Identification of the Problem: Denial and Subsequent Lack of Communication of the Impending Death
Death is a natural phenomenon and has been there since the existence of mankind. In the past, people used to accept the death or impending death of a loved one easily because they knew that there was little that they could do about it. However, with the advancement in health care, when more and more cures and treatments of diseases have been found out, people have started denying the fact of death, which is inevitable. Attitude of medical personnel towards a dying patient has also changed. Not dealing face-to-face with the terminal patient, incongruities and discord between verbal and non-verbal communication and loss of affective empathy with the risk of therapeutic negligence, worsening the conditions of death. There are many costs involved with the denial of impending death for the patient himself and his family. This paper discusses the issues involved with the denial of death of a patient and the interventions a student can bring about which can change and solve the problems which are caused by the denial.
The concept of death has been there since the beginning of time and yet when humans get to know that they themselves or their loved one is impending death they fear it and go into a phase of denial. With the passage of time the evolution of the concept of death has taken place and it has taken a form of a very complicated and dynamic system which involves biological, psychological, social, spiritual, and cultural components.
When physicians and especially family members know that the patient will die and keep the secret, create a barrier that prevents the patient and family prepare for death. Lack of communication isolates the sick, left alone when the patient needs others, and the patient dies socially before the physical death. Given this attitude of family and medical staff, the patient withdraws and suffers alone. Many doctors who are not in the favor open communication are afraid of risk of suicide by the patient. Careful studies have been conducted that have shown a slightly higher incidence of suicide in terminally ill patients, but that is not related to the communication of the diagnosis but physical suffering.
Most of the times the family is also in a state of denial and behind this denial is the fear of having to deal with pending family conflicts, fear of not being able to tolerate the emotional exchange or guilt upon communicating the terminal illness or impending death to the patient. But what happens to the person who knows he will die? Kubler-Ross, (2009) based on the experience of spending thousands of hours with patients who were facing death, described the psychological reactions, which take place as phases of a process, with the knowledge that the person is soon going to die. The progression of these phases would be: shock and denial of death, anger, "bargaining" or attempted bargaining, depression and acceptance. Everyone does not necessarily pass through all the stages, but anyone who has faced death experiences at least one or more of these phases.
Shock and Denial: the confrontation with the threat of death causes restlessness and anxiety, can lead to temporary paralysis of the activities and disorientation, then the person starts working again, closing his eyes his threatening reality. According to Kubler-Ross, (2009) a period of denial is necessary to give the time to the patient and his family to find ways to face the terrible truth. The role of the physician, after establishing a "therapeutic alliance" with his patient, will be to go slowly guiding the patient. The role of the family has a great significance in supporting the patient.
Prevalence Of Denial Of Patient's Impending Death In Today's Healthcare System
In U.S. there are dozens of groups of volunteers who assist the dying. In Chile there are groups of psychiatrists have been interested in the issue and are working with terminally ill patients. But for this evolution is constant communication between the patient and doctor and between the patient and their families is required. In a study in 2008 in America, 200 physicians were asked whether they were supporters of informing patients of terminal cancer: 88% said no but that he would tell a family member. However 60% of these doctors wanted to be informed the truth if they had a similar cancer diagnosis. In fact, in most cases there is no dichotomy between "tell all" and "hide the truth" (Tomer, Eliason, Wong, 2008).
Recent studies conducted in various parts of U.S. have shown that 90% of terminally ill patients are not informed by the doctor about their disease. According to research most patients, having leukemia, cancer, AIDS etc. want to be informed about their diagnosis, treatment and possible recovery (Hegedus, Zana, Szabo, 2008). It should also be true for family members who maintain good communication with the patient may be really close to him in his last moments. In this way the family is also given the opportunity to express their emotions and take practical measures to the imminent departure.
Research in U.S. has allowed classifying the denial to the terminally ill in 5 main types: avoidance, disclaimer, and escape to hyperactivity, paternalistic attitude and resignation (Luthy, Cedraschi, Pautex, Rentsch, Piguet, Allaz, 2009)
Avoidance: evasive behavior, like not talking about certain issues, shunning the diagnosis, hide test results, are examples of such attitudes in most cases are noticed by the patient but has no chance to speak.
Disclaimer: means a blind eye to a troubling reality. Many times there is a joint denial of patient and staff. This attitude of denial has been explained by the formation of health personnel who are trained to improve and heal and feel the death of a patient as a failure.
Escape: here the doctor does not tolerate the feeling of hopelessness of imminent death and indicates either review and progressively more aggressive treatment may be a cause of suffering rather than improvement. It may also indicate sedatives and analgesics without listening to the real needs of the patient.
Paternalistic: doctor and nurse turn away emotionally and begin to treat him like a child who does not listen or take the patient as an object of scientific interest.
Resignation: often decide to leave therapy without really knowing the opinion of the patient. A physician may not consider worth keeping a treatment to a patient. Although the patient must spend the last weeks of life can serve to settle pending matters before his death. In any case, even though in many cases is fully indicated the abandonment of treatment, this should not mean abandoning the patient.
Similarly when the family gets to know about the impending death of their loved one, they also experience denial at first. Even when the patient himself comes to know about the terminal disease he has, he experiences denial. Going through a denial phase is natural but people who do not get over this phase pay the price for it in many ways.
Cost of Denial
It has been observed that the denial of impending death of a terminally ill patient creates a lot of problems for the family, care givers and the patient. When such patients reach the end of their life certain concerns need to be considered. And when the family and the patient are in the state of denial, they tend to have less communication with each other and hold on important information which should be shared before the death of the patient. (Luthy, Cedraschi, Pautex, Rentsch, Piguet, Allaz, 2009) Most often the patient and his/her family has to deal with decisions of various kinds, these include but are not restricted to practical, psychosocial, social, spiritual, cultural, legal, existential, or medical in nature.
Lack of communication acts as a major obstacle resolving issues related to death of a person. Most of the times the family and the patient face a situation where they need to decide as to whether the patient should be kept at home or should be given care at hospital, or they need to decide as to which treatment plan to go for etc. In such situations when there is lack of communication between the two parties then a solution cannot be provided; and we know that lack of this communication is due to the denial the family or the patient about the impending death of the patient. The patient often has to make legal decisions regarding wills and powers of attorney which cannot be done if the patient does not communicate with his family openly. A number of patients may wish to reveal life's meaning to the family as they perceived it in their life, and few may want to do a concluding evaluation of life. Some may want to finally face their psychologically incomplete issues.
Others would want a specific ritual to be performed before or after their death. In some…