A Special Report:
Spiritual Care At
the End of Life
| by EDWIN R. DUBOSE |
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Finally, the diverse nature of our
society represents a challenge to hospital
and hospice chaplains. Several chaplains
noted increasing contact with staff,
patients, and families of different cultures,
whose religious or spiritual beliefs
and values can differ from those of the
clergy person. They admitted not knowing
or being unsure of what is meaningful
to people of another religion. Can
patients or staff members of other religions
expect a clergy representative of a
particular tradition, typically Christian,
to be helpful in dealing with their spiritual
issues at the end of life? Sensitivity
to and respect for this diversity are
necessary since values can vary so widely
regarding the understanding of death,
the appropriate way to discuss negative
information, the role of the family in
decision making, and other issues that
chaplains may encounter.
INSTITUTIONAL OBSTACLES
The widespread cultural conversation
in American society on autonomy
and "a good death," which focuses on
the individual person as the unit of
authority and action, ignores the power
of the hospital as an institution and
bureaucratic system—one that shapes
the dying experience in particular ways.
As other examples of institutions and
bureaucratic systems, hospices and congregations
also shape the way in which
people experience death. To appreciate
why some spiritual needs remain
unmet, we must recognize the institutional
factors that shape the way spiritual
care is provided in the hospital,
hospice, and congregational settings.
The Hospital
There are a number of obstacles that the
hospital presents to chaplains. Some are
obvious: the rhythms and physical features
of a healthcare institution establish
the terrain in which pastoral care occurs.
There is a great deal of diversity among
the patients and families, and among the
staff. There is limited time, space, and
privacy available for the encounters
between chaplains, patients, and families.
Patient rooms are typically shared, so
that staff or visitors frequently interrupt
conversations. Often the chaplains' work
takes place in the halls or waiting areas.
In addition, a good amount of the chaplains'
time is taken up in administrative
functions, such as paperwork, securing
patient valuables, providing information,
or answering questions.
Adequate pastoral care staffing and
support is another issue. Chaplains
reported on occasion that they felt sometimes
overwhelmed by their work; for
several these feelings were most acute at
times of patient deaths. The language
with which chaplains described their
work was revealing. "Madhouse," "one
big ICU," "another busy night," "I feel
like a 'lone ranger,'" and "crazy" all were
used by chaplains to describe events during
their shift. This language indicates the
chaplains' feelings of stress and overload.
Another obstacle for the chaplains
is an outgrowth of the patient's phenomenological
experience of the hospi-tal.
One chaplain described the patient's
experience as a combination of a sojourn
in a foreign land and a sentence to jail.
The chaplain is interacting with someone
who finds herself in a strange environment,
populated with people speaking a
different language, with different customs.
Moreover, the patient is usually
not there by choice, and has given up her
identity markers: clothes, freedom, and
routine. Thus, because of his association
with the institution, the chaplain
faces a certain amount of suspicion—to
whom is his principal allegiance, the
patient or the hospital? At the same time,
the presence of the clergy offers many
patients and families a symbolic ally in
this alien place. Establishing trust among
the chaplain, the patient, and family is a
key element in spiritual care giving.
Other staff can create obstacles for
clergy in providing spiritual care for
patients and families. With other members
of the medical team, or with other
hospital personnel, chaplains we
observed encountered problems in communication,
such as occasionally not
being informed of a patient's status. This
lack of communication was not apparent
in the hospice setting. However, in both
locations chaplains are to some extent
dependent on other staff for referrals,
since the chaplains cannot routinely visit
all new admissions. Staff, especially nurses
(and in the hospice, social workers),
play a role in assessment of people who
have spiritual needs; to a large extent this
referral system depends on the relationship
between the staff member and the
chaplain.
An important observation, confirmed
in an interview, is the frustration
that chaplains experience when patients
are told "so late" that they are dying.
The chaplain knows the medical prognosis,
but when the physician will not
inform the patient or family, the chaplain
is hindered in the kind of care she can
provide. Other staff run the risk of unwitting
disclosure and must deal with a
patient's anxiety. Occasionally, staff,
patients, and family become caught up in
relationships of mutual pretense—all
sides know but pretend otherwise.
Finally, the strain placed on hospi-tals
by financial constraints affect pastoral
or spiritual care programs as much as
other departments. The pressure to be
more cost-conscious and efficient, to find
new ways to do things, often means doing
more with limited staff.
The Hospice
Within the hospice, these obstacles seem
less prominent, perhaps because the
organization is smaller, with many fewer
disciplines and a more focused mission
than the hospital. Perhaps because the
hospice philosophy emphasizes sharing
responsibility for spiritual care with the
hospice staff and the patient's family, the
load is not primarily on the chaplain's
shoulders. Hospice staff seemed more
familiar with and supportive of each
other. Several team members noted that
the chaplains provided spiritual support
to them, performing weddings, funerals,
and baptisms, and serving as a spiritual
leader in their lives. Intra-staff conflicts
occurred more often between care
providers in the hospital.
Although the average hospice
length of stay ranged between 20.2 and
41.4 days during the study period, the
median length of stay consistently was
just over nine days. However, hospice
chaplains and staff spoke of their frustrations
at not having more time with
the patients. While the hospice chaplains
also speak of being overextended,
they seem able to spend the time to
achieve more intense interactions. Other
factors, of course, contribute to this perception.
The nature of hospital care lends
itself to shorter stays, and the nature of
the hospice patients' terminal conditions
likely supports an emphasis on the quantity
and quality of the interaction. Also,
hospice chaplains often visit patients in
their homes, a setting in which the
patient may feel more comfortable or
confident.
One hospice chaplain recognized
that his hospice culture was predominantly
white and middle class—that while
it served diverse patients, the staff needed
to continue to learn how other religious
and ethnic traditions deal with death and
how hospice can be a resource in supporting
those customs and practices.
The attitude toward death appears
to be different across the three institutions.
Two hospital chaplains noted that
they are becoming familiar, but not comfortable,
with death; that they are afraid
that they will forget the details of the
cases they experience. The main focus of
hospice care is the end of life—death is
not the enemy as it might be in a hospi-tal
or a congregation. This makes a pro-found
difference in how hospice workers
understand and carry out their work. It
makes a dramatic difference in their feelings
and responses to the people for
whom they care. One of the hospice
chaplains was part of a hospital-based
Clinical Pastoral Education (CPE) training
program. His fellow CPE students
criticized him for accepting death as a
part of life, for talking about death as a
matter of fact, and even talking about it—
at times—as a welcome friend, releasing
some individuals from their suffering.
To the other CPE trainees, many of
whom had years of experience in congregational
ministry, death was the
enemy.
That death seems typically to be
construed more as an enemy in the hospital and the congregation and more as a
friend in the hospice certainly makes
sense. Hospitals are institutions largely
devoted to the medical model of aggressive
attempts to cure illness or restore
function. The widely known difficulties in
shifting from cure to care were apparent
in the hospital studied. Hospital chaplains
in many ways are in the center of
this shift, given the nature of their role as
religious representatives and their institutional
role assignments. Hospice chaplains
operate in an atmosphere in which
death is in the picture; the patient's life is
heading toward an inevitable demise—
although we should note that even in
hospice there are cases where family
members try to shield the patient from
the awareness that the disease has progressed
to a terminal phase.
The Congregation
The one area of ministry that scares the
heck out of me is this right here [ministering
to the dying].
—congregational clergy
What do folks think and worry about as
they near the end of life?
—congregational clergy
Out of a deliberate approach, it's premeditated,
I am not at every bedside;
and I'm not going to try to be. I work
through my associates and try to apply
myself where I am needed the most. It's
a triage ministry. There are members
who resent that. And I was told last
night of a lady who is in surgery now
who called on one of the associates
with the instructions not to tell me,
because if I wasn't going to be there,
she didn't even want me to know. But
that's the practice I put in place and
despite those kinds of drawbacks, I'm
not inclined to change it.
—congregational clergy
In our observations and interviews, congregational
clergy were the least prepared
by training for intense, sustained
support of congregants facing death.
Unlike their chaplain colleagues who
work so closely and so often with seriously
ill patients and their families, the
congregational clergy of course have
different roles and responsibilities.
There were some signs that in the congregational
setting, clergy functioned
as chief executive officers of their institutions,
coordinating and delegating
care to staff and volunteers. In this
management model, their attention is
more immediately directed to the
socialization of the young, and developing
and fostering religious identity
and involvement, because without these
activities the congregation and religious
life would not continue. As one
senior clergy said:
There's preaching that you've got to
prepare; there's studying that you got to
do in order to teach and preach; there's
meetings because there's the daily
administration and committees of the
congregation that meet; then there are
the inevitable interruptions of a funeral
or someone coming in needing to
talk for counseling. There are the many
different facets of congregational life
such that it's impossible to expect to be
totally present to these people as a
care provider.
Acknowledging that the symbolic presence
of their "office" carries a certain
value or significance for congregants,
because of their busy schedules and the
various demands placed on them as
clergy leaders, they delegate care for
the seriously ill to other staff members
or lay volunteers. In the congregational
settings we studied, the senior clergy's
interaction with congregants intensifies
as the person's condition deteriorates,
culminating with the most intense time
spent as death approaches or spent on
bereavement care.
From the clergy's point of view, this
approach to end of life care is a necessary
allocation of resources. One rabbi said:
What I've learned in the congregational
realm is that we really cannot do
as congregational rabbis what I think
would be any kind of sustained meaningful
pastoral care. I call us the "spiritual
ambulance chasers." No, we're
worse than that, we're really what
should be called "spiritual EMTs"
[emergency medical technicians]; we
are short-term care providers. We have
to either try and deal with the crisis, or
we're not able to deal with the crisis.
This clergy person leads a congregation
of about 1,000 families, and sustained
support and care for the seriously ill and
their families are impossible given his
other duties. His pastoral care takes place
when the hospital discharges the patient
to home and again when a congregant is
in the acute phase of dying. In between,
lay people provide a wide range of supportive
counseling and other services to
the sick in the congregation.
A Protestant pastor noted that
"what I want our congregation to sense is
that God has gifted people for ministry;
some of them are on staff, some of them
are not. If it happens to be you received
ministry from me, that's fine, but mine
isn't any better than anybody else's."
Rather than depending on the pastor's
presence, in Christian theological terms
congregants should look to the ministry
of the word. Otherwise, if the care ministry
of his church revolves around him—
"Boy, thank God, pastor, you're here,
you know, you've ridden in on your white
horse to rescue us. Where would we be
without you?"—the church would be
unable to fulfill its mission as he sees it.
As a result, this pastor tries to cultivate
the cultural expectation that "it doesn't
really matter whether [I'm] there or not."
Given this approach to his ministry,
the pastor viewed the 1997 Gallup
finding as very positive. Differing with
Gallup's interpretation that the clergy
need to "wake up," he believes the finding
shows the empowerment of the laity
and the fact that nonclergy are important
to people. At the same time, he realized
that he has become a bit more insulated
from the lives of people broadly, as he has
moved more and more into a senior pastor's
role, so that other staff members
who work with certain groups go more
deeply into those relationships. Due to
his role as senior pastor, dealing with so
many people, so broadly, he cannot delve
so deeply with the few who are seriously
ill in his congregation.
Despite the genuine spiritual care
that staff and lay volunteers provide, the
senior clergy's approach of "empowering
the laity" to be spiritually supportive
to sick and dying congregants was not
particularly well received by the sick
themselves. For example, Mrs. B felt that
while individuals who are appropriately
trained could provide counseling and
support, there was a specific threshold—
of serious, life-threatening illness or of
prolonged duress from a chronic caregiving
role—that challenged individuals'
spiritual beliefs and values. She felt that
at this significant level, individuals and
their caregivers required a visit from
someone who shared their belief system.
Mrs. B acknowledged that the clergy—in
her case an overworked parish priest—
might be too busy to visit all those who
are ill. She mentioned that her parish
sends lay people to distribute the
Eucharist. However, she described these
individuals as "technicians," who do not
notice any broader needs among those
whom they visit. She mentioned that the
hospice sends a "counselor" to talk with
her. However, she indicated that she
needs to talk with a priest—or someone
well versed in her own religious tradition—
who could reassure her that she is not
being punished by God and that God is
still with her.
Mrs. B vowed that when she feels
better, she would walk over to the parish
and tell the priest that he has been
neglecting both her and her husband.
She wants the priest to know that she feels
that her husband—despite his resolve to
be optimistic in the face of death—needs
to talk with a priest. She wants to tell the
priest that she feels that she needs spiritual
support and counsel from someone
who shares her faith tradition. She
believes that she merited such support for
a while because of her prolonged duress
from caregiving, which she blames for
bringing on her recent heart problems.
Her recent bypass surgery made her face
her own mortality and vulnerability, and
made her question God and doubt God.
Mrs. B feels that her parish priest does not
recognize the long-term needs of caregivers
or the acute needs of individuals
recovering from significant illness. She
implied that the priest got involved only
when an individual is actively dying, or
after the death.
Indeed, generally the congregational
clergy saw themselves most clearly
involved toward the end of a
parishioner's life. As representatives of
the church and its tradition, some clergy
felt that it was their responsibility to
shepherd the parishioner through the
active phase of dying. Senior pastors
might delegate visitations to subordinates,
but when death entered the room,
they wanted to be there. This approach
angered some patients and family members:
while patient and family deferred to
visiting associate clergy or to lay "counselors"
or "Eucharistic ministers," they
wanted the senior clergy's presence.
Patients expressed anger that the pastor
was not accompanying them on their
journey, and was showing up toward the
end of their lives almost "as the messenger
of death." Clearly, the role of the
clergy person, the titular "leader" of the
person's congregation, is a significant
one for people facing the end of life.
They may appreciate the limits on that
clergy person's time, but under the circumstances
in which they find themselves,
they want tangible expression of
the religious leader's commitment to
them. While a complicated set of variables
is involved—including the patient's
and family's views about organized religion,
their previous experience with clergy, personal dynamics, and so forth—
peer support is not enough. While the
clergy assume varying significance in
different religious traditions, in a situation
where the clergy is endowed with
particular authority, such as Roman
Catholicism, a layperson—even a parish
nurse—might be a poor substitute to
those who feel a strong need for the
special service that only an ordained
priest can provide.
In this study the trend among congregational
clergy to delegate care for the
ill to lay ministers or congregational volunteers
was not well received by congregants
facing serious illness. There were
expressions of anger toward the senior
clergy for delegating this responsibility.
While the clergy spoke of "empowering
the laity" to provide spiritual support for
the seriously ill, congregants' anger may
represent a call for clergy to reconsider
their essential pastoral or spiritual care
responsibilities.
PERSONAL CONCERNS WITH
END OF LIFE
How do I talk to someone about dying?
Do I wait for the patient to mention
his/her diagnosis and prognosis? Am I
supposed to raise the issue? Will it be
too upsetting? Do I have to talk about
death? What do I say to someone who
is afraid? Is it all right to talk about what
I believe about the end of life?
—congregational clergy
How can I provide an environment in
which people feel freer to speak about
the concerns on their minds? How do
I give people permission to talk about
tough questions?
—a chaplain
Congregational clergy expressed
some anxiety about care for the dying,
especially in knowing what to say. Others
said they rely on techniques, sticking to
prayers and scripture reading. For example,
one congregational clergy felt a
responsibility to ask directly about salvation.
Others said they let the words of
Scripture comfort and elicit a response
from dying patients; they, as one pastor
put it, "let God act."
Often the clergy's own anxieties or
fears about dying affect their care and
support for dying people. They may seek
to control death's sting in many ways. It's
common for people to avoid topics that
make them feel nervous or uncomfortable;
many worry about finding the right
thing to say. Some chaplains or congregational
clergy find a way to distance
themselves from death by wrapping
themselves in set prayers or formal rituals. Some just talk a lot as a way of feeling
more in control of the situation.
These responses become emotional
shields, denying patients the recognition
and companionship they need by
imposing on the dying what we ourselves
think they need or want. Once clergy
become comfortable with their own concerns
about death and dying, they will be
better able to hear the other person's
expressions of anxiety, to let the patient
set the agenda and determine the pace
for her own dying. If the clergy can reflect
on their personal concerns about death,
it will not be a matter of giving people
permission to talk about tough questions,
but of simply being present to hear
what the dying person has to say.
It is helpful to distinguish between
a professional and a personal agenda in
considering spiritual care at the end of
life. In a professional agenda, one may
be more concerned with understanding
the processes of adjusting to death and
dying and acquiring appropriate helping
skills to make this process easier for
patients. However, we each have our
own personal issues and concerns with
death, issues that spring from our experiences
with the deaths of others or
from the contemplation of our own
demise. From time to time we may find
that the personal intrudes and makes it
difficult to remain within the professional
role. Such feelings and grief in
our own lives can easily get in the way
and lead to self-protection designed to
ensure that the patient or family does
not affect us deeply. Time needs to be
given to identifying and understanding
those parts of our personal agenda that
make us uncomfortable in the face of
death.
COMPONENTS OF SPIRITUAL CARE
Becoming comfortable with one's own
end-of-life issues is a necessary process
for clergy who care for people facing
death. At the same time, by reflecting on
the social and institutional obstacles that
inhibit care and support for people as
they strive to integrate the starkness of
death into their lives—to revivify themselves
in the face of death—clergy may
well become more confident in caring for
dying people. Based on observations and
interviews in the hospital, hospice, or
congregational setting, there are five ways
to provide such end-of-life care. These
components of spiritual care are intertwined
and occur concurrently, but we
separate them for the purpose of discussion.
Just as the spiritual needs of people
facing life-threatening illness vary from
person to person, there are no cookie-cutter
approaches to spiritual care at the
end of life.
RESPECT FOR THE DYING
PERSON'S STORY
Respect for persons is a common
notion in healthcare ethics these days,
but is still one that needs review when
we discuss spiritual care for dying people—
it is fundamental to the other components
of care. Reducing the experience
of dying to a manageable problem does
not show respect. For example, the
Kübler-Ross thesis that the dying pass
through stages can become a way to
deny their self-determination in interpreting
the meaning of their own death.
Out of respect, we should pay attention
to what the dying tell us; any further
intervention should fit into the patient's
interpretation of the illness. The experiences
of the dying are best understood as
stories, and we show respect for the
dying person by taking these stories seriously
as an expression of their spiritual
values, preferences, and needs.
The Story
Recent years have seen a proliferation of
a multidisciplinary literature concerned
with story. A precise definition of story
appears to be elusive.26 For our purposes,
there are several aspects of story that
seem fruitful. First, stories meet "the
human need to bring the past and future
into coherence (even if it is only illusory)
with the present . . . Narratives reassure
us."27 They do so by providing people
with a sense of connectedness in their
lives, imposing order from without on the
natural chaos of experience. Second, stories
carry personal meaning to those who
live, create, or interpret them. They
become a mode of self-declaration, in
which the patient demands a hearing, a
recognition, from others: "This is my
story, I'm telling you about me." Finally,
stories also function as a mode for self-understanding.
In the relationship
between the patient storyteller and the
caregiver, the patient can test out his
ongoing narrative, gaining perspective
to make the rendition more meaningful.28
In the process spiritual issues will
emerge.
These issues do not have to be dramatic;
often they are not easily perceived.
However, if the caregiver allows it, the
patient's stories enable her to review and
integrate aspects of life in a new perspective. Issues such as anger, anxiety, or
bitterness, and passion, praise, prayer,
pride, reconciliation, or sacrifice will surface
to become topics for further story
telling. The stories foster companionship
between the caregiver and patient.
The trust and intimacy that mark such
companionship takes time to develop,
time that almost everyone noted was
never adequate. The willingness, however,
to listen and avoid judgment and a
sense of humor foster the conditions for
storytelling.
The idea is not a novel one. Spiritual
caregivers encourage reminiscing;
they help the dying patient and family
tell their stories. This aspect of spiritual
care requires going beneath work histories
and photo albums. It uncovers the
transcendent decisions that committed
dying people to some path in life—one
that liberated or thwarted them at significant
points—and enables them to
name those persons with whom they
share an awareness of value in their
lives. Even with religious people, it is
important to peel back their religious
practices and uncover these elements
of their story. The payoff is to help the
dying become more aware and more
appreciative of the values and relationships
that shaped—and still shape—their
lives. It may be valuable to encourage
those able to record their stories—by
audio or videotape or in writing—so family
and friends inherit a record of the
loved one.
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Second Opinion #10
Publisher: Park Ridge Center, Chicago
Date: April, 2002.
ISSN: 0890-1570
112 pages.
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