Interesting 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:
1.
Denial
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.
2.
Anger
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.
3.
Bargaining
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.
4.
Depression
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.
5.
Acceptance
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.
Death
Agony
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.
Existential
Psychotherapy
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.
Palliative
Care
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)
1. It respects the goals, likes and choices of the dying
person.
2. It looks after the medical emotional, social and
spiritual needs of the dying person.
3. It supports the needs of the family members.
4. It helps gain
access to needed health care providers and appropriate care settings.
5. 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:
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.
Symptom
Management
The management of individual symptoms in terminally ill
follows a general stepwise approach (Dial, 1999):
1. Assessment of
the severity of the symptoms.
2. Evaluation for
the underlying cause.
3. Addressing the
social, emotional and spiritual aspects of the symptom.
4. Discussing the
treatment options with the patient and family.
5. Using therapies
designed as around the clock interventions for chronic symptoms.
6. 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:
1. Potential
etiology of pain
2. Use of
medications
3. 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:
1. Deal with mental anguish and fear of death,
2. Try to respond appropriately to patient’s needs by
listening carefully to the complaints and
3. 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).
1. 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.
2. Developing a sense of control and efficacy.
3. Encouraging peer groups for families coping with
bereavement.
4. Developing
increased resourcefulness in dealing with death related situations.
5. 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.
6. 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.
“Double
Effect”
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.
Reincarnation
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
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:
1. Reflects denial of the inevitable.
2. There is no way to preserve bodies so that their organ
will resume functioning when they are thawed (Darwin and Wowk, 1992).
3. Immortality does not yet fall within the province of
technology (Shermer, 1992).
4. Currently, these efforts are simply wastage of
resources.
CONCLUSION
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.
Image source: http://www.sxc.hu/photo/1385159
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