Transcript Cultural Traditions in End of Life Care

Christine M. Estrada, DO, MPH
Hospice & Palliative Medicine
Medical Director, Hospice INSPIRIS
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To understand how culture affects medical care
To recognize family-centered decision making
and surrogate decision making in the cultural
context
To learn about end-of-life traditions in African
Americans, Asian and Pacific Islanders,
Latinos/Latinas, and Native Americans,
including:
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Beliefs on death and dying
End-of-life care
Burial rituals
The Afterlife
To understand how we can bridge the gap in
cultural competency and end-of-life care
Patient Ethnicity
2008
2007
Hispanic or Latino(a)
5.6%
5.1%
White Caucasian
81.9%
81.3%
Black/African American
7.2%
9.0%
Asian & Pacific Islander
1.1%
1.6%
American Indian
0.3%
0.3%
Multiracial or Other Race
9.5%
7.8%
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With increasing diversity in the United States,
there is the increased risk for cross-cultural
misunderstandings surrounding end-of-life care.
Encounters between physicians and patients of
dissimilar ethnicities are becoming more common.
Culture fundamentally influences how individuals
make meaning out of illness, suffering, and dying,
and therefore influences how they make use of
medical services at the end of life.
Kagawa-Singer & Blackhall, 2001
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With regard to end-of-life care, studies have
shown cultural differences in:
Truth telling
 Life-prolonging technology
 Decision-making styles
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End-of-life experiences, beliefs, and
expectations are linked to cultural values
Tellez-Giron, 2007
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Misperceptions caused by lack of cultural
sensitivity and skills can lead to unwanted or
inappropriate clinical outcomes and poor
interaction with patients and their families at the
life end journey.
If a family believes that knowing the truth is
harmful to the patient, a physician who persists in
telling them the “direct” truth may be perceived as
cruel, uncaring, and ignorant. The result is
mistrust and anger, and may even precipitate the
removal of the patient from medical care
altogether.
Tellez-Giron, 2007
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The multicultural medical encounter will have
different languages, religious beliefs, and ways of
understanding the treatment of illness and the
experience of suffering and dying.
Styles of communication and beliefs about the role of
physician, patient, and family can also vary, and
usually against the backdrop of health care inequities.
The clinical encounter often requires a negotiation
between the cultures of the clinician and the
patient/family unit to reach mutually acceptable goals.
In the end, addressing and respecting cultural
differences will likely increase trust, leading to better
clinical outcomes and more satisfactory care.
Kagawa-Singer & Blackhall, 2001
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Blackhall et al (1995) concluded with their survey
study that Korean-Americans and MexicanAmerican subjects were more likely to hold a
family-centered model of medical decision making
rather than the patient autonomy model favored
by most of the African-American and EuropeanAmerican subjects.
This finding suggests that physicians should ask
their patients if they wish to receive information
and make decisions or if they prefer that their
families handle such matters.
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Kwak & Haley (2005) found that non-white
racial or ethnic groups generally lacked
knowledge of advanced directives and were
less likely than Whites to support advanced
directives.
African American were consistently found to
prefer the use of life support, while Asians and
Hispanics were more likely to prefer familycentered decision making than other racial or
ethnic groups.
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One qualitative study showed that the
experience of burden of end-of-life decision
making was similar in African American,
Caucasian, and Hispanic surrogates (Braun et
al, 2007).
They concluded that, regardless of race or
ethnicity, surrogates for serious ill patients
appeared to experience increased significant,
multidimensional burdens of decision making
under conditions of uncertainty about a
patient’s preferences.
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West & Levi (2004) found that African Americans’
historical distrust of the healthcare system and lack of
accessibility reflect perceptions of end-of-life care.
The withholding of life-prolonging treatment, the
removal of nutritional support, and the possibility of
limited or no resuscitative efforts are seen as another
attempt to limit access to healthcare.
Advance care planning is also regarded with distrust
and suspicion that care will be diminished in some
way.
African Americans prefer the use of life-sustaining
treatments at the end of life (Mitchell & Mitchell, 2009).
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Providers should communicate with the eldest
family member.
Public displays of emotion should be expected.
Families frequently care for dying elders at
home.
Lipson J et al, 1996
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Some believe that a death in the home brings the
family bad luck.
Families often want the health care team to clean
and prepare a loved one’s body.
Some may consider organ donation taboo but may
agree to an autopsy.
Cremations are often seen as taboo because of the
sanctity of the body and spirit.
Funeral services are sometimes called “homegoings” to show that the deceased is going to a
better place.
Lipson J, 1996
“Precious Lord, take my hand, lead me on, let me
stand, I am tired, I am weak, I am worn. Through the
storms, through the night, lead me on to the light,
take my hand precious Lord, and lead me on”
(Unichappell Music, 1938).
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Kalish & Reynolds (1981) found that members
of the Japanese community in LA insisted on
maintaining control over communication.
However, even when a loved one was dying
and in distress, there was great restraint in
communicating the situation to health care
providers.
This resistance is influenced by another
attitude found amongst many Asian cultures:
the belief that talking about bad things usually
created them.
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It also shows what several studies
demonstrated among Japanese Americans,
Cambodian Americans, and Chinese
Canadians that family members may prefer
that dying persons not be told that they are
dying (Thomas, 2001).
Many Asian cultures are patriarchal and
hierarchal; there is usually one specific person,
usually the eldest male or at least an older male
in the family who is expected to make health
care decisions on behalf of family members
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Older Korean adults and caregivers both expressed
a lack of knowledge about advanced care planning
and hospice and agreed that the family would
make the final decision about end-of-life care
(Kwak & Salmon, 2007).
Thai caregivers in the United States describe care
giving as a willing burden and an unavoidable
duty, attitudes which are clearly influenced by
Buddhist beliefs (Limpanichkul Y & Magilvy K,
2004).
A family may prefer that the patient not be told of
terminal illness or imminent death, or may prefer
to tell the patient themselves (Lipson, 1996).
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Some believe that a death in the home brings the
family bad luck.
Others believe that the patient’s spirit will get lost
if death occurs in the hospital.
Family members make use of special amulets or
cloths.
Some families prefer to bathe the patient
themselves.
They may believe that the body should be kept
intact; organ donation and autopsy are
uncommon .
Lipson et al, 1996
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Providers should communicate with the head of
the family, out of the patient’s presence.
Public displays of emotion may be expected.
Terminally ill patients may prefer to die at home.
If the family is Catholic, they may ask that a priest
perform the “sacrament of the sick” and may use
religious objects (such as rosary beads) and prayer.
Family members may want to wash the body and
are likely to want time for all family members to
say goodbye.
The family may not permit donation or autopsy.
Lipson J, 1996
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Most important decisions are made by
consensus rather than individually.
Extended families care for loved ones who are
ill, sharing information and decision making.
In some cases, patients prefer to be given bad
news in the presence of their family; in other
cases, families prefer that health professionals
not inform the patient about the diagnosis and
prognosis of terminal illness.
Tellez-Giron, 2007; Lipson J, 1996
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Reluctance to have personal care given by
anyone other than an assigned family member.
Life-sustaining measures are less acceptable.
In the majority of the cases, the head of the
household, usually a man, will make the
decisions.
With older adults, the eldest child is usually
appointed to assist with decision-making, or
family consensus in a case of an undefined
hierarchy.
Tellez-Giron, 2007
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Most Latinos wish to die at home in the company of all
their family.
Death is not an end but a continuum of life.
The concept of time is a very personal one, “I will
decide when I die”.
The majority expects it to happen at an advanced age,
and therefore, planning for death may not be started
until the very late stages of illness, if at all.
Beliefs around planning, “If you planned it then it
would happen”.
Therefore, Latinos are less likely to have advanced
directives than other racial groups.
Tellez-Giron, 2007
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Dying in a hospital may not be desirable, some
believe that the patient’s spirit will get lost
there
Special amulets, religious objects, such as
rosary beads, and prayer are used
Lipson J, 1996
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Latinos have a strong belief in God.
Religious faith (most are Catholic) plays an
important role in understanding health and
disease, and it is a key source for the acceptance of
dying and the grieving process.
In many cases, religious faith may become stronger
when a family member faces a terminal illness.
Patients and families turn to God for hope and
comfort believing whatever happens will be
meaningful.
Tellez-Giron, 2007
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Group prayer
Religious mass offerings: masses are dedicated to God
or a specific Saint to ask for health and well being
Cleansings: traditional practices conducted by
“curanderos”, or traditional healers, to “clean” the
body and the spirit from disease and/or bad spirits or
spells using praying, various plants, animals, and eggs
“Mandas”: saint’s offerings (people offer material
things, praying, actions requiring a sacrifice, to a
specific saint in exchange for health, favors, and/or
miracles
Tellez-Giron, 2007
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Relatives may help with care of the body, and are
likely to want time to say goodbye.
Organ donation and autopsy are uncommon.
Family would like the body to be returned
“home”.
Because of religious and cultural beliefs, the
majority elect burial versus cremation.
There are legal and economic aspects of dying
since transporting the body back to the country of
origin can be quite costly and complicated.
Lipson J, 1996; Tellez-Giron, 2007
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Belief in a Supreme Creator
The “earthly plain” is a world of learning
experiences or a journey.
Some tribes believe in two souls: one that dies
when the body dies and one that may wander
on when the spirit dies.
Various death customs and beliefs gave them
the means to cope with the dying experience.
Encyclopedia of Death & Dying
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The Spirit World is a place where one is met by
ancestors who have passed before.
This world is one of love and beauty and not to
be feared.
Those who have a near-death experience state
it was a difficult choice to make, whether to
remain in the spirit world or to journey back to
the earthly plain.
Some have chosen to return to their human
forms; others wish to remain in the spiritual
sense of being.
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The spirit chooses the outer covering or vessel
while on the earthly journey.
When dying, the “outer shell” deteriorates but the
spirit lives on.
Patricia Turner-Weeden described the life end
transition to be a time of peace and understanding
-- a time to communicate, if at all possible; to settle
differences, to make peace with ourselves and
others.
The next step would be through the "Big Open
Door" into the spirit world, to greet the Creator
and all ancestors.
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Rites among Native Americans focused on
aiding the deceased in their afterlife.
Some tribes left food and possessions of
the dead person in or near the gravesite.
Among many tribes, mourners, especially
widows, cut their hair.
Some Native Americans discarded
personal ornaments or blacked their faces
to honor the dead; others gashed their
arms and legs to express their grief.
O Father
Whose voice I hear in the winds and
Whose breath gives life to the world,
Hear me.
I am a man before you, one of your many children.
I am small and weak.
I need your strength and wisdom.
Let me walk in beauty and
Make my eyes ever behold the red and purple
sunsets.
Make my hands respect the things you have made,
My ears sharp to hear your voice.
Make me wise so that I may know the things
You have taught my people—
The lessons you have hidden in every leaf and rock.
I seek strength, Father,
Not to be superior to my brothers,
But to be able to fight my worst enemy, Myself.
Make me ever ready to come to you
with clean hands and a straight eye, so that
When life fades as the fading sunset,
My spirit may come to you without shame.
Bridging the Gap
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The differences in end-of-life decision making
preference and practice suggest that clinical care
and policy should recognize the variety of values
and preferences found among diverse racial or
ethnic groups.
We must learn the basic concepts of the various
cultures and keep an open communication
channel.
We should explore our patients’ beliefs and
values, reflect our own beliefs and values, and if
possible, compromise to try to reach and best
serve all cultures in the end of life.
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We must get to know the individual as well as the
unique cultural influences, which will help us
overcome barriers that impact end-of-life care.
We should ask the patients if they wish to receive
information and make decisions or if they prefer
that their families handle such matters on their
behalf.
We should identify and be especially attentive to
strategies used by surrogates, which may vary by
race/ethnicity, to reduce the uncertainty about a
patient’s preferences and thus the burden of
surrogate decision making to assist them in this
difficult process.
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Do not make assumptions
Be sensitive and respectful
Provide a “safe” environment
Create care plans that include culturally
appropriate approaches and personal care
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