Clinical Approaches To Care Of 
The Terminally Ill Family

Published in The International journal of Psychosomatics, 
33(2): 48-50, 1986

 
Abstract: Presented is the system's perspective of 
considering the terminally ill patient in the context of the 
hospital setting, the nuclear family, and the 
multigenerational family. Clinical examples are given to 
provide illustrations of methods of working with the 
terminally ill individual in these situations.




INTRODUCTION
 
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, damm 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 
introjects 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 transgeneratlonal 
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.



REFERENCES
 
1)  Bahnson, C. Stress and cancer: The slate of the art 
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2)  Derogatis, L., Abeloff, M., and Melisaratos, N. 
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3)  Greer, S., and ' Morris. T. The study of psychological 
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4)  Engelman, S. The symbolic relationship of breast 
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     1984. 

5)  Kubler-Ross, E. On Death· and Dying.
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6)  Bahnson, C. Psychological aspects of cancer. In 
     Pilch, Y.H. _ (Ed.), Surgical Oncology. New York: 
     McGraw·Hill, 1984, pp. 231-253

7)  Minuchin, S. Families and Family Therapy. 
     Cambridge, MA: Harvard University Press, 1974.- 

8)  Winder, A.  Family therapy: A necessary part of the 
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9)  Bahnson, C.  Psychosomatic issues in cancer. In 
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10) Boszormenyi-Nagy, I., and Ulrich, R. Contextual 
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      Handbook of Family Therapy. New York: 
      Brunner/Mazel, 1981, pp. 159-186.





 

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