Communication Death, Dying, and Communication
by
Teresa Thompson, Louis P. Cusella
  • LAST REVIEWED: 05 May 2017
  • LAST MODIFIED: 29 May 2014
  • DOI: 10.1093/obo/9780199756841-0148

Introduction

Besides birth, there is nothing more inherent to life than death and the process of dying—despite the off-quoted aphorism including taxes in that list. Although that notion of inherency seems obvious, there is much evidence to indicate that many human beings go to considerable effort to avoid the reality of the naturalness of death. On one level, that is understandable, as we are indeed born with a struggle to survive for as long as we can. But a more reasoned level should remind us that recognition of the inherency of death requires a different approach and an ability to confront reality and be able to talk about it. The research on dying and death issues from a communication perspective focuses on the struggle to move to that level of acceptance and to dialogue about it. That is the focus of this bibliography. It should be noted that much of the medical literature that addresses the topic culminates in the same exhortation: We need more communication at end of life. This simplistic conceptualization that “more” is “better” does little to expand our understanding of the process of communication during the terminal stages of life. An attempt has been made to include as little of the “more is better” writing as possible. Death, like health and illness, is socially constructed. What we come to see as “natural” is instead a construction based on language and culture, which becomes relevant not only to historically changing views of death but also to cultural differences. Historically, a good life was associated with a good death. That conceptualization is still true in some cultures, but that association has disappeared in many modern views. Instead, death avoidance has become predominant, and there is frequently a general desire for death to be seen as being separate from life, rather than a natural part of life. After covering some core texts, journals, theoretical perspectives, and methodological approaches, this bibliography moves to a focus on palliative team care and related processes. This emphasis reflects the dominance of palliative team care (simultaneous with curative care, in most cases) in the dying process. Some processes related to palliative team care follow, including hospice, children, families, spirituality/religion, cultural issues, death fear/avoidance, the tension between maintaining hope and allowing openness, advance directives, bad news/prognosis, and issues focused particularly on care providers. This bibliography culminates with a discussion of ethical concerns, although ethics are inherent in all work on this topic.

Core Texts

Unlike some of the topics covered in this bibliography series, there are relatively few texts on dying and death that are written from a communication perspective. The exceptions to that generalization are found in the works of Maureen Keeling and Julie Yingling on Final Conversations; the contributions of scholars Elaine Wittenberg-Lyles, Joy Goldsmith, and Sandra Ragan, whose focus is on communication and palliative care teams (see Ragan, et al. 2008, cited under Narrative Paradigm, as well as their more recent books with Betty Ferrell in Wittenberg-Lyles, et al. 2012 and Sandra Sanchez-Reilly in Wittenberg-Lyles, et al. 2010 in this section); and Beach 2009, a discourse analytic series of studies that provide detailed examination of a family discussing the mother’s cancer. Several ethnographic studies of dying are also of interest, including Sudnow 1967 (Passing On: The Social Organization of Dying) and The 2002 (Palliative Care and Communication: Experiences in the Clinic, cited under Methods). There are numerous books on more psychological approaches to dying, primarily beginning with Kubler-Ross 1969. Albom 1997, whose author wrote the popular Tuesdays with Morrie, also had a strong impact on how dying and death are viewed in many areas of Western culture; the book focuses on celebrating life while accepting and approaching death.

  • Albom, Mitch. 1997. Tuesdays with Morrie: An old man, a young man, and life’s greatest lesson. New York: Broadway.

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    Written by an acclaimed sports journalist and based on weekly conversations with a terminally ill former professor and mentor, the book not only focuses on important lessons in life but does so while helping the reader understand dying and death. A poignant, long-time best-seller.

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  • Beach, Wayne. 2009. A natural history of cancer. Cresskill, NJ: Hampton.

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    An unusually detailed examination of sixty-one phone conversations among the family of a mother/wife/sister who is diagnosed and deals with cancer. Traces the interactions of the family from diagnosis to death to determine interactional patterns relating to emerging news and troubles, being stoic, claiming and defending knowledge, and commiserating.

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  • Kubler-Ross, Elisabeth. 1969. On death and dying. New York: Scribner.

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    Generally regarded as the book that opened the eyes of many in Western culture to the processes of dying and grieving. Offers stages of grieving, which are applied to both anticipated death and the aftermath of death. Focuses on humane care for the dying and the importance of unconditional love.

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  • Lawton, Julia. 2000. The dying process: Patients’ experiences of palliative care. New York: Routledge.

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    Focuses on how patients experience the decline prior to death. Argues that the concept of “a good death” is open to interpretation. Emphasizes the effects of bodily deterioration on a patient’s sense of self. More ethically contentious and controversial than most other work in this area.

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  • Monroe, Barbara, and David Oliviere. 2004. Patient participation in palliative care: A voice for the voiceless. New York: Oxford Univ. Press.

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    Focuses on an alliance between the “person” and the “patient” and active partnerships between patients and care providers. Authors from medicine, nursing, psychology, social work, and the ministry contribute to an understanding of bereavement issues and cultural differences. Patient contributions regarding palliative team care are also included.

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  • Sudnow, David. 1967. Passing on: The social organization of dying. New York: Prentice Hall.

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    Unusually detailed ethnography of those who are dying. Insightful anecdotes about families facing impending death, how one employee wears a particular uniform indicating that he is getting ready to handle a dead body and is thus socially ignored, and announcements of impending death when it has actually already occurred.

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  • Wittenberg-Lyles, Elaine, Joy Goldsmith, Betty Ferrell, and Sandra Ragan. 2012. Communication in palliative nursing. Oxford: Oxford Univ. Press.

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    Brings together a communication and a nursing perspective to outline the COMFORT curriculum for teaching palliative team care to nurses. Focuses on practicing self-care, and emphasis is placed on mindful presence, orientation, looking for opportunities and openings, relating, team communication, and dealing with family.

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  • Wittenberg-Lyles, Elaine, Joy Goldsmith, Sandra Ragan, and Sandra Sanchez-Reilly. 2010. Dying with comfort: Family illness narratives and early palliative care. Cresskill, NJ: Hampton.

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    Presents the stories of several families facing terminal illness with and without palliative team care. The narratives focus on the deficits in current communication practices as patients approach terminality, evidencing the increased suffering of both patients and families when palliative team care is delayed. Integrates literature with narratives and communication with medical research.

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Journals

Palliative care journals and those focusing specifically on death issues (Omega and Death Studies) are the most common outlets for research in this area. Most of these journals focus on empirical research, but some include practical advice and letters to the editor. Omega and Death Studies focus on death issues of all types and have a social scientific emphasis. They include issues such as suicide, which would not be relevant to palliative care. The various palliative care journals take a medical/clinical perspective. Journal of Palliative Medicine provides a particularly strong emphasis on standard medical issues but also focuses on legal concerns. Journal of Pain and Symptom Management is more interdisciplinary, as is American Journal of Hospice & Palliative Medicine. Palliative Medicine takes a very clinical approach, and Palliative & Supportive Care places more emphasis on psychiatric and spiritual issues than do the other journals. International Journal of Palliative Nursing emphasizes nursing issues and concerns. The duties and responsibilities of nurses are frequently different from those of other health-care providers, and nurses tend to place more emphasis on communication concerns than do many other health-care professionals.

Theoretical Perspectives

Apart from the work that takes a grounded theory approach, much scholarship on dying is problem-based rather than theoretically framed. Work that is theoretically framed is generally seen as of more value than that which is problem-based or atheoretical, in that work that tests or is framed by theory can be applied more broadly than that which focuses just on a particular problem or context. The few exceptions from the grounded theory approaches are based on Dialectical Theory, a Transtheoretical/Stages of Change Model and Other Stage Theories, Grounded Theory, Problematic Integration Theory, Symbolic Interactionism, a Narrative Paradigm, or Family Communication Patterns Theory. Related to the notion of uncertainty inherent in problematic integration theory is also a perspective known as uncertainty management theory, but it has been less directly applied to dying. Building on the work of symbolic interactionist Erving Goffman, performance and dramaturgical theories also hold promise, especially for the palliative team care setting. Sandra Pertronio’s communication privacy management theory also has great applicability to death-related issues.

Dialectical Theory

Grounded in the work of Mikhail Bakhtin, dialectical perspectives are widely used in the study of interpersonal communication. They have more recently been applied in the health-care context as it focuses on death and dying. Dialectical perspectives such as that provided by Golden 2010–2011 look at inherent contradictions in processes that are also inherently intertwined.

  • Golden, Mindi A. 2010–2011. Dialectical contradictions experienced when a loved one is dying in a hospital setting. Omega 62:31–49.

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    This case study of the death of the author’s grandmother identifies three key dialectical tensions based on an examination of journal entries: certainty–uncertainty, control–lack of control, and autonomy–connection. Suggestions are offered regarding how an understanding of these dialectics may facilitate the provision of social support.

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Transtheoretical/Stages of Change Model and Other Stage Theories

The earliest work of the contemporary (as opposed to classical) era to bring popular attention to death and dying issues was Elisabeth Kubler-Ross writing on the stages of facing dying and grieving individuals (see Kubler-Ross 1969, cited under Core Texts). Although there has been controversy over these stages and the linearity of the list, stage theories remain relevant in the dying literature. More particularly, some research has applied the transtheoretical/stages of change approach to the approach to terminality. The transtheoretical model was originally developed to apply to such health problems as smoking cessation, arguing that there are several stages through which individuals proceed as they first begin to think about stopping smoking, move forward in the process, maintain the process, and so on. The model also argues that different persuasive theories are relevant during different stages of the process. Applying this approach to dying and death involves considering the stage at which the patient is approaching acceptance of terminality and is seen rather clearly in Rizzo, et al. 2010.

  • Rizzo, Victoria M., Joseph Engelhardt, Daniel Tobin, et al. 2010. Use of the stages of change transtheoretical model in end-of-life planning conversations. Journal of Palliative Medicine 13:267–271.

    DOI: 10.1089/jpm.2009.0281Save Citation »Export Citation »E-mail Citation »

    Noting that both providers and patients feel uncomfortable with end-of-life discussions, Rizzo, et al. offer a structured guide for these discussions that they call an Advanced Illness Coordinated Care Program. They provide a controlled trial to test this model, drawing conclusions about when it will and will not be useful.

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Grounded Theory

As the work on dying and death is nicely amenable to qualitative approaches in terms of methodologies, it is not surprising that a grounded theory foundation is a common theoretical basis of research in this area. This is because grounded theory is not a theory per se, it is rather an approach to theory building. In grounded-theory work, the theory emerges out of the data. The process is deductive rather than inductive. Numerous examples of work generating grounded theory can be found in the literature. One example is evident in the study of balancing hope versus openness at end of life in Thulesius, et al. 2003. In this study, interviews yield data that allow the generation of a theory of how this balance is maintained through three stages.

  • Thulesius, Hans, Anders Håkansson, and Kerstin Petersson. 2003. Balancing: A basic process in end-of-life cancer care. Qualitative Health Research 13:1353–1377.

    DOI: 10.1177/1049732303258369Save Citation »Export Citation »E-mail Citation »

    Based on interviews with cancer patients and end-of-life care providers, three strategies were identified: Weighing emphasizes understanding patients’ wishes and needs compared to available resources; shifting involves breaking bad news and identifying treatments; and compensating is stretching time and maintaining hope, even if that hope may be false or deceitful.

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Problematic Integration Theory

Problematic integration theory, developed by Austin Babrow, has been applied to a variety of contexts but has been used most frequently in the study of health communication issues. The theory focuses on how uncertainties are integrated as a person struggles with a problem that he or she is facing, in this case the issue of impending terminality. Hines, et al. 2001 applies the theory to end-of-life communication between the elderly and care providers.

  • Hines, Stephen C., Austin Babrow, Laurie Badzek, and Alvin Moss. 2001. From coping with life to coping with death: Problematic integration for the seriously ill elderly. Health Communication 13:327–342.

    DOI: 10.1207/S15327027HC1303_6Save Citation »Export Citation »E-mail Citation »

    Whereas nurses think that patients should seek information regarding whether debilitating dialysis should be continued, patients themselves seek information that will help them cope with the effects of the dialysis. Explaining how this leads to flawed decision making, the authors provide recommendations for easing the transition to death.

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Symbolic Interactionism

Symbolic interactionism is a sociological perspective that, because it focuses on how the communicative (symbolic) process operates to guide interaction, is widely used in the field of communication. Many commonly used concepts and terms that have crept into contemporary vernacular, such as “significant other” and “self-fulfilling prophecy” came from symbolic interactionism. The perspective was conceptualized prior to the development of the modern field of communication and is implicitly or explicitly the basis for much work in the area. An explicit application of the perspective is found in Golubow 2002, written while the author was still a doctoral student. It builds on the work of such symbolic interactionists as Ernest Becker.

  • Golubow, Mark. 2002. For the living: Coping, caring, and communicating with the terminally ill. Amityville, NY: Baywood.

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    Provides advice for health-care professionals based on the narratives of oncology professionals. Then offers a symbolic interactionist perspective, emphasizing acts of the self (reflection, identity formation), acts of coping with the social construction of death, and acts of communication (disclosure, metaphors, and euphemisms).

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Narrative Paradigm

A narrative approach, which looks at humans as storytellers, is now pervasive across many areas of the social sciences, medicine, and the humanities (an area to which it is not new). Rita Charon has championed the approach in medicine. Within the field of communication, the perspective builds most directly on the early work of Walter Fisher. Fisher contrasted the rational world paradigm with the narrative paradigm, identifying the different assumptions of each and relating the notions of narrative coherence and fidelity to stories. The approach has been applied in numerous areas of health communication, but its contribution can be seen most clearly in the work on palliative team care by Sandra Ragan and her former doctoral students Elaine Wittenberg-Lyles and Joy Goldsmith (Ragan, et al. 2008).

  • Ragan, Sandra L., Elaine Wittenberg-Lyles, Joy Goldsmith, and Sandra Sanchez-Reilly. 2008. Communication as comfort: Multiple voices in palliative care. New York: Routledge.

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    After providing a history of and rationale for palliative team care, relevant voices are presented. These are based on the stories of the patient, the medical perspective (differentiated from the team of care providers themselves), the family caregivers, and the interdisciplinary health-care team. Culminates with stories from the four authors.

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Family Communication Patterns Theory

As the family is the key unit for most individuals as they approach end of life, researchers have applied various family communication theories to this context. Family communication patterns theory, as utilized in Wittenberg-Lyles, et al. 2012, has provided useful contributions.

  • Wittenberg-Lyles, Elaine, Joy Goldsmith, George Demiris, Debra Parker Oliver, and Jacob Stone. 2012. The impact of family communication patterns on hospice family caregivers: A new typology. Journal of Hospital Palliative Care Nursing 14:25–33.

    DOI: 10.1097/NJH.0b013e318233114bSave Citation »Export Citation »E-mail Citation »

    According to family communication patterns theory, family members share a unique relational history that establishes implicit and explicit rules for communicating with each other. These patterns impact the mortality talk about spiritual and psychosocial issues that is encouraged in hospice; this may not have been addressed in previous communication.

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Methods

The methods used in the research on dying and death are primarily qualitative, as one would expect considering the nature of the phenomenon. The small amount of experimental research that has been done in the area has involved testing the effectiveness of training programs to impact interaction between health-care providers and dying patients as well as their families. It would not be ethical, of course, to experimentally manipulate treatment of the dying or their families, so no such research has been reported in the literature. Interviews and focus groups are the most common methods used. A few quantitative studies are also reported; in particular, scale development has become much more common and sophisticated in this area of study. Due to the detailed nature of the data examination provided by discourse analysis, work in this area has made especially insightful contributions to our understanding of health communication processes. This is particularly true in regard to provider–patient interaction. Ethnography has also been especially interesting, and goes back to early work by symbolic interactionists.

Qualitative

Qualitative methods do not emphasize numbers. They focus on observation of behavior and asking people about their lived experiences.

Ethnography

There are a number of fascinating ethnographies of communication at end of life, but The 2002 exemplifies the insightful work being done in this area. See also the classic Passing On (Sudnow 1967, cited under Core Texts). Ethnographic analysis is based on observation of behavior in naturally occurring contexts and usually takes place over an extensive period of time. Interviews frequently accompany the ethnographic observation.

  • The, Anne-Mei. 2002. Palliative care and communication: Experiences in the clinic. Philadelphia: Open Univ. Press.

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    A detailed, longitudinal observation of a number of patients and their families as they move from curative therapy to palliative team care. The author built relationships with the families that allowed understanding of the transitions of hope, the reactions to the experiences of other patients, and the ultimate move to end of life.

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Interviews

As interviews are a fundamentally important method for obtaining participant perspectives, they are relied on a great deal in dying and death research. Yedidia and MacGregor 2001 utilizes interviews to determine how patients look at their final months of life.

  • Yedidia, Michael J., and Betsy MacGregor. 2001. Confronting the prospect of dying: Reports of terminally ill patients. Journal of Pain and Symptom Management 22:807–819.

    DOI: 10.1016/S0885-3924(01)00325-6Save Citation »Export Citation »E-mail Citation »

    To identify dominant themes characterizing patients’ perspectives on death during their last months of life, an ethnographic technique of interviewing and an inductive qualitative approach to analysis were employed. Serial, in-depth, semistructured interviews were conducted with thirty patients to understand how they confronted the thought of dying.

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Discourse Analysis

Discourse analysis provides a microscopic analysis that thoroughly analyzes interaction patterns. Aldridge and Barton 2007 utilizes this approach to determine how communication is used to impact treatment goals, moving from a therapeutic emphasis to comfort care.

  • Aldridge, Matthew, and Ellen Barton. 2007. Establishing terminal status in end-of-life discussions. Qualitative Health Research 17:908–918.

    DOI: 10.1177/1049732307299995Save Citation »Export Citation »E-mail Citation »

    The communicative purpose of an end-of-life discussion is to change the goals of treatment for a terminal patient from therapeutic to comfort care. In this study, the authors present a comparative discourse analysis of end-of-life discussions that reached a consensus to change the goals of treatment and discussions that did not. They found that the presentation of medical information was subtly different across these discussions.

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Focus Groups

Like interviews, focus groups are a useful tool for understanding participants’ perspectives and lived experiences. Royak-Schaler, et al. 2006 utilizes this method with family members of those who had died to ascertain the aspects of end-of-life care that were and were not helpful.

  • Royak-Schaler, Renee, Shahinaz M. Gadalla, Jeanne P. Lembauk, Douglass D. Ross, Carla Alexander, and Deborah Scott. 2006. Family perspectives on communication with healthcare providers during end-of-life cancer care. Oncology Nursing Forum 33:753–760.

    DOI: 10.1188/06.ONF.753-760Save Citation »Export Citation »E-mail Citation »

    Family members participated in focus groups about the type of end-of-life care their deceased relatives had received. Looks at how satisfaction with end-of-life care was associated with the perceived quality of communication among patients, family members, and the health-care team. Use of hospice services was compromised by communication issues.

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Narrative Analysis

Narrative analysis has become more and more prominent in the scholarship of many aspects of medicine, the humanities, and the social sciences in the past two decades. Scholars and practitioners have come to recognize that listening to the patient’s story is an important part of the practice of medicine. Myers 2002 examines the impact of reliance on a type of illness narrative referred to as the restitution narrative, with an emphasis on cure, on delay of hospice care and increased suffering for the patient.

  • Myers, Gary D. 2002. Can illness narratives contribute to the delay of hospice admission? American Journal of Hospice & Palliative Care 19:325–330.

    DOI: 10.1177/104990910201900509Save Citation »Export Citation »E-mail Citation »

    This study considers how a prominent type of illness narrative, the restitution narrative, delays decisions for hospice by inhibiting the transformation of hope from a hope for cure to a hope for quality at life’s end. This delay diminishes quality of life and increases suffering. Alternative narratives are encouraged.

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Metaphor Analysis

Like narrative analysis, the value of metaphor analysis has now become recognized in many fields of study. Metaphors are more subtle ways to understand meaning and lived experiences. Southall 2012 identifies five key metaphors used by patients in palliative team care settings. Understanding these metaphors is useful for more productive clinical interaction.

  • Southall, David. 2012. The patient’s use of metaphor within a palliative care setting: Theory, function and efficacy. A narrative literature review. Palliative Medicine 27:304–313.

    DOI: 10.1177/0269216312451948Save Citation »Export Citation »E-mail Citation »

    Delineates the metaphors used by patients and categorizes them into broad groupings: metaphors of war, journeying, personhood, the natural world, and existential concepts. Metaphoric communication allows sensitive subjects to be dealt with. Engaging with patients at the metaphoric level opens up the possibilities of new framing and coping strategies.

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Mixed

Although arguments for triangulation in research have been around since at least the 1960s, researchers have typically relied on either quantitative or qualitative methods. More recently, some researchers have come to recognize the value of approaching research concerns by relying on a combination of both qualitative and quantitative methods.

Mixed Methods

Cherlin, et al. 2005 combines a quantitative survey and in-depth interviews to provide both breadth and depth to research on end-of-life discussions.

  • Cherlin, Emily, Terri Fried, Holly G. Prigerson, Dena Schulman-Green, Rosemary Johnson-Hurzeler, and Elizabeth H. Bradley. 2005. Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine 8:1176–1185.

    DOI: 10.1089/jpm.2005.8.1176Save Citation »Export Citation »E-mail Citation »

    Mixed-methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers. Many family caregivers reported that a physician never told them the patient’s illness could not be cured, never provided life expectancy information, and never discussed using hospice.

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Systematic Reviews

Although not quantitative meta-analyses, systematic reviews go beyond traditional reviews of the literature to summarize a body of research in a more complete and, as the title implies, systematic way. They are categorized here under “mixed methods” because they do involve some counting and computation, but only to a limited degree. This categorization is an arguable one, however. Systematic reviews have become very common in the medical and nursing literature. Levin, et al. 2010 focuses on end-of-life care in the intensive care unit (ICU).

  • Levin, Tomer T., Beatriz Moreno, William Sylvester, and David Kissane. 2010. End of life communication in the intensive care unit. General Hospital Psychiatry 32:433–442.

    DOI: 10.1016/j.genhosppsych.2010.04.007Save Citation »Export Citation »E-mail Citation »

    Six key databases were searched for research relating to end-of-life communication in the ICU. Research examined key transitions from purely curative care to the inclusion of palliative team care. Family meetings received much emphasis. An important notion was viewing withdrawal of life-extending treatment as predictable rather than unexpected.

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Quantitative

Included in this section are sources on content analysis, scales, experimental methods, and the Delphi method.

Content Analysis

Content analysis is used most commonly to look at mediated communication, but Curtis, et al. 2001 provides a unique application of the method by utilizing it to look at focus group data. The work helps identify relevant skill sets for end-of-life interaction.

  • Curtis, J. Randall, Marjorie D. Wenrich, Jan D. Carline, Sara E. Shannon, Donna M. Ambrozy, and Paul D. Ramsey. 2001. Understanding physicians’ skills at providing end-of-life care: Perspectives of patients, families, and health care workers. Journal of General Internal Medicine 16:41–49.

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    Content analysis of focus-group data identified twelve domains of physicians’ skills at providing end-of-life care. Notable among these were emotional support, personalization, attention to patient values, respect, humility, and support of patient decision-making. Fifty-five more specific skills were also identified and held constant across illness and patient type.

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Scales

Quantitative scales to assess various concepts and processes relevant to dying and death concerns are becoming more and more important in research in the area. One example can be seen in the scale in Nekolaichuk and Bruera 2004 for assessing hope at end of life.

  • Nekolaichuk, Cheryl L., and Eduardo Bruera. 2004. Assessing hope at the end of life: Validation of an experience of hope scale in advanced cancer patients. Palliative & Supportive Care 2:243–253.

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    To gather validity evidence for an innovative experience of hope scale, the Hope Differential-Short (HDS) was developed. Participants completed a survey consisting of the following measures: the HDS, the Herth Hope Index, the Hope Visual Analog Scale, and the Edmonton Symptom Assessment System. Support was provided for validity of the HDS.

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Experimental

Although there are ethical issues that prevent the application of experimental methods to many topics related to dying, intervention studies commonly use an experimental method. Slort, et al. 2013 utilizes such an approach to determine the impact of an intervention/training program on provider–patient interaction.

  • Slort, Willemjan, Annette H. Blankenstein, Bart P. M. Schweitzer, et al. 2013. Effectiveness of the ACA (Availability, Current Issues and Anticipation) training programme on GP–patient communication in palliative care: A controlled trial. Biomed Central: Family Practice 14:93–103.

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    To evaluate the effect of the program, an interaction analysis was performed of one videotaped fifteen-minute consultation of each general practitioner (GP) at baseline and at twelve months. Both how the GP communicated with the patient and the number of current and anticipated issues the GP discussed with the patient were measured.

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Delphi Method

A Delphi study involves having experts categorize statements into different groups to help provide conceptual clarity. Downar and Hawryluck 2010 utilizes this method to understand discussions of code status and life support.

  • Downar, James, and Laura Hawryluck. 2010. What should we say when discussing “code status” and life support with a patient? A Delphi analysis. Journal of Palliative Medicine 13:185–195.

    DOI: 10.1089/jpm.2009.0269Save Citation »Export Citation »E-mail Citation »

    A Delphi study about the ideal content of a discussion of CPR-generated statements, including framing the discussion about “goals of care”; describing a cardiac arrest, life-sustaining therapy, CPR, and palliative team care; describing what happens after a cardiac arrest; respecting a patient’s beliefs; offering a prognosis; and trust and rapport.

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Palliative Team Care

Palliative team care focuses on providing comfort rather than emphasizing a cure per se, although palliative/supportive care and traditional medical curative care may be and typically are now provided simultaneously. Palliative care is a team-based approach that brings together care providers from a multitude of backgrounds, including chaplains, psychologists, psychiatrists, nutritionists, and occupational and physical therapists. Rhondali, et al. 2013 provides data indicating a preference for the label “supportive care” as opposed to “palliative care” among care providers, as they perceive that patients respond more favorably to the former. As individuals are living longer, palliative team care at end of life is becoming more and more relevant. The first National Consensus Report on Medical Education for Care Near the End of Life emphasized, among other issues, providing hospice or palliative care within the home. Despite the apparent value of the relief of suffering made available by palliative care teams, only a minority of dying individuals are offered palliative team care; most of those are offered such care at a point that is really too late to relieve much of their suffering. Instead, most individuals suffer much more at end of life than is necessary. This is frequently due to the conception that palliative care means that health-care providers have given up on patients, when in reality palliative team care and traditional curative medicine can, should, and frequently do exist simultaneously. Even do not resuscitate (DNR) orders do not mean that patients will not be treated; resuscitation and treatment are two different things. The research on palliative team care, such as that in Heyland, et al. 2008, does indicate factors that moderate preferences for treatment at end of life, which must be considered by family and health-care providers. Sahm, et al. 2005 confirms this, as does the application of palliative team care constructs to cardiology as described in Greene, et al. 2011. Most consistently, the research indicates the difficulty of initiating discussion about palliative team care. Clover, et al. 2004 reports that patients desire such discussions but generally feel that care providers should begin them. The available research (e.g., Freytag 2012; Goldsmith, et al. 2013; Pollak, et al. 2011) provides guidelines for these conversations.

  • Clover, Alexandra, Jan Browne, Peter McErlain, and Bernadette Vandenberg. 2004. Patient approaches to clinical conversations in the palliative care setting. Journal of Advanced Nursing 48:333–341.

    DOI: 10.1111/j.1365-2648.2004.03202.xSave Citation »Export Citation »E-mail Citation »

    Palliative team care patients often adopt passive roles and tend not to engage in important decision making. Professionals should facilitate an open, trusting relationship with patients in order to ensure that important information passes freely in both directions. Professionals should learn to prioritize patient participation and negotiation in their work.

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  • Freytag, Jennifer. 2012. Barriers that define a genre of shared decision making in palliative care communication. Journal of Communication in Healthcare 5:140–146.

    DOI: 10.1179/1753807612Y.0000000011Save Citation »Export Citation »E-mail Citation »

    Although shared decision making is consistently advocated in health care, current research points to failed communication among patients, their families, their physicians, and other caregivers as a reason why palliative team care is underutilized. Rhetorical genre theory is used to provide suggestions to increase shared decision making in palliative team care.

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  • Goldsmith, Joy, Betty Ferrell, Elaine Wittenberg-Lyles, and Sandra Ragan. 2013. Palliative care communication in oncology nursing. Clinical Journal of Oncology Nursing 17:163–167.

    DOI: 10.1188/13.CJON.163-167Save Citation »Export Citation »E-mail Citation »

    Noting that oncology nurses exhibit unusual distress when communicating with patients and family members about palliative team care and end-of-life issues, the authors offer a curriculum based on the eight domains of the National Consensus Project for Palliative Care. COMFORT is a holistic model for narrative clinical communication.

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  • Greene, Emilie, Clare Gardiner, Merryn Gott, and Christine Ingleton. 2011. Exploring the extent of communication surrounding transitions to palliative care in heart failure: The perspective of health professionals. Journal of Palliative Care 27:107–116.

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    Building on the authors’ earlier narrative review of relevant research, this qualitative study identifies emergent themes in interviews with cardiologists. The uncertainty and unpredictability of the heart failure trajectory, the use of structured pathways in palliative team care, and the differences between heart and cancer patients were key issues.

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  • Heyland, Daren K., Peter Dodek, Graeme Rocker, et al. 2008. What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Canadian Medical Association Journal 174.5: 627–633.

    DOI: 10.1503/cmag.050626Save Citation »Export Citation »E-mail Citation »

    Rated most important by participants were trust and confidence in the doctors, not being kept alive on life support when there is little hope, that information be communicated in an honest manner, completing things, and preparing for life’s end. This includes life review, resolving conflicts, and saying goodbye.

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  • Pollak, Kathryn I., Julie W. Childers, and Robert M. Arnold. 2011. Applying motivational interviewing techniques to palliative care communication. Journal of Palliative Medicine 14:587–592.

    DOI: 10.1089/jpm.2010.0495Save Citation »Export Citation »E-mail Citation »

    Suggests that motivational interviewing techniques are useful for those working with patients who express ambivalence or resistance to palliative team care as well as for clinicians who struggle with how to support patient autonomy when they disagree with patient choices. Notes that motivational interviewing techniques help patients make choices that are consistent with patient values.

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  • Rhondali, W., S. Burt, E. Wittenberg-Lyles, E. Bruera, and S. Dalal. 2013. Medical oncologists’ perception of palliative care programs and the impact of name change to supportive care on communication with patients during the referral process: A qualitative study. Palliative & Supportive Care 11.5: 397–404.

    DOI: 10.1017/S1478951504040544Save Citation »Export Citation »E-mail Citation »

    Interviews with seventeen oncologists showed that “supportive care” was perceived as an important time-saving application, as were symptom control, transitioning to end-of-life care, family counseling, and improving patients’ ability to tolerate cancer therapies. The majority supported the name change from “palliative care,” as they perceived their patients preferred it.

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  • Sahm, S., R. Will, and G. Hommel. 2005. What are cancer patients’ preferences about treatment at the end of life, and who should start talking about it? A comparison with healthy people and medical staff. Support Care Cancer 13:206–214.

    DOI: 10.1007/s00520-004-0725-zSave Citation »Export Citation »E-mail Citation »

    Cancer patients wanted treatment with antibiotics and infringing treatments such as chemotherapy and dialysis significantly more often than healthy controls, nursing staff, and physicians. This was especially high in those with reduced health and older age. All groups agreed on advance directives and that the provider should initiate discussion.

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Suffering

Because one goal of palliative team care and other changes in treatment/care at end of life is reduced suffering, it is appropriate to examine the research that has specifically looked at how various approaches impact suffering. Weiner and Roth 2006 relates this to avoiding iatrogenic harm during end-of-life treatment. In general, the research indicates that continuing curative treatment as end-of-life approaches increases suffering for both the patient and the family and a movement toward palliative team care (which may be combined with continuing curative treatment) reduces suffering. In this regard, Montoya-Juarez, et al. 2013 helps define suffering, and O’Grady, et al. 2012 discusses the role of anger in the suffering process.

  • Montoya-Juarez, Rafael, Mari a Paz Garcia-Caro, Campos-Calderon Concepcion, et al. 2013. Psychological responses of terminally ill patients who are experiencing suffering: A qualitative study. International Journal of Nursing Studies 50:53–62.

    DOI: 10.1016/j.ijnurstu.2012.08.016Save Citation »Export Citation »E-mail Citation »

    Suffering includes feelings of threat and impotence. Phenomenologically based interviews identified a theme that nurses can address with suffering patients—“to realize that life is short”—with three categories in which the different ways of facing the end of life concentrate: “reevaluation of life,” “opportunity for growth,” and “resignation/acceptance.”

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  • O’Grady, Eileen, Laura Dempsey, and Carole Fabby. 2012. Anger: A common form of psychological distress among patients at the end of life. International Journal of Palliative Nursing 18:592–596.

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    Anger at end of life is to be expected and can be a coping mechanism and a form of tension release but can also be dysfunctional and prevent ultimate acceptance. For some patients, anger can cause more distress than physical suffering. Support is needed from the interdisciplinary palliative care team.

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  • Weiner, Joseph S., and Jesse Roth. 2006. Avoiding Iatrogenic harm to patient and family while discussing goals of care near the end of life. Journal of Palliative Medicine 9:451–463.

    DOI: 10.1089/jpm.2006.9.451Save Citation »Export Citation »E-mail Citation »

    Omission of the integral emotional and social elements of the goals of care discussion are reflected in five clinician behaviors; these may impair medical decision making and induce patient and family suffering. Impaired decision making and suffering may contribute to demands for ineffective, life-sustaining interventions or, conversely, to requests for hastened death.

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Quality of Life

In addition to a hoped-for reduction in suffering at end of life, palliative/supportive care is designed to improve quality of life as death approaches. A key part of this is controlling the four types of pain: acute (sharp but temporary), persistent chronic (lasts for more than six months, may be the result of an old injury or a chronic health problem), phantom (a result of amputation, but is real, not imaginary), and radiating (moves from the site of origin to another part of the body). Pain impacts anxiety, depression, and hopelessness as well as creating a significant negative effect on daily life. An emphasis on quality rather than quantity of life is an important one and is generally valued by both patients and, ultimately, family members, although some family members do not recognize this value until after the death of the patient. Johansson, et al. 2006 provides suggestions for maintaining quality of life, and Hechler, et al. 2008 focuses on distressing symptoms for children facing end of life. Lyon, et al. 2010, a study of adolescents engaging in advanced care planning (ACP), indicated no negative effects of such on anxiety and depression. Bergstraesser 2013 discusses relevant principles in relation to children, while Teno, et al. 2011 looks at quality of dying in addition to quality of life. In contrast, Trotta 2007 argues for an emphasis on the process of dying itself rather than quality-of-life issues.

  • Bergstraesser, Eva. 2013. Pediatric palliative care—When quality of life becomes the main focus of treatment. European Journal of Pediatrics 172:139–150.

    DOI: 10.1007/s00431-012-1710-zSave Citation »Export Citation »E-mail Citation »

    Notes that if a need for palliative team care is established, useless and potentially harmful treatments may stop and informed choices can be made about the remaining time. Palliative team care can improve the child’s remaining lifetime by focusing on quality of life and goals as defined by the child’s family.

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  • Hechler, T., M. Blankenburg, S. J. Friedrichsdorf, et al. 2008. Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Pädiatr 220:166–174.

    DOI: 10.1055/s-2008-1065347Save Citation »Export Citation »E-mail Citation »

    The distressing symptoms were fatigue, pain, loss of appetite, and dyspnea—rarely treated successfully. Fifty percent of the children obtained cancer therapy at the end of life, which the parents regretted. Forty-eight percent of the children died at home even though 88 percent of the parents preferred home death.

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  • Johansson, Christina Melin, Bertil Axelsson, and Ella Danielson. 2006. Living with incurable cancer at the end of life: Patients’ perceptions on quality of life. Cancer Nursing 29:391–399.

    DOI: 10.1097/00002820-200609000-00007Save Citation »Export Citation »E-mail Citation »

    Indicates that patients who are dying are able to maintain an acceptable quality of life by focusing on the value of the ordinary, alleviation of suffering, significant relationships, positivity in attitudes, and being in charge of and reflective on their lives. They maintained daily activities and a social life.

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  • Lyon, Maureen E., Patricia A. Garvie, Linda Briggs, et al. 2010. Is it safe? Talking to teens with HIV/AIDS about death and dying: A 3-month evaluation of family centered advance care (FACE) planning—Anxiety, depression, quality of life. HIV/AIDS: Research and Palliative Care 2:27–37.

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    The intervention participants completed advance directives more than controls. Neither anxiety nor depression increased at clinically or statistically significant levels postintervention. FACE adolescents maintained quality of life. FACE families perceived their adolescents as worsening in their school and emotional quality of life at three months compared with controls.

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  • Teno, Joanne L., Pedro L. Gozalo, Ian C. Lee, et al. 2011. Does hospice improve quality of care for persons dying from dementia? Journal of the American Geriatrics Society 59:1531–1536.

    DOI: 10.1111/j.1532-5415.2011.03505.xSave Citation »Export Citation »E-mail Citation »

    Looks at bereaved perceptions of the quality of end of life for family members who did and did not receive hospice care. Looks also at quality of the dying experience. Evaluates unmet needs. Significant differences are noted between the two groups. Hospice care improved quality of life and of dying.

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  • Trotta, Rebecca. 2007. Quality of death: A dimensional analysis of palliative care in the nursing home. Journal of Palliative Medicine 10:1116–1127.

    DOI: 10.1089/jpm.2006.0263Save Citation »Export Citation »E-mail Citation »

    This dimensional analysis suggests that the focus of palliative care should be on the nursing-home resident and the dying experience rather than on quality of life and issues around living that exclude the dying experience and do not acknowledge the personhood and identity of the resident.

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Hospice

Consistent with palliative team care, hospice is a movement toward death with dignity. The two operate hand in hand. Hospice can be a place that allows emphasis on relieving suffering and improving quality of life as death approaches—this can be a separate facility or an area of a health-care facility such as a hospital. In many cases, however, hospice care can be provided in the home with appropriate help. Providing full-time care to a family member is not easy, so support staff may be brought in. Hospice nurses and other care providers are involved in providing care to the patient. The goal is to support both the family and the patient as the end approaches. Most patients indicate a preference for dying at home, although few are able to do so. This is typically because curative treatment extends well beyond the point that it should, and palliative team care begins too late, as evidenced by Csikai 2006 and Casarett and Quill 2007. Thus most patients die in the hospital rather than at home. Dy, et al. 2011 provides suggestions to help avoid these consequences. Similarly, Hawthorne and Yurkovich 2004 discusses how hope changes during hospice care.

  • Casarett, David J., and Timothy E. Quill. 2007. “I’m not ready for hospice”: Strategies for timely and effective hospice discussions. Annals of Internal Medicine 146:443–449.

    DOI: 10.7326/0003-4819-146-6-200703200-00011Save Citation »Export Citation »E-mail Citation »

    The biggest communication barrier is that physicians are unsure about how to talk with patients clearly and directly about their poor prognosis and limited treatment options without depriving them of hope. This article describes a structured strategy for discussing hospice to make hospice discussions both more compassionate and more effective.

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  • Csikai, Ellen L. 2006. Bereaved hospice caregivers’ perceptions of the end-of-life care communication process and the involvement of health care professionals. Journal of Palliative Medicine 9:1300–1309.

    DOI: 10.1089/jpm.2006.9.1300Save Citation »Export Citation »E-mail Citation »

    Bereaved caregivers indicated that the need for hospice care was first mentioned by physicians but recalled only one meeting in which hospice was discussed. Social workers were reported to be most comfortable discussing end-of-life care. Other providers needed to discuss vital information earlier and be more forthcoming about the reality of death.

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  • Dy, Sydney M., Hayashree Roy, Geoffrey E. Ott, et al. 2011. Tell Us™: A web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection, and use. Journal of Pain and Symptom Management 42:526–534.

    DOI: 10.1016/j.jpainsymman.2010.12.006Save Citation »Export Citation »E-mail Citation »

    Includes modules for authoring clinical queries and completion schedules, for enrolling clinical sites for patients and/or families to complete assessments, and for providers to view patient-reported data. Provides automated provider e-mail alerts based on patient responses (such as uncontrolled symptoms or need for medication refills) and targeted educational materials.

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  • Hawthorne, Denise L., and Nancy J. Yurkovich. 2004. Hope at the end of life: Making a case for hospice. Palliative & Supportive Care 2:415–417.

    DOI: 10.10170/S1478951504040544Save Citation »Export Citation »E-mail Citation »

    In the final days, hope changes. There is still an expectation for a positive future. However, the focus of hope is different; it rests more in being than doing. When the probability of death is imminent and the need for finding meaning more acute, relationship becomes more important and more intense.

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A Good Death

The common conceptualization of a good death in the dying and death literature is one that allows patients and family to make peace with each other, to minimize pain and suffering, to accept impending death, and to die in comfortable surroundings. It should be observed, however, that there are many different conceptualizations of a good death. The analyses provided by Beckstrand, et al. 2006; Forest 2004; and Werth 2005 are consistent with this conceptualization. Note, however, Julia Lawton’s very different perspective on this issue (see Lawton 2000, cited under Core Texts). Tan and Manca’s 2013 work on a good death focuses on conflict between providers and family members, whereas the emphasis in Costello 2006 is very different, emphasizing the impact on the ward. These pieces view a good death very differently than the patient-centered focus of some of the research. Even among the patient-centered work, different conceptualizations and emphases are evident.

  • Beckstrand, Renea L., Lynn Clark Callister, and Karin T. Kirchhoff. 2006. Providing a “good death”: Critical care nurses’ suggestions for improving end-of-life care. American Journal of Critical Care 15:38–46.

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    A survey of critical-care nurses led to suggestions for providing a good death, including not allowing patients to be alone while dying, managing patients’ pain and discomfort, knowing and following patients’ wishes, promoting earlier cessation of treatment or not initiating aggressive treatment at all, and communicating effectively as a team.

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  • Costello, John. 2006. Dying well: Nurses’ experiences of “good and bad” deaths in hospital. Journal of Advanced Nursing 54:594–601.

    DOI: 10.1111/j.1365-2648.2006.03867.xSave Citation »Export Citation »E-mail Citation »

    Interviews and semiotic analysis suggest that good and bad death experiences were constructed according to their impact on the sentimental order of the ward. Good and bad deaths focused less on patients’ needs and the dying process and more on the death event and nurses’ abilities to manage organizational demands.

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  • Forest, Paula K. 2004. Being there: The essence of end-of-life nursing care. Urologic Nursing 24:270–279.

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    Notes that urologic nursing focuses less on end-of-life care but that they too are obligated to meet end-of-life needs for patients and provide crucial information and support. Effort must be exerted to increase knowledge about the normal dying process, symptom management, and supporting patients in desires for a “good death.”

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  • Tan, Amy, and Donna Manca. 2013. Finding common ground to achieve a “good death”: Family physicians working with substitute decision-makers of dying patients: A qualitative grounded theory study. British Medical Center: Family Practice 14:14–25.

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    Conflict between physicians and surrogate decision makers contributes to a “bad death” experience. Finding common ground to achieve a “good death” for the patient includes building mutual trust and rapport through identifying key players and delivering manageable amounts of information; understanding one another through active listening; and making informed, shared decisions.

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  • Werth, James A. 2005. Becky’s legacy: Personal and professional reflections on loss and hope. Death Studies 29:687–736.

    DOI: 10.1080/07481180500204956Save Citation »Export Citation »E-mail Citation »

    This story provides a background for discussing end-of-life issues, including what constitutes a “good death,” concerns about aggressive treatment and the cost of care near the end of life, prognosis, advance directives, and demographic issues. There is also a major section on psychosocial issues that arise when a person is dying.

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Children

Although dying and death are always difficult processes, working with a child who is facing death or who has lost a parent are especially challenging. The concerns that are relevant to these issues are similar to those discussed in other areas of the dying and death research but tend to be even more problematic. Although it would be possible to talk about many different populations, the work in this area rarely uses special populations beyond children as a focus. Two different foci are apparent in this literature—children who are dying and children who have lost or will soon lose loved ones. Issues to be addressed in regard to children and dying include children’s conceptualizations of death and how these change as they move into adolescence; the influence of religion on different orientations toward death (contrasting, for instance, Protestantism, Catholicism, Judaism, and Islam); therapeutic techniques for dying, bereaved, and soon-to-be-bereaved children; as well as the influence of media on children’s death conceptualizations. The research indicates that, like adults, children usually know that they are dying. Open communication is more useful than is denial of impending terminality. Palliative team care is avoided in the pediatric world even more than with adults. Just as children benefit by open communication about their own impending death, they also benefit when the impending death of a parent is acknowledged rather than ignored.

Dying Children

Several key issues are especially pertinent to children who are dying. Issues to be addressed in regard to children and dying include children’s conceptualizations of death and how these change as they move into adolescence. Hinds, et al. 2005 focuses on the impact of a good death for children on the remainder of the family members, whereas Price, et al. 2013 identifies themes in parent and professional perspective on caring for children at end of life. Subtle distinctions in terminology are discussed in Jones, et al. 2008, with important implications. Kopelman 2006 helps care providers understand the reasons that parents are resistant to the withdrawal of treatment when it is futile; this resistance is further substantiated in Dighe, et al. 2008. Dunlop 2008 notes that, like adults, children are aware that they are dying. Washam 2010 describes the reality that, as with adults, care providers are reluctant to offer palliative team care to children. Importantly, Moro, et al. 2011 provides strong evidence of parental perceptions that the care received by their dying children was not adequate—that providers did not do all that could be done.

  • Dighe, Manjiri, Sunita Jadhav, Mary Ann Muckaden, and Anuradha Sovani. 2008. Parental concerns in children requiring palliative care. Indian Journal of Palliative Care 14:16–22.

    DOI: 10.4103/0973-1075.41927Save Citation »Export Citation »E-mail Citation »

    Parents of dying children in India were reluctant to discuss disease and dying with the child. Siblings were rarely told or directly involved in care. There was resistance to allowing the palliative care team to communicate with the patient. Results show parental attitudes hinder open communication with dying children in India.

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  • Dunlop, Susan. 2008. The dying child: Should we tell the truth? Paediatric Nursing 20:28–31.

    DOI: 10.7748/paed2008.07.20.6.28.c6628Save Citation »Export Citation »E-mail Citation »

    Dying children are usually aware of their terminal state; denial is rarely useful. Creation of a truthful care environment requires development of appropriate skills and attitudes in professionals, use of research evidence, ongoing assessment of the child and family’s communication needs, and support for members of the multidisciplinary care team.

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  • Hinds, Pamela A., Lisa Schum, Justin N. Baker, and Joanne Wolfe. 2005. Key factors affecting dying children and their families. Journal of Palliative Medicine 8:S70–S78.

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    A good death for children has long-term effects on the surviving family members. Key factors include minimizing suffering, encouraging open communication and involvement in decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and preparation of providers to give competent end-of-life care.

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  • Jones, Barbara, Jessica Parker-Raley, Henee Higgerson, LeeAnn Christif McCoy, Sarah Legptt, and Julie Greathouse. 2008. Finding the right words: Using the terms allow natural death (AND) and do not resuscitate (DNR) in pediatric palliative care. Journal for Healthcare Quality 30:55–63.

    DOI: 10.1111/j.1945-1474.2008.tb01162.xSave Citation »Export Citation »E-mail Citation »

    Providers helping families make end-of-life decisions for children typically use the term “do not resuscitate” but the term “allow natural death” is another option. The later term is somewhat ambiguous but is more family centered. The subtle difference in language is less biomedical and more appropriate for loved ones.

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  • Kopelman, Arthur E. 2006. Understanding, avoiding, and resolving end-of-life conflicts in the NICU. Mount Sinai Journal of Medicine 73:580–586.

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    Understanding the reasons that parents want to continue life support against the recommendations of providers may lead to more productive handling of conflicts. These reasons include failure to comprehend prognosis, religious beliefs, lack of confidence in medical diagnosis/prognosis, belief that more can be done, and disagreement about seriousness of outcome.

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  • Moro, Teresa T., Karen Kavanaugh, Teresa A. Savage, Maria R. Reyes, Robert E. Kimua, and Rama Bhat. 2011. Parent decision making for life support decisions for extremely premature infants: From the prenatal through end-of-life period. Journal of Perinatal and Neonatal Nursing 25:52–60.

    DOI: 10.1097/JPN.0b013e31820377e5Save Citation »Export Citation »E-mail Citation »

    Interviews indicated that mothers of extremely premature infants indicated that they wanted “everything done” for their infants in the delivery room, regardless of the likely success of the efforts. They did not feel this was done. Care providers and parents all reported great suffering; parents frequently reported anger at care providers.

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  • Price, Jayne, Joanne Jordan, and Lindsay Prior. 2013. A consensus for change: Parent and professional perspectives on care for children at the end-of-life. Issues in Comprehensive Pediatric Nursing 36:70–87.

    DOI: 10.3109/01460862.2013.779765Save Citation »Export Citation »E-mail Citation »

    Focus groups identified six themes: truth telling, symptom management, communication with and relationships between families and professionals, emotional impact, the withdrawal of feeding or treatment, and sibling support. Palliative team care was initiated too late and was not well coordinated. More structured bereavement services were needed, including addressing needs of siblings.

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  • Washam, Cynthia. 2010. Fears, misconceptions keeping children from best end-of-life care. Oncology Times 32:50–53.

    DOI: 10.1097/01.COT.0000383770.81923.6cSave Citation »Export Citation »E-mail Citation »

    The more children suffer at end of life, the more parents desire to end that suffering. Most patients suffer significantly at end of life. Physicians are more likely to say “there’s nothing we can do” than to offer palliative team care; this should be offered early.

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Children of Dying Parents

Although there is no doubt of the difficulty of losing a child, the loss of a parent when a child is young is also incredibly difficult to handle. A key question to be addressed is whether a child should be told that a parent is dying, as discussed in MacPherson 2005; Grenklo, et al. 2013 indicates positive consequences when the children did receive end-of-loss medical information before the loss.

  • Grenklo, Tove Bylund, Ulrika C. Kreicbergs, Unnur A. Valdimarsdóttir, Tommy Nyberg, Gunnar Steineck, and Carl Johan Fürst. 2013. Communication and trust in the care provided to a dying parent: A nationwide study of cancer-bereaved youths. Journal of Clinical Oncology 31.23: 2886–2894.

    DOI: 10.1200/JCO.2012.46.6102Save Citation »Export Citation »E-mail Citation »

    Survey of children who had previously lost a parent showed that those who received end-of-life medical information before their loss trusted the care provided more and were less depressed afterward. Distrust was higher in those who reported poor efforts to cure and had a poor relationship with the surviving parent.

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  • MacPherson, Catriona. 2005. Telling children their ill parent is dying: A study of the factors influencing the well parent. Mortality 10:113–126.

    DOI: 10.1080/13576270500102872Save Citation »Export Citation »E-mail Citation »

    Interviews of parents who had to make a decision about whether to tell a child that the other parent was dying indicated that parents who talked to each other were more able to talk to the children; children who were told about the impending death were better prepared for it.

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Families

As noted by Andershed 2005, few individuals die by themselves; most die within a familial context. Families typically become more involved in health care as a loved one approaches the end of life, as Meeker and Jezewski 2005 notes. This is due to three factors: the seriousness of the health conditions facing individuals, the emotional/relational issues that must be faced, and the possibility of decreased decision-making competency on the part of the dying individual. The research on the role of families in end-of-life care identifies the concerns that are particularly relevant to this context and provides guidelines about how to approach them. Hauser, et al. 2006 finds that families were frequently not accurate sources about patient needs and pain, although Moorman 2011 finds that people perceived that their partners were accurate. Additionally, the increased reliance on hospice and palliative team care has led to the common use of family meetings/conferences as a patient approaches end of life. In general, family members are more reluctant to acknowledge that a person is dying than is the person him/herself. Families are frequently key sources of conflict in medical care as it relates to terminality. Families are more reluctant to discuss or allow palliative team or hospice care. Caughlin, et al. 2011 studies the role of the family in great detail, identifying the great levels of denial. The Family Meeting or Conference is a tool that is used to more productively encourage decision making as end-of-life approaches. Wittenberg-Lyles, et al. 2013 provides a useful typology of family roles at end of life, and Gardner 2008 looks at the dyadic level of support.

  • Andershed, Birgitta. 2005. Relatives in end-of-life care—Part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing 15:1158–1169.

    DOI: 10.1111/j.1365-2702.2006.01473.xSave Citation »Export Citation »E-mail Citation »

    A systematic search of the literature shows that analytic evidence is unequivocal: Good patient care, communication, information, and the attitude of the professional are of decisive importance regarding relatives’ situations. Providers may facilitate relatives’ involvement based on the family’s wishes and limiting the stress and difficulties experienced by the family.

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  • Gardner, Daniel S. 2008. Cancer in a dyadic context: Older couples’ negotiation of ambiguity and search for meaning at the end of life. Journal of Social Work in End-of-Life & Palliative Care 4:135–159.

    DOI: 10.1080/15524250802353959Save Citation »Export Citation »E-mail Citation »

    Older couples in which one person is terminally ill must balance the provision of care with respect for autonomy, aggressive treatment with quality of life, and individual with dyadic understandings and preferences. Patterns of relationship, support, and communication are examined through interviews in this ambiguous and uncertain context.

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  • Hauser, Joshua M., Chih-Hung Chang, Hillel Alpert, DeWitt Baldwin, Ezekiel J. Emanuel, and Linda Emanuel. 2006. Who’s caring for whom? Differing perspectives between seriously ill patients and their family caregivers. American Journal of Hospice & Palliative Medicine 23:105–112.

    DOI: 10.1177/104990910602300207Save Citation »Export Citation »E-mail Citation »

    Patients and their caregivers frequently differ on reports of important data. This large-scale study showed that caregivers reported higher levels of pain and disability than patients, lower caregiving needs, and different fears about the future. These differences are important if providers rely on caregiver rather than patient reports of needs.

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  • Meeker, Mary Ann, and Mary Ann Jezewski. 2005. Family decision making at end of life. Palliative & Supportive Care 3:131–142.

    DOI: 10.1017/S1478951505050212Save Citation »Export Citation »E-mail Citation »

    Systematic review of family surrogate decision making at end of life. Surrogates demonstrated low to moderate predictive accuracy. Increased accuracy occurred in more extreme scenarios, under conditions of forced choice, and when the surrogate was specifically directed to use substituted judgment. Families did want to be involved in decision making.

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  • Moorman, Sara M. 2011. The importance of feeling understood in marital conversations about end-of-life health care. Journal of Social and Personal Relationships 28:100–116.

    DOI: 10.1177/0265407510386137Save Citation »Export Citation »E-mail Citation »

    Associations among marital quality, the perception of having been understood following discussion, and intentions regarding who to appoint as a health-care surrogate are examined. Most respondents reported that their partners understood their preferences extremely well. Respondents’ perceptions of high marital quality were associated with feeling extremely well understood.

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  • Wittenberg-Lyles, Elaine, Joy Goldsmith, George Demris, Debra Parker Oliver, and Jacob Stone. 2013. The impact of family communication patterns on hospice family caregivers: A new typology. Journal of Hospital Palliative Nursing 14:25–33.

    DOI: 10.1097/NJH.0b013e318233114bSave Citation »Export Citation »E-mail Citation »

    Four hospice caregiver types were identified: manager (one dominant and determines communication patterns), carrier (low conversation and high conformity;protective communication pattern), partner (high conversation and low conformity; family members share in decision making), and loner (low conversation and low conformity; little support or assistance for the lead caregiver).

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The Family Meeting or Conference

As a part of end-of-life and palliative team care interaction, it has become common to have a family meeting or conference that includes the patient (if possible), the interdisciplinary health-care team, and family members. Three purposes of family meetings are discussed in Michelson, et al. 2011, and some key concerns that should be addressed within them are identified in Lautrette, et al. 2006. This meeting may be led by a palliative care provider or the specialist in charge of the patient’s care, such as an oncologist. The goal of such meetings is to promote open sharing of information and communication and to enable the care providers and family to act as a team; it is hoped that consensus about care and treatment will emerge through such discussions. Hsieh, et al. 2006 delineates the categories of concerns that are discussed in family meetings. According to Curtis, et al. 2002, there are two frameworks for understanding family meetings. Of special interest are the missed opportunities identified in Curtis, et al. 2005 in follow-up research. Wittenberg-Lyles, et al. 2012 discusses the use of videoconferencing during such meetings.

  • Caughlin, John P., Sylvia A. Mikucki-Enyart, Ashley V. Middleton, Anne Stone, and Laura E. Brown. 2011. Being open without talking about it: A rhetorical/normative approach to understanding topic avoidance in families after a lung cancer diagnosis. Communication Monographs 78:409–436.

    DOI: 10.1080/03637751.2011.618141Save Citation »Export Citation »E-mail Citation »

    Interviews with adult children identified two broad areas of communicative avoidance (avoiding information and avoiding emotion) and three general ways of managing avoidance and openness (denial, segmentation, and being open while avoiding). Denial was a particularly dissatisfying means of managing competing goals, whereas being open while avoiding was more functional.

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  • Curtis, J. Randall, Ruth A. Engelberg, Marjorie D. Wenrich, et al. 2002. Studying communication about end-of-life care during the ICU family conference: Development of a framework. Journal of Critical Care 17:147–160.

    DOI: 10.1053/jcrc.2002.35929Save Citation »Export Citation »E-mail Citation »

    Develops two frameworks for describing and understanding family conference communication. The first describes communication content, including introductions, information exchange, discussions of the future, and closings. The second describes communication styles and support and includes active listening, acknowledging informational complexity and emotional difficulty of the situation, and supporting family decision making.

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  • Curtis, J. Randall, Ruth A. Engelberg, Marjorie D. Wenrich, Sarah E. Shannon, Patsy D. Treece, and Gordon D. Rubenfeld. 2005. Missed opportunities during family conferences about end-of-life care in the intensive care unit. American Journal of Respiratory and Critical Care Medicine 171:844–849.

    DOI: 10.1164/rccm.200409-1267OCSave Citation »Export Citation »E-mail Citation »

    Many physicians miss opportunities to initiate discussion that could decrease prolongation of dying. Three categories of missed opportunities emerged: listening and responding; acknowledging and addressing emotions; and pursuing key principles of medical ethics and palliative team care, including exploration of patient preferences, explanation of surrogate decision making, and affirmation of nonabandonment.

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  • Hsieh, Hsiu-Fang, Sarah E. Shannon, and J. Randall Curtis. 2006. Contradictions and communication strategies during end-of-life decision making in the intensive care unit. Journal of Critical Care 21:294–304.

    DOI: 10.1016/j.jcrc.2006.06.003Save Citation »Export Citation »E-mail Citation »

    Five categories emerged in family conferences: killing or allowing to die, death as a benefit or a burden, honoring the patient’s or the family’s wishes, weighing contradictory versions of the patient’s wishes, and choosing an individual or the family unit as the decision maker.

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  • Lautrette, Alexandra, Magoli Ciroldi, Hicham Kisbi, and Elie Axoulay. 2006. End of life family conferences: Rooted in the evidence. Critical Care Medicine 34:S362–S372.

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    Effective family conferences include reassurance that the patient’s symptoms will be adequately managed; provide honest, clear information about the patient’s condition; show a willingness to listen to the family and respond to emotions; attend to patient preferences; clearly explain surrogate decision making; and plan to provide continuous, compassionate, technologically proficient care until death.

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  • Michelson, Kelly Nicole, Linda Emanuel, Andrea Carter, Priscilla Brinkman, Marla L. Clayman, and Joel Frader. 2011. Pediatric intensive care unit family conferences: One mode of communication for discussing end-of-life care decisions. Pediatric Critical Care Medicine 12:e336–e343.

    DOI: 10.1097/PCC.0b013e3182192a98Save Citation »Export Citation »E-mail Citation »

    Identifies three purposes for family conferences: communication between clinicians and parents, communication among clinicians, and support of families. Challenges noted involve communicating with parents during family conferences such as difficulties associated with having multiple services involved, balancing messages of hope and realism, using understandable language, and communicating with non-English speakers.

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  • Wittenberg-Lyles, Elaine, Debra Parker Oliver, Robin L. Kruse, George Demiris, L. A. Gage, and Ken Wagner. 2012. Family caregiver participation in hospice interdisciplinary team meetings: How does it affect the nature and content of communication? Health Communication 28:110–118.

    DOI: 10.1080/10410236.2011.652935Save Citation »Export Citation »E-mail Citation »

    Videoconferencing may be used to facilitate the family caregiver’s participation in a hospice team meeting. Looks at differences between meetings that did and did not include caregivers in terms of length; task focus; amounts of socioemotional talk, biomedical education, and psychosocial counseling; and participation of social workers and chaplains.

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Spirituality and Religion

All individuals have something that they experience as spiritual. This becomes more relevant as an individual approaches end of life, although Williams 2006 notes that most doctors ignore the spiritual dimension. Ford, et al. 2012 identifies three levels of competence in this regard, with the highest being competence in discussions of spirituality. Providers are encouraged by most authors in this area to be nonjudgmental about individual experiences of spirituality. Religion is a structured frame around which individuals may see spirituality. It provides meaning and, frequently, community. Concepts of a higher being, the possibility of an afterlife, and communication with the higher power through prayer are central to many religious frameworks; Pevey, et al. 2008–2009 examines the role of prayer at end of life. Religion provides meaning to a person’s existence. The separation between religion and spirituality is relatively recent. Negative experiences with religion sometimes lead individuals to identify instead with spirituality. What is frequently just called “spirituality” is called by some “nonreligious spirituality.” All spirituality is related to issues of the sacred and transcendence. Recognition of the role of spirituality in palliative team care is ethically imperative, according to many scholars and practitioners. Providers who partner with chaplains frequently benefit from this collaboration and provide more fulfilling care for most patients. Different religions, of course, are also intertwined with cultural differences and must be recognized on both levels. Religiosity is also related to death anxiety and, according to Kessler 2007, to anger. Those who are religious but fear a negative afterlife due to their behavior during their lifetime are likely to experience more death anxiety than those who anticipate a positive afterlife. Much of the research on death anxiety or fear of death reviewed in the section on that topic has important implications for the role of spirituality/religiosity in the dying process. In general, end-of-life care pays little attention to these fundamental issues. Few care providers feel comfortable communicating about the issues with dying patients or their families, although many providers who do so find positive reactions if the topic is approached gently and with empathy; Fenwick and Brayne 2011 notes the import of empathy. Those care providers with evangelical religious beliefs are typically more comfortable discussing the issue with dying patients and their families, and, according to Ramondetta and Sills 2003, those physicians who identify as Christians are more likely to initiate discussions of religion at end of life. Keeley 2004 studies discussions of spirituality in final conversations. The Second National Consensus Project for Quality Palliative Care placed great emphasis on the role of spirituality in palliative team care, as noted in Puchalski, et al. 2009.

  • Fenwick, Peter, and Sue Brayne. 2011. End-of-life experiences: Reaching out for compassion, communication, and connection—Meaning of deathbed visions and coincidences. American Journal of Hospice & Palliative Care 58:7–15.

    DOI: 10.1177/1049909110374301Save Citation »Export Citation »E-mail Citation »

    Providing compassionate, understanding care and respect at end of life requires recognition of the need for spiritual connection and meaning. Data show that deathbed visions (seeing someone who has died) and deathbed coincidences (the dying person appearing to someone close to them) are common among the dying and should not be dismissed.

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  • Ford, Dee W., Lois Downey, Ruth Engelberg, Anthony L. Back, and J. Randall Curtis. 2012. Discussing religion and spirituality is an advanced communication skill: An exploratory structural equation model of physician trainee self-ratings. Journal of Palliative Medicine 16:63–70.

    DOI: 10.1089/jpm.2011.0168Save Citation »Export Citation »E-mail Citation »

    Basic competence in communication includes provider satisfaction with his or her level of palliative team care skills and DNR discussion, while intermediate competence includes responses to inappropriate treatment requests, issues of hope, and fear. Basic competence predicts intermediate competence, which then predicts competence in discussions of religious and spiritual issues.

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  • Keeley, Maureen P. 2004. Final conversations: Survivor’s memorable messages concerning religious faith and spirituality. Health Communication 16:87–104.

    DOI: 10.1207/S15327027HC1601_6Save Citation »Export Citation »E-mail Citation »

    Focuses on memorable messages recalled by survivors. Issues of religion or spirituality were discussed in twenty-six of the thirty final conversations studied. Validation for comfort and validation for community were major themes. Conversations focused on actually enacting or living one’s spirituality, being involved in the dying process, and engagement.

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  • Kessler, David. 2007. The needs of the dying. New York: Harper & Row.

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    Spirituality at end of life focuses on getting rid of anger and resentment and moving toward peace, forgiveness, and meaning. Stages of spiritual reconciliation include expression of feelings; taking responsibility for one’s life; forgiveness of oneself, others, or God; acceptance of what is now occurring; and gratitude for life, both the good and bad.

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  • Pevey, Carolyn F., Thomas J. Jones, and Annice Yarber. 2008–2009. How religion comforts the dying: A qualitative inquiry. Omega 58:41–59.

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    Based on interviews with dying individuals. When religion does comfort those who are dying, it does so by offering a relationship to the dying individual, giving the person hope of life after death, providing identification, and assuring a cosmic order. Builds on the work of symbolic interactionist Ernest Becker.

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  • Puchalski, Christina, Betty Ferrell, Rose Virani, et al. 2009. Improving the quality of spiritual care as a dimension of palliative care: The report of the Consensus Conference. Journal of Palliative Medicine 12:885–904.

    DOI: 10.1089/jpm.2009.0142Save Citation »Export Citation »E-mail Citation »

    The Second Consensus Conference on Palliative Care was based on the belief that spiritual care is a fundamental component of quality palliative care. The conference recommendations build on prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices.

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  • Ramondetta, Lois M., and Deborah Sills. 2003. Spirituality and religion in the “art of dying.” Journal of Clinical Oncology 21:4460–4462.

    DOI: 10.1200/JCO.2003.01.109Save Citation »Export Citation »E-mail Citation »

    Survey of 328 gynecologic oncologists indicated that a physician’s discomfort with dealing with dying related to his or her religious beliefs. Those physicians who identified as Christians had less difficulty talking with their patients about death and had less death anxiety than did physicians of other religions.

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  • Williams, Anna-Leila. 2006. Perspectives on spirituality at the end of life: A meta-summary. Palliative & Supportive Care 4:407–417.

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    This meta-analysis examines the spirituality of elder adults nearing the end of their lives as well as investigating the connection between spirituality and functional, physical, and psychosocial results in health care. Most end-of-life research neglects the spiritual dimension and is unsatisfactory in terms of guiding research and practice.

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Cultural Awareness and Sensitivity

In light of increased cultural diversity and immigration in most countries, experts on end-of-life communication generally urge high levels of awareness of the impact of cultural differences on values and practices as death approaches. The studies generally reveal issues that are particularly relevant to different cultures and discuss ways to attempt to elicit the values underlying various end-of-life concerns and practices, including death rituals. Ko, et al. 2013 focuses on elderly Korean adults, while de Graaff, et al. 2012 looks at Turkish and Moroccan patients and Chaturvedi, et al. 2009 studies patients in India. Quinones-Gonzalez 2013 looks at Hispanic and Latino individuals. Wiener, et al. 2013 identifies how cultural and religious differences interact. Sharma and Dy 2011 looks at cultural differences in the family meeting. Diver, et al. 2008, however, draws a different conclusion. The authors argue that the similarities among human beings are more apparent in the interviews they conducted than were cultural differences and urge a lack of emphasis on cultural stereotypes. An important new concept is introduced in Tervalon and Murray-Garcia 1998—cultural humility rather than an emphasis on cultural differences per se.

  • Chaturvedi, Santosh K., Carmen G. Loiselle, and Prabha S. Chandra. 2009. Communication with relatives and collusion in palliative care: A cross-cultural perspective. Indian Journal of Palliative Care 15:2–9.

    DOI: 10.4103/0973-1075.53485Save Citation »Export Citation »E-mail Citation »

    Handling collusion is especially problematic in palliative team care within families of certain cultural backgrounds. Particularly in palliative team care, the transition from curative to palliative treatment and discussion of dying and death are often topics where collusion is apparent. Collusion manifests differently in Indian and Western cultures.

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  • de Graaff, Fuusje M., Patriek Mistiaen, Walter L. J. M. Devillé, and Anneke L. Francke. 2012. Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: A systematic literature review. British Medical Journal 11:17–54.

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    Systematic review of fifty-four studies on immigrant patients in the Netherlands. Relatives were influential in end-of-life decisions, including the decision to withdraw or withhold treatments. The diagnosis, prognosis, and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited.

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  • Diver, Fiona, Alexander Molassiotis, and Les Weeks. 2008. The palliative care needs of ethnic minority patients attending a day-care centre: A qualitative study. International Journal of Palliative Nursing 9:389–396.

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    Phenomenologically based study relying on qualitative interviews of four ethnic minority patients who were regular attendees at an adult day-care center. Results indicated a focus on basic human needs rather than culturally specific needs. The authors encourage a lack of emphasis on cultural stereotypes and treatment of individuals as such.

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  • Ko, Eunjeong, Holly Nelson-Becker, Youngjoon Park, and Minjung Shin. 2013. End-of-life decision making in older Korean adults: Concerns, preferences, and expectations. Educational Gerontology 39:71–81.

    DOI: 10.1080/03601277.2012.682947Save Citation »Export Citation »E-mail Citation »

    Interviews with elderly Korean adults indicated several themes in relevance to interactions with physicians: (1) life-sustaining treatments and hope for quality of life, (2) physician expert status, (3) truth-telling and ethics, (4) preferred way to disclose bad news, (5) physician’s role to treat, and (6) potential misuse of life-sustaining treatments.

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  • Quinones-Gonzalez, Sonia. 2013. Bridging the communication gap in hospice and palliative care for Hispanics and Latinos. Omega 67:193–200.

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    The large increase of Hispanic and Latino individuals in the United States has led to a need to develop an intervention to increase the participation of such individuals in hospice and palliative team care. The program outlined herein attempts to improve participation by 200 percent. Within two years, participation was increased by 900 percent.

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  • Sharma, Rashmi K., and Sydney M. Dy. 2011. Cross-cultural communication and use of the family meeting in palliative care. American Journal of Hospice & Palliative Medicine 28:437–444.

    DOI: 10.1177/1049909110394158Save Citation »Export Citation »E-mail Citation »

    Guidelines are generated for preparing for, conducting, and ending family meetings at end of life within families from different cultural backgrounds. Diversity concerns are outlined, including those pertaining to providing medical information, eliciting values, truth-telling, death rituals, feeding, and involvement in decision-making processes. The guidelines are applied to a particular case.

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  • Tervalon, Melanie, and Jann Murray-Garcia. 1998. Cultural humility vs. cultural competence: A critical distinction in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor and Underserved 9:117–125.

    DOI: 10.1353/hpu.2010.0233Save Citation »Export Citation »E-mail Citation »

    In contrast with the typical emphasis on cultural competence and understanding of differences, the authors suggest cultural humility, which incorporates a life-long commitment to self-evaluation and critique, to redressing power imbalances in physician–patient relationships and to building mutually beneficial nonpaternalistic and advocacy partnerships with communities and defined populations.

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  • Wiener, Lori, Denice Grady McConnell, Lauren Latella, and Erica Ludi. 2013. Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care 11:47–67.

    DOI: 10.1017/S1478951511001027Save Citation »Export Citation »E-mail Citation »

    Systematic review of thirty-seven studies. Themes include the role of culture in decision making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth-telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.

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Fear of Death/Death Anxiety

Although death anxiety/fear of death is a psychological rather than a communication variable, such anxiety influences communication toward the dying and among the dying. The study of death anxiety/fear begins in the general study of anxiety and is influenced by the many factors that influence anxiety more broadly. Just as trait anxiety is an individual difference variable, so is death anxiety. It is also argued that, despite the reality that death is a fact of life, it is probable that there has never been a human who has not at some time experienced the fear of death. There are several types of death fear. These include fear of the afterlife (punishment in hell, for instance); fear of the act of dying itself, including the pain suffering, suffocation, and loss of use of organs and limbs; and fear of extinction (or annihilation, or “ceasing to be”). The last type of fear is both the hardest to define and the most common type of fear. Whereas the first two are fears about death, the last is more simply fear of death. Death fear also differs in degree, ranging from death worry to death phobia. It is notable that less research has been conducted on the topic of death anxiety recently than was the case in the past, although that should not be interpreted to mean that fear of death has lessened. Indeed, the research indicates that death anxiety/fear is still rampant in many cultures, as indicated in Tsai, et al. 2005. There are some cultures, however, that have a more integrated experience with dying and death. The research discussed in this section looks at variables that impact death anxiety and the impacts of death anxiety. For instance, Barr and Cacciatore 2008 examines the impact of personal fear of death on grieving and how it is related to “a good death.” As reported in Routledge and Juhl 2010, death thoughts increase death anxiety but only for those who perceive little meaning in their lives. Interestingly, Bachner, et al. 2011 finds that religiously observant family caregivers of those who are terminal experience more distress and depression than do their secular counterparts; the religiously observant also discuss death less. Note, however, that there are inconsistencies in the research on the impact of religiosity on openness to death discussions.

  • Bachner, Yaacov G., Norm O’Rourke, and Sara Carmel. 2011. Fear of death, morality, communication, and psychological distress among secular and religiously observant family caregivers of terminal cancer patients. Death Studies 35:163–187.

    DOI: 10.1080/07481187.2010.535390Save Citation »Export Citation »E-mail Citation »

    In 236 family caregivers of terminally ill patients, retrospectively reports mortality communication was statistically greater among secular caregivers. Fear of death is a significant predictor of psychological distress among religiously observant caregivers of terminal cancer patients (i.e., fear of their own death as elicited by the caregiving role).

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  • Barr, Peter, and Joanne Cacciatore. 2008. Personal fear of death and grief in bereaved mothers. Death Studies 32:445–460.

    DOI: 10.1080/07481180801974752Save Citation »Export Citation »E-mail Citation »

    Looks at the relation of fear of death with maternal grief after loss of a child. Also examines fear of the unknown, of premature death, and of conscious death as they contribute to the variance in maternal grief. Fear of death in maternal grief seems to be the fear of personal extinction.

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  • Routledge, Clay, and Jacob Juhl. 2010. When death thoughts lead to death fears: Mortality salience increases death anxiety for individuals who lack meaning in life. Cognition and Emotion 24:848–854.

    DOI: 10.1080/02699930902847144Save Citation »Export Citation »E-mail Citation »

    Terror management theory argues that subtle reminders of mortality increase strivings for meaning; such strivings reflect efforts to prevent the anxiety that death reminders may otherwise cause. Experiment examined whether a mortality prime increased death anxiety and the relation of perceptions of meaning in life on this.

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  • Tsai, Jaw-Shiun, Chih-Hsun Wu, Tai-Yuan Chiu, Wen-Yu Hu, and Ching-Yu Chen. 2005. Fear of death and good death among the young and elderly with terminal cancers in Taiwan. Journal of Pain and Symptom Management 29:344–351.

    DOI: 10.1016/j.jpainsymman.2004.07.013Save Citation »Export Citation »E-mail Citation »

    Investigates relationship between death fear and the good-death scale especially after admittance to hospice; also examines age differences in death fear at two days before death and correlation between death fear and good death score at that point. Notable correlations and statistically significant differences are found.

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Avoidance of the Dying

Frequently referred to as social death or invisible suffering, avoidance is a not-unusual reaction toward dying individuals. It is notable that, like death anxiety, this concept is studied less in contemporary literature than it was in past decades; one might hope that the lack of much current research on the topic indicates that the issue is less of a problem than it used to be. Since the move to palliative team care and increased emphasis on and knowledge of hospice, it is indeed possible that the dying are less likely to be avoided. It is still apparent, however, that the discomfort that many people, including health-care providers, experience does not encourage them to seek out those they know are terminally ill. In this regard, Dzul-Church, et al. 2010 examines difficult events in approaches to illness. The other studies in this section indicate that even if the dying are not avoided, the topic of death is. This is confirmed in Braun, et al. 2010 and Osterlind, et al. 2011. Discussion of social death and invisible suffering sometimes include reports by terminally ill individuals of having “lived too long” and feeling the self disintegrate. From a social constructionist perspective, one may analyze the “making” and “unmaking” of the self as it relates to avoidance of the dying.

  • Braun, Michal, Dalya Gordon, and Beatrice Uziely. 2010. Associations between oncology nurses’ attitudes toward death and caring for dying patients. Oncology Nursing Forum 37:E43–E49.

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    Examines nurses attitudes toward the care of dying patients and how they correlated with death avoidance, fear of death, and approach acceptance of death. Looks at the mediating role of death avoidance between fear of death and attitudes toward caring for dying patients.

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  • Dzul-Church, Virginia, Jenica Cimino, Shelley Adler, Piera Wong, and Wendy Anderson. 2010. “I’m sitting here by myself . . .”: Experiences of patients with serious illness at an urban public hospital. Journal of Palliative Medicine 13:695–701.

    DOI: 10.1089/jpm.2009.0352Save Citation »Export Citation »E-mail Citation »

    Examines how difficult events shaped patients’ approaches to illness and how this influenced relationships and conceptualizations and concerns about death/dying. Also looks at social support; preferences for honest communication with providers; sharing in medical decision making; and fears of a prolonged dying process, pain, and feeling unwelcome in and dying in the hospital.

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  • Osterlind, Jane O., Rel Hansebo, Janicke Andersson, Britt-Marie Ternested, and Ingrid Hellstrom. 2011. A discourse of silence: Professional carers reasoning about death and dying in nursing homes. Ageing & Society 31:529–544.

    DOI: 10.1017/S0144686X10000905Save Citation »Export Citation »E-mail Citation »

    Using Foucauldian discourse analysis and focus groups of professional caregivers at nursing homes, three themes were identified: Death was silent and silenced, emotions were not allowed to emerge, and attention to death appears immediately after the death of an elderly individual. Avoidance conquered confrontation of death.

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Ongoing Bad News

Much of the writing on the topic of ongoing bad-news delivery (this phrasing indicating that bad-news delivery is not a one-time occurrence) is based on the understandings of very experienced health-care providers, although our focus in this bibliography is on empirically based work. The focus here is also on the communication of impending death (rather than death that has already occurred), as such seems to be especially difficult for the care providers responsible for such delivery. Openness in bad-news delivery is more common than it used to be; it is rare in Western countries that information is withheld from the patient. Several themes are apparent in the research that are outlined related to ongoing bad-news delivery; foremost amongst them is the difficulty of communicating bad news. After examination of the large body of data indicating this difficulty, some works attempt to ascertain the factors leading to this by focusing, for instance, on fear of loss of control. This is the emphasis of Friedrichsen and Milberg 2006. Several other articles present extensive summaries of guidelines for bad-news delivery; all of these are based on empirical research and intervention/training tests. Ngo-Metzger, et al. 2008 generates guidelines through summaries of the literature. Empathy and compassion are emphasized. Cultural differences/expectations are also noted and are especially evident in Kaufert, et al. 1999 and Malloy, et al. 2010; the latter also emphasizes the role of the nurse in the ongoing bad-news communication process. The most detailed contribution is Eggly, et al. 2006, which analyzes the communicative behavior of patients and family members receiving bad news, indicating their active role and the moderating impact of the provider–patient relationship. Armentrout and Cates 2011 provides guidelines for an especially difficult context: the death of a newborn.

  • Armentrout, Debra, and Leigh Ann Cates. 2011. Informing parents about the actual or impending death of their infant in a newborn intensive care unit. Journal of Perinatal and Neonatal Nursing 25:261–267.

    DOI: 10.1097/JPN.0b013e3182259943Save Citation »Export Citation »E-mail Citation »

    The loss of an infant is undoubtedly devastating to parents. How the information is communicated can either help provide support for the parent(s) or add to their grief. Compassion, warmth, touching, and honest/thoughtful communication are emphasized. Crying is acceptable. Simulation prior to actual experience may help prepare providers.

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  • Eggly, Susan, Louis A. Penner, Meredith Greene, et al. 2006. Information seeking during “bad news” oncology interactions: Question asking by patients and their companions. Social Science and Medicine 63:2974–2985.

    DOI: 10.1016/j.socscimed.2006.07.012Save Citation »Export Citation »E-mail Citation »

    Focuses on the behavior of patients in bad-news delivery. Detailed analysis of patients’ information-seeking indicates their active role. Patients with a positive relationship with the provider ask fewer questions. Companions asked more questions than patients, as did younger and more educated patients. Physician dominance leads to fewer questions.

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  • Friedrichsen, Maria, and Anna Milberg. 2006. Concerns about losing control when breaking bad news to terminally ill patients with cancer: Physicians’ perspective. Journal of Palliative Medicine 9:673–680.

    DOI: 10.1089/jpm.2006.9.673Save Citation »Export Citation »E-mail Citation »

    Explores why bad-news delivery is so difficult by examining physicians’ fear of losing control of emotions and of themselves. Loss of professionalism, confidence, and patient trust are also feared. Theoretical education in existentialism/spirituality and practice in palliative team care are recommended.

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  • Kaufert, Joseph M., Robert W. Putsch, and Margaret Lavellee. 1999. End-of-life decision making among Aboriginal Canadians: Interpretation, mediation, and discord in the communication of “bad news.” Journal of Palliative Care 15:31–38.

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    Contrasts physicians who emphasize biomedical values of autonomy with aboriginal families that may instead focus on communal solidarity. Interpreters may become involved in cultural mediation and patient advocacy. The tension between individual values of autonomy/openness and family desire to maintain hope became apparent in the case studies presented.

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  • Malloy, Pam, Rose Virani, Kathe Kelly, and Carla Munevar. 2010. Beyond bad news: Communication skills of nurses in palliative care. Journal of Hospice and Palliative Nursing 12:166–174.

    DOI: 10.1097/NJH.0b013e3181d99feeSave Citation »Export Citation »E-mail Citation »

    Goes beyond the initial communication of bad news typically delivered by physicians to examine the role of nurses in the process of ongoing bad-news communication. Examines nurses’ concerns relating to communication with physicians about bad-news delivery as well as spiritual and cultural concerns.

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  • Ngo-Metzger, Quyen, Kristin J. August, Malathi Srinivasan, Solomon Liao, and Frank L. Meyskens. 2008. End-of-life care: Guidelines for patient-centered communication. American Family Physician 77:167–174.

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    One of several thorough summaries of the literature to provide guidelines for health-care providers. Emphasizes prioritization of key points, assessing patient’s emotional readiness, recognition of the need for multiple communicative attempts, avoidance of false hope, consistency in messages across providers, sensitivity to culture, and early discussion of palliative team care.

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Prognosis

Although it is evident that accurate prognosis of impending terminality is difficult, it is equally difficult for health-care providers to discuss prognosis with patients. The stressfulness of such interaction is evidenced by Clayton, et al. 2005. Bradley, et al. 2001; Hancock, et al. 2007; and Heyland, et al. 2009 all report that prognostic communication is typically avoided, although physicians generally perceive that they have communicated more detailed prognoses than patients indicate. A recurring theme in the research, as evidenced in Hancock, et al. 2007, is the need for the health-care provider to ascertain patient and family understanding of the information, as providers also overestimate such comprehension. Parker, et al. 2007 confirms this information need. Communication of prognosis by the health-care provider and accurate understanding of such by families and patients is essential for fruitful end-of-living planning and discussions of preferences for treatment and future care. The lack of such helps explain why many more patients die in the hospital rather than their preferred home or hospice environment and receive unwanted treatment at end of life. Data indicate, however, that patients can be helped toward awareness and acceptance of impending terminality. Higher awareness is associated with numerous positive outcomes, including the lessened level of anxiety noted in Chan 2011. Gramling, et al. 2013 finds little discussion of preparation for end of life, and Jackson, et al. 2013 offers steps to guide such discussion.

  • Bradley, Elizabeth H., Anna G. Hallemeier, Terri R. Friend, et al. 2001. Documentation of discussions about prognosis with terminally ill patients. The American Journal of Medicine 111:218–223.

    DOI: 10.1016/S0002-9343(01)00798-7Save Citation »Export Citation »E-mail Citation »

    Analysis of the medical records of terminally ill patients examines prognostic discussion with terminally ill patients. Notes the percentage of these discussions in which both health providers and patients were present. Surveys discussions of time expected until death and desired treatment options, including CPR, and whether advance planning was likely based on the discussions.

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  • Chan, Wallace Chi Ho. 2011. Being aware of the prognosis: How does it relate to palliative care patients’ anxiety and communication difficulty with family members in the Hong Kong Chinese context? Journal of Palliative Medicine 14: 997–1004.

    DOI: 10.1089/jpm.2011.0099Save Citation »Export Citation »E-mail Citation »

    In light of the Chinese cultural belief that knowledge of impending terminality will negatively impact the life expectancy of a patient, clinical records of deceased Chinese cancer patients were examined. Data mining was utilized to note whether knowledge of prognosis was associated with anxiety and difficulty communicating with family members.

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  • Clayton, Josephine M., Phyllis N. Butow, McLin Psych, and Martin H. N. Tattersall. 2005. When and how to initiate discussion about prognosis and end-of-life issues with terminally ill patients. Journal of Pain and Symptom Management 32:132–144.

    DOI: 10.1016/j.jpainsymman.2005.02.014Save Citation »Export Citation »E-mail Citation »

    Focus groups and interviews with patients, caregivers, and health-care providers examined preferences for providers to offer all patients/families the opportunity to discuss the future, compared to the provider trying to estimate when the patient/family needs or is ready to hear the news. Clarifying patient/caregiver understanding was stressed by all.

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  • Gramling, Robert, Sally Norton, Susan Ladwig, et al. 2013. Latent classes of prognosis conversations in palliative care: A mixed-methods study. Journal of Palliative Medicine 16:653–660.

    DOI: 10.1089/jpm.2012.0381Save Citation »Export Citation »E-mail Citation »

    Audiorecording and coding of seventy-one palliative team “goals of care” interactions scrutinized the frequency with which preparing for end of life, facilitating new goals, and navigating options were discussed. Determined little emphasis on the most important issues for patients/families in terms of acceptance of terminality and planning for end of life.

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  • Hancock, Karen, Josephine M. Clayton, Sharon M. Parker, et al. 2007. Discrepant perceptions about end-of-life communication: A systematic review. Journal of Pain and Symptom Management 34:190–200.

    DOI: 10.1016/j.jpainsymman.2006.11.009Save Citation »Export Citation »E-mail Citation »

    Systematic review analyzes fifty-one studies on provider versus patient perceptions about communication of prognosis. Examines perceptual divergence and likelihood of providers underestimating patients’ information needs/desires and understanding of prognostic information. Concludes that providers need to check their own understanding of patient information needs and comprehension of prognosis.

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  • Heyland, Daren K., Diane E. Allan, Graeme Rocker, Peter Dodek, Deb Pichora, and Amiram Gafni. 2009. Discussing prognosis with patients and their families the near end of life: Impact on satisfaction with end-of-life care. Open Medicine 3:101–110.

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    Looks at family and patient of recall of a prognostic discussion with their care providers. Examines recollection of such a conversation as associated with satisfaction with overall care and with decision-making processes, as well as with levels of willingness to discuss advance planning.

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  • Jackson, Vicki A., Juliet Jacobsen, Joseph A. Greer, William F. Pirl, Jennifer S. Ternel, and Anthony L. Back. 2013. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. Journal of Palliative Medicine 16:894–900.

    DOI: 10.1089/jpm.2012.0547Save Citation »Export Citation »E-mail Citation »

    Based on a thorough discussion of the literature, six steps to facilitate prognostic awareness in patients are offered. They move from inquiry regarding how the patients feels he or she is doing, to asking what it would be like if he or she got sicker, to assessment of readiness/clinical urgency, to delivery/naming the dilemma.

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  • Parker, Sharon M., Josephine M. Clayton, Karen Hancock, et al. 2007. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. Journal of Pain and Symptom Management 38:81–93.

    DOI: 10.1016/j.jpainsymman.2006.09.035Save Citation »Export Citation »E-mail Citation »

    This review of forty-six studies on terminal patients and caregivers examines information needs about the illness itself, likely future symptoms and their management, life expectancy, and treatment options. Looks at differences between the providers and patients in these desires as the illness progresses. A trusted, empathic, and honest professional is the preferred communicator.

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Final Conversations

The term “final conversations” comes most directly from the work of Maureen Keeley, summarized in her book by that title with Julie Yingling (Keeley and Yingling 2007). However, other studies also relate to this topic and indicate the many important functions fulfilled by and content of these life-summarizing and death-preparation conversations. Keeley’s conceptualization of this notion referred most directly to those interactions in which an individual knows that he or she is dying; the conversations are part of preparing for death. The data on which Keeley relied were obtained primarily through retrospective interviews of the bereaved. These conversations are generally positive, if emotionally intense, cathartic experiences. Several of Keeley’s other works, such as the themes of final conversations, final conversations with children, and messages of love in final conversations, are summarized within Keeley and Yingling 2007 and are not presented here individually. As one approaches the study of this topic, however, it is important to keep in mind how rare earlier conversations about death are within most families and between patients and care providers. The many barriers to such conversations include uncertainty about end-of-life preferences, fear of death, family dynamics that discourage open communication, and assumptions that others will just know one’s preferences, whereas factors that facilitate discussion include prior experience with death, religiosity/spirituality (although research findings about these show some variability, in part determined by whether one anticipates a positive outcome after death), acceptance of the fact that death is inevitable, and a wish to lighten the burden on the family when a person does die. About a quarter of adults indicate that they are able to just comfortably and informally approach this discussion with family members. In most instances, conversations contain vague references to not wanting heroic measures or reliance on mechanical devices to maintain life. Even those with living wills have few conversations to reinforce those preferences with family members or care providers. Rarely are conversations about end of life desires routine, ongoing, and casual, as indicated in Anderson, et al. 2013. Prince-Paul and Exline 2010 reminds us that empathic, perspective-taking listening is useful for effective communication in any context, but it is essential at end of life. The goal of such communication must be to really understand the feelings of the dying individual as well as the surviving person. There are many times when survivors have important things to communicate to a dying loved one; if they do not talk about these issues in a final conversation, they will never have a chance to do so. Unresolved grief results when such communication is not allowed to occur, as identified in Clarke, et al. 2012. Scott 2014 reports the multiple goals that are inherent in such conversations and how those multiple goals may be fulfilled, and Hudson, et al. 2006 offers suggestions for responses to those who express a desire to die. Barton, et al. 2005 identifies the stages of final conversations.

  • Anderson, Wendy G., Susan Kools, and Audrey Lyndon. 2013. Dancing around death: Hospitalist–patient communication about serious illness. Qualitative Health Research 23:3–13.

    DOI: 10.1177/1049732312461728Save Citation »Export Citation »E-mail Citation »

    Analysis of audiotaped interactions between seriously ill patients and hospitalists indicated that acknowledgment of impending terminality was rare, occurring when patients cued for information and disclosed emotional distress if the hospitalist then explored the patient’s knowledge of the illness and that distress. Focus on acute issues led to less acknowledgment.

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  • Barton, Ellen, Matthew Eldridge, Thomas Trimble, and Justin Vidovic. 2005. Structure and variation in end-of-life discussions in the surgical intensive care unit. Communication & Medicine 2:3–20.

    DOI: 10.1515/come.2005.2.1.3Save Citation »Export Citation »E-mail Citation »

    Analysis of a corpus of six end-of-life discussions in a surgical ICU indicated four phases of discussion: the opening, description of the current status, holistic decision making, and the logistics of dying. It is during Phase II that information is presented that establishes the patient’s status as terminal.

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  • Clarke, Laura Hurd, Alexandra Korotchenko, and Andrea Bundon. 2012. “The calendar is just about up”: Older adults with multiple chronic conditions reflect on death and dying. Ageing & Society 32:1399–1417.

    DOI: 10.1017/S0144686X11001061Save Citation »Export Citation »E-mail Citation »

    Elderly individuals made unprompted comments on death, reflecting cognizance of the death of others around them and their own death. Hopes and fears focused on pain/suffering, institutionalization, and loss of cognitive skills and independence. Funerals and suicides were mentioned, but family members would not talk to them about death.

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  • Hudson, Peter L., Penelope Schofield, Brian Kelly, et al. 2006. Responding to desire to die statements from patients with advanced disease: Recommendations for health professionals. Palliative Medicine 20:703–710.

    DOI: 10.1177/0269216306071814Save Citation »Export Citation »E-mail Citation »

    Suggested responses to statements made by patients indicating a desire to die are offered. The suggestions are based on a systematic review of the literature as well as input from experts on the topic. Such statements may or may not actually reflect a desire to die.

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  • Keeley, Maureen P., and Julie M. Yingling. 2007. Final conversations: Helping the living and the dying talk to each other. Acton, MA: VanderWyk & Burnham.

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    Based on interviews with those who experienced conversations with others whom both parties knew were dying. The conversations were very emotional but cathartic and positive. Seven themes emerged, including expression of love, the importance of everyday talk, spirituality, nonverbal intimacy, challenging relationships, self-discovery, and a new life course.

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  • Prince-Paul, Maryjo, and Julie Exline. 2010. Personal relationships and communication messages at the end-of-life. Nursing Clinics of North America 45:449–462.

    DOI: 10.1016/j.cnur.2010.03.008Save Citation »Export Citation »E-mail Citation »

    Communication at end of life is an opportunity for messages of comfort rather than anger. The emphasis of such messages should be on relationships, including those with God, and sharing communication. Argues that scholars have not studied these issues, although the literature reviewed in this bibliography indicates that this assumption is questionable.

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  • Scott, Allison M. 2014. Communication about end-of-life health decisions. In Communication yearbook. Vol. 38. Edited by Elisia L. Cohen, 242–277. New York: Routledge.

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    Based on a multiple-goals perspective, Scott summarizes the research on family communication and provider–patient discussions about end of life to determine what leads to “good” conversations. As all conversations, especially those as complex as end of life communication, require the accomplishment of multiple goals, Scott’s findings are insightful and help reconcile competing research conclusions.

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Hope versus Openness at End of Life

Although life and relationships are full of dialectical tensions, many argue that the fundamental dialectical tension at the end of life is that between maintaining hope versus allowing open discussion of impending terminality. Van Gurp, et al. 2013 articulates this tension. Many people believe that talking about possible death takes away hope and makes a person more likely to give up and die. The data do indicate the value of hope in fighting illness but also indicate the value of open conversation about end of life rather than pretending that death is not approaching. Most dying individuals do know they are dying—it is generally their loved ones who are reluctant to accept impending terminality. Indeed, lack of open communication can be disconfirming to the terminal individual, as people “pretend” that the person is not going to die instead of respecting the person’s dignity. Delaying recognition of impending terminality leads to futile, painful treatments and higher levels of suffering, as argued in Sullivan 2003. Hope can instead be transformed into hope to survive to a certain event, or hope to die with dignity, or hope for less pain and suffering at end of life than most dying people experience if they continue with treatments that are highly unlikely to work. Clayton, et al. 2005 describes this continuum of hope. Emotional and practical support can be provided, as articulated in Clayton, et al. 2008. Davison and Simpson 2006 argues that realistic goals can be fulfilled. Palliative team care can begin at an earlier point, easing suffering. Curricula have been developed that focus on embracing hope. Scholars and practitioners encourage stepping outside the traditional box of hope and creating new boxes. This can include shifting the temporal dimension of hope—reminding patients that “you are still you.” Reframing hope is important, as Reinke, et al. 2011 describes. The articles itemized in this section indicate both how hope can be maintained and how openness can be enabled. Ayers 2007 focuses on like-minded thinking in this process, while Friedrichsen, et al. 2010 discusses different types of truth.

  • Ayers, Tressie A. Dutchyn. 2007. A partnership in like-minded thinking: Generating hopefulness in persons with cancer. Medicine, Health Care, and Philosophy 10:65–80.

    DOI: 10.1007/s11019-006-9015-5Save Citation »Export Citation »E-mail Citation »

    Focuses on helping laypeople communicate with others with cancer to maintain hopefulness. Offers a model to allow the building of a partnership with the ill individual, leading to what the author calls “like-minded thinking” (p. 65). It is argued that this state of like-mindedness helps maintain hopefulness and avoid despair.

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  • Clayton, Josephine M., Phyllis N. Butow, Robert M. Arnold, and Martin H. N. Tattersall. 2005. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer 103:1965–1975.

    DOI: 10.1002/cncr.21011Save Citation »Export Citation »E-mail Citation »

    Focus groups and interviews identified themes for coping while still nurturing hope: (1) emphasize what can be done (control of physical symptoms; emotional support, care, and dignity; practical support), (2) explore realistic goals, and (3) discuss day-to-day living. The broad spectrum of hope beyond cure is also discussed.

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  • Clayton, Josephine M., Karen Hancock, Sharon Parker, et al. 2008. Sustaining hope when communicating with terminally ill patients and their families: A systematic review. Psycho-Oncology 17:641–659.

    DOI: 10.1002/pon.1288Save Citation »Export Citation »E-mail Citation »

    Many patients are able to maintain hope despite acknowledging terminality. Patients and caregivers prefer honest and accurate information, provided with empathy and understanding. Providers need to recognize a spectrum of hope and help patients to cope by exploring and fostering realistic forms of hope that are meaningful for that patient.

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  • Davison, Sara N., and Christy Simpson. 2006. Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. British Medical Journal 333:886.

    DOI: 10.1136/bmj.38965.626250.55Save Citation »Export Citation »E-mail Citation »

    Patients’ hopes were highly individualized. Hope was central to advance care planning, impacting willingness to engage in end-of-life discussions. More information earlier in the illness empowered the patient and sustained ability to hope. Reliance on health professionals to initiate end-of-life discussions was a barrier to hope.

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  • Friedrichsen, Maria, Ann Lindholm, and Anna Milberg. 2010. Experiences of truth disclosure in terminally ill cancer patients in palliative home care. Journal of Pain and Symptom Management 39:982–992.

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    Patients identified three truths: the absolute objective truth, the partial truth, and the desired truth. Coping strategies were related to patients’ preferred mode of truth: facing the truth to take action, facing some parts of the truth to maintain hope, and hovering between facing and avoiding the truth.

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  • Reinke, Lynn F., Sarah E. Shannon, Ruth A. Engelberg, Jessica P. Young, and J. Randall Curtis. 2011. Supporting hope and prognostic information: Nurses’ perspectives on their role when patients have life-limiting prognoses. Palliative & Supportive Care 9:173–180.

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    Nurses support patients’ hopes by understanding individual aspects of these hopes, focusing on patient’s quality of life, and building trust with patients. Nurses provide prognostic information by assessing what the patient knows and following their lead. Nurses identify activities associated with the provision of prognostic information that required collaboration with physicians.

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  • Sullivan, Mark D. 2003. Hope and hopelessness at end-of-life. The American Journal of Geriatric Psychiatry 4:393–405.

    DOI: 10.1097/00019442-200307000-00002Save Citation »Export Citation »E-mail Citation »

    Improving end-of-life care is made difficult when false hope is maintained. End-of-life care needs to begin earlier than it typically does. Hopelessness is not lack of hope but attachment to a type of hope that is lost. Hope may instead be transformed to hope for comfort, dignity, intimacy, or salvation.

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  • Van Gurp, J., J. Hasselaar, E. van Leeuwen, P. Hoek, K. Vissers, and M. van Selm. 2013. Connecting with patients and instilling realism in an era of emerging communication possibilities: A review on palliative care communication heading to telecare practice. Patient Education and Counseling 93.3: 504–514.

    DOI: 10.1016/j.pec.2013.07.002Save Citation »Export Citation »E-mail Citation »

    This review includes seventy-one articles. Two communication genres in palliative team care proved to be dominant: the conversation to connect, about creating and maintaining a professional–patient/family relationship, and the conversation to instill realism, about telling a clinical truth without diminishing hope.

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Advance Directives

Advance directives are documents prepared by individuals prior to a potentially life-threatening situation that include, among other things, a living will that indicates the patients’ wishes for treatment regarding mechanical ventilation, dialysis, or nutritional/hydration assistance. Advance directives typically also include a medical or health-care power of attorney, giving the decision-making role to a particular individual, and may also include a DNR order. It is also possible to have a DNR order apart from the other aspects of an advance directive. A person can have a hospital-only DNR or a general DNR. Broader than just a document or series of documents, ACP also includes familial and/or provider discussions about a person’s priorities and beliefs that pertain to end of life. This may include the role of the family; funeral/memorial service planning; wishes regarding death in the hospital, hospice, or home; authority to revise advance directives; blood transfusions; organ/tissue/medical device donation; and how assets or benefits are to be used. Although Wenger, et al. 2001 finds that few patients have advance directives, Westphal and McKee 2009 finds that even fewer physicians actually read the advance directives. Black 2007 reports that social workers are more likely to read these. It is generally agreed that preparation of an advance directive should be encouraged, in that they provide some help in the event of patient incapacitation, but are limited in terms of applicability. There is also no assurance that anticipated wishes will correspond with actual desires when a situation occurs. There are individuals who, while they are healthy, feel that they would not want extraordinary efforts to keep them alive in the event of an accident if they were subsequently likely to be severely disabled, for instance. If such an event actually arrives, the patient sometimes feels differently, as Smith 2004 notes. By contrast, there are individuals who think they would want health-care providers to attempt any life-sustaining treatment that is available but who experience such pain and suffering at end of life that they instead prefer palliative team care exclusively and choose to prepare for death. Song 2004 finds that ACP leads to higher levels of satisfaction, and Waldrop and Meeker 2012 reports that ACP is essential for person-centered end-of-life care.

  • Black, Kathy. 2007. Health care professional’s death attitudes, experiences, and advance directive communication behavior. Death Studies 31:563–572.

    DOI: 10.1080/07481180701356993Save Citation »Export Citation »E-mail Citation »

    Builds on research looking at death fear/anxiety and escape versus avoidance of death in social workers, who approach discussion of advance directives differently than other health providers. Found negative correlations between collaboration with other providers and death anxiety/fear as well as escape avoidance of death; positive correlations with approach attitudes.

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  • Smith, Carolyn. 2004. False expectations? Expectations vs. probabilities of dying. Omega 41:157–185.

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    Ethnographic interview study of patients, including some from Hemlock Society, found a large list of end-of-life concerns, including pain, autonomy, capacity, and burden, but reluctance to initiate discussions with physician. When conversations occurred they focused on catastrophic illness and living wills, only a portion of advance directive concerns.

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  • Song, Mi-Kyung. 2004. Effects of end-of-life discussions on patients’ affective outcomes. Nursing Outlook 52:118–125.

    DOI: 10.1016/j.outlook.2003.10.014Save Citation »Export Citation »E-mail Citation »

    Systematic review finds that end-of-life discussions lead to patient satisfaction and to perceived satisfaction. Most occurred with fairly healthy elderly patients in outpatient care, were initiated by physicians, and were five to fifteen minutes long. Focuses on advance directives and life-sustaining treatment options. No negative effects of end-of-life discussions discovered.

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  • Waldrop, Deborah P., and Mary Ann Meeker. 2012. Communication and advanced care planning in palliative and end-of-life care. Nursing Outlook 60:363–369.

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    Focused literature review of advance directives, ACP, and communication in palliative team and end-of-life care. Little progress made in use of advanced directives in twenty years. Barriers to ACP identified; differences are based on locations, diagnosis, disease, race, and age. Effective ACP essential for person-centered end-of-life care.

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  • Wenger, Neil S., David E. Kanouse, Rebecca L. Collins, et al. 2001. End-of-life discussions and preferences among persons with HIV. Journal of the American Medical Association 285:2880–2887.

    DOI: 10.1001/jama.285.22.2880Save Citation »Export Citation »E-mail Citation »

    Half of an HIV+ sample discussed some issues related to end-of-life care with providers; 38 percent completed an advance directive. Completion was more likely after physician discussion. Fewer discussions with blacks, Latinos, men, and those without children or less education. More planning when less denial, greater trust in provider, and longer relationship.

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  • Westphal, Dan M., and Stefanie Andrea McKee. 2009. End-of-life decision making in the intensive care unit: Physician and nurse perspectives. American Journal of Medical Quality 24:222–228.

    DOI: 10.1177/1062860608330825Save Citation »Export Citation »E-mail Citation »

    Nurses are more likely than physicians to ask if there is a living will and to read it, but most physicians do consider it when making decisions. Physicians discuss DNR orders only when the prognosis is poor. Family dynamics and legal/ethical concerns influence whether these discussions occur.

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Surrogate Decision Makers

As referred to in the overview of the Advance Directives section, some individuals designate a particular individual as a surrogate decision maker in the event that the individual is unable to communicate his or her treatment wishes. This designation is accomplished through a medical/health power of attorney. As important as they are, Shalowitz, et al. 2006 finds limited accuracy in surrogate’s assessments.

  • Shalowitz, David I., Elizabeth Garrett-Mayer, and David Wendler. 2006. The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine 166:493–497.

    DOI: 10.1001/archinte.166.5.493Save Citation »Export Citation »E-mail Citation »

    Across 2,595 surrogate–patient pairs, only 68 percent accuracy of surrogate assessment of treatment preference was determined. Even patient-designated and next-of-kin surrogates were incorrect in one-third of cases. Data indicate concerns about reliance on surrogates and the need for study of other mechanisms on which to rely for decision making during incapacitation.

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Provider Issues

Several key provider-related issues must be considered within a discussion of dying and death concerns as they relate to communication. These focus on provider communication skills and the training to improve such skills. Within the field of communication, most research uses the term “competence” rather than “skills,” but we use the term “skills” here to be consistent with most of the literature published on the topic more broadly. Most of the research on skills focuses on provider skills, but it is also essential to mention that all communication is dyadic; to focus on how the provider communicates to the exclusion of the role of the patient and family in the interactive context is wholly inadequate. Nonetheless, researchers seem to assume that providers can be reached for communication training much more easily than can patients. Researchers have, thus, focused almost exclusively on assessment of provider skills and training programs designed to improve such. Within the broader area of health communication, notable researchers such as Don Cegala have done important work on training patients in communication skills, but this work has not focused on the end-of-life context. We do not include a separate section on patients, as most of the other research discussed within this bibliography focuses on patients. Additionally, it may appear troubling to try to “train” those who are dying regarding communication with providers. The same may be said of training family members of the dying. Communication training for nonproviders would have to begin well prior to a diagnosis of terminality; one would hope that the skills acquired might then extend into end-of-life applications. The research on provider skills is consistent in indicating inadequacy of both observed and perceived competencies among physicians in communicating with those who are terminally ill. Although training programs have some impact on these skills, the programs generally do not create enough improvement in competencies. Nurses are typically better than physicians at communicating with terminally ill patients and are more likely to recognize the importance of both skills and training to improve skills.

Skills

Boyle, et al. 2005 offers a program designed to address communication skills, as does Ngo-Metzger, et al. 2008. Slort, et al. 2011 uses qualitative data to identify barriers. Tsai 2010 focuses on skills particularly in relation to discussions of birth and death, finding a real lack of skill in care providers’ approach to death discussion.

  • Boyle, Diane K., Peggy A. Miller, and Sarah A. Forbes-Thompson. 2005. Communication and end-of-life care in the intensive care unit: Patient, family, and clinician outcomes. Critical Care Nursing 28:302–316.

    DOI: 10.1097/00002727-200510000-00002Save Citation »Export Citation »E-mail Citation »

    End-of-life communication is flawed and unsatisfactory for all parties, leading to conflict, anger, dissatisfaction, and unfulfilled wishes. The authors offer a program of family meetings, daily team consensus procedures, palliative care team case findings, and ethics consultation. This leads to earlier movement to palliative team care and higher levels of satisfaction.

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  • Ngo-Metzger, Quyen, Kristin J. August, Malathi Srinivasan, Solomon Liao, and Frank L. Meyskens Jr. 2008. End-of-life care: Guidelines for patient-centered communication. American Family Physician 77:167–174.

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    Skills when communicating bad news to patients include assessing the patient’s emotional state, readiness to engage in the discussion, level of understanding about the condition as well as how much information patients want. Must communicate prognosis accurately without giving false hope, coordinate with other doctors, and initiate palliative team care early.

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  • Slort, W., B. P. M. Schweitzer, A. H. Blankenstein, et al. 2011. Perceived barriers and facilitators for general practitioner–patient communication in palliative care: A systematic review. Palliative Medicine 25:613–629.

    DOI: 10.1177/0269216310395987Save Citation »Export Citation »E-mail Citation »

    Qualitative study. Facilitators were accessibility, taking time, commitment, and listening carefully. Patients want GPs to take the initiative to discuss end-of-life issues. Barriers were difficulty in dealing with former doctors’ delays and demands from patients’ relatives. Consultants report promises that could not be kept and insufficient anticipation of various scenarios.

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  • Tsai, Mei-Hui. 2010. Managing topics of birth and death in doctor–patient communication. Journal of Pragmatics 42:1350–1363.

    DOI: 10.1016/j.pragma.2009.09.012Save Citation »Export Citation »E-mail Citation »

    Although discourse on birth is introduced explicitly, talk about death is not. Death issues are instead introduced indirectly and implicitly. The face-threatening effects associated with death are balanced by posing an ambiguous question or phrasing questions based on assumptions that require the patient to then initiate the topic of death.

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Training

Several training programs focusing on skill development in care providers are noted. Wittenberg-Lyles, et al. 2008 provides an important conceptual assessment of training programs. Back, et al. 2007 offers a four-day residential workshop, whereas Sanchez-Reilly, et al. 2007 discusses an elective course on longer duration. Andrew and Taylor 2012 provides longitudinal data on the program the authors studied, and Johnson, et al. 2013 looks at whether or not training really made a difference. Turner, et al. 2010 argues that one size does not fit all in terms of communication skills training for care providers.

  • Andrew, Jane, and Cara Taylor. 2012. Follow-up evaluation of a course to develop effective communication and relationship skills for palliative care. International Journal of Palliative Nursing 18:457–463.

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    Longitudinal follow-up evaluation of interprofessional experiential course; used three focus groups. Themes were impact on practice, facilitating factors, hindering factors, and organizational issues. Organizations should consider the value they place on supporting interpersonal skills in end-of-life care; this can enhance the facilitating factors and mitigate hindering factors to ensure behavioral change.

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  • Back, Anthony L., Robert M. Arnold, Walter F. Baile, et al. 2007. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Archives of Internal Medicine 167:453–460.

    DOI: 10.1001/archinte.167.5.453Save Citation »Export Citation »E-mail Citation »

    A four-day residential workshop (Oncotalk) emphasizing skills practice in small groups. Interviews with standardized patients were audiorecorded before and after training and coded by blind coders. Improvements observed on bad-news delivery and transition skills. Post-training use of the word “cancer” increased significantly. Coders accurately identified interactions that were post-training.

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  • Johnson, L. A., C. Gorman, R. Morse, M. Firth, and S. Rushbrooke. 2013. Does communication skills training make a difference to patients’ experiences of consultations in oncology and palliative care services? European Journal of Cancer Care 22:202–209.

    DOI: 10.1111/ecc.12014Save Citation »Export Citation »E-mail Citation »

    Focuses on the impact of communication skills training on patient evaluations of provider behavior. Found no significant difference pre- and post-training in patient assessments using the Consultation and Relational Empathy Measure, although some improvement was observed with those with the lowest scores at baseline. Possible explanations proposed.

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  • Sanchez-Reilly, Sanddra, Elaine M. Wittenberg-Lyles, and Melinda M. Villagran. 2007. Using a pilot curriculum in geriatric palliative care to improve communication skills among medical students. American Journal of Hospice & Palliative Medicine 24:131–136.

    DOI: 10.1177/1049909106297071Save Citation »Export Citation »E-mail Citation »

    Looks at the impact of an elective geriatric palliative team care course. Increase in knowledge, but no significant changes in self-reported behaviors when applying communication strategies. Qualitative analysis showed improvement in empowering message strategies for breaking bad news. Evaluation of end-of-life curriculum must include behavioral assessment of end-of-life communication skills.

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  • Turner, Mary, Sheila Payne, and Terri O’Brien. 2010. Mandatory communication skills training for cancer and palliative care staff: Does one size fit all? European Journal of Oncology Nursing 15:398–403.

    DOI: 10.1016/j.ejon.2010.11.003Save Citation »Export Citation »E-mail Citation »

    Attitudes toward a mandatory training program in England for oncology physicians and nursing were assessed through a survey, with doctors demonstrating more negative attitudes toward the program and perceiving that such staff should already be skilled communicators. Nurses saw value in the program and rated their communication skills more highly than doctors.

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  • Wittenberg-Lyles, Elaine M., Joy Goldsmith, Sandra Sanchez-Reilly, and Sandra L. Ragan. 2008. Communicating a terminal prognosis in a palliative care setting: Deficiencies in current communication training protocols. Social Science and Medicine 66:2356–2365.

    DOI: 10.1016/j.socscimed.2008.01.042Save Citation »Export Citation »E-mail Citation »

    Current bad-news communication/training guidelines are based on contradictory conceptualizations. Communicating a terminal prognosis includes (1) adaptive communication based on the patient’s acceptability, (2) team-based/family communication as opposed to physician–patient dyadic communication, and (3) diffusion of topic through repetition and definition as opposed to singularity of topic.

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Nurses

Although much of the research that has been discussed in this bibliography is as relevant to nurses as it is to other health-care providers, there are a few studies that warrant an exclusive focus on nursing and issues of concern to nurses. Nurses experience particular moral dilemmas, generally have more intimate contact with patients, and need special resources for such interaction. Ferrell 2006, a study of moral distress, exemplifies this. Kozlowska and Doboszynska 2012 focuses on nurses’ nonverbal communication with patients, while Pirie 2012 articulates the role that nurses may play in palliative/supportive care.

  • Ferrell, Betty. 2006. Understanding the moral distress of nurses witnessing medically futile care. Oncology Nursing Forum 33:922–930.

    DOI: 10.1188/06.ONF.922-930Save Citation »Export Citation »E-mail Citation »

    Analysis of narratives about medically futile care as experienced by nurses. Key themes include conflict between aggressive care and palliative team care, code status, life support, and nutrition. Created strong emotional responses, including the need for patient advocacy and the perception that futile care was violent and cruel. Important spiritual/religious factors were cited.

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  • Kozlowska, Lena, and Anna Doboszynska. 2012. Nurses’ nonverbal methods of communicating with patients in the terminal phase. International Journal of Palliative Nursing 18:40–46.

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    Questionnaire given to nurses in Poland indicated heavy reliance on nonverbal communication with terminally ill patients, with the perception that touch is of most value to patients. No patient or outcome data were gathered. The nurses felt that they had inadequate training in communication skills relating to end of life.

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  • Pirie, Alison. 2012. Pediatric palliative care communication resources for the clinical nurse specialist. Clinical Nurse Specialist 26.4: 212–215.

    DOI: 10.1097/NUR.0b013e31825aeb97Save Citation »Export Citation »E-mail Citation »

    Citing the large number of children not receiving the palliative team care services they need and the lack of training for pediatric clinical nurse specialists, the article outlines relevant resource. Notes that the clinical nurse should provide holistic care, implement system changes, and use a communication framework.

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Ethics

The ethical issues relevant to dying and death underlie all the topics included in this bibliography. When a person considers whether to disclose to a child that he or she or a parent or sibling is dying, an ethical decision is being made. When the focus is on relative emphases on maintaining hope at end of life compared to allowing open communication about it (a contrast that is not an inherent tension, although it is seen by some as such), an ethical decision is being made. The area of palliative team care requires confrontation with all these ethical issues, as does bad-news delivery. Making decisions about prolonging and delaying death, even at the cost of more suffering, are obviously inherently ethical decisions, as discussed in White and Fitzpatrick 2006. Hinshaw 2008 notes that pain relief is also an ethical concern. More controversial are decisions related to euthanasia and physician-assisted suicide. Defining a “good death” and issues of allowing denial are also ethical concerns. There are times when there is collusion between the doctor and the patient to prevent the family from knowing about the patient’s impending death, and there are times when there is collusion between the doctor and the family to prevent the patient from such knowledge. Ethical frameworks that are relevant to an understanding of this area include utilitarianism, deontology, principalist medical ethics (focusing on respect for autonomy, beneficence, nonmaleficence, and justice), and virtue ethics, as discussed in Jeffrey 2006. The writing in this area is rather consistent, frequently bringing these ethical issues to the attention of health-care providers who might not have received much training in ethics but whose work requires an awareness of the concepts. Daugherty 2004 summarizes many of these issues.

  • Daugherty, Christopher K. 2004. Examining ethical dilemmas as obstacles to hospice and palliative care for advanced cancer patients. Cancer Investigation 22:123–131.

    DOI: 10.1081/CNV-120027587Save Citation »Export Citation »E-mail Citation »

    Geared toward oncologists, the following dilemmas are identified: prognosis determination/communication, communicating a terminal prognosis while allowing patients and families to maintain hope, conflicts of interests for clinicians, and problems of the reimbursement mechanisms for hospice, which may be inadequate to meet the needs of all dying cancer patients.

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  • Hinshaw, Daniel B. 2008. Pain relief and palliative care in Lebanon: Ethical issues in end-of-life care. Lebanese Medical Journal 56:122–128.

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    Noting that medical advances may prolong suffering and the dying process rather than bringing healing and recovery, four now common ethical principles are offered: the Hippocratic principles of nonmaleficence (do no harm) and beneficence and the more recently developed concepts of patient autonomy/independence (in contrast to paternalism) and justice/fairness.

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  • Jeffrey, David. 2006. Patient-centred ethics and communication at the end-of-life. Seattle, WA: Radcliffe.

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    A thorough but easy-to-read overview of ethics and communication at end of life, geared toward practitioners. Includes case studies and most of the key topics noted in the introduction to this section. Especially useful discussion of virtue ethics, which is oft-neglected in the literature. Appropriate for all levels of health-care provision.

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  • White, Y., and G. Fitzpatrick. 2006. Dialysis: Prolonging life or prolonging dying? Ethical, legal, and professional considerations for end-of-life decision making. Journal of Renal Care 32:98–103.

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    Decisions to discontinue dialysis are made by patients because of unacceptable quality of life, depression, and chronic failure to thrive. Fear of dying, pain, suffering, and abandonment may create barriers to these decisions. Providers should provide information with honesty to allow patients to predict their quality of life and death.

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