death, dying and grief

DEATH, DYING AND GRIEF
Medical psychology seminar
Tamás Dömötör SZALAI
Semmelweis University, Institute of Behavioural Sciences
[email protected]
www.behsci.sote.hu
SEMANTIC DIFFERENCES
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Please write down the first 3 words which turn
into your mind when you hear:
Death
Pain
Cancer
Incurable
These connotations will be a substantial part of your
attitude and communication.
WARM-UP
What dou you think, what is death?
 How would you immagine it?
 Why is it so scaring? What quality of death
makes us frightened?

DEFINITION OF DEATH
Is it still unclear?
 Pulmonary
 Cardiac
 Neurological
 Neocortical definition – brain death
CRITERIA FOR ESTABLISHING DEATH
1.
2.
3.
4.
5.
6.
Unreceptivity and unresponsiveness even to intensely
painful stimuli
No movement or spontaneous respiration for 3 minutes
after being removed from respirator
Complete absence of reflexes, both deep tendon and central
A flat electroencephalogram (EEG) for at least 10 minutes
of technically adequate recording, without response to
noise or painful stimuli
All of above tests repeated in 24
hours with no change
No history of hypothermia
or use of central nervous system
depressants before onset of coma
WHAT INFLUENCES
DEATH?
1. Aging
 Life expectancy was appr.49 years in the 20th century
<-> today around 65-85 years)
2. Chronic diseases
3. Pain and suffering
4. Deficinences of angalgesics
5. Lack of personal decisions
6. Social isolation of death and diseases
 Location of death in 1900 was at home in 80%
<-> now more than 80% in institutional settings)
CAUSES OF DEATH
in 1900:
in 1998:
Influenza
disease (31%)
Pneumonia
Tuberculosis
Gastroenteritis
(all above: 31.4%)
Cardiovascular
(14.2%)
Cardiovascular

Cancer (23%)
Stroke (7%)
CAUSES OF DEATH
Today:
THE RIGHTS OF SEVERELY ILL PATIENTS
(1997. LOW OF HEALTH CARE IN HUNGARY)
1. Right for health care
2. Right for human dignity
3. Right for analgesics
4. Right to for human contact
5. Right for patient information
6. Right for autonomy and decisions about
themselves
7. Right to reject life-sustaining treatment (not
euthanasia)
DYING
Thoughts and fears about
death:
 Impersonal, death of a stranger
 Interpersonal, someone who matters
 Intrapersonal, death anxiety is significantly
higher in those who choose a career in medicine
VIDEO - Kübler Ross: Understanding dying
FEELINGS EXERCISE
4 groups
 Each group has to gather all the feelings
connected to one of the following:
 a) doctors experience when they discover a
patient of theirs is beyond help
 b) the patient experiences while dying
 c) family members experience when a beloved
one is dying
 d) people experience while going through grief
 Discussion

SIGNS OF THE PREACTIVE PHASE OF DYING:
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increased restlessness, confusion, agitation, inability to
stay content in one position and insisting on changing
positions frequently (exhausting family and caregivers)
withdrawal from active participation in social activities
increased periods of sleep, lethargy
decreased intake of food and liquids
beginning to show periods of pausing in the breathing
(apnea) whether awake or sleeping
patient reports seeing persons who had already died
patient states that he or she is dying
patient requests family visit to settle "unfinished
business" and tie up "loose ends"
inability to heal or recover from wounds or infections
increased swelling (edema) of either the extremities or
the entire body
CASE STUDY
A dying patient and a 4th year medical student
 Read the case study and make a common discussion
about the failures.
 What should be done? Answer the questions.
WHAT ARE PATIENTS THE MOST AFRAID
OF? (HEGEDŰS, K.)
Gynaecologycal ocology (N=52)
 How the family will accept their state (11)
 New surgery, pain, bleeding (7)
 Getting worse (4)
 Death (4)
 What is going to happen as they arrive home (3)
 Future (3)
 Defencelessness (2)
 Healing or not (2)
 Metastasis (1)
Causes of fear in people with
life threatening illness
•
Fear of separation from loved people, homes, jobs etc.
•
Fear of becoming a burden to others
•
Fear of losing control
•
Fear from dependentce
•
Fear of pain or other worsening symptoms
•
Fear of being unable to complete life tasks or responsibilities
•
Fear of dying
•
Fear of being dead
•
Fear of the fears of others (reflected fear)
Losses of patients with life
threatening illness
•
Loss of security
•
Loss of physical functions
•
Loss of body image
•
Loss of power or strength
•
Loss independence
•
Loss of self esteem
•
Loss of the respect of others
•
Loss of future
CONDITIONS OF A „GOOD DEATH” (BLOCK, 2001)
Optimalization od physical comfort, minimalizing
pain and physical discomfort (it does not cease the
interpersonal and psychological crisis)
 Maintanence and strengthening relationships (what
shall be talked over)
 Finding a meaning in personal life and death
 Maintaing sense of personal continuity (if its any
possible)
 Maintaing the sense of control
 Facing death and preparation

PRACTICE – ACTION PLAN
Work in 3 groups
 Make an action plan for a case of noticing
certain fatal diangosis or terminal stage
 What professionals, members (even family) would
you involve?
 Which concrete steps would you make?
 How would you try to give opportunity for a better
death?

SIGNS OF THE ACTIVE PHASE OF DYING
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inability to arouse patient at all (coma) or, ability to only arouse
patient with great effort but patient quickly returns to severely
unresponsive state (semi-coma)
severe agitation in patient, hallucinations, acting "crazy" and not
in patient's normal manner or personality
much longer periods of pausing in the breathing (apnea)
dramatic changes in the breathing pattern including apnea, but
also including very rapid breathing or cyclic changes in the
patterns of breathing (such as slow progressing to very fast and
then slow again, or shallow progressing to very deep breathing
while also changing rate of breathing to very fast and then slow)
other very abnormal breathing patterns
severely increased respiratory congestion or fluid buildup in
lungs
inability to swallow any fluids at all (not taking any food by
mouth voluntarily as well)
patient states that he or she is going to die
SIGNS OF THE ACTIVE PHASE OF DYING
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patient breathing through wide open mouth continuously and no
longer can speak even if awake
urinary or bowel incontinence in a patient who was not incontinent
before
marked decrease in urine output and darkening color of urine or
very abnormal colors (such as red or brown)
blood pressure dropping dramatically from patient's normal blood
pressure range (more than a 20 or 30 point drop)
systolic blood pressure below 70, diastolic blood pressure below 50
patient's extremities (such as hands, arms, feet and legs) feel very
cold to touch
patient complains that his or her legs/feet are numb and cannot be
felt at all
cyanosis, or a bluish or purple coloring to the patients arms and legs,
especially the feet and hands)
patient's body is held in rigid unchanging position
jaw drop; the patient's jaw is no longer held straight and may drop to
the side their head is lying towards
KÜBLER – ROSS:
STAGES OF DYING (1969)
VIDEO THE STAGES DYING
1. Denial — One of the first reactions is Denial, wherein the survivor imagines a
false, preferable reality.
2. Anger — When the individual recognizes that denial cannot continue, it
becomes frustrated, especially at proximate individuals. Certain psychological
responses of a person undergoing this phase would be: "Why me? It's not fair!";
"How can this happen to me?"; '"Who is to blame?"; "Why would God let this
happen?".
3. Bargaining — The third stage involves the hope that the individual can avoid
a cause of grief. Usually, the negotiation for an extended life is made with a
higher power in exchange for a reformed lifestyle. Other times, they will use
anything valuable against another human agency to extend or prolong the life.
People facing less serious trauma can bargain or seek compromise.
4. Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon
so what's the point?"; "I miss my loved one, why go on? The individual becomes
saddened by the certainty of death. In this state, the individual may become
silent, refuse visitors and spend much of the time mournful and sullen.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare
for it.„ Individuals embrace mortality or inevitable future, or that of a loved
one, or other tragic event. People dying may precede the survivors in this
state, which typically comes with a calm, retrospective view for the individual,
and a stable condition of emotions.
VIDEO – KÜBLER-ROSS IS SPEAKING TO A
DYING PATIENT
How would you desribe the patient’s state? What
could she expereince?
 How did she approach to the patient?
 What shall we learn from her?
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Always remember that your loved one can
often hear you even up till the very end,
even though he or she cannot respond by
speaking. Your loving presence at the
bedside can be a great expression of your
love for your loved one and help him to feel
calmer and more at peace at the time of
death
GRIEVING A LOST AMOROUS RELATIONSHIP
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Denial: The person left behind is unable to admit that the
relationship is over. He/she may continue to seek the
former partner's attention.
Anger: The partner left behind may blame the departing
partner, or him/herself.
Bargaining: The partner left behind may plead with a
departing partner that the stimulus that provoked the
breakup shall not be repeated. Example: "I can change.
Please give me a chance." Alternatively, he/she may
attempt to renegotiate the terms of the relationship.
Depression: The partner left behind might feel
discouraged that his or her bargaining plea did not
convince the former partner to stay.
Acceptance: Lastly, the partner abandons all efforts
toward renewal of the relationship.
CHILDREN’S CONCEPT OF DEATH
2-5-years: „animismus”:
 Dead people can move, think, talk, and even come
back, when they’re gone -> death is reversible.
 They wit for the dead one to come back. This
expectation is even stronger, when they are not
informed properly.
5-9-years: „personification”:
 Death is a person that takes people away, but
miracles can help.
 Death is reversible.
 Fear from death depends from the child’s fantasies,
family stories, films and how they imagine death
CHILDREN’S CONCEPT OF DEATH
From 9 years on:
 More realistic, irreversible picture about death
 Gref is similar to adults, but depends on family
traditions
 Trying to help the mourning parent to rebuild
security and the balance of the attachment figure
 They can stick into this supprting role
 Physical and psychological symptoms can show
the lingered grief
GRIEF & MOURNING
MOURNING

Psychological process that leads to eventual
resolution of bereavement – restore ability to
enjoy life after any serious loss.
Grief
 Protest
 Despair
 Detachment

GRIEF AND MOURNING
Normal:
Somatic Distress
Preoccupation with
deceased
Guilt
Hostility
Loss of conduct
Within 4-6 weeks
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THE 6 PHASES MODEL
OF GRIEF AND MOURNING
1. Anticipiation
Anticipating the loss before the actual death –
soetimes it helps to tolerate the death, sometimes
the underlying emotiens prevent it.
2. Shock
 Strong reaction for the death, sometimes denial
 Some minutes – 1-2 days (unexpected death)
3. Controlled phase
 Management of everydays after death, funeral
etc.
 Depersonalization
-> the funeral increases the awareness, and gives
possibility for peel off from the lost one
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A 3 PHASES MODEL
1. Protest:

Spontaneous reactions of
disbelief focused on the deceased
2. Despair:
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Intuitive realization that deceased
person is indeed lost
3. Detachment:

Emotions that previously focused on
deceased reoriented toward other people
and activities
THE PHASES OF GRIEF AND MOURNING
4. Awareness
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Emotions are strong, sense of presence of the
deceased person
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Thinking: as a part of the self would be dead.
Negeativismus, sometimes magical thinking
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Behaviour: inability for decisions, ambivlence,
seeken and avoiding
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Relationships: withdrawal
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Bodily symptoms
THE PHASES OF GRIEF AND MOURNING
5. „Working period”
 Conscious thinking
 Rational acception
 Good memories beside the painful ones
 Anniversaries, feasts, holidays can be hard
6. Adaptation
 New balance, the person is able to normal life
 The lost one and the memories are parts of the
self
 Self-integration, lack of guilt
 New social contacts, future plans
MOURNING IS DETERMNED BY
GRIEF AND MOUNING IS DETERMINED BY
Relationship with the lost one (intensity,
ambivalence, anger etc.)
 Way of death
 Age
 Gender
 Personality of the mourner
 Previous losses
 Previous illnesses (eg. depression)
 Actual psychic status
 Culture and religious believes
 Social contacts
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HOW WOULD / COULD YOU HELP THE
MOURNES AS A DOCTOR?
PATHOLOGICAL GRIEF
Types:
 Timing
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Intensity
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Chronic grief (more than 1 year)
Delayed greif
bagatellisation
Hypertrofic (too strong)
The absence of grief (rituals!!)
From and symptoms
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Dystorted grief
Dysfunctional denial
Manic escape („merry widow”)
Dysfunctional hostility
Clinical depression
The doctor’s grief
• It is a sign of maturity to know when to ask
for help
• A wise doctor will have worked-out systems
of support to meet a range of needs.
SUMMARY
We should never assume that we know what
people with terminal illness fear from
 Most patients will benefit if we make it secure enough
for them to share their fears
 Fear can aggravate pain, and pain fear
 Patients with life threatening illnesses experience a
series of losses as the illness progresses
 Grief is natural and needs to be acknowledged
and expressed
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THE „PALM EXERCISE”
Draw the outline of your palm
 In each finger write down one thing that
characterizes you
 Mark those characteristics with a plus that you
think will help dealing with dying patients
 In the middle of the palm write all those things that
you need to acquire or further develop in order to
deal with death and dying
 In the wrist area write all those things and persons
that you think may help you in it
 Discussion in small groups.

COMMUNICATING ABOUT DEATH AND ITS
POSSIBILITY
3 COMMUNICATION MODELS OF BAD NEWS
1. Non-disclosure model
 „Patients don’t want to hear + they must be protected”
2. Full disclosure model
 „Eveyone wants to know about their health + patients
have the right to know” (but not the obligation!)
3. Individualised disclosure model
 Differences in the need of information to cope with
 Information must be shared gradually, adjusted to the
nature of bad news
THE
S.P.I.K.E.S MODEL
1. Setting up: prepare for the meeting – information, time,
material
2. Patient’s perception: What does the patient know? What state
is he/she in? Ask to sit down, opening question: „How are you?
Have you talked with the previous doctor?”
3. Invitation to break news: Find out patient’s need of
information: „Some want to know everything, others want only
outlines. What would you prefer?”
4. Knowledge: Deliver facts of information: comprehensibility brief and stay at the point – disclose it gradually - two-way
communication - inviting questions - avoid semantic confusion
5. Emotions: react to emotions – emphatic questions and feedback,
properly handling crying, discuss possible treatment or support
6. Summary and strategy: summarize details, warn about the
probalbe emotional reactions, discuss future actions
OTHER TASKS, PRINCIPLES
Doctors must record: who was present, what was said
+ rections, support mentioned + necessary actions
 Other treatment members must be informed about the
conversation!
 Circumstances of the question
 Clarify the background of the question (Are you asking,
because..?)
 Refer to the previous conversations
 Honesty
 Admit areas of uncerainty
 Offer hope
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VIDEO - TELLING BAD NEWS – DONE WELL
SCRIPT PRACTICE – THE SPIKES MODEL
COMMUNICATING BAD NEWS
1.
2.
3.
4.
5.
6.
Setting - prepare
Perception – what they know
Invitation – need of informations
Knowledge – facts of information
Explore emotions and empathise
Strategy and summary
Thank you for your kind attention!
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