, Horowitz E, Shach R, Catane R, 2020. Understanding physicians’ perceptions of overuse of health services in oncology. Med. Care Res. Rev, 107755872091511. [DOI] [PubMed] [Google Scholar]
- Ellis EM, Barnato AE, Chapman GB, Dionne-Odom JN, Lerner JS, Peters E, et al. , 2019. Toward a conceptual model of affective predictions in palliative care. J. Pain Symptom Manage. 57, 1151–1165. [DOI] [PubMed] [Google Scholar]
- Elshaug AG, Rosenthal MB, Lavis JN, Brownlee S, Schmidt H, Nagpal S, et al. , 2017. Levers for addressing medical underuse and overuse: achieving high-value health care. Lancet. 390, 191–202. [DOI] [PubMed] [Google Scholar]
- Engel GL, 1992. How much longer must medicine’s science be bound by a seventeenth century world view? Fam. Syst. Health. 10, 333–346. [DOI] [PubMed] [Google Scholar]
- Engel GL, 1980. The clinical application of the biopsychosocial model. Am. J. Psychiatry. 137(5), 535–544. [DOI] [PubMed] [Google Scholar]
- Epner DE, Baile WF, 2014. Difficult conversations: teaching medical oncology trainees communication skills one hour at a time. Acad. Med. 89, 578–584. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Eyal N, Sjöstrand M, 2020. On knowingly setting unrealistic goals in public health. Am. J. Public Health. 110, 480–484. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Fagerlin A, Schneider CE, 2004. Enough - The failure of the living will. Hastings Cent. Rep. 34, 30–42. [PubMed] [Google Scholar]
- Fallowfield LJ, Jenkins VA, Beveridge HA, 2002. Truth may hurt but deceit hurts more: communication in palliative care. Palliat. Med. 16, 297–303. [DOI] [PubMed] [Google Scholar]
- Fenton JJ, Duberstein PR, Kravitz RL, Xing G, Tancredi DJ, Fiscella K, et al. , 2018. Impact of prognostic discussions on the patient-physician relationship: Prospective cohort study. J. Clin. Oncol. 36, 225–230. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Ferrer RA, Ellis EM, Orehek E, Klein WMP, 2021. Fear increases likelihood of seeking decisional support from others when making decisions involving ambiguity. J. Behav. Decis. Mak. doi: 10.1002/bdm.2266 [DOI] [Google Scholar]
- Ferrer RA, Padgett L, Ellis EM, 2016. Extending emotion and decision-making beyond the laboratory: The promise of palliative care contexts. Emotion (Washington, D.C.). 16, 581–586. [DOI] [PubMed] [Google Scholar]
- Finkelstein A, Gentzkow M, Williams H, 2016. Sources of geographic variation in health care: Evidence from patient migration. Q. J. Econ. 131(4), 1681–1726. doi: 10.1093/qje/qjw023 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Finkelstein E, Baid D, Cheung Y, Schweitzer M, Malhotra C, Volpp K, et al. , 2021. Hope, bias and survival expectations of advanced cancer patients: A cross-sectional study. Psycho‐Oncol. 30, 780–788. [DOI] [PubMed] [Google Scholar]
- Finucane TE, 2013. Mortals who are reconciled to being mortal. J. Am. Geriatr. Soc. 61, 2059. [DOI] [PubMed] [Google Scholar]
- Fox R, Lief H, 1963. Training for “detached concern” in medical students, in: Lief HI, Lief V F, and N L (Eds.), The psychological basis of medical practice. pp. 12–35. Harper and Row, New York. [Google Scholar]
- Frosch DL, May SG, Rendle KAS, Tietbohl C, Elwyn G, 2012. Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Aff. 31, 1030–1038. [DOI] [PubMed] [Google Scholar]
- Frost DW, Cook DJ, Heyland DK, Fowler RA, 2011. Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit. Care Med. 39, 1174–1189. [DOI] [PubMed] [Google Scholar]
- Fuchs VR, 1968. The growing demand for medical care. N. Engl. J. Med. 279, 190–195. [DOI] [PubMed] [Google Scholar]
- Gawande A, 2017. Being mortal: Medicine and what matters in the end. Picador, Metropolitan Books, Henry Holt and Company, New York. [Google Scholar]
- Gidwani-Marszowsk R, Needleman J, Mor V, Faricy-Anderson K, Boothroyd DB, Hsin G, et al. , 2018. Quality of end-of-life care is higher in the VA compared to care paid for by traditional Medicare. Health Aff. 37, 95–103. [DOI] [PubMed] [Google Scholar]
- Glare P, Virik K, Jones M, Hudson M, Eychmuller S, Simes J, Christakis N, 2003. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ, 327(7408), 195–198. doi: 10.1136/bmj.327.7408.195 [doi] [DOI] [PMC free article] [PubMed] [Google Scholar]
- Glouberman S, Zimmerman B, 2002. Complicated and complex systems: What would successful reform of Medicare look like? In M. T. Forest GP, Marchildon G (Ed.), Health Care Services and the Process of Change (Vol. 2, pp. 21–53). University of Toronto Press, Toronto. Originally published in 2002 by the Commission on the Future of Health Care in Canada, Ottawa. [Google Scholar]
- Goldenberg JL, Arndt J, 2008. The implications of death for health: a terror management health model for behavioral health promotion. Psychol. Rev. 115, 1032–1053. [DOI] [PubMed] [Google Scholar]
- Good MJD, Gadmer NM, Ruopp P, Lakoma M, Sullivan AM, Redinbaugh E, et al. , 2004. Narrative nuances on good and bad deaths: internists’ tales from high-technology work places. Soc. Sci. Med. 58, 939–953. [DOI] [PubMed] [Google Scholar]
- Good MJD, Good BJ, Schaffer C, Lind SE, 1990. American oncology and the discourse on hope. Cult. Med. Psych. 14, 59–79. [DOI] [PubMed] [Google Scholar]
- Greenberg J, Pyszczynski T, Solomon S, 1986. The causes and consequences of a need for self-esteem: A Terror Management Theory, in: Baumeister RF (Ed.), Public self and private self pp. 189–212. Springer-Verlag, New York. [Google Scholar]
- Greenberg J, Pyszczynski T, Solomon S, Simon L, Breus M, 1994. Role of consciousness and accessibility of death-related thoughts in mortality salience effects. J. Pers. Soc. Psychol. 67, 627–637. [DOI] [PubMed] [Google Scholar]
- Greenberg J, Schimel J, Martens A, Solomon S, Pyszcznyski T, 2001. Sympathy for the devil: Evidence that reminding Whites of their mortality promotes more favorable reactions to White racists. Motiv. Emotion. 25, 113–133. [Google Scholar]
- Greenberg J, Vail K, Pyszczynski T, 2014. Terror management theory and research: How the desire for death transcendence drives our strivings for meaning and significance, Advances in motivation science, Vol. 1. pp. 85–134. Elsevier Academic Press, San Diego, CA, US. [Google Scholar]
- Greenspan A,1996. The challenge of central banking in a democratic society. Francis Boyer Lecture of The American Enterprise Institute for Public Policy Research: The Federal Reserve Board. [Google Scholar]
- Griskevicius V, Goldstein NJ, Mortensen CR, Cialdini RB, Kenrick DT, 2006. Going along versus going alone: when fundamental motives facilitate strategic (non) conformity. J. Pers. Soc. Psychol. 91(2), 281–294. [DOI] [PubMed] [Google Scholar]
- Haidt J, 2003. The moral emotions. Handbook of affective sciences. 11, 852–870. [Google Scholar]
- Haidt J, 2012. The righteous mind: Why good people are divided by politics and religion. Vintage Books, New York. [Google Scholar]
- Hamel L, Wu B, Brodie M, 2017. Views and experiences with end-of-life medical care in the U.S. The Henry J. Kaiser Family Foundation, Menlo Park, CA. [Google Scholar]
- Hawe P, Shiell A, Riley T, 2009. Theorising interventions as events in systems. Am. J. Community Psychol. 43(3), 267–276. [DOI] [PubMed] [Google Scholar]
- Heise LL, 1998. Violence against women: An integrated, ecological framework. Violence Against Women, 4(3), 262–290. [DOI] [PubMed] [Google Scholar]
- Henrich J, 2020. The weirdest people in the world: How the west became psychologically peculiar and particularly prosperous. Farrar, Straus and Giroux, New York. [Google Scholar]
- Henrich J, Heine SJ, Norenzayan A, 2010. The weirdest people in the world? Behav. Brain Sci. 33, 61–83; discussion 83–135. [DOI] [PubMed] [Google Scholar]
- Henson LA, Edmonds P, Johnston A, Johnson HE, Ling CNY, Sklavounos A, et al. , 2020. Population-based quality indicators for end-of-life cancer care: a systematic review. JAMA Oncol. 6, 142–150. [DOI] [PubMed] [Google Scholar]
- Himmelstein DU, Lawless RM, Thorne D, Foohey P, Woolhandler S, 2019. Medical bankruptcy: still common despite the Affordable Care Act. pp. 431–433: American Public Health Association. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Hirsh D, Gaufberg E, Ogur B, Cohen P, Krupat E, Cox M, et al. , 2012. Educational outcomes of the Harvard Medical School-Cambridge integrated clerkship: a way forward for medical education. Acad. Med. 87, 643–650. [DOI] [PubMed] [Google Scholar]
- Hoerger M, Chapman BP, Epstein RM, Duberstein PR, 2012. Emotional intelligence: A theoretical framework for individual differences in affective forecasting. Emotion. 12, 716–725. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Hoerger M, Gramling R, Epstein R, Fenton JJ, Mohile S, Kravitz R, … Duberstein P. Patient, caregiver, and oncologist predictions of quality of life in advanced cancer: Accuracy and associations with end‐of‐life care and caregiver bereavement. Psychooncology, in press, 10.1002/pon.5887 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Horwitz AV, Wakefield JC, 2007. The loss of sadness: How psychiatry transformed normal sorrow into depressive disorder. Oxford University Press, USA, New York. [DOI] [PubMed] [Google Scholar]
- Huynh TN, Kleerup EC, Raj PP, Wenger NS, 2014. The opportunity cost of futile treatment in the ICU. Crit. Care Med. 42, 1977–1982. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Illich I, 1976. Limits to Medicine: Medical Nemesis, the Expropriation of Health. Boyars, London. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Ingelfinger FJ, 1980. Arrogance. N. Engl. J. Med. 303, 1507–1511. [DOI] [PubMed] [Google Scholar]
- Institute of Medicine, 2001. Crossing the quality chasm: A new health system for the 21st century. National Academy Press, Washington, D.C. [PubMed] [Google Scholar]
- Institute of Medicine, 2015. Dying in America: Improving quality and honoring individual preferences near the end of life. National Academies Press, Washington, D.C. [PubMed] [Google Scholar]
- Isaacowitz DM, Allard ES, Murphy NA, Schlangel M, 2009. The time course of age-related preferences toward positive and negative stimuli. J. Gerontol. B Psychol. Sci. Soc. Sci. 64B, 188–192. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Jackson VA, Mack J, Matsuyama R, Lakoma MD, Sullivan AM, Arnold RM, et al. , 2008. A qualitative study of oncologists’ approaches to end-of-life care. J. Palliat. Med. 11, 893–906. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Jimenez G, Tan WS, Virk AK, Low CK, Car J, Ho AHY, 2018. Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. J. Pain Symptom Manage. 56, 436–459.e425. [DOI] [PubMed] [Google Scholar]
- Kagawa-Singer M, Valdez Dadia A, Yu MC, Surbone A, 2010. Cancer, culture, and health disparities: Time to chart a new course? CA Cancer J. Clin. 60(1), 12–39. doi: 10.3322/caac.20051 [DOI] [PubMed] [Google Scholar]
- Kaufman MR, Cornish F, Zimmerman RS, Johnson BT, 2014. Health behavior change models for HIV prevention and AIDS care: Practical recommendations for a multi-level approach. J. Acquir. Immune Defic. Syndr, 66 Suppl. 3(3), S250–S258. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kaufman SR, Shim JK, Russ AJ, 2004. Revisiting the biomedicalization of aging: Clinical trends and ethical challenges. Gerontologist. 44, 731–738. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kaufman SR, Shim JK, Russ AJ, 2006. Old age, life extension, and the character of medical choice. J. Gerontol. B Psychol. Sci. Soc. Sci. 61, S175–S184. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kelley AS, Morrison RS, Wenger NS, Ettner SL, Sarkisian CA, 2010. Determinants of treatment intensity for patients with serious illness: a new conceptual framework. J. Palliat. Med. 13, 807–813. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kendi IX, 2017. Stamped from the beginning: The definitive history of racist ideas in America. Random House, New York. [Google Scholar]
- Kirkpatrick LA, Navarrete CD, 2006. Reports of my death anxiety have been greatly exaggerated: A critique of Terror Management Theory from an evolutionary perspective. Psychol. Inq, 17(4), 288–298. [Google Scholar]
- Klein RA, Cook CL, Ebersole CR, Vitiello CA, Nosek BA, Chartier CR, … Ratliff KA, 2019. Many Labs 4: Failure to replicate mortality salience effect with and without original author involvement. 10.31234/osf.io/vef2c [DOI] [Google Scholar]
- Knutzen KE, Schifferdecker KE, Murray GF, Alam SS, Brooks GA, Kapadia NS, et al. , 2020. Role of norms in variation in cancer centers’ end-of-life quality: qualitative case study protocol. BMC Palliat. Care. 19, 1–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Koenig BA, Gates-Williams J, 1995. Understanding cultural difference in caring for dying patients. West. J. Med. 163, 244–249. [PMC free article] [PubMed] [Google Scholar]
- Krieger N, 2008. Proximal, distal, and the politics of causation: what’s level got to do with it? Am. J. Public Health. 98, 221–230. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kruser JM, Cox CE, Schwarze ML, 2017. Clinical momentum in the intensive care unit. A latent contributor to unwanted care. Ann. Am. Thorac. Soc. 14, 426–431. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Landau MJ, Johns M, Greenberg J, Pyszczynski T, Martens A, Goldenberg JL, et al. , 2004. A function of form: terror management and structuring the social world. J. Pers. Soc. Psychol. 87, 190–210. [DOI] [PubMed] [Google Scholar]
- Lang FR, 2001. Regulation of social relationships in later adulthood. J. Gerontol. B Psychol. Sci. Soc. Sci. 56, P321–P326. [DOI] [PubMed] [Google Scholar]
- Lantos JD, Meadow WL, 2011. Should the “slow code” be resuscitated? Am. J. Bioeth. 11, 8–12. [DOI] [PubMed] [Google Scholar]
- Le Fanu J, 2012. The rise and fall of modern medicine. Basic Books, New York. [Google Scholar]
- Leff B, Finucane TE, 2008. Gizmo idolatry. JAMA. 299, 1830–1832. [DOI] [PubMed] [Google Scholar]
- Levine E, Hart J, Moore K, Rubin E, Yadav K, Halpern S, 2018. The surprising costs of silence: Asymmetric preferences for prosocial lies of commission and omission. J. Pers. Soc. Psychol. 114, 29–51. [DOI] [PubMed] [Google Scholar]
- Löckenhoff CE, Carstensen LL, 2007. Aging, emotion, and health-related decision strategies: motivational manipulations can reduce age differences. Psychol. Aging. 22, 134–146. [DOI] [PubMed] [Google Scholar]
- Löckenhoff CE, Carstensen LL, 2008. Decision strategies in health care choices for self and others: older but not younger adults make adjustments for the age of the decision target. J. Gerontol. B Psychol. Sci. Soc. Sci. 63, P106–109. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Loh KP, Seplaki CL, Sanapala C, Yousefi-Nooraie R, Lund JL, Epstein RM, … Xu H, 2022. Association of Prognostic Understanding With Health Care Use Among Older Adults With Advanced Cancer: A Secondary Analysis of a Cluster Randomized Clinical Trial. JAMA Network Open, 5(2), e220018-e220018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Lown B, 1999. The lost art of healing: Practicing compassion in medicine. Ballantine Books/Random House, New York. [Google Scholar]
- Lown BA, Manning CF, 2010. The Schwartz Center Rounds: evaluation of an interdisciplinary approach to enhancing patient-centered communication, teamwork, and provider support. Acad. Med. 85, 1073–1081. [DOI] [PubMed] [Google Scholar]
- Luta X, Maessen M, Egger M, Stuck AE, Goodman D, Clough-Gorr KM, 2015. Measuring intensity of end of life care: A systematic review. PLoS One. 10, e0123764. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Maciasz RM, Arnold RM, Chu E, Park SY, White DB, Vater LB, et al. , 2013. Does it matter what you call it? A randomized trial of language used to describe palliative care services. Support. Care Cancer. 21, 3411–3419. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mack JW, Smith TJ, 2012. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J. Clin. Oncol. 30, 2715–2717. [DOI] [PubMed] [Google Scholar]
- Malhotra K, Fenton JJ, Duberstein PR, Epstein RM, Xing G, Tancredi DJ, et al. , 2019. Prognostic accuracy of patients, caregivers, and oncologists in advanced cancer. Cancer. 125, 2684–2692. [DOI] [PubMed] [Google Scholar]
- Markus HR, Kitayama S, 2010. Cultures and selves: A cycle of mutual constitution. Perspect. Psychol. Sci, 5(4), 420–430. doi: 10.1177/1745691610375557 [DOI] [PubMed] [Google Scholar]
- Martens A, Burke BL, Schimel J, Faucher EH, 2011. Same but different: Meta-analytically examining the uniqueness of mortality salience effects. Eur. J. Soc. Psychol. 41, 6–10. [Google Scholar]
- Mather M, Carstensen LL, 2005. Aging and motivated cognition: the positivity effect in attention and memory. Trends Cogn. Sci. 9, 496–502. [DOI] [PubMed] [Google Scholar]
- Maxfield M, Greenberg J, Pyszczynski T, Weise DR, Kosloff S, Soenke M, et al. , 2014. Increases in generative concern among older adults following reminders of mortality. Int. J. Aging Hum. Dev. 79, 1–21. [PubMed] [Google Scholar]
- Maxfield M, Pyszczynski T, Kluck B, Cox CR, Greenberg J, Solomon S, et al. , 2007. Age-related differences in responses to thoughts of one’s own death: Mortality salience and judgments of moral transgressions. Psychol. Aging. 22, 341–353. [DOI] [PMC free article] [PubMed] [Google Scholar]
- McCleary RM, Barro RJ, 2006. Religion and economy. J. Econ. Perspect. 20, 49–72. [Google Scholar]
- Meier D (Dec. 3, 2013). From Avoidable Care to Right Care. Lown Conference. Boston. [Google Scholar]
- Meier DE, 2014. ‘I don’t want Jenny to think I’m abandoning her’: views on overtreatment. Health affairs (Project Hope). 33, 895–898. [DOI] [PubMed] [Google Scholar]
- Meier DE, Back AL, Morrison RS, 2001. The inner life of physicians and care of the seriously ill. JAMA. 286, 3007–3014. [DOI] [PubMed] [Google Scholar]
- Menzies I, 1960. A case study in the functioning of social systems as a defense against anxiety. Hum. Relat. 13, 95–121. [Google Scholar]
- Menzies RE, Zuccala M, Sharpe L, Dar-Nimrod I, 2018. The effects of psychosocial interventions on death anxiety: A meta-analysis and systematic review of randomised controlled trials. J. Anxiety Disord. 59, 64–73. [DOI] [PubMed] [Google Scholar]
- Mikels JA, Larkin GR, Reuter-Lorenz PA, Cartensen LL, 2005. Divergent trajectories in the aging mind: changes in working memory for affective versus visual information with age. Psychol. Aging. 20, 542–553. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mikulincer M, Florian V, Hirschberger G, 2003. The existential function of close relationships: introducing death into the science of love. Pers. Soc. Psychol. Rev, 7(1), 20–40. [DOI] [PubMed] [Google Scholar]
- Miller WL, Rubinstein EB, Howard J, Crabtree BF, 2019. Shifting implementation science theory to empower primary care practices. Ann. Fam. Med. 17(3), 250–256. doi: 10.1370/afm.2353 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Molitor D, 2018. The evolution of physician practice styles: evidence from cardiologist migration. Am. Econ. J.: Econ. Polic. 10, 326–356. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Monin JK, Schulz R, 2009. Interpersonal effects of suffering in older adult caregiving relationships. Psychol. Aging. 24, 681–695. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Morrison RS, 2020. Advance directives/care planning: Clear, simple, and wrong. J. Palliat. Med. 23, 878–879. [DOI] [PubMed] [Google Scholar]
- Mount B, 1986. Dealing with our losses. J. Clin. Oncol. 4, 1127–1134. [DOI] [PubMed] [Google Scholar]
- Nassery N, Segal JB, Chang E, Bridges JF, 2015. Systematic overuse of healthcare services: a conceptual model. Applied health economics and health policy. 13, 1–6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Navarrete CD, Fessler DM, 2005. Normative bias and adaptive challenges: A relational approach to coalitional psychology and a critique of Terror Management Theory. Evol. Psychol, 3(1), 147470490500300121. [Google Scholar]
- Navarrete CD, Kurzban R, Fessler DM, Kirkpatrick LA, 2004. Anxiety and intergroup bias: Terror management or coalitional psychology? Group Process Intergroup Relat., 7(4), 370–397. [Google Scholar]
- Nelson EC, Batalden PB, Huber TP, Mohr JJ, Godfrey MM, Headrick LA, et al. , 2002. Microsystems in health care: Part 1. Learning from high-performing front-line clinical units. Jt. Comm. J. Qual. Improv. 28, 472–493. [DOI] [PubMed] [Google Scholar]
- Nentwich JC, Morison T, 2018. Performing the self: Performativity and discursive psychology, in: Travis CBW, Jacquelyn W (Ed.), APA Handbook on the Psychology of Women. pp. 209–228. American Psychological Association., Washington, D.C. [Google Scholar]
- Neuman MD, 2010. Surgeons’ decisions and the financial and human costs of medical care. N. Engl. J. Med. 363, 2382–2383. [DOI] [PubMed] [Google Scholar]
- Oken D, 1961. What to tell cancer patients. A study of medical attitudes. JAMA. 175, 1120–1128. [DOI] [PubMed] [Google Scholar]
- Osborn R, Moulds D, Squires D, Doty MM, Anderson C, 2014. International survey of older adults finds shortcomings in access, coordination, and patient-centered care. Health affairs (Project Hope). 33, 2247–2255. [DOI] [PubMed] [Google Scholar]
- Panagopoulou E, Mintziori G, Montgomery A, Kapoukranidou D, Benos A, 2008. Concealment of information in clinical practice: is lying less stressful than telling the truth? J. Clin. Oncol. 26, 1175–1177. [DOI] [PubMed] [Google Scholar]
- Papanicolas I, Woskie LR, Jha AK, 2018. Health care spending in the United States and other high-income countries. JAMA. 319, 1024–1039. [DOI] [PubMed] [Google Scholar]
- Pask S, Pinto C, Bristowe K, Van Vliet L, Nicholson C, Evans CJ, … Guo P, 2018. A framework for complexity in palliative care: a qualitative study with patients, family carers and professionals. Palliat. Med. 32(6), 1078–1090. [DOI] [PubMed] [Google Scholar]
- Pescosolido BA, 1992. Beyond rational choice: The social dynamics of how people seek help. Am. J. Sociol. 97, 1096–1138. [Google Scholar]
- Phillips KA, Morrison KR, Andersen R, Aday LA, 1998. Understanding the context of healthcare utilization: assessing environmental and provider-related variables in the behavioral model of utilization. Health Serv. Res. 33, 571–596. [PMC free article] [PubMed] [Google Scholar]
- Piers RD, Azoulay E, Ricou B, Dekeyser Ganz F, Decruyenaere J, Max A, et al. , 2011. Perceptions of appropriateness of care among European and Israeli intensive care unit nurses and physicians. JAMA. 306, 2694–2703. [DOI] [PubMed] [Google Scholar]
- Prigerson HG, Maciejewski PK, 2012. Dartmouth Atlas: putting end-of-life care on the map but missing psychosocial detail. J. Support. Oncol. 10, 25–28. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Prochaska JO, 2008. Decision making in the transtheoretical model of behavior change. Med. Decis. Making. 28, 845–849. [DOI] [PubMed] [Google Scholar]
- Proulx T, Heine SJ, 2006. Death and black diamonds: Meaning, mortality, and the meaning maintenance model. Psychol. Inq. 17, 309–318. [Google Scholar]
- Pyszczynski T, Solomon S, Greenberg J, 2015. Thirty years of Terror Management Theory: From genesis to revelation. In Olson MPJM and Zanna (Eds.), Advances in Experimental Social Psychology (Vol. 52, pp. 1–70). San Diego: Academic Press. [Google Scholar]
- Quadagno J, 2004. Why the United States has no national health insurance: Stakeholder mobilization against the welfare state, 1945–1996. J. Health Soc. Behav. 45 Suppl, 25–44. [PubMed] [Google Scholar]
- Quill CM, Ratcliffe SJ, Harhay MO, Halpern SD, 2014. Variation in decisions to forgo life-sustaining therapies in US ICUs. Chest. 146, 573–582. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Quill TE, Cassel CK, 1995. Nonabandonment: a central obligation for physicians. Ann. Intern. Med, 122(5), 368–374. [DOI] [PubMed] [Google Scholar]
- Rai TS, Fiske AP, 2011. Moral psychology is relationship regulation: moral motives for unity, hierarchy, equality, and proportionality. Psychol. Rev. 118, 57–75. [DOI] [PubMed] [Google Scholar]
- Ramsey SD, Bansal A, Fedorenko CR, Blough DK, Overstreet KA, Shankaran V, et al. , 2016. Financial insolvency as a risk factor for early mortality among patients with cancer. J. Clin. Oncol. 34, 980–986. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Reed AE, Chan L, Mikels JA, 2014. Meta-analysis of the age-related positivity effect: age differences in preferences for positive over negative information. Psychol. Aging. 29, 1–15. [DOI] [PubMed] [Google Scholar]
- Reisfield GM, Wilson GR, 2004. Use of metaphor in the discourse on cancer. J. Clin. Oncol. 22, 4024–4027. [DOI] [PubMed] [Google Scholar]
- Relman AS, 1994. The impact of market forces on the physician-patient relationship. J. R. Soc. Med. 87 Suppl 22, 22–24; discussion 24–25. [PMC free article] [PubMed] [Google Scholar]
- Renkema LJ, Stapel DA, Van Yperen NW, 2008. Go with the flow: Conforming to others in the face of existential threat. Eur. J. Soc. Psychol. 38, 747–756. [Google Scholar]
- Rittel HWJ, Webber MM, 1973. Dilemmas in a general theory of planning. Policy Sci. 4, 155–169. [Google Scholar]
- Rodenbach RA, Rodenbach KE, Tejani MA, Epstein RM, 2016. Relationships between personal attitudes about death and communication with terminally ill patients: How oncology clinicians grapple with mortality. Patient Educ. Couns. 99, 356–363. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Rosenthal E, 2017. An American sickness: How healthcare became big Business and how you can take it back. Penguin Books, New York. [Google Scholar]
- Russ AJ, Shim JK, Kaufman SR, 2007. The value of “life at any cost”: Talk about stopping kidney dialysis. Soc. Sci. Med. 64, 2236–2247. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Saeed F, Duberstein P, Epstein RM, Lang V, Liebman SE, 2021. Frequency and severity of moral distress in nephrology fellows: A national survey. Am. J. Nephrol, 1–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Saeed F, Ladwig SA, Epstein RM, Monk RD, Duberstein PR, 2020. Dialysis regret: prevalence and correlates. Clin. J. Am. Soc. Nephrol. 15, 957–963. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, … Wyatt K, 2022. Report of the Lancet Commission on the Value of Death: Bringing death back into life. The Lancet, 399(10327), 837–884. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Samanez-Larkin GR, Robertson ER, Mikels JA, Carstensen LL, Gotlib IH, 2009. Selective attention to emotion in the aging brain. Psychol. Aging. 24, 519–529. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Scheibe S, Carstensen LL, 2010. Emotional aging: recent findings and future trends. J. Gerontol. B Psychol. Sci. Soc. Sci. 65B, 135–144. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Schulz R, Aderman D, 1979. Physician’s death anxiety and patient outcomes. Omega: J. Death Dying. 9, 327–332. [Google Scholar]
- Schwartz SH, Cieciuch J, Vecchione M, Davidov E, Fischer R, Beierlein C, et al. , 2012. Refining the theory of basic individual values. J. Pers. Soc. Psychol. 103, 663–688. [DOI] [PubMed] [Google Scholar]
- Seale C, Addington Hall J, McCarthy M, 1997. Awareness of dying: Prevalence, causes and consequences. Soc. Sci. Med. 45, 477–484. [DOI] [PubMed] [Google Scholar]
- Segal JB, Nassery N, Chang HY, Chang E, Chan K, Bridges JF, 2015. An index for measuring overuse of health care resources with Medicare claims. Med. Care. 53, 230–236. [DOI] [PubMed] [Google Scholar]
- Shinall MC Jr., Ehrenfeld JM, Guillamondegui OD, 2014. Religiously affiliated intensive care unit patients receive more aggressive end-of-life care. J. Surg. Res. 190, 623–627. [DOI] [PubMed] [Google Scholar]
- Silveira MJ, Kim SY, Langa KM, 2010. Advance directives and outcomes of surrogate decision making before death. N. Engl. J. Med. 362, 1211–1218. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Smith DM, Loewenstein G, Jankovic A, Ubel PA, 2009. Happily hopeless: adaptation to a permanent, but not to a temporary, disability. Health Psychol. 28, 787–791. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Solomon S, Lawlor K, 2011. Death anxiety: The challenge and the promise of whole person care, in: Hutchinson TA (Ed.), Whole person care: A new paradigm for the 21st century. pp. 97–107. Springer Science+Business Media, LLC. [Google Scholar]
- Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA, 2000. In search of a good death: observations of patients, families, and providers. Ann. Intern. Med. 132, 825–832. [DOI] [PubMed] [Google Scholar]
- Stephens NM, Markus HR, Fryberg SA, 2012. Social class disparities in health and education: Reducing inequality by applying a sociocultural self model of behavior. Psychol. Rev. 119(4), 723–744. [DOI] [PubMed] [Google Scholar]
- Sudore RL, Fried TR, 2010. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann. Intern. Med, 153(4), 256–261. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sullivan-Singh SJ, Stanton AL, Low CA, 2015. Living with limited time: Socioemotional Selectivity Theory in the context of health adversity. J. Pers. Soc. Psychol. 108, 900–916. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Taleb NN, 2007. The Black Swan: The Impact of the Highly Improbable. Random House, New York. [Google Scholar]
- Tanco K, Rhondali W, Perez-Cruz P, Tanzi S, Chisholm GB, Baile W, et al. , 2015. Patient perception of physician compassion after a more optimistic vs a less optimistic message a randomized clinical trial. JAMA Oncol. 1, 176–183. [DOI] [PubMed] [Google Scholar]
- Tangney JP, Stuewig J, Mashek DJ, 2007. Moral emotions and moral behavior. Annu. Rev. Psychol. 58, 345–372. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden NE, et al. , 2013. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 309, 470–477. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Thiemann P, Quince T, Benson J, Wood D, Barclay S, 2015. Medical students’ death anxiety: Severity and association with psychological health and attitudes toward palliative care. J. Pain Symptom Manage. 50, 335–342.e332. [DOI] [PubMed] [Google Scholar]
- Tinetti ME, 2012. The retreat from advanced care planning. JAMA. 307, 915–916. [DOI] [PubMed] [Google Scholar]
- Tritt SM, Inzlicht M, Harmon-Jones E, 2012. Toward a biological understanding of mortality salience (and other threat compensation processes). Soc. Cogn. 30(6), 715–733. [Google Scholar]
- Vater LB, Donohue JM, Arnold R, White DB, Chu E, Schenker Y, 2014. What are cancer centers advertising to the public? A content analysis of cancer center advertisements. Ann. Intern. Med. 160, 813–820. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Vess M, Arndt J, Cox CR, Routledge C, Goldenberg JL, 2009. Exploring the existential function of religion: the effect of religious fundamentalism and mortality salience on faith-based medical refusals. J. Pers. Soc. Psychol. 97, 334–350. [DOI] [PubMed] [Google Scholar]
- Weber M, 2002. The Protestant ethic and the “spirit” of capitalism and other writings. Penguin Books, New York. [Google Scholar]
- White DB, Angus DC, Shields AM, Buddadhumaruk P, Pidro C, Paner C, et al. , 2018. A randomized trial of a family-support intervention in intensive care units. N. Engl. J. Med. 378, 2365–2375. [DOI] [PubMed] [Google Scholar]
- Wirtz V, Cribb A, Barber N, 2006. Patient-doctor decision-making about treatment within the consultation--a critical analysis of models. Soc. Sci. Med. 62, 116–124. [DOI] [PubMed] [Google Scholar]
- Wolf JH, Wolf KS, 2013. The Lake Wobegon effect: are all cancer patients above average? Milbank Q. 91, 690–728. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Wolf SM, Berlinger N, Jennings B, 2015. Forty years of work on end-of-life care - From patients’ rights to systemic reform. N Engl J Med. 372, 678–682. [DOI] [PubMed] [Google Scholar]
- Wolff JL, Roter DL, 2011. Family presence in routine medical visits: A meta-analytical review. Soc. Sci. Med. 72, 823–831. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. , 2008. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 300, 1665–1673. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Yagil D, Shnapper-Cohen M, 2016. When authenticity matters most: Physicians’ regulation of emotional display and patient satisfaction. Patient Educ. Couns. 99, 1694–1698. [DOI] [PubMed] [Google Scholar]
- Zajonc RB, Adelmann PK, Murphy ST, Niedenthal PM, 1987. Convergence in the physical appearance of spouses. Motiv. Emotion. 11, 335–346. [Google Scholar]
- Zhang B, Nilsson ME, Prigerson HG, 2012. Factors important to patients’ quality of life at the end of life. Arch. Intern. Med. 172, 1133–1142. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, et al. , 2009. Health care costs in the last week of life associations with end-of-life conversations. Arch. Intern. Med. 169, 480–488. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Zussman R, 1992. Intensive care: Medical ethics and the medical profession. University of Chicago Press, Chicago. [Google Scholar]
References
- Alvesson M, Spicer A, 2012. A stupidity‐based theory of organizations. J. Manag. Stud, 49(7), 1194–1220. [Google Scholar]
- Becker E, 1973. The Denial of Death. Free Press, New York. [Google Scholar]
- Bellah RN, 1985. Habits of the Heart: Individualism and Commitment in American Life. University of California Press, Berkeley. [Google Scholar]
- Braun RT, Jung H-Y, Casalino LP, Myslinski Z, Unruh MA, 2021. Association of private equity investment in US nursing homes with the quality and cost of care for long-stay residents. JAMA Health Forum, 2(11), e213817. doi: 10.1001/jamahealthforum.2021.3817 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Carman KL, Maurer M, Yegian JM, Dardess P, McGee J, Evers M, Marlo KO, 2010. Evidence that consumers are skeptical about evidence-based health care. Health Aff, 29(7), 1400–1406. [DOI] [PubMed] [Google Scholar]
- Curti BD, 2018. Immunotherapy in advanced renal cancer–is cure possible? N. Engl. J. Med. 378(14), 1344–1345. doi: 10.1056/NEJMe1801682 [DOI] [PubMed] [Google Scholar]
- Ehrenreich B, 2010. Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. Thorndike Press, Waterville, ME. [Google Scholar]
- Fagerlin A, Zikmund-Fisher BJ, Ubel PA, 2005. Cure me even if it kills me: preferences for invasive cancer treatment. Med. Decis. Making, 25(6), 614–619. [DOI] [PubMed] [Google Scholar]
- Fromm E, 1970. Thoughts on bureaucracy. Manage. Sci, 16(12), 699–705. [Google Scholar]
- Fromm E, 1941/1969. Escape from Freedom. Henry Holt and Company, New York. [Google Scholar]
- Hanson LC, Zimmerman S, Song MK, Lin FC, Rosemond C, Carey TS, Mitchell SL, 2017. Effect of the goals of care intervention for advanced dementia: a randomized clinical trial. JAMA Intern. Med, 177(1), 24–31. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Hunter JD, 1991. Culture Wars: The Struggle to Define America. Basic Books, New York. [Google Scholar]
- Kahneman D, 2011. Thinking, Fast and Slow. Farrar Straus & Giroux, New York. [Google Scholar]
- Kendi IX, 2017. Stamped from the Beginning: The Definitive History of Racist Ideas in America. Random House, New York. [Google Scholar]
- Lasch C, 1979. The Culture of Narcissism: American Life in an Age of Diminishing Expectations. Norton, New York. [Google Scholar]
- Schlesinger M, Grob R, 2017. Treating, fast and slow: Americans' understanding of and responses to low-value care. Milbank Q, 95(1), 70–116. doi: 10.1111/1468-0009.12246 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Seow H, Brazil K, Sussman J, Pereira J, Marshall D, Austin PC, Husain A, Rangrej J Barbera L, 2014. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ, 348. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Twenge JM, Konrath S, Foster JD, Keith Campbell W, Bushman BJ, 2008. Egos inflating over time: A cross‐temporal meta‐analysis of the Narcissistic Personality Inventory. J. Pers, 76(4), 875–902. [DOI] [PubMed] [Google Scholar]
- Verkerk E, Van Dulmen S, Born K, Gupta R, Westert G, Kool R, 2021. Key factors that promote low-value care: Views of experts from the United States, Canada, and the Netherlands. Int. J. Health Policy Manag. doi: 10.34172/ijhpm.2021.53 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Weber M, 2002. The Protestant Ethic and the “Spirit” of Capitalism and Other Writings. Penguin Books, New York. [Google Scholar]



