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A child and parent illustrating non-compliance with treatment: understanding non-compliance with treatment


Bulletin du Cancer. Volume 89, Number 6, 643-7, Juin 2002, Articles originaux


Résumé   Summary  

Author(s) : Daniel Oppenheim, Olivier Hartmann, Arthur Ablin, Barbara Sourkes, Dept. of Pediatrics, and Unit of Psycho-Oncology, Institut Gustave-Roussy, 94805 Villejuif, France..

Summary : Background. In children and adolescents non-compliance with treatment is a major concern. To shed light on its mechanisms, we present a family demonstrating non-compliance. Procedure. B, a 10 year-old boy, treated for medulloblastoma, refused high-dose chemotherapy and Autologous Bone Marrow Transplantation. Six psychotherapeutic interviews with B, his parents and staff resolved the causative issues. Results. B's behavior expressed his parents' ambivalence, despite their informed consent. Their reasons were conscious and unconscious, rational and irrational, linked to both the past and present experiences. The mother was convinced that he would die. The discussions helped both parents to assume their parental role, B perceived their ability to truly accept the treatment and support him. Conclusions. Non-compliance should not be viewed as a child's or parents' intrapsychic problem, but as the result of multi-determined interaction between the child, the parents, the staff interacting with present and past events. When the child's death is a possibility, the parents' ambivalence confuses their understanding and acceptation of the therapy. The development of confidence between the staff, the child and parents and clear agreement about the goals of therapy is necessary to avoid the occurrence of and escalation of non-compliance, which raises difficult clinical, legal and ethical questions.

Keywords : non-compliance, psycho-social issues, child-parent-staff interaction, clinical case, ethics.

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 2002.

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