Pediatric Annals

Treatment Refusal, Noncompliance, and the Pediatrician's Responsibilities

John D Lantos, MD

Abstract

In a short story, William Carlos Williams described his feelings about a child suspected of having diphtheria who would not let him examine her throat. When she resisted his exam, he became angry and prepared to pry her mouth open with a spoon. Before doing so, however, he told her parents that it was entirely up to them whether or not he should proceed. "I would not insist on a throat examination so long as they would take the responsibility," he wrote.' In 1935, pediatricians could defer to parental wishes in such cases.

Pediatricians' emotional responses to children or parents who resist medical recommendations have not changed since Williams' day, but societal expectations and consequently the legal and moral obligations of physicians have changed. These changes cause ethical dilemmas that are not rare in everyday pediatric practice. How should we treat the asthmatic who repeatedly presents in respiratory failure with a theophylline level below three I Or the severely retarded child who is not gaining weight hut whose parents do not want a gastrostomy? Or the teen who is failing in school and may be using drugs but whose parents refuse to visit a psychologist or psychiatrist? How do we act as a child's advocate when the child's parents disagree with or do not follow our recommendations?

Situations in which parents refuse treatment, especially outpatient treatment, have not been well studied. A Medline search of "treatment refusal and parent" turns up four references, three referring to adolescents with cancer or anorexia and one about anxiety in a dental clinic. "Refusal of treatment" accesses the geriatrics literature about withdrawal of life- sustaining therapy. Pediatricians need a conceptual approach to the problem of a parent who either refuses treatment or is noncompliant in a way that endangers the life of the child.

REFUSAL AND NONCOMPLIANCE

Noncompliance and outright refusal are difficult to distinguish. Failure to comply with outpatient treatments, or with treatments administered by patients or families, is usually labeled noncompliance. Failure to consent to inpatient treatment or treatment administered by health care personnel is usually labeled refusal. Hence, in common usage, patients are noncompliant with asthma or seizure medication, but refuse immunizations or cancer chemotherapy.

Although the differences between noncompliance and refusal are complex, the pediatricians' responsibility and options in each case are similar. Pediatricians recommend a treatment because they feel it is necessary. If parents do not follow the recommendations, it matters little why. From the child's perspective the end result is identical.

Incidence of Treatment Refusal or Noncompliance

Data on refusal to comply with therapy usually focus on a single disease or therapy. For example, 21% of adolescents were reported noncompliant with anticonvulsant therapy2; 28% of asthmatics were noncompliant with recommended theophylline treatment3; and 34% of adolescents were noncompliant with oral contraceptive therapy after three months.4 Compliance of pediatric cancer patients appears to decrease over the course of therapy, with 81% reporting complete compliance at 2 weeks, but only 60% to 65% at 20 weeks and 50 weeks.5 Seventeen percent of parents refuse immunizations,6 and an initial 43% noncompliance rate among patients with renal transplants was dropped to 19% after intensive counseling. 7 In a study from India, the parents of 10.2% of children seen in a pediatric outpatient clinic for whom admission was recommended refused admission, and another 7.2% left the hospital against medical advice after they were admitted.8 Although it is difficult to generalize from these studies, the data suggest that 10% to 40% of pediatric patients receive suboptimal therapy as a result of noncompliance with recommended outpatient treatment protocols.

The effects of noncompliance are difficult to…

In a short story, William Carlos Williams described his feelings about a child suspected of having diphtheria who would not let him examine her throat. When she resisted his exam, he became angry and prepared to pry her mouth open with a spoon. Before doing so, however, he told her parents that it was entirely up to them whether or not he should proceed. "I would not insist on a throat examination so long as they would take the responsibility," he wrote.' In 1935, pediatricians could defer to parental wishes in such cases.

Pediatricians' emotional responses to children or parents who resist medical recommendations have not changed since Williams' day, but societal expectations and consequently the legal and moral obligations of physicians have changed. These changes cause ethical dilemmas that are not rare in everyday pediatric practice. How should we treat the asthmatic who repeatedly presents in respiratory failure with a theophylline level below three I Or the severely retarded child who is not gaining weight hut whose parents do not want a gastrostomy? Or the teen who is failing in school and may be using drugs but whose parents refuse to visit a psychologist or psychiatrist? How do we act as a child's advocate when the child's parents disagree with or do not follow our recommendations?

Situations in which parents refuse treatment, especially outpatient treatment, have not been well studied. A Medline search of "treatment refusal and parent" turns up four references, three referring to adolescents with cancer or anorexia and one about anxiety in a dental clinic. "Refusal of treatment" accesses the geriatrics literature about withdrawal of life- sustaining therapy. Pediatricians need a conceptual approach to the problem of a parent who either refuses treatment or is noncompliant in a way that endangers the life of the child.

REFUSAL AND NONCOMPLIANCE

Noncompliance and outright refusal are difficult to distinguish. Failure to comply with outpatient treatments, or with treatments administered by patients or families, is usually labeled noncompliance. Failure to consent to inpatient treatment or treatment administered by health care personnel is usually labeled refusal. Hence, in common usage, patients are noncompliant with asthma or seizure medication, but refuse immunizations or cancer chemotherapy.

Although the differences between noncompliance and refusal are complex, the pediatricians' responsibility and options in each case are similar. Pediatricians recommend a treatment because they feel it is necessary. If parents do not follow the recommendations, it matters little why. From the child's perspective the end result is identical.

Incidence of Treatment Refusal or Noncompliance

Data on refusal to comply with therapy usually focus on a single disease or therapy. For example, 21% of adolescents were reported noncompliant with anticonvulsant therapy2; 28% of asthmatics were noncompliant with recommended theophylline treatment3; and 34% of adolescents were noncompliant with oral contraceptive therapy after three months.4 Compliance of pediatric cancer patients appears to decrease over the course of therapy, with 81% reporting complete compliance at 2 weeks, but only 60% to 65% at 20 weeks and 50 weeks.5 Seventeen percent of parents refuse immunizations,6 and an initial 43% noncompliance rate among patients with renal transplants was dropped to 19% after intensive counseling. 7 In a study from India, the parents of 10.2% of children seen in a pediatric outpatient clinic for whom admission was recommended refused admission, and another 7.2% left the hospital against medical advice after they were admitted.8 Although it is difficult to generalize from these studies, the data suggest that 10% to 40% of pediatric patients receive suboptimal therapy as a result of noncompliance with recommended outpatient treatment protocols.

The effects of noncompliance are difficult to evaluate; most studies of noncompliance do not report whether specific adverse outcomes resulted. In one study of asthma patients, both compliant and noncompliant patients showed significant improvement in their pulmonary function tests. 3 Nevertheless, many surveys of mortality among asthmatics show that noncompliance, failure to use medications properly, or lack of access to appropriate medical care is a significant factor in many asthma-related deaths. 9,10

Reasons for Treatment Refusal or Noncompliance

Many factors are associated with patient or parental refusal to comply with medical recommendations. Adolescents,5,7 especially younger adolescents,4 are less compliant than young children. In some studies, females are less compliant than males,7*" although most studies find no sex difference. Children in small families are more likely to be compliant.5 Family instability7 and lower socioeconomic class4,8 may be associated with noncompliance. The effect of parental understanding of the need for therapy is difficult to evaluate.

Cases of overt treatment refusal, as opposed to noncompliance, are usually reported anecdotally and have not been studied systematically. Parents may refuse treatment for their children for many reasons. One paper reported 13 patients who refused cancer chemotherapy with a brief synopsis of the reasons for refusal.12 These included religious faith (two cases), belief in the efficacy of Laetrile™ (one case), outright parental neglect (two cases), a case where parents who were Jehovah's Witnesses refused bkxid transfusions (one case), and one case where parents thought treatment was hopeless. These cases are similar to cases that have led to legal battles in the past, · 3 and so may be representative of the spectrum of reasons for treatment refusal.

Parents have refused to consent to life-saving treatment for newborns with congenital anomalies because of concern about the quality of life their child might have if treatment was successful. These cases raise unique dilemmas that have been discussed elsewhere.14,15 They are relevant to this discussion only in that they illustrate the conflicts that can occur between pure child advocacy and concern for the moral status of families.

The spectrum of parental treatment refusal runs from simple noncompliance as a result of forgetfulness or carelessness to malicious neglect or malevolence. Between these extremes lie a range of other reasons for refusing treatment. Parents (or the older child) may not understand the need for treatment; they may not be able to afford treatment or may have another tangible obstacle preventing them from obtaining necessary treatment; or they may not believe that treatment is necessary. This spectrum may be summarized in three categories: parents who are neglectful, parents who disagree with physicians (based on religious beliefs or other values), and parents who want to provide treatment but are unable to do so.

THE PEDIATRICIAN'S RESPONSIBILITY

Pediatricians may respond to parental refusal or noncompliance in a number of ways. They may adjust treatment protocols, attempt educational interventions to improve parental compliance, or report parents to child protection agencies. The appropriate response to parental noncompliance or treatment refusal depends on the etiology of the refusal and other factors, including the relative indications and contraindications for treatment, the difference in likely outcomes with and without treatment, and whether the patient is an inpatient or an outpatient. The appropriate response must also take into account prevailing legal and ethical standards for parental medical decision making.

Legal Standards

Certain factors must be present before the courts will intervene and force treatment. Courts will order treatment over parental objections for conditions that are immediately life-threatening. Hence, blood transfusions for a Jehovah's Witness child, 16 chemotherapy for leukemia,17 and eye enucleation for a retinoblastoma'8 have been ordered. Courts will usually order treatment for conditions that will result in significant morbidity without treatment, such as ventriculoperitoneal shunting for hydrocephalus19 and tonsillectomy to prevent hearing loss.20

When the potential harm to the child is not imminent the courts are less predictable. They have allowed the parents of an adolescent to refuse an operation for scoliosis surgery based on their religious beliefs (with which the patient concurred).21 Courts have also upheld parents' rights to refuse to give their child seizure medication22 and to refuse corrective surgery for a child with Down's syndrome and a ventricular septal defect.23

Although it is difficult to predict how the courts will rule in any individual case, two recent articles describe patterns in court decisions.24,25 The following factors are crucial to decisions to order medical treatment: 1) the severity of outcome without treatment; 2) the probable effect of any delay in treatment; 3) probability of success of the intervention; 4) contraindications to treatment; 5) quality of life; 6) for older children, the child's attitude toward treatment; and 7) whether there is conflicting advice from doctors.

Ethical Standards

Each of the legal considerations factors is a matter of degree, not kind. To decide whether a case warrants court intervention, courts rely heavily on physician's judgments about whether treatment should be considered mandatory or optional. Holder writes, "It is clear that courts invariably rule in favor of a physician who claims that a parent is denying standard medical care to a child."25 This judicial tendency makes the decision to seek a court order tantamount to obtaining one. Given this mandate, the temptation to hold parents accountable to the physician's values may be very strong.

Pediatricians must, however, balance their own assessment of the child's best interest against the parents' right to make decisions for their children about medical care and other matters.

In circumstances in which medical care is unquestionably beneficial for the child and the parents are refusing medical care for nonideologica I reasons, the state should compel treatment even if it means removing the children from parental custody. Physicians should actively participate in the formulation of acceptable, publicly ratified standards of parental responsibility in such cases. Open debate can shift societal standards for the accountability of parental decisions, as has happened over the last two decades for infants with Down's syndrome and duodenal atresia or myelomeningocele.

In many circumstances, however, especially those involving treatment of debilitating chronic diseases, therapy may be palliative but not curative; it may need to be continued for the child's lifetime; the benefits of treatment may be difficult to measure; the burdens of treatment may be high; and the demands on parents may be unprecedented.26 In such circumstances, decisions about whether to provide or withhold care are intensely personal decisions, and treatment refusal has different meanings than it does in more medically straightforward situations.

Should considerations of the burden of therapy to a child's parents or other family members affect the physician's responses to treatment refusal or noncompliance? There seems to be no other alternative.

Children do not grow up in a vacuum. Families cannot blithely be replaced because they do not meet our standards. Children who must be removed from their families face an uncertain fate in the foster care system.27 When these children have complex medical needs, adequate foster care is especially difficult to arrange. 28

In addition to the negative effects on children, reliance on court ordered interventions has implications for parents and physicians. If parents are not permitted to have any opinions about medical treatment that differ from the physician's opinions, or if any deviation from the recommended therapy is treated as child neglect, parents may view pediatricians as antagonists rather than as allies.29 If health care is treated as a state-enforced obligation, physicians become law enforcement officials. This inevitably creates dual loyalties and conflicts of interest. Physicians may feel compelled to tell parents that anything they say may be used against them in court. Unless the blunt instrument of criminal law is a last resort, used only for cases in which the medical issues are clear and all other solutions have failed, attempts to prevent child abuse through medical neglect may result in the victimization of parents. 30

Finally, in circumstances where parents want to provide appropriate care but for emotional, economic, or other reasons are unable to do so, the pediatrician has a responsibility to assist the parents in obtaining necessary help. This may require social work referral, psychologic or psychiatric counseling, or intervention with appropriate state agencies.

CONCLUSION

Many children receive inadequate medical care as a result of parental noncompliance or treatment refusal. As child advocates, pediatricians have a responsibility to the child that may override their loyalty to parents. In cases where failure to treat is immediately lifethreatening pediatricians should seek court orders for treatment.

Cases of treatment refusal, disagreements between physicians and families about treatment, or noncompliance occur across a broad spectrum of clinical situations. It is an oversimplification if all these situations are classified as child neglect, but the criteria by which boundaries should be drawn are elusive. Pediatricians' perceived moral obligations as child advocates may lead them to use legal sanctions as a way of imposing their own values on families.

When substandard care for chronic illnesses leads to a situation in which a child has an increased likelihood of morbidity or mortality, without an immediate life-threatening problem, the physician must seek the reasons for noncompliance. If parents are neglecting their child, appropriate legal action should be taken. If parents lack the ability or means to obtain needed services, pediatricians may need to help parents gain access to the health care system. If parents sincerely disagree about the desirability of treatment, physicians should rely on persuasion rather than legal sanctions to encourage compliance. Treatment refusal and noncompliance should be seen less as legal problems and more as clinical problems that test our capacity for compassion and understanding as well as our ability to communicate and persuade.

REFERENCES

1. Williams WC: The Daclur Stories. New York. New Directions Publishing Co. 1984. pp 56-60.

2. Friedman IM. Lin IF. King DR: Compliance with anticonvulsant therapy by epileptic youth, i Adolesc HVuJtA Core 1986; 7:12-17.

3. Weinstein AG. Cuskcy W: Theophylline compliance in asthmatic children. Ann Allergy 1985; 54:19-24.

4. Emans Sj. Grace E. Woods ER, et al: Adoiescenrs' compliance with the use of oral contraceptives. JAMA 1987: 257:3*77-3381.

5. Tebbi ClC. Cumminjäs M, Sevon MA: Compliance ot pediatric and adolescent cancer patients. Cancer 1986; 58:1179-1184.

6. Guest M. Horn J. Archer LN): Why some parents refuse pertussis immunization. Practitioner 1986; 230:210.

7. Beck DE. Fennell RS. Yost RL. er al: Evaluation of an educational program on compliance with medication regimens in pediatric patienrs with renal transplants. / ftutor 1980: 96:1094-1097.

8. Ahmad SH. Sharma SK, SiJdiuui AQ, er al: Parental refusal of medical care. Indian) ftdiair 1985; 22:835-839.

9. Benctar SR: Fatal asthma. N Enjrl J Med 1986; 314:42 3-429.

10. Sly RM: Effects of treatment on mortality from asthma. Ann Atierjr« 1986; 56:207-212.

11. Cordis L, Marlon» in M, Lilenfeld A: Why patienrs don't follow medical advice: A study of children on long-term antistreptococcal prophylaxis. J Pediatr 1969; 75:957-968.

12. Lansky SB. Vats T. Caims NU: Refusal of treatment. A new dilemma for «ncokigists. Am J ftdiarr Hematol Oncol 1979; 1:277-282.

13. Swartz M: The patient who refuses medical treatment: A dilemma for hospitals and physicians. AmJ Law Med 1986: 12(2):183-194.

14. Berseth CL: A neonatologi*! looks at the Baby Doe nife: Ethical decisions by edict. ñdmtia 1983: 72:428-429.

15. Lorber J: Results of treatment of myelomeningocele. Dei· Med Chad Neurol 1971; 13:279-303.

16. Jejovah's Witnesses of Washington KingC<ntntyH<Bpital. 278 F Supp 488, u/fd 390US 598 (1968 1.

17. Ciuhxlx of a Minor. Mass 379 NE 2d 1053. 393 NE 2d 836 (1978).

18. In re Vusfco. 238 AD 128, 130 NYS 552 (NY App Div 1933).

19. In re Jensen. 54 Or App I, 633 P2d 1302 (Or Ct App 1981).

20. In re Knnutiro. 199 NW 2d 147 (Iowa 1972).

21. In re Green. 448 PA 338. 292 A2d 387 (1982).

22. in re DLE. 200 G>lo 244. 644 P2d 873. 1980.

23. In re Philip B. 92 CaI App 3d 796. CaI Rep 48. cert den 445 US 499 (1980).

24. Brt»s D: Medical neglect. Child Abuse Negl 1982: 6:375-381.

25. Holder A: Parents, courts, and refusal of treatment. ; ffcdiutr 1983: 103:515-521.

26. Kohrman AF. Lantos JD: Ethical aspects of pediatric home care, in Kaufman], BtKk R (cds): Issues in ftiiiurru; Home Care. New York. John Wiley & Sons. 1988.

27. Shor EL: The foster care system and the health status of foster children. Pediatrics 1982; 69.521-528.

28. Jaudes PK. Diamond LJ: The handicapped child and child abuse. Child Abuse Negl 1985: 9:341-347.

29. Stinson R. Stinson P: The L·mg Ovini; uf Baby Andreu1. Boston. Atlantic Monthly, 1983.

30. Silverman FN: Child abuse: The conflict of underdetcction and overreportine. !Winnies 1987; 80:441-443.

10.3928/0090-4481-19890401-08

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