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date: 15 September 2019

End of Life Communication

Summary and Keywords

End of life communication includes both verbal and nonverbal messages that transpire following a diagnosis of a terminal illness and death. The circumstances that occur at the end of life create opportunities for unique and important communication. Specifically, communication at the end of life is impacted by numerous and complicated factors: First, cultural views on death and dying often determine what is talked about, when it can be talked about, and who is included in the conversations. Second, the fears, desires, and needs of the terminally ill must be taken into account at the end of life as it is their personal end of life journey. Third, the nature of the relationships between the terminally ill and their family and friends have tremendous influence on the nature and topics of conversations that will be shared. Fourth, interactions with healthcare professionals (preferably with palliative care specialists) tend to be more task focused, emphasizing end of life decision making and comfort care for the terminally ill. Fifth, as people are tending to live longer with terminal illness and often doing so far from their family, professional caregivers and hospice volunteers are also engaging in meaningful and significant communication with the terminally ill.

Communication at the end of life often determines whether or not the dying are allowed to die with dignity, with some control over their final wishes, and whether they are ultimately able to obtain some peaceful closure. Within close relationships communication at the end of life has the potential for authentic conversations that bring people closer, heal old wounds, and allow the terminally ill and close others to create some final memories and to say goodbye to one another. Communication at the end of life with health professionals has the potential for both the terminally ill and their family members to have greater satisfaction with end of life decisions and control of pain for the terminally ill, as well as better outcomes regarding grief and bereavement following the death for family members. For hospice volunteers and professional caregivers, communication at the end of life teaches the necessity and complexities of interactions at the end of life for the larger society.

Keywords: family caregiver, culture, death, doctor-patient communication, final conversations, hospice, identity, nonverbal, palliative care, spirituality

The Impact of Culture on Communication at the End of Life

Death is framed by specific cultural expectations and beliefs. The great range of cultural norms, rituals, customs, and expectations pertaining to death and the afterlife is a result of an essential need to make sense of and to cope with death (Aiken, 2001). All cultures attribute specific meanings and significance to death and dying, and these meanings are influenced by the group’s religious, philosophical, and cultural belief systems.

Cultural differences highlight concepts and core values concerning “self-reliance versus interconnectedness,” “individualism versus collectivism,” and “interdependence versus independence,” which are all factors relevant to the communication that occurs at the end of life (EOL) (Bullock, 2011). Each of these factors impacts individuals’ decisions and communication regarding advance care directives, expression of emotions, discussions regarding the afterlife and spiritual beliefs, and even whether or not the impending death is acknowledged and talked about among family members and with outsiders (Bullock, 2011).

While talk avoidance regarding death is commonplace in the United States (Yingling, 2004), it is further complicated by co-cultural differences and experiences with death and dying (Bullock, 2011). For Caucasian American culture, death is often denied, sterilized, and removed from sight, with the majority of deaths still occurring primarily in hospitals, often while still receiving treatment for the terminal illness (Ragan, Wittenberg Lyles, Goldsmith, & Sanchez-Reilly, 2008). Caucasian Americans are more likely than African Americans to have completed an advance directive and to view hospice care as positive than African Americans (Bullock, 2011). The difference in perceptions regarding death and dying may have a lot to do with previous injustices regarding African Americans’ experiences in the United States (e.g., slavery and syphilis experiments) (Bullock, 2011) or with differences in religious beliefs.

Religious affiliation has been shown to influence views about communication regarding death, and this is especially true for African Americans. For instance, African Americans with a Christian/Baptist tradition generally believe in heaven and an afterlife where the deceased will go to heaven and see God (Lobar, Youngblut, & Brooten, 2006). At the same time, a growing number of African Americans identify as Muslim, which emphasizes spiritual progression in the afterlife (Lobar et al., 2006). Thus, individuals’ perspectives, whether it is one life and then heaven bound or a spiritual progression with reincarnation, ultimately impact what and how death is talked about at the EOL.

Within Hispanic American cultures death is often normalized as a natural part of the course of life. Death is portrayed in art, history, and literature, suggesting that Hispanic Americans have a cultural familiarity with death (Lobar et al., 2006). For instance “the day of the dead” is often celebrated within Hispanic American cultures, where families go to the gravesite to honor the dead with picnics and celebrations. In addition, death and dying is kept within the “familia,” and is supposed to be talked about only within the family and not with others (Kreling, Selsky, Perret-Gentil, Huerta, & Mandelblatt, 2010). Clearly, these cultural norms suggest that communication about death is often held within the family circle.

Native Americans perceive death in regards to balance and harmony in nature. Thus, in many Native American traditions, the worlds of the living and the dead exist simultaneously. For instance, the bodies of the deceased help the earth to produce new life, thereby extending the cycle of life (Walker, 2008). Transitions are seen as being circular—not beginnings or endings (Walker, 2009). According to this belief system, death is an essential part of the cycle of life. In this regard, communication about dying and death does not focus on language that highlights finalities or extreme loss but rather, the continuation of the circle of life.

Asian American views are more complex, as their views about death are influenced by Buddhism, Confucianism, and Taoism, as well as traditional Chinese medicine (Hsu, O’Connor, & Lee, 2009). Specifically, many Asian Americans adhere to specific rules regarding treatment of the dead that reflect back to principles of propriety and filial piety, which include ancestor worship that commemorates the dead and perpetuates the bond between the living and the dead (Yick & Gupta, 2002). Some of the rituals include bringing food and burning paper money at gravesites during an annual holiday (Hsu et al., 2009). Not adhering to these traditions can cause displeasure among the ancestors and result in bad luck. In many Asian cultures, the ghosts of the dead can cause bad luck, ill health, or even death. For instance, early deaths are considered the result of evil or angered spirits (Braun & Nichols, 1997), hence, death is considered a taboo topic because talk about death potentially brings misfortune (Yick & Gupta, 2002).

Clearly, culture impacts communication at the EOL and generates numerous questions that still need to be addressed. What language is used regarding death and dying for different cultures? What are taboo topics during talk about death and dying? What are the nonverbal cues specific to each culture that reveal information at the EOL? How are final wishes and directives talked about within various cultures between the terminally ill, family members, and health professionals? How does society view euthanasia? Who is invited to participate in the EOL conversations and when do the conversations occur during the EOL journey? When and how are children socialized regarding death (i.e., their involvement in the funeral rituals, death themes in children’s stories, games, and rituals)? Lastly, how is bereavement dealt with and communicated about for each culture?

Communication from the Terminally Ill Person’s Perspective

Relatively little is known regarding the communication narratives, needs, and wishes for people who are seriously ill (Ragan, Wittenberg Lyles, Goldsmith, & Sanchez-Reilly, 2008). This is due in large part to ethical dilemmas (i.e., is it appropriate to be conducting communication research on individuals who are dying and perhaps suffering from physical pain, emotional anguish, weakend and impaired states?) (Keeley & Yingling, 2007), as well as to a general lack of opportunity and access to the terminally ill for conducting the necessary research (Ragan et al., 2008). Communication is further complicated at the end of life (EOL) because the conversations often change depending upon the stage of death that the indvidual is currently experiencing. Kubler-Ross’s first book, On Death and Dying, (1997; first published in 1969) was based on her personal experiences and interviews with approximately five hundred individuals whom she helped to care for at the EOL, and as a part of the hospice movement in the mid 1960s in the United States. In her book she encouraged more open discussions regarding the death journey and discussed five stages of death and dying: (1) denial and isolation, (2) anger, (3) bargaining, (4) depression, and (5) acceptance. It has since been recognized that not all indviduals go through all five stages, nor are the stages always linear. Each of these stages is accompanied by verbal and nonverbal messages that are representative of the expression of strong emotions that often occur with family members, clergy, health professionals, and hospice volunteers.

During the 1950s and 1960s, the American culture took a dramatic shift from individuals dying at home surrounded by their family to dying in the hospital. Glaser and Strauss (1965) conducted a groundbreaking ethnographic study that revealed that indviduals at EOL often suspect that they are near death, which leads to one of two communication paths. Specifically, suspicion awareness triggers two potential interaction contexts: (1) mutual pretense that the person is not dying and there is continued talk about the person getting well or (2) open awareness where the patient becomes an active participant in the conversations about the terminal status of his or her illness. Within the context of mutual pretense, all participants must be able to pretend and communicate the charade that the person is in fact not dying. This pretense is often created to keep hope for either the terminally ill person or family members who can’t accept the terminal diagnosis. Within this context active efforts are used to sustain life and to continue aggressively treating the illness. The context of mutual pretense ends the minute that one of the particpants can no longer carry on the lie or someone inadvertently reveals the truth. Forty years later Groopman (2004) affirmed that these practices still occur within many cultures and communities. Unfortunately, when the interaction context is one of mutual pretense, there is often an erosion of trust between the terminally ill patient and doctor, and the sense of betrayal may extend to others within the network (e.g., other health professionals, clergy, family members). Within the context of open awareness, honest and forthcoming communication between the health professionals (especially doctors) should explicitly describe the patient’s specific health conditions, typical disease trajectories, and options for treatment (both continued medical treatment for the disease and palliative care treatments), as well as open dialogue regarding what quality of life looks like for the patient and what represents a good death (Ragan et al., 2008).

Even within the context of open awareness, many people with a terminal illness are often not aware when their disease has progressed to an incurable stage, and they do not grasp the realistic parameters for their life expectancy (Hagerty et al., 2005). The reoccurrence of cancer or progression of other life-threatening conditions is the next stage of illness whereby patients should be clearly informed about the seriousness of their condition and be provided information about early-stage palliative care. Unfortunately, many doctors and other health professionals are not very adept at communicating with clarity the truth about the illness with their patients (Hagerty et al., 2005). In their efforts to be direct, doctors may communicate the bad news in a way that is perceived as inconsiderate and cold; or in their efforts to try to keep some positivity in the message, they provide inadequate or vague information concerning the prognosis (McCormick & Conley, 1995). When receiving bad news, many patients are not prepared to hear that there are no other options for treatment for the disease, or they hear only the parts of the diagnosis that they can handle. Both of these communication outcomes when receiving bad news mean that individuals often need to have the conversation repeated to them over time in sensitive, caring, and clear ways (Ragan et al., 2008). The need for repetition for revealing bad news suggests further challenges for doctors who often have limited time and energy (Ragan et al., 2008). Family members may also create obstacles for clear and direct messages between themselves and their dying loved ones or between their dying loved ones and their doctors because family members are not ready to deal with the truth (Caughlin, Mikucki-Enyart, Middleton, Stone, & Brown, 2011). Overall, individuals are most satisfied when their doctor communicates directly to them regarding their terminal diagnosis and provides a clear prognosis in a timely and sensitive manner, thereby allowing them to make more informed decisions about their next forms of treatment and about how they want to spend their final months, weeks, or days of life (McCormick & Conley, 1995).

Most doctors and other health professionals have little to no training in giving bad news and in the specialty area of palliative care (Ragan et al., 2008). Politics and media also impact how communication at the EOL is viewed. For instance, at one point during negotiations concerning the “Patient Protection and Affordable Care Act,” there was a proposal to educate physicians and to pay them for their time to have discussions with their terminally ill patients about palliative care treatments. The phrase “death panels” was used by some politicians and was used heavily by the media, thereby ending the proposal (Stromberg, 2015). Many people equate the term palliative care with hospice care. Palliative care is more inclusive and covers all treatment that prioritizes comfort, care, and pain relief once a patient’s illness has progressed to an advanced, incurable stage and may last for many months or even years (Ragan et al., 2008). Hospice is more generally associated with the EOL, specifically, the final weeks and months of patients’ lives (Ragan et al., 2008). Research has shown that patients who enter palliative care sooner rather than later live longer than those terminal patients who postpone palliative care and ultimately have a better quality of life at the EOL (Wittenberg-Lyles, Goldsmith, Ferrell, & Ragan, 2012).

In addition, individuals experiencing terminal illnesses are faced with numerous communication challenges that need investigation if there is to be greater understanding about communication at the EOL. Some of the communication challenges are: the navigation of the terminally ill’s identity as it changes in the midst of physical, social, and personal circumstances (Ragan et al., 2008); the performance of self at the EOL to a variety of audience members (i.e., life partner, children, parents, friends, co-workers, health professionals, and clergy) (Keeley & Koenig Kellas, 2005); the discussion of strong and often times negative emotions by seriously ill individuals in the face of impending death (i.e., fear, sadness, anger) (Keeley & Generous, 2015); the role and importance of nonverbal communication during the final stages of the death process (Manusov & Keeley, 2015); the negotiation and communication of the individuals’ final wishes (i.e., death directives, EOL care, when and how to stop treatment of the illness, preference for place of death, and patients’ instructions concerning the arrangements following their death) (Ragan et al., 2008).

Final Conversations with Family and Friends

Terminally ill individuals often look for meaning in their lives and prioritize their relationships at the end of life (EOL). It is through communication with their loved ones that terminally ill individuals frequently find greater meaning about life, death, and what their lives have exemplified for themselves and others. Communication at the EOL is also an opportunity for both the terminally ill individual and family members to have closure. One innovative program of research explores the perspective of those who go on living (e.g., family and friends of the terminally ill) through the use of retrospective interviews with both adults (Keeley, 2007) and children (Keeley et al., 2014) and the development of a new scale exploring final conversations (Generous & Keeley, 2014).

Final conversations (FCs) are any and all communication (verbal and nonverbal) between the terminally ill and their loved ones that begins with the terminal diagnosis and ends with the death. FCs may take place months, weeks, days, or hours prior to the death and may occur only once, but are often a series of conversations (Keeley, 2007; Keeley et al., 2014). Six themes emerged from the research exploring FCs with both adults and children: love, identity, religious faith/spiritual beliefs messages, everyday talk, difficult relationship talk (Keeley, 2007; Keeley et al., 2014), and instrumental death talk (Generous & Keeley, 2014). Children also stated that they wanted more open discussion regarding death and dying between adults and children (Keeley & Generous, 2014).

Messages of Love

Love expressed in final conversations (FCs) focuses on messages of intimacy, commitment, and affection for one another (Keeley, 2004b). Messages of love were expressed both directly and indirectly. Direct verbal statements included: “I love you” and “you’re the best thing that ever happened to me.” For example, as published in Keeley and Yingling (2007), Sandra shared a story about her surrogate grandfather’s direct message of love:

“I have to say this, I have to you know let this out . . . Let yourself, um, love somebody. You know, because that’s the most important part of life . . . the most important person is the person that’s there until the end. That’s the most important person in your life . . .” He was holding his wife’s hand the whole time. And then he leaned over and gave her a kiss. He was very affectionate with her.

Indirect verbal messages included simple acknowledgements that they had been important to one another, without stating the word love, but acknowledging that love was the message interpreted. For instance, as first revealed in Keeley and Yingling (2007), B. J. stated that her mother-in-law:

“Never once in her life [did she] tell me she loved me. But I knew she loved me. And, and what she said was enough, you know, she didn’t have to say the word ‘l-o-v-e.’” B.J. understood from the reciprocity of her words “I feel the same way about you” that Silvia meant to send her a love message.

Nonverbally, people expressed affection through a final look at the moment of death, holding hands, kisses, and hugs. For instance as first highlighted in Keeley and Yingling (2007) Maya revealed:

We gave each other a lot of hugs and just a lot of kisses on the cheeks and when she was dying, she like, the day she died she couldn’t talk and so we were just all around her bed, just like holding her hands and saying how much we loved her.

Indirect nonverbal messages of love included spending time with one another, and the giving of a final gift or memento. For example as revealed in Keeley et al. (2014), Hannah, one of nine children whose father was dying shared the following story:

I think like about a week before he died, um people that we know, like they’re really good friends of ours, they got little hearts from Build-A-Bear and he kissed all of them and then like the day after he died, she took us to Build-A-Bear and we each got to stick our heart in our Build-A-Bear.

The expression and the experience of love was the main concern for both the terminally ill and close other.

Messages of Individual and Relational Identity

Identity messages expressed in final conversations (FCs) highlight the importance of valued others in the creating and the appraisal of the “self.” Family members and friends are important reflections regarding individuals’ constant progression and judgement of themselves (Keeley, 2007). At the end of life (EOL), many individuals believed that the dying had precious and genuine evaluations for family members. Fletcher’s 2002 research suggested that death is often accompanied by an identity crisis for individuals. FCs research confirms that many individuals at the EOL found themselves examining, reevaluating, and at times redefining themselves because of their FCs. Identity messages were essential for learning and corroborating information about themselves. For instance, many identity messages contained statements that revealed perceptions that the participants’ loved ones had about them. Tory’s brother Jacob, for example, reportedly (Keeley, 2007) shared a message with her that gave her new information about herself. She stated, “He goes, ‘I’m going to miss the fact that you always have a band aid for my wounds.” This message and others like it, contained new information for the recipient.

Messages focused on identity were remembered, thought about, and continued to be meaningful for many years following the FCs. For example, Leno, who was 12 when his little brother died, was told by his brother (Keeley et al., 2014): “I was the most fun brother that he ever had.” Identity messages often focused on personal characteristics of the family member (e.g., attributes, expectations, goals, strengths, and weaknesses), offered advice regarding what they should do in the future or how they should go on (e.g., go to college and study hard, marry someone who will help you to reach your dreams), or were praises and affirmations of something specific (e.g., you’re beautiful, brave, smart) (Keeley & Koenig Kellas, 2005). One powerful example as first revealed in Keeley et al. (2014) comes from Jayne who was fourteen when her mom died, her mother told her:

‘You need to be shared with the world.’ She really cared about me. My mom and I talked about it and she said ‘I know it’s going to be hard on you but it’s ok to move on. It’s ok for you to have other mother figures.’ She really cared about me. She wasn’t selfish with me, which I appreciated.

Messages of Spirituality and Religion

Religious faith/spiritual belief messages focused on either traditional religious theology or the sharing of spiritual experiences (Keeley, 2004a, 2009). Final conversations (FCs) that focused on traditional theology included: praying, receiving communion, reading the Bible, and the expression of direct declarations of faith in a higher power and of heaven. For instance, as first highlighted in Keeley (2004a), Karen’s father said to her, “You don’t need to worry about me . . . I’m going to heaven . . . Jesus is my savior, and he is yours too. And don’t you ever forget it . . . I’m going to heaven and I’m going to be fine.” FCs that concentrated on the sharing of spiritual experiences included: feeling the energy of the soul from the dying person leave their body, feeling the spirit of a dead loved one in the room, witnessing the terminally ill talking with dead loved ones or angels, and hearing voices in the room with the dying person hours before the death. For instance, as revealed in Keeley and Yingling (2007), Mary shared:

“I heard fast, high-pitched whispering; I turned around and asked my sister what she had said. Colleen had not said anything and did not hear the whispering that I had; again, I turned to my mother, held her hand and again began to pray. For a second time, I heard the fast, high-pitched whispering. I turned around in time to see my sister sit straight up and ask me: ‘That wasn’t you?’ No it wasn’t. And this time there were two people who heard the whispering around the bed.” Both sisters believe that it was their mother’s angels talking with her, telling her that it was okay to let go of the pain, and to show her what heaven looked like so that she would have no fear. Their mother died the next afternoon.

Sharing messages pertaining to religious faith/spiritual beliefs often helped ease suffering and fears.

Everyday Communication

Everyday communication in final conversations (FCs) took into account routine interactions (e.g., watching favorite television shows or movies, listening to music, reading bedtime stories, and sharing meals together) and mundane conversations (e.g., favorite hobbies or activities, school, work, sports, gossiping). Everyday talk appeared in both adults’ and children’s FCs, but it was the most prominent theme for children and adolescents (Keeley et al., 2014). For example, Ally, whose mother died when she was 14, stated; “most of them would be about like what would [happen] during the day. If something big happened at school or something I had coming up.” Everyday communication provided structure in the midst of chaos, gave people moments of normalcy, and allowed people to continue their relationship with one another until the very end (Keeley & Baldwin, 2012). Family rituals as enacted through the daily talk and routines act to buffer the family members against times of stress and transition (Spagnola & Fiese, 2007). Ritualized interactions are also sources of entertainment, stimulation, and fun for family members (Baxter, 1992), which are valuable and treasured by family members in the midst of the sadness, anger, and fear that often accompany the dying process (Keeley & Yingling, 2007). Lastly, rituals that enact joint family activities build and sustain intimacy, cohesion, and communication, which consequently enhance individual and relational well-being (Bruess & Pearson, 1997).

Everyday acts of communication may appear unremarkable and can slip by unnoticed, but with a closer look, these ordinary moments constitute the majority of relationship interactions. Sam stated:

We realized at the time that the interactions that were going on were really important. And it wasn’t just that we were videotaping . . . some kind of major event. We were videotaping the mundane . . . unimportant things on the surface, but that there were some real valuable things happening during that, that, sharing. . . . You can see little microcosms of my family on it. (Keeley, 2007)

Difficult Relationship Talk

Difficult relationship talk in final conversations (FCs) helped the participants to “clean up the mess” that was representative of their relationship prior to the terminal diagnosis. While these conversations didn’t heal all wounds, it reduced participants’ regrets because they had begun to deal with their issues with the terminally ill prior to the death. These participants had a strong desire for understanding, healing, and for some reconciliation, while at the same time avoiding more heartache in the process. Katherine gives a good example of what the difficult relationship talk looked like:

One evening she [her mother] was just absolutely throwing a fit when she didn’t get her way. . . . You know, I wasn’t really [surprised], I mean I was just, this is my mom, I was used to it. You know, I would just dance to the tune. . . . She was ranting about how nobody loves her. . . . And it just, it just laid itself out there. And I just said, ‘Mom, I love you dearly. And I appreciate everything you’ve done for me all of my life. The reason I’m a school teacher is because of who you are. And the reason [my son is] graduating from high school is because of the grandmother that you’ve been to him.’ . . . I told her that I was sorry that she had cancer . . . there was all this conflict between she and I. . . . And so I cleaned that up. (Keeley, 2007)

Individuals talked about trying to find the courage to engage in the difficult relationship talk, the desire to find the right time to have the desired discussion, and also the yearning to have a positive interaction with the dying loved one before he or she dies.

It is interesting to note that this theme was the only theme not present for children (Keeley et al., 2014). This is most likely due to the absence of children’s cognitive complexity to truly grasp challenges and difficulties in their relationship, as well as the historical time necessary to create these types of relationships.

Instrumental Death Talk

Instrumental death talk in final conversations (FCs) was not found in the original qualitative analyses with adults (Keeley, 2007) and children and adolescents (Keeley et al., 2014). However, this theme emerged as a factor in the construction of the FCs Scale (Generous & Keeley, 2014) and included: the dying’s illness and care; daily activities getting done after the family member has died, and the terminally ill person’s eventual death and funeral (Generous & Keeley, 2014). These messages focus on practical communicative aspects of the death and dying process. Individuals often need to be able to communicate their fears, desires, and needs regarding their terminal illness, as well as their uncertainty regarding death and the dying process (Metzger & Gray, 2008).

While open communication at end of life (EOL) has most recently been encouraged both in scholarship and in practice, it does not always occur. Some individuals manage their uncertainty at the EOL by sidestepping particular conversations such as those included in the instrumental death talk category because they focused too much on the impending death (Caughlin et al., 2011). On the other hand, it is also possible that the terminally ill and others may purposely focus their talk on the instrumental death talk when the relationship is strained, thereby avoiding other difficult conversations (Keeley, 2007), while also managing the uncertainty that is associated with their personal relationships. In relationships that are more strained there may be few mutually agreeable “safe” topics to discuss within these relationships (Generous & Keeley, 2014). In general, the terminally ill and close others at the EOL usually engage in open communication while simultaneously avoiding certain topics, thus protecting others and maintaining optimism.

Challenges of Final Conversations

Chronemics (the nonverbal communication element of time) creates communicative challenges during final conversations (FCs) because the terminal amount of time left before the death creates the impetus for the conversations (Keeley, 2007). Knowing that there is an impending death creates discomfort for some people and frames the conversations between the living and dying (Keeley & Yingling, 2007). Without the diagnosis of a terminal illness, many of the conversations present during FCs would not occur.

With regard to challenges created by FCs, individuals stated that their emotions could hinder their FCs because they were uncomfortable with the idea about talking about death or with a person who was dying, and they were keenly aware that it could be the last time that they talked with the dying person (Keeley & Generous, 2015). Others limited what they said because they always wanted to believe that there was more time to say what was needed; thus, their denial predictably led to them running out of time (Keeley & Generous, 2015). Individuals also recognized that the challenge of limited time altered the way they viewed interaction during FCs. For instance, one person stated: “Trying to fit 30 years of conversations, friendship, and memories into two hours is impossible.” Other challenges identified at the end of life (EOL) between close others and the terminally ill focus on three specific dialectical tensions. Dialectical tensions are the “dynamic interplay of opposing forces or contradictions” (Baxter & Braithwaite, 2006, p. 3). EOL creates a distinctive dialectic context (Foster & Keeley, 2015). Confronting the looming death of a loved one often focuses attention on and creates pressure toward sustaining the life of the terminally ill and their relationship as they know it; simultaneously, the approaching death of the loved one also creates a pressure to pull away from and flee the impending loss because of the sense of loss and emptiness that accompanies the reality of death and the inevitable ending of the relationship as they have experienced it up until that point in time. The three dialectal tensions evident at the EOL are acceptance-denial, openness-closedness, and the expression of emotion–concealment of emotion.

Acceptance-Denial

This tension drew attention to people’s acceptance of the impending death while denying the rationality of death (Keeley & Generous, 2015). Some participants noted their unwillingness to accept the finality of death: “I didn’t want to believe she was terminally ill. I wonder if I didn’t call more because I didn’t want to have it confirmed that she was getting worse.” Individuals during FCs struggled to accept the finality of death while trying to understand that death was inevitable: “It feels surreal. You don’t fully understand the big picture and might not for the rest of your life. The most challenging thing was you knew it was happening but didn’t think it actually would.” One individual also noted that while the acceptance-denial tension was challenging, it provided an opportunity to learn and apply this FC to subsequent EOL conversations. Specifically:

I guess getting over the grim reaper in the room. I have participated in other conversations about death (and even other FCs) since, and I can say that dealing with the issues with my mom when I was 15 made it possible for me to deal well with any conversation about death. (Keeley & Generous, 2015)

Openness-Closedness

This dialectical tension discussed wanting to talk about more with the terminally family member, but being pressured to not disclose too much because of time and limited resources (Keeley & Generous, 2015): “She had limited resources to share with a number of family members, not just me. So my FC was short and ‘public,’ and I felt like I was taxing her to make her talk.”

Other individuals highlighted the difficulty of knowing the “right thing” to say: “Not knowing what to say to ease their sadness.”

Many people struggled with this tension of self-disclosure versus privacy because they wanted to remain respectful of the terminally ill person, by not bringing up or saying something offensive (Keeley & Generous, 2015); “I had to monitor the way I said things because I didn’t want to say something the wrong way and offend or upset her.” In addition, a few participants noted the avoidance of specific topics, such as feelings about death and dying: “My Dad was not big on talking about feelings, etc., so it was extremely hard to bring things up. Also, I did not want to talk with him about dying. He knew it, I knew it, but we didn’t say it. We talked around it.” Lastly, being in front of other family members affected the openness-closedness tension. This makes sense from an external dialectical perspective; that is, relational partners may choose to remain closed while in the company of others to keep certain relational information private (Keeley & Generous, 2015):

I often feel embarrassed when I cry, and I had an audience (other family members) for the truly final conversations . . . but that was challenging with everyone watching/listening.

Expression of Emotion–Concealment of Emotion

While emotion is expected at the EOL, many individuals struggle with what is the most appropriate and effective way to express the wide range of emotions (Keeley & Generous, 2015). Some examples include: “Trying to ‘be strong’ and not express your sadness or fear knowing that your loved one will die”; “Not turning into a crying mess”; “Emotional control. It’s hard for me to control my feelings while my loved one was very strong in controlling hers.” Another individual mentioned the need to leave the communication episode in order to express emotions privately and not in the presence of the terminally ill: “Seeing your loved one suffer and in pain. His heart was failing and he just looked terrible. It was not an easy sight to see, and I often excused myself from the room so I could compose myself again.” Finally, participants noted that the tension regarding whether to express or conceal emotion was intrinsically related to concern for the terminally ill (Keeley & Generous, 2015): “Allowing the terminally ill person to talk and express his feelings about ‘everything’ and being honest with him without yourself breaking down to the point you can no longer help him in his journey.”

This struggle supports Ellis’s (2000) conclusion that the death journey is a shared project that must be negotiated between the terminally ill and their loved ones. The tensions found between family members during FCs echo previous work within EOL communication and cultural norms. The American culture is particularly uncertain about death and how to talk about death (Foster, 2007), creating communicative challenges about what to say and what not to say.

Communication with Palliative Healthcare Specialists

Palliative healthcare specialists include doctors, nurses, social workers, clergy, and counselors who specialize in healthcare at the end of life (EOL). Professional experts at EOL focus on comfort, compassion, and care of the whole individual and their family members (Wittenberg-Lyles, Goldsmith, Ferrell, & Ragan, 2012). They manage health crises that occur during the process of dying, with the aim of supporting a peaceful, pain free, and dignified death rather than focusing on the disease and the treatment of the disease to prolong life. Another important communication job for palliative care specialists is to detect opportunities to engage patients and families about advance care planning, thereby helping the dying to achieve some element of control over their EOL experience.

One groundbreaking perspective took a Narrative Clinical Practice, where communication focused on nurturing discussion as compared to simply exchanging information (Borrell-Carrio, Suchman, & Epstein, 2004). Nurses and other health professionals are encouraged to use communication to honor the lived experiences of both patient and family and ultimately to understand and respect their decisions. Also, this approach asks the palliative specialist to consider the circumstances of the patient’s current life situation and the specific events that are present when the information is being presented (Borrell-Carrio et al., 2004). Thus, a narrative perspective recommends that people make sense of important life events by categorizing them and make meaning of them through stories that help the individuals make sense of the circumstances going on around them (Keeley & Koenig Kellas, 2005).

A second state-of-the-art area of research for palliative healthcare specialists focuses specifically on a communication framework for health professionals called COMFORT (Ragan, Wittenberg-Lyles, Goldsmith, & Sanchez-Reilly, 2008). COMFORT is an acronym that includes Communication, Orientation and Opportunity, Mindful Presence, Family, Opening, Relating, and Team. This framework is a set of universal principles that can be used in the care of patients with life-limiting illnesses and their families. COMFORT encourages nurses, patient, family, and team members to create a collaborative environment for integrated care, from diagnosis to death (Dahlin & Wittenberg-Lyles, 2010).

Communication, calls on health professionals to focus on the stories that are told during clinical interactions to gain knowledge from patients’ narratives about how they are really doing and feeling. Specifically, narratives are created through co-constructed experiences by nurses, health professionals, patient, and family (DasGupta, Irvine, & Spiegel, 2009). A narrative perspective extends medical/biological care to include the psychosocial losses of a patient and family. Palliative nurses, chaplains, and social workers are especially trained to prompt and encourage patients and families to share their stories, to use person-centered messages that acknowledge and accept the genuine emotion that is being experienced, and to identify and understand the communication expectations of patients and families at EOL.

Orientation and Opportunity focuses upon being aware of the patient’s and family’s health and cultural literacy. Health literacy is focusing on their degree of understanding about what is going on with their bodies at the EOL. Specifically, health literacy centers on whether or not the patient and family is familiar with and comprehends the medical terms often used by nurses and other clinicians. Cultural literacy highlights the level of awareness by the palliative healthcare team in regards to the expectations, historical experiences, and norms of the EOL journey that is inherent in each unique culture (Ragan et al., 2008). Paying attention to the cultural literacy of the patient and family is important because culture has a great deal to do with how people deal with the death process and the EOL medical decisions that are made. It is often only through stories that their cultural expectations are discovered. Palliative care professionals must learn to adjust and meet the needs of the patient and family and communicate to them their available options for care in light of their cultural beliefs, understanding of their health circumstances, and their wishes for a “good death.” All health specialists must be careful not to be ethnocentric in their approach, as well as avoid stereotyping and alter-casting, because of the high risk of being incorrect or even offending the patient and family inadvertently (Dahlin & Wittenberg-Lyles, 2010).

Mindful presence asks the health professional to be fully engaged during the whole interaction and to be especially aware of the nonverbal messages displayed by the patient and family members. Palliative care professionals have many jobs to complete at the EOL regarding caregiving. There is quite a bit that can be missed or misinterpreted if the health professional is distracted and not fully attentive to all messages being exchanged. Palliative care professionals have to actively listen and be able to observe the copious amounts of nonverbal cues that are being given that reveal what people are truly thinking and feeling. At the EOL, being mindful includes being comfortable with and accepting the immediacy of the approaching death, valuing the dialectical tensions that are inevitable at the EOL, being able to shift one’s perceptions to be able to empathize with the patient and family, and being open to seeing and doing what needs to be done in the midst of strong emotions (Bruce & Davies, 2005).

Family acknowledges the essential roles that family members play during the EOL process, as well as the needs of the family in the midst of the grief, loss, and stress that is experienced by loved ones during the EOL journey. Some of the jobs that family members fulfill include: meeting the physical needs of the dying person (administering medication, cooking, bathing, etc.), meeting the spiritual and social support needs experienced by both the dying and any of the famiy members, and, lastly, getting ready for life without the dying person. Understanding family communication patterns is critical because families have expectations, norms, and rules that control what can and cannot be talked about (Ritchie & Fitzpatrick, 1990). These patterns can determine whether family members talk openly about illness, dying, and spiritual or religious beliefs regarding an afterlife or if these are taboo topics that are avoided (Wittenberg-Lyles, Goldsmith, Demiris, Parker Oliver, & Stone, 2012). Families also influence who can talk to whom and how often family members talk to one another, and they may also demonstrate the hierarchy in the power, specifically who has the most influence and power within the family (Wittenberg-Lyles et al., 2012).

Openings focuses on the fact that dying is a process that has many transitions regarding the biological, psychological, sociological, and spiritual needs of the dying. There are multiple changes and challenges that occur, and healthcare professionals have to recognize transitions and be adaptable to the changing environment. Tension and anxiety provide palliative care specialists with an opportunity to help family members build trust, to facilitate self-disclosure, and to navigate pivotal points of transition across the illness trajectory. Dealing with difficult topics and enabling patients and family members to make necessary decisions at EOL are two important points on the EOL trajectory.

Relating illuminates the importance of empathy, compassion, and understanding from healthcare professionals with both the patient and family members. The patient and family often have multiple goals and, at times, conflicting goals at the EOL. Thus, it is up to the palliative healthcare professional to find ways to negotiate and relate with the both the patient and family in order to reach a point of understanding and mutual agreement about the EOL care plan.

Team highlights the fact that a good death takes the work of many people working together to ensure the best care possible at the EOL. It is important for all of the team members to recognize how each of the clinical roles contributes to the collaboration, goal attainment, and group cohesion. Good communication strategies are emphasized throughout the entire EOL process.

COMFORT encourages a patient-centered, communication-based framework that focuses on all aspects of the EOL process.

Research examining communication between doctors and patients at the EOL is necessary because Janssen and colleagues (2011) found that doctors in the Netherlands and in the United States often failed to discuss prognosis, life-sustaining treatment preferences, dying processes, or spiritual issues. This failure is often a result of discomfort and a lack of training for doctors regarding EOL communication (Dahlin & Wittenberg-Lyles, 2010). The COMFORT model and all EOL communication models for doctors should be tested for effectivess.One scale created by Engelberg, Downey, and Curtis (2006) examining the effectiveness and overall quality of EOL communication between patient and doctors might prove to be especially effective. Specifically, the Engleberg et al. scale focuses upon the importance of the quality of doctor communication and care of the patient, the frequency and type of end-of-life discussions, as well as the doctor’s awareness of patients’ treatment preferences from the patients’ perspectives. Overall, it is also important to test doctors’ general communication skills (verbal and nonverbal) as well as the types and nature of end-of-life topics that are shared between the doctors and patients.

Hospice Volunteers and Communication

A last piece of the puzzle regarding communication at the end of life (EOL) is the important job of hospice volunteers. Increasingly, people are experiencing EOL for a longer period of time and rather than lingering in hospitals under the constant care of healthcare professionals, they are choosing to return to their own homes under the care of family members. Family members often require help to care for their loved ones. Hospice volunteers fill in the gaps of care and communication with the dying. Hospice volunteers are trained first and foremost in communication (Foster, 2007). Volunteers must also have a strong aptitude for adaptability, compassion, empathy, mindfulness, and responsiveness, and the ability to truly be in the moment (Foster, 2005). Specific areas of training include: family dynamics, patient care skills, signs and symptoms of dying, boundaries, grief, and spiritual care (Foster, 2005). Negotiating the tension between “leading” and “following” patients and families in discussions of spirituality is an especially challenging skill at the EOL (Considine & Miller, 2010). Thus, compassionate communication activities of recognizing, relating, and (re)acting are critical in hospice (Way & Tracy, 2012).

Future Research and Training

There are five common communication problems experienced by hospice volunteers that have been identified and that suggest areas of future research and training (Planalp & Trost, 2008); these are also true for doctors, nurses, and other health professionals. First, healthcare professionals need to be better trained in how to communicate with individuals who don’t have the physical or mental capacity to communicate easily at the end of life (EOL). Focusing on the best ways to offer nonverbal comfort and connection may provide volunteers the best strategies on how to engage in shared activities and also increase their confidence in their ability to be helpful to the dying at EOL. Second, family members often are in denial regarding the impending death of their loved one; thus, teaching healthcare professionals how to better facilitate discussion around the death and dying process would be beneficial. Individuals also need to be made aware that dying individuals have a right to deny what is happening; thus, this awareness should help volunteers become more comfortable and respectful with this personal decision. Third, healthcare professionals are often confronted with a wide range of negative emotions (e.g., fear, guilt, sadness, anger, and resentment) that are experienced and expressed by the dying and their families. Training healthcare professionals on the best ways to manage negative feelings, both in the moment with the dying and families, as well as when they are dealing with their own personal emotions, could be helpful. Fourth, family dynamics are often complex and can result in displayed conflict among family members. Thus, training healthcare professionals on conflict management could help avoid problems that may emerge at the EOL. Fifth, future research should take into account international differences regarding patient-specific obstacles and facilitators to communication about end-of-life care (Janssen et al., 2011).

Conclusion

Communication at the end of life (EOL) between the terminally ill, family and friends, and palliative care professionals is necessary for a “good death” and ultimately helps to bring closure for all involved. Culture must be considered and incorporated into the conversations at the EOL. Communication at the EOL allows the dying to help their loved ones begin their bereavement journey through final conversations, as well as gives the dying a sense of control over their final months by having their wishes honored by healthcare and hospice professionals. The death journey is not easy; it is a challenging but important phase of the life cycle. Through authentic, open, and compassionate communiction, it can bring resiliency and growth. In the end, people want a “midwife” at death (e.g., a spouse, a nurse, a volunteer, etc.) and some sense of voice and control at the EOL—communication gives that voice and control.

Further Reading

Foster, E. (2007). Communicating at the EOL: Finding magic in the mundane. Mahwah, NJ: Lawrence Erlbaum.Find this resource:

Keeley, M. P., & Yingling, J. (2007). Final conversations: Helping the living and the dying talk to each other. Acton, MA: VanderWyk & Burnham.Find this resource:

Kubler-Ross, E. (1997). On death and dying. New York: Touchstone.Find this resource:

Ragan, S., Wittenberg-Lyles, E., Goldsmith, J., & Sanchez-Reilly, S. (2008). Communication as comfort: Multiple voices in palliative care. New York: Routledge.Find this resource:

Wittenberg-Lyles, E., Goldsmith, J., Ferrell, B., & Ragan, S. L. (2012). Communication in palliative nursing. New York: Oxford University Press.Find this resource:

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