A Special Report:
Spiritual Care At
the End of Life
| by EDWIN R. DUBOSE |
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In medicine, the story is often confused
with the medical history. One's
history is what the physician needs to
treat that patient. The story, in contrast,
is what the ill person needs to make
sense of what's happening. The story,
however, is not there to be told, but is
discovered in the act of telling. The
patient is literally making it up as he goes
along, because the story happens on
three levels—past, present, and future—all
at the same time.
The Past
The past may be there within the story in
several ways. Certainly there may be hints
of guilt or shame about something or
someone in the past. These feelings may
be specific or nonspecific and may reveal
themselves in a comment such as, "I
don't want visitors. They must not see me like this." The feelings may be caused by
the loss of control over bodily functions.
As a result, the person feels unclean and
unacceptable to self or others.
Sometimes the dying person feels
that her condition, with its pain and suffering,
is God's punishment for some reason:
"I must have done something wrong
for this illness to have happened." For
many, there may be particular words,
thoughts, or deeds for which the person
feels accountable. For others, as with Job,
the reason may be unfathomable and
lead to statements like: "This is so unfair."
Unfairness raises the issue of trust. If God
has let me down, whom can I trust? Often
the person does not want to show doubt
or anger at God—or clinical caregivers—yet
the feelings are there and may include a
loss of faith and confidence.
In this aspect of a person's story, the
spiritual caregiver recognizes the need for
acceptance and forgiveness. Those who
experience doubt and anger need reassurance
that they are still acceptable to
God. Advising a patient to "forget the
past" does not work. Helping the person
name and feel the hurt, see and understand
the incident more fully, then reach-ing
out with love and concern to the
person who has been hurt is a way to
integrate the past with the present. For all
people, religious or not, it is important to
bolster trust by giving clear and accurate
information, along with appropriate reassurance
of the help or treatment available,
and importantly, to convey that
there will be consistent, genuine companionship
from family members, physicians,
and clergy.
There are two more ways in which
the past may figure into patients' efforts
to integrate their present experience into
their ongoing lives. Some may be able to
reconnect with old patterns and customs.
Others construct their own meaningful
rituals.
We saw reconnection expressed as a
return to the prayer, values, and recollections
of childhood experiences, where
for most of the patients religion was
deeply rooted. The patients seemed drawn
to expressions of religious activity that
were associated with a time when they
experienced the security and comfort of
their parents' love. One patient, Margaret,
who had joined the Lutheran church,
still recited, in Polish, the Catholic bedtime prayers she'd learned as a toddler.
Margaret was one of several patients
who showed signs of syncretism. She and
several others found comfort by borrowing
from other traditions, either because
curiosity fueled personal exploration or
because of contact with family or friends
of other faith traditions. Margaret had
always felt a special bond with the Holy
Mother. When she married a Lutheran
man, she interviewed his pastor, to see if
he would allow her to continue her devotional
practices, which included contemplative
prayer surrounded by her home
shrine with statues and candles to the
Holy Mother. Decades later, she found
comfort in the ability to maintain cherished
parts of her childhood tradition.
On the other hand, for some
patients there was less comfort in the
traditional religious patterns, beliefs, or
customs of their childhood. They found
other ways to construct their own spiritually
meaningful practices. Peter is still
a member of his childhood church. He
finds comfort, however, in monthly healing
services around the region. He and
his wife designed a special bedtime ritual.
Each evening they gather the family
together. As he revealed:
We have our own prayer where we,
you know, we thank God and ask Him
for whatever we want. And then, well,
I put Holy Water . . . on both my
wounds, and ask the Virgin Mary to
please continue praying to her son on
our behalf, and then my wife applies
Holy Oil and says a prayer . . . It's just,
that it is a ritual that, you know . . . as
much as sometimes the kids can think,
oh I'm so tired and everything, and
they didn't want to stay up late, but it
enriches all of us.
To Peter, skipping the prayers is like forgetting
to take a dose of medication.
The Present
Bringing the past into the present, finding
ways to help and support the patient
as he struggles to reconcile and integrate
a confusion of experience into his ongoing
narrative, is one part of spiritual care
that clergy and other spiritual caregivers
can provide. In the present dimension,
there are other aspects of the story that
clergy need to attend.
Anger with God, the illness, or
seemingly ineffective medical personnel
is an expression of rejection—it is as if
patients are saying, "I reject you because
I feel rejected. Now you'll know something
of what I'm feeling." The patient is
suffering in the present, under the threat
of death. All that was once taken for
granted—the health of the body, relationships
with others, a future—is now called
into question. Along with this disintegration
of the self, there may a growing sense
of hopelessness. People facing the end of
life may need support to explore feelings
and test new interpretations. The clergy
caregiver needs to be nonjudgmental and
not take things personally, but recognize
that the patient may be testing: Will you
stick with me no matter what?
The Future
Respect for the person who is dying, and
the story she is telling to reconstruct a
meaningful existence, involves a commitment
to the future. Patients have a
need to express hope into the future,
whether this hope is for oneself, or for
one's family and others who will be left
behind. The hope of a physical restoration
is natural, but such expectation must be
realistic. There is often hope for reconciliation
with others in the patient's life;
there is hope that one will be cared for
and hope that meaning in death can be
found. As the clergy person becomes part
of the patient's ongoing story, she becomes
part of the patient's hopes for the future.
Because their stories include a
sense of the future, the stories become a
source of vision. In this sense, people
make up their stories as they go along;
stories are continually revised. Telling
and retelling conceals as much as it
reveals. Therefore, what the story means
to someone, as well as what the listener
hears, is always open to interpretation
and revision. Listening carefully to what
patients say, seeking clarification, and
helping the storyteller make sense of his
or her narrative, is a vital part of spiritual
support.
LISTEN AND RESPOND
As a component of spiritual care,
respect for patients as they try to tell stories
that integrate past, present, and
future issues, requires the skill of listening.
From our patient interviews, we identified
two things that caregivers can do to
provide spiritual support and care: listen
carefully and sensitively to the dying person,
and respond appropriately and genuinely,
person to person.
Listening
Patients said time after time, "Please, listen
to me." Everyone does not experience
the dying process in the same way.
This point undercuts any characterization
of "the good death" as one size fits
all. Therefore, one must listen carefully
to hear what's going on behind the
patient's verbal or nonverbal communication.
When a patient facing the end of
life talks, the clergy and other caregivers
need to listen.
There are barriers to careful listening.
Often healthcare practitioners' own
anxieties or fears about dying can interfere
with careful and attentive listening. It
is common for many people to "not hear"
that which makes them nervous or
uncomfortable, or to change the subject as
a way of feeling in control of the situation.
Predetermined agendas may also
create barriers to listening. Advance
directive forms, for example, don't take
care of everything. Physicians or nurses
may become so focused on securing the
signature that they neglect the conversation
with patient and family that can lead
to a better understanding of what patients
prefer in end-of-life care.
Spiritual caregivers must stay
focused, be mostly silent, be receptive,
and ask open-ended questions to elicit
feelings, memories, personal experiences.
Ask: How does that make you feel? What
is that like for you? What do you think
that means? Can you explain that to me?
How were things before? Don't lead;
don't judge; don't interrupt; don't advise;
don't say, "I know how you feel" or
"Don't feel that way."
Attentive listening takes time. The
story cannot emerge all in one piece. A
sick call, a visit to the patient, can help
pull things together, but the story has
been running before—and will continue
after the visit.
Responding
As with any medical intervention, the
first rule of spiritual care should be: do
no harm. Given our ethical commitment
to respect persons, it is improper to
impose any personal religious or spiritual
belief on a vulnerable patient. Also,
caregivers often feel that a dying person
ought to be talking about dying or spiritual
matters, and that the person's refusal
to do so is "denial." In these situations,
the need to talk about dying may be the
practitioner's need—not the patient's—
and this usually arises from a practitioner's
feeling of helplessness. The
practitioner who respects the patient will
simply be present, allowing the patient to
decide what to discuss and how to die.
Briefly, here are some ways to
show respect for dying persons: Be honest,
genuine—don't use scripts because
patients can tell. Avoid judgment, be
willing to listen, and don't promise more
than you can deliver. Think about what
it means for a friend to visit a seriously
ill person. A friend is there not out of
duty or obligation, or because he fulfills
a specific social role. Friends visit
because they care about the person who
is now very ill—the person with a history,
with particular needs, experiences,
and idiosyncrasies. Friends are honest,
but in a way that conveys respect and
concern for the patient's well being. In
this kind of relationship, the patient is
affirmed as a unique individual. One
hospice chaplain described his visits to
a patient who liked to sit with him,
watching baseball on television and
drinking beer, in companionable
silence. The man was surrounded by
women caregivers and wanted male
companionship. Over time, as the level
of trust became established, conversations
deepened, and the man's story
unfolded.
COMMUNICATION AND EDUCATION
Clergy act as agents of communication
among patients, families, and other
caregivers. They can foster mutual understanding
among all parties of the patient's
preferences in end-of-life care. Other
caregivers—nurses, social workers—can
do something like this, but clergy are
particularly well situated for this purpose.
While a patient may experience the
healthcare institution as an alien place,
clergy can offer a relationship of trust in
which the patient can admit questions
and concerns. This aspect of care assumes
the ability to listen attentively and respond
genuinely and appropriately.
Clergy can also enhance communication
among parties, whether from
patient to clinicians to family, or between
patient and family, about the various
aspects of care. Such a role calls for
familiarity with the clinical and moral
language used in health care. There are
many resources available to clergy to
familiarize them with the clinical world.29
Many clergy are taught "that theology
is conversation, a conversation
between past and present, text and event,
between the reading of the Bible and
the daily newspapers."30 In the contribution
of pastoral care to spiritual care at
the end of life, this conversation includes
an expanded set of participants with a
particular set of questions. The clergy
person becomes a theological interpreter
and educator, helping patients understand
their religious tradition and find
theological meaning in their experience.
Am I being punished? Do I somehow
deserve this suffering? Where is God in
this? Clergy can be conversational partners
and, when appropriate, guides in
this search for meaning. At times, they
may have to challenge a patient's or family's
theological assumptions.
Differences in race, ethnicity, gender,
and cultural background of clergy
and their patients were one of the most
challenging aspects of end-of-life care
in our study. When the chaplain and the
patient and family shared the same or
similar backgrounds, the quality of the
rapport and communication process—
openness, empathy, and trust—seemed
better. Cultural congruence between
patient and chaplain should minimize
misunderstandings about attitudes,
beliefs, and values regarding end-of-life
issues, including individual versus collective
decision making, distinctive cultural
meanings of death, and the
importance of collective psychosocial
support in some cultures.
Several chaplains noted that matters
of gender, ethnicity, cultural background,
and religious or spiritual beliefs were less
important than more individual, interpersonal
caregiver traits, such as genuineness,
acceptance, and empathy. Most
important, in this view, is the clergy's
willingness to become acquainted with the
patient's culture, social class, and spirituality.
By being open to what the patient
believes, chaplains build confidence, credibility,
and trust. The more the clergy
know about the patient and family, the
better they can communicate with and
educate staff about patient preferences.
EMOTIONAL SUPPORT
On the day Keith received the news
that the end was near, [the chaplain]
asked whether he would like [them] to
pray together. He said yes, and he and
his wife both cried, for the first time.
—hospital observation
How do we help those who are dying?
What is the experience of the dying
person?
—congregational clergy
What is blocking death from happen-ing
peacefully?
—a chaplain
Death means both the biological
end of the organism and, certainly for
human beings, the end of one's personality.
For us, then, no matter our beliefs
about what may lie beyond, the finality of
death is dreadful.31 Emotional support
and the amelioration of fear or anxiety
are key features of spiritual care for dying
people. Such support can be given in
different ways. For example, Dave—who
juggled half-time hospice chaplaincy with
CPE training—happened to have musical
talent and interest. He found himself
bringing a guitar to some of his hospice
visits. Dave explained that he was not
trained in music therapy, a discipline
that he recognized and was not trying to
usurp. However, music helped him; it
provided comfort, and it enabled him to
express himself more effectively. When
he brought his guitar along, he was able
to reach patients in another way.
One patient we visited was an
eighty-year-old man with terminal
Parkinson's disease. His illness blocked
his ability to use language, but he and his
wife bickered constantly nevertheless.
Frustrated at being unable to communicate
clearly and undergoing turmoil in
his marriage, the patient was clearly
upset and fearful as death loomed larger
during his life's last weeks. When
Dave brought out the guitar and played
some favorite tunes from the decade
when the couple had courted, something
special occurred. The years seem to
melt away, and they enjoyed some reminiscences of a time when they were
happy, healthy, and looking forward to
many years together. This man was able
to talk haltingly about the accomplishments
that gave him pride—his work,
his children's accomplishments. Little by
little, he told us his life story. In doing so,
he seemed heartened. He was gaining a
sense of closure, as he prepared to take
the next step in his journey. His wife was
able to move her attention away from his
disabilities. They shared some tender
moments as they sang together. Although
Dave brought along one song from his
Sunday school youth group days, most of
the tunes had no religious content. Even
though there was no explicit discussion
of religious or spiritual issues in the
songs, they managed to accomplish a
spiritual task. The songs helped this
couple to recapture long-neglected feelings
and long-forgotten memories, giving
them a remission from the attention to
bedpans and medication regimens. The
songs helped him to recount his life
story, and in doing so, they facilitated a
spiritual activity.
COORDINATION AND INTEGRATION
When faced with critical illness or
a terminal prognosis, and especially when
they find themselves in the strange and
demanding hospital environment,
patients and families worry about death
and hope for recovery. They do not often
feel in control of very much in the hospital
setting, and they rarely ponder a
style or type of death. Desperate to know
what is wrong, anxious, exhausted, confused,
hopeful, and prodded by the medical
staff, however gently, to focus on the
next decision, they seldom consider what
"a good death" would entail or how to
facilitate it.32
Chaplains and congregational clergy
can act as prophetic voices, challenging
patients to live and die in a way
consistent with what is important in their
lives. A good death is one that occurs on
their own terms, one that is meaningful to
them. In supporting an appropriate death,
clergy may have to support the patient's
preferences even when the family or clinicians
disagree. Clergy can also explicitly
advocate with the staff for patients whose
voices are ignored, such as an elderly
patient who is afraid to complain of inadequate
pain management, or a scared,
confused woman who is unable to walk
but will be discharged to an unsupervised
apartment. Clergy can remind staff
that respect for persons is violated not
only when physicians ignore advance
directives, but also by smaller gestures,
like the failure to close the door, pull the
curtain, or use a sheet to cover a patient.
Dying appropriately also takes into
account the patient's web of relationships
with family, friends, and clinical caregivers.
Committed to supporting and representing
the patient, the clergy may
enhance communication among these
parties to maintain, even strengthen, these
relationships.
Given the importance of relationships
as a component of spirituality, it is
important to note that spiritual care is not
just the province of pastoral care
providers. Chaplains and pastoral counselors
are professionally trained spiritual
caregivers, typically representing
organized religious traditions. Other
healthcare practitioners or congregational
volunteers, however, can provide
spiritual care and support for people facing
life-threatening illness. Indeed, many
patients are open to and might prefer
support from non-clergy caregivers.
On a multi-disciplinary medical
team in the hospital, for example, the
chaplain is not the only one giving spiritual
care. One patient, when interviewed,
named her mother as the person to whom
she turned for spiritual support, because
of a close relationship based on a lifetime
of shared experiences. When asked if she
felt that clergy could provide the spiritual
support she needed, she said, no, that
the clergy she had known were too narrow
in their thinking. Often a spouse appeared
to play a vital role in supporting the sick
partner's spiritual concerns.
Staff also offered spiritual support
to patients and families. Several chaplains
noted that nurses sit and hold a
patient's hand when they are upset, as a
form of caring. One mentioned that the
doctors who take a patient's talk of religion
seriously and refer to the chaplain
are helping with spiritual care. On one
occasion, upon a patient's death, his
nurse joined the chaplain and the family
in a prayer, an act that clearly meant
a good deal to the family. On another
occasion, following the death of a
patient, the neurologist on the case told
the family that he had recently experienced
a similar situation with his mother
and noted that he had been praying
for the patient. The chaplain relaying
this anecdote then stated that he had
been trying to understand the physician's
action, and now believed that he
had been offering spiritual care. The
avowed faith-based nature of this particular
hospital may foster an atmo
sphere in which healthcare personnel
take spirituality and spiritual care more
seriously than caregivers in a secular
institution.
One patient seemed to have a spiritual
orientation, but for whatever reason
he rejected a referral to a hospital chaplain.
Possibly all that the patient wanted
from his nurse was for her to say, "I'm
sorry; this must be hard for you. You
must be scared. How are you dealing
with all of this?" Genuine human concern
and a few minutes of time can
become the basis for further conversations
as patients struggle to make sense of
what's happening to them. This is not to
suggest that expertise and accountability
in spiritual care are unnecessary: not
every expression of spirituality is positive,
and not every self-appointed caregiver is
adequate for the responsibility. Professional
ethics and the value of partnership
demand that staff know the limitations of
their expertise and refer patients to others
more competent in a particular area
of care. In some end-of-life care situations,
some pairings of patients with caregivers
work better than others. On a
well-functioning healthcare team, for
example, chaplains often both provide
and coordinate spiritual care.
Hospice philosophy stresses the
need of the whole agency, the entire staff,
to seek to understand and support the
spiritual systems within which the patient
and family work, because those are the
resources that have helped them through
crisis in the past, and it is those systems
that will get them through this time,
beyond the staff's intervention. Hospice
staff work with the patient's (and family's)
spiritual beliefs and practices to augment
these resources. In this way, the
Gallup finding that 81 percent of patients
look to family for spiritual support, and
61 percent to close friends, makes clearer
sense. These are the people who know
the dying person the best; the hospice
staff, for example, the chaplain, support
these people in caring for the patient.
SUPPORTING TRANSITIONS
Within a healthcare facility clergy
are important figures in supporting the
transition from aggressive treatment to
comfort or palliative care, and certainly in
the transition of existence that death
represents.
The relationship of a dying person
with a member of the clergy is different
from one with a social worker or nurse.
Ordination confers a special authority. It
serves as a counterpoint to medical
authority. In our day, medicine and psychology
provide the major metaphors
for healing, and laity heed medical advice
with the sort of deference given religious
advice in earlier times. By symbolically
representing God's presence, however,
the clergy can help patients take
medicine less seriously by reminding
them that there is mystery beyond technical
trappings.
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Second Opinion #10
Publisher: Park Ridge Center, Chicago
Date: April, 2002.
ISSN: 0890-1570
112 pages.
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