A Special Report:
Spiritual Care At
the End of Life
| by EDWIN R. DUBOSE |
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Challenges for Hospital, Hospice, and Congregational
Clergy
Collaborating with hospitals, hospices,
and congregations in the
Chicago area, the Park Ridge Center for
the Study of Health, Faith, and Ethics
conducted a two-year qualitative research
study to better understand spiritual care
at the end of life and the clergy's role in
meeting the spiritual needs of the dying.
Based on the study, this article
reflects on the meaning of spiritual care
at the end of life from the perspectives of
religious leaders and the people whom
they serve. It explores how members of
the clergy can work with each other and
others to improve end-of-life care by
defining spirituality, religion, and spiritual
care in the context of end-of-life
care. The article also helps caregivers
identify and respond to the spiritual concerns
of a person facing the end of life. It
explores ways to create an environment
where the dying patient's spiritual orientation
can flourish. Finally, the article
helps clergy and other caregivers reflect
on their sense of spirituality, especially as
it relates to end-of-life care.
To give voice to the people involved
in the study, in this article we include the
words of hospital and hospice patients as
well as congregational members facing
life-threatening illness. Clergy voices are
captured, too, as are scenarios from the
observational notes. As records of the
thoughts, feelings, and experiences of
patients wrestling with life-threatening
illness and of their clergy caregivers, our
hope is that these words will illustrate the
challenges and possibilities involved in
spiritual care at the end of life.
METHODOLOGY
To better understand spiritual care at
the end of life and the clergy's role in
providing it, the Park Ridge Center's
qualitative research project incorporated
participant observation and semistructured
interviews. The Center placed
observers in three settings—a hospital, a
hospice, and three congregations—to
better understand the formal and informal
interactions involved in identifying
a desire for, and providing, end-of-life
spiritual care. Field researchers examined
clergy's understanding of spiritual
care and how they cared for people facing
life-threatening illness. Researchers
also observed operational elements of
these three types of organizations—their
administrative rules, the informal practices
associated with organizational culture,
and ways staff interacted with clergy
around end-of-life care.
Researchers conducted semi-structured
interviews with eighteen
people facing life-threatening illness,
exploring their understanding of spirituality
and their spiritual needs as they
faced their illness. In addition, researchers
interviewed in depth fourteen hospital,
hospice, and congregational clergy to
learn their views on spiritual care at the
end of life.
Results of the observations and
interviews—including strategies formulated
to help meet the spiritual needs of
the dying—were presented for discussion
to more than 200 clergy at workshops
and focus groups. Their feedback validated
the categories, interpretations,
and conclusions.
SELECTION CRITERIA
During the field observations at
each site, researchers identified potential
patient and clergy interviewees.
Additionally, in the congregations, clergy
announced the project and requested
volunteers for interviews. The
sampling goal for the project was to
interview nine clergy from the various
care settings: six hospital and hospice
chaplains and three congregational clergy.
The researchers hoped for nine
patient interviews from each of the care
settings, for a total of twenty-seven. The
study did not involve random sampling,
but there was no effort to fill particular
categories, such as age, race, gender,
religious or non-religious affiliation.
END OF LIFE DEFINITION
The most difficult and poorly handled
issue in end-of-life research is the
inconsistency and confusion about conceptual
and operational definitions of
"end of life," "dying," and "terminal illness."
Reviewing more than 400 research
articles on end-of-life care, Linda George
found a wide variety of operational definitions.
1 Some investigators categorized
individuals as dying, facing the end of life,
or terminally ill based on diagnosis alone.
Other investigators used varying combinations
of diagnosis, symptom expres-sion,
and functional capacity. Most
frequently, investigators relied on physicians'
prognoses about life expectancy;
this is especially true in randomized controlled
trials, despite empirical evidence
that physician prognosis is highly inaccurate.
2 Some studies relied on the prognostic
assessments of the patients or their
family members to define whether the
patient was dying. In other studies, the
healthcare setting defined who is dying—
a significant number of studies used
receipt of hospice care, palliative care, or
even being in the intensive care unit as a
definition of dying. Finally, in a large proportion
of studies, no definition of dying
or terminal illness was offered or could be
discerned implicitly.
George also found a variety of conceptual
models of the dying process to
match these operational definitions.
Among these theoretical frameworks are
stage theories of dying,3 dying trajectory
theories,4 task-based theories of dying,5
and Copp's readiness to die theory.6
The failure to develop congruent
conceptual and operational definitions—
or sets of definitions—of dying, end of life,
or terminal illness has important methodological
implications for empirical
research on the end of life. It is difficult,
for example, to compare findings across
studies with accuracy or confidence, and
to apply research to practice or policy.
In the Park Ridge Center study,
investigators defined approaching end of
life as having eighteen months or less to
live. This determination was based on:
diagnosis of a life-threatening illness, for
example, stage four cancers or congestive
heart failure; physician prognosis; healthcare
setting, for example, intensive care
unit, cancer unit, or hospice; and patients'
own prognostic assessments. The patients
interviewed were on a trajectory of eighteen
months from diagnosis and treatment
for a life-threatening illness to a
prognosis of six months or less to live.
End-of-life care was held to be the physical,
social, emotional, or spiritual care
that these patients received along this
trajectory. The study focused on spiritual
care. The researchers hypothesized that
patients' spiritual concerns and the nature
of spiritual care might vary across this
end-of-life trajectory.
Unlike quantitative research, qualitative
research like ours is not subject to
George's concerns. We do not generalize
the findings, interpretations, and recommendations
to all hospital, hospice, and
congregational clergy, or to all patients
facing the end of life. We do not claim
that our results are quantifiable; we
would not compare our findings with
other studies or offer them as empirical
evidence for policy or practice changes.
We believe, however, that these perceptions,
stories, and words will resonate
and be helpful as the reader reflects on
the nature of spiritual care and support
for people facing life-threatening illness.
INTRODUCTION
Throughout the history of religion, the
clergy have found their vocation in
sustaining vital power among people
bombarded by morbid and mortal forces.
Most religions share a belief that life and
breath are a divine gift. To be truly alive,
the spirit must be animated. As representatives
of faith communities, the cler-gy
seek to imbue existence with a sense of
verve by instilling meaning and value to
experience across the life cycle. Yet, like
medicine, religion is a field surrounded by
death. Eventually everyone slides into
death, the end of the human organism.
Death, too, through its finality, threatens
the end of human personality and forces
us to grapple with the dread limits of our
mortality.7 Religiously or spiritually
charged figures have always played a key
role as caregivers at the limits of life, supporting
individuals' search for spiritual
wholeness and meaning in the face of
death.
Although clergy are associated with
the care of people facing the end of life,
whether in healthcare or congregational
settings, studies in recent years show that
many people in the United States are
reluctant to turn to clergy for support
during their dying. Explanations for this
reluctance include social dislocation, the
secularization of society, an ethos of individualism,
and changing patterns of religious
and spiritual expression. For many
others, however, clergy remain culturally
powerful figures in the transition from life
to death. Given the current cultural conversation
about end-of-life care in America—
with spiritual caregiving as a
component—it is timely to review the role
of the clergy in supporting dying people.
For hospital, hospice, and congregational
clergy to be more responsive to
dying people's spiritual needs, clearer
understanding in three broad areas must
be gained.
First, what constitutes spiritual support
at the end of life? Second, what are
dying people's spiritual needs? What do
dying patients want from spiritual caregivers?
What spiritual needs remain
unmet by clergy and faith communities?
Third, what challenges, barriers, or obstacles
do the clergy face in meeting these
spiritual needs?
BACKGROUND
When I entered the hospice program,
a chaplain was offered to me. At first, I
said, "No." I decided later to ask for a
Many people are reluctant
to turn to clergy
for support during
their dying.
chaplain, in order to have someone to
say prayers by my graveside after I die.
—a patient
People with life-threatening or terminal
illness face a world turned upside down.
If hospitalized, they suffer from anxiety,
dislocation from familiar routines, and
separation from family and friends. If
able to live at home, they must deal with
their physical condition and the social
and emotional consequences of a deteriorating
existence. Even with the optimal
six months of hospice enrollment and all
the support that hospice offers, people
must still struggle with the pain and suffering
that accompanies their dying.
Those who face death reach for
medical and spiritual resources, among
others, to make sense of what is happening
to them. Healthcare organiza-tions
and providers, therefore, attend to
both medical and spiritual needs. Spiritual
and physical health have always
been closely connected. In the past,
responsibility for both spiritual and physical
health rested in the same individual;
clergy were often doctors, for example.
Faith communities founded and spon-sored
medical endeavors, and nursing
was perceived as a religious calling.
As health care developed, however,
labor sharply divided, and by the beginning of the last century, medicine and
religion had clear boundaries and dif-fering
professional approaches. Physicians
and nurses diagnosed and treated
physical and mental disease. Clergy and
pastoral caregivers attended to the soul.
Despite the contemporary chaplain's
important role in caring for
patients' spiritual needs, we cannot simply
hand off spiritual issues at the end of
life to chaplaincy services. Many people
facing end-of-life issues, for example,
are not hospitalized when their spiritual
needs can best be met. Congregational
clergy may be in a better position to
support such individuals. Yet, as the
result of specialization within clergy
ranks, the rise of professional healthcare
chaplains has modified traditional clergy
involvement with the dying. Congregational
clergy now concentrate on
nurturing the religious and spiritual lives
of their communities. As a result, these
clergy are ill prepared to support the
terminally ill through dying and death,
according to a recent assessment by the
American Medical Association.8
The gradual separation of medicine
and religion reflects a shift in the way
death is approached in our culture. Religious
resources, through pastoral care
services, are available to those dying
patients and their families who request
them. However, the ability of modern
medicine to stave off death through
aggressive medical intervention is truly
impressive. In his book, The Hour of Our
Death, Philippe Ariès proposed that the
modern effort to bring "wild" death into
the controlled environment of the hospital
represents the effort to domesticate
it.9 Medicine has succeeded at least in
confining death to particular institutions:
about 80 percent of Americans die in a
hospital or long-term care facility. Ariès
argued, however, that our fears and anxieties
about death and dying seep
through any levees we build to contain
them. For example, while many people
facing life-threatening illness seek aggressive
medical care, they still fear losing
control of their lives—and their deaths—
to the medical machine.
THE MODERN AMERICAN
ORGANIZATION OF DEATH
Health care in the United States is
based on the myth that everyone will
have a long and healthy life, and then die
suddenly. Today, however, most deaths—
typically from cancer, congestive heart
failure, or chronic obstructive lung disease—
are long and slow, a process that the
average person finds frightening. At the
turn of the century, most Americans died
at home, surrounded by their family and
friends. There were rituals, traditions,
and communities to support the dying
person and family. By the 1950s,
although more and more people were
going to hospitals to try to get well, or to
spend their final days, more than 50 percent
of deaths still occurred at home. By
the 1970s, however, a hospital room was
where nearly all Americans died—one's
last glance took in ventilating machines,
the ICU, or a dangling IV bag.
There is growing awareness that the
prevailing model of death is one of medical
and therapeutic management. Such
aggressive care can raise healthcare costs
and prolong human suffering. We pour as
much as 80 percent of medical dollars
into the last two years of life, and we all
know stories of people who endured a
mechanically supported, painful, and prolonged
process of dying. Many people
feel that something is not right with this
model of dying in America.
For the past twenty-five years, those
striving to reform the way medicine cares
for the dying have stressed legal and ethical
issues, including questions of terminating
treatment, euthanasia, and assisted
suicide. Patient autonomy is the overriding
concern as we try to manage death
medically. Every state has now enacted
legislation on advance directives, and a
growing body of judicial opinion focuses
on associated issues. Reformers have
also focused on improving communication
between patient and physician to
combat seeming professional bias and
insensitivity, promoting advance care
planning, and defending the patient's
right to refuse treatment. Unfortunately,
there is little evidence that these efforts
have succeeded.
In 1995 the Study to Understand
Prognoses and Preferences for Outcomes
and Risks of Treatment (SUPPORT) was
published. This four-year study collected
data on thousands of very ill hospital
patients and identified problems with the
care they received in terms of pain management,
use of advance directives, and
do-not-resuscitate (DNR) orders. Investigators
tried to rectify those problems
by giving patients and families a bigger say
in their care. To the disappointment of the
investigators, none of the interventions
seemed to make a difference.
More than 50 percent of the study's
patients were reported to be in substantial pain during their last days. Most of
the patients who died spent their last
days in the ICU on a ventilator, unable to
communicate with family or friends.
Clinicians paid little attention to advance
directives; a DNR order typically was
written only a few days before a patient's
death. Patients and families often seemed
adrift and confused about the illness and
care appropriate for it.10
Patients, families, and physicians
still seem terribly reluctant to raise the
subject of death. Many patients never
give up hope of recovery until the very
end, if at all. We have focused too much
on patient-caregiver relationships and
legislative reform to ensure patient
autonomy in decision making. Death is
just too overwhelming for any boundaries
or controls that we try to place over it.
Perhaps we need to take a new look at
the spiritual resources the dying draw
upon when facing the physical, emotional,
and social pain and suffering that
accompanies a life-threatening illness.
A WAKEUP CALL TO THE CLERGY
The 1997 Gallup survey Spiritual
Beliefs and the Dying Process reinforced
claims that American medicine often fails
to provide what dying patients seem to
want most, including death at home
among close family and friends, recognition
of and support for the deeper spiritual
and meaning dimensions of dying
and death, and assurance that their families
will not be overburdened with their
care or neglected in their loss. Not many
respondents—only 36 percent—believe
that the clergy would be "especially helpful"
at the time of death, compared with
81 percent who cited family and 61 per-cent
who cited friends.11 Gallup described
the findings as "a wakeup call to the clergy,"
suggesting that the clergy must reconsider
ways to meet people's spiritual needs
at the end of life.
Ironically, these findings come
during a boom time for research on the
potential effects of religion and spirituality
in treatment interventions and outcomes,
including the effects of
spirituality on end-of-life care. Fueling
interest in spiritual care at the end of life
have been the palliative care movement—
with its stress on physical, emo-tional,
social, and spiritual support
during dying—and the Joint Commission
on Accreditation of Healthcare Organizations' standards on a patient's right to
spiritual care.
But if spirituality is understood in
this way, as a health benefit, there is the
danger that spirituality will become one
more instrumentality applied in an
attempt to cure what ails the patient.
Recent attention to spiritual care for
dying patients in acute-care and hospice
settings reveals a particular concept of
secularized spirituality.12 The effort in
health care to disassociate the spiritual
dimension from religion produces a lowest
common denominator, replacing the
traditional notion of spirituality—the
human being in relation to the transcendent—
with a personal and psychological
search for meaning. In this way,
the recent interest in spiritual care at
the end of life may in fact represent the
effort to domesticate spirit. Does not the
spiritual life need to be pursued in terms
of its own goals—a deeper relationship
with the transcendent—and not as a tech-nique
to produce beneficial effects?
If attention to spiritual care reflects
an effort to manage the spiritual and
emotional needs of the terminally ill, it
is misplaced. Gabriel Marcel pointed
out thirty-odd years ago that there is a
distinction between problem and mystery.
13 Problems are solved by use of
techniques; mysteries admit no solution.
Problems require a distance between
the subject, the one with the technique,
and the object, the puzzle to be solved.
Healthcare practitioners see a person's
illness as a series of problems to be overcome;
they are masters of technique, so
much so that the mystery of life is often
unappreciated. Attention to the spiritual
aspect of our nature puts us in touch
with the mystery of which Marcel writes,
and may better prepare us for death.
The Gallup poll did not probe
deeply into the issues of spirituality and
spiritual care at the end of life. Unanswered
are such questions as: What do
people mean by spirituality or by spiritual
care? What spiritual needs do people
have as they approach the end of life? Do
these needs vary as people move from
participation in a faith community to
being cared for in or by a healthcare
institution such as a hospital or hospice?
What do dying people perceive as personal, cultural, and institutional barriers
to recognition of and support for the
deeper spiritual and meaning dimensions
of dying and death? Also, since we cannot
understand other people's spiritual needs
until we have some understanding of our
own spiritual views, similar questions
must be asked of clergy: What do clergy
understand spirituality to mean? What is
their understanding of spiritual care at the
end of life? What spiritual needs do clergy
have as they seek to recognize and sup-port
the spiritual concerns of dying
people? What personal and institutional
barriers do clergy perceive to this type of
care? These questions provide a more
substantial foundation on which hospital,
hospice, and congregational clergy can
respond to dying people's spiritual needs.
Further, the Gallup findings suggest
that faith communities need to address
more effectively the concerns that people
have about what happens after death
and about matters such as guilt and forgiveness.
Because of their unique
involvement with parishioners over the
life cycle, congregational clergy offer a
potential resource for improved spiritual
end-of-life care. However, the particular
issues these clergy face in providing
such care are not well understood. What
obstacles to end-of-life care do they confront
within the communities they serve?
How can they help parishioners to prepare
earlier, in a more comprehensive
fashion, for the challenges to be faced at
the end of life? What resources do religious
traditions offer their clergy as a
basis for end-of-life spiritual support?
Chaplains working in healthcare
institutions have more training specifically
related to the spiritual care of people
who are very ill or who are dying. They
may feel accepted by the hospital staff as
part of the healthcare team.14 At the
same time, they often experience sys-temic
and personal constraints.15 What
institutional, systemic, or personal barriers
exist to impede a fuller participation
with patients in the spiritual dimension of
dying? What spiritual resources do hospital
chaplains of various faiths draw
upon in their work with seriously ill and
dying patients who have diverse notions
of spirituality?
For hospice chaplains, too, there is
a need to better understand the problems
and possibilities of providing spiritual
care at the end of life. There is a concern
that hospice care is becoming bureaucratized,
a trend that would compromise
the movement's founding ideals.16 As the
original cadre of dedicated idealists leave,
the hospice movement is increasingly
staffed by managers and therapists, and the
focus is shifting to management skills and
the values of efficiency and effectiveness
that mainstream health care demands.
Under these conditions, does the original
commitment of all hospice workers to
spiritual support of dying patients
change?17
What, then, after thirty years of the
hospice movement, do contemporary
hospice chaplains understand spiritual
care to mean? How do they measure success
in providing spiritual care? What
obstacles do hospice chaplains encounter
in maintaining the quality of spiritual
care on which the movement is based?
More pragmatically, if a hospice program
accepts that earlier referral to hospice is
unlikely and commits to deliver rapid
hospice response to patients who are
likely to die within a week of referral,
what spiritual care services are likely to
be effective? Are there ways for hospice
chaplains to better coordinate spiritual
caregiving with their hospital or congregation
based colleagues to improve continuity
of care?
Given a more in-depth investigation
of what end-of-life spiritual care
means to people, what spiritual support
they want, and what prevents the clergy
from offering that support, we can learn
what appropriate, practical responses by
clergy might be.
DEFINITION OF TERMS
I would say that spirituality is the larger
term—the more umbrella term—in
which religion or religiosity can be
encompassed . . . There's an element of
the unknown, of the mystery. Whether
it's God or Higher Power or Nature or
human psychology, there's an element
of the mysterious, and there's a fulfillment
in seeking that mystery or exploring
that mystery. Now religion, for me,
is more formal, doctrinal; with prayer,
communion, ritual. There's an external
expression and an accepted structure.
—a chaplain
Spirituality asks what is the most
important thing for people in life. What
is it that keeps them going? What is it
that has provided the spark in life for
them? When they can't come up with
the answers themselves, to whom do
they turn to try to make sense out of
what's happening to them? Religion is
. . . how we express that spirituality. It's
a group of like-minded people that
choose to worship together, be together,
to reach out to each other and to
support each other when we need it.
—a chaplain
Those words don't mean much to me.
—a patient
In the West, the word "spirit" traces back
to the scriptures of Israel. The spirit of
God refers, literally, to the fiery blast of
the desert wind, the in-spiriting breath of
God. For Judaism, Christianity, Islam,
and other religious traditions, an animating
spirit gives people direction, uni-fies
their experience in community, and
transforms their lives.
Yet we live in a religiously pluralist
society that also includes those who are
profoundly skeptical of religious belief;
others who, while sympathetic to religion
in their private lives, fear it as a profoundly
divisive force in our public lives;
and others whose dogmatic beliefs provide
little room for other opinions. This is
true of healthcare professionals as well as
patients. So what do we do with religion
in health care? Generally, in the world of
health care, as well as in our larger culture,
religion is seen as a private matter.
Remarkably, over the past generation
the word "spirituality," which forty
years ago was largely a technical term
within Roman Catholic circles, has
become a word of such broad usage that
it implies a common sense meaning that
no one can quite define. If religion often
seems to have taken on ambiguous connotations
today—wholesome for many,
suspect for others—spirituality is usually
used in a more optimistic and positive
way. To be a spiritual person—that is, to
have a spirituality of one sort or another—
is eminently a good thing, almost as unassailable
as motherhood and apple pie.
Many people equate spirituality
with religion; to them the spiritual seems
to pertain to their worship life or their
membership in a particular faith tradi-tion.
For them spirituality can be appropriately
expressed and experienced only
through a faith community. However,
even though they are conceptually related,
these words are not synonymous. In
one sense, spirituality is the broader term.
One's spirituality may be defined simply
as the characteristics and qualities of
one's relationship to the transcendent.
One person may call the transcendent
God. Another person may live in relationship
with the transcendent and refuse
to personalize it or call it God. Even an
atheist has a spirituality, because an atheist
searches for personal meaning and
value in light of his or her rejection of a
transcendent source of meaning and
value in life. In this way everyone may be
said to have a spirituality.
By contrast, a religion is a specific
set of beliefs about the transcendent,
usually in association with a particular
language used to describe spiritual experiences,
and a community sharing key
beliefs, as well as certain practices, texts,
rituals, and teachings. Not everyone has
a religion. We've all heard someone say,
"Oh, I'm not religious, but I'm very spiritual."
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Second Opinion #10
Publisher: Park Ridge Center, Chicago
Date: April, 2002.
ISSN: 0890-1570
112 pages.
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ACKNOWLEDGMENTS
The project Spiritual Care at the End of Life:
Challenges for Hospital, Hospice, and Congregational
Clergy involved a number of people.
I especially want to thank Paul Numrich
and Gail Glicksman, who conducted the field
research and who, along with Philip Boyle,
offered insights that have been incorporated
into this report. Special thanks must be given
to Reverend Roy Brown of Progressive Baptist
Church in Aurora, Illinois, for his many
important insights into the role of the clergy
and church in the African-American
experience of end-of-life care. Also, thanks
to Andrea Kydd of the Cummings Foundation
and Wayne Ramsey of the Fetzer Institute for
their patience and their support of this
research. Finally, most heartfelt thanks to the
clergy, patients, and family members who
gave so generously of their time.
—E. R. DuBose |
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