ARTICLE
Non-compliance
Non-compliance with treatment is a major concern in older children and
adolescents with life threatening disease [1], but also in parents. Many
factors related to non-compliance have been studied [2], but the results
are contradictory [3]. The DSM IV defines non-compliance as the non-observance
of an important aspect of the treatment. The reasons may be discomfort
or the expense it incurs, irrational beliefs and denial of illness, religious
or cultural beliefs, personal value judgments concerning the advantages
and disadvantages of the treatment, personality traits, non adapted styles
of coping or mental illness [4]. It can encompass a wide range of behaviors
from outright refusal of the treatment to discrete behavior that is sometimes
hidden by apparent compliance, which, ultimately, hinders the normal planned
course of treatment.
Many causal factors have been reported. Family factors as concurrent
stresses, disturbed or fragile family units, with pre-existing serious
psychological problems which offer limited support, may increase the risk
of non-compliance [5, 6]. Social, economic or cultural factors [7, 8]
are related to non-compliance if the distance from the medical care or
financial problems are major obstacles, and if the health caregivers do
not offer reasonable chances of curing the child because they lack medical
resources. Personal factors, such as the style of coping, self-esteem
or the desire to be in control may provoke non-compliance [9, 10] in addition
to the illness itself (severity, prognosis, duration) [11]. Poor relations
with the caregivers can also spark reluctance to comply. Non-compliance
can be considered as indicating a feeling of insecurity, of revolt, of
guilt and a lack of confidence, in which case, psychotherapeutic interviews
are particularly helpful [12]. If information is insufficient, excessive
[10, 13], or inadequately imparted there is correlation between it and
non-compliance and the information given [14, 15].
Thus, "compliance in pediatric oncology can be re-conceptualized from
being a focal problem in patient management to an integral aspect of the
psychological changes that the patient and family members undergo in the
face of cancer" [16]. Non-compliance with treatment may be expressed by
the child or by his/her parents, but the causes (and the possibility of
resolving the problem) must be sought in the child's, parents', and staff's
characteristics and situation. In all cases, it raises difficult medical,
nursing, psychological and ethical questions [17-19].
To shed light on the psychological and relational mechanisms that give
rise to non compliance in which the child, the parents and the caregivers
are implicated, and to improve caregivers' skills in dealing with these
difficult situations, we present a thoroughly analyzed case of non-compliance,
and the comments of a pediatrician (USA) and a psychologist (USA).
History
The letters in brackets refer to comparably numbered paragraphs in the
Discussion.
The psychotherapist, member of the treatment team was called by the
staff in the Bone Marrow Transplantation (BMT) unit of the Department
of Pediatric Oncology at Institute Gustave-Roussy: they were hesitant
about undertaking Bernard (B)'s high-dose chemotherapy because he was
uncooperative and refused most of the procedures, and his parents were
non-compliant with isolation requirements (a).
Two months earlier this 10 year-old boy had been treated for a medulloblastoma
in another city where he had undergone incomplete surgery of the floor
of the 4th ventricle, after which he became temporarily mute. The tumor
had spread while he was on subsequent chemotherapy, and a metastasis was
discovered. He was then referred for high-dose melphalan and autologous
BMT, an investigational treatment but with a true curative intent. The
psychotherapist suggested that although the parents had given their informed
consent (b) they were confused in this new treatment setting and they
needed time to adapt to it, and more discussion (c). Therefore, the pediatric
oncologist met them in order to provide further information, but the results
of the encounter were limited (d).
The following day, the nurses said that B's parents were actively seeking
to protect him against the doctors and nurses "attacks" as if they were
administering "harmful treatments" (e). The medical staff with the aid
of the psychotherapist tried to understand the reasons for such an attitude
(f). This exchange with the staff diminished their confusion and their
anger against the parents (g). The psychotherapist suggested that maybe
B's parents were not really convinced that the treatment was necessary
or could be efficient. Perhaps, they were afraid that B's hospitalization
could destroy the family's equilibrium?
The following day, to understand the conscious and unconscious causes
of their behavior, the psychotherapist had an interview with them and
B. His mother was reluctant and the therapist had to insist. She said
that she was worried about her second son, left with his grandparents.
She did not believe the treatment would be successful but did not know
why. She was afraid of the suffering B would have to endure and which
could destroy his love for her (h). The psychotherapist said that the
child's negativism toward the treatment had its place in the hospital,
but did not signify that he refused the treatment, nor that he would no
longer love his parents. B's father agreed, but was previously unwilling
to disagree with his wife due to her strong feelings and anxiety. They
were barely able to assume their parental responsibility of support for
the consented treatment, which they delegated almost entirely to the staff.
The psychotherapist suggested that B refused the treatment because of
the lack of parental support. They acknowledged that B's uncooperative
behavior could be linked to their doubts, that he was taking his attitude
toward the treatment from theirs, and that they were unsupportive (i).
These reasons were not sufficient to explain their behavior (j). The
next morning therefore, the psychotherapist decided to propose another
interview with the parents. B's mother said that the overriding objective
in her life was to make her children happy, and cancer had made this objective
impossible. She had brought up B freely and she was unwilling to accept
his suffering and his reproach. She explained that he was born after she
had divorced her first husband, a few years after he had been seriously
injured in a car accident. B's situation post surgery (mute, in an intensive-care
unit) reminded her of him. She was afraid that B would die, as he nearly
did. She added that she was unable to differentiate between what B felt
and what she felt (k). The psychotherapist explained to the staff what
he had understood of B's and his parent's behavior, in order to diminish
their confusion and their anger against them.
The next morning, the psychotherapist thought it was the right moment
to have an interview with B. The days before, his distress and capacity
to formulate his own questions had been masked by those of his parents
(l). B told him that he did not understand why he was undergoing treatment,
or why he was ill. He was wondering whether he was going to live or die,
whether his parents were confident or not. This illness was his first
ordeal. He was anxious because of his mother's ambivalence and fears.
B was wondering whether he would recover from his physical impairments,
and what his future life would be (m). The psychotherapist acknowledged
the pertinence of these questions, and added that B could now discuss
with his parents, whose disarray had greatly decreased, and his doctor.
After this encounter, no further problems arose regarding the course
of the treatment (n).
Discussion
a) In this case non-compliance was clearly expressed, but when it starts
in a very discrete manner its early signs can be directed at anyone in
the staff, and not only at doctors and nurses. Therefore, everybody should
be trained to notice the most subtle signs of lack of cooperation with
the therapeutic plan such as refusal of a minor element of the treatment,
failure to keep appointments, repeated requests for alternative treatment,
an aggressive, mistrusting or distant relationship with the caregivers.
It can be conscious or unconscious, expressed or acted by the child or
the parents. Early appreciation of these signs may lead to the resolution
of its causes before the escalation.
b) In France, informed consent only implies that the parents and the
child have received the information on the investigative protocol and
accepted the child's inclusion [14]. But their consent does not always
signify an authentic agreement with the treatment, even when parents or
patients have sufficiently understood the proposed treatment. When the
course of an illness and it's treatment is rapid and when the death of
the child is highly probable, the process of the parents' decision making
is very complex and difficult [20]. Staff can help them to anticipate
the course of the treatment and to describe the parts most difficult for
them, based on the parent's deepest convictions. ("Does the treatment
have sufficient merit to offset its negative effects on the child and
his/her family?") Also the ancillary medical professionals can help parents
to know how to ask for more pertinent information. This improves their
confidence in both the staff and themselves.
c) Often people feel strange in a new setting, with new doctors, and
major decisions should not be expected at the first encounter unless in
case of extreme necessity.
d) Care must be taken because information, even though precise, comprehensive,
understandable, can diminish or increase the patient's and the parents'
anxiety: because of their ambivalence, parents want to know and are afraid
of knowing.
e) Non-confidence can be expressed by attitudes, not only by words.
f) Parents often want to play a role in the medical care of the child,
to assume their parental role, to protect the child from an eventual nursing
or medical mistake. Some do it effectively, showing support for the caregivers,
while others are more afraid of medicine and doctors than of illness,
become uncooperative, or embark on childish rivalry with the staff [21].
g) A lack of mutual understanding and confidence between the parents
and the staff may increase the risk of non-compliance. The psycho-oncologist
can help the child, the parents and the staff to better understand and
express their emotions, fears and to formulate their questions, demands.
Then he/she can act as a go-between ensuring interaction between them
without unnecessarily disrupting the family's privacy.
h) Some parents refuse the treatment because they feel the child's sufferings
and fears in their own body and mind, or because they think, consciously
or not, that the price to be paid for it will be too high. They fear the
child's sufferings will be too severe, they will not be able to endure
their child's reproach or the family will split up.
i) The fear of losing one's parental role and the child's confidence
and love may explain non-compliance. When parents doubt their value and
their competence, they may avoid coming to the hospital (shift their unbearable
responsibility onto their own parents or the staff). The guilt such behavior
arouses in them can develop into hostility or into rivalry. If the child
realizes that his/her parents have abdicated or are excessively disturbed,
he/she may in turn feel guilty and thus refuse the treatment to put an
end to this confusion. Caregivers should, therefore, help parent to develop
confidence in themselves.
j) The caregivers should not be satisfied with understanding a first
cause, but should continue the dialogue and the reflection: human behavior
often results from a long and complex chain of events and thoughts. They
should also be aware of their own attitude towards an aggressive and risky
treatment: do they really believe in its value, relevance, efficiency?
Do they accept the parents' and the child's doubts and criticism without
locking themselves in the certainty of being right?
k) The parents do not always know the reasons for their behavior, which
are conscious or unconscious, related to the present time or to a remote
past, to reality or to fantasies, to their ideals, to unresolved grief.
The child's current situation can reactivate older, painful ones, the
features of which sometimes impose behavior models. The psychotherapist
can help parents to become conscious of links to the past, to soothe the
old sufferings so that they can cope with the present, and to separate
their own emotions from those of the child's.
l) Children are guided by their parents' emotions, behavior, and reactions.
They expect them to stand between themselves and the caregivers. If the
parents are only on the staff's side, explaining to the children that
they have no choice, that they must be courageous and sensible, they feel
betrayed and terribly lonely. If parents are not able to separate themselves
from the situation they are experiencing, and if they feel and express
the same emotions and fears as the child, he/she will not be able to count
on them and will feel alone and helpless.
m) To accept the treatment, the children and their parents must understand
the reasons for and the logic behind such therapy. They must also be given
a realistic and honest assessment of what the future holds for them.
n) We can suppose that the problem at the core
of their non-compliance had been sufficiently resolved: the mother's relation
to her first husband's accident, and her ideals in life. The main objective
here was to help the parents assume their parental role. Psychotherapeutic
interviews with B's parents helped them to become aware of and to express
the violent and painful elements of their life that had been reawakened
by his illness. The discussions with B, his parents, his caregivers unveiled
the components of the problem. Appropriate advice and support helped all
the players gain insight into the way they could cope with the situation
and diminished misunderstanding between them. We should bear in mind the
two objectives of the treatment: to optimally treat the child and to ensure
that this experience will not leave psychological sequels which will impede
their existential dynamics and their sense of happiness. When we try to
solve a non-compliance problem, we must think of the short as well as
of the long term. If we succeed in solving the problem simply by stating
we are unable to treat the child, or by appealing to a judge to impose
the treatment or by imposing our convictions without trying to understand
the parents' point of view, the child may lose his/her self-esteem and
the parents may become discredited: a bitter victory, and the likelihood
of negative sequels.
CONCLUSION
This case of non-compliance in a Department of Pediatric Oncology illustrates
major causes of these situations and a method of solving them. It is important
to pay attention to early signs of poor cooperation with the treatment
plan, even concerning minor issues, before the escalation toward major
clinical, ethical and legal questions. Their various causes are to be
sought not only in the current medical situation but in the relation between
the parents, the child and the staff, in the family history and its present
dynamics, in the child's own thoughts, sometimes far from what we could
reasonably imagine. A child's non-compliance can be an expression of his/her
parents' or grandparents' resistance. We have to be attentive to any explanation
the child or his/her parents may give and understand their logic, to help
them rather than force compliance with a regimen that they do not approve.
The latter causes distressing psychological sequels. The early signs of
non-compliance may be expressed in a variety of ways and situations, and
the pediatric oncologist may find it difficult to perceive the existence
of unconscious and irrational thoughts. The relationship between pediatricians,
nurses and the psycho-oncologist must therefore be as close as possible.
Comments
B. Sourkes. A system view is necessary to understand non-compliance,
which is not only a child's intrapsychic problem. There is always a multi-determined
interaction between child, parents and the medical care team in addition
to individual psychological factors. At the core of this case is the mother's
traumatic loss history, the father who could not "override" her anxiety,
and the child who takes his cues from the parents. The staff had to "impose"
painful procedures without support from the parents. This type of family
situation, coupled with a most difficult medical situation is high risk
for everyone involved, including staff. Clinical intervention must recognize
non-compliance as the end of a complex chain of conscious and unconscious
factors. Clues to treatment refusal emerge in an assessment of the child
and family dynamics, including the family loss and trauma history.
A. Ablin. This young boy was not hostile to the treatment, but
instead was confused by his parents lack of certainty of the appropriateness
of the very plan that they had previously approved. They signed a consent
for a physician generated aggressive treatment plan whose goal "cure no
matter what the cost", was not one with which the parents, especially
the mother, had complete agreement. They were not supportive, because
their goal for treatment was either "cure if the cost was modest" or,
perhaps even "comfort care until death". The child was aware of the differences
between what the staff was trying to do and what his mother wished and
he, therefore, was non-compliant with the staff. Not until the mother,
helped by the psychiatrist, accepted the same goal for treatment that
the staff was pursuing was the child able to accept it.
Goal setting discussions are often avoided by all parties when cure
is unlikely because they are so time consuming and the possibilities they
raise are so painful. Discussions of the possibility or probability of
death are avoided and it becomes easier to talk of cure options even when
they are almost impossible and require great discomforts. Sometime for
all of us, comfort care and death may be the best therapeutic option.
The mother obviously had this in mind when she expressed her strong ambivalence
about the transplantation. She was helped to understand the reasons she
was having difficulties with the staff's goal, was able to accept them
and communicate them to her child, who then became compliant. It is important
that all parties adopt the same treatment goals before the start of therapy,
an important part of the informed consent process.
Remerciements. D.O. thanks Ms. L. Saint-Ange for editing the manuscript.
Article reçu le 12 novembre 2001, accepté le 27 février
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