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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)
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It respects the goals,
likes and choices of the dying person.
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It looks after the
medical emotional, social and spiritual needs of the dying person.
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It supports the needs
of the family members.
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It helps gain access
to needed health care providers and appropriate care settings.
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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:
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Concern:
Empathy, compassion, and involvement are essential.
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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.
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Communication:
Allow patients to speak their minds and get to know them.
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Children:
If children want to visit the dying, it is generally advisable; they
bring consolation to dying patients.
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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.
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Cheerfulness:
A gentle, appropriate sense of humor can be palliative; a somber or
anxious demeanor should be avoided.
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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):
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Assessment of the
severity of the symptoms.
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Evaluation for the
underlying cause.
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Addressing the social,
emotional and spiritual aspects of the symptom.
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Discussing the
treatment options with the patient and family.
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Using therapies
designed as around the clock interventions for chronic symptoms.
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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:
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:
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Deal with mental
anguish and fear of death,
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Try to respond
appropriately to patient’s needs by listening carefully to the
complaints and
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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).
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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.
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Developing a sense of
control and efficacy.
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Encouraging peer
groups for families coping with bereavement.
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Developing increased
resourcefulness in dealing with death related situations.
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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.
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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:
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Reflects denial of the
inevitable.
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There is no way to
preserve bodies so that their organ will resume functioning when they
are thawed (Darwin and Wowk, 1992).
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Immortality does not
yet fall within the province of technology (Shermer, 1992).
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.
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