Music Therapy in
the Treatment of
Anxiety and Fear in
Terminal Pediatric
Patients
TRUDY SHULMAN FAGEN, MA., C.M.T.
Music therapy is an effective tool in uncovering and working through fears
and anxieties related to death and mourning. The population examined here
is the latency age child and early adolescent at the end stage of life-from
time of diagnosis of terminal illness to death. Presented are excerpts of case
studies that display a variety of music therapy techniques. Brief analysis of
case content are also included to further enable the reader to view “grief
work” as part of a larger therapeutic process. The concerns presented are
based largely on clinical experiences aswell as interviews with the oncology
patients and staff of Memorial Sloan Kettering Cancer Center in New York
City.
In order to approach issues of mortality it is essential to first consider the
psychosocial responses of the child within the context of his illness,
treatment, hospitalization, and family system. It is also necessary to have a
basic understanding of cancer pathology, its side effects and medical
treatment, because the music therapy process in many ways is inseparable
from the course of the disease and related familial responses.
I have drawn upon many psychological constructs in tying to understand
the basic concerns of these patients and in adapting related techniques. The
luxury of a long-term psychoanalytic approach is not always possible or
helpful during a crisis situation, yet the recognition of basic anxiety
(Freudian) in a child undergoing treatment is sometimes crucial. Equally
applicable are the Gestalt techniques of Fritz Perls and Joseph Zinker as well
as the philosophies of Abraham Maslow, Karen Horney, Eric Erikson, and
Carl Rogers. Each music therapy session can be analyzed on a variety of
levels. A comprehensive treatment protocol for anxiety in hospitalized
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Fagen
14
pediatric cancer patients might also be analyzed from each psychological
perspective.
Some therapists of the terminally ill have categorized the stages of
psychological strategy Kubler-Ross (1969) describes aprogression of denial
and isolation, anger, bargaining, depression, and acceptance, while
Oremland and Oremland (1973) perceive fear, anger, and guilt. Although I
saw most of these stages in the terminally ill children, I have yet to witness
acceptance in a child; complacency, or more often resignation, is better
assigned. This resignation may be exhibited by some adolescents who
consciously choose their time to die, i.e., on a birthday or after having
completed a project. These teenagers may make statements to the ward or
bid goodbye to their friends. It is my contention that if one began with either
predetermined construct it would not be difficult to gather case material to
support it. This is not my purpose. Rather I have chosen to work with
anxieties and fears as they arise.
Applicability
OF MUSIC THERAPY
In examining issues of fear and anxiety in children with cancer it is essential
to realize why music therapy is an appropriate intervention. Well-staffed
hospitals offer a variety of medical and nonmedical professional personnel
to promote a child’s adjustment to hospitalization and illness. Such
personnel often have training and expertise in the medical education of
patients as well as the psychological inpact of the child’s illness. Why then is
music therapy not only applicable but sometimes indispensable?
“The act of creation is as basic a need asbreathing or making love. Making
art is a way of concretizing our need to a broader and deeper range of living”
(Zinker, 1977, p. 9). The nature of the music experience inherently provides
creative energy that is usually lost in the hospital shuffle. Music not only
enriches the quality of one’s life but may help provide the impetus to live.
Music therapy is particularly adaptive to all human conditions-even
a
comatose patient at the end stage of life may benefit from a listening or
guided imagery activity Music has the capacity to energize or relax, to
promote thought or distraction. The music therapy session provides the
opportunity for infinite expression in what is a very limited environment.
Music expresses both a statement of reality and an escape into fantasy.
Hospital life need not be a stagnant passing of time; new and moving
expressions can originate at the bedside. The patient, regardless of disease
stage, is a vital psychodynamic being. The withdrawn patient who is unable
or unwilling to verbalize his thoughts may be able to share the beauty of
music listening with another. The listening experience can, in turn, create a
bond between patient and therapist that encourages the sharing ofthoughts
and feelings.
Anxiety and Fear in Terminally
I5
III
Techniques
The approach employed in this work is eclectic, a synthesis of techniques
first pioneered by P. Nordoff and C. Robbins, Helen Bonny, S. Munroe,
Evelyn Heimlich and others. The children presented were seen on a one-to­
one basis as well as in group therapy. A variety of music thenpy techniques,
song writing and selection, lyric substitution, improvisation, and guided
imagery encouraged the child to release his fears through a creative act.
Music can provide a medium forgenuine, powerful expression and facilitate
a therapeutic relationship which in turn supplies the security and trust that
enables the child to let go of his fears.
Anxiety about death may not be verbalized immediately, but the child’s
reactions do surface in concern about hiscondition and treatment. The child
may be hesitant to voice these concerns to his favorite nurse or doctor The
bond created by a satisfying relationship (music therapy, nonmedical)
within the confines of a hospital provides a therapeutic vent for frustrating
medical experiences. The patient is then freed to verbalize: “The medicine’s
not working, I feel worse,” or “There is not much left they can give me.. ”
PERSONALIZED CONFRONTATIONS
WITH DEATH
Children with cancer think about dying. Perceptions of death appear to vary
with cognitive level, spiritual affliation, and sociocultural education.
“Children do not have perhaps an adult understanding of death, but they
experience it, they know it, and have developed their own fantasiesabout it”
(Day, 1972, p, 58). Young children have aconfused sense of time; thusdeath
may not be viewed as permanent. Television cartoons depict characters who
are run over by steam rollers only to “pop” back into shape and scamper off.
while religions preach resurrection. Well-intentioned adults may also serve
to further confuse the young child’s temporal death perception by speaking
in euphemisms, “He went to sleep..., or “He’s far away.”
A child’s first personal confrontation with death issues is usually
precipitated by the death of a grandparent or pet. The permanence of death
may be more clearly understood after the demise of a loved one. In coming
to terms with his grief, the child may “kill” toys in play or sing songs of total
destruction.
Children with cancer, unlike their healthy peers, confront the possibility
of their own premature death. For the pediatric oncology patient, death is a
new and real phenomenon. This confrontation usually occurs at one of three
times-at the time of diagnosis and/or relapse, the death ofanother patient,
or during a personal medical crisis. An onslaught of unresolved grief may
surface in this environment. The music therapy session provides an
opportunity for release of unresolved grief as well as possible anticipatory
mourning.
16
Precipitated
by Diagnosis
D.
D, a newly diagnosed 7-year-old with aplastic anemia (a sometimes fatal blood
disease), was encouraged through the use of role playing with stuffed animals, to
improvise a musical that expressed his concerns. A guitar was used to integrate
the lyrics with the music. His lyrics told the story of a past event but were mixed
with anxiety about his present condition:
“He got run over by a big truck, my little dog was also under the truck hut was
too small to get hurt I’d rather my cat died ... make the little dog roller skate
away from the hospital, his fevers are all killed...”
D.‘s song and play reflect his grief and desire for more control over the
death event. He preferred to kill the catand prevent the “little dog” (perhaps
himself) from dying becausehe “was too small!” Through the dog’s death,
D. understood the permanence of death. Currently hospitalized for
complications in treatment (fevers), D. chose to “kill” his fevers using the
permanence of death to banish them forever.
Soonafterwards,D. askedto learn the ukelele sothat he could accompany
his own songs.The ukelele alsobecameatransitional object that helped him
cope with repeated hospitalizations. During his time as an in-patient D.
wrote numerous songsabout his treatment. “Killing” was a recurrent theme
that surfaced particularly in times of stress.
C
The preadolescent fully educated about his disease and statistical
prognosis questions his own mortality. This concern maybe too threatening
to verbalize openly but it can be indirectly expressedduring music therapy
activities.
C., a 13-year-old with full knowledge other poor prognosis (metastatic ovarian
cancer), leafed through songbooks during her individual music therapy session.
As she selected songs “that I might want to sing in the future. .” and Iyrics that
were meaningful, she discussed their significance.
“‘This one (Song Sung Blue, Neil Diamond, 1972) is nice, it was my uncle’s
favorite, he died a little while ago... I think of him whenever I hear it... it’s nice to
have something to remember someone by... I really like this one (American Pie,
Don McClean, 1971). especially the second pan, these words say that he dies...
‘Them good ole boys were drinkin‘ whiskey and rye. Singin’ this’ll be the day that
I die.‘This one (Seasons in the Sun, Breland McKuen, 1971) is really sad, it’s from
a movie where this girl dies, she was really young...”
From a repertoire of over 200 songs, C. carefully selected material that
related to death. Unable to directly voice concerns about her own tenuous
future, it was possible in the music therapy sessionto shareand relate song
material that expressed it for her. Calm acceptanceand willingness of the
therapist to sing and discuss death and dying encouraged C. to discuss her
own fears more freely.
Anxietyand Fearin Terminally Ill
17
This music therapy session served to help “break the ice” on some very
difficult issues, such as recurrent separations from her friends due to
hospitalization, traumatic departure from a previously carefreelifestyle, and
an initial confrontation on a conscious and verbalized level of the possible
eventuality of her own death. C. was soon discharged as an out-patient.
Death of a Friend
Children at Memorial Hospital are likely to befriend patients who are dying.
When a death occurs on the ward, staff are discreet but honest in their
communications to all of the children. Sadnessis sharedby all and comfort is
given to the survivors.Sucha death affectseachpatient on the floor uniquely,
but it frightens them all, particularly children who sharethe samediagnosis
as the deceased.
For the newly diagnosed patient, the death of a newly acquainted friend
first presents itself in disbelief. This child asks many staff members to
confirm his knowledge and only acceptsthe truth aftercountless questions
are answered.When the reality of the event is confirmed, the surviving child
may be overwhelmed.
E.
Nine-year old E. hadrecently undergone many traumas. Caught in the process
of adjusting to repeated hospitalization,
aggressive chemotherapy, and
amputation, E. began to cope with long-term hospital life by making friends with
veteran patients and actively participating in both group and individual music
therapy. After many weeks of therapy, trust was established between patient and
therapist. E., whose favorite music activity was to record his own lyrics and drum
accompaniment, stopped the tape in midsession.
“I can trust you. you won’t lie to me... Is it true that the little boy down the hall
died? What happened to him... did he cry.. did ithurt... were you there... He really
died... Where is he now? How could God let it happen, he was just a little boy...
What did he have... not the same as me. He was sicker than me.” later, E.asked if
the deceased child could hear us talking.
E.needed many more daysfollowing the music therapysessionto son out
the cascadeof fearshe was experiencing asa result of the death. During this
time he repeatedly asked questions of the staffmembers whom he trusted
most. E.‘sconcern with the diagnosis of the deceasedchild, aswell aswith
the pain the child may have felt, reflected anxiety about his own condition.
While the relationship previously established in music therapy assuredhim
that he wouldn’t be lied to, the music activities served to relax E.enough to
voice his concerns directly.
Weekslater, E.was confronted with the death of yet another hospitalized
friend. He responded with appropriate sadnessand on his own initiative
sought out support from staffmembers whom he had previously confided
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Fagen
in. He checked to make sure that they too were aware of the death and “...had
been told in a good way.”
In music therapy, E. asked to listen to the tapes he had recorded
previously. The familiarity of his own “drum songs” provided security in a
time of emotional flux. These listening sessions enabled him to relax and
gain courage to further explore the grieving process. His reaction to death
this time by-passed denial. He mourned openly and expressed deep
sympathy for his friend and family. Now E.was able to give support aswell as
receive it.
Medical Crisis
Thoughts concerning death recur during a prolonged and degenerative
period of hospitalization as well as in times of medical crisis. These thoughts
may be too threatening to openly acknowledge and will often surface in
song material.
A.
Ten-year-old A, a new member to group music therapy, had undergone a life­
threatening medical crisis the previous week. He was referred to the music
therapy group as a result of self-imposed isolation for being despondent and
uncommunicative.
A sat quietly and passively. His participation in the group‘s(sang) activity was
limited to frequent eye contact and an occasional smile Midway through the
session the song “Don Gate” was sung, and A immediately began to sing and
shout,
“I knew the rest of that song He fell off the roof and broke his leg and died On
the way to his funeral, they passed a fish store and he smelled the fish and woke
up.”
After completing the song, A participated more fully in the session, playing the
tambourine against his I.V. pole and improvising rhythms.
The recounting of “Don Gato” mirrored A’s own experience. He had
survived a precarious medical crisis; he “smelled the fish and woke up.”
Singing the song for the group enabled A to share his private burden with
the group without feeling threatened. This catharsis removed the fear­
ladened barriers that had separated him from his peers. After the session he
socialized more freely, and no longer spent most of the day in his room.
Subsequent music therapy sessions gave A. the opportunity to continue
exploring his fears about death.
A sat down at the piano and requested that we play a duet about skeletons As
we improvised a, the extreme ends of the piano A. began his story of ”a haunted
house in which two skeletons lived The skeletons were friend. one named
Bones and the other had no name.” After improvising a musical conversation
between the skeletons A ceased playing and requested that the must become
more frightening As I complied, he imploringly conducted and verbally urged
me to make the music” even scarier... more an you do it more? Ibet itcould get
even scarier but that's good
"A sat quietly for a moment as the music ended
and then requested familiar children‘s songs
The creation of a friendly skeleton improvisation emancipated some of
A.'s suppressed anxiety In commanding the music to become progressively
frightening he sought to control and master his fears in a tangible way. In
resolving the music A actualized the boundaries of his own fear. He
recognized that the music had the potential of becoming even more
frightening. He chose to resolve the music at a level he could copewith. The
return to a pre-structured framework of children’s songs was a soothing and
safe closure to a risky session.
The partial release of A’s fear of death surfaced frequently in subsequent
music therapy sessions. Although he continued to concern himself with
death, the images created through sound (percussion) and lyrics were less
constricted and more relaxed in tenor. His songs increasingly focused on
majestic stallions “who roamed freely in the sky.” Music making in therapy
helped A liberate his own fears, as demonstrated by his increased social
interaction and a more relaxed demeanor.
WORKING THROUGH FEAR, PAIN, AND SEPARATION
The dying child expresses many fears of pain and separation. He fears that he
will be alone at the final moment and that it will hurt Today’s technology
mercifully assures the child of only some discomfort. As the child progresses
in his illness he learns to trust his medicine. Large dosages of pain killers,
however, frequently produce side effects; of these, hallucinations are
perhaps the most debilitating psychologically.
Fears Related to Drug-Induced
Halluciations
Many terminal patients have expressed tremendous fear of the images and
sensations they hallucinate. The patient is then tom between insufferable
pain and terrifying hallucinations. The images described by these children,
such as “travelling on avery fast train”(J.) or "free falling in outerspace” (M.)
are strikingly similar to those described in Raymond A Moody's life After
Life (1975), a collection of interviews with people who were declared
clinically dead and later were revived.
If the patient is willing, exploring these images in music therapy can be
helpful; even the most fearsome fantasies bom of these hallucinations can
be eliminated. Instruments are made available, the use of voice is
encouraged, if such use is not physically uncomfortable, and patients are
asked to depict and expand their images, to embellish and exaggerate them
with sound effects
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Fagen
After the image has been extended to its fullest, verbal processing may
take place. The foundation for verbal exploration is laid by asking the patient
which aspect of the image was most frightening and whether it can be related
to any other experience he may have had.
Patients often find that the images do not recur after they have been
explored in this way-musically
and later verbally. Using music and sound
effects reifies the hallucination. Thinking of a sound may be more
frightening than actually hearing it. When the patient materially produces his
fantasy through sound and words, he may come to realize the image is his
own creation, not an outside evil force. Fantasies arc less alarming when they
are recognized as one’s own.
Withdrawal and Apathy
Some children experience a measure ofloneliness when they are dying. This
may be a result of poor familial coping and communication or the patient’s
own withdrawal. As the patient becomes weaker he disembodies his
thoughts trom his physical being. This denial of the body may be evidenced
by superficial apathy and a seeming lack of self-consciousness. Such
behavior also may be seen in healthier patients during prolonged
hospitalization.
In music therapy, a patient who previously expressed clear musical
preferences will now resist decision making. It will be difficult for this
patient to substitute lyrics. The total attitude of this patient reflects, “You
know what’s best... I don’t know...” It is possible to engage these patients in
listening activities that require little active physical participation. For
example, guided imagery can encourage the patient to personalize his
thoughts by thinking of favorite places. He remembers places that are
special, and focuses on the positive feelings associated with them. The
child’s imagination is reactivated and a sense of self emerges.
Isolation from the Family
The loneliness caused by ineffective communication in a family can be
helped in pan through a group music therapy session. Shared music
experiences incite better verbal communication. For the child whose family
is unable to spend much time with him, regularly scheduled music therapy
may help fill pan of the familial gap.
Sensitivity to Hospital Routine
The terminal pediatric patient who has spent much time in the hospital is
acutely aware of routines and procedures. The hospital and its staff come to
represent security; and there may even be resistance on the pan of the
patient to return home. Likewise, the terminal patient often becomes
familiar with medical procedures used in emergency situations. He may
express fear of being housed in a private room, for that may have been where
a peer died.
The staff (and music therapist) must be sensitive to the child’s
apprehensions, helping him to verbalize his fears and dispel frightening
fantasies. In song, children are encouraged to describe their favorite staff
members with whom they are comfortable, or to enumerate the good or bad
aspects of being in a private room.
Fear of Death
Some children develop a fear of sleeping towards the end of their illness.
They may want to sleep but are unable or will not allow themselves to do so.
Soft soothing music such as lullabies help them relax. “If you sing to me
when I go to sleep, I know I won’t be alone ‘cause I can still hear you when I
am sleeping” (R.).
Children who openly verbalize about death often express an enormous
amount of fear of the unknown Although it is not possible to supply
definitive answers to the many questions posed at this time, music therapy
serves to explore the child’s concept of death, hopefully easing some
anxiety
ASthe time of death nears, the family may envelop the child. Although it
is important to bring some closure to the relationship between patient and
therapist, the privacy of the family must take precedence. If the child is
capable, a legacy of tapes can be made (for both parents and therapist).
Some families find comfort in singing spiritual music at this time. While
accepting the tragedy of the patient’s condition one must affirm the child’s
continuing right to be engaged in a creative act.
CONCLUSIONS
Music therapy is by no means an all-encompassing panacea to alleviate the
enormous burden that terminal illness places on a child and his family, but it
is significantly helpful in treating their anxiety and fear. In some cases, it is
an even irreplaceable medium of communication. It is not realistic to
attempt to resolve all the many fears related to dying in one or even many
music therapy sessions. The therapeutic disclosure and resolution of these
fears is a slow, and sometimes sporadic, continuing process.
The goals sought with this population vary a great deal. Each individual
child and family must pass through their own “anxiety block;” the music
therapist’s role is to facilitate this passage in a more open and less frightening
manner. There appears to be no pattern of typical musical responses, nor are
Fagen
22
the frequency and duration of music therapy sessionsfixed. It is crucial not
to force death-related issues,but rather to wait and recognize the initial and
subtle euphemisms as they surface. Only then is it possible to translate
masked innuendos into direct and honest statements.
Flexibility is essentialwhen working with this population, for a patient’s
condition may be dramatically transformed from one day to the next. It is
necessaryto be able to quickly adapt from energetic music making to almost
effortless listening. The music itself requires a varied repertoire and
sometimes the hum of hospital machinery must be integrated into a child’s
song or silence.
In working with pediatric cancer patients one must seek out the healthy
aspectsof very ill people. The creativelife of the child must not be dismissed
as secondary in times of illness, but rather must share equal importance
with other intellectual and physical needs. Each moment deservesto be
filled with an experience of the highest quality. Life even tragically cut short
can be full and meaningful. Watching children die is draining, but enabling
them to live richly, even if only for an hour, quickens the spirit. In the faceof
deep despair it is possible to find something very valuable, and very
precious.
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BIOGRAPHY
Trudy Shulman Fagen, MA., C.M.T. graduated from Albany State University with a B.A. in music
composition and is a certified teacher with the New York State Board of Regents. She has earned
a Master of Arts in music therapy at New York University. She now resides in Boston and is
currently establishing a private group muss therapy practice and Iooks forward to continuing
more hospital and hospice work