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date: 20 September 2017

Death and Dying: An Intergroup Communication Approach

Summary and Keywords

Death is inevitable: We witness the death of others and eventually face our own. However, people in general view death as taboo and tend to avoid discussing their own or others’ mortality. A cultural shift has been taking place in the developed world so that dying has become an increasingly medicalized process, where death is viewed as something to be stopped or delayed instead of accepted as part of a natural life cycle. As family members are less responsible for the dying process, communication about death and dying becomes a sensitive topic and is often ignored or avoided. Lack of this meaningful communication can lead to stereotypes about the dying person, conflict among family members, and fear of death. Talking about death and dying, if done correctly, can have a positive impact on health-care delivery and the bereavement process.

Incorporating knowledge of intergroup communication with a lifespan approach can deepen communication effectiveness about death and dying. People’s group identities can play important roles in the conversation about death and dying. As children and adolescents, people can encounter the death of older family members (e.g., grandparents) and the communication here can be intergenerational. Due to age differences, younger adults may feel uncomfortable to react to older adults’ painful disclosure of death and the bereavement process. During adulthood, people deal with the death uncertainty for themselves and their loved ones. The communication in this period can be intergenerational and inter-occupational, especially when there are third parties involved (e.g., medical providers or legal authorities). Death and dying communication tend to happen mostly, albeit not always, during the later lifespan, as time of death approaches, among older adults, family members, and medical providers. These conversations include advanced care planning (i.e., arrangements and plans about the dying process and after death), medical decision making, palliative care, and final talks. Increasing the awareness of death and dying can help to normalize the dying process.

Keywords: death and dying, end-of-life communication, intergroup communication, advance care planning, hospice, stereotype, aging and communication, intergenerational communication, communication accommodation theory, social identity, health and illness

Introduction

Death is inevitable: We witness the death of others and eventually face our own. Along with birth, death and the process of dying are essential parts of life; however, people have a tendency to avoid discussing their own or others’ deaths (Greenberg & Arndt, 2011). Conversations about death and dying tend to be taboo internationally among all humans (Abdel-Khalek, 2003; McLaughlin & Braun, 1998; Walter, 1991). For example, more than 90% of Americans acknowledge the importance of end-of-life (EOL) preference discussions, but only around 30% have done so (The Conversation Project, 2013). People’s avoidance about discussing death-related topics can also be found internally in Canada (Heyland et al., 2013), Sweden (Österlind, Hansebo, Andersson, Ternestedt, & Hellström, 2011), and Israel (Braun, Gordon, & Uziely, 2010). Death and dying communication are key to successfully coping with the process of dying—for the dying and their loved ones—and to helping the dying achieve dignified deaths (IOM, 2015). Effective communication about EOL health decisions can prevent unnecessary or unwanted medical treatments, help people face death with more equanimity, and lessen people’s fears of death in their daily lives (Luth & Carr, 2015).

Several different types of communication about death and dying occur across the lifespan, not just at the predicted end of a lifespan. These conversations encompass the interactions before EOL, such as conversations about death, spirituality, and advance care planning (ACP); during EOL, such as when making decisions about treatment, palliative care, and/or final talks; and after EOL, such as during bereavement. Each type of death and dying communication is uniquely based on the context (e.g., located in a home or medical facility) and the interactants (e.g., family dyad, patient-provider dyad, family member-provider dyad, or, presumably, more complex triads, etc.). Research on communication about death and dying is multidisciplinary, including areas like communication, health-care administration, medicine, psychology, sociology, and others. However, the amount of systematic research in the field of communication is still limited, and most of it still focuses on communication at the end of the lifespan: EOL communication (Giles, Thai, & Prestin, 2014).

Those interactions often happen between different social groups such as patients and physicians, young and older adults, as well as a dying and non-dying group. The current chapter examines a novel approach that frames death and dying communication as an intergroup interaction, with interactants holding a specific social identity (e.g., patient, physician, young person, old person), but with “dying” as a salient social identity for all interactants involved. This chapter first outlines the different identities that lead to communicative problems, then describes some important movements in death and dying communication that resolve intergroup communication problems before, during, and after EOL.

Age of the Dying Person

The age of the dying person is a significant aspect of death and dying communication. Even though an EOL conversation with a dying child is less common than an older dying person, the dynamics of the conversation are so unique that both children and parents tend to avoid talking about death with each other and with other family members (Black, 1998; Galvin, 2015). This is mainly due to parental protectiveness, cultural norms, or fear of facing the truth. Thus, the experiences related to a dying child tend to be more tragic, heartbreaking, and painful than EOL conversation with dying elderly. The current chapter focuses on providing a general overview of death and dying communication, so the above specific type of death and dying communication is not included in the discussion. More information regard to EOL communication as a child is dying can be found in Galvin’s (2015) article.

Dying in older age is the most common form of dying. Aging sometimes indicates decline and inevitable death. In 2012, among 1.61 million patients in the United States who received hospice services (i.e., a type of EOL care focusing on pain relief and a dignified death), 83% of these hospice recipients were 65 years of age or older, and more than one-third of these were 85 years of age or older (National Hospice and Palliative Care Organization, 2012). Oftentimes, people unconsciously perceive old people as if they are dying soon or close to death (Depaola, Griffin, Young, & Neimeyer, 2003). The current chapter focuses on the death and dying conversations with the dying in older age.

Death and Dying Communication As Intergroup Interactions

Social identity theory points out that part of a person’s self-concept comes from the groups where that person belongs, such as social class, family, football team, etc. (Tajfel & Turner, 1986). Groups not only provide important sources of pride and self-esteem but give one a sense of belonging to the social world—social identity. People orient to one another in terms of not only individual characteristics but also group identifications. Group membership creates self-categorization and enhancement in ways that favor in their own group (i.e., ingroup mentality). The ingroup members tend to seek and talk about negative aspects of other comparable groups that they do not identify with (i.e., outgroup mentality). Therefore, people divided the world into “us” and “them” through a process of social categorization (i.e., identifying people into different social groups). One of the primary argument about SIT is that the outgroup mentality can lead to prejudice and stereotype toward the outgroup. Individuals’ perceptions of their own groups (e.g., social identities), and their perceptions of others’ group memberships (e.g., attitudes and stereotypes) can change communication styles and outcomes of interactions.

Communication about death and dying is indeed an intergroup interaction, with “dying,” “age,” and “occupation” as three separate salient social identities for all interactants involved. In death and dying communication, there are three important interactants—medical providers, bereaved families/friends, and the dying person. Each of them holds a specific ingroup identity and can assign stereotypes to the outgroup members. Depending on which players are in the interactions, their social identities, perceived attitudes, and stereotypes shape the communication processes and outcomes. This section outlines the three social identities—dying, aging, and occupation, and each of them can directly or indirectly impact the process and outcome of communication about death and dying.

Dying As a Social Category: Negative Attitudes Toward Death and Dying

The dying, in general, is viewed as a social category, and people assigned this dying social identity seem to be disliked by the non-dying group—the healthy, younger population (Kübler-Ross, 1969). This situation also refers to social death—a condition in which a dying person will be treated as socially dead based on that person’s social value, even though he or she is not biologically dead (Timmermans, 1998). Three social groups have been identified as socially dead: those in the final stages of a lengthy terminal physical illness, the very old, and those suffering from loss of their essential personhood due to dementia or coma (Sweeting & Gilhooly, 1992). People who are dying tend to fit more than one of these three categories. People have a tendency to distance themselves from being identified with this unpleasant “outgroup,” which is associated with the dying identity (Sudnow, 1967). Thus, there are pervasive negative attitudes toward death and dying. In Western culture, death tends to be viewed as taboo and something to avoid (Kübler-Ross, 1969). Thinking and talking about death triggers fear and anxiety toward it (Greenberg & Kosloff, 2008).

There are two primary factors that contribute to the formation of social categorization and negative attitudes toward the dying individual. First, there has been a cultural shift toward medicalization in the dying process (Luth & Carr, 2015). In the 1800s, witnessing death was commonplace, and adults did not separate or protect children from these sad experiences. Dying was a normal process of life, and 80% of people died at home while in the family’s care (Gold, 2011). Currently, most people die in health-care facilities instead of in the family home. Approximately 80% of the 2.2 million Americans who die each year die in a hospital (Keeley, Giles, & Nussbaum, 2015). The responsibility of taking care of a dying person has shifted from the family to medical providers. Thus, dying has become an increasingly “medicalized” process, where death is viewed as something to be stopped or delayed, rather than accepted as a natural part of the life cycle (Luth & Carr, 2015). This shift of the dying process from the family home to medical facilities reinforces negative attitudes toward death and dying, including death denial and anxiety. These negative attitudes also contribute to isolation of the sick and dying person at a time when interpersonal interaction is essential (Kübler-Ross, 1969).

Second, negative attitudes about dying people can also derive from a human being’s own uncertainties about death. Van den Bos (2001) defines uncertainty about death as humans’ own uncertainty about death, life, and existence; that is, the existential uncertainty. This uncertainty about death can stem from thinking about one’s own end and what lies after and beyond death—the unknown and unknowable (Bosticco & Thompson, 2008). This uncertainty includes fear of the afterlife (e.g., punishment in hell), fear of the act of dying itself (e.g., pain suffering), and fear of extinction (Thompson & Cusella, 2014). High levels of death anxiety and fear reinforce a non-dying person’s negative attitudes toward death during EOL conversations and ultimately affect both the dying person as well as the people who interact with them. These negative attitudes, which are assigned by the societal norms and people’s uncertainty about death, influence people’s communicative behaviors with a dying person.

Due to these negative attitudes about death and dying, avoidance has become a common communicative pattern when people talk about death and interact with a dying person. This communicative pattern can be observed from both medical providers and family members. In terms of medical providers, Addington and Wegescheide-Harris (1995) found that although physicians commit to treating the dying person as the whole person, they maintain a measured communication distance from terminally ill patients. In addition, nurses in Israel are more reluctant to care for the terminally ill patients compared with non-terminally ill patients especially when they have a higher fear of death (Braun, Gordon, & Uziely, 2010). This same pattern of avoidance is seen in the nursing home even though nursing home staff encounter death more often than any other medical providers. A discourse analysis in Sweden found that after the death of a resident, nursing home staff avoided discussing and expressing emotion about the loss with other staff members and residents (Österlind et al., 2011). According to the authors, two patterns that are associated with death avoidance include “dying is silent and silenced,” and “emotion is pushed into the background” (p. 529). Avoiding communicating about a death-related topic due to the negative attitude is common even among people who face death every day (Curtis et al., 2001).

Avoiding conversations about death and dying among family members is also widespread. Communication avoidance is consistent before, during and after the EOL. The Pew Research Center found that one-third of married individuals report avoiding discussions about EOL issues with their spouses (Pew Research Center, 2006). This avoidance leads to family conflicts and caregiver burdens when one of the spouses faces EOL decision making (Moorman & Inoue, 2012). In addition, family caregivers experience considerable difficulties in communicating with terminally ill cancer patients about illness and death. It was found that their reduced level of open communication was due to caregivers’ emotional exhaustion, self-efficacy, and the duration of caregiving (Bachner & Carmel, 2009). During the EOL bereavement, family members avoid communicating their feelings to cope with the grief of the loss (Parkes & Prigerson, 2013).

Negative attitudes about death and dying also have an impact on dying persons themselves as those negative attitudes can lead to passive information seeking and depression. For example, people who believed that cancer automatically led to death (i.e., cancer fatalism) tended to be more likely to avoid cancer screenings (Austin, Ahmad, McNally, & Stewart, 2002). This misconception about cancer prevented patients from seeking medical services that may have benefited their health outcomes. In addition, patients may overlook the importance of death and dying communication with physicians. A survey among 573 sclerosis patients indicated that 44% of the patients perceived death and dying discussions from the physician as unimportant (Buecken et al., 2012). In general, people who exhibited greater death anxiety and fear also experienced higher generalized anxiety, which further decreased psychological well-being (Neimeyer, Wittkowski, & Moser, 2004). These results are consistent among Korean college students (Jo & Lee, 2008)

Aging As a Social Category: Stereotypes and Communication Patterns Toward Older Dying Adults

As dying individuals also tend to be older, death and dying communication becomes an intergenerational communication between (grand)children and bereaved (grand)parents, or (grand)children and dying (grand) parents. Age identity becomes salient in these interactions; therefore, people’s stereotypes toward older adults influence their communicative pattern (Hummert, Garstka, Ryan, & Bonnesen, 2004). People connect dying people with older adults; thus, those aging stereotypes and communicative patterns toward older adults can be reinforced in older dying people (Depaola et al., 2003). When the interactions with older dying adults are intergenerational, two accommodating communication patterns can be found.

One common stereotype toward older adults is incompetence. This negative stereotype toward older adults is associated with an overaccommodative speech style (Cuddy & Fiske, 2002). Overaccommodation in intergroup interactions represents communication that exceeds the recipient’s desired level of adjustment and is often attuned to a stereotype rather than the partner’s actual competencies (Ryan, Giles, Bartolucci, & Henwood, 1986). This can also be characterized as patronizing speech and can involve the use of babyish terms (e.g., honey, darling, and sweetie), increased volume, reduced speech rate, or high and variable pitch. People tend to overaccommodate older adults during conversation both in the community (Ryan, Hummert, & Boich, 1995) and medical settings (Ryan, Kennaley, Pratt, & Shumovich, 2000). These stereotype-based modifications reinforce negative aging stereotypes and constrain older dying adults’ opportunities for satisfying conversation. In addition, overaccommodation has a negative effect on older people’s self-esteem and psychological well-being (O’Connor & Rigby, 1996). For example, the recipients of patronizing talk can evaluate themselves as less competent (Kemper & Harden, 1999). Eventually, patronizing speech makes death and dying communication with older adults more difficult and dissatisfying.

Another accommodating communication pattern is underaccommodation. While overaccommodation represents one group “going too far” in accommodating another group, contrastingly underaccommodation represents one group not going far enough in considering the needs of another group. Underaccommodation can be a two-way stress between young and older adults when communicating about painful death and dying topics. On the one hand, when older adults talk about painful life events such as bereavement and terminal illness, young adults may feel uncomfortable and embarrassed during older adults’ painful self-disclosure, so they adopt an underaccommodative communication pattern such as ignoring (Coupland, Coupland, Giles, & Wiemann, 1988). The feelings of not knowing how to respond can make young adults underaccommodate older adults’ needs for support (Henwood, Giles, Coupland, & Coupland, 1993). On the other hand, there is also underaccommodation by older people here, in that they talk about topics they are interested in, without considering the needs of their interlocutors. The disclosures of bereavement or terminal illness are not necessarily painful for older adults, even though young adults may perceive that older adults are depressed (Coupland et al., 1988). When communication about death and dying is also intergenerational, the underaccommodative pattern between young adult and older dying adults often leads to communication dysfunction.

Professional Identity From Medical Providers: The Contradiction

Medical professionals (i.e., physicians, nurses, hospice volunteers, social workers) hold a specific identity that focuses on the aspect of rationality and expertise in medicine. During EOL communication, this “You’re your provider” identity helps them successfully mediate the tension between family members and patients, and provide unbiased advice (Curtis et al., 2001). However, communication at EOL may contradict to their professional identity. For example, as a provider, a physician’s duty is to cure a disease. Discussions about EOL treatments like hospice or palliative care might imply a failure of their professional, as palliative care aims to only provide comfort care instead of treatment to cure. Thus, physicians tend to delay and avoid talking about these options, even when patients and families prefer that discussion about EOL options begin early (Csikai, 2006; Quill, 2000).

In addition, during the process of communication, medical providers’ ingroup identities make them privilege their needs as health providers instead of considering the needs of the patient and family (Hines, 2001). Research found that physicians at EOL care tend to pay less attention to the factors that are important to the patients but not so much to the physicians, such as not being a burden to family, being able to help others, having funeral arrangements planned, and feeling that one’s life is complete (Steinhauser et al., 2000). This indicates that medical providers need to be more compassionate about perspectives at EOL care.

Communication in EOL also focuses on providing emotional supports such as helping to relieve stress among family members and the dying person, and listening to the narrative of the dying person (Wittenberg-Lyles, Goldsmith, & Ragan, 2010). While the listening and comforting approaches might contradict a medical provider’s rational and professional identity, enormous efforts from health-care researchers propose that these approaches can achieve effective communication (e.g., Barton, Aldridge, Trimble, & Vidovic, 2005; Curtis et al., 2001). More detailed information about the communicative approach to improving EOL conversation will be discussed in the next section.

Movement to Normalize the Dying Process

As described in the previous section, dying has become an increasingly medicalized process, and the interactions with terminally ill patients tend to be influenced by negative attitudes about death and dying. This cultural shift raises widespread concerns regarding the loss of patient autonomy. For instance, most of older patients prefer to die at home, but they rarely do (IOM, 2015). As the main role of knowledge and decision-making changes from patients/family members to medical providers, the chances for futile care increases (i.e., unnecessary medical interventions that cause harm or discomfort to the patients). A study that surveyed medical providers in Western European intensive care units (ICU) discovered that ICU admissions are frequently limited by the availability of beds across Europe, yet 73% of intensivists still admit patients with no hope of survival (Vincent, 1999). The same study showed that when treating patients with no hope of survival, 40% of medical providers will deliberately administer large doses of drugs until death ensues. These invasive and costly interventions during the EOL tend to sustain one’s lifespan without improving the quality of life. As a result, several policy movements aim to improve EOL care and communication by empowering patients in decision making and providing home-like medical services at EOL (IOM, 2015). Quill (2000) proposed that initiating end-of-life discussions earlier and more systematically could allow patients to make more informed choices, achieve better palliation of symptoms, and have more opportunity to work on issues of life closure.

In fact, those movements focus on not only eliminating the intergroup difference but reducing people’s negative attitudes about death and dying. Patient empowerment movement, which involves training medical staff to work with patients and family as a team, can be used to reduce intergroup. This team-based approach aims to decrease identity difference among family members, the dying person, and medical staff. In addition, promoting death and dying communication earlier in the lifespan can also help to normalize the dying process. The following section delineates the benefits and limitations of three current movements that aim to eliminate communication dysfunction and intergroup conflict.

Advance Care Planning Discussion Before the EOL

During EOL care, having advance care planning ensures patient autonomy and can eliminate the social death stereotype. Advance care planning (ACP) refers to a formal or informal plan (can be written or via discussion) regarding someone’s treatment preference at the EOL, and it is centered in communication. The formal ACP, also called an advance directive, includes a living will and durable power of attorney (DPAHC). A living will is a list of statements regarding the treatments (e.g., ventilators, feeding tubes) that an individual would want or not want at the EOL. DPAHC is a legal document designating a specific individual (i.e., surrogate) who will make decisions on behalf of the patient in the event that he or she is incapacitated. The assigned surrogate is usually a family member of the patient. The informal ACP can just be a discussion about preference with the dying person.

ACP improves EOL communication and decreases intergroup conflicts such as patient-family member or patient-provider disagreement. A general conversation about the value (e.g., “I do not want to be a vegetable”) and global preferences (e.g., “I don’t want any pain”) provides family members with an idea of how to represent their loved one’s wishes. This conversation helps people prepare for death and dying early on, and can help reduce uncertainty toward death. A longitudinal intervention program followed 309 elderly patients (154 received ACP vs. 155 in the control group) and demonstrated that ACP improved end-of-life decision making as well as patient and family satisfaction (Detering, Hancock, Reade, & Silvester, 2010). They found that ACP reduced stress, anxiety, and depression for the family members. In addition, a bereaved family member’s report of completion of an ACP was associated with decreased family caregivers’ depression symptoms as well as better communication with medical providers. The study found that family members were less concerned with physician communication, and more likely to be informed about what to expect at the EOL (Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007).

ACP discussions help people to retain their “human” identity by providing opportunities to customize the treatments at EOL, and make the dying process less negative (Doukas & Hardwig, 2003). ACP provides personalized treatments that are able to treat dying people as a “normal” human being instead of focusing on their dying identity. A systematic review supported that ACP can increase compliance with patients’ EOL wishes, prevent hospitalization, and increase the use of hospice and palliative care (Brinkman-Stoppelenburg, Rietjens, & van der Heide, 2014). The compliance with EOL wishes can be a core component of experiencing a “good death.” In addition, all the decisions about ACP involve extensive communication about treatment preferences at EOL in addition to beliefs about death and dying; in other words, these discussions provide unique opportunities for sharing information about death and dying. This information can help people be more prepared and less anxious when the time comes.

A current issue regarding ACP is people’s delay and avoidance to have this discussion (Luth & Carr, 2015). Since ACP conversations usually are between the dying (or the one closer to dying) and the non-dying, negative attitudes toward death and dying predict people’s communicative behavior. The negative attitudes toward death and dying predict avoidance of talking about a spouse’s end-of-life preferences (Rafferty, Cramer, Priddis, & Allen, 2015). In addition, when a patient is diagnosed with a life-threatening illness, family members and patients usually focus on defeating the disease, avoiding the death, and being optimistic about the outcome. The family often prefers not to consider the possibility of death (Nedjat-Haiem et al., 2016), so they avoid and postpone ACP. As a result, family member surrogates may not fully understand the dying person’s preference due to lack of communication. Family members then rely on previous implicit conversations or long-shared family history to assume the preferences of the dying person; however, this information can oftentimes be inaccurate (Pecchioni, 2001).

Since communication is fundamental to adopt ACP, simply having “a conversation” about death and dying between patient and family member surrogates is not enough. A quality communication that is able to manage those difficult conversations and address the appropriate topic is important. What really matters is having a “good” conversation that incorporates politeness (e.g., face-saving strategies) and paying attention to the relationship during the advance planning discussion (Scott & Caughlin, 2014). Communication efficacy is not only the key factor to initiate EOL conversation but also to mediate the association between relational quality and avoidance of EOL preference (Rafferty, Cramer, Priddis, & Allen, 2015). In addition, the discussion needs to include specific end-of-life values and preferences such as the location of death, worst-case scenarios, and the option of stopping treatment (i.e., patient’s wish to stop life-sustaining treatments; Hines et al., 2001).

Palliative Care Movement and EOL Conversations

Palliative care, including hospice, opens up the opportunity for meaningful death and dying conversations, which can eliminate negative stereotypes toward death and dying. The hospice philosophy of care is concerned with helping terminally ill patients and families experience a good death; that is, a death free of physical, psychosocial, and spiritual pain (Leming, 2003). Thus, hospice services, as one form of palliative care, provide the opportunity for family members to spend time together, strengthen the relationship with the loved one, and say goodbye, which are all indicators of a “good/dignified death.” Singer, Martin, and Kelner (1999) found that when dying patients had discussions with their loved ones, they seemed to feel less isolated in the face of death. These discussions also relieved patients’ loved ones from the burden of having to make treatment decisions alone.

EOL communication between the dying person and family members is as valuable to the surviving partner in the conversation as it is to the dying one because the conversation tends to have broader psychosocial and spiritual meaning. Keeley (2007) indicated five types of messages that provide valuable experiences and relational satisfaction during EOL communication to the surviving partner and the dying one: love, identity issues, spirituality/faith, everyday talk, and difficult relationship talk. The main argument for Keeley (2007) is that final conversation involves more than pain, caregiving, dying, and funeral arrangements. Dying offers important opportunities for growth, intimacy, reconciliation, and closure in relationships.

Health professionals (e.g., medical staff, social workers, hospice volunteers) in the hospice setting also have better training in patient-centered communication and comforting patients and family members compared with the medical staffs in other health-care settings (Csikai, 2006). The patient-centered communication approach encourages medical providers to prioritize family members and patients’ needs as their most important concerns. Wittenberg-Lyles, Goldsmith, Sanchez-Reilly, and Ragan (2008) proposed that palliative nurses should adopt a team-based/family communication instead of physician-patient dyadic communication (Wittenberg-Lyles et al., 2008). For example, the well-known patient-centered COMFORT initiative outlines the tenets of narrative nursing, including Communication, Orientation and Opportunity, Mindfulness, Family, Oversight, Reiterative and Radically adaptive messages, and Team (Wittenberg-Lyles et al., 2010). The team-based approach in palliative care can be viewed as an effort to reduce the group differences between patient and provider. This approach emphasizes that medical providers, patients, and family members are one collaborating group working on the same goal: proving comfort to the patients. As a result, the interactions within palliative care have less intergroup conflicts (IOM, 2015).

Despite the benefits of palliative care, it is difficult for patients, family members, and even medical staff to initiate the decision to transfer patients from a critical care unit to palliative care because this decision can represent the marker of death (Zimmermann, 2007). The marker of death, which represents the dying group, has also been negatively viewed. The resistance to talking about these care services can be found in patients, families, and even medical staff due to an unrealistic holding to hope and denial of death (Callahan, 2009). Eventually, this leads to delay of hospice and palliative service. Delaying admission to hospice and palliative care can create disempowering experiences for patients and families, such as unnecessarily aggressive treatments (Gozalo, Plotzke, Mor, Miller, & Teno, 2015), higher costs, and lower satisfaction (Brumley et al., 2007). In 2012, the median stay in hospice was only 18.7 days, and nearly two-thirds of those admitted died in less than 30 days (National Hospice and Palliative Care Organization, 2014). Thus, to decrease avoidance of death-related conversation, future research can focus on establish health messages that will not arouse people’s negative attitudes toward death and dying.

ICU Decision Making and Family Conference

Medical decision making in ICU is highly dependent on medical staff and family members as only 5% of the patients are capable of participating in these decisions (Flory et al., 2004). More than 70% of ICU deaths in the United States take place after a decision to withhold or withdraw life-sustaining treatments or forego resuscitation attempts. Communication with health-care providers is crucial to supporting families through these emotionally difficult decisions ((Azoulay et al., 2000). However, there are intergroup tensions between family members and medical providers. Barton and colleagues (2005) found that during ICU decision making, physicians hold to medical ethics that account for medical futility and patients’ wishes, whereas families hold an ethic of personhood that accounts for the loss of human consciousness. The final consensus should be made by a co-constructed decision based on both ethical perspectives with the “right” decision for patients (Barton, 2007).

The themes in ICU decision making are contradictive dialectal tensions such as killing or allowing to die, death as a benefit or a burden, and honoring the patient’s wishes or following the family’s wishes (Hsieh, Shannon, & Curtis, 2006). The decision of withdrawing life support is usually combined with resentment or guilt (Radwany et al., 2009). Withdrawing life support can indicate killing patients actively or allowing patients to die naturally. When family members’ wishes go against the patient’s wishes, this emotionality versus rationality contradiction creates a large amount of emotional burdens and conflicts (Hsieh et al., 2006; Ohs, Trees, & Gibson, 2015). The families who have negative experiences after making decisions tend to have a more difficult time accepting the decision that was made (Radwany et al., 2009). Thus, a family conference held by medical providers provides an opportunity for respectful and well-prepared communication before, during, and after ICU decision making. As a result, the family conference can alleviate the burdens of family members and intergroup tensions between the medical provider and family members.

The goal of the family conference is to “promote open sharing of information and communication and to enable the care providers and family to act as a team” (Thompson & Cusella, 2014, p. 16). Again, this team-based approach can eliminate intergroup conflict. As a result, consensus about care and treatment will emerge through such discussions. Clinicians usually hold a family conference to assist family members with difficult decision making. More and more attention has been put on training medical staff to hold a good family conference. Curtis and colleagues (2001) established detailed communicative activities and components for nurses and physicians to facilitate communication before, during, and after the family conference. The key component to successfully holding a family conference is taking family members’ knowledge, concerns, and perspectives in decision making. In addition, Hsieh et al. (2006) observed that clinicians adopt two specific communication strategies based on the need of family members in response to difficult decision making and contradictions: decision-centered strategies and information-seeking strategies. With the above communicative approach, a family conference helps the family members to make a difficult life decision smoothly.

Future Research and Discussion

Besides the above movements that focus on improving communication in the medical process at the EOL, future research can continue to test some ways to bring the awareness of death and refine the theoretical approach on communication about death and dying.

Contact With Death and Dying

Increasing contact experience with the dying can reduce negative attitudes toward death and dying. Intergroup contact theory states that attitudes toward outgroup members can be changed through positive contact (Allport, 1954), so having contact with death and a dying person can be a powerful intervention to eliminate intergroup conflict and stereotypes about death. Unlike the above policy movements that focus on “solving” the problems using the communication approach, having contact with death and a dying person can “prevent” the communication problems through intergroup contact. Having close contact with a dying person is uncommon for most people, especially the younger group, but these influential experiences prepare people for when the time comes (Keeley & Kellas, 2005).

There are several forms of having contact with a dying person or a person who has experience with death and dying. The first one is to have direct face-to-face contact. Programs like Death Café1 and Death over Dinner2 offer opportunities for the general public to have interactions with those who have experiences with death and dying all around the globe. These programs direct discussions about death with the public in a non-judgmental, open-minded, and friendly environment, which can be a key component for positive contact (Allport, 1954). The objective of these non-profit organizations is to increase awareness of death with a view to help people make the most of their lives. Since these programs are still in the preliminary stage, there is no research that evaluates the benefits of these programs. Outcomes and the process of this type of death contact should be examined.

Another form of contact with death and a dying person can be imagined contact—a relatively new indirect contact strategy. Imagined contact demonstrates similar effects to real contact in that it can decrease intergroup anxieties, and change stereotypes and negative attitudes toward other social groups (Crisp, Husnu, Meleady, Stathi, & Turner, 2010). The researcher found that having an imagined contact with a more positive portrayed older adult led to more positive communicative patterns such as humor and accommodation (Chen, Joyce, Harwood, & Xiang, 2016). As dying and aging are highly correlated, there is enormous potential in using this concept to study communication about death and dying. Having imagined contact with a dying person can generate vivid experiences with the dying person, and it is highly involved by the non-dying person.

Contact need not occur face to face; it is also effective when it occurs over vicariously or parasocially through media narratives (Ortiz & Harwood, 2007). Mass media is a prominent outlet for experiencing death and dying. These sources provide a wide variety of death and dying stories that offer an opportunity to understand interpersonal communication during the EOL period (Sullivan & Greenberg, 2013). By viewing death and dying narratives, the audience is moved to contemplate and reflect on the meaning of life and questions about the human condition (Oliver & Raney, 2011). Researchers even used medical dramas as materials to teach medical students about empathy and compassion. This method was successful in promoting positive attitudes toward death and dying (Deloney & Graham, 2003). Nevertheless, media narratives may not always be accurate. Examples of unrealistic death narratives include underrepresentation of older adults in news, TV, and movies; overly sensational and alarming message in the news; and a focus on relatively rare and novel illnesses instead of the illnesses that actually present a higher risk to audience members (Robinson, 2015). The effects of media on people’s attitudes toward death and dying remain unknown and require more evidence to clarify.

Potential Implications for Communication Theory

Despite the fact that there are some EOL research studies from the medical field, a theoretical examination of communication about death and dying is still limited. The current communication-based research that addresses the death and dying discussion tends to be qualitative (e.g., interview or ethnography) in nature. Researchers tried to make sense of the tensions during conflicts and discussions and understand the meanings of death and dying by applied relational dialectic theory (e.g., Considine & Miller, 2010; Hsieh et al., 2006; Ohs et al., 2015). There is literature-discussed medical ethics and law (e.g., Barton et al., 2005; Lawrence et al., 2012). Few quantitative research studies applied uncertainty theories such as problematic integration, the theory of motivated information management to predict the adoption of advance care planning (Hines, 2001), and topic avoidance (Rafferty et al., 2015). However, there are other theories that have potential to guide death and dying communication.

Communication accommodation theory and politeness theory can provide guidelines in communication toward death and dying since these interactions are identity-driven and face-threating acts. On one hand, communication accommodation theory aims to explain why and how people adjust their communicative behaviors due to the identity difference, and the researchers proposed four types of accommodation strategies: approximation, interpretability, discourse management, and interpersonal control (Gallois & Giles, 2015; Giles, 2016). On the other hand, politeness theory aims to unfold people’s politeness adjustments when the conversation hurts or challenges people’s self-image, and the researchers proposed five politeness strategies: positive politeness, negative politeness, bold-on-record strategies, off the record, and avoidance. The combination of the accommodation strategies and politeness strategies can be used to explain how people communicate about death and dying (e.g., in what condition people adopt accommodation or politeness strategies), why people tend to use specific communicative patterns (e.g., why certain strategies are more commonly used), and the possible outcomes of the interactions (e.g., which strategies are better in which context of interaction).

Cultural Sensitivity and Awareness

Culture can be a determinant factor that influences death and dying interactions such as EOL concerns and practices, death anxiety, and death acceptance. In some cultures, such as Native American and Buddhist practices, death is simply a graduation from one life to another that will begin shortly thereafter. A case study on one multigenerational Native American family found that positive attitudes about death and dying allowed them to peacefully and smoothly adapt to difficult life transitions, such as the death of a grandparent (Pitts, 2011). In addition, because of their beliefs about death and dying, all family members spoke comfortably about death regardless of their ages. Thinking or talking about death may be a positive practice that reminds people about the meaning of life.

Death Awareness

Most of the current research focuses on using a communication approach to improve EOL care; reduce uncertainty; reduce stress, anxiety, and depression in surviving family members; EOL decision making; and patient and family satisfaction. Rarely did the researchers focus on raising death awareness in life. Adding perspectives of intergroup communication expands our understanding and gives rise to potential reasons behind dysfunctional EOL communication. Furthermore, it may provide solutions to improve the quality of care and break the cultural taboo about death. Death is a life lesson, and it comes along with finding the meaning of life. A long-time best seller book, Tuesdays with Morrie, states that “the truth is, once you learn how to die, you learn how to live” (Albom, 1997, p. 84). The best way to understand the meaning of life is via communication about death and dying.

Further Reading

Curtis, J. R., Patrick, D. L., Shannon, S. E., Treece, P. D., Engelberg, R. A., & Rubenfeld, G. D. (2001). The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement. Critical Care Medicine, 29, N26–N33.Find this resource:

Giles, H., Thai, C. L., & Prestin, A. (2014). End-of-life interaction. In J. F. Nussbaum (Ed.), The handbook of lifespan communication (pp. 405–424). New York: Peter Lang.Find this resource:

Gold, D. T. (2011). Chapter 17—late-life death and dying in 21st-century America. In R. H. Binstock & L. K. George (Eds.), Handbook of aging and the social sciences (7th ed., pp. 235–247). San Diego, CA: Academic Press.Find this resource:

Harwood, J., & Sparks, L. (2003). Social identity and health: An intergroup communication approach to cancer. Health Communication, 15, 145–159.Find this resource:

IOM (Institute of Medicine). (2015). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academies Press.Find this resource:

Keeley, M. P. (2007). Turning toward death together: The functions of messages during final conversations in close relationships. Journal of Social and Personal Relationships, 24, 225–253.Find this resource:

Keeley, M. P., Giles, H., & Nussbaum, J. F., (2015). Introduction: Communication at, for, and about the end of life. In J. F. Nussbaum, H. Giles, & A. K. Worthington (Eds.), Communication at the end of life (pp. 1–7). New York: Peter Lang.Find this resource:

Kemper, S., & Harden, T. (1999). Experimentally disentangling what’s beneficial about elderspeak from what’s not. Psychology and Aging, 14, 656–670.Find this resource:

Kübler-Ross, E. (1969). On death and dying: What the dying have to teach doctors, nurses, clergy and their own families. Abingdon, U.K.: Taylor & Francis.Find this resource:

Luth, E., & Carr, D. (2015). End-of-life planning and health care. In L. K. George & R. H. Binstock (Eds.), Handbook of aging and the social sciences (8th ed., pp. 375–390). Oxford: Elsevier Science & Technology.Find this resource:

Rafferty, K. A., Cramer, E., Priddis, D., & Allen, M. (2015). Talking about end-of-life preferences in marriage: Applying the theory of motivated information management. Health Communication, 30, 409–418.Find this resource:

Scott, A. M., & Caughlin, J. P. (2014). Enacted goal attention in family conversations about end-of-life health decisions. Communication Monographs, 81, 261–284.Find this resource:

Singer, P. A., Martin, D. K., & Kelner, M. (1999). Quality end-of-life care: Patients’ perspectives. Journal of the American Medical Association, 281, 163–168.Find this resource:

Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L., & Tulsky, J. A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association, 284, 2476–2482.Find this resource:

Thompson, T., & Cusella, L. (2014). Death, dying, and communication.Oxford Bibliographies in Communication. New York: Oxford University Press.Find this resource:

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Notes:

(1.) Death Cafe (http://deathcafe.com/) is designed for participants to discuss death while having a meal.

(2.) Death Over Dinner (http://deathoverdinner.org/) is designed for participants to discuss death while having a meal.