A Special Report:
Spiritual Care At
the End of Life
| by EDWIN R. DUBOSE |
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Spiritual care at the end of life
demands a wakeup call at the
institutional level
Both healthcare and ecclesiastical
institutions must attend to the barriers
and obstacles that inhibit spiritual care of
the dying. There is excellent medical
care at the end of life and excellent spiritual
care when the relationships among
the patient, families, and caregivers are
cultivated. Building relationships of trust
between patient and caregiver is the key
to good medical and spiritual care. Building
trust takes time, however, and something
of a stable environment. Institutions
need to take a long look at the value of
spiritual care for people moving across
the trajectory of end-of-life care. There
are several questions that institutional
leadership must ask.41
Do these institutions recognize
and compensate for the strains on dying
people that exist along the continuum of
care? Institutions in which seriously ill
people receive care are in transition, revising
patient services and reshaping the
way in which these services are delivered.
Due to the forces of managed care,
patients constantly find themselves in
relationships with new physicians. As
their care needs change, so do their relationships
with clergy. Patients may move
some distance to live with relatives, to
receive care from new and unfamiliar
faces. People go through stages in their illness,
moving from home to hospital to
other care facility; they become sicker
and able to attend religious services less
often. Over the course of their illness
their congregation may engage a new
clergy person. If the person now goes
into the hospital or hospice, he or she may
not feel a connection with that clergy. If
asked, "Do you want us to call your pastor?"
the patient may well answer, "No, I
don't know her very well." Under these
circumstances, chaplains become essential.
Healthcare institutions need to provide
the resources necessary to support all
patients, particularly those facing the end
of life, as they wrestle with their illness.
Do these institutions attend to
diversity issues and staff training associated
with those issues? Cultural, socio-economic,
religious, and ethnic
differences between patients and chaplains
are apparent and can affect spiritual
care. In hospital, hospice, and congregations,
the opportunities for spiritual
caregiving are enhanced when clergy's
access to the dying person rests on trust,
and most importantly on a relationship
that develops over time. Our data
indicate that there is a benefit when
"common ground" exists between the
spiritual caregiver and the patient or
family. But this optimal scenario is not
possible in many circumstances. Even
when little is shared by the parties in
terms of language, culture, and so forth,
spiritual support is not impossible.
Patients rank empathy, warmth, sense of
humor, and flexibility as central features
of spiritual care. These factors can be
independent of "common ground."
Nonetheless institutions need to provide
culturally competent training and
support to caregivers.
It is not uncommon for chaplains to
feel frustrated and unable to find appropriate
words to respond to patients from
different religious traditions, those of no
tradition, or those who express a different
spiritual orientation. Perhaps they feel
that prayer is universally welcomed, or
that tolerance for others' spiritual beliefs
should elicit only respectful silence.
Yet the language and symbolism of
spirituality, or religion, frequently convey
vital information to the clergy caregiver
about patients' or families' inner
experience—what they are going
through emotionally, mentally, spiritually,
and psychosocially. It does not help
when dialogue comes to a halt simply
because patients and families express
what they are going through in spiritual
terms.
Do these institutions care for their
staff? Does leadership recognize the
unique stresses in end-of-life care and
provide emotional and spiritual support
for staff? Does it encourage self-care and
provide appropriate in-service opportunities
to support the caregiver?
Does the healthcare institution
integrate spiritual care into all levels of
care and look to its chaplains and clergy
to participate in leadership?
Does the institution or faith community
welcome and encourage non-professional
(volunteers or lay members)
participation in end-of-life care under
the guidance of a chaplain/clergy?
Do these institutions value and
support the use of ritual with patients,
congregants, and staff?
Does the institution or faith community
value spiritual care sufficiently to
provide for adequate professional
staffing?
In the congregational setting, clergy
leaders need to reflect on their role in
end-of-life care. Congregants facing serious
illness look to their senior clergy for
care. Given all that these figures have to
do, stewardship or a sound use of
resources may suggest the use of lay
members or volunteer care teams to support
the sick until the acute phase of
dying when the clergy can intervene. But
the seriously ill may want more than
that: How can the clergy leadership work
with the system to better meet their
needs? What kind of leadership in end-of-
life care can the clergy provide? Religious
traditions have so much to say
about pain, suffering, and comfort, and
the clergy is central to that message.
When does spiritual preparation for
dying begin? The thanatological literature
conceptualizes death systems as the way
in which people "live their dying," a multifactorial
and longitudinal process over
the life course. If this is true, it seems that
spiritual care at the end of life is "too little,
too late" and that the intervention(s)
should come much earlier.42 Congregational
clergy should initiate earlier, recurring
talks with congregants about the role
of the clergy and congregation, and the
support they have to offer. Such conversations
might make it easier in times of
crisis for people to raise their concerns.
Clergy should work to overcome the
taboo of death. For example, an occasional sermon can offer the community
the chance to reflect on death, what the
tradition offers as support, and the clergy's
thoughts on the subject. Brainstorming
with the congregation, through focus
groups, will elicit their questions and concerns
about spiritual issues and end-of-life
care. Education about advance
directives, in the context of the religious
community, gives people the
opportunity to raise spiritual issues.
Spiritual care needs to begin earlier,
before the onset of illness. Clergy
must help people frame their lives in the
larger context, so that death is understood
in a larger perspective. Congregational
clergy seem to have a distinct
advantage over hospital and hospice
chaplains, in that the former know
patients in the larger context of their
lives. Although a chaplain might know a
patient from a previous hospitalization, in
our study most of the visits by hospital
chaplains were "cold." Patients typically
leave the hospital before a relationship
can be well established. A hospice chaplain
may come to know patients, some-times
intimately, in the course of their
dying, but clearly this relationship comes
into existence because of the particular
context for the person's care.
Ideally, congregational clergy give
care from cradle to grave. The recent
phenomenon of mega-churches or of
"church shopping" might make this
familiarity harder to achieve. One factor
that may overcome the disadvantage
here is shared religious or ethnic identity
between chaplain and patient or family.
In some cases people may not know
each other personally, but they share a
common identity that mitigates the
"stranger" label.
There were examples of good
working relationships between hospital
or hospice chaplains and a patient's
congregational clergy person. Hospice
chaplains mentioned the contributions
that congregational clergy can make
to spiritual care for hospice patients.
However, these occasions seemed the
exception, rather than the rule; the
chaplains also made note of their perception
that congregational clergy
"seemed so busy" that they became
involved towards the end of the parishioner's
life, as the person was actively
dying.
One concern of congregational
clergy was straightforward: Several noted
that they felt like "outsiders" when then
entered the strange environment of the
hospital. One church pastor had encouraged
lay people to undertake visitation to
hospitalized patients. As a result, he did
not visit hospitals much anymore, unless
a death was imminent. One felt that he
was viewed with suspicion by hospital
staff, as if his presence was unwarranted.
Clergy from all settings acknowledged
the need for better communication and
peer support.
It's OK to be unprofessional—
Be a person
Chaplain H. makes me feel good. He's
a happy sort of guy . . . Tell the clergy
they shouldn't get too deep into religious
stuff. They should say prayers,
but not focus only on religion all the
time. Tell them to keep it light.
—a patient
Spiritual care at the end of life is
not rocket science. Time after time,
patients noted the importance of humor.
They want clergy not always to be
solemn, but to "meet me where I am."
Humor transforms the moment, often
opening the way to conversation about
deeper concerns.
The heading on this final section is
not "It's OK to be funny." Many professionals
who are concerned with improv-ing
end-of-life care focus on the
importance of bolstering the patient's
authority to make decisions that physicians
will respect at various points along
the way to a good death. Stressing decisions to be made and problems to be
solved, however, makes care external to
the patient. Spiritual care recognizes
that the end of life involves the patient's
internal and external lives—one directed
to the relationship between the self and
the transcendent, the other to relation-ships
with other people. For patients
fortunate enough to have committed,
sensitive support and guidance, the two
dimensions can deepen and resonate
with each other. Although decisions
need to be made, dying is not primarily
a problem to be solved or a process to
control, but a mystery that must be lived
with and confronted. We must formulate
a provisional stance toward this mystery,
without assuming that it is something
that we can understand and
manage.
Given their symbolic authority at
the end of life, clergy have an opportunity
to support patients in taking such an
approach. But how? Patients in our study
suggest that if, as clergy, you are in doubt
about your response to the person facing
life-threatening illness, it is all right
sometimes to forget your training, to forget
everything that your colleagues or
your profession seems to require of you.
Be flexible; listen and respond with an
attentive ear. Ask: What does human
decency and thoughtfulness call for?
How does one human respond to another
in this situation? How do you love
your neighbor as yourself?
Lonnie Kliever writes, "Both the
Jewish and Christian emphasis on death
is, in reality, the obverse of an even
greater emphasis on life. At best death
serves as a motive for a creative and
responsible life. At worst, death looms as
a menace to a courageous and generous
life. Either way, death lends urgency to
life that would be utterly lacking without
it. Death enhances rather than cheapens
the value of life."43 To hide within a professional
role or agenda, to focus too
strongly on managing a good death, is to
miss the theological truth that the
emphasis of the spirit is on life, on the
mystery of living unto death. The spirit
animates until it leaves the body.
Respecting the patient's cues, feel free to
laugh, tell stories, be serious and offer
your perspective when it's appropriate, be
a friend—that is the key to spiritual care
at the end of life.
CONCLUSION
Clergy can play an important role in providing
spiritual care to people facing life-threatening
illness and the mystery of
death. Local clergy may offer care from
their specific tradition by providing supportive
counsel and appropriate rites.
Professional chaplains generally do not
displace local religious leaders, but their
more specialized training for the
requirements of the hospital and hospice
environment enables them to complement
a patient's local clergy person.
Many religiously active people,
however, do not notify their local clergy
of their hospitalization or enrollment in
hospice. Additionally, many patients do
not have an active involvement in a religious
community to which they can look
during healthcare crises. Therefore, the
professional chaplains offer important
support to dying people.
HOSPITAL CHAPLAINS
Hospital-based chaplains generally
had a positive view of opportunities for
spiritual care at the end of life. They saw
themselves as "transitional" figures,
working between the formal, organizational
structures, to "assuage anxiety,"
"witness," and otherwise serve a symbolic
role in providing spiritual care to patients,
families, and staff. As such, the chaplains felt that the staff accepts them as
part of the healthcare team, albeit in a
particular, even specialized, role. Most of
these clergy reflected their Clinical Pastoral
Education training, speaking of
being an "authentic presence," of the
importance of listening and responding to
the individual's needs. By being open to
the patient's and family's experience, the
chaplains felt they could build a connection
that allowed them to help make
sense of the person's life and death.
Therefore, they didn't assume a common
understanding of spirituality, perhaps
because they interact with a
diversity of people; rather, they were willing
for the dying person to choose the
pace, content, and rules of engagement.
The barriers the chaplains felt were
not so much relational, as systemic or
personal. They spoke of inadequate space
and time set aside within their institutions
for dying patients and families; the system's
needs for "control" (for data, for
policy, for adherence to Joint Commission
on Accreditation of Healthcare
Organizations standards); and their own
personal struggles with feelings of inadequacy,
dishonesty, and the sometime
ambiguities involved in being priestly
and prophetic.
Their description of dying well spiritually
included peacefulness, tying up
loose ends, personal meaningfulness, and
the presence of family and friends. If a
person and family have prepared well
for death by addressing their emotional,
physical, economic, and spiritual concerns,
and if the system and institution
makes "room" for the fulfillment of personal
wishes surrounding death, then
good spiritual care at the end of life can
take place.
HOSPICE CHAPLAINS
Because hospice calls for palliative
care at the end of life, hospice chaplains
find themselves in intimate relation with
their patients or clients. Perhaps because
patients are freed as much as possible
from physical pain, while recognizing
they are dying, they are able to consider
spiritual issues. They have the opportu-nity
to address life issues, and to try to
narrate and make sense of their life story.
Encouraging individuals at the end of life
to tell a life story is a central feature of the
work that the hospice chaplains
described as "spiritual care."
Although hospice chaplains try to
meet the spiritual needs of all patients,
spiritual care in their context is not primarily
about denomination, creed, or
belief. Hospice chaplains are sometimes
called in to provide spiritual care and
support for atheists, agnostics, and those
estranged from a particular denomination;
such care is also offered in the hospital
setting. Hospice chaplains are
focused on meeting patients' needs—for
connection, comfort, support, and companionship.
In many of the visits we
observed and others that we heard about,
chaplains were called in, not to fulfill an
expressly "religious" role or duty, but to
provide what on the surface might seem
like mundane support. Hospice chaplains
reveal that they are able to meet
patients' needs because they are the only
members of the hospice team who are
not called in to perform some other duty.
They are available to listen. By listening,
they can identify patients' interests and
meet their needs for attention, support,
compassion, and so forth.
CONGREGATION-BASED CLERGY
The congregational clergy certainly
recognize the need for spiritual
resources at the end of life; in providing
ongoing care for their congregations or
communities, these clergy are constrained
by their community members'
general reluctance to discuss death and
by inadequate educational resources.
While making assertive statements about
their approaches to end-of-life care, these
clergy also expressed more doubts about
their abilities to provide quality spiritual
care at the end of life, possibly because in
their congregational settings they are
less frequently called upon to provide
specific end-of-life care. Generally, they
are so busy with a variety of tasks that
concentrating on end-of-life care is difficult:
they react to their parishioners'
needs, drawing upon traditional words
and practices. They acknowledge their
important role at such times. Clearly the
congregation-based clergy felt that they
often could be a resource, as one who
knew the patient and family, who had
knowledge of things that need to be done
and can be of comfort.
But to some extent these clergy
feel a lack of education about end-of-life
issues, a lack of back-up support, and
occasionally a sense of isolation in their
own religious communities when it
comes to the realities of providing end-of-life
care to patients and families. They
spoke of a general reluctance of people to
discuss death, and the general public
perception that the clergy is seen as antiquated,
irrelevant, and too identified with
organized religion to be helpful in spiritual
care.
Significantly, some congregation-based
clergy felt rather uneasy in the
medical environment that is charged with
providing end-of-life care. The principal
barrier they described was a suspicion on
the part of healthcare providers about
their presence in the hospital. Some felt
excluded from participating in a mutual
fashion with the healthcare team, including
hospital and hospice chaplains, in
caring for parishioners at the end of life.
The hospice chaplains, one of whom was
also on staff at an area hospital, did not
share this view.
Hospital and hospice policies on
confidentiality and privacy do not allow
a healthcare institution routinely to
inform local clergy that a congregant is
under care. Hospice chaplains routinely
asked patients about any existing clergy
contacts in the community and offered—
with the patient's permission—to contact
the congregational clergy. In this way
they were at times able to connect or
reconnect not only the patient but also
the family to a community resource that
could help with ongoing spiritual growth
and support even in bereavement. The
two hospice chaplains who had been on
staff for many years were extremely well
connected to community clergy of all
faiths. One participates actively in several
neighborhood-based, multi-faith clergy
groups. The hospice also had played a
role in organizing a network of care, linking
congregational clergy with hospice
and hospital services for people at the
end of their lives. Some of the area clergy
were more actively involved than others,
but this resource helped some
congregations provide social and spiritual
support at the end of life.
All clergy must recognize that
because patients struggle to make sense
of what is happening to them, spiritual
care at the end of life does not fit into a
cookie-cutter or assembly line mode.
Individuals facing the end of life have a
wide range of spiritual needs. In order to
understand a patient's spiritual life history,
therefore, a spiritual care provider
needs the time to establish a rapport
with a patient and to identify and understand
what has satisfied—or frustrated—
her efforts to resolve spiritual questions
and concerns in the past. Some patients
might face a life-threatening illness with
longstanding anger at God. Of that group,
some might have learned to cope in a
particular way, struggling with their frustration
and anger but remaining con-nected
to the faith community. Others
might have become estranged from formal religious expression. Other patients
might never have questioned God and
might feel frightened with the feelings
their questions arouse now. To some,
spiritual expression has always meant a
rote recital of prayers or attending services,
without questioning or reflecting.
One patient noted that he never questioned
God until the moment when his
wife suffered a heart attack while caring
for him. In eighty-eight years, that is the
first time he remembered questioning
God, and he was not sure how to cope. At
some point in the interview, this patient
mentioned that the chaplain's visits were
helpful, because the chaplain listened
and allowed him to talk through things.
The chaplain's ability to support this
patient serves as one more reminder of
the clergy's power to help the dying.
I think for whatever reason, when we
have that title of clergy, we carry with
us something that other people look for
(and it's not the same as with a social
worker or nurse). If there's somebody
at my congregation as trained as I am
in pastoral care, in how to counsel and
how to comfort the [seriously ill], the
visits don't seem to carry the same
weight if they come from the lay person
as they do when they come from the
clergy person. It's as though for some
reason somehow the hands of God
have touched us, and therefore our
words carry more significance.
—congregational clergy
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Second Opinion #10
Publisher: Park Ridge Center, Chicago
Date: April, 2002.
ISSN: 0890-1570
112 pages.
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