Article on “DEATH AND DYING“
ADITI SINGH, M. Phil, Ph. D. Scholar; DIGVIJAY SINGH, M. A., Ph. D. Scholar, & S. H. NIZAMIE,D.P.M., M.D., Professor of Psychiatry; Central Institute of Psychiatry, Ranchi, India.
The terms “death” and “dying” are not synonymous and have no unequivocal definitions. Death may be considered the absolute cessation of vital functions, while dying is the process of losing these functions. Dying may also be seen as a developmental concomitant of living, a part of the birth-to-death continuum.
What Is Death?
Death is defined as the cessation of all vital functions of the body including the heartbeat, brain activity (including the brain stem), and breathing. It can arrive unannounced at any time and is not the special province of the very aged.
Meanings of Death
Weissman (2000) distills meanings of death into four categories: (1) Death is an illusion and an extension of life, a prologue to another form of life; death means transition, not extinction. (2) Death is an inevitable and inexorable fact of life, a confrontation with finitude; it is an endpoint in the “contract” between the living and life’s parameters. (3) Death is an explanation and expiation of life, a final judgment on the life process; it offers retribution or reward, a release from mortality’s constraints. (4) Death is an exigency and a defeat of life, a tragedy, negating life’s values, signifying failure and futility. Each of these theories about death is in fact a belief about life (Zisook & Downs, 2000).
From biological point of view, death is the permanent cessation of all vital functions. From broader psychological, societal and cultural perspectives, death is much more than the end stage of a biological process. Concepts of death are highly subjective, are exceedingly complex, and change over time. Furthermore the meanings of death are highly coloured by the attitudes of the individuals who hold them as well as the situational context in which these individuals find themselves.
Dimensions of Death
Death has three dimensions. Impersonal dimension of death considers it as an impersonal event, stripped of human element and the dead are simply dead bodies classified or discarded according to various categories. We stand in an impersonal and unilateral I-It relation to specimens whose unique existence does not matter. It is death of an object that entails no personal grief or loss. Obituaries of strangers have impersonal significance because emotional loss is missing (Weisman, 1985).
Interpersonal dimension of death is concerned with the objective fact of the death of the other one. Our subjective death is not involved; it is the loss of a significant person that affects us. It is represented by I-You; the typical response is grief and bereavement. While impersonal death refers to “it is dead”, Interpersonal death means “someone else is dead”. Interpersonal death changes the psychosocial field and, in turn, alters the interpersonal experience of those affected.
Intrapersonal death refers to the inner experience of personal mortality, which most people dread but find difficult to anticipate. It is the only dimension that really matters. The impact of the dead body or death of the other one is important only because of their importance for subjective death (Weisman and Haekett, 1961).
ATTITUDE TOWARDS DEATH: LIFE CYCLE CONSIDERATIONS
How could we understand why people sometimes withdraw from friends who are terminally ill? How can we comprehend intimate relationships without insight into the fear of loss? Even the youngest children are aware of separation and its threat to their survival.
Young children do occasionally express spontaneous insight into the finality of death, as when encountered a dead animal or withered plant (Encyclopedia of Psychology, 2000). Nagy (1948) reported three stages of development of death related cognitions in children. Stage one present until age five, lacks appreciation of death as final and complete cessation. Separation is the theme most clearly comprehended by the youngest children. Stage two children think of death as final but not inevitable. A strong tendency to personify is noted in this stage. Stage three beginning at age nine or ten is marked by comprehension of death as both final and inevitable. The prospect of personal mortality seems to be accepted. Anecdotal reports suggest that the child’s discovery of death begins much earlier than the most cognitive theorists seem prepared to accept.
The affective and cognitive development of children colors their understanding of death and their subsequent fears about dying. At the preschool, preoperational stage of cognitive development, death is seen as a temporary absence, incomplete and reversible, like departure or sleep. Separation from the primary caretakers is the main fear of a preschooler. This fear surfaces as an increase in nightmares, more aggressive play, or concern about the deaths of others rather than in direct discourse. Regression to more infantile behaviors signals increasing dependence on parents. Dying preschoolers need reassurance from their parents that they are loved, that they have done nothing wrong, that they are not responsible for their illness, and that they will not be abandoned.
School-aged children manifest concrete-operational thinking and recognize death as a final reality. However, they view death as something that happens to old people, not to them. Between the ages of 6 and 12 years children have active fantasy lives of violence and aggression, often dominated by themes of death and killing. Death may be personified as a skeleton or bogeyman that takes people away. Dying school-aged children ask questions about their illness if encouraged to do so; however, if they receive cues that the subject is taboo, they may withdraw and participate less fully in their own care.
Many of us hesitate to talk about death, particularly with youngsters. But death is an inescapable fact of life which we must deal with, and so must our children. By talking to them about death, we may discover what they know and do not know; if they have misconceptions, fears, or worries. We can then help them by providing information, comfort, and understanding.
Long before we realize it, children become aware of death. They see dead birds, insects, and animals lying by the road. They may see death at least once a day on television. They hear about it in fairy tales and act it out in their play. Death is a part of everyday life, and children, at some level, are aware of it.
Mixed messages are confusing, and may deepen apprehensions and misunderstandings and may leave children confused. Children look to adults for cues about how to behave in certain situations. It is usually easier to talk about death when we are less emotionally involved. Taking opportunities to talk to children about dead flowers, trees, insects, or birds may be helpful. Some young children show intense curiosity about dead insects and animals. They may wish to examine them closely, or ask detailed questions about what happens physically to dead things. Although this interest may seem repulsive or morbid to us, it is a way of learning about death. Children should not be made to feel guilty or embarrassed about their curiosity. Their interest may provide an opportunity to explain, for the first time, that all living things die and make room for new living things. If the death is violent, a murder or an assassination, it is probably a good idea to say something to reassure children about their safety.
Be open to their questions. Answer them truthfully and as completely as possible, given the age of the child. If you don’t know the answer, just say so. If they want to attend the funeral, let them. If they want to view the body with the rest of the family, don’t prevent them if they are mature enough to understand inevitability and irreversibility of death. Avoid euphemisms. Watch your terminology. Do not equate death with a journey or sleep or the child may be afraid to go to bed. Do not say the person is “with Jesus” without further explanation. The child may hate Jesus for taking his/ her loved ones away from them. Make sure the child understands the difference between minor illness and fatal illness. The child may think they will die the next time they get a cold (NIH, 1995).
Capable of formal cognitive operations, adolescents understand that death is inevitable and final. Their major fears parallel those of all teenagers: loss of control, being imperfect, and being different. Concerns about body image, hair loss, or loss of bodily control may generate great resistance to continuing treatment. Alternating emotions of despair, rage, grief, bitterness, numbness, terror, and joy are common. An adolescent’s cognitive capacity to understand death may not translate into an understanding that their own personal death is possible. The potential for withdrawal or isolation is great because teenagers may equate parental support with loss of independence or may deny their fear of abandonment by actually repulsing friendly gestures. Teenagers must be part of the decision-making process surrounding their death. Many are capable of great courage, grace, and dignity in facing death.
Unlike children and teenagers, older adults often readily accept that their time has come. Although they may not be happy to die, they can be reconciled to it.
According to Erikson, the eighth and final stage in the life cycle brings either a sense of integrity or despair. As elderly adults enter the last phase of their lives, they reflect on their time and how it has been lived. Integrity of the self allows an individual to accept inevitable disease and death without fear of succumbing helplessly. However, if a person looks back on life as a series of missed opportunities or as filled with personal misfortunes, the sense is of bitter despair, a preoccupation with what might have been if only this or that had happened; then death is viewed with fear because it symbolizes emptiness and failure (Zisook, & Downs, 2000).
DEATH ANXIETY AND ITS CORRELATES
Fear and anxiety are among the most frequently used words to characterize orientations toward death throughout the life span. Investigations typically assume that death universally elicits anxiety. Where manifest fear is not present, defensive denial is inferred (Goldings et al., 1966; Jeffres et al., 1961). Conscious fear of death is thought to occur only when there is a serious breakdown of the individual’s defenses, as in extreme psychopathology (Kastenbaum and Costa, 1977).
Janet Belsky (1999) defines “death anxiety” as “the thoughts, fears, and emotions about that final event of living that we experience under more normal conditions of life”. In other words, as people live their lives day to day, they suffer different degrees of anxiety about death.
The various factors psychologists have studied in attempting to measure death anxiety include: age, environment, religious faith and ego integrity, or a personal sense of fulfillment and/or self-worth. A complicating aspect of studying death anxiety is that actually “measuring” anxiety as it relates to these variables has been difficult. The studies used in examining death anxiety do not experimentally manipulate the variables, thus limiting conclusions to correlations (Forner & Neimeyer, 1999). An additional confounding factor is the distinction between “death” and “dying.” In other words, is the greater source of anxiety associated with death, itself, or the process of dying. In spite of these challenges, a number of researchers have reported conclusive findings relating to the impact of the variables noted above on death anxiety.
Fortner & Neimeyer (1999) summarized 49 published and unpublished research studies concerning the relationship between death anxiety and age, ego integrity, gender, institutionalization, physical and psychological problems, and religiosity in older adults and reported that lower ego integrity, more physical problems, and more psychological problems are predictive of higher levels of death anxiety in elderly people. Tang et al (2002) investigated death anxiety among Chinese college students and reported that younger as compared with older students and women as compared with men tended to be more death anxious. Those with low levels of self-efficacy and external health control orientations were more likely to report a high level of death anxiety. Wu et al, (2002), who studied emotional reactions of Chinese elderly people toward death, have also reported high level of negative correlation between death anxiety and age. On the other hand, Rasmussen & Brems (1996) advocate role of psychosocial maturity as better predictor of death anxiety than age and that as psychosocial maturity and age increase, death anxiety decreases. Suhail & Akram (2002) also have concluded that Women and less religious people reported to experience greater anxiety.
Gender and Death Anxiety
Women report higher levels of death anxiety and they are more responsive and sensitive to the needs of the people with life threatening conditions. This could be due to the fact that, expression of feelings, especially those of vulnerability, are encouraged in girls but discouraged in boys.
Age and Death Anxiety
Available data do not support the hypothesis that we become more anxious about death with advanced age, because of the decreased distance from death. Two main reasons have been proposed: first, gradual acceptance of death with advancing age and maturity, second, for some elders fear of life can be greater than fear of death. Many older people experience social isolation, financial concern, and age related physical problems which increase their dissatisfaction with life.
Role of Religious Belief
In general, no clear pattern of association has been discovered between religious belief and death anxiety. It interacts with various factors: the particular religion, cultural history, individual history and situational context. Religious belief, faith and belief in after life seem to help many people face the prospect of death, but they are still vulnerable to concern about the terminal experience and the effect of their death on others. Many people feel secure when they are certain that the proper religious rituals will be performed after their death.
Denial of Death
We can find many examples of Death Denial and taboo in our society. On direct self-report measures, most adults report low levels of death anxiety, but on indirect measures, physical signs of stress have been found, when exposed to death-related massages. Some authors have questioned about its specificity for death related stimuli.
Arndt et al. (2001) have shown that exposure to subliminal death, but not subliminal pain priming was associated with facial electromyographic changes.
Studies have revealed that fear of death is either due to the process or consequences of death (Abdel-Khalek and Ahmed, 2002). Logically, no one can imagine about one’s own extinction, and fantasies of death are projected fantasies of life. Thus, problem in accepting death comes not from death per se, but the way one has lived his life.
THEORIES OF DEATH ANXIETY
As mentioned above, study of death and death related phenomena has always fascinated researchers which has resulted in the burgeoning of popular scientific interest in thanatology. In their attempt to explain death anxiety and related phenomena, various researchers have propounded several theories. Some of the important theories and models are being discussed.
Freud’s Concept of Death Instinct
Freud has juxtaposed life instincts with death instincts, and the two were referred to as Eros and Thanatos in Beyond the Pleasure Principle. Although Freud could not provide clinical data that directly verified the death instinct, he thought it could be inferred by observing the repetition compulsion, the tendency of persons to repeat past traumatic behavior. Freud felt that the dominant force in biological organisms had to be the death instinct. He viewed it as a tendency of all organisms and their component selves to return to an inanimate state. Freud’s notion of the death instinct was clearly linked to the constancy principle and was also associated with what he termed the Nirvana principle, which postulates that an organism strives to discharge internal tension and to seek a state of rest (Gabbard, 2000).
Terror Management Theory
Terror management theory (TMT) is a theory based on existentialism which explains how fear of death underlies much of what we do. It focuses on the psychological mechanisms that we use to buffer the anxiety aroused by death awareness. It was proposed by Jeff Greenberg et al (Greenberg et al., 1986; Solomon et al., 1991). TMT assumes that death-related anxiety is our most fundamental source of anxiety. Like other species, human beings have a basic self-preservation drive. Combining this drive with the realization that we will die creates in us a paralyzing terror of death. In order to ward off this anxiety, according to terror management theorists, we create and participate in culture. By participating in culture, we are able to provide our lives with order, structure, meaning, and even permanence.
Greenberg et al (2000) showed that people use two types of defense strategies against thoughts of death: proximal defenses and distal defenses. They make use of these two defense strategies under different circumstances, and in a different temporal order. When their mortality was made salient and these death-relevant thoughts remained in their immediate conscious awareness, people attempted to deny their vulnerability to death, thus suppressing or blocking out death-related thoughts. This denial of vulnerability operated as a proximal defense. People whose mortality had been made salient but for whom death-relevant thoughts were not in immediate conscious awareness used distal defenses. The distal defense consisted of affirming a cultural worldview. Because of the death denying function of the cultural world view, the encounter with a different world view may pose a threat to the validity of our beliefs and the defense from death awareness that they provide. As a result, one may be motivated to reject the threatening worldview and defend one’s beliefs (Florian et al., 2001).
The defensive management of terror of death seems to be achieved by two psychological mechanisms. The first mechanism consists of cognitive and behavioural efforts aimed at validating one’s cultural world view. The second mechanism consists of cognitive and behavioural efforts aimed at increasing self-esteem by living up to hose standards of value prescribed by the culture (Taubman-Ben-Ari et al., 2002).
Recently, Mikulincer and Florian (2000) and Florian et al. (2002) claimed that close relationships may also buffer the terror of death. Here it becomes relevant to mention that Bowlby’s (1969) attachment theory also claims that proximity maintenance to others is a psychoevolutionary device that helps individuals deal with distress elicited by stressful events (Taubman-Ben-Ari et al., 2002).
Meaning Management Model
How we view death and how we cope with death anxiety can profoundly affect every aspect of their lives – either positively or negatively. This model (Wong, 2002) proposes that meaning management is more adaptive than terror management in dealing with death anxiety. Death is the only certainty in life. All living organisms die; there is no exception. However, human beings alone are burdened with the cognitive capacity to be aware of their own inevitable mortality and to fear what may come afterwards. Furthermore, their capacity to reflect on the meaning of life and death creates additional existential anxiety.
According to Goodman (1981), “The existential fear of death, the fear of not existing, is the hardest to conquer. Most defensive structures, such as the denial of reality, rationalization, insulation erected to ward off religiously conditioned separation-abandonment fears, do not lend themselves readily as protective barriers against the existential fear of death”.
To cope with fear of non-being, people resort to various kinds of symbolic immortality by assuming that one can live forever through progeny (Biological), believing in afterlife and that soul never dies (Religious and spiritual), living through one’s works (Creative), through the survival of nature itself (Natural) and through identification with an institution or tradition (Cultural).
Acceptance of death involves a willingness to let go and detach oneself from events and things which one used to value. The meaning management model emphasizes that human beings are born with the innate need for meaning, but it may lie dormant because of our preoccupation with the business of living and death and suffering awaken in us the urgent need to search for meaning and purpose for life and death. We can discover and create meaning in every situation, even in the face of death.
Meaning management helps deepen one’s faith and spirituality and also enables to achieve a better understanding of the meaning and purpose of life. It helps construct a useful psychological and spiritual model that offers the best protection against the fear of death and dying. It motivates us to embrace life – to engage in the business of living, regardless of our physical condition and present circumstances.
It is not just rationalization or cognitive reframing, but a reconstruction and transformation of values, beliefs and meaning systems. It emphasizes that the way we live foreshadows the way we die. By accepting death and understanding its full meaning, we acquire wisdom. By accepting death through faith, we find courage and an undying hope.
Evaluation of Theories of Death Anxiety
Psychoanalytic theory has served a useful guide to observation and reflection. The basic flaw of this theory is unverifiability.
Existential theory proposes that acceptance of death is a mark of maturity, but this is an attractive philosophical proposition, rather than an established fact.
The proposition of terror management and meaning management theories seems attractive, having a secure interpersonal relationship and a sense of purpose in our life protects us from death anxiety, but before acceptance, adequate empirical validation is necessary to support these new theories.
|DEATH AND DYING|
|STAGES OF DEATH AND DYING |
Dying is a process, the end point of which is death. In this sense dying is a terminal part of living. The coping responses during this particular segment of life are shaped by previous experiences with death, as well as by cultural attitudes and beliefs. Kubler-Ross (1969) postulates five stages that many dying patients pass through from the time they first become aware of their fatal prognosis to their actual death:
On being told that one is dying, there is an initial reaction of shock. The patient may appear dazed at first and may then refuse to believe the diagnosis or deny that anything is wrong. Some patients never pass beyond this stage and may go from doctor to doctor until they find one who supports their position.
Patients become frustrated, irritable and angry that they are sick. A common response is,” Why me? ” They may become angry at God, their fate, a friend, or a family member. The anger may be displaced onto the hospital staff or the doctors who are blamed for the illness.
The patient may attempt to negotiate with physicians, friends or even God, that in return for a cure, the person will fulfill one or many promises, such as giving to charity or reaffirm an earlier faith in God.
The patient shows clinical signs of depression- withdrawal, psychomotor retardation, sleep disturbances, hopelessness and possibly suicidal ideation. The depression may be a reaction to the effects of the illness on his or her life or it may be in anticipation of the approaching death.
The patient realizes that death is inevitable and accepts the universality of the experience. Under ideal circumstances, the patient is courageous and is able to talk about his or her death as he or she faces the unknown. People with strong religious beliefs and those who are convinced of a life after death can find comfort in these beliefs (Zisook & Downs, 1989).
Evaluation of the Model
These five stages are not all encompassing or prescriptive. Not everyone will reach these stages; perhaps only a few will reach acceptance. A patient may demonstrate aspects of all five stages in one interview or may fluctuate between stages. Moreover, patients may exhibit other coping methods—such as terror, humor, or compassion—to offset each stage. This model is criticized as a highly subjective interpretation in which observation and intuition has been expended into unwarranted generalization. The role of situational and personal factors has been minimized. In addition too, this model generates unrealistic expectation, that patient will follow the predetermined pattern, among both public and health professionals (Silver and Wrotman, 1980). The emotional reactions to terminality vary across individual, and to a greater extent depend upon his or her style of living (De Spelder and Strickland, 1993). Despite these limitations, Kubler-Ross’s pioneer and unique work has certainly generated a renewed concern for the dying person.
IMMINENT DEATH: SYMPTOMS AND CONCERNS
Predicting the exact time of death is usually hard. The last hour or days of the dying process can be the most difficult for the patient, family, and physician. Fortunately for a vast majority of patients, the last hours or days are spent in a comatose state, which appears to be a comfortable death. However, for some, the end can be a harrowing process (Dial, 1999). Sources of suffering of a dying patient can be classified in to three categories. Physical symptoms, psychological symptoms (eg, depression) and existential distress (eg, concerns about death). Depending upon the nature and chronicity of illness, physical symptoms may include pain, fatigue, nausea, vomiting, problems with urination, difficulty in swallowing, shortness of breath, weakness, dry mouth, change in taste and fever.
Psychological symptoms and existential distress also are sources of suffering since they too can be experienced as unpleasant, can occur on a frequent or chronic basis, and can be perceived as uncontrollable (Cassell, 1982, Doyle, 1992). Most patients at the end of life develop psychological and psychiatric symptoms either alone or in combination with physical symptoms (Kaasa et al., 1993). Among the many possible psychological and psychiatric complications, the most common are anxiety, depressive and cognitive symptoms. They may show restlessness, irritability, dysphoric mood, anhedonia, disorientation, memory impairments and disturbance of consciousness. They may be distressed thinking of unfulfilled aspirations, unresolved guilt, loss of personal integrity, increased dependency on others, meaninglessness of continued existence, anticipated separation from loved ones and fear of death.
Often, there are characteristic signs when death is near. Changes in respirations may occur. Slow and fast respirations or long periods without a breath are common in the dying person. Moaning may occur with breaths and does not necessarily mean the person is in pain. Secretions in the throat or the relaxing of the throat muscles can lead to noisy breathing, sometimes called the death rattle. Repositioning the patient or using drugs to dry secretions can minimize the noise. This breathing can continue for hours.
At the time of death, a few muscle contractions may occur and the chest may heave as if to breathe. The heart may beat a few minutes after breathing stops, and a brief seizure may occur. Consciousness may decrease. Mental confusion or decreased alertness may occur just prior to death. The limbs may become cool and perhaps bluish, mottled or blotchy. The changes occur due to a decrease in oxygen and the body’s circulation slowing down. The person may suddenly become incontinent (unable to control bowel and/or urine elimination). Physical disfigurement may occur from a progressive tumor. Unless the dying person has a rare infectious disease, family members should be assured that touching, caressing, and holding the body of a dying person, even for a while after the death, are acceptable. Doing so seems to counter the irrational fear that the person really did not die (Merck, 1998).
MANAGING DEATH ANXIETY
Human beings have a basic self-preservation drive. Combining this drive with the realization that death is inevitable creates in them a paralyzing terror of death. In other words all human drama is, to a great extent, a story of how human beings cope with the terror of death, and how they overcome death anxiety through a great variety of conscious efforts and unconscious defense mechanisms. Taking into consideration all these factors, it becomes necessary to help people manage death anxiety in such a way that facilitates growth. Following are some of the most commonly used techniques to deal with death anxiety.
Role of Religiosity/ Spirituality
Religion is a prime source of strength and sustenance to many people when they are dealing with death. Different religious theories explain the inevitability and even necessity of death from different perspectives. According to the Gita, soul is not destructible but immortal. It says that death of the body is certain and irrelevant but eternal Self or the universal Self is immortal, therefore there should be no grief over what is inevitable, even necessary. It further explains that the Self instead of dying, merely goes on to take a new body and start the process all over again, therefore it is pointless to worry about the discarding of the present body (Srimadbhagvadgita, ch. 2, verse 11, 22, 23; Kamath, 1993).
In The Bible also death has been viewed in a positive manner. It says “Blessed are the dead who die in the Lord from now on…….that they may rest from their labors, and their works follow them (Revelations, ch. 14, verse 13)”. This verse captures well the Christian views about death that there is no life after death; one has to rejoice death as it is means of entering into God’s kingdom depending the deeds on earth.
Spirituality and religiosity have been reported to play significant role in managing death anxiety and enhancing sense of well being, as mentioned by various researchers. Alvarado et al (1995) report that persons with lower death anxiety had greater strength of conviction and greater belief in afterlife. Nelson et al (2002) also have found strong negative association between the Spiritual Well-Being scale and the HDRS.
Death anxiety is inversely proportional to life satisfaction (Yalom, 1980). When an individual is living authentically, anxiety and fear of death decrease (Richard, 2000). The central objective of existential psychotherapy is to enable the person to live authentically: actively observed and involved with other people and things, while appreciating and accepting his nature as being the world (Encyclopedia of Psychotherapy, 2002).
Human beings are in a presumably unique position as compared to other species, given that they are forward-looking and can anticipate some aspects of the future. Ultimately, the future brings death for all. Recognition of death plays a significant role in psychotherapy, for it can be the factor that helps us transform a stale mode of living into a more authentic one (Yalom, 1980). Confronting this realization produces anxiety. Frankl (1969) also contends that people can face pain, guilt, despair and death in their confrontation, challenge their despair and thus triumph. It also postulates that a distinctly human characteristic is the struggle for a sense of significance and purpose in life. Existential therapy provides the conceptual framework for helping the client challenge the meaning in his or her life.
The existentialism does not view death negatively but holds that awareness of death as a basic human condition gives significance to living and that human suffering can be turned into human achievement by the stand an individual takes in the face of it. A distinguishing human character is the ability to grasp the reality of the future and inevitability of death. It is necessary to think about death if we are to think significantly about life. If we defend ourselves against the reality of our eventual death, life becomes insipid and meaningless. But if we realize that we are mortal, we know that we do not have an eternity to complete our projects and that each present moment is crucial. In this way our awareness of death is the source of zest for life and creativity.
Heintz and Baruss(2001) reported that death anxiety is negatively correlated with existential well-being.Kissane et al (1997) evaluated the effectiveness of Cognitive-existential group therapy for patients with primary breast cancer–techniques and found it to be useful helping the patients coping with death anxiety, the collaborative doctor-patient relationship, relationships with partner, friends and family, life style effects and future goals.
As defined by the world Health Organization, palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychologic, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. In other words palliative care is a special care, which affirms life and regards dying as a normal process, neither hastens nor postpones death, provides relief from pain and other distressing symptoms, integrates the psychological and spiritual aspects of patient care and offers a support system to help patients live as actively as possible until death and helps the family cope during the patient’s illness and in their own bereavement.
Palliative care is based on five major principles (Foley and Carver, 2001):
– It respects the goals, likes and choices of the dying person.
– It looks after the medical emotional, social and spiritual needs of the dying person.
– It supports the needs of the family members.
– It helps gain access to needed health care providers and appropriate care settings.
– It builds ways to provide excellent care at the end of life.
The relief of suffering is one of the central goals of palliative care in terminal illnesses. Suffering is frequently associated with the experience of aversive physical symptoms (eg, pain); however, many patients suffer even in the absence of such symptoms. Secondly, suffering due to advanced disease does not appear to be limited to the affected patient. Family members also suffer, which may, in turn, exacerbate the patient’s suffering. According to psychosocial perspective, suffering is best viewed as a subjective phenomenon that can be influenced by biological, psychological, and social processes. The potential sources of suffering in terminal illnesses can extend beyond physical symptoms to include psychological and psychiatric complications (eg, anxiety, depression, and cognitive disorders) and existential distress emanating from past, present, and future concerns. Relief of these sources of suffering can be achieved through a multidisciplinary approach to patient care in which experts in mental health and pastoral care contribute to the treatment effort. Addressing the psychosocial aspects as well as the medical aspects of palliative care can further reduce the suffering experienced by patients with terminal illnesses.
Cassen (1991) suggests seven essential features in the management of the dying patient, namely: –
1. Concern: Empathy, compassion, and involvement are essential.
2. Competence: Skill and knowledge can be as reassuring as warmth and concern. Patients benefit immeasurably from the reassurance that their providers will not allow them to live or die in pain.
3. Communication: Allow patients to speak their minds and get to know them.
4. Children: If children want to visit the dying, it is generally advisable; they bring consolation to dying patients.
5. Cohesion: Family cohesion reassures both the patient and family. The clinician who gets to know the family maximizes patient support and is prepared to help the family through bereavement.
6. Cheerfulness: A gentle, appropriate sense of humor can be palliative; a somber or anxious demeanor should be avoided.
7. Consistency: Continuing, persistent attention is highly valued by patients who often fear that they are a burden and will be abandoned; consistent physician involvement mitigates these fears.
The management of individual symptoms in terminally ill follows a general stepwise approach (Dial, 1999):
– Assessment of the severity of the symptoms.
– Evaluation for the underlying cause.
– Addressing the social, emotional and spiritual aspects of the symptom.
– Discussing the treatment options with the patient and family.
– Using therapies designed as around the clock interventions for chronic symptoms.
– Reevaluating the control of the symptom periodically.
The major focus of most dying patients is the avoidance of pain. Controlling pain in terminally ill patients requires attention to the following:
– Potential etiology of pain
– Use of medications
– Use of nonpharmacologic methods
Nonpharmacologic interventions are important adjuvants, as well as primary mechanisms, for controlling pain. Several behavioural therapies, hypnotherapy, biofeedback techniques and relaxation can be used. Other physical symptoms like dyspnea, constipation, nausea and vomiting and urinary retention also require to be treated appropriately. Similarly, the psychiatric symptoms and existential distress should also be dealt carefully using both pharmacological and nonpharmacological techniques.
Guidelines for Terminal Care Providers
Physicians have most often been criticized for limiting themselves to brisk and perfunctory interactions that do not respond to their patient’s cognitive and emotional needs (Encyclopedia of psychology, 2000). Therefore there is a need that all the professionals including physicians, psychologists, social workers and nursing staff, who decide to involve themselves in the treatment of a dying person, must commit themselves (Schwartz and Karasu, 1997) to:
– Deal with mental anguish and fear of death,
– Try to respond appropriately to patient’s needs by listening carefully to the complaints, and
– Be fully prepared to accept their own counter transferences, as doubts, guilt and damage to their narcissism are encountered.
Management of the dying patient often elicits anxiety in physicians. Kvale et al (1999) identified the association of physicians’ personal fear of death, tolerance of uncertainty and attachment style with physicians’ attitudes toward dying patients and reported that physician tolerance of uncertainty plays a significant role in physicians’ attitudes toward the dying patient and that decreasing physicians’ stress from uncertainty by educating them in the management of the dying patient may improve their attitude toward death and may better prepare them to provide end-of-life care. Viswanathan (1996) also explored gender and specialty differences in death anxiety, locus of control, and purpose in life of physicians, and if these variables might influence the clinical behavior of physicians regarding death notification. Results showed that female physicians scored higher in death anxiety and that purpose in life was inversely correlated with death anxiety and external locus of control.
Guidelines to Improve the Quality of Care
In recent years, there have been several researches in the direction of discovering effective approaches to improve the quality of communication and therefore the quality of care in death related situations (Encyclopedia of psychology, 2000). These guidelines can be summarized as follows:
Additionally, studies suggest that whatever strengthens a person’s sense of purpose, in life and connection with enduring values, also improve one’s ability to withhold the stress of terminal illness, grief and offering services to those affected (Schnider and Kastenbaum, 1993; Vishvanathan,1996).
– Education and role playing can improve perspective taking and empathetic skills, respect each other’s point of view as well as appreciate the situation of patient and their families.
– Developing a sense of control and efficacy.
– Encouraging peer groups for families coping with bereavement.
– Developing increased resourcefulness in dealing with death related situations.
– Recognizing that a moderate level of death anxiety is not only acceptable, but useful and has been found that empathy, openness and willingness to help vulnerable and suffering people often are associated with a discernible level of death anxiety.
– Improving our understanding of pain and suffering will also improve communication and effective interactions.
SOME ISSUES RELATED TO MANAGEMENT
Ethical and Legal Issues
The contemporary practice of palliative care raises important ethical issues that deserve thoughtful consideration. Patients have a right to refuse Life-sustaining treatment, even if they die as a consequence (Stanley, 1992). This right is a component of the ethical and legal doctrines of informed consent and informed refusal. Here the patient must have the ability to comprehend the available choices and their risks and benefits, to think rationally and to express a treatment preference. The law makes no distinction between withholding and withdrawing treatment once the patient has refused it (Meisel, 1991). Patient who lacks a decision making capacity requires a surrogate decision maker. Advanced directives and appointment of a health-care agent are also used (Bernat, 2001).
Right to refuse life-sustaining treatment derives from the concept of respect for self-determination and autonomy and the right to be left alone. Physicians are allowed to help patients only to the extent that patients permit them to, physician can make strong recommendations but patients will choose to accept it. The doctrine of informed consent and refusal has three elements all of which must be met for validity: adequate information must be conveyed to the patient, the patient must be able to decide, and the patient must have freedom from coercion.
Before accepting refusal of life sustaining treatment, physician must ensure its validity that this is not due to reversible depression, irrational thinking or impulsive reaction to particular situation. During discontinuation of life-sustaining treatment, proper palliative care has to be given.
This concept provides that known but unintended consequences of opioids, such as respiratory suppression and sedation, are acceptable, even if they hasten death, because the primary effect of the treatment is the relief of suffering.
Hospice Versus Hospital and Home Care
The hospice care is much less stressful for the patient than a traditional hospital (Adkins, 1984; Kane et al., 1985).
Patients in specialized palliative care found to differ from more dying in hospital, in terms of less isolation, anxiety and positive feelings (Linda et al., 1994).
While home care can be emotionally the most satisfying for the patient, studies do show that even with help from home based hospice program, home care can place tremendous stress on other members of the family (Aneshensal et al., 1993).
The Dying patient and the Physician
The process of death can release overwhelming emotions not only in patient but also in physicians. Perhaps, as a result of their education and conditioning, physician, are afraid to feel helpless and project hopelessness to their patients. To stand by and watch a person slip away, requires confronting the feelings that arises when we are with the dying. Thus, some physicians show their discomfort and uneasiness either by continuing useless therapies or by detaching themselves from the care.
Role of Psychologists
There are many ways in which psychologists might contribute to the care of the dying, but the present situation is unsatisfactory. American Psychological Association (2000) reported that psychologists are virtually absent in end of life care arenas.
Lastly, the current state of affairs can be summarized in Emanuel’s words ‘there is gap between accepted policies and actual practices, things are far from ideal, too many patients are unprepared for death, too many patients still have symptoms left untreated, too many patients are not involved in decision making, too many patients die in hospital with inadequate care, too many families are crushed by the burden of caring for a terminally ill relative. To overcome these problems we need to end the taboo against talking about death’ (Emanuel, 1997).
LIFE AFTER DEATH
Near Death Experience (NDE) and cases of reincarnation type are the two phenomena that have been claimed as evidence of after life.
Near Death Experience
NDE is an altered state of consciousness usually occurring after traumatic injury and almost invariably involve risk of life. This is an episode split-off from the patient’s usual life and marked by unusual dream like events. Some people belief that they were actually “in death”. They report that after “dying” they left their body and floated away, become enveloped in a dark tunnel, and then enter a soothing light, later when they come back to life they are able to recall the events that occurred when they were dead. During the episode their entire past flash before them.
Hallucinations caused by hyperactivation of amygdala-hippocampus-temporal lobe a response of oxygen starved brain, have been proposed as a physiological explanation.
Greyson (1997) argued that correlating NDEs with physical structures or chemicals in the brain, would not necessarily tells us, what causes NDEs.
After effects of NDEs include: increase in spirituality, concern for others, appreciations of life and decrease in fear of death, materialism, and competitiveness.
Since 1960s, Stevension and Pasricha have systematically investigated hundreds of cases of children, who claim to remember their previous life. These children show atypical behavioural and emotional patterns consistent with their claims. Various explanations like fantasy, fraud, cryptamnesia, paramnesia, socio-cultural expectations have been proposed, but their data is in favour of reincarnation hypothesis. Before accepting or rejecting this more investigations have to be done to rule out normal mode of transfer of information and skills.
Cryonics is the preservation of the dead body to be revived, till the time, medical technology advances to do so. The main arguments against cryonics are:
– Reflects denial of the inevitable.
– There is no way to preserve bodies so that their organ will resume functioning when they are thawed (Darwin and Wowk, 1992).
– Immortality does not yet fall within the province of technology (Shermer, 1992).
Currently, these efforts are simply wastage of resources.
Death is still an unknown phenomenon. At the same time we all know that it is the only certainty in life. All living organisms die; there is no exception. However, human beings alone are burdened with the cognitive capacity to be aware of their own inevitable mortality and to fear what may come afterwards. In this enlightened age, man still reacts to death with fear. Much of our response to death is avoidance. Talking about death on a personal level creates discomfort. Fear and anxiety are among the most frequently used to characterize orientations toward death throughout the life span. This is because human beings have a basic self-preservation drive. Combining this drive with the realization that death is inevitable creates in them a paralyzing terror of death. But if people realize that they are mortal, they know that they do not have an eternity to complete their projects and that each present moment is crucial. In this way the awareness of death can be the source of zest for life and creativity.
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|Citation: Singh, A., Singh, D. & Nizamie, S.H. (2003) Death and dying. Mental Health Reviews, 5(2): 22-47. Accessed from <http://www.psyplexus.com/excl/death.html> on August 17, 2010.|
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