Transcript Dying to Communicate: Conversations with the Terminally Ill.

Life and Death do not wait for
perfect theories, definitive
studies, and validated
intervention procedures.
Life and Death
 Two of the attributes
that all humans share
are the experiences of
being born and the
fact that everyone
would eventually die.
Thanatologists: those who study the surroundings and
inner experiences of persons near death
Stages?
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Denial and isolation (No, not me!)
Anger, rage, envy, and resentment (Why me?)
Bargaining (If I am good, then can I live?);
Depression (What's the use?);
Acceptance.
 Most authorities believe that these stages do not occur in
any predictable order and may be intermingled with
feelings of hope, anguish, and terror.
Death and Culture
 Fear of Dying is innate
 Death is a socially constructed idea
 The fears and attitudes people have towards death and
dying are learned from educational and cultural
vehicles such as the languages, arts, and religion
 Every culture has its own coherent explanation of
death which is believed to be right by its members
Western vs Eastern Thought
 Cultures can be death-accepting, death-denying or
even death- defying. In the death-defying West, the
strategies for salvation have historically included
activism and denial.
 In the East, the strategies have often been more
contemplative and mystical.
No – Not Me!
 The United States, and probably most of the societies
in the West, is a death-denying/defying society where
even the idiom of expression is that of resistance.
 People vow not to go gently into the good night (Blake,
1988) or conjure images of fighting illness, or fighting
the enemy, death (Kalish & Reynolds, 1981).
Death Anxiety Across the Cultures
 Death anxiety is not prevalent to the same degree
across cultures.
 In a study of Hindus, Muslims, and Christians: found
that Hindus (who had the greatest belief in life after
death) also tested lowest in death anxiety, followed by
the Muslims, while the Christians showed the highest
death anxiety
Don’t Talk About It
 Although we are excited about
discussions concerning birth, people in
all cultures discuss death with extreme
reluctance. However, even though we
may use the same words to describe
death, the actual meaning and
conceptualization of death differs
widely across cultures.
Among Many Cultures
 Death signals an abrupt and permanent disengagement
 In some instances, people are prohibited from even
mentioning the names of the deceased in the fear that
doing so may actually endanger the lives of the living or
prevent the ghost from leaving this earth and attaining
peace.
What Scares You?
“Death doesn’t scare me. It’s
what comes before death that
terrifies me.”
Dying to Communicate
Interviews and Personal Narratives of over 1250
cognitive terminally ill hospice patients
 60% Female - 40% Male
 Ages 3 – 107
 80% Caucasian
 12% Hispanic
 6% African American
 2% Other
Dying to Communicate . . .
Concluded that…
Terminally ill people are
not allowed to talk about
their experience of dying
even though this research
shows they want and need
to talk about it.
Listen
The most basic of all human needs
is the need to understand and be
understood. The best way to
understand people is to listen to
them.
Ralph Nichols
3 year old Wisdom
“I’m not afraid. My bunny is
going with me.”
107 year old Wisdom
“I loved my children and
they’re all dead now. It’s not
right to outlive your children.
Never in my life did I expect
that. That was a shame.
I’m very old.”
The Death-Defying, Death-Denying Society . . .
A death-denying society is characterized by
an inability to discuss death and dying
openly. A death-denying society is one that
views death as a punitive consequence of poor
management of the physical self. A deathdenying society attempts to regulate death to
institutions, such as hospitals. A deathdenying society places little value in a dying
person.
Conclusions . .
Death accepting cultures of hospice
and palliative care provide an
environment in which the terminally ill
person can talk about his or her
experience of dying with people who
not only understand the many
dynamics of death and dying but
embrace people facing death.
Need for Death Mediators
A death mediator has to embrace death and dying
as a part of life and convey that acceptance in a
humane and compassionate way. A death mediator
is often found in an environment which values the
dying. Death mediators are most often found in
hospice and palliative care.
Society Does Not Want To Talk About
Death and Dying
“It sure is strange you wanting to
talk to me about dying. What type
of study is it? You going to be a
mortician? No, my mortician
didn’t even talk to me about dying,
you must be worse than that.”
Does Your Family Know . . . ???
“I think it’s great you’re
willing to come here and talk to
me about dying. Does your
family know you do this?”
Patients Want to be Told the Truth
“He couldn’t tell me I was dying,
either. What’s wrong with being
honest? When did it become a bad
thing to be honest? I wish he had just
told me we didn’t beat it. We tried, but
didn’t beat it. I would have understood
that, and I wouldn’t have blamed him
either.”
How Were You Told . . .?
“My doctor was so busy, he
couldn’t, didn’t tell me in
person. He called and left a
message on my answering
machine. ‘Your MRI shows
you have a brain tumor with
mets everywhere.’ I think you
need hospice now.”
Dying to Communicate
What the Dying Say about Life
“I think my life is ending too soon. I
think I still had more in me to go. I
wish I had done some things different,
but you can’t cry over spilled milk. You
look back and wish your eyesight was
dimmer. Memory is a rotten thing, you
know?”
Is It Always BAD News?
Finally, somebody knows what
is wrong with me. I thought I
was going crazy. I’m just dying,
that’s all, just dying…what a
relief.”
NO PAIN PLEASE . . .
“ Whatever happens, I don’t want to
die in pain. I mean, who does? I
don’t care what you guys need to
do, I don’t want to be in pain. Don’t
make me use a gun (laughs) . . .
.… I’m not talking on me, I
mean on you guys. If I have
real bad pain, I’ll just shoot
you.”
Tell Them For Me . . .
“I think it is going to be very soon and
I’m, I am going to be well again
somewhere else. Will you tell them
that for me afterwards. Tell them I was
happy to be leaving. Not leaving them,
but released. Tell them that okay, when
they are sad.”
When Do You Say Goodbye?
“How do you say goodbye? I was
never good at it and now, well, I’m
really having a hard time. How do
you know when to say goodbye for
the last time?”
Death & Dying Simulation
3 Things You Own (Things you would be sadden to lose,
include pets here)
3 Personal Attributes (What you like about yourself)
3 Activities You Enjoy (Sex is an activity)
3 People You Love (Children can be grouped into 1)
I’m Not Ready . . .
“It makes me a little crazy to think
about it, but that’s all I ever do. I
wonder, I keep wondering is this it? Is
this my last day on earth? I don’t want
to close my eyes. If I stay awake, I stay
alive. I wish I was ready. I wish I could
tell you that, but I’m not, I don’t want to
die.”
8 Months Later . . .
“I’m so tired. I think I’m ready now. I
don’t think too much about it anymore. I
wish it would just happen. Get it over with
and let’s move on. I’m ready now, tell
them all that okay? Tell them I was ready
finally. Tell them please.”
Are You Scared?
“Oh heavens no. It doesn’t scare me.
It’s rather fascinating if you ask me. I
just wish I had more time and energy to
explore it and find out where I was
going with all of it. I hope there is
awareness. . .
I don’t want to miss a thing.”
Final Wishes . . .
“I’ve made myself an urn. I’m painting
it bright red. That way nobody will
forget where I’m at. . . Somebody will
have to date it though. Can you do that
for me?”
Spell it Correctly . . .
“Don’t forget how to spell
my name. . .
Harry. H A R R Y!
You got it?”
They Never Forget
They may forget what you said –
but they will never forget how you made
them feel
Carl Buechner
Analogy of cultural diversity using weaving
as an example.
 Although weaving is a universal technique, the
patterns that result from this process are culturally
unique and identifiable.
 Thus, even when they use the same materials, patterns
used in Navajo, Chinese, Persian, Japanese and French
tapestries are recognizable not only in terms of colors,
but also of patterns and textures. This range of
diversity applies to issues about death and dying.
Attitudes and Beliefs
Among the cultural indicators to be considered are:
 nature of the beliefs toward the meaning of life, death and the
hereafter;
 funerary rituals and strategies for body disposal;
 the physical and symbolic boundaries between the worlds of the living
and the dead;
 the perceived role of the dead on the affairs of the living;
 the degree of social stigma attached to those dying, dead, or bereaved;
 orientations toward and rates of suicide, murder and abortion;
 death prevention and avoidance as a social goal;
 the death socialization of children (including death themes in
children's stories and games) and their involvement in funerary ritual;
 the taboo status of the topic of dying and death in everyday discourse;
 the language used regarding death.
Differences
 South Pacific cultures believe that life, as is generally
construed, departs the body of a person in different
situations, such as when one is ill or asleep. Thus
conceptualized, people can be said to "die" several
times before the final death.
Truskesian Culture
 The Truskese of Micronesia believe that life ends at 40
years of age, and when you reach 40, you are, in effect,
dead.
 Given the physically demanding activities engaged in by
people in this society, there seems to be a noticeable
decline in the ability of the Truskese to perform their
socially assigned roles at acceptable standards at this age.
 Sensing that the end must be coming, the individual begins
to prepare for death and is viewed as being dead even
before he or she transitions to that point as viewed from
the Western perspective.
Western – Christian Thought
 Death occurs only once.
 Christians do not believe that everything
ceases at death. The person sheds his or her
bodily form but continues on in spirit where
there are consequences.
 The faithful - believers who kept the faith are rewarded with eternal joy in heaven.
 Sinners proceed to hell.
Mother Teresa
 “Death is nothing else but going home to God, the
bond of love will be unbroken for all eternity.”
Native Americans
 Among some Native American tribes (and certain
segments of Buddhism), the dead and the living
coexist
 the dead can influence the well-being of the living. If
the dead (ancestral spirits) are properly reconciled,
the likely outcome is a benevolent spirit that protects
the interests of the living.
 If not accorded the appropriate treatment, the result is
an unhappy spirit that may ignore the well-being of
the living, leading to misery.
Navajo Legend
 One day, the Navajo people placed an animal hide in water.
If it did not sink, then no one would ever die. However, if
the hide sank into the water, then death would be part of
life. The Navajo did not watch the hide, but turned away
from it instead. While their backs were turned, a coyote
threw some rocks on top of the hide. Of course, this made
it sink down into the water. The coyote's reason was that if
no one ever died, there would come a point at which there
wouldn't be any more land on which the people would live.
This is the reason death comes for all of us eventually.
Circle of Life
 Die happily and look
forward to taking up a new
and better form. Like the
sun, only when you set in
the west can you rise in the
east.
Jelaluddin Rumi
Buddhist
 The universal law of karma ... is
that of action and reaction,
cause and effect, sowing and
reaping. In the course of natural
righteousness, man, by his
thoughts and actions, becomes
the arbiter of his destiny.
Paramahansa Yogananda
Attitudes and Beliefs
When you are born, you cry, and
the world rejoices. When you die,
you rejoice, and the world cries.
Tibetan Buddhist saying
Death in Hinduism
 Some cultures, such as the Hindu, envision a circular
pattern of life and death where a person is thought to
die and is reborn with a new identity. This exit and
reentry into life can occur multiple times.
 Death is not viewed as the end of all but only a step in
the existence of soul, a temporary cessation of physical
activity. Since Hindus believe in reincarnation and the
trans-migration of the soul, they approach the subject
of death without much fear.
Hindu Belief
 According to Hindu belief, it is necessary for the skull
to be broken by a blow with a cudgel at the cremation
ground, to free the soul from entrapment within the
skull.
Muslim
 A Muslim's body must be washed at least three times
after death with soap and water. Perfume may be used,
or camphor placed, in the orifices and armpits, while
prayers are said and passages read from the Qur'an.
Gyan Rajhans
Scientist and Hindu Spiritual Thinker
 “We brought nothing with us when we came, and
would take nothing with us when we leave this
world. In fact, we will leave a little extra behind if we
lead a life of goodness and philanthropy. If we
become soul-conscious, death will be an "ordered"
process, carried out in full consciousness and with
understanding of cyclic purpose. Once understood,
the fear of death ceases. It gives us a certain power to
control our passing over to the other side of the veil.
Let us approach death with as much normalcy as we
can manage.“
Russian
 In Russia, a copper coin was thrown in the grave to
help the dead person redeem a better place in the
other world.
 After the death of the farmer or his wife, a horse or a
cow died on the farm, it meant that the deceased took
his/her share with him/her to the other world (usually
an egg was put in the armpit of the body so that he/she
would symbolically have his/her share.
Ritual and Culture
 It is important to emphasize the situational aspects of
death rituals when interpreting these rituals cross
culturally and to take into account the cultural context
where the rituals that surround death take place
Culture & Rituals
 When examining death rituals cross-culturally it is
easy to attribute the same symbolic significance to
similar rituals. Nevertheless, after looking at the
rituals, used in the context of the culture they were
created in, the symbolic meaning can be quite
different.
 Crying, for instance, is common at funerals. In our
western countries it is a spontaneous expression of
feeling whereas in other cultures crying is mandatory
on certain occasions, including funerals, to symbolize
the attachment between persons .
Omens: Symbolic interpretation of
certain signs.
 The foreteller of death can be a bird or some other natural object.
 An instance of death in the neighborhood can be foretold by a raven's
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croaking, a bird flying on the window or into the house, a death tick
ticking on the wall, a dog's howling, the cackling of a hen.
The number of years one expected to live was counted by the cuckoo's
calls.
Other omens include noises in house at nights, itching of the nose,
stalks of straw crossed in a peculiar way during threshing the grain,. In
spring one could foretell poor crops and also death Even at childbirth
people tried to foretell by looking out, what kind of death the baby
would die.
Dreaming of a dead person, a priest, or a gift given by a dead person
predicted the dreamer's death. The symbolic language is the most
interesting feature in the interpretation of dreams.
Omens were also observed during funerals.
Tombstones & Graves
 Most modern cultures mark the location of the body
with a headstone. This serves two purposes.
 First, the grave will not accidentally be exhumed.
 Second, headstones often contain information or
tributes to deceased. This is a form of remembrance
for loved ones; it can also be viewed as a form of
immortality
Cremation
 Cremation is a more recent phenomena. It became
visible in the late 19th century and it was long seen to
be the preserve of the freethinker, the consciously
modern and even the weird.
 In the US, the growth of cremations has also been
associated with a social change – the breakdown of
family and community traditions and the decline in
mainstream religious affiliation
Preparation of the Corpse
 In Judeo/Christian countries like America and most of Europe,
the body is embalmed and often dressed in fancy clothes to be
buried. It has been suggested that this ritual is preformed
because the "sacred quality of man exists in the soul and spirit,
and that the body, as a temple or chamber for the spirit during
life, deserves decent and respectful treatment" (Haberstein,
1960).
 In some parts of Africa the corpse is bathed and dresses as well.
Some Africans believe that there is a long journey between this
world and the next and that death is a continuation of life and
not an ending. Thus, the body is bathed and dressed in a manner
to represent these beliefs of travel for a difficult journey.
Therefore, although the ritual of 'grooming' of the deceased for
burial may look similar for both Americans and Africans the
symbolic significance of the rituals are quite different.
The End
People living deeply
have no fear of death.
~Anais Nin