64
A Manual For The End-of-Life Doula
A Manual For
The
End-of-Life Doula
2
Purpose
This book is intended as an aid to those
Child Life Specialists whose work
includes end-of-life care. This book is
designed to present a different
perspective on the work you do and offer
practical information that can be used in
your field.
3
Table of Contents
Chapter 1 The Doula…………………………….4
Chapter 2 Developmental Stages………………..9
Chapter 3 Death & Spirituality Concepts...……16
Chapter 4 Interventions/Creative Expression… 20
Chapter 5 Self Care for the Doula……………...25
Chapter 6 Communication Skills……………….29
Chapter 7 Influence of Culture & Religion…….33
Chapter 8 Grief Theorist Elizabeth Kubler-Ross 44
Chapter 9 Funeral Planning…………………….49
Chapter 10 Resources………………….……….52
Chapter 11 Bibliography……………………….59
4
Chapter One
The Doula
5
The Birthing vs. End-of-Life Doula
Traditionally, the term Doula refers to a woman who
helps women and families through labor and
childbirth. Studies have been conducted that show the
efficacy of having a trained Doula present during
labor.
Benefits of Having a Trained Doula
50% reduction in the cesarean rate
25% shorter labor
60% reduction in epidural requests
40% reduction in oxytocin use
30% reduction in analgesia use
40% reduction in forceps delivery
(http://www.childbirth.org/articles)
The term Doula has been adopted by Hospice and
End-of-Life care to describe specially trained
Hospice volunteers. For example, at St. Mary's
Healthcare System for Children, an End-of-Life
Doula program has been implemented with the
following results:
A doula who visits a child spends an average of 43.98
hours/inpatient
89 % of contacts are with the child, 23.4 % involve
family member
91.5 % of time spent includes providing a supportive
presence, 30.9 % included talking to the child, 23.4 %
engaging in specific activity w/child, 20.2 % involve
conversing with families, and 11.7 % include talking
with staff (www.inside.nachri.org)
6
Functions of a Birthing Doula
Recognizes birth as a key life experience that the
mother will remember all her life.
Understands the physiology of birth and the
emotional needs of a woman in labor.
Assists the woman and her partner in preparing for
and carrying out their plans for the birth.
Stays by the side of the laboring woman
throughout the entire labor.
Provides emotional support, physical comfort
measures, an objective viewpoint and assistance to
the woman in getting the information she needs to
make good decisions.
Facilitates communication between the laboring
woman, her partner and clinical care providers.
Perceives her role as one who nurtures and protects
the woman's memory of her birth experience.
7
Functions of an End-of-Life
Doula
Recognizes death as a key experience that the
family will remember all of their lives.
Understands the physiology of dying and the
emotional needs of a dying child and their family.
Assists the child and family in preparing for death.
Assist in funeral preparations.
Provides emotional support, physical comfort
measures, an objective viewpoint and assistance to
the family in getting the information they need to
make good decisions.
Facilitates communication between the child,
family, and clinical care providers.
Perceives role as one who nurtures and protects the
family’s memory of the end-of-life experience.
8
Why Do We Need End-of-Life Doulas?
Close to 400,000 children in the Unites States
spend each day living with a chronic and life-
threatening illness.
Each year, approximately 53,000 American
children and infants (0-19 years of age) die.
Of these 53, 000 only about 5,0000 receive
hospice care and this care is usually only for a
very brief period of time. (Children’s International Project on Palliative/Hospice Services [ChiPPS], 2001)
Out of the 1,400 hospices in the United States in
1983, only four accepted children.
By 2006, there were over 450 hospice, palliative
or home care programs for dying children.
Melissa Gilbert, the President of the Board of
Directors for Children's Hospice and Palliative
Care Coalition says the following about children’s
hospice:
...the words 'children' and 'hospice' shouldn't go
together, but they do. Children should be
allowed to pass on with grace and dignity.
Children's Hospice addresses the needs of the
entire family...mind, body and spirit...embracing
healing even when there is no cure.
9
Chapter 2
Developmental
Stages
Of
Children and Teens
10
Piaget’s Stages of Cognitive
Development (http://www.childdevelopmentinfo.com/development/piaget.shtml)
Sensory Motor Period (0 - 24 months)
Reflexive Stage (0-2 months)
Simple reflex activity such as grasping, sucking.
Primary Circular Reactions (2-4 months)
Reflexive behaviors in stereotyped repetition such as opening and closing
fingers repetitively.
Secondary Circular Reactions (4-8 months)
Repetition of change actions to reproduce interesting consequences such as
kicking one's feet to more a mobile suspended over the crib.
Coordination of Secondary Reactions (8-12 months)
Responses become coordinated into more complex sequences. Actions take
on an "intentional" character such as the infant reaches behind a screen to
obtain a hidden object.
Tertiary Circular Reactions (12-18 months)
Discovery of new ways to produce the same consequence or obtain the same
goal such as the infant may pull a pillow toward him in an attempt to get a
toy resting on it.
Invention of New Means Through Mental Combination (18-24 months)
Evidence of an internal representational system. Symbolizing the problem-
solving sequence before actually responding. Deferred imitation.
11
The Preoperational Period (2-7 years)
Preoperational Phase (2-4 years)
Increased use of verbal representation but speech is egocentric. The
beginnings of symbolic rather than simple motor play. Transductive
reasoning. Can think about something without the object being present by
use of language.
Intuitive Phase (4-7 years)
Speech becomes more social, less egocentric. The child has an intuitive
grasp of logical concepts in some areas. However, there is still a tendency to
focus attention on one aspect of an object while ignoring others.
Concepts formed are crude and irreversible. Easy to believe in magical
increase, decrease, disappearance. Reality not firm. Perceptions dominate
judgment.
In moral-ethical realm, the child is not able to show principles underlying
best behavior. Rules of a game not develop, only uses simple do's and don'ts
imposed by authority.
12
Period of Concrete Operations (7-11 years)
Evidence for organized, logical thought. There is the ability to perform
multiple classification tasks, order objects in a logical sequence, and
comprehend the principle of conservation. Thinking becomes less
transductive and less egocentric. The child is capable of concrete problem
solving.
Some reversibility now possible (quantities moved can be restored such as in
arithmetic:
3+4 = 7 and 7-4 = 3, etc.)
Class logic-finding bases to sort unlike objects into logical groups where
previously it was on superficial perceived attribute such as color.
Categorical labels such as "number" or animal" now available.
Period of Formal Operations (11-15 years)
Thought becomes more abstract, incorporating the principles of formal
logic. The ability to generate abstract propositions, multiple hypotheses and
their possible outcomes is evident. Thinking becomes less tied to concrete
reality.
Formal logical systems can be acquired. Can handle proportions, algebraic
manipulation, & other purely abstract processes.
13
Erikson's Eight Stages of Development
1. Learning Basic Trust Versus Basic Mistrust (Hope) 1-2 yrs old
The child, well - handled, nurtured, and loved, develops trust and security
and a basic optimism. Badly handled, he becomes insecure and mistrustful.
2. Learning Autonomy Versus Shame (Will) 18 months to 4 yrs
The "well - parented" child emerges from this stage sure of himself, elated
with his newfound control, and proud rather than ashamed. Autonomy is
not, however, entirely synonymous with assured self - possession, initiative,
and independence but, at least for children in the early part of this
psychosocial crisis, includes stormy self - will, tantrums, stubbornness, and
negativism.
3. Learning Initiative Versus Guilt (Purpose) Pre-School Years
The healthily developing child learns: (1) to imagine, to broaden his skills
through active play of all sorts, including fantasy (2) to cooperate with
others (3) to lead as well as to follow. Immobilized by guilt, he is: (1)
fearful (2) hangs on the fringes of groups (3) continues to depend unduly on
adults and (4) is restricted both in the development of play skills and in
imagination.
4. Industry Versus Inferiority (Competence) School Age/Middle School
Here the child learns to master the more formal skills of life: (1) relating
with peers according to rules (2) progressing from free play to play that may
be elaborately structured by rules and may demand formal teamwork, such
as baseball and (3) mastering social studies, reading, arithmetic. The child
who, because of his successive and successful resolutions of earlier
psychosocial crisis, is trusting, autonomous, and full of initiative will learn
easily enough to be industrious. However, the mistrusting child will doubt
the future. The shame - and guilt-filled child will experience defeat and
inferiority.
14
5. Learning Identity Versus Identity Diffusion (Fidelity) ~13-20 yrs
Now an adolescent, learns how to answer satisfactorily and happily the
question of "Who am I?" But even the best - adjusted of adolescents
experiences some role identity diffusion: most boys and probably most girls
experiment with minor delinquency; rebellion flourishes; self - doubts flood
the youngster, and so on.
He comes to experiment with different - usually constructive - roles rather
than adopting a "negative identity" (such as delinquency). He actually
anticipates achievement, and achieves, rather than being "paralyzed" by
feelings of inferiority or by an inadequate time perspective.
In later adolescence, clear sexual identity - manhood or womanhood - is
established. The adolescent seeks leadership (someone to inspire him), and
gradually develops a set of ideals (socially congruent and desirable, in the
case of the successful adolescent).
6. Learning Intimacy Versus Isolation (Love)
The successful young adult, for the first time, can experience true intimacy -
the sort of intimacy that makes possible good marriage or a genuine and
enduring friendship.
7. Learning Generativity Versus Self-Absorption (Care)
In adulthood, the psychosocial crisis demands generativity, both in the sense
of marriage and parenthood, and in the sense of working productively and
creatively.
8. Integrity Versus Despair (Wisdom)
If the other seven psychosocial crisis have been successfully resolved, the
mature adult develops the peak of adjustment; integrity. He trusts, he is
independent and dares the new. He works hard, has found a well - defined
role in life, and has developed a self-concept with which he is happy. He
can be intimate without strain, guilt, regret, or lack of realism; and he is
proud of what he creates - his children, his work, or his hobbies. If one or
more of the earlier psychosocial crises have not been resolved, he may view
himself and his life with disgust and despair.
(http://www.childdevelopmentinfo.com/development/erickson.shtml)
15
Maslow’s Hierarchy of Needs
1) Physiological: hunger, thirst, bodily comforts, etc.;
2) Safety/security: out of danger;
3) Belonginess and Love: affiliate with others, be accepted; and
4) Esteem: to achieve, be competent, gain approval and
recognition.
5) Cognitive: to know, to understand, and explore;
6) Aesthetic: symmetry, order, and beauty;
7) Self-actualization: to find self-fulfillment and realize one's
potential; and
8) Self-transcendence: to connect to something beyond the ego
or to help others find self-fulfillment and realize their potential.
(http://chiron.valdosta.edu/whuitt/col/regsys/maslow.html)
16
Chapter Three
Children’s
Death Concepts &
Spiritual
Development
17
Death Concept: Irreversibility (dead things will not live
again)
Questions asked:
How long do you stay dead?
When is my (dead ___) coming back?
Can I “un-dead” someone?
Can you get alive again when you are dead?
Implications of incomplete understanding:
Prevents detachment of personal ties, the first step in
Mourning
Death Concept: Finality/non-functionality (all life-
defining functions end at death)
Questions asked:
What do you do when you are dead?
Can you see when you are dead?
How do you eat underground?
Do dead people get sad?
Implications of incomplete understanding:
Preoccupation with the potential for physical suffering
of the dead person
18
Death Concept: Universality (all living things die)
Questions suggestive of incomplete understanding:
Does everyone die?
Do children die?
Do I have to die?
When will I die?
Implications of incomplete understanding:
May view death as punishment for actions or thoughts
of child or the dead person.
Death Concept: Causality (realistic understanding of
the causes of death)
Questions suggestive of incomplete understanding:
Why do people die?
Do people die because they are bad?
Why did ______ die?
Can I wish someone dead?
Implications of incomplete understanding:
May lead to guilt and shame
Excessive guilt.
19
Ages Death
Concepts
Spiritual
Development
Interventions
0-2 None Faith reflects trust and
hope in others.
Need for sense of self
worth & love.
Maximum physical
comfort/simple
communication.
Familiar persons &
transitional objects
(favorite toys).
Be consistent.
2-6 Death is
temporary,
reversible like
sleep, not
personalized, &
can be caused by
thoughts
Faith is magical and
imaginative.
Participation in ritual
becomes important.
Need for courage.
Minimize separation
from parents.
Correct perceptions of
illness as punishment.
Evaluate for an
assuage of guilt.
Use precise language
(dying, dead).
7-12 Death can be
personal.
Interest in
physiology of
death.
Faith is about right and
wrong.
May accept external
interpretations as the
truth.
Connection of ritual
with personal identity.
Evaluate fears of
abandonment.
Be truthful.
Provide concrete
details if requested.
Support control and
mastery.
Maintain peer access.
Allow participation in
decision-making.
12-18 Exploration of
non-physical
explanations of
death
Begin to accept
internal interpretations
as the truth.
Evolution of
relationship with God
or higher power.
Search for meaning,
purpose, hope and
value of life
Reinforce self-esteem.
Allow expression of
strong feelings.
Allow privacy.
Promote
independence.
Promote peer access.
Be truthful.
Allow participation in
decision-making.
(Himelstein, 2006)
20
Chapter Four
Interventions
21
15 TIPS TO HELP EASE INFANT/TODDLER GRIEF
Place your child on your lap and play peek-a-boo
Place your child on your lap and help them to find their
eyes, nose, ears, and mouth
Hold your child in your lap and sing a lullaby
Read the book Wiggle Your Toes. This is an interactive
book that asks the child to play with different parts of
their body.
Place your child on his/her tummy, lay on the floor with
him/her and share a board book with them.
Talk to your child as you change him/her
Make bathing fun by creating a bath time song
Play different kinds of music
Play activities outdoors on nice days
Be consistent so they know what to expect
Give them soft toys to hold, grasp, and feel
Rock, sway, and swing your baby
22
If You’re Angry and You Know It Parade
Developmental Age: Preschooler
Area: Feelings, Anger / Dramatic Arts / Music Therapy
Materials:
Song If You’re Angry and You Know It, by Jack Hartman (http://www.songsforteaching.com/jackhartmann/ifyoureangryandyouknowit.htm)
Musical Instruments
Instructions:
Play the song, teaching the words to the children
Each child gets a musical instrument
We will then walk around the area in a parade, singing
and playing instruments
Importance
Teaches child to recognize and manage anger
Empowers child to be in charge of his/her feelings
Develops rhythm and coordination
23
Double-Dip Feelings
Developmental Age Group: School Age
Area: Feelings, Anger / Dramatic Arts / Bibliotherapy
Materials: The Book “Double-Dip Feelings”
Instructions:
Read a story from the above book to explore feelings
Have the children act out parts of the book where
various feelings are expressed.
Discuss feelings during reading and performances
Importance:
Help the child release feelings such as stress, anger,
and frustration
Integrate the information from the book through
kinesthetic activities
24
Feelings Charades
Developmental Age Group: Teens
Area: Feelings / Dramatic Arts
Materials:
Numbered pieces of paper, each with a different emotion
listed
Bag, hat, or jar to place the slips of paper in
Instructions:
One teen will pick a slip of paper with a feeling listed on
it
The teen will act out the feeling by the use of pantomime
No sounds can come out of the mouth of the player that
is up
Importance:
Help the child release stress, anger, and frustration
Use of imagination
Stimulates growth of child
Empower child
25
Chapter Five
Self-Care Tips
for the
End-of-Life Doula
26
Bubble Bath Therapy (http://www.ehow.com/how_3615_bubble-bath.html)
Materials Needed:
CD/MP3 Player
Relaxing Music
Candles
Bath Oils
Bubble Bath/Bath Bomb
Tips for the Tub
1. Turn off the phone.
2. Lock the door.
3. Turn on relaxing Music
4. Light Candles
5. Stop the drain in the tub.
6. Turn on the water/adjust the temperature.
7. Pour in bath oil. Lavender scent relieves stress.
8. Pour in bubble bath.
9. Allow the bathtub to fill with water and suds.
10. Turn off the water when the tub has filled
11. Slowly enter the bath water feet first/
12. Breathe deeply and enjoy.
27
Morning Pages (Excerpt From The Artist’s Way)
Materials Needed:
8 ½ X 11 Journal
A Favorite Pen
Purpose: To release the mental debris that gets in
the way of our creative potential.
Instructions:
Each morning take your favorite pen and your
journal to a place where you can be alone.
Write 3 full pages (one-side) every day
Write whatever comes to your mind, try not to
edit
The pages are not to be shown to anyone else
The pages are not to be reread or mulled over
28
Exercise (http://www.anselm.edu/internet/psych/theses/2004/hall/webpage/exercise.gif)
Types of Exercise: Aerobic Exercise
Strength Training
Flexibility Training
Benefits: Releases endorphins that increase peace and happiness
Improves quality of sleep
Improve self-esteem
Gives a sense of accomplishment
Exercising can help you look better
Decreases risk of developing certain diseases, including
type 2 diabetes and high blood pressure.
Exercise can help a person age well
29
Nature Walks Nature has been found to be a powerful de-
stressor.
Nature walks give our over-stimulated
senses a chance to rest, and provides a
great opportunity to get back in touch with
our bodies and the life round us.
Experiences in nature help people reawaken
their senses and accept various changes in
life.
Measurable benefits include:
Improvements in personal development
Physical Health/Healing
Self-sufficiency
Psychological well-being
Spiritual connectedness
http://www.casapalmera.com/articles/nature-walk-therapy/
30
Chapter Six
Communication Skills
31
Talking w/ Patients & Siblings
Be Caring, Professional, &
Approachable
Use Developmentally Appropriate
Language
Introduce Self & Explain Role
Ask Open-Ended Questions
Listen
Give Choices
Follow Through on Promises
Be Aware of Body Language, Tone of
Voice, and Word Selection
Be An Advocate
Be Available & Visible
32
Talking to Adult Family Members
Be Non-Judgmental
Provide Resources
Avoid Jargon
Respect Family’s Decision Making
Be Aware of Body Language, Tone
of Voice, & Word Selection
Encourage Communication W/Staff
Be Professional, Caring &
Approachable
Introduce Yourself & Explain Your
Role
Ask Open-Ended Questions
Listen
33
Talking With Medical Staff
Be Approachable & Visible
Respect/Value Your Contribution
Respect/Value Contribution of
Others
Promote Teamwork
Communicate
Address questions/concerns
Use Conflict Resolution Skills
Offer Constructive Feedback
Listen
Chart & Document
34
Chapter Seven
Death & Dying
Beliefs of Various
Religions
35
Buddhism
Buddhists believe that the dead are reborn at higher or lower
planes of existence; depending on merits they have built up
in this life and former lives.
To enter death in a positive state of mind in the company of
monks and family members can contribute to rebirth on a
higher level.
In Buddhist philosophy, the word 'samsara' refers to a state
where nothing remains the same - everything is either
developing or decaying.
Samsara has three aspects for Buddhists: suffering, change
and the lack of an eternal self.
This aspect of change throughout all of ones life helps people
to accept that there is no eternal 'essence' in us, and the
processes of change continue also after our physical death.
When a human understands samsara completely, it is as if a
flame has been extinguished. One has achieved nirvana. This
is the goal of all Buddhists.
By achieving nirvana, a cycle is broken, and the spirit is not
reborn again after death.
36
After Death
Buddhism has no dogmatic rules for what kind of care the
body of the dead person should be given, aside that the
process should be handled in a worthy and respectful way.
The deceased may be cremated or buried, depending on the
wishes of the family.
White clothing and white headbands are symbols of
mourning during the ceremony.
A large photograph of the dead person is displayed at a
memorial altar beside the Buddha figure near the entrance to
the temples ritual area. Flowers, candles and incense are all
placed at the altar, together with offerings of fruit, cookies,
soup and rice.
The temples spiritual leader recites from holy texts - sutras -
that can help the dead. Other monks play wood blocks, bells,
gongs and drums.
The relatives of the dead person pray in front of where the
photograph is displayed.
Ringing of a large bell further inside of the temple helps to
summon the spirit of the deceased.
The spirit then receives assistance from the living through
instructions on how to orient itself in the spirit world. The
ritual must be done so early after death as possible to hinder
that the spirit becomes confused in its new existence, and
loses its ability to find its way. (http://www.harpweb.org.uk/external.php?url=http://www.ukm.uio.no/utstillinger/far
vel/buddhism.html&harpid=579)
37
Hinduism
Hindus believe that humans are born again and again
according to their karma, until they finally gain respite -
moksha.
By living a life of value without sin, it is possible to come
closer to moksha, and perhaps be reborn in a higher form in
the next life.
To drink or bathe in water from the holy river Ganges
contributes to rinsing oneself from sin.
When death approaches, the sick person will be lifted out of
their bed and laid on the floor with their head towards the north.
Relatives gather around the dying person, dip a leaf of sweet
basil in water from the Ganges or milk, and place this on the
lips of the dying person while they sing holy songs and read
holy texts.
To enter death with all of ones senses alive is considered
ideal, and many Hindus will refrain from taking medication
when they feel that their time is up.
38
After Death
The dead person is ritually washed by family members, and
wrapped in white cloth on the floor, but with the face
uncovered. To die on the ground shows respect for the earth which humans
have come from, and shall also help the soul to free itself from
the body after death.
The dead person is washed at home, anointed with salve of
sandalwood, kum kum powder and vibuthi, and clothed in white.
The body is laid in a coffin and covered with flowers before it is
driven to the crematorium.
In north Indian tradition, three bowls of barley flour are now
prepared. The first bowl is placed on the head of the deceased
before being carried into the crematorium. The second is placed
on the chest during the procession from the hearse. The third is
placed on the stomach after arriving in the crematorium.
In the crematorium, a small candle or oil lamp (diwali lamp) is
lit, which the main mourner holds in his hand while carrying a
container of water on his shoulder.
He circles the dead person three times, and a hole is made in the
container each time he goes around.
The coffin is then moved to the cremation room. The main
mourner lights a candle on top of the coffin, which symbolically
lights the cremation oven.
After cremation, the ashes are sent in an urn to India for
spreading in the holy river Ganges.
39
The death ritual lasts 12 days.
During this period, the mourners are ritually unclean. They
do not go to the temple, and must cover all religious pictures
and figures that they have in the house.
Family members sleep on the floor, and eat only vegetarian
food.
Every morning for 11 days, the eldest son - as main mourner
- receives tutelage in the ritual from the priest.
On the twelfth day, possessions of the eldest son are given to
charity.
Each month during the first year after the death, a pinda rice-
ball and bowl of water are offered in memory of the dead
person.
A widow will erase her marriage mark (sindoor) and clothe
herself in white the first year after her husband's death.
Sons will hold a memorial service each year on the day of their
father's death as long as they are alive.
(http://www.harpweb.org.uk/external.php?url=http://www.ukm.uio.no/utstillinger/farvel/
hinduism.html&harpid=580)
40
Judaism
Since humans are formed in the image of God, a dead body
should not be changed.
The body shall return to the earth it came from. Jewish tradition
is therefore against cremation, organ donation and chemical
preservation of the body.
The body is washed by ritual experts and is laid in a simple,
unpainted wooden casket and buried as soon as possible.
When relatives hear of the death of one of their close ones, they
rip their outer clothing from the neckline down to the heart.
The torn clothing symbolizes mourning, that the hearts of the
family are torn.
The tear symbolizes also that our bodies are like an outer
garment for the soul: Death can tear what is external, while the
eternal soul lives on.
41
After Death
Jewish funeral ceremonies are simple, consisting of Kaddish
prayer, psalms and a memorial speech. Kaddish is a praising of
God representing ideas of continuity.
The procession normally stops 10 times on the way from the
funeral chapel to the grave - once for each strophe of the psalm
that is sung.
Flowers are not common at a Jewish burial, but donations are
often given to charity in memory of the deceased.
At the grave, the male mourners cast three shovels of earth on
the casket. When the mourners leave the gravesite, they wash
their hands to symbolically dispel the spirits of uncleanness that
accompany death.
There are several periods of mourning in the time after the
burial.
Shiva lasts one week after the burial. During the first three days,
the family mourns alone, sitting on low chairs. During the last
four days, they are visited by friends who bring gifts of food and
express their sympathy.
Sheloshim lasts for three weeks after shiva. The family doesn't
cut their hair or shave, but otherwise can go about their normal
business. Kaddish prayer is recited each day.
42
During the next ten months, Kaddish prayer is recited every
Sabbath in memory of the deceased.
Exactly one year after death (yahrzeit), a grave monument is
unveiled. The family meets at the grave and places little stones
on the top of the gravestone as signs of respect.
(http://www.harpweb.org.uk/external.php?url=http://www.ukm.uio.no/utstillinger/f
arvel/jew.html&harpid=577)
43
Islam
Death is likened to sleep in Islam
Life is seen as an opportunity to prepare for death
Reflecting on death is an important part of a Muslims daily
life.
Attending any Muslims funeral, whether known or not, is
highly encouraged.
Muslims accept death as “ones appointed time”
When Muslims survive a near death experience they may
remark “my appointed time did not come yet.”
Muslims see death as a transition to the other side.
Islam is seen as the vehicle that will take one safely there.
It is only in paradise that the believer finds ultimate peace
and happiness.
44
AFTER DEATH
After death, washing, perfuming, and shrouding prepare the
body.
Funeral prayer is performed
Body is buried in graveyard w/o a coffin
Instructions are given to inform deceased that s/he has died,
is being buried, and that 2 angels will ask them 3 questions
that will determine their place in the afterlife.
After this the soul sleeps until a first blast by an angel of God
that signifies the end of the world and death of all on Earth.
During a second blast all souls are resurrected. The Day of
Judgment follows.
It is believed that the prophet Mohammed alone can
intercede.
Each soul is judged based on their beliefs and actions.
A person will be given a book in either the right or left hand.
The right hand means that they passed judgment and the left
hand means that they failed and are condemned to hell.
45
Chapter Eight
Grief Theorist
Elizabeth Kubler-
Ross
46
ELIZABETH KUBLER ROSS
Considered the founder of the Death with Dignity movement
Swiss Born psychiatrist
Born July 8, 1926 and died August 24, 2004
Graduated from the University of Zurich medical school in
1957
Moved to New York in 1958
Forced medical professionals to face death and dying by
giving lectures about terminally ill patients
Wrote over 20 books on the subject of dying
Published most famous book On Death and Dying in 1969
In 1983 published the book On Children and Death
Proposed the five stages of grief
47
FIVE STAGES OF GRIEF (www.wikipedia.com)
Elizabeth Kubler Ross originally developed the 5 stages of grief
as a model to help patients cope with death and bereavement
(www.wikipedia.com). These stages were not intended to be a
rigid series of steps, but rather a guideline to help understand
their personal grieving process. Some people may not
experience all of the steps and others may experience some
steps simultaneously or in varied order. The steps are as
follows:
DENIAL: You tell yourself that this isn’t happening and
that this can’t be happening to you or to your loved one(s).
ANGER: Anger comes as you begin to accept reality.
BARGAINING: Bargaining often comes before death.
You promise God anything to just have your loved one
survive
DEPRESSION: Depression is defined as “a mental state
characterized by a pessimistic sense of inadequacy and a
despondent lack of activity.” It may enter at any stage.
ACCEPTANCE: Death is accepted as an inevitable part
of life.
48
ADVICE TO BEREAVED PARENTS
(Excerpts from “On Children and Death”)
Don’t try to fake a smile or try to lie to child about your tears
Siblings should become part of care
Do best to maintain normalcy
Siblings should be encouraged, not forced, to go to wake or
funeral
Be good to yourself
Don’t expect grief to last forever or to end after a certain
amount of time
Go on doing what you always did, even if it seems
mechanical
Concentrate on your other children, your mate, your parents
Let go of the question, “Is there anything I could have done
differently?”
Get involved with groups for unwanted children and
teenagers.
49
Children Need Confidants
Children often have a pre-conscious awareness of their death
This awareness prepares the child to face the transition even
if grown-ups deny this
A small child may ask, “Am I going to die?”
Older children may write poetry or journal entries about
dying
Children need at least one person to confide in
Often they confide in an unexpected person such as a
cleaning woman or a nurses aide
Children often have deep talks and speak with wisdom
beyond their years
Few grown-ups know how many secrets are shared this way
As the Child Dies
Allow the family to be alone with the dying child
Allow (not force) all siblings to participate
Families may sing child’s favorite song, pray, or simply hold
hands during this time
The Funeral
Encourage (not force) siblings to go to wake or funeral
Siblings can be taken in before the adults visit
Some siblings want to touch the body
Some siblings bring a special object to place under the pillow
50
Chapter Nine
Funeral Planning
51
Practical Matters
o Death must be registered within 5 days
o If child died at home, notify doctor and/or
hospice
o If you have a spiritual advisor, you may wish
to contact them
o If you have a funeral director, notify them and
they will remove body
o If you are donating your child’s organs,
contact the donor transplant coordinator
o If you don’t have a funeral director, ask
hospital if they will keep body for you
o You will need to write a death notice and
obituary
o You or funeral director can place the press
notice by calling the local newspaper
52
Arranging a Service
o Can be religious or non-religious
o Non-Religious services can be in a
crematorium, community center, or home
o Consider allowing people the opportunity to
share memories
o Arrange a “memory table” that has
pictures/favorite items of your child
o Choose music that reflects your child’s
personality
o You may wish to record the funeral service
o You may wish to ask people to bring flowers
from their garden
o Consider a reception at the home of
family/friend
o Involve siblings/grandparents in planning
( www.partnershipforparents.org)
53
Chapter Ten
Resources
54
National Non-Profit Organizations
AFSP - American Foundation for Suicide prevention is dedicated
to advancing knowledge of suicide and the ability to prevent it.
Alive Alone - Designed to benefit bereaved parents whose only
child or all children have died by providing a self-help network
and newsletter to promote communication and healing.
BabySteps - Named after the baby steps that form the long and
difficult road to recovery from the loss of a child.
BPUSA - Bereaved Parents of the USA offers support, care, and
compassion for bereaved parents, siblings, and grandparents.
Center for Loss in Multiple Births - By and for parents who have
experienced the death of one or more children during a multiple
pregnancy, at birth, and through childhood.
Child Grief Education Association - The CGEA is a 501(C)(3)
nonprofit organization dedicated to serving the needs of grieving
children and families and to providing education and support to
those who serve them.
Children’s Hospice International - "CHI's ultimate goal is to so
ingrain the hospice concept into pediatrics that it isn't considered a
separate specialty, rather, an integral part of health care for
children and adolescents."
Childrens Memorial Garden - CMG's mission is to unite all U.S.
memorial gardens dedicated in memory of children through a
national registry and to offer families in sorrow multiple avenues
of healing and hope through Networking, Education, Awareness,
and Resources (N.E.A.R.).
55
Compassion Connection - Contains articles and readings for all
who have suffered a loss.
The Compassionate Friends - The mission of The Compassionate
Friends is to assist families toward the positive resolution of
grief following the death of a child of any age and to provide
information to help others be supportive.
Comfort Zone Camp - No charge nonprofit camp for siblings and
children (age 7-17) coping with the loss of a sibling or parent
The Dougy Center - The Dougy Center provides support in a safe
place where children, teens, young adults, and their families
grieving a death can share their experiences
www.goodgriefresources.com - Good Grief Resources connects
the bereaved and their caregivers with as many bereavement
support resources as possible in one efficient and easy-to-use
website directory.
griefHaven - griefHaven provides loving support, hope, and
hands-on tolls for those who have lost a child, brother or sister, or
grandchild, and also provides education to professionals and others
seeking to help bereaved family members rebuild their lives.
GRIEFNET.ORG - Griefnet offers e-mail support groups for the
bereaved including parents, siblings, and grandparents. It also
offers a wide variety of bereavement related content including a
comprehensive resource guide of bereavement organizations and a
sister website for bereaved children, KIDSAID.
GROWW - Grief Recovery Online offers wide variety of grief and
bereavement resources.
Hospice Foundation of America - Includes information about
hospice care and programs including bereavement support for
families using hospice.
56
MADD - Mothers Against Drunk Drivers has a mission to stop
drunk driving, support victims of violent crime, and prevent
underage drinking.
Make-A-Wish Foundation – “We grant the wishes of children with
life-threatening medical conditions to enrich the human experience
with hope, strength and joy.”
MISS - Mothers in Sympathy and Support provides emergency
support to families after the death of their baby or young child.
National SIDS Resource Center - provides information services
and technical assistance on sudden infant death syndrome (SIDS)
and related topics.
"Now I Lay Me Down to Sleep" - When a baby or infant has
died, Now I Lay Me Down to Sleep, through its nationwide
network of professional photographers, will arrange a tasteful
private sitting at the hospital with no charge for any services or
pictures.
Parents Of Murdered Children - provides support and assistance
to all survivors of homicide victims while working to create a
world free of murder.
SHARE Pregnancy and Infant Loss Support - SHARE's
mission is to serve those who are touched by the tragic death of a
baby through miscarriage, stillbirth, or newborn death.
SIDS Network - Sudden Infant Death Syndrome Network offers
latest information, as well as support, for those who have been
touched by the tragedy of SIDS/OID (other infant death).SOS -
Survivors of Suicide helps those who have lost a loved one to
suicide to resolve their grief and pain in their own personal way.
57
SUDC - Sudden Unexplained Death In Childhood Program offers
support, information, advocacy, and research opportunities for
those touched by the sudden and unexplained death of a child (over
12 months of age).
TLC - National Institute for Trauma and Loss in Children is
dedicated to helping traumatized children and families restore a
sense of safety and reduce the effects of trauma; information
available about trauma, resources, and training for professionals.
Twinless Twins - serves in support of twins (and all multiple
births) who suffer from the loss of companionship of their twin
through death, estrangement or in-utero loss.
Local Support Groups
Trinity Kids Care
2601 Airport Drive, Suite 230
Torrance, CA 90505
(800) 535-8446
www.trinitycarehospice.org
New Hope Teen Grief in Focus
P.O. Box 8057
Long Beach, CA 90808
(562) 429-0075
The Gathering Place
514 N. Prospect Ave., #115
Redondo Beach, CA 90277
www.griefcenter.info
Pathways
Lakewood & Long Beach, CA
(562) 531-3031
58
Educational and Support Materials
Approaching Grief
PDF Document
Published by Children’s Hospice International
http://www.chionline.org/publications/resources/approaching_
grief.pdf
Kids on the Block Pediatric Hospice Curriculum consists
of large handcrafted puppets, four scripts, props, follow-up
activities, and resources.
www.kotb.com/kob2.htg/hospice.htm
Living with Loss Magazine A support group in print offering articles, stories,
poems, and resources for the bereaved
http://www.bereavementmag.com
Grief Digest A quarterly magazine supporting grieving people and
caregivers
http://www.griefdigest.com
59
Chapter Eleven
Bibliography
60
BOOKS FOR CHILDREN
Sad Isn't Bad: A Good-Grief Guidebook for
Kids Dealing With Loss (Elf-Help Books for
Kids) by Michaelene Mundy http://www.amazon.com/Sad-Isnt-Bad-Good-Grief-
Guidebook/dp/0870293214/ref=cm_lmf_tit_5/104-3924757-
5215906
I Miss You: A First Look At Death
by Pat Thomas http://www.amazon.com/I-Miss-You-First-
Death/dp/0764117645/ref=pd_bxgy_b_text_b
Tear Soup by Pat Schweibert http://www.amazon.com/Tear-Soup-Pat-
Schweibert/dp/0961519762/ref=pd_sim_b_img_4
Help Me Say Goodbye: Activities for Helping
Kids Cope When a Special Person Dies by Janis Silverman http://www.amazon.com/Help-Me-Say-Goodbye-
Activities/dp/1577490851/ref=pd_sim_b_title_2
When Dinosaurs Die: A Guide to
Understanding Death (Dino Life Guides for Families) by Laurie Krasny Brown http://www.amazon.com/When-Dinosaurs-Die-Understanding-
Families/dp/0316119555/ref=pd_sim_b_img_5
61
BOOKS FOR SIBLINGS
Anna's Scrapbook: Journal of a Sister's
Love (Hardcover) by Susan Aitken http://www.amazon.com/Annas-Scrapbook-Journal-Sisters-
Love/dp/1561231347/ref=sr_1_1?ie=UTF8&s=books&qid=
1208111777&sr=1-1
All Shining in the Spring: The Story of a
Baby Who Died (Paperback) by Siobhan Parkinson http://www.amazon.com/All-Shining-Spring-Story-
Baby/dp/0862783879/ref=sr_1_1?ie=UTF8&s=books&qid=1
208111959&sr=1-1
Straight from the Siblings: Another Look
at the Rainbow (Paperback) by Gloria Murray http://www.amazon.com/Straight-Siblings-Another-Look-
Rainbow/dp/0890873410/ref=sr_1_1?ie=UTF8&s=books&
qid=1208112160&sr=1-1
Unspoken Grief: Coping With Childhood
Sibling Loss (Hardcover) by Helen Rosen http://www.amazon.com/exec/obidos/ASIN/0669110248/th
esiblingcon-20
62
BOOKS FOR TEENS
Teens, loss, and grief: The ultimate teen guide
(it happened to me)
By Edward Myers http://www.amazon.com/Teens-Loss-Grief-Ultimate-
Happened/dp/0810857588/ref=sr_1_6?ie=UTF8&s=books&qid=11
95198576&sr=1-6 &qid=1195198576&sr=1-2
When a Friend Dies
By Marilyn Gootman http://www.amazon.com/When-Friend-Dies-Grieving-
Healing/dp/1575421704/ref=sr_1_7?ie=UTF8&s=books&qid=1
195198576&sr=1-7
The Grieving Teen: A Guide for Teenagers
and Their Friends
By Helen Fitzgerald http://www.amazon.com/Grieving-Teen-Guide-Teenagers-
Friends/dp/0684868040/ref=sr_1_3?ie=UTF8&s=books&qid=11
95267901&sr=1-3&qid=1195198576&sr=1-7
When Will I Stop Hurting?
By Kelly Adams http://www.amazon.com/When-Will-Stop-Hurting-
Happened/dp/0810849216/ref=sr_1_9?ie=UTF8&s=books&qid=
1195267901&sr=1-9
You Can Get There From Here: Journaling
Through the Grief
By Leah Hawley http://www.amazon.com/You-Can-Get-There-
Here/dp/0976969602/ref=sr_1_15?ie=UTF8&s=books&qid=11952
68440&sr=1-15
63
BOOKS FOR CARE SUPPORT PROVIDER
Help My Kids Are Hurting: A Survival
Guide to Working With Kids in Pain
By Mary Penner http://www.amazon.com/Help-Kids-Are-Hurting-
Specialties/dp/0310267080
Teen Grief Relief: Parenting and
Understanding, Support and Guidance
By Dr. Heidi Horsley http://www.amazon.com/Teen-Grief-Relief-Heidi-
Horsley/dp/1568251106/ref=sr_1_2?ie=UTF8&s=books&qid=1195
198576&sr=1-2
Bereaved Children and Teens: A Support
Guide for Parents and Professionals by Earl A. Grollman http://www.amazon.com/Bereaved-Children-Teens-Support-
Professionals/dp/0807023078/ref=sr_1_1?ie=UTF8&s=books&
qid=1208113429&sr=1-1
Talking about Death: A Dialogue Between
Parent and Child (Paperback) by Earl A. Grollman http://www.amazon.com/Talking-about-Death-Dialogue-
Between/dp/0807023639/ref=pd_sim_b_title_1
For Those Who Live: Helping Children Cope
With the Death of a Brother or Sister
by Kathy Latour http://www.amazon.com/Those-Who-Live-Helping-
Children/dp/1561230286/ref=sr_1_1?ie=UTF8&s=books&qid=1
208114203&sr=1-1
64
References
http://www.childbirth.org/articles/whatis.html
http://www.childbirth.org/articles/stats.html
http://www.childrenshospitals.net/AM/Template.cfm?Section=Ho
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ay.cfm
http://www.compassionatefriends.org/
http://dying.about.com/od/glossary/g/endoflife_doula.htm
http://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross
Himelstein, B. P. (2006). Palliative Care for Infants, Children,
Adolescents, and Their Families [Electronic Version].
Journal of Palliative Medicine 9:1, 163-181Bryan, M.,
Cameron, J., & Allen, C., (1996). The Artist’s Way At
Work.
http://inside.nachri.org/AM/PrinterTemplate.cfm?Section=Homepa
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Ross, E.K. (1983). On Children and Death New York, NY:
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All images were obtained from www.google.com
