Death is considered a taboo topic in most cultures. The lack of willingness to talk about the issue reflects discomfort with the subject and attempts to deny the reality of death. Instead of talking openly about death, most people use euphemisms and metaphors to maintain distance from it. This communicative avoidance then defines death as an even more taboo issue. The topic of death was not even studied extensively by scholars until the 1970s.
Death anxiety affects both terminally ill individuals and those who interact with them. The fear of death can stem from thinking about one’s own end and about the uncertainty of what lies beyond death – the unknown and unknowable. Being afraid of death can contribute to anxiety about aging; however, experiencing the deaths of others may help to lessen an individual’s fear of death, especially when the dying person and those around him or her accept and cope with death directly. While initially causing a heightening of fear, death education reduces denial, allows for expression and discussion of fears, lessens anxiety, and eventually leads to greater comfort for health-care providers who deal regularly with dying people (Servaty & Hayslip 1997). Death anxiety is also reduced by having a relationship with a higher power.
People who are facing impending death need as much information as possible, whether positive or negative (Jenkins et al. 2001). Knowing allows hope, while not knowing allows the imagination to create scenarios often worse than reality. In cancer patients, less than honest information results in anxiety and adjustment disorders. In patients with inoperable tumors, lack of honest communication has been found to cause very high levels of drug use, anxiety, and depression. Accurate information allows people to be more actively involved in decision-making about their treatment, although some patients do prefer a more passive role.
Most dying people want to talk openly with their loved ones, friends, and caregivers about their death (Servaty & Hayslip 1997). Talking about death helps people deal with it and the emotions it causes in them. Those communicating with someone who is dying do best to listen as the person talks about his or her life, tries to make sense of it, and brings it to a close.
Health-care providers should talk with patients and/or their relatives to determine the level of awareness of the person’s condition and its likely results (especially if it is a fatal diagnosis) and then gently confirm the bad news. Most patients (and their families) want to know if death is imminent (Seale 1991), although some may feel that loved ones or friends might not be able to handle such information. Patients who are not told the truth about their prognoses, yet perceive it from verbal and nonverbal messages that are disparate from information they have been told, are placed in a difficult double-bind and cannot properly deal with the impending death. People want to know they are dying so they can say goodbye to family and friends, maintain a sense of dignity, and secure God’s forgiveness for their mistakes.
Denial can exist at the same time as an awareness of impending death. Some people report not remembering that they had been told of their fatal diagnosis, even when it had been clearly explained to them previously. Denial can help people deal with fear, can help them cope with the coming of death, and can protect interpersonal interactions that the nearness of death could diminish or extinguish (Beilin 1981–1982).
For the most part, interactions with those who are terminally ill are characterized by social distance and social death – treating people as if they are already dead. Reluctance to interact with the dying reflects both the death anxiety noted above and perceptions of a lack of knowledge about how to interact with someone who is dying – a lack of a response repertoire for dealing with the terminally ill. Negative attitudes toward death and dying also lead to less aggressive medical treatment for terminal patients, especially if the patients are older or of lower social status (Timmermans 1998). In addition to differential treatment from health-care providers, the terminally ill are also treated differently by their friends and families than are nonterminal patients. Family members and friends experience anticipatory grief prior to death; while it may make bereavement easier, this also leads to increased social distancing and social death prior to demise. It can rupture already fragile social bonds. Some research has shown that only a third of spouses openly discuss impending death, and another third discuss it in a limited fashion. The last third do not discuss it at all. Open communication from health-care providers, however, does positively impact openness of family communication. More open communication prior to death facilitates the grieving process after death.
Uncertainty about how to communicate with the dying is based on the assumption that there is a correct way to interact in this situation, when the research demonstrates that there is no correct way to communicate with the dying. There is nothing that can be done to make terminality more acceptable. The most effective interaction is that which just communicates caring and presence – that the other person is there for the dying or bereaved individual. There are no magic words that can be used to make the situation better.
Research in this area has also examined bad news delivery from health-care providers. In general, providers receive very little and wholly inadequate training in this area. Bad news delivery is relevant in terms of the announcement of impending terminality in those cases where it can be anticipated and the indication to family and friends that a loved one has died. The anxiety and uncertainty experienced by care providers typically leads them to overwhelm the terminal patient with information when announcing the diagnosis rather than providing the empathy that is more appropriate in such a context. Patients cannot process high levels of information when they are trying to comprehend terrible news. When making the death announcement to family members, care providers generally do not communicate the sympathy that is needed. Law enforcement personnel and physicians are less effective at such announcements than are nurses, whose training emphasizes more interpersonal sensitivity.
References:
- Beilin, R. (1981–1982). Social functions of denial of death. Omega, 12, 25 – 35.
- Coffman, S. L., & Coffman, V. T. (1993). Communication training for hospice volunteers. Omega, 27, 155 –163.
- Fieweger, M., & Smilowitz, M. (1984). Relational conclusion through interaction with the dying. Omega, 15, 161–172.
- Jenkins, V., Fallowfield, L., & Saul, J. (2001). Information needs of patients with cancer: Results from a large study in UK cancer centers. British Journal of Cancer, 84(1), 48 –51.
- Seale, C. (1991). Communication and awareness of death: A study of a random sample of dying people. Social Science and Medicine, 32, 943 – 952.
- Servaty, H. L., & Hayslip, B., Jr. (1997). Death education and communication apprehension regarding dying persons. Omega, 34, 139 –148.
- Sudnow, D. (1967). Passing on. Englewood Cliffs, NJ: Prentice Hall.
- Timmermans, S. (1998). Social death as self-fulfilling prophecy: David Sudnow’s “Passing on” revisited. Sociological Quarterly, 39, 452 – 472.
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