Communication with the Dying
Communication with the Dying
Interpersonal communication regarding death, dying, and bereavement has become an increasingly important area in the field of thanatology, wherein research has addressed the critical role of open family communication in facilitating the positive processing of a death loss. In the 1990s, attention started to be given to communicative issues with reference to dying individuals, especially with regard to the need for improved communication between dying persons and their families, their physicians, and their nurses.
For many people, the thought of dying evokes as much or more fear and apprehension as does the thought of death itself. Consequently, discussing the dying process, as well as thinking about how one's last days, weeks, and months might be spent, can be very beneficial. Otherwise, the process of dying becomes a forbidden topic. It is in this context of fear, apprehension, and denial that dying persons are often viewed as persons whom one might feel sorry for, yet as individuals whose very presence makes caretakers and family members feel uneasy and whose feelings, attitudes, and behaviors are hard to relate to. In this light, it is not surprising that Sherwin Nuland wrote the best-selling How We Die (1993) to "demystify" the dying process.
Coincidentally, a focus on relief of symptoms and increased attention to the patient's and family's conception of a good quality of life has emerged in medical care, particularly in the context of life-threatening illness. For example, in "The Quest to Die with Dignity," a 1997 report published by American Health Decisions, a nonprofit group, people not only reported fears of dying "hooked to machines," but also did not feel that the health care system supported their conception of a "good death," that is, a "natural" death in familiar surroundings. Such findings were based on 36 focus groups totaling nearly 400 people.
Furthermore, a study commissioned by Americans for Better Care of the Dying reported that most Americans view death as "awful," and that dying persons are often avoided and stigmatized because of their condition. In 1987 the researchers Peter Northouse and Laurel Northouse found that 61 percent of healthy individuals stated that they would avoid cancer patients, and 52 percent of dying persons believed that others generally avoided them. Significantly, the project SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks for Treatment), which studied 9,000 patients with life-threatening illnesses in five teaching hospitals over a two-year period, reflects the difficulties patients have in communicating with their physicians at the end of life, where such persons' wishes regarding end-of-life care were largely ignored. Indeed, efforts to improve communication by educating physicians were not successful.
Why People Have Difficulty Communicating with Dying Persons
Researchers have suggested several reasons for the difficulty many individuals have in communicating with dying persons: not wanting to face the reality of one's own death, not having the time to become involved, and not feeling emotionally able to handle the intensity of the situation. For some people, the grief that they experience in anticipation of a loved one's death may help to explain their difficulty in interacting with terminally ill individuals. For others, dying may have "gone on too long," and thus the dying person experiences the pain of being isolated from those whose love he or she needs most. Likewise, loved ones' beliefs about whether they could have somehow prevented the death or not may evoke more guilt in such persons, causing them to avoid interacting with a dying loved one.
Uneasiness in being with the dying can manifest itself via outright avoidance, or in difficulty in speaking or maintaining eye contact with such persons. It can also be expressed in maintaining a physical distance, uneasiness about touching the dying person, or an inability or unwillingness to listen. This may result in overconcern, hyperactivity, or manipulative, impersonal behavior (e.g., "Aren't we looking good today!"), or changing the subject. Significantly, this uneasiness is likely to be perceived by those who are already sensitive to being rejected because they are dying.
Efforts to measure fears about interacting with dying persons have been reflected in the Communication Apprehension Regarding the Dying Scale (CA-Dying), which operationalizes apprehension related to such communicative issues as talking to and making eye contact with a dying individual and the level of perceived closeness to this person. CA-Dying is independent of general communication apprehension, and positively related to overt fears regarding one's own death and another's dying, while negatively related to death acceptance and covert death fear. In 1986 and 1987, the creator of this scale, the psychologist Bert Hayslip, found that scores on the CA-Dying scale decreased among a group of hospice volunteers enrolled in a training program relative to age-matched controls. In this respect, age relates negatively to CA-Dying scores, most likely due to increased death experience. Such apprehension does not vary with the nature of the dying person's illness; it is universal.
Characteristics of dying individuals also may affect one's apprehension about communicating with such persons. Because pain frequently accompanies terminal illness, its presence often affects simple communication. Such pain often preoccupies dying individuals' thoughts and may contribute to, along with intense emotional conflict and the effects of medication, an increase in contradictory messages between the individual and others. In addition, those dying violate several of the social standards in place in American society: They are often nonproductive, unattractive, not in control of themselves and of their life situation, and provoke anxiety in others.
Not all dying people are alike. Thus, some may evoke more avoidance than others, depending upon whether their death is expected or not, what they are dying of, where they die, and whether their deaths are seen as "on-time" (i.e., the death of an older person), or "off-time" (i.e., the death of a child, adolescent, or young adult). Additionally, some dying individuals are more able to deal with everyday demands than are others, and some prefer to talk or remain silent on matters related to death. Some individuals have more support from friends and families than do others, and some are more tolerant of pain. Some are more willing to communicate their awareness of dying than other dying individuals, and others are more able to discuss what it is they need in order to die peacefully.
Important Steps in Communicating with Dying Persons
For those dying and their families, the prospect of their own or a loved one's imminent death can be a terrifying experience. Indeed, dying produces anxiety, leading to both dependence upon other people and defensiveness based upon fears of rejection. Consequently, being able to communicate honestly about the quality or length of one's life, the disease process, and one's feelings about loved family members or friends is of utmost importance. This communication (both verbal and nonverbal) is two-way—each individual is both giving and searching for cues about each person's acceptability to the other. Because preconceptions as "dying person," "hospice patient," or "caregiver" (professional or otherwise) govern or limit what aspects a person reveals about him- or herself, being open, genuine, empathic, and understanding allows this two-way dynamic to evolve beyond these "labels."
The benefits of open communication are clear. Relationships that allow for communication about death often precede healthy adjustment. Researchers have found that the emotional impact of being labeled as "dying" is directly related to quality and openness of the communication between the dying individual and others, wherein if open communication is not achieved caregivers operate on preconceptions rather than the dying individual's actual thoughts and feelings.
Communicative Difficulties among Health Care Professionals
It could be argued that those persons whose attitudes and actions most influence the quality of end-of-life care are physicians, principally because they have primary control of the information that drives medical decision making. Furthermore, both patients and physicians agree that physicians have the responsibility to initiate discussions regarding advance directives and the use of life-sustaining medical intervention.
Many have noted the difficulty physicians experience in communicating with the dying and their families. For example, in 1977 the researcher Miriam Gluck suggested that physicians may fear emotional involvement, feel a loss of what to say, or lack knowledge about what the patient has been told. Often physicians may feel that terminal patients are medical "failures," are preoccupied with medical equipment and technical skills, fear the patient's anger, or fear that the patient will die.
Physicians, for the most part, seem to view death as the ultimate enemy, and many medical practitioners, when called upon to provide patient-centered palliative care, feel ill prepared. Personal and professional anxiety and occasionally even defensiveness often result. These responses often lead to missed opportunities for the patient, family, and the physician to share in a peaceful, natural rite of passage. The discomfort felt by the physician in broaching the topic of advance directives may well to lead to outcomes not desired by the patient, such as unwanted continuation of life-sustaining medical treatment.
Discomfort in broaching the topic of advance directives, death, and symptom control may stem from a lack of confidence in providing palliative care or lack of understanding regarding the ethical and legal aspects of end-of-life decision making. Reluctance to discuss end-of-life issues with patients may also be caused by a fear of damaging their hope, a perception that the role of the physician is only to heal and preserve life, and feeling that such discussions should only occur in the context of an intimate relationship with the patient and family. Although physicians vary in the extent to which they are able to discuss sensitive end-of-life issues, such as the diagnosis or prognosis of a terminal illness, physicians' attitudes toward the care of the terminally ill, including the willingness to communicate about the end of life, are critical to ensuring an improved death for the majority of Americans who prefer to die "naturally."
In 1971 the researcher Samuel Klagsbrun found that, for nurses, fear of death to a certain extent affected responses to situations requiring interaction with the dying patient. Specifically, a higher fear of others' dying was related to increased uneasiness in talking about dying with the patient where the nurse did not have a "specific task" to perform. In addition, finding a terminally ill patient crying was also related to a high fear of others' dying. In cases where "appropriate behavior" was ill defined in caring for a dying patient, simple denial was used to cut short the interaction.
What Is Special about Communicating with Dying Persons?
Loma Feigenberg and Edwin Shneidman have discussed four types of interactions with persons who are dying, which include (1) ordinary conversation, (2) hierarchical exchanges, (3) psychotherapy, and (4) thanatological exchanges. While ordinary conversation indicates that two individuals of equal status are talking about what is actually being said (e.g., the weather, sports, news items), hierarchical exchanges involve conversations between persons of unequal status, where one is more powerful or perceptually superior to the other (e.g., supervisorsubordinate, officer-enlisted man, oncologist-patient). Roles cannot be exchanged; that is, the patient cannot examine the oncologist. Clearly, hierarchical exchanges undermine genuine communication with dying persons. Psychotherapy focuses on feelings, emotional content, and the latent (unconscious) meaning of what is said, where the patient invests the therapist with magical powers or projects powerful emotions or qualities onto the therapist. As with hierarchical exchange, in psychotherapy therapist and patient are not equals. In thanatological exchanges, while participants are perceived as equals (as in ordinary conversations), thanatological interactions between persons are unique.
Dying is a distinctly interpersonal event involving a helping person and the dying patient; this "other" person may be a friend, neighbor, hospice volunteer, counselor, one's husband, wife, or one's child. Consequently, ordinary conversations with dying persons may be very "therapeutic" and, in fact, reflect many elements that are typical of formal psychotherapy, including active listening.
Active listening assumes the individuality of each dying person's needs, and stresses what is communicated both verbally and nonverbally. One's presence as well as questions that are asked say, "I am trying to understand how you feel." Reassurance and providing nonjudgmental support are critical. Moreover, using the dying person's name throughout the conversation, making eye contact, holding the person's hand, placing one's hand on a shoulder or arm, smiling, gesturing, and leaning forward all communicate genuine interest and caring in what the person is saying (or not saying) and feeling. Asking specific questions such as, "Can you help me understand?" as well as open-ended questions such as, "What is it that you need to do now?" are very important, as is being comfortable with silence.
Effective communication with dying people reflects comfort with one's own discomfort, to "do nothing more than sit quietly together in silence" (Corr, Nabe, and Corr 2000, p. 178). Indeed, communicating involves as much listening as it does talking and doing. Building good communication and listening skills, touching and maintaining eye contact, and projecting a genuine sense of empathy all give the message, "I am here to help and support you. I care about how you are feeling." In short, effective, empathic, and timely communication is embodied in the statement, "Be a friend."
Being attuned to verbal and nonverbal signals that the person wants to talk give permission to share. Providing the opportunity to expand on what the person has said by repeating what has been stated, using the person's own words, opens up communication, as does disclosing one's own thoughts and feelings. Such disclosure can help the individual talk about his or her own feelings. Doing this with others' needs in mind, not one's own, is very important.
In understanding dying people's needs, it is important to realize that different illnesses and illnesses in various stages of progression create different "dying trajectories" that make different physical, psychological, and psychosocial demands on those dying and their families. For example, the dying person may initially search for information regarding insurance coverage, the nature of the illness and its progression, treatment, or what the family can do to help to care for him or her. He or she may want to know about the side effects of pain-relieving medications. As the condition worsens, more intimate needs for reassurance and support may surface, and concerns about funeral planning, wills, or life without a loved one may be expressed. Near death, people may be less expressive about what they need, and emotional support may be all that they require. Rather than "doing" something, the caring persons may meet this need by simply "being there."
Dying people's and their families' feelings of being overwhelmed or of feeling vulnerable directly affect their behavior and willingness to talk. What passes for open, friendly conversation one day can change suddenly. One may be angrily rebuffed, rejected, or totally ignored because the person is in pain or because the person has had a fight with a child or spouse. The individual who is more aware of his or her disease and its impact on future relationships and plans may be more angry or depressed than usual; communication may cease altogether or be severely curtailed. No appreciation for time spent or help given (however unselfishly) may be expressed. On other days, this same person may be very open or psychologically dependent on the professional caregiver. Fears, hopes, or secrets may be willingly shared. Such fluctuations are to be expected and are characteristic of the "ups and downs" of the dying process. One must be attentive to not only the dying individual's words, but what words and actions may symbolize.
Critical to understanding dying persons' concerns is understanding both the patient's and the family's needs in a variety of areas. These needs cut across many domains—physical (pain control); psychosocial (maintaining close relationships with others); spiritual (integrating or resolving spiritual beliefs); financial (overcoming the costs of medical or hospice care, having adequate funds to cover other financial obligations unrelated to care); and psychological (knowing about the illness and its course over time, talking over emotional difficulties, knowing that one's family is informed about the illness and that family members will be cared for well). Attending to as many of these needs as one can contributes to both the patient's and family's quality of life.
See also: Dying, Process of; Good Death, The; Lessons from the Dying; Symptoms and Symptom Management
American Health Care Decisions. The Quest to Die with Dignity: An Analysis of Americans' Values, Opinions, and Values Concerning End-of-Life Care. Appleton, WI: Author, 1997.
Baider, Lea. "The Silent Message: Communication in a Family with a Dying Patient." Journal of Marriage and Family Counseling 3, no. 3 (1977):23–28.
Bugen, Lawrence. Death and Dying: Theory, Research, and Practice. Dubuque, IA: William C. Brown, 1979.
Cohn, Felicia, and John H. Forlini. The Advocate's Guide to Better End-of-Life Care: Physician-Assisted Suicide and Other Important Issues. Washington, DC: Center to Improve the Care of the Dying, 1997.
Corr, Charles, Kenneth J. Doka, and Robert Kastenbaum. "Dying and Its Interpreters: A Review of Selected Literature and Some Comments on the State of the Field." Omega: The Journal of Death and Dying 39 (1999):239–261.
Corr, Charles, Clyde Nabe, and Donna Corr. Death and Dying: Life and Living. Pacific Grove, CA: Brooks/Cole, 2000.
Dickenson, Donna, and Malcolm Johnson. Death, Dying, and Bereavement. London: Sage, 1996.
Epley, Rita J., and Charles H. McCaghy. "The Stigma of Dying: Attitudes toward the Terminally Ill." Omega: The Journal of Death and Dying 8 (1977–78):379–393.
Feigenberg, Loma, and Edwin Shneidman. "Clinical Thantology and Psychotherapy: Some Reflections on Caring for the Dying Person." Omega: The Journal of Death and Dying 10 (1979):1–8.
Glaser, Barney G., and Anselm L. Strauss. Awareness of Dying. Chicago: Aldine, 1965.
Gluck, Miriam. "Overcoming Stresses in Communication with the Fatally Ill." Military Medicine 142 (1977):926–928.
Hayslip, Bert. "The Measurement of Communication Apprehension Regarding the Terminally Ill." Omega: The Journal of Death and Dying 17 (1986–87):251–262.
Kastenbaum, Robert. Death, Society, and Human Experience, 7th edition. Boston: Allyn and Bacon, 2001.
Klagsbrun, Samuel C. "Communications in the Treatment of Cancer." American Journal of Nursing 71 (1971):948–949.
Lynn, Joanne, et al. "Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients." Annals of Internal Medicine 126 (1997):97–126.
Marrone, Robert. Death, Mourning, and Caring. Pacific Grove, CA: Brooks Cole, 1997.
Northouse, Peter G., and Laura L. Northouse. "Communication and Cancer: Issues Confronting Patients, Health Professionals, and Family Members." Journal of Psychosocial Oncology 5 (1987):17–46.
Nurland, Sherwin B. How We Die. New York: Vintage, 1993.
Rando, Terese A. Grief, Death and Dying. Champaign, IL: Research Press Company, 1984.
SUPPORT. "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients." Journal of the American Medical Association 274 (1995):1591–1599.
Trent, Curtis, J. C. Glass, and Ann Y. McGee. "The Impact of a Workshop on Death and Dying on Death Anxiety, Life Satisfaction, and Locus of Control Among Middle-Aged and Older Adults." Death Education 5 (1981):157–173.
BERT HAYSLIP JR.