by SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, 2002
This document is provided for the pediatric oncology community as a useful set of guidelines. It is in the child’s best interest for the health care team members to do as much as possible to detect these problems and try to prevent them from developing. For the purpose of this paper we define refusal as a decision to avoid recommended elective treatment, noncompliance as failure to cooperate with medical recommendations, and abandonment as termination of a relationship with physicians and treatment.
This, the ninth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important and especially controversial topic: noncompliance, refusal, and abandonment of treatment in children and adolescents with cancer. This document is provided for the pediatric oncology community as a useful set of guidelines. It is in the child’s best interest for the health care team members to do as much as possible to detect these problems and try to prevent them from developing. For the purpose of this paper we define refusal as a decision to avoid recommended elective treatment, noncompliance as failure to cooperate with medical recommendations, and abandonment as termination of a relationship with physicians and treatment. These failures arise basically from a lack of mutual understanding and are responsible for many preventable deaths in children with cancer. The reasons for disagreement and miscommunications can arise from predominantly personal and psychological reasons or from financial, cultural, or institutional causes, as listed below. Improved mutual understanding would increase the number of children able to profit from optimal care.
This set of guidelines will deal with the following: (A) the causes of these three difficulties; (B) their prevention; and (C) judicial intervention when all else fails. The three problems, i. e., refusal, noncompliance, and abandonment are separate and distinct, but we here shall gather all three together under each rubric in our discussion.
When the family as a unit is discussed, it is to be understood that both the age and the developmental level of the children and adolescents with cancer are extremely important variables. They strongly impact both the depth of the family’s and the health care team’s communication with them and the level of their participation in decision-making processes regarding medical treatment and compliance. Adolescents tend to be less compliant than younger children, and need to be involved more fully in the process of informed consent regarding their own treatment. In order to obtain their cooperation, both the children and the adolescents need to be treated with as full and individualized a level of communication as their age and development allow. These guidelines should be applied taking these factors into account.
THE CAUSES OF REFUSAL, NONCOMPLIANCE, AND ABANDONMENT OF TREATMENT
Reasons given in the literature for refusal, noncompliance, and abandonment of treatment include the patient’s physical discomfort, the parents’ fear of losing their parental role, misunderstanding and uncertainty about the merits of medication, poor communication regarding the diagnosis and treatment regimen, and inadequate information on illness in general and on the child’s disease and secondary effects of the disease and its treatment in particular. There may be a real fear of amputations or other disfiguring treatments, frustration with the length of treatments, fear of side effects, and poor understanding of the seriousness of the illness. This lack of awareness includes failure to grasp that there can be no compromise with curative therapies, particularly in situations that require aggressive treatments that might seem to be excessive and lead to unjustifiable suffering.
Psychological distress of the parents, eventually leading to severe depression or other psychological problems and disturbances, may also be a cause of noncompliance, requiring professional intervention and support. Conflicts between older children/adolescents and their parents may become intensified in the presence of disagreements on treatment.
Additional causes are societal prejudices, for example ostracism of amputees or the disfigured or religious beliefs that may view pain and suffering as acceptable and even inevitable if believed to the will of a Supreme Being. These cultural-religious differences may negate any trusting relationship with the treating physicians, indeed may lead the parents or the patient to refuse treatment altogether, or lead them to resort to alternative therapies or faith healers. For many families noncompliance can be traced to pre-existing and continuing family conflicts. Other families may not have faith in the real possibility of cure, or in conventional medical treatment. The increased availability of alternative medicine renders such families more vulnerable to abandonment of scientifically sound and well-tested therapies.
Other reasons for refusal, noncompliance or abandonment of treatment revolve around lack of resources, both in the family’s finances and in the medical facilities of the local geographic region. Availability of social support services is another potent factor, especially in families beset by multiple pressing needs such as other children with illnesses which to the family are just as pressing as leukemia or cancer. Conflicting needs that cannot be met easily lead to fatalism: the parents may feel that death is inevitable, so why go through the futility and burden of expensive and painful treatments.
How does one address these sources of refusal, noncompliance, and abandonment of treatment? What can a health care team do to offset them?
Insufficient and inadequate doctor/patient/family dialogue, relationship, trust, and mutual information is one of the most important causes of noncompliance.
The first and foremost action to be taken by health care team members is an open, honest, and thorough level of communication with all patients, especially adolescents, and their families. Their inclusion in the decision-making regarding treatment helps set an atmosphere of compliance. “We” (not “they”) have decided to do thus, and so on. The team should establish formal and continuous modes of contact by telephone, e-mail or by home visits, and help the family to make social arrangements through local and regional facilities. The family’s local health care providers must be brought into the team, and need to be informed of all relevant details.
The psychosocial members of the health care team can play a crucial role. When mutilation is envisaged or disfigurement is to be expected, visits by healthy survivors with the same pathology and treatments are extremely helpful. The patient can see that a happy and useful life despite some degree of disfigurement is possible. This can raise hope, expectations, and thus compliance.
Information provided to parents and patients is extremely important, but details regarding any particular child should be known by all members of the health care team. This is to avoid giving differing and confusing information to the parents. Only one person should be designated as the responsible physician, charged with informing the parents and patients about the disease, problems that may arise, and planned treatment. Joint meetings of parents and members of the health care team, when simple explanations of protocols can be discussed, are also important for that purpose.
Second, factors predictive of a tendency toward noncompliance should be identified even at the time of diagnosis. Examples of such indicators are: signs of family or parental dysfunction, non-comprehension, low socioeconomic status, failure to attend initial information-giving sessions and other appointments, or to follow simple instructions. The earlier one intervenes, the more effective the intervention, most particularly in the area of abandonment of treatment. The health care team members (physicians, nurses, social workers, and psychologists) can develop their own set of warning signs and use them to mobilize additional support for families likely to be noncompliant. The goal is to develop trust in the health care team, involving the whole family from the start.
A third approach to prevention has to do with those families who are driven to noncompliance for reasons more to do with their personal finances than with their misunderstanding of the disease or treatment process.
The health care team can help prevent noncompliance in such families by: providing a place near the hospital where families can stay if their child will be needing prolonged treatment, finding someone to help with the needs of the other family members (babysitting, cooking meals), giving financial help for transportation for siblings and both parents, keeping the hours for medical visits and appointments flexible for the families whose needs do not fit into regular hours, and insisting on and implementing continuous communication between all family members and the entire health care team (medical and nursing as well as psychosocial). Parent support groups can perform an invaluable role here.
A fourth form of prevention is needed for those who want an otherwise medically valid treatment which the physician has already ruled out as not being appropriate for that particular patient. Computer technologies have given parents information about “breakthrough” medical procedures that they feel may be better for their offspring. Most but not all parents who come armed with the latest knowledge are very interested in the best care and are willing to listen to a reasoned exposition. Failing to take seriously the parents’ desires and new-found knowledge, or failing to take the time to communicate thoroughly with such families, decreases trust and can lead to noncompliance. Thus, a serious and in-depth communication and explanation is the most important component in the prevention of noncompliance under these circumstances. The parents must leave such a discussion convinced that the treatment their child is already receiving is the most beneficial. Parents and patients should be allowed and even encouraged to seek a second opinion whenever they have doubts about the appropriateness of the therapy being offered.
A fifth way to prevent noncompliance is to remain non-patronizing and open to discussion when alternative medical treatments are proposed by parents or patients. The internet has led to an increase in false as well as factual information. Families are exposed to an increasing number of promises of quick and easy cures on television, web sites, and newspapers. Careful and extended communication is needed to increase the parents’ real understanding, and to prevent their abandoning standard management of proven value to seek useless, usually expensive and at times harmful alternative treatments. When the physician cannot dissuade parents, judicial intervention may be called for.
Before doing so, however, careful attention should be paid to the parents’ expressed religious or cultural value system. Often an alternative treatment does not significantly interfere with the prescribed treatment and is in itself medically and financially harmless (e.g., the use of religious faith healers not seeking to exploit the parents’ anguish). Physicians should in such cases encourage the parents to supplement conventional therapies with their own cultural and/or religious approaches. The physician can thereby ward off confrontations that easily lead to noncompliance. Not only is there usually no harm in allowing them to remain true to their cultural and religiously-based value systems, but there is also a tangible gain in trust and confidence to be obtained.
Finally, the medical health care team should assure the parents and patients that, no matter what else happens, the medical staff will take care of the child until the end. At no time in the dialogue with the patient and family should the wording “nothing can be done” be used to connote abandonment of the patient by the physician. This is not only because hope should be the last thing to die, but also because, even during the palliative phase when cure is no longer possible, physical and emotional support remain as important as ever.
JUDICIAL INTERVENTION WHEN ALL ELSE FAILS
In what should be a rare occurrence, when communication breaks down and it becomes a matter of life or death for the child, the medical team may need to pursue judicial intervention. When parents adamantly refuse treatment or completely replace the medically sound measures with ineffectual alternative medicine, it may be necessary to resort to legal proceedings to over-ride the parents’ at once, and thus insure that the best interests of the child are served.
It is important in such an event to discuss the reasons for this decision with the child at his developmental level of understanding.
It is also important to help the child to retain trust in the parents, by assuring all the family members that the judicial intervention is specific and limited only to the medical treatment, and not to the family’s ongoing relationship and parenting role.
Unfortunately, even judicial intervention does not guarantee that all parents will cooperate -they may abscord – or that the mandated medical treatment will take place in time for optimal care.
Refusal, noncompliance, and abandonment of oncologic and haematologic medical treatment remain critical issues. Health care team members must be trained to recognize even at the time of diagnosis those predictive psycho-social-economic patterns that predispose to these problems so that preventive measures can be instituted.
The earlier the intervention, the better the chance of preventing or reversing them.
Tebbi CK, Cummings KM, Zevon MA, et al. Compliance of pediatric and adolescent cancer patients. Cancer 1986;58:1179±1184.
Festa R, Tamaroff MH, Chasalow F, et al. Therapeutic adherence to oral medication regimens by adolescents with cancer: 1. Laboratory assessment. J Pediatr 1992;120:807±811.
Bearison DJ. Medication compliance in pediatric oncology. In D. J. Bearison & R. K. Mulhern, editors, Pediatric psycho-oncology. New York: Oxford, 1994. p 84±98.
Lansky SL, Smith S, Cairns N, et al. Psychological correlates of compliance. Am J Pediatr Hematol/Oncol 1983;5:87±92.
Manne SL, Jacobsen PB, Garfinkle K. et al. Treatment adherence difficulties among children with cancer: The role of parenting style. J Pediatr Psychol 1993;18:47±62.
Tebbi C, Richards M, Cummings K, et al. The role of parent-adolescent concordance in compliance with cancer chemotherapy. Adolescence 1988;23:599±611.