Communication at the End of Life

Series Editor Preface

Communication at the End of Life

THOMAS J. SOCHA

Communication at the End of Life represents a milestone in the history of ideas about lifespan communication and is a significant and essential addition to the Lifespan Communication: Children, Families and Aging book series. Together, the editors and authors provide us with a communicative lens through which to view the many sides of experiencing our final days. They enlighten us about myriad choices, provide insights into improving the quality of end of life, and offer a positive framework for use by all those sharing an end-of-life journey. Although difficult and profound on so many levels, communication during end of life is really a continuation of all the communication that has come before and will come after—something that the famous Brandeis University sociologist Morrie Schwartz (2008) understood all too well, as he reminded us that if we can learn how to die, we can learn how to live.

Like this volume, the book series invites scholars to view communication through a panoramic lens—first words to final conversations—a comprehensive communication vista that brings children, adolescents, and adults of all ages into focus for the field of communication. It is my hope that such a view will become ← ix | x → commonplace in communication thinking and research where communication scholars take seriously the idea that all communication is developmental from its beginning to its end.

REFERENCE

Schwartz, M. (2008). Morrie: In his own words; Life wisdom from a remarkable man. New York, NY: Walker and Company. ← x | 1 →

Introduction: Communicating At, For, AND About THE End OF Life

MAUREEN P. KEELEY

HOWARD GILES

JON F. NUSSBAUM

Baby boomers, the largest segment of the U.S. population, are coming to the age at which they feel their own mortality and must cope with their parents’ deaths and, increasingly, with their peers’ deaths. Approximately 25% of our middle-aged generation (currently the largest group in our society) lives with their parents; 13 million are caregivers for ailing parents (“Baby Boomer News & Information,” 2005). In addition, these same boomers have more trouble discussing end-of-life issues (their own as well as that of their family members and friends) with their parents than do their parents who are now in their 70s or beyond (Greenwald & Associates, 2005). People at times may desire to learn more about what to expect; how to talk with professional health care workers about end-of-life choices, expectations, and fears; how to be a more effective partner on this journey with a loved one; and how to better prepare themselves for dealing with their own stress and grief as they care for and deal with the immediate loss of a loved one and the aftermath (see Chapter 11 of this volume; all further references to chapters are to those in this volume).

Unfortunately, we live in a culture that removes death from our view, apart from its ubiquity in the movies and in videogames (see Chapter 5). A century ago, witnessing death was commonplace because people died at home and in the family’s care. By 1992, 77% of deaths occurred in a health care facility and about 20% in a private home. Today, 80% of the 2.2 million Americans who die each year die in a hospital. While more people are entering hospice in the U.S., a mere 7% ← 1 | 2 → of Americans die in hospice care, and, on average, those few die within 36 days of entering hospice care (see Chapter 10). Removal of death from everyday life leaves no models for what people should do or say to help their loved ones have a good death (see Chapter 4) and also hinders people’s opportunities to use this terminal time to help them cope with their impending loss (see Chapter 12).

With medical advances in the treatment of cancer and other degenerative diseases, it is becoming likely that an ailing loved one will live longer after diagnosis than ever before (“Baby Boomers News & Information,” 2005). With this trend, more people in the future may choose to die at home and/or in hospice care. The moment that a loved one is given a death notice through notification of a terminal illness, the family and friends begin their journey with their dying loved one. This journey may take days or years, but however long it is, the family and friends begin looking for answers. How do I ensure that my loved one has the best care possible at the end of life (see Chapters 2, 3, 4, 6, 7, 8, 9, and 10)? When is the right time to go into hospice or into palliative care (see Chapters 2, 10, and 12)? How do I talk with health care professionals about the dying process (see Chapters 2, 6, 7, 8, 10, and 12)? How do I deal with my anger, fears, and loss (see Chapter 11)? How can I help my mother, father, spouse, child, or sibling (see Chapter 8)? How do I say goodbye (see Chapter 7)?

Our effort in this volume—and this Introduction—is to offer one crucial recommendation: communication. Scholars in a wide variety of fields, such as palliative medicine (Kübler-Ross, 1969, 1997; McQuellon & Cowan, 2000), psychology (Aiken, 2001), and sociology (Moller, 1996), have examined death and dying for decades and have often suggested that communication was necessary for a good death; however, what was meant by communication was often vague. Within the past decade, communication researchers have been exploring communication among family members at the end of life (Keeley, 2007; Keeley, Generous, & Baldwin, 2014; Keeley & Yingling, 2007); communication within palliative health care teams as well as with patients (Goldsmith, Ferrell, Wittenberg-Lyles, & Ragan, 2013; Ragan, Wittenberg-Lyles, Goldsmith, & Sanchez-Reilly, 2008); and between hospice volunteers and dying individuals (Foster, 2007).

In this Introduction, we bring together recurrent themes as they unfold throughout this volume. The work represented herein is interdisciplinary, methodologically eclectic, and theoretically diverse, and, as a consequence, we contend is refreshingly varied in its recourse to data and personal narratives. Although communication research relating to end-of-life issues is, arguably, in its infancy, there is sufficient compelling extant work for us to invite chapters that span many important, albeit not all, facets of this important juncture in the lifespan.

Specifically, end-of-life communication focuses on the verbal and nonverbal communication that occurs between individuals following the diagnosis of a terminal illness (Keeley & Yingling, 2007). The approaching death creates the ← 2 | 3 → circumstances that affect the communication climate for the participants. For instance, the interactions will often be different depending on the stage of the dying process, whether it is in the early stages of the end-of-life journey immediately following a terminal diagnosis, or toward the end of the journey following a long fight with the illness, or coming to the decision to terminate life support, or with young children’s traumatically premature demise (see Chapter 9). Many of the conversations are private, one-on-one interactions such as those that occur between the individual who is dying and his or her family and friends, often occurring within the context of home (see Chapter 8). Other conversations are conducted within small groups, such as when family members gather around their dying loved one or in the midst of palliative care teams that are focusing on the medical needs of their patient within hospitals or in-care hospice facilities.

Topics of conversations at the end of life include messages of love, identity, spirituality, everyday talk, difficult relationship talk (Keeley, 2007), instrumental talk about the illness or dying (Keeley et al., 2014), palliative care treatment (Wittenberg-Lyles, Goldsmith, & Ragan, 2010), funeral plans (Aiken, 2001), and talk about life after the death of the loved one (Keeley & Yingling, 2007; see Chapter 7). In addition, communication at the end of life is, as this volume attests, complicated because there are many communication processes that must be dealt with, including uncertainty management (Scott & Caughlin, 2014); decision making and negotiation regarding the types of and length of care (Goldsmith et al., 2013); privacy management (Petronio, 2002); communicating comfort and social support (Ragan et al., 2008); and sense-making of the death journey, the loss, and of the meaning of life, death, and the afterlife (Keeley, 2009; Keeley & Koenig Kellas, 2005; see Chapters 2 and 4).

On the one hand, some family members manage their uncertainty at the end of life by sidestepping particular conversations that are too frightening or depressing to them (Caughlin, Mikucki-Enyart, Middleton, Stone, & Brown, 2011). On the other hand, some individuals choose to face this very directly by gathering as much information as possible to reduce uncertainty as much as possible and by participating in authentic conversations (McQuellon & Cowan, 2000). While the two above-mentioned ways of dealing with uncertainty (management and reduction) are oppositional, many people at the end of life, depending on the individuals in the interaction, generally engage in open communication while simultaneously avoiding certain topics, thus protecting others and maintaining optimism (Keeley, in press).

Decision making and negotiation regarding the types of care and the length of treatment at the end of life are important communication processes because, oftentimes, making decisions about end-of-life care is one of the few things over which the dying person and the family members have any control in the midst of a terminal illness. Specifically, palliative health care specialists want to be proactive ← 3 | 4 → in getting patients to create an advance care plan at the end of life (Cohen & Nirenberg, 2011; see Chapters 2, 6, 7, 10, and 11). It is necessary, however, for the patient and family members to be willing to listen to and accept the terminal illness diagnosis if they are going to navigate the end-of-life journey on their own terms.

Managing privacy (physical, emotional, informational, and communicative) is challenging at best at the end of life because of the escalating needs of both the patient and the family caregivers during that period. Strangers are brought into the house (e.g., volunteers, hospice workers), thereby invading the family space. At some point (if not at many points) in time, the terminally ill patient needs help with taking care of personal needs and avoiding feeling vulnerable and exposed. In addition, medical information must be shared to ensure proper care, and roles often are drastically changed during the end-of-life process (Lynn & Harrold, 1999; see Chapters 2, 4, 6, 7, 8, 9, and 12). Managing communication privacy focuses on ownership and co-ownership of information, as well as the negotiation of rules concerning how, where, and when the information will be shared (Petronio, 2002). Palliative health care specialists are especially concerned with protecting the privacy needs of their patients and their family members at the end of life.

Comforting messages are critical messages at the end of life because they often deal with the physical and emotional suffering that comes with the loss that accompanies death (Keeley, 2009). Individuals are often more aware and careful regarding what they say and how they say it at the end of life than they are in other conversations (Keeley, 2007; see Chapters 2 and 7). Scholarship on politeness strategies and facework messages (e.g., Holtgraves, 2002) suggests that careful attention to what is said and how things are said (especially as it applies to protecting one’s own and another’s image and identity) helps to cultivate a more open and supportive conversational environment (Burleson & Goldsmith, 1998), creates a greater sense of social support (Sarason, Sarason, & Gurung, 1997), and builds greater acceptance, coping, and trust within relationships (Greenberg, Rice, & Elliott, 1993), all of which benefit individuals and family members in the face of impending death.

Making sense of the death journey, the meaning of life, death, and the afterlife is often an important goal for everyone at the end of life (Kübler-Ross, 1997; Levine, 1984; see Chapter 12). When people are confronted with a terminal illness, they frequently search for meaning by exploring their religious and spiritual belief systems (see Chapter 4). When medical science can no longer offer hope or explanation, spiritual/religious beliefs provide the only consoling explanation available to which people may turn as they face impending death (Keeley, 2009). In addition, sense-making is also achieved through storytelling (Foster, 2002; Keeley & Koenig Kellas, 2005) and with communication with trusted individuals (e.g., a loved one, chaplain, hospice social worker, nurse, hospice volunteer; Keeley & Yingling, 2007; Ragan et al., 2008; see Chapters 2, 5, 7, 8, and 10). ← 4 | 5 →

As subsequent chapters inform, to deal successfully with communication at the end of life, people must also have a strong aptitude for empathy, authenticity, compassion, responsiveness, adaptability, mindfulness, and the ability to be truly in the moment (McQuellon & Cowan, 2000). Empathy includes an individual’s ability to focus on the emotions of another person, to recognize, appreciate, and comprehend those emotions, and to respond successfully to those emotions (Suchman, Markakis, Beckman, & Frankel, 1997). Authentic communication centers on honest, candid, and heartfelt self-expression and highlights what is important to individuals, revealing what is their real truth (Rosenberg, 2003). Compassionate and responsive communication focuses on kindness, consideration, and immediacy of responses (Keeley & Baldwin, 2012). Adaptability necessitates that individuals be flexible and open to whatever is going on in the moment and to be willing to accommodate communicatively to fit current needs (Keeley & Yingling, 2007; see also Giles & Soliz, 2014). Mindfulness requires attending to both the cues of individuals and to one’s own internal cues in order to respond with authenticity, even if it means “abandoning the script” (Wittenberg-Lyles, Goldsmith, & Ragan, 2010, p. 297). By engaging in these other-centered communication behaviors, there is less time and energy wasted on judging, analyzing, complaining, and comparing situations, resulting in more positive outcomes (Rosenberg, 2003). Nonverbal communication is critical to successfully achieving these other-centered communication behaviors because it is often the most revealing (Keeley & Yingling, 2007).

Age is a significant consideration regarding communication at the end of life, both the age of the person who is dying and the age of the family members dealing with the death of the loved one. Acceptance of death, bereavement, and communication may be experienced very differently depending on the age of the person who is dying (Keeley & Yingling, 2007). Death of a child or younger person is often met with anger and denial because of the loss of all that could have been if that young person had lived (see Chapter 9), whereas the death of an individual who had a long and happy life is more readily accepted as a natural part of the life cycle. Children and/or adolescents deal with the death of a family member in different ways depending on their age, cognitive development, and life experiences (Aiken, 2001). Specifically, children under the age of 3 do not understand the finality of death, and, therefore, have difficulty accepting its conclusiveness; children 3 to 6 years of age often understand the concept of death but also believe in magical thinking, and may believe that death can be caused by feelings or thoughts, or may be very curious about the biological aspect of death (Myers, 1986). Children from 7 to 12 years of age have a more accurate view of death in that they understand that death is inevitable, irreversible, and can happen to anybody and at any time; nonetheless, they struggle to talk about death and dying (Aiken, 2001; Myers, 1986). Adolescents (12- to 18-year-olds) clearly know that death is final; they ← 5 | 6 → frequently need support but often want to appear independent (Myers, 1986). Furthermore, all children and adolescents are coping with their grief while concurrently carrying out their day-to-day tasks and going through developmental milestones (Oltjenbruns, 2001).

Culture is also an important factor when dealing with communication at the end of life (see Chapter 6). Avoiding talking about or dealing with death is a common part of U.S. culture, at least in part because death as it is generally represented in the U.S. is a taboo topic and is often shrouded in fear, doubt, loss of control, and feelings of awkwardness and discomfort (Giles, Thai, & Preston, 2014). Those from Asian countries are more accepting of death, yet they still believe that it is bad luck to speak about it (Wu, Tang, & Kwok, 2002). Traditional Hispanic culture deals with death according to its own values and religious beliefs, preferring to keep the care of the dying and end-of-life communication within the family, while funerals focus on celebrating the life and new afterlife of the deceased (Moller, 1996). Thus, culture clearly has a strong impact on what people communicate, how they communicate, and when they communicate at the end of life.

CONCLUSIONS

Consequently, the research represented in this volume that communication scholars are conducting offers clear advice and practices for people who are facing the dying process (their own, that of a loved one, or within their palliative health care careers). Communication scholars also contribute explicit communication information and guidance, providing individuals the opportunity to approach the end of life with models to follow. Increasing the information and the communication about death and dying will remove much of the mystery and fear that is often associated with the end-of-life journey. In addition, taking a communication approach allows individuals to look at the pragmatics of the dying process and to offer reassurance to those who want to converse with the dying—but do not know how. It has been our goal that the information gathered in this book helps people to be more successful in their communication at the end of life and that it will stimulate an exciting generation of new theoretical and empirical gains in the very near future (see Epilogue).

One poignant area not touched on in this book is the consequences of a pet dying in cultures (see Gray & Young, 2011) that hold them dear. Although the evidence concerning positive health benefits of having pets is mixed (Amiot & Bastian, 2014), certainly many families—as evident from their holiday card photographs—consider them integral family members. Their loss, therefore, can be psychologically traumatic and the communicative management, and the discourse, ← 6 | 7 → of pet bereavement is worthy of serious study as are the emotional repercussions of different kinds of pets’ deaths on their owners, both male and female (see Herzog, 2007). The latter can be particularly distressing for persons living alone as well as for younger children and older adults, and there are data to suggest that some people feel the loss of a pet as deeply as they would a close fellow human (Knight & Edwards, 2008). The extent to which empathy and sympathy are genuinely expressed over what period of time—by other pet owners and those more averse to pets—to those enduring the loss is a significant research topic. Certainly there is very little institutional or media support to assist in this grieving process, although a few resource books do exist (e.g., O’Connor, 1994).

These dynamics also raise the intriguing issue as to how pets and animals, in turn, deal with other members of their species dying. There is an intriguing literature, albeit observational and mostly case studies, on how male and female animals deal differentially with the death of their infants, especially with respect to chimpanzees and gorillas (e.g., Anderson, 2011; Cronin, Van Leeuwen, Mulenga, & Bodamer, 2011). Interestingly, Braitman (2014) discusses research on mammals that suggests that they grieve much like humans when a close relationship is ended by death. Indeed, the region of the brain that is activated is similar to the region that activates grief in humans, the prolongation of which can lead to clinical depression.

As mentioned above, this book places communication at the core of our end-of-life experience. It is our hope that this book captures the profound significance of communication as those who are close to death and their networks of family, friends, and both formal and informal caregivers manage the final moments of life.

REFERENCES

Aiken, L. R. (2001). Dying, death, and bereavement (4th ed.). Mahwah, NJ: Lawrence Erlbaum.

Amiot, C. E., & Bastian, B. (2014, November 3). Toward a psychology of human–animal relations. Psychological Bulletin. Advance online publication. Retrieved from http://dx.doi.org/10.1037/a0038147

Anderson, J. R. (2011). A primatological perspective on death. American Journal of Primatology, 73, 410–414.