November 2000
Volume 64 |
Number 11
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| Death
Counseling Are We Prepared? |
Jessie A. Leak, M.D.
Committee on Communications
Because we die our death in this life,
because we are continually taking leave, continually disappointed,
ceaselessly piercing through realities into their nothingness,
continually narrowing the possibilities of free choice through
our actual decisions and actual life we die throughout life, and
what we call death is really the end of death, the death of death.
– Karl Rahner
As anesthesiologists, we are taught that
preservation of bodily functions is the most basic and fundamental
tenet of our specialty. Yet, as we subspecialize into areas of
pain management and into palliative care with a focus on the nurture
of the dying patient, this first law of the specialty fades.
We enter into an area with few rules: A
no man's land where specialists must learn to trust their own
intuition and above all respect the patient, the patient's family
and their cultural values. Yet, ironically, the practitioner must
actually train in a very orderly fashion to be natural, spontaneous
and empathetic in order to provide the most optimal dying experience
for each individual.
The Scenario
Body lying flat on a last bed,
Voices whispering a few last words,
Mind watching a final memory glide past:
When will that drama come for you?
– Jose Antonio Lutzenberger
Many practitioners have had the experience
of walking into a patient's room and knowing intuitively that
the person on the "flat last bed" is dying. In this
situation, how do you approach the patient and the family, interact
with the patient's primary physician and yet honor that person's
wishes, cultural values and the inevitable denial inherent in
every dying person's experience?
Mrs. B., a 44-year-old African-American
female with a diagnosis of liver cancer laid peacefully in what
I judged to be a dying condition in our outpatient palliative
care unit. Her 21-year-old son, his wife and child, and her 9-year-old
son, all of whom were clearly in denial about her situation, surrounded
the bed. As the nurse came to give me her assessment, she said,
"Mrs. B. doesn't look like she is going to make it, does
she?" I quickly called her primary care oncologist who stated
that although he had not seen her in a month, he was planning
further palliative chemotherapy. As I explained the dire nature
of her condition, it became clear that he was not willing to stop
treatment because he was uncomfortable telling her that she was
terminal. He asked me if I would mind telling her!
A Common Experience
In many instances, the patient and the
family have not been fully apprised of the terminal nature of
the illness. Physicians are generally reluctant to tell a patient
that all possibilities have been exhausted. This seems to signify
to some practitioners that they have failed to provide a safe
haven to patients who have entrusted their lives to them. The
physician must in that instant, either consciously or subconsciously,
face his or her own aversions to death and their patients' personal
fears of the unknown.
What Should You Do?
Communication is the cornerstone of palliative
care medicine. It is important to contact the patient's primary
physician to determine the extent to which the practitioner has
acknowledged and communicated to the patient that he or she is
terminally ill. Further, it is important to understand as many
of the sometimes conflicting recommendations that the family has
received. It is not unusual to have the primary care physician
ask the palliative care provider to actually discuss the terminal
nature of the illness with the patient and the family and to problem-solve
care options.
The logistics of doing such discussions
are very individualized. One must take into account the role of
the patient's family and cultural values, the issues of denial,
any contribution that suffering may be playing in the dying process,
and how or if the patient and family have embraced the grieving
process. Encourage the family to tie up any loose ends such as
guardianship or financial issues, including completing a will
and planning goodbyes. Many patients may express fears of dying
in pain or suffocating and/or a fear of dying alone. Most importantly,
the practitioner must try to reassure the patient and the family
that they will not be abandoned.
Cultural Considerations
When considering different ethnicities,
one must be aware of the overlapping influences that family, religion,
culture and tradition play in the acceptance of death. Americans
as a whole tend to function as a "death-defying" culture
in a most profound way by embracing the philosophy that not only
is death unnatural, but that avoidance of the subject may actually
forestall or negate the inevitable. However, among the broad representation
of cultural groups in the United States, there can be tremendous
variation.
The Jewish culture calls for an orderly
progression of death rituals starting with the symbolic ripping
of a garment followed by a seven-day shivah (a period of mourning)
after which mourners return to their day-to-day responsibilities.
The diversity of attitudes expressed in
the African-American culture is perhaps best expressed by J.L.
White in The Psychology of Blacks: An Afro-American Perspective:
"Death in the black community is perceived as a celebration
of life, a testament to the fact that a life has been lived, that
the earthly journey is completed.The deceased has fought the battle,
borne the burden and finished the course."
The Native American cultures vary in their
beliefs concerning the existence of an afterlife. The Dakota (Sioux)
tribe, the second largest in the United States, believes that
life and death represent a cyclic quality, and as such, both are
regarded as sacred.
The Mexican-American culture values both
their religious experience and family cohesiveness as important
components in the grief process. Grief may be experienced as both
an emotional as well as a physical process.
What Is a Reasonable Approach to the
Death Dialogue With a Patient?
In the case of Mrs. B., her family was
not at all accepting that death was imminent. Their fervent belief
was that "God was going to heal her." No guardianship
or financial provisions had been made for the care of her nine-year-old
son, and her elder son was working two jobs to support his new
family. Logistically, the patient was alone much of the day, but
there was an extended church network available. The patient's
cognitive function was poor as she wavered in and out of full
consciousness, a typical terminal symptom. My role was to introduce
options to the patient and family that would enable her to "officially"
end cancer treatment and thus to access hospice or other end-of-life
care and to ensure that the appropriate social arrangements were
made for her and her family. She had not been afforded this opportunity
as long as active treatment for her cancer continued.
The most effective manner to deal with
such a scenario is to involve a team of trained individuals to
sit with the family through this dialogue. This could include
the physician, a social worker, chaplain, nurse or other individuals
as indicated. The discussion should be in a quiet room with a
minimum of bright overhead lights and with everyone seated. It
may be helpful in some situations to record your discussion on
a cassette tape for the family, as they frequently will not remember
much of the discussion if there is a high degree of denial present.
A frank discussion of the patient's condition
is helpful, drawing the family's attention to the obvious signs
of dying, such as a “death rattle, increasingly impaired cognition,
increased sleeping or little unforced oral intake. In some instances,
the patient and/or the family is consciously suffering because
he or she has not been afforded reasonable options earlier either
to cease active treatment and/or to obtain adequate pain management.
Once the patient and family seem to at
least recognize that the patient is either physically, psychologically
or mentally doing very poorly, they may be willing to discuss
options such as outpatient hospice, home nursing care, hospitalization
if indicated or an inpatient palliative care unit if one is available.
The issues of advance directives should
be thoroughly covered so that the family can decide together what
they wish to do in the coming days and weeks. Whether or not the
patient is to be admitted to an inpatient unit, the issues of
hydration/feeding, types of resuscitation, the use of palliative
blood transfusions, antibiotics, I.V.s or laboratory work and
the use of pain/anxiolytic medications should be clarified in
terms of the level of care that the patient and the family wish
to receive.
At the end of this discussion, it is absolutely
critical to expeditiously document all elements of the discussion
clearly and to both personally call and to forward in writing
this information to the primary care physician.
Is There a Handbook for This Stuff?
Unfortunately, there is no "cookbook"
on how to approach the subject of death and dying with a patient
and his or her family. The privilege of dealing with the dying
patient is one that is learned with practice and through an exploration
of one's own feelings, beliefs and personal experiences with death.
Probably the most important lesson to remember is that listening
unencumbered by one's own belief system is the greatest gift
that anyone can give to a dying patient.
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Jessie
A. Leak, M.D., is Associate Professor, Department of Anesthesiology
and Department of Symptom Control and Palliative Care, M.D.
Anderson Cancer Center, Houston, Texas. |
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