A Special Report:
Spiritual Care At
the End of Life
| by EDWIN R. DUBOSE |
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A twenty-two-year-old man had come
in earlier with serious trauma from a
motorcycle accident. The patient had
been in surgery for three hours by that
time, and the medical staff straightforwardly
told the family that the situation
was grim. Ten family members
were gathered in the waiting room,
most of whom spoke only Polish. Mary,
the hospital chaplain, was speaking
with the family through a translator.
Immediately as we entered the room,
the uncle asked: "Are you doctors?"
They expressed anxiety that it had
been so long without any word, and
[said] that they wanted to speak to a
doctor. Mary explained that we had
no news and that, in some cases, it
takes a long time.
An hour or so later Mary told me about
the meeting between the doctor and the
family. She said the doctor informed the
family that the patient was not going to
survive. The family reacted very emotionally and vocally, which she thought
was a healthy expression of grief. When
the doctor mentioned organ donation,
the father vehemently opposed the
idea. Mary told me that she "said a lot
of prayers with them."
Mary paged the on-call Catholic priest
to come for the Sacrament of the Sick
[a ritual for the sick or dying, once
popularly known as last rites]; we
joined while the ritual was in progress.
The immediate family was present, and
they participated fully, following the
priest's instructions and reciting the
appropriate responses in English. They
also said the Lord's Prayer in Polish
when encouraged to do so by the
priest. I found their compliance to be
in sharp contrast to their hesitancy in
dealing with Mary earlier. This ritual
was clearly supporting the family's
transition and a commissioning to eternity,
not simply a healing ceremony.
—hospital observation
This story illustrates two forms of
spiritual care that have a powerful effect
and represent the priestly function that
clergy offer to patients, families, and staff:
one is prayer and the other is ritual.
Prayer is a significant feature of the religious
and spiritual lives of the patients
and families we observed and interviewed
across the three settings. Facing a life-threatening
illness or an impending
death, people seem to feel estranged
from life's mainstream: "I feel very isolated,
even though people have been
great." Prayer is a means of spiritual support.
Whether the patient was an active
member of a religious community or not,
whether they described prayer to a transcendent
God or spoke of words "thrown
out there," prayer was mentioned by
everybody as a way to express important
words that need to be said. Whatever
the words one uses, the time of prayer
represents a time set aside in the ordinary
day during which they can express their
innermost thoughts.
Along with prayer, ritual serves
another important function as a transitional
activity in spiritual care at the
end of life. The SUPPORT study failed
to confirm the conventional wisdom that
better communication and respect for
autonomy will make a "good death" possible.
Larry Churchill argues that communication
and advance directives will
not lead to the kind of death that the
SUPPORT researchers find desirable,
specifically, one not mechanically supported,
painful, or prolonged.33 People
want aggressive care until the end. To
change patterns of dying, we need rituals to help with the various transitions
that occur over the trajectory that is the
end of life.
Recall William F. May's description
of the deeper kind of problem in life,
where the question is not "What are we
going to do about it?" but "How do we
behave towards it?" These are the problems
that you don't simply solve and put
behind you. They don't admit to technical,
pragmatic solutions. This second
question poses a deeper challenge that no
specific policy, strategy, or behavior can
dissolve because the problem, frankly,
will persist. It requires behavior that sensitively
and appropriately fits the challenge
that won't go away. According to
Marcel, this type of problem resembles a
mystery more than a puzzle: "It demands
a response that resembles a ritual repeated
more than a technique applied."34
Ritual is sometimes dismissed as
habitual and essentially meaningless
activity. In spiritual care, it is "the established
form of a ceremony."35 Ceremonies
allow participants to dwell in meanings,
creating integration and wholeness, community
and order, in the context of the
particular religious tradition. Rituals
divorced from religion—perhaps solitary
ritual acts—can serve similar purposes.
They may put less emphasis on community
and more stress on the self-defining
meaning. Rituals give to ceremonial
events an order to follow. This ordering is
especially useful when the life events
being interpreted are stressful, involving
passages into the unknown, uncertain,
or dangerous.36
The importance of ritual activity is
very pronounced in end-of-life care. Rituals
create a special time and space and,
thus, offer a way for participants to experience
the mystery of human existence
while transitioning from life to death.
Clergy purposefully create conditions
for that experience. Whether they take
place on a formal or informal basis, rituals
are crucial in restoring a sense of
order and meaning to the experiences of
patients, families, staff, and the clergy.
For particular patients, hospitalization
exacerbates the threat that their illness
represents to their ordinary lives. For
those patients enrolled in the study under
hospice or congregational care, their illness
"marked" or disrupted their existential
and social lives in tangible and
intangible ways. Ritual activity seemed to
be an effective way to help restore a
sense of control or order to their lives.
Ritual did not eliminate the illness, but
made the "fact" of it more bearable.
Tom Driver writes, "Rituals are primarily
instruments designed to change a
situation: They are more like washing
machines than books. A book may be
about washing, but the machine takes in
dirty clothes and, if all goes well, transforms
them into cleaner ones."37 Ritual
activity consists of a series of transitions,
taking one out of the self and bringing
him back again, helping him to a different
understanding or perspective on his
situation.
For example, a family gathered in
the hospital following their father's serious
heart attack. When told of his "grave"
prognosis—a term that conjures up images
of death, and in fact the man died several
hours later—the family clearly
expressed the anger, fear, confusion, and
grief associated with this experience. Each
person, to some extent, felt the disruption
of their normal life caused by such a sudden
and devastating event. The chaplain
on call offered his presence and prayer,
but he was rejected. When the family's
priest arrived, prayed with the family,
and led them through the Catholic ritual
of anointing the sick, a sense of order
was restored. The ritual interaction
between family and priest served to control
potentially overpowering emotions,
allowing for their release, while restoring
order to the situation. One interesting
feature of this observation was the public
nature of the prayer and anointing ceremony.
While ritual activity may occur
between two parties—the patient and clergy
person, for example—often the ritual
activity has a public nature. Thus, ritual
has a community function.
Because rituals are matters of display,
they are interactive and social. As
such, rituals establish or enhance solidarity
and relationship among the participants.
Ritual's rhythms, displays, and
other techniques can summon energies
together, fuse them, and increase their
power, steered by norms that guide their
expression. While their loss was all too
real and disruptive, the family in this scenario
was able to experience the sudden,
unexpected death as a family, in a way
that acknowledged what they were going
through while reminding them of their
bonds and their history together. In this
case, while it was not the hospital chaplain
who facilitated this dynamic, the words
and actions of a clergy person, the parish
priest, greatly benefited the family.
Ritual acts offer a sense of familiarity,
meaning, and reasonableness to
events and feelings that otherwise disrupt
the fabric of our "normal" experience. In
the case of death, of course, these feelings
can be very upsetting. Traditionally, rituals
that accompanied death and dying
were guided by socially sanctioned figures,
such as clergy. They involved family
and community members, and offered
participants an opportunity to say goodbye,
to express themselves through
prayers or other acts. Rituals allowed the
dying to give final instructions or counsel
to survivors. In a sense ritual activity
represented a ceremonial preparation
for death in which the dying person was
never alone.
Can clergy help the nonreligious
person, or a person from a non-ritual tradition,
through prayer and ritual activity?
Although the element of trust in their
relationship is crucial, the lowest common
denominator of ritual is a rite of passage
in which the participants are taken
out of and then brought back into their
everyday lives, for a common purpose. As
a result, rituals promote solidarity among
participants, creating a community bond
and validating the importance of their
relationships with each other. Rituals are
a means to recognize the patient as person.
They enhance communication by
providing a normative way to talk about
stressful, life-changing events. Dying is
dangerous to the modern sensibility; rituals
give people confidence and hope in
the face of that danger. They give us
something to do in the face of feelings of
powerlessness. Rituals, therefore, provide
us with the power of active participation
in the course of events.
As people near death, they enter
what may well be the most vulnerable
and potentially isolated period of their
lives. For many people death is alien, to
be feared and resisted. The presence in
a ritual of those whom the dying person
trusts makes several things clear. First,
dying is not an individual and isolated
event; it is a community event and
responsibility. Further, dying is not an
alien part of life. Finally, dying within
community can be life giving because
immediate human needs—being greeted,
touched, heard, and accompanied—are
addressed at this crucial time. The intent
of prayer and ritual is not to say magical
words to open the door to an afterlife
that would otherwise be closed. The
intent is to let the dying know how
important they are to family, friends,
and other caregivers, and how important
their emotional and spiritual well being
are as they make the transition from
life to death.
Whether earlier or later, there are
ways to create the conditions for effective
transitions along the end-of-life trajectory.
Megory Anderson describes the
importance of establishing a special space
in the patient's home or hospital room.38
She suggests cleaning the area to create
a sense of purpose and participation.
Special touches, such as flowers and an
open window, add to the sense of space.
The important task is to create movement
from outside to inside, and to create borders
with actions that signify transition by
washing hands or taking off shoes. The
patient's bed becomes the center of the
sacred space, surrounded by family,
friends, and caregivers.
Anderson also emphasizes the
importance of the senses in ritual activity.
Sight, sound, and smell all play a
part. Visual images are important
reminders of who we are and of God's
presence. Why have the television on?
Put something meaningful in the
patient's line of sight. Pictures, candles,
or prayer objects offer comfort and reassurance.
Silence, the spoken word, and
music can be powerful. Minimize phone
calls; ask people outside to be quiet.
Out of respect for the patient, there
should be no idle chatter. Consider the
sense of smell. Institutional odors are
distinctive; masking them with "sweeter"
smells may be overwhelming to the ill.
Yet, smells do evoke memories. Incense
is mentioned in Scripture—Psalm 141:
Let my prayer be counted as incense
before thee. Lighting and extinguishing
candles can symbolize a beginning and
end to the ceremony.
As Churchill describes the medical
and hospital ritual of cardiopulmonary
resuscitation in his article, there are rituals
that may work against better care of
the dying and serve as challenges to clergy
offering spiritual care. For the components
of spiritual care to become
ritualized they must be part of the customary
way of caring for the dying—one
of the first things that comes to mind,
rather than an alternative that is considered
after all else fails.39 Too often, now,
spiritual care for the dying occurs after
medical care fails. It needs to be integrated
into patient care plans, early in the
end-of-life trajectory.
COOPERATION AND COORDINATION
When I was growing up I was a member
of a Lutheran congregation. I felt
close to that pastor and his wife. He
died a number of years ago. I don't feel
a connection to the new pastor or to the
congregation.
—a patient
I have good relationships with the hospital
chaplain. One night a parishioner
was badly hurt in a car accident. The
chaplain helped his wife call me, oriented
me to what was going on when I
got there; he helped, then faded out,
and respected the unique relationship
I had with these people. I'm very
respectful of them [chaplains].
—congregational clergy
Seriously ill people often move back
and forth from their home to the hospital,
to a step-down unit or a long-term care
facility. These moves may occur over
many months and occur several times,
until the person enrolls in a hospice program
or death occurs. For patients who
are not religious, or who are separated
from their congregation, the clergy can
still represent continuity with values that
may help them in their need for recognition,
companionship, hope, and meaning
in their illness. However, while clergy
spoke of good relations with colleagues
outside of their own arena of care, there
is some evidence that hospital, hospice,
and congregational clergy are not wholly
coordinated and interactive.
There are factors that work against
the continuity and coordination of spiritual
care. As we have seen, personal and
institutional issues work against such
care. Overworked clergy, with little time,
stretched in many ways, tend to concentrate
on the demands of their particular
care setting, and leave others to concentrate
on their own setting.
In addition, the division of labor in
clergy ranks between health care and
congregational care may foster turf issues.
For example, healthcare chaplains are
trained to be "patient-centered," open to
and inclusive of people with diverse spiritual
and religious beliefs. Congrega-tional
clergy are trained to be
"tradition-specific"; their approach to
care in that sense is more narrowly
focused. This difference creates tension.
As one minister said, "I don't want some
Unitarian chaplain to corrupt my Baptist
parishioner. I have to evangelize to be
faithful to my tradition, and be here for
you. That's what I do for you." How can
these two clergy persons work together to
better coordinate care?
Another example: A hospital CPE
student develops a relationship with a
patient and family who are members of a
particular faith community. Because he
or she is walking the acute care journey
with them, that chaplain, not the congregational pastor, may become the one
to whom the patient looks for care. If the
family asks him or her to do the funeral,
will the community clergy person be
upset? What is the chaplain's role in
bereavement care? Should the chaplain
hand off the funeral and follow-up care
to the congregational clergy person? How
can they work together to develop the
most comprehensive care plan possible
for end-of-life and bereavement care?
Because of confidentiality and privacy
issues, hospital and hospice clergy
feel that they must ask whether the
patient wants them to contact the
patient's congregational clergy. This
respect for patients' wishes is understandable;
there are many patients who,
for various reasons, do not want their
clergy to know of their illness. Also, due
to the particular nature of relationships
within congregations, congregants with
serious illness may not want others in the
community to know of their situation.
How can clergy cultivate the relationships
that will reassure patients and families
that their spiritual needs will be
met, across settings, throughout the end-of-
life trajectory?
If a patient had an affiliation with a
religious community and a relationship
with its clergy, there was agreement in
our study that congregational clergy were
the best to support the sick person and
family.
What I basically try to do is once I
know a parish clergy person is in there,
I try to get out of it and support the
parish clergy as much as I can. This is
the place where [the patient and family]
live. They've chosen to go to this
church. They've chosen this guy as a
pastor. This pastor has come to be with
his flock, and I'd better be able to provide
the resources to this pastor as
best as I can that's going to help him or
her get their parishioner to where their
parishioner needs to be. But at least to
get information out to their pastor so
they can do their job, hopefully as
effectively, and probably more effectively
than what I can do, because he or
she has the benefit of prior relationship.
I don't.
—hospital chaplain
Both chaplains and congregational
clergy recognize the importance of
this prior relationship. One congregational
clergy described visiting the family
of a hospitalized parishioner gravely
injured in a car accident.
It's personal relationship . . . If I been
the chaplain last night, all I would
have known was, here was an African
American man who was 60 years old
who was in a car accident, and he had
a wife who was very upset. I, on the
other hand, know parts of his story. I
married them three years ago. I
remember him breaking out in a cold
sweat during the wedding ceremony.
The faith stuff that moved them from
living together to, "this is outside of the
will of God," and the decision to get
married. And so there's a whole story
that's frequently connected with it. It's
a real strong passion for me that I'm in
ministry to real people, and not to
"things in a situation."
Another pastor spoke more
assertively of the way in which he coordinated
his pastoral support with hospital
chaplains.
I have had more encounters with hospital
chaplains than I've had with fellow
clergy and in working with hospital
chaplains, I take the position of speaking
to the chaplain and asking for the
lead role. If I am present, I do not want
the chaplain to take the lead role. I
consider that to be my responsibility,
and if it's in the case of the dying and
the family need to be talked to, I would
rather do that because I would want it
to come from someone they have a
relationship with, rather than a
stranger . . . I do get cooperation from
them [chaplains]. I find most of them,
as long as they are present, they are
comfortable, but they give me the lead.
However, other congregational clergy
spoke of some discomfort with the
hospital environment. Others seemed to
have a sense of protectiveness toward
hospitalized congregants, in some ways
reminiscent of concern for one's own
family members. At least one chaplain
noted that such discomfort or protectiveness
produces a distance between
pastor and chaplain.
A lot of times I don't see them . . .
they're here but I don't see them. But
when I do, I offer myself as hospitable
. . . "We're glad you're here. Is there
anything I can do to help you be here?"
I find—it's very interesting—I find most
congregational pastors to be very turfy.
They do not want my input.
—a chaplain
There are several ways for chaplains
and congregational clergy to know each
other. First, hospice and hospital chaplains
should be attentive when congregational
clergy visit their congregants.
Second, respecting patients' confidentiality,
chaplains should consistently ask
patients if they want their congregational
clergy contacted. Third, with patients'
permission, clergy should have followup
contacts with each other to check on a
patient's status. A fourth way is through
active participation in clergy associations.
Clergy can also work to create a
local network of hospitals, hospices, and
congregations to bring together clergy
from the different settings interested in
end-of-life issues. Sixth, chaplains might
offer to speak at Sunday school classes, or
participate in congregational worship
services, giving sermons or reflections
on the spiritual concerns of people facing
the end of life. Finally, hospital, hospice,
and congregational clergy should respect
each other, appreciating the important
work each is doing on behalf of people
facing life-threatening illness.
RECOMMENDATIONS
There are a number of points to keep in
mind when thinking about spiritual care
at the end of life.
Clergy should be alert to a range
of spiritual needs
For patients with a life-threatening
illness and their families, the world has
been turned upside down. A person's
awareness of his own mortality changes
how he thinks about his life. While
humans generally block knowledge that
they will die, facing the end of life makes
a person acutely aware that death is not
simply something that happens in the
world, but something that will happen to
"me."
The diagnosis of illness transforms
a person's story, shakes her out of the
taken-for-granted attitude of her everyday
life. The person with an illness has a new
way to think about herself, and the more
extreme the diagnosis in its implications,
the more imposing this new identity is. In
a very real sense, the new identity is one
already scripted by medicine. Medicine
hardly creates renal disease, for example,
but it creates the career of the renal
patient—it has scripted a story. Being a
person with a life-threatening illness, a
person who is facing death, carries with it
certain social expectations.
People often resist becoming the
story that medicine wants them to be.
They want something else. They want
someone who will care about them all the
way through. They want recognition of
their suffering from those who see suffering
most clearly.
Acutely ill people or dying people
want to make sense of what is happening
to them. We live our lives on a certain
map. It is a geographical map, of course,
but it is also a map of purposes—a map of
everything we have done, everything we
are now, and everything that we hope for.
Few people have a spot for cancer, renal
disease, or even old age on that map.40 Illness
requires people to redraw their
maps, requires them to incorporate these
territories, requires them to find a new
destination and a way to get there. This is
the process of making sense. How does
the patient begin to make sense of what
has happened?
The story we talk about is this new
map; the story is the attempt to find a new
destination. The curious thing about this
story as a map is that because the territory
is unexplored, patients are like the
very earliest cartographers—they are drawing
the map as they make the explo-ration.
In religious and spiritual language,
in relationship to the transcendent and to
others, they seek some means to reestablish
their identity and to transform their
experience from disorder to order, so that
they can regain some control over their
lives and perhaps over their deaths. They
want someone to care for them, to accept
their fears, and to allow them to speak the
words they need to say, in whatever way
they need to say them, without fear of
rejection or platitudes. The spiritual needs
of patients and families are for acceptance,
compassion, and understanding.
They need companionship, someone who
is willing to accompany them, to reassure
them that they will not be abandoned,
even to their death.
The clergy's role in providing spiritual
care for dying people is to provide
that companionship. Due to their office,
and their presence in the hospital, hospice,
nursing home, or faith community,
they occupy a position juxtaposed
between life and death, between health
and illness. Even though much of a chaplain's
work, in particular, would not
appear spiritual at first glance, it is such
nonetheless. Completing paperwork,
being entrusted with valuables, being
there for people and giving them permission
to talk about both mundane and
ultimate concerns, translating medical
terminology, serving as go-betweens for
patients and medical team members—
these are expressions of spiritual care. No
one else in the hospital has this unique
set of duties. Who would pick up these
duties if chaplains were removed? At
times chaplains serve as managers of a
patient's dying, orchestrating the process,
enlisting family, physicians, nurses,
and others. Through all this, chaplains
offer a unique perspective to patients,
families, and staff. In the face of death,
chaplains recall the values and blessings
that make the dying person's life meaningful,
and they help the patient reconcile
with himself and others.
The clergy should not underestimate
their symbolic power
When it comes to the end of life,
the clergy have powerful roles-priest,
prophet, communicator, translator—that
are sanctioned by our society. In this
work, clearly the figure, role, and presence
of clergy are significant. As administrators
and facilitators of ritual, for
example, the clergy demonstrate their
power of naming, articulating what others
cannot or are afraid to say, in a way
that channels the dying experience. It is
important to recognize the status and
role of chaplains: Invested with roles
that no one else in the hospital or hospice
has, they can be identified with
illness and death in ways that others
are not.
As representatives of the religious
and the spiritual, clergy offer the symbolic
presence of the congregation, too,
in caring for people facing death.
Patients who are members of faith communities
often view the religious com-munity
as virtually absent—irrespective
of how many congregational members
or hospital chaplains visit—until the
congregational clergy person appears.
When the clergy is present, the patient
sees the community as present. For
these patients, clergy represent the religious
community and symbolize God's
presence and fidelity. Clergy need not
apologize for their presence in healthcare
institutions, whether as visitors or
as members of the healthcare team.
The clergy should be available as
faithful companions to the dying
As I listen to people some of the things
I hear are that "at this point my religion
doesn't seem to offer me any support.
The priest comes by and gives me communion; the rabbi comes and teaches;
the pastor comes, and he seems more
uncomfortable than I do." I think we're
not training people who are in ministerial
positions well enough on this
issue. I think we could really educate
that minister that seems uncomfortable,
we could help rabbis, priests, or
pastors be more attuned to what their
religion offers to the dying. But there's
also just some genuine personal spiritual
needs that people have. They need
to have someone listen to them and
hold their hand and help them walk
through whatever their religious tradition
has in a way that's helpful rather
than dogmatic.
—a chaplain
Among the qualities mentioned by
patients as important in their spiritual
caregivers—genuineness, humor, flexibility,
attentiveness, empathy, and a listening
presence—one that seemed particularly
important was fidelity. Patients wanted
someone on whom they could count as a
companion through their illness. In a
way the spiritual caregiver becomes a co-sufferer
with the patient, someone who
signals that she will remain faithful no
matter what. Given the clergy's symbolic
power, to have that companion be a clergy
person to whom the patient can bare
When the clergy is present,
the patient sees the
community as present.
all is a blessing, a confirmation of God's
presence.
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Second Opinion #10
Publisher: Park Ridge Center, Chicago
Date: April, 2002.
ISSN: 0890-1570
112 pages.
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