A Special Report:
Spiritual Care At
the End of Life
| by EDWIN R. DUBOSE |
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SPIRITUALITY
I'm not overly religious, but I do
believe in God.
Spirituality—I think that means your
overall view of life; you know, is the
glass half full or half empty. You're not
just thinking about water; you can
apply that scenario to everything in
your life. If you stub your toe, you can
say it hurts like crazy or you can think
I'm lucky I've got a foot. That's your
philosophy. Spirituality means a positive
overall view of life and knowing
that God doesn't give you more than
you can handle, ever.
Well, I'm not a churchgoer now, you
know, but I was raised Catholic. That
has no meaning for me any more, but
I pray and I try to get out into nature as
often as I can.
—three patients
St. Gregory of Nyssa, in the fourth
century, wrote, "Spirituality is liberation
from necessity." Our lives are made up of
habitual actions and things to which we
have become accustomed. Routine helps
us get through the day; we are creatures
of habit. Factoring in spirituality changes
the equation a bit. As humans, we do not
necessarily move from stimulus to
response—our spiritual nature liberates
us. Still, just what is spirituality? What is
it that liberates us?18
Healthcare chaplain George Fitchett
defines spirituality as "the dimension
in life that reflects the need to find meaning
in existence and in which we respond
to the sacred."19 Gordon Wakefield, in
The Westminster Dictionary of Christian
Spirituality, writes that spirituality is
"those attitudes, beliefs, practices which
animate people's lives and help them to
reach out towards super-sensible reali-ties."
20 Both definitions describe a spiritual
essence to the person that does not
necessarily include God-talk or religion.
Based on our interviews with clergy
and people facing life-threatening illness,
we can describe spirituality in another
way: Spirituality is the way in which a person
understands and lives life in view of
his or her ultimate meaning, beliefs, and
values. It is the unifying and integrative
aspect of the person's life. When lived
intentionally, it is experienced as increasingly
unifying and integrative, as a process
of growth and maturity. "It integrates,
unifies, and vivifies the whole of a per-son's
life story, thereby interacting with
the physical, psychological, and social."21
Spirituality includes a sense of the transcendent
and is the interpretive lens
through which the person sees the world.
It is the basis for community, for it is in
spirituality that we experience our co-participation
and the shared feeling or
condition that is both our vulnerability
and our liberation from necessity. Spirituality
may or may not be expressed or
experienced in religious categories.
SPIRITUAL CARE
Spiritual care is that support provided
by individuals or communities
that acknowledges the spiritual nature
of people's lives and sustains them as
they struggle to deepen their understanding
of their relationships with the
transcendent and with other people.
SPIRITUAL NEEDS AT
THE END OF LIFE
What do you worry about as you face
your illness? Do you have any spiritual
concerns at this time?
—question from patient interview
I want my family taken care of.
I wonder what dying will be like. Will
it hurt? Will I know what's happening?
I want someone to care what's happening
to me.
I believe I'll go to heaven. Sometimes I
worry about that. I want to go on living;
I'm not dead yet.
I feel guilty about things I've done.
I'm angry about some things that were
done to me.
I don't want to suffer. I'm tired of feeling
scared.
—patient responses to the questions
Patients in our study expressed several
common spiritual needs. Among
these were the needs to love and be loved
for who they are; to experience forgiveness
and extend it to others; and to find
meaning and purpose in life and hope for
the future. Consolidating these concerns,
we identified five themes as spiritual
needs. These five themes clearly overlap;
we present them discretely for purposes
of discussion.
RECOGNITION
The last couple of weeks, I did go out
a couple of times to see what my
friends are doing. I enjoyed being out
but sometimes it's very difficult to see
them so well. That old jealousy thing,
you know. I'm happy they're well, but
it doesn't seem fair. What about me?
—a patient
[I] said, "If you're sick, you've got a
handicap. You don't have that kind of
faith if you're sick." Then I said [again],
"Sickness is a handicap." The minister
got up and said, "Whose fault is that?"
My questions stopped. Whose fault? I
didn't say whose fault it was, I just said
it's a handicap. I don't mean a physical
handicap. I says, "Your faith, you lose
your faith." I was losing faith.
—a congregant
The need for recognition begins
with the diagnosis of illness. Recognizing
that the person has a life-threatening
illness represents the beginning of support.
This is why diagnosis is so important
to the sick. As an undefined force,
the illness is a potential threat to one's
existence: something is wrong, but the
person is not sure what to make of it.
This is why patients are relieved when
doctors give their complaint a name. To
have their condition recognized—that is,
defined—depersonalizes it. Their condition
moves from a mystery to a problem
with which to struggle; their illness
becomes something to treat, perhaps to
control or cure. This is the somewhat
distanced, impersonal level of most clinician-
patient relationships in health care.
Patients, however, yearn for another
kind of recognition.
People facing a life-threatening illness
want to be respected as unique individuals
undergoing a trying experience.
Because they are marked by a diagnosis
that sets them apart from healthy people,
these patients find themselves in new
relationships with physicians and other
health caregivers. Preexisting relationships
with others in their lives must now
include a new awareness of mortality.
Given the nature of health care in the
hospital environment, some patients look
to the chaplain to "give me the dignity
that I don't get from the medical staff."
Patients clearly do not want to be lost in
the shuffle.
A person facing life-threatening illness
needs others to recognize that he or
she is not just one more patient receiving
treatment. Arthur Frank makes this point
in The Wounded Storyteller.22 He tells
the story of a woman describing her first
surgical experience in what was a long
cancer treatment: "At pre-admission,
what I wanted was for someone to say this
must be awful for you, you must be
scared. I'm sorry. Anything." Instead her
history was brusquely taken, instructions
were given about fasting, about consent
forms, admission, the bone scan, and
follow-up. "Trapped inside me was a
giant scream. I felt as though I'd been
dropped from a great height and cracked
open and nobody had noticed."
One reason Frank likes this story is
that nothing wrong is done. People act
professionally; the system is working the
way it is supposed to. The people who
treat and assist her will go home that
night and think that they had an unremarkable
day. The problem is precisely
that everything proceeded in a thoroughly
routine, professional way. Here is
a central paradox of the hospital as a
caring organization—as it can be in a
hospice or a congregation. Surrounded
by people who are caring for her, she
paradoxically feels utterly alone. They
are filling out forms; they are telling her
how this and that are going to work, but
while they treat her well, they do not
attend to her. The woman with cancer is
asking for recognition, from one human
being to another, that this is happening
to her and that it's thrown her life upside
down.
William F. May, in The Patient's
Ordeal,23 writes of a friend whose husband
died. She told May, "There wasn't
much I could do about it. The only question
was whether I could rise to the
occasion." May argues that there are certain
problems about which we ask,
"What are we going to do?" But there are
deeper problems in life for which the
question is, "How does one rise to the
occasion?" Serious illness and death
raise that question. Each patient wants
others to recognize that he is the one facing
that mystery and trying to find the
ways to rise to the occasion—with little
preparation or practice.
A number of the people we interviewed
also wanted caregivers to recognize
that they were part of a family.
Although there are patients with no family,
or who are estranged from family, all
of the ones interviewed in this study
wanted family members included in discussions
about treatment. They clearly
put high value on the various kinds of
support family members give and worried
about the effect of their illness on family
relationships. Several mentioned their
appreciation for the support they
received from neighbors and community
members, especially when freely given.
Finally, recognition of the sick as
individuals acknowledges their worth as
human beings and is a necessary condition
for them to experience the love of
others. Also, as people who are appreciated
and valued, they may be freed to
experience the love of self and find self-forgiveness.
Surrounded by people
who are caring for her,
the woman with cancer
feels utterly alone.
COMPANIONSHIP
I occasionally visit with folks who are
facing the end of life, or their family and
friends. Obviously, there are unique
challenges to ministering in this kind of
situation. I would like to be as helpful
as I can be, but I am reminded that
often there isn't much one can do other
than be there.
—congregational clergy
I find spiritual support and comfort
from my family. My husband and I
are very close, and we didn't even
think we needed anyone except ourselves.
Now, though, as we started to
plan for what would happen when I
die, we realized that we wanted someone
to say prayers over my grave, and
we wanted to meet and get to know
that person, so it would not be a
stranger.
—a patient
The person facing a life-threatening
illness wants to be in relationship
with other people. Sometimes this desire
is literally to enjoy the company of others;
others act on their desire by helping
people as expressions of their religious
faith or spirituality. When asked how
they express their spirituality at this
time in their illness, or to whom they
would turn for spiritual support, study
participants' answers included reference
to work on a prayer line, an
Alzheimer's support group, a sculpture
class, or simply the desire for someone
to be with them.
With the diagnosis of a life-threatening
illness, patients struggle to understand
that their lives are irrevocably
changed. Most start out hoping that
things will soon be back to normal, or
saying things like: "I want my old self
back." The old self is gone, however, and
patients must struggle to recognize and
reconcile themselves to the new self who
is facing the end of life.
For many people, the clergy person
is a familiar of death. On several
occasions when the hospital chaplain
and research observer (who procedurally
was introduced as someone con-ducting
a project on the chaplaincy
program, but was often assumed by
patients or family to be a clergy person
himself) visited a patient, a common
response was, "Uh oh. Am I doing
worse than I thought?" or "I must really
be sick." Because of this link, people
facing life-threatening illness, especially
those who know they are dying,
look to the clergy to witness their dying.
The hard but real comfort that the clergy
offer is fraternity with those who
have experienced death; the clergy is
one who has traveled this road before.
Recognition calls for companionship,
someone to walk with the dying
person as he or she grapples with the
changes, with "the new me." Even
through the bad times—perhaps most
importantly through the bad times—it is
reassuring for the ill to know that someone
will stick by them, will deal with the
physical manifestations of their illness
and treatment, will allow them their
emotions. Patients need someone who
will commit to the relationship and be
faithful—someone they can trust.
HOPE
A fundamental question for me, and
there may possibly be numerous questions
related to this, has to do with
how to be present with people who
are not apparently grounded in a sense
of hope beyond death. It is much easier
to be present with people of deep
faith who affirm my presence and
prayers. With this kind of feedback,
one has a sense of pastoral direction. I
have at times, however, been in situations
when feedback was practically
nil. I have dealt with these patients
somehow, and silently affirmed God's
presence. But under such circumstances
there's usually a question—at
least, subconsciously: What can I say or
do to offer a sense of hope?
—congregational clergy
Most of the interviewed patients in
the congregational and hospital settings
hold out some hope that medical treatment
would prove beneficial for them.
Even when the interviewer knew from
the physician or other members of the
care team that an individual was not
likely to benefit from therapy, or live
much longer, the patient spoke optimistically
about the future. It may be
that many patients do not give up hope of
recovery until the very end, if at all, or do
not "hear" what their caregivers are saying
about their situation. Hope for these
people may carry a note of bargaining or
wish fulfillment: If I remain hopeful, all
will be well. Hope becomes an attempt to
control what is happening. In essence,
the person may be saying: "Don't give up
on me, I'm not dead yet."
When asked about a time when
their religion or spirituality was important
to them during their illness, or to
imagine a time when this might be so,
many recounted moments of pain or
doubt when their spiritual faith or religious
beliefs supported the hope that
their lives had value or that there was
meaning in their experience. Several
people spoke of what their religious
tradition had to say about hope. For
some, that hope was expressed in an
understanding of life after death—an
eternal life transcending finite life.
Some spoke with a certain wistfulness,
hoping perhaps that existence continues
after death; others spoke with a
sure acceptance of seeing loved ones
again in heaven. Quite a few hoped
that they would be remembered after
their deaths for having lived a good life
and having had a positive effect on others
or the world.
Finally, several patients, when they
spoke about their illness or about dying,
said that they feared losing their capacity
to care for themselves and hoped
that they would not become dependent
on family members or others. Along
with recognition, people facing the end
of life need reassurance that they will
not be abandoned. They hope that
someone will accompany them through
to their death.
DYING APPROPRIATELY
I hear things like: "It's okay not to hit
me with an I.V. I have done what I've
needed to do in my life. I am at peace
now, I've never felt as much at peace as
what I am now." I hear families say,
"He's more peaceful," or "She's more
peaceful in the last couple of days." I
have folks say to me, "I know where I'm
going." Or . . . "I'm going to be with my
God." And they express that in those
kind of spiritual terms, "It's okay. You
don't have to worry about me. My life is
complete now. I'm ready." Often they
smile. So when I hear, "I'm ready," I
can only smile back and keep my
mouth shut.
I'll never forget one lady. She was very
close to death, maybe the day before
she died. She said [to her niece], "You
know, I owe you thirty-nine dollars for
that dress you bought me two weeks
ago, so I want you to go home today
and make a check from my checkbook
for thirty-nine dollars, because I don't
want to leave this world if I have any
debts." Then she laughed. But she really
wanted her to do it! The next day she
went to sleep and died. But she wanted
that, you know, like pulling together
her little business.
—two chaplains
A common phrase in end-of-life
care literature is "death with dignity."
Proponents of greater choice and control
advance this term, assuming that all
agree on its content. While the values of
a death with dignity—pain-free death at
home, untethered from the apparatus of
high-tech, aggressive medicine—are
appealing, in some ways it has become
a rhetorical device in the debates about
the right to die a death of one's own
choice.
From our interviews, people wanted
to die pain free, with unfinished
business or loose ends tied up, and not
alone. In a more nuanced expression,
patients expressed a desire to die
"appropriately."24 In other words, people
want to die in ways consistent with their
own self-identity, after a period in which
they could achieve a unity and integrity
to their lives. Their death should in
some way be theirs, uniquely—in some
sense the natural culmination of their
life's course. Here, again, they want
their deaths to be meaningful, meaningful
both to themselves and as final
expressions of their life's values. A real
concern for people in this study is that
they might die in a way incommensurate
with this wish. Physical pain is a fear,
but so is a death in which they suffer
inappropriately or, following Eric Cassell
in The Nature of Suffering, suffer in
ways that would negate their sense of
"self."25
Dying appropriately seemed especially
pertinent to the hospice patients in
this study. Unlike the congregants and
hospital patients who still had expectations
of therapeutic treatment, perhaps
concrete hopes for a cure, the nine people
in hospice all faced a terminal prognosis.
As they prepared for death, each
wanted to make choices in synch with
his or her personal values. One woman
expressed a sense of completion in her
relationships with family and friends, in
part by passing on her relish recipe to
her children. Others spoke of a desire
for reconciliation, for communication
with family and closure of important
relationships in their lives. Others
expressed regrets and spoke of a desire
for forgiveness. One described his feelings
of gratitude and appreciation for all
that he had received in his life. Several
were working on finishing business:
making a will or funeral arrangements,
tending to legal or financial matters, or
taking trips.
For these patients, it was important
to talk about death with their family and
others, to discuss specific treatments, rituals,
or requests. Although to some extent
these efforts represent a way to assert
control over their dying, in acknowledging
a desire to die appropriately we should
not think of managing the dying process
so that a person meets a goal of "dying
well." The key point is that the experience
is of value and is meaningful for the person
and their family.
MEANING
I remember when Joe built the Titanic.
You know, Joe was the first patient
that I really, really came close to that
died. He had built this 3-D Titanic
puzzle while he was leukemic . . . He
didn't have anything else to do, so his
wife bought him these 3-D puzzles
and he built a Titanic. That's what he
was, he was the Titanic! I mean, everything
that could go wrong, went wrong
for him. And I remember one of the
nurses, when he finished it, she went
and got this big Styrofoam cup and
filled it with ice and put it in front of
the Titanic. (Laughter) It was the iceberg
. . . You know, and it was like this
underlying—nobody would say it—but it
was this underlying metaphor for what
was happening to him.
—a chaplain
People facing the end of life usually
return to long-neglected questions of
what really counts in life. Faced with the
ultimate end, one's mind turns to questions
such as: Why is this happening to
me? What has my life been all about?
How is all this meaningful to me, to the
person I've been, am now, and will be as
my death approaches? There is a need to
make sense of what's happening, to find
some purpose that will enable them to
reconcile their feelings and restore a sense
of connection to self, God, and others.
Many see little meaning in their
narrowed and shortened future as they
are forced to deal with friends, family,
and caregivers in new and embarrassing
ways. Where once they helped lift burdens
from others, they have now become
a burden. They may feel betrayed by
their own bodies, or feel cast out from the
society of the healthy. Some seemed
overwhelmed by feelings of isolation,
abandonment, even self-hatred, fear, and
anger. Some spoke of healing as the
restoration of wholeness or the integration
of their illness into their lives in a
way that restored purpose and value.
Spirituality seeks meaning; it also seeks
completion, fulfillment, wholeness, integration,
and harmony. One can experience
completeness, even in the midst of
disease or while dying. On the spiritual
plane, this spiritual sense of meaning is
at the heart of end-of-life care.
UNMET SPIRITUAL NEEDS
And I want someone to say, "It really
doesn't matter to me in this relationship"—
or something along those
lines—"It really doesn't matter to me in
this relationship, but I still like you,
I'm still with you, and I'm not going to
abandon you."
—a congregant
Based on the interviews and observations,
virtually every patient in the hospital,
hospice, or congregations had lost at
least some elements of their routine forms
of religious expression. For some, the
physical or cognitive challenges associated
with their life-threatening illness—or
with the palliation—limited their ability to
pray or to participate in other religious
activities.
Others found that religious leaders
distanced themselves because of fear
and stigma, or failed to realize their
needs or the needs of their family caregivers
for comfort or spiritual support.
Patients were angry at the failure to recognize and appreciate their need for
ongoing, sustained support. While clergy
offered expressions of hope, usually
couched in theological terms, patients
also wanted their presence as committed
companions. That the clergy, broadly
speaking, sometimes do not meet these
spiritual needs, may contribute to people's
reluctance to trust clergy with their
spiritual lives during the trajectory of
their illness—the reluctance captured in
the Gallup survey.
People want to be able to tell their
stories and to be heard. Due to restrictions
on caregivers' time and other distractions,
however, patients often do not
feel that they are heard. In the face of life-altering
events, they feel as if their unique
identity or self is in danger of being lost
or overlooked, especially by those who
profess to care for them.
Also unmet is the patient's desire to
be recognized in the moment, apart from
preconceptions or some category assigned
to them by their caregivers. Based on the
observations and interviews, staff can
demonstrate institutional "blinders,"
appearing more concerned with getting
their jobs done than with being present
and available to the patient.
If patients feel that the chaplain or
clergy person is not genuinely present or
attentive, they may not share their concerns.
They know when the caregiver is
asking questions taken "off an institutional
sheet." People suspect that if they
told the truth—that "everything's falling
apart," that "I'm feeling estranged from
my family" or "from my pastor," that "I
hate what's happening to me"—if they
open themselves up that way, they reveal
their vulnerability and a need for a lot of
support from the institution. Some
patients fear that they would not receive
that support.
If traditional spiritual beliefs or
practices do not provide the support and
meaning that patients want, they will
seek that support outside their tradition.
For example, hospital chaplains note
individualistic innovation among patients
and families, underscoring the suspicion
that at least some patients desire more
personal meaning making. Hospital and
hospice chaplains take note of increasing
expressions of spirituality from outside
mainstream religion, for example, references
to Mother Earth and Nature, the
use of stones, crystals, open flames, and
so forth, as a focus for spiritual activity.
One hospice patient with cancer had
developed a "home-made" activity in
which he and his family would "anoint"
him with holy water or oil, while meditating
on health and healing.
One congregational clergy person
mentioned that some congregants are
exploring the use of crystals. He said
that he wanted to learn more about such
New Age approaches, to offer something
more appealing to his congregation's
members who are searching for something
"more" than what the tradition
offers. Other congregational clergy did
not indicate any particular experience
with alternative beliefs or practices in
caring for congregants. This observation
is not really surprising. First, the sample
of congregational clergy in the study was
small. Second, these congregational clergy
most directly represented established
religious traditions, with their theological
and institutional beliefs, and were more
particular in their understanding of spirituality
and spiritual practices than were
hospital or hospice chaplains. Congregants
who adopt alternative expressions
of spirituality might be reluctant to share
them with their pastor.
The nature of the relationship or
connection between clergy caregiver and
the person facing the end of life is a key
component of spiritual care. As already
suggested, the nature of the relationship
between clergy and patient
enhanced or hindered the scope and
depth of spiritual care. The more trust
and comfort established between the
two parties, the more intimate and open
the connections seemed. Although it
can be apparent immediately, such rapport
usually takes time and effort to
establish. Unfortunately, a number of
obstacles impinge on the relationship
and on spiritual care.
OBSTACLES TO SPIRITUAL CARE
AT THE END OF LIFE
What are the barriers, obstacles, or
challenges to spiritual care at the end
of life? Are these part of society generally
in this country?
Have you experienced barriers, obstacles,
or challenges at your institution,
such as heavy case loads, paperwork,
lack of staff support, lack of privacy?
Have you reflected on your own personal
barriers, for example, your own
anxiety about death or an uncertainty
about what to say?
—questions from the clergy
interviews
Researchers asked these questions
of the hospital, hospice, and congregational
clergy. There was ample evidence
in their answers—and in the observations
at the various sites—of a number of social,
institutional, and personal barriers to
spiritual care.
SOCIAL OBSTACLES
People expect too much from
medicine. They get angry when no
miracle appears. They don't want to
give up, until it's too late.
—a chaplain
One chaplain shared his dismay and
even anger at the many lapsed Catholic
patients who all of a sudden want rituals
performed in their crisis time. He
knows they have no ties to the church
and that they have only a vague sense
of theology. They want last rites, for
example, even though they don't know
what it's called or that Vatican II [recast
the rite as Sacrament of the Sick].
When he tells them they should contact
their parish priest, they say, "No,"
since they haven't attended for years.
—hospital observation
The clergy who participated in the
study identified a number of social barriers
or obstacles to spiritual care at the
end of life. One is a general unwillingness
by many people to admit their mortality.
The SUPPORT study showed that
patients, families, and physicians are
terribly reluctant to raise the subject of
death and to talk honestly with each
other about end-of-life care. It is as if
death and dying are taboo subjects.
Much of the effort to educate physicians
about patients' decision making overlooks
the fact that many patients and
their families never give up hope of
recovery until the very end, if at all. In
part this reluctance is due to the very
successes of biomedicine over the last
decades; people seem to have an unrealistic
expectation that medicine can
always provide another treatment or a
miracle cure.
Given the general movement
towards secularism within the American
society, another barrier that chaplains
encounter are "lapsed" patients and families
unconnected with a religious tradition
or faith community. These people
find themselves in crisis, facing life-threatening
illness, without the invest-ment
in and support of a community
sharing at least similar beliefs, values, and
practices. While many people who reject
religion have an avowed spiritual orientation,
they may lack a community that
would support them in their illness.
A factor that may contribute to a
lack of religious or spiritual community
is the widespread social mobility of people.
Due in part to changes in work
expectations, a more mobile society may
put down shallower roots in community.
Many of the patients in the study had
moved several times in their lives, and a
number presently were away from their
homes, being cared for by relatives. As a
result, even those affiliated with a faith
community found themselves cut off
from familiar relationships and environments.
Clergy also noted changes in the
American family structure that contribute
to the challenges they face in supporting
patients during their illness. Patients may
be estranged from their families or they
may live far away from them. Other
patients worry about the stresses that
life-threatening illness places on their
families, such as the burdens on a spouse
who must work, look after the family,
and care for the sick person.
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Second Opinion #10
Publisher: Park Ridge Center, Chicago
Date: April, 2002.
ISSN: 0890-1570
112 pages.
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