Many studies have been conducted over the last several
years suggesting a person's response to terminal illness
appears to parallel a total life pattern of dealing with
difficult events preceding the illness [1-3]. These illnesses
often have roots in the person's mode of dealing with
conflict both in the nuclear family and across generations.
In this sense, the consideration is of a "terminal family"
where the unit of treatment is the larger family, rather
than the isolated individual. Health care providers can
assist patients to cope with their illness as it exists in the
context of their lives and family, and to explore the
symbolic and literal meaning the particular illness holds
for the patients [4]. In this article, clinical approaches are
elucidated for working with the terminally ill family that
may be used by staff to facilitate the "working through"
process of the terminal illness.
FAMILY OF THE TERMINALLY ILL
The patient who is terminally ill must be seen in the
context of the family. Kubler-Ross [5] echoes this
sentiment in her writings: "We cannot help the terminally
ill patient in a really meaningful way if we do not
include his family" (p. 86). The family of the terminally
ill patient can be seen as a complex interweaving of
consciously and unconsciously expressed feelings,
thoughts and interactions and implicit rules about how to
express affect. Each family has, over the course of
generations, evolved its own comfort level of emotional
and physical functionality, that circularly influences the
extent to which harmonious homeostasis may be
maintained at the expense of growth promoting conflict.
Some studies have shown particular family styles of
interacting to be related to different types of terminal
illness. For example, "cancer families" are ones that
generally have been found to repress feelings, erect heavy
interpersonal boundaries, and lack close affective
communications [6]. The family members typically are
seen as either highly independent ~ and. frequently
unemotional, or exceedingly sweet and pleasant,
expressing little, or no, negative emotions.
In the system’s perspective of terminal illness, the
whole family is affected, and the terminally ill patient has
a new role in the family that may serve many functions.
Thoughts and interactions that previously were directed to
the sick family member, may now be channeled to, others
in the family, to again create a kind of homeostasis. For
example, if the coronary heart patient was the one who
usually doled out love and support, family members must
now have these needs met elsewhere in of outside of the
family [7,8].
Feelings that may not have always been conscious arise
in families at times of physically-induced stress and may
generate unexpected behaviors. As the stress in the family
system increases, the chronicity of new behaviors may
indicate the extent to which the family's emotional and
'cognitive systems had been premorbidly fused. Family
members may become overly protective and loving. In
this instance, the illness may serve to prevent anger or
other negative feelings from being expressed in the
family. In contrast, the illness may serve to stir up
previously unexpressed negative feelings; the family may
"wish you were dead." In this instance, the staff must be
prepared to serve as a kind of therapeutic substitute family
that can offer more positive support and encouragement to
the patient. Family members may also feel that they are
responsible for "killing" the patient and may be
experiencing tremendous guilt [6]. Family members may
consequently avoid contact with the patient, or lavish the
patient with love as a kind of reaction formation to their
real desire to avoid the family member.
.
Depending on whether the patient is a child or an adult,
perceptions and reactions to the illness may also vary.
The child may see the terminally ill parent as rejecting
him; in contrast, the terminally ill child may be seen as
fitting into a pattern in which the terminally ill child has
somehow carried the "fate of the family" -- either having
been unwanted, a disappointment, or having been born at
a difficult time for the couple [9]. It is almost as if the
child is born into an existential constellation of
expectations that precede the immediate generation. This
constellation is transgenerational in that the expectations
are common to multi-generations, beyond the expectations
of the individual or just the present generation.
Boszorrnenyi-Nagi and Ulrich [10] have referred to this as
a patient's "legacy." For example, a female child may
carry the fate of many generations' unconscious feelings
with the belief that the woman in the family is the one
who maintains the affective control. In addition, the
family of origin itself may impose a kind of balance sheet
for "who owes what to whom" in the family.
Boszorrnenyi-Nagi and Ulrich [10] have referred to this as
a family's "ledger."
One family with whom the author worked, involved a
28-year-old woman recently diagnosed as having leukemia.
Jenny had inherited the legacy in her family that daughters
are unacceptable and compete with .the mother for the
father's attention. When Jenny was a child, she was
labeled a "jinx" for "breaking up her parent's marriage,"
thus accumulating a ledger that had a tremendous
symbolic price attached. Indeed, "the children are ethically
bound to accommodate their lives somehow to their
legacies" [10, p, 163]. Feeling that she was a "misfit"
and was responsible for others' misfortune, Jenny may
have been unconsciously "paying off' her legacy through
her illness. Jenny's self-destructive inclination persisted
throughout her life and clearly resurfaced during her
illness. This was observed in her deep religious belief
that it was God's will that she should die. Jenny
expressed her own sentiments: "If I die, the family can
come together again."
In another clinical situation, working with a nine-year-
old child having cancer illustrates a similar point. After a
few sessions of family therapy, it became apparent that
Kevin, the oldest of five step brothers and sisters, grew up
in a family where the mother had deserted him
continually. She moved out of the family to live with
different husbands after they had sequentially disappointed
her in some way. Kevin was always left to comfort his
grandmother who took care of -the children, and who
herself had also been left and disappointed by men
throughout her life. The message (legacy) in little
Kevin's life was clearly: "Men are a disappointment and
unreliable." The ledger for Kevin then became: "You can
make up for the disappointments in our lives by taking
care of grandma. Having fun only serves to make it hard
on the women." Kevin developed a. ganglio-
neuroblastoma at age five, and was in intractable pain
until age nine when his cancer was diagnosed and
surgically removed.
Both of these clinical examples are important
illustrations of psychodynamics frequently seen in family
therapy work. In one situation, the child was cast out of
the family; in the other, the child assumed the parenting
position. In both, legacies were inherited, and ledgers
were being paid off in individual ways. The child with a
terminal illness may serve a functional position between
the parents or may present an embodiment of a kind of
symbolic generational transmission process. A common
clinical error would be to focus upon the child, rather than
assisting other family members' to deal with their
problematic relationship. In other words, the presentation
of a physical illness in a family may not only hold
functional significance in the immediate family setting,
but may be a symbolic representation of a "legacy" that is
trans generational.
PATIENT RESPONSES
TO TERMINAL ILLNESS
Thus far, in this article the focus has been on the
emotional responses of the family unit to terminal illness.
In the systems perspective advocated, it is also important
to facilitate expression of the identified patient's own
intrapersonal reactions to his illness.
Thinking about one's vulnerability and impending pain
and death may produce feelings of anxiety or panic [9].
Regression, involving continual crying or posturing in a
fetal position is also a common response that may
accompany the anxiety and panic reactions [1]. The
patient may feel "swallowed" up by thoughts of
helplessness or perhaps may resort to a developmentally
early behavior that proved effective in eliciting comfort
from parental figures. Although frequently frightening to
witness, the immediate staff can help by establishing
rapport and bonding with the patient, which will be
crucial in alleviating the fear and aloneness that the patient
may feel.
In response to the internal disequilibrium and panic, the
patient may also experience varying degrees of
dissociation from reality. One such patient with whom I
worked (Alice), was suffering from metastatic cancer of
the spine and ribs. The pain from Alice's recurrent cancer,
which had been in remission for some months, coupled
with her belief that she was dying, prompted her to
contact the author. Early in our work. together, I
discovered that Alice was feeling isolated and alienated
from her family, who was actively denying Alice’s reports
of pain and fears that she was dying. Feeling unsupported
by her family, Alice became vividly in touch with a
"spirit" whose voice would come and speak to her. Alice
became frightened by the Spanish-speaking spirit who she
at first described as an "old woman whose silence pierced
my loneliness." As we spent more time together, Alice
was able to dialogue with her spirit and gain information
and understanding about her life. She began to see this
spirit as a symbolic companion who could accompany her
through intense pain and loneliness. As she was able to
open up communication with her "inner family," Alice
was able to take a greater risk in asking for support from
her "outer" family, particularly her husband and daughter.
Angry and paranoid feelings may also be expressed by
the terminally ill patient. This .type of difficult patient
may approach his world with suspicion, projecting
feelings onto the staff in the form of blame for inadequate
care {"He didn't take my concerns seriously, otherwise he
would have discovered my problem earlier"), or lack of
genuine interest in the person ("I don't feel my doctor
likes to talk to me"). Understanding and acceptance of the
difficulty this patient is having in accepting the illness
will again strengthen the relationship between the patient
and the staff, rather than the staff reacting out of
frustration ("Well, damn it, it's not my fault you're
sick!").
Another common reaction to terminal illness is
depression, in which the patient seems to "go away"
somewhere, withdrawing, becoming "vacant", sometimes
saying: "It's just no use trying anymore." Unlike the
angry patient who projects blame onto others, this person
interjects hostile feelings and holds them against himself.
Staff who respond with optimism in attempts to boost
patient morale, may be well intended, but may actually
alienate the patient who realistically acknowledges the
ultimate consequence of his death. Instead, empathy and
again, a close supportive relationship with staff, can foster
the comfort and help the patient needs in dealing with his
incapacitating depression.
A final common reaction to terminal illness is seen in
the patient who takes on deep religious beliefs or
ritualistic practices. Religious beliefs can contribute to a
sense of control or hope, or perhaps may serve as a way to
avoid the terrifying acceptance of the patient's own finite
existence (''I'm looking forward to the life hereafter") or
anger about dying ("If God wills it, then it's meant to be;
so who am I to be angry?"). In the previously cited
clinical example, Jenny developed deep religious beliefs in
the terminal phases of her illness. This conversion and
deference to a "higher power," may have represented the
only way Jenny could psychologically understand the
legacy she had symbolically inherited, and unconsciously
experienced.
DISCUSSION
These are just a few examples that demonstrate the
importance of conducting intensive work with families of
the cancer patient. This approach does not advocate the
exclusion of the patient's own feelings. Instead, it is
necessary to enlarge ideas about the role of the outer
illness by understanding the workings of the patient's
inner weaving of intrapersonal experience, within the
outer context of both the immediate and transgenerational
family. Once this system of the terminally ill patient,
embedded within the full family context is elucidated, the
dynamics underlying the individual's reactions to his
illness, as well as those reactions of other family
members, can be more completely understood, experienced
and expressed by the family members themselves.
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