Death, Society, and
Human Experience
9th Edition
Robert Kastenbaum
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Copyright © Allyn & Bacon 2007
Chapter Four:
Dying:
Transition From Life
This multimedia product and its contents are protected under copyright law. The following are prohibited by law:
•Any public performance or display, including transmission of any image over a network;
•Preparation of any derivative work, including the extraction, in whole or in part, or any images;
•Any rental, lease, or lending of the program.
•
Copyright © Allyn & Bacon 2007
The Slipping Away
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Rather than a momentous event, most
American die by slipping away alone. Why?
• Medical advances allow patients to survive
longer with terminal illnesses
• A tendency for physicians to see death as their
own failure (so they avoid the patient)
• Dementias often take awareness away
• Use of pre-terminal and terminal sedation
• Not enough staff to sit with all dying patients
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Dying begins…
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As a psychosocial event
• In terms of personal and social life
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Dying may begin when:
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The facts are recognized by the physician
The facts are communicated to the patient
The patient realizes or accepts the facts
Nothing more can be done to preserve life
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Advice to Physicians on “Breaking
the Bad News” to a Patient
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Take the time to establish a relationship with the patient
and family
• Share a fact and let it digest before moving on
• Keep it simple, ask questions
• Explain and educate
• Allow for pauses and reflection
• Respect what seems like denial
• Do not say anything that isn’t true
• Make it clear that you will be with the patient all the way
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Trajectories of Dying
(Glaser, Strauss, & Benoleil (1966, 1968)
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Considered caregivers predictions of certainty of
death and timing of death
• Four types of death expectation based on certainty
and time:
• Certain death at a known time
• Certain death at an unknown time
• Uncertain death but a known time when certainty will be
established
• Uncertain death and an unknown time regarding when
the question will be resolved
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The Lingering Trajectory
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Life is slowly fading
Staff focus on comfort; heroic efforts are unusual
Often these patients are socially dead
Advantage: time for the patient and the family to
prepare for death
Disadvantage: the patient is not dead but not
really alive either
Most typical pattern in Western society, especially
in nursing care facilities
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Types of
Expected Quick Trajectories
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Pointed trajectory – the patient is exposed to a very
risk procedure; patient is alert; staff have time to prepare
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Danger-period trajectory – the patient is not alert;
question of surviving a stressful experience
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Crisis trajectory – the patient is not in acute danger,
but life might be threatened at any moment
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Will-probably-die trajectory – focus on comfort
and wait for death
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The Expected Quick Trajectory
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Most salient features are:
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Time urgency
Intense organization of treatment efforts
Rapidly shifting expectations
Volatile, sensitive staff-family interactions
Staff efforts may depend on:
• The resources available
• The perceived value of the person (stereotypes)
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The Unexpected Quick Trajectory
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Non-ER staff may be confused and panicked
• More staff emotion when
• The patient was an interesting case
• The physician tried hard to save the patient
• The patient died from something other than what she
was being treated for
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Lead to “institutional evasions” by staff –
bypassing regulations to save a life
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Quick Trajectory:
Life-or-Death Emergencies
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Quick trajectory that occurs in a community setting
• Potential problems
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Panic
Inappropriate action
Misinterpreting the situation
Minimizing the danger
Bystanders preoccupied by own concerns
Paramedics and Emergency Technicians (EMTs)
are often involved
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Example of Healthy People at Risk:
Individuals with Hemophilia
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Defect in blood coagulation process; requires
medical intervention to stop bleeding
• Includes more than 15,000 Americans
• Inherited X-linked recessive disorder
• Women carry the trait
• Men have the clinical disorder
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Early diagnosis leads to precautions, drug therapy,
and use of safe plasma transfusions
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Doctor-Patient Communication:
The SUPPORT Study
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Study to Understand Prognoses and
Preferences for Outcomes and Risks of
Treatment (SUPPORT, 1995)
• More than 9,000 patients with life-threatening
diseases
• Five teaching hospitals
• Two-year observational study (case records,
interviews with patients, family, physicians)
• Followed by a 2-year intervention phase
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SUPPORT: Major Findings from the
Observational Study
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Half of the patients who died had moderate or severe pain
during their final 3 days of life
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Physicians often used jargon when discussing CPR; 41%
never discussed CPR with patients
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In 80% of the cases physicians misunderstood what the
patients wanted with respect to CPR
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Physicians often did not follow the patient’s stated
preferences to avoid CPR; in 50% of the cases they did not
write the do-not-resuscitate order
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SUPPORT: Major Findings from the
Intervention Study
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No increase in discussion between physicians and patients
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Physicians continued to disregard patients’ preferences
regarding CPR
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No improvement in pain control
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Computer projections of the patients’ prognoses were no
more accurate than those made by the attending
physicians
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New patient information failed to reach physicians
Copyright © Allyn & Bacon 2007
Suggestions for Improving
Communication
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Be alert to symbolic and indirect communications
• Sharing dreams
• Symbolic language
• Leave-taking actions
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Help to make competent and effective behavior
possible
• Allow the dying person to set the pace and agenda
• Do not confuse the dying person’s values and
goals with your own
Copyright © Allyn & Bacon 2007
Factors that Influence the
Experience of Dying
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Age, particularly for children & elderly, influences:
• Ability to comprehend dying and death
• Legal and personal ability to exercise control
• Perception and treatment by others
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Gender
• Particularly with reproductive system illnesses
• Direct care to the dying is often given by females; care
plans are often developed by males
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Factors that Influence the
Experience of Dying
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Interpersonal relationships
• Those who live longer with terminal illness have active
and mutually responsive relationships
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Other Factors
• Type of disease; some have symptoms that disrupt any
type of normalcy
• Some treatments also cause severe and disruptive
symptoms
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Buddhist Perspective
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Example of an Eastern Theory of Dying
Involves 8 stages
Philosophy: Impermanence; the very nature
of things is to disintegrate
Some people do not move through the
stages
Takes time, open to spiritual development,
and the discipline of an established spiritual
practice to move through the stages
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Buddhist Perspective:
8 Stages
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Stage 1: Eyesight dims, but one begins to have mirage-like
visions.
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Stage 2: Hearing diminishes. There is a new internal
vision of smoke.
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Stage 3: The sense of smell disappears, and there is now
an internal vision that is “likened to fireflies in smoke.” The
dying person is no longer mindful of other people.
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Stage 4: Sensation is lost from the tongue and the body.
The dying person is no longer mindful of his or her own
concern. Breathing ceases. (Death, by Western definitions)
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Buddhist Perspective:
8 Stages
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Stage 5: This is the first of the pure vision stages. White
moonlight is perceived.
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Stage 6: The person experiences visions of red sunlight.
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Stage 7: The person experiences visions of darkness,
faints, and then awakens to the final stage.
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Stage 8: The clear light of death appears. This unique
state of consciousness persists until death.
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Stages of Dying
by Kubler-Ross
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Example of Western Theory of Dying
Five stages
• Denial – “It can’t be true.”
• Anger – “Why me?”
• Bargaining – “If you just let me live I promise I will
________.”
• Depression – The person is less responsive and
thoughts are pervaded by a sense of loss
• Acceptance – A final state of rest and letting go, void
of feelings and emotions
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Shortcomings of Stage Theory,
Applied to the Stages of Kubler-Ross
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The existence of the stages has not been demonstrated
• No evidence has been presented that people actually do
move from Stage 1 through Stage 5
• The limitations of the method have not been acknowledged
• The line is blurred between description and prescription
• The totality of the person’s life is neglected in favor of the
supposed stages of dying
• The resources, pressures, and characteristics of the
immediate environment can also make a tremendous
difference
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Corr’s Developmental-Coping Model
of the Dying Process
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Primary focus: empowerment for the dying person
and those who are intimately involved in
caregiving
• Four challenges
• Physical – satisfy bodily needs, reduce stress)
• Psychological – feeling secure and in control
• Social – keep attachments to individuals, groups and
causes
• Spiritual – meaning, connection, transcendence, and
hope
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Partial Models of the
Dying Person’s Situation
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Restricted Activity
• Limited Energy
• Damaged Body Image
• Contagion
• Disempowerment
• Attributional Incompetency
• Ineffectuance
• Stress Response Overload
• Time Anxiety
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Performance Anxiety
• Loss and Separation
• Disengagement
• Journey
• Closing the Book
• Endangered Relationship
• Struggling Brain
• Storying
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Findings of NIH Survey (2005)
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Spiritual well-being has achieved recognition as a goal in
end-of-life care
Level of staff training varies across settings
Need to heighten awareness of ethical questions, such as
“good death” and needs of care givers vs. care receivers
Current end-of-life care techniques need to be tested and
validated
Enhanced communication between patients, families and
providers is crucial
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Glossary: New Terms
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Apoptosis
Cardiopulmonary
Resuscitation (CPR)
Colostomy Bag
Danger List (D.L.)
Euthanasia
Hemophilia
Institutional Evasions
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Middle Knowledge
• Stage Theory
• Surrogate
• Trajectories of Dying
Copyright © Allyn & Bacon 2007
Copyright © Allyn & Bason 2004