Costs of Denial in the Death and Dying Process

¶ … Denial in the Death and Dying Process

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.

Introduction

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 cases people would want to look into unresolved personal issues, confessing to their bad deeds or mentally prepare oneself to meet the creator, or plead for forgiveness from someone who the patient had done wrong to. All these are end of life concerns which can only be dealt with if the patient knows about his impending death.

In some cultures talking about death or planning things according to person's death are considered unethical and often regarded as welcoming death. Other end of life concerns are related to decisions about the treatment and care possibilities which cannot be made without open communication with the family and the patient.

Literature Review Of Current Research

Learning to cope with the losses and needs in the context of terminal illness, it becomes a challenge for the patient, for family and health professionals.

Communication Between Doctor And Patient

Numerous studies have shown that patients often think about the treatment they would receive if they were terminally ill and who would make decisions about palliative care. Although patients often say they would like to talk to their doctors about care at the end of life, few have had such conversations. One of the studies on the subject found that 66% of elderly patients and patients with chronic illness who visited an outpatient department of medicine had ever thought about the decisions taken in case of a disease incurable, 62% had been asked the question of what treatment they would like, but only 9% had talked with their doctors (Luthy, Cedraschi, Pautex, Rentsch, Piguet, Allaz, 2009).

Studies in other contexts are even lower numbers of communication between doctor and patient on these issues. A study based on veterans who consulted a geriatric clinic (mean age 82 years) showed that 17% of the patients had previously discussed with someone else, your preferences about CPR, but none had done with their physicians (Zimmerman, 2007). Other studies indicate however that in other situations there is a high percentage of patients discuss with their doctors about facts relating to the end of life. For example, Yalom (2008). studied a group of highly trained elderly living in a nursing home. More than half had discussed CPR with their physicians, indicating that individuals transferred to a nursing home can be a particularly active and motivated group, different from the general community.

The physicians play a vital role in communicating the patient's condition and prognosis. Many studies have shown that patients want to receive truthful information about their diagnosis and prognosis. Bonanno (2009) conducted an interview type in outpatients. 30% of patients had more than 60 years, 30% had a life expectancy less than 18 months. The researchers found that most patients expect their doctors to talk about their condition and wished to have honest and complete information, without worrying about how to handle such information. Kastenbaum (2008) reported that 95 of 101 cancer patients in a American teaching hospital wanted to get as much information as possible, whether good or bad.

Phillips (2007) conducted a study in U.S. teaching hospitals to determine the medical approach in communication with the patient. The author defined as those with terminal patients a 95% probability of dying within 3 years. Their study found that physicians often limit information to their patients because they think that if the patient or his family does not ask questions it means that they do not want to know more, however if doctors judge that the patient needs to know information for legal reasons, then they would communicate openly with the patient. Physicians also reported in the study that they modify the content and information regarding the disease of the patient according to the maturity and level of knowledge of the patient. The same author found that most physicians were willing to give information on the diagnosis and treatment but were vague when talking about the prognosis. For example, although 84% of doctors said they thought most of the patients knew they were dying, half of respondents did not talk to patients about the matter.

As a result of lack of proper communication about the prognosis, patients can often have a very optimistic view of the situation which can keep them in denial that everything is under control. In a study by Luthy et al. (2009) compared the survival estimates done by physicians about patients with advanced cancer. The results of the study found that doctors often did not give more than 6 months of survival for their patients, which in contrast had a more optimistic view. These results suggest that patients were more likely to choose aggressive treatments that reduced their quality of life, even in cases where the prognosis changed very little.

Many studies have examined various aspects of the process and content of the discussions between doctor and patient about facts relating to the end of life. Some have compared what it would like to discuss patients and what else they discussed with their physicians. For example in a study conducted in U.S. By Hegedus et al. (2008), examined the experiences of cancer patients regarding communication of the diagnosis and prognosis. Patients over 75 years were excluded. They found that life expectancy was discussed in only 27% of cases, although 57% of patients wanted to discuss the issue, only 35% of patients discussed the effects of cancer on other aspects of life with their doctors, while 65% wanted a discussion of this topic. The study showed variability about the patient's desire to have the presence of their spouse (50%), friend (3%) or being alone (38%) upon learning of his diagnosis.

Tomer et al. (2008) conducted one of the few studies that collected data on the current discussion about Do Not Resuscitate orders on the (NR). They used coded videotapes of the interviews between doctors and their patients. In describing the nature of cardiopulmonary resuscitation, most physicians cited intubation (84%) and mechanical ventilation (100%), but few mentioned other common aspects of resuscitation and chest compression (55%) or admission to an ICU (32%). Few doctors discussed the small chance of survival after resuscitation or give statistical estimates of the likelihood of survival or risk of cardiopulmonary resuscitation including: an extended stay in the ICU (3%), neurological sequelae (13%) or procedure-related complications such as rupture of ribs, pharyngeal trauma, or pain and suffering (16%). Most physicians (94%) did not mention alternatives to resuscitation as letting the patient die.

Communication Issues Between The Patient And The Famly: Towards The End Of Life Of A Terminally Ill Person

At the end of life the patient has special needs which can be met only through open communication between the family and the patient. These needs can be met through spiritual and emotional care, with the help of those who can help the patient connect to things, practices, ideas and principles that are the essence of life's meaning.

Studies suggest that open communication between the family and the patient is essential in order to deal with issues related to end of life of the patient. Due to denial of the impending death of the patient, certain issues are not dealt with pose serious problems for the family, patient and the caregivers.

When there is lack of communication between the family and the patient financial concerns are not being discussed which may be related to handing over power of attorney of property by the patient to his/her offspring. Finances related to treatment of the patient as to how much is being spent and how much would be required further for more treatment plans if necessary.

There is evidence that some patients in end of life, like the fact that health professionals are more attentive to their spiritual and emotional need (Bonanno, 2009). This favors the establishment of the trust, support, simultaneously directing interventions. Chochinov et al. (2006) developed a model derived from the dignity to the end of life based on qualitative analysis of therapeutic intervention for human dignity, for treating existential anguish among terminally ill.

In this context of spiritual care when dying (Yalom, 2008) proposes some steps as practical guidance, such as control of physical symptoms and the presence to support, promote a life review, to recognize the purpose, value and meaning of life, related to guilt, regret, forgiveness and reconciliation, aiding religious expression reformulating goals, encouraging meditation practices with a focus on helping the patient to heal.

Thus, the existence of interventions is useful as guidelines are becoming valuable spiritual and emotional assessment models. Johnson (2009) describes the case of a patient hospitalized in critical condition in an intensive care unit whose religious choice was Buddhism, who wanted to say goodbye to his family in accordance with their beliefs. By detecting this need, the team sought to develop an intervention plan and met with high barriers to communication with the family. For this situation the model the proposed by Phillips (2007), which categorizes important data for the implementation of an effective care plan, was implemented. This model consists of categories such as: Beliefs and meanings-personal mission or religious justification for events or circumstances, the perception of the meaning of life or authority, individual or group orientation in which the person or his family trust and deposited seeks advice, resources (religious texts) to which patients or their families to use, experiences and emotions, perceptions of the event or circumstance associated with the disease, consequences to face emotional experience; Community-formal or informal group share common beliefs and rituals, rituals and practices, meaningful and specific traditions, Courage and Growth-doubt, the changes in their lives and challenges faced, Vocation and Consequences, moral and ethical decisions that show the response to the call of their beliefs. Through this model, even in adverse conditions, the researchers identified the real needs of the patient and family, reaching its primary objective, the farewell ... transcendence (Phillips, 2007).

More studies have looked into the personal matters not being resolved between the family and the patient due to lack of communication. These issues include expressing feelings to certain family member with whom there has been a misunderstanding or there have been any unresolved issues. Some studies found out that most of the times it is perceived that talking openly about the death of the patient decreases his/her will to live. (The Hospice and Palliative Nurses Association HPNA, 2007) It is also a concern when the patient has not been informed about his health condition by the family and the doctor and the patient does not know the consequences of the treatment he is going through or certain decision that might be needed to be taken if his/her health gets worse and certain treatment selection decision needs to be taken on the dying person's behalf.

Role of Student in The Management Of This Problem

After graduation I plan to work as a social worker because I believe that this is the best way to bring about a positive change in the system. The terminally ill and their families undergo a process of desolation. Although the experience varies between societies and individuals, their fundamentals appear to be universal and biological. Today, the advice is focused on helping patients and family members not to repress their emotions. The most difficult stage for the patient and family is when the patient begins to be in a state of agony or pain, this fear of death grows stronger and lost life expectancy. There are many things one can do as a social worker to comfort a dying patient, simple details that can make their last moments more bearable. I would want the following interventions to be acted upon.

Interventions

The terminally ill patient has very special needs that can be covered if you take the time to listen and find them out. There are certain things which can be done to eliminate the denial of the impending death of the patient and thus deal with the problems that originate from denial. There are 4 ways to reduce the problems that arise from lack of communication between the patient, family and the care giver:

a) Recognize, accept and encourage the patient to express their feelings: Since the terminal patient is away from its normal environment and their daily habits and your life depends heavily on third parties, totally or partially deprived of their points of emotional support. There are often feelings of helplessness, loneliness, depersonalization, and altered body image. The forms of expression and therefore relieve the frustration, anger, hostility, fear and depression that cause these feelings, are very limited by the physical environment of critical care units (hospitals). Maintaining an atmosphere of dialogue and acceptance encourages the patient to express their feelings, and can be a way forward. The frank and open dialogue reduces feelings of depersonalization and anxiety and the patient then avoids the isolation and withdrawal. If the patient is encouraged to express their feelings, you will find it easy to see why these feelings and certain behaviors that may seem abnormal or wrong. It is desirable that both the health staff, like any other member of the care team, are prepared to accept what the patient says, regardless of the emotional charge that the statement holds. There are patients that their conditions cannot freely express their feelings, for this reason they are especially vulnerable to psychological stress. It is necessary for the family and health personnel do not fall into the natural tendency to communicate less with those who are less able to speak. One way to reduce the sense of isolation is to provide a pencil and paper to the patient and keep close at hand so that it can somehow express their fears, their fears and offering help whenever necessary. However these methods are not adequate to express complex feelings or concerns.