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Do Parents Have the Right to Refuse Standard Treatment for Their Child With Favorable-Prognosis Cancer? Ethical and Legal Concerns

Jeffrey D. Hord, Waqas Rehman, Patricia Hannon, Lisa Anderson-Shaw, Mary Lou Schmidt

From the Children's Hospital Medical Center of Akron, Akron, OH; and the University of Illinois at Chicago College of Medicine, Chicago, IL

Address reprint requests to Jeffrey D. Hord, MD, Children's Hospital Medical Center of Akron, Pediatric Hematology/Oncology, One Perkins Square, Akron, OH 44308; e-mail: jhord{at}chmca.org

INTRODUCTION

A 7-year-old boy presenting with bone pain and fever was found to have standard-risk pre–B-cell precursor acute lymphoblastic leukemia (ALL). Parental written consent was obtained to begin a standard 3.5-year chemotherapy treatment regimen with an estimated 85% chance of long-term survival. Induction chemotherapy was successful in producing remission; however, after 3 months of chemotherapy, the parents opposed continuation of the standard treatment, citing concerns that chemotherapy would damage their son's immune system and cause other long-term problems.^1,2

As a replacement for standard treatment, the parents elected to pursue alternative holistic approaches including nutritional supplements, dietary changes, and stress reduction techniques. The parents transferred the care of their child to a licensed family medicine physician who was board certified in holistic medicine. The new physician agreed to monitor the patient's blood counts to monitor the leukemia, and if the patient's blood counts suggested relapse, he would refer him back to a pediatric oncologist.^1-3

The Department of Job and Family Services in the patient's county of residence was notified, and a hearing was held in the county Court of Common Pleas (family court division) to determine whether the parents were guilty of neglect and whether standard therapy should be mandated. The pediatric oncologist involved with this case testified that he believed that stopping standard therapy at this point would almost certainly result in a return of the leukemia. Furthermore, he testified that the child's likelihood of being cured would be significantly less on relapse. The court dismissed the case stating that the parents' "concerns about long-term effects of chemotherapy" did not qualify as neglect. Furthermore, the court recognized that the patient was under the care of a licensed physician and refused to judge the relative merits of the two different treatment options recommended by two different physicians licensed to practice medicine in the state.¹

After the hearing, the holistic physician was reported to the State Medical Board to determine whether he had "departed from or failed to conform to minimal standards of care." After an investigation, the Secretary and Supervising Member of the State Medical Board determined that formal disciplinary charges were not warranted. Approximately 4 months after the court's decision, the patient experienced a recurrence of acute leukemia.⁴

DISCUSSION

Over the past several decades, the traditional approach of physician-directed decision making has decreased, whereas shared decision making, which strives to include the wishes of the patient and family, has increased. Although there is substantial literature dealing with declining or withdrawing treatment in adults with life-threatening illnesses, there is considerably less discussion of parents refusing or discontinuing therapy on behalf of their minor children with malignancies. Because cure rates for many childhood malignancies are more than 50% with standard therapy regimens, withholding treatment can be a difficult ethical dilemma for the treatment providers. The American Academy of Pediatrics⁵ and the International Society of Pediatric Oncology⁶ assert that physicians are obliged to seek legal recourse when parental refusal places a child at clear and substantial risk. Many have assumed that a court will automatically order that the child be treated, but such an assumption is incorrect, as is illustrated by this case.⁷

Each year in the United States, approximately 14,000 children are diagnosed with cancer, with ALL representing nearly one third of all these cancers. According to the National Cancer Institute's Surveillance, Epidemiology, and End Results program, the 5-year survival rate for children diagnosed with all forms of cancer between 1986 and 1993 was 72%, whereas the 5-year survival rate for ALL for the same period was 79%.⁸ Standard treatment for ALL consists of multiagent chemotherapy, although the specific agents, dose-intensity, and duration of therapy vary based on a variety of prognostic factors. ALL therapy requires an exhaustive commitment by the parents or caretakers for several years because these caretakers give chemotherapy at home by mouth or by injection; observe the patient for signs of infection, anemia, or bleeding; and bring the patient for frequent doctor visits and hospitalizations.

Within the framework of informed consent for treatment, physicians are obligated to provide the pediatric patient and family information pertaining to the diagnosis, prognosis, range of medical therapy available, and the risks and benefits of treatment or nontreatment. In addition, it is the physician's responsibility to the patient to establish the course of treatment that will provide the best opportunity for long-term survival. When dealing with patients with poor prognosis, limiting medical therapy is reasonable, ethical, and morally defensible because the burdens of therapy may outweigh the benefits, and parents must consider quality of life.⁹ Conversely, when standard therapy offers a high likelihood of long-term survival and a reasonable quality of life, it is difficult for the managing physician to understand withholding such therapy. Current laws provide parents with wide discretionary authority in raising their children.¹⁰ These laws, however, are balanced with child abuse and neglect laws to ensure that a parent's decision regarding treatment is in the best interest of the child. In addition to these legal aspects, ethical issues are intimately woven within the context of each clinical case.

The biomedical ethical principles of respect for autonomy (allowing free choice by the patient, perhaps exercised through a surrogate), beneficence (providing benefit to the patient), nonmaleficence (doing no harm to the patient), and justice (the obligation to distribute benefits and burdens proportionally) all weigh heavily on the providers' decision about how to respond when parents refuse standard therapy for their child with a favorable-prognosis malignancy.¹¹

In cases involving children, respect for autonomy is not seen in the same manner as in adults because young children often are not felt to have decisional capacity, which is prerequisite for autonomy. As children mature and enter the teen years, they usually develop capacity, and their input related to health care is often sought, acknowledged, and respected by their parents as well as their health care providers. However, unless the child has been declared emancipated by a court of law (ie, deemed to possess competence), it is the parent or guardian who theoretically exercises autonomy on behalf of their child. In such cases, proxy decisions should strive to be a "reasonable presumption of the child's wishes" even though such wishes may not be known.¹²

Beneficence and nonmaleficence are both somewhat murky principles as they relate to many cancer treatments and regimens. To reap the ultimate benefits from the intended therapy, harm must often result, as seen by various side effects of chemotherapy. In addition to the physical harms that a child may experience from the treatments, there are emotional harms that may be experienced not only by the child undergoing treatment, but also by family members. The emotional roller coaster that cancer patients and their loved ones experience may seem like a benefit if treatment is successful and cure is attained, or it may seem like harm if treatment ultimately fails.

Finally, the principle of justice is of interest. Cancer among children is not distributed with fairness or with equality. To those families affected by a child with cancer, it is seen as a cruel, unjust, and random assault. Justice appears, then, not in relationship to the disease, but rather to the treatment options. For many cancers, there are approved and effective standard treatments. Receiving a standard treatment for a specific cancer might be perceived as a right by those individuals afflicted with that specific cancer. "A holder of a valid claim based in justice has a right, and therefore is due something."¹¹

When parents wish to withhold or discontinue standard proven treatment in a child with cancer that has a likelihood of long-term cure, referral to the local child protection agency is indicated because a parent's inability to provide adequate care for a child is a criminal offense.¹⁰ The difficulty lies in defining a threshold of therapeutic success where treatment should be initiated against the wishes of the parent or guardian. This problem has been challenging for the legal system to resolve. Courts will order treatment over parental objections for conditions that are immediately life threatening, such as antibiotics for bacterial meningitis or insulin injections for diabetes mellitus; however, when the disease does not cause imminent harm but there are significant risks involved with the treatment, the decision of the court is less predictable (S. Weitzman, personal communication, December, 2002; S. Dubansky, personal communication, December, 2002).^13-15 Oncologists must also deal with the fact that their patients will require treatment for extended periods of time, and a significant portion of the therapy involves the home administration of oral medications.¹⁶

Five cases similar to the one presented here were found in the legal and ethics literature, from court transcripts, and from personal communication with treating oncologists. In all these court cases, the parents declined or withdrew standard treatment for their children with favorable-prognosis cancer (Table 1). In two of the six cases presented in Table 1, courts upheld the parents' wishes to withhold standard therapy. Factors considered in making these rulings included prognosis, therapeutic risks/complications, the parents' beliefs (religious/holistic), and whether the alternative therapy was under the direction of a licensed physician. To date, courts have generally defined adequate care as that care given by a licensed physician. The courts have almost never chosen one medical approach over another as long as both were directed by licensed physicians.¹⁶ The health care providers involved in such cases have had the option to report a licensed physician to a regulatory board if he or she was operating outside the minimum standard of care.

Physicians should also be aware that their actions may be perceived differently by different populations. Although the opinion of the pediatric oncology community is strongly in favor of following standard proven therapies, the general public may not be as supportive and may be swayed by the manner in which the case is presented in the media. In the case presented here, a local television station posted an internet-based survey, and 83% of the 395 responders supported the parents' "right to choose the kind of treatment for their kids."¹⁸ Furthermore, the vast majority of published editorials and letters to the editor regarding the present case, printed in local newspapers, strongly opposed the Department of Job and Family Services' decision to pursue standard treatment for the child in opposition of the parents' views (15 opposed compared with two in favor).^19-23

In summary, pediatric oncologists should be prepared for the many implications brought by a case such as this, in which parents refuse standard treatment for their child with cancer who has a favorable prognosis. As the probability of encountering a similar situation increases, so does the need to fully understand the relevant laws and ethical principles that apply. In dealing with the issues presented here, the oncologist must act as an advocate fighting to ensure that the child is given the best chance of cure while trying to balance the harms that may occur. In addition, the oncologist should consider reporting any physician to the state medical board who may have failed to meet the minimal standards of care.

Authors' Disclosures of Potential Conflicts of Interest

The authors indicated no potential conflicts of interest.

NOTES

Previously published in part in abstract format for the Annual Meeting of the Society for Pediatric Research, Seattle, WA, May 3-6, 2003.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

REFERENCES

1. In re Maxin, Case No. JU 124198 (Court of Common Pleas, Stark County, OH, 2002)

2. Gross A: Boy's cancer regimen up to court. Akron Beacon Journal November 15, 2002:A1

3. Gross A: Boy's care allowed. Akron Beacon Journal November 19, 2002:A1

4. Spector H: Little Noah now uses chemo. Plain Dealer May 30, 2003:A1

5. American Academy of Pediatrics, Committee on Bioethics: Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95:314-317, 1995[Abstract/Free Full Text]

6. The International Confederation of Childhood Cancer Parent Organisations. SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Guidelines for refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer. http://www.icccpo.org/articles/psychosocial/guidelines_refusal.html

7. Field MJ, Behrman RE: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC, National Academies Press, 2003

8. Ries LAG, Eisner MP, Kosary CL, et al: (eds): SEER Cancer Statistics Review, 1973-1998. Bethesda, MD, National Cancer Institute, 2001

9. Freyer DR: Children with cancer: Special considerations in the discontinuation of life-sustaining treatment. J Med Pediatr Oncol 20:136-142, 1992[CrossRef]

10. Holder AR: Parents, courts and decision making. J Pediatr 103:515-521, 1983[CrossRef][Medline]

11. Beauchamp T, Childress J: Principles of Biomedical Ethics (ed 5). New York, NY, Oxford University Press, 2001

12. McCormick RA: Proxy consent in the experimentation situation. Perspect Biol Med 18:11-13, 1974

13. In re Custody of a Minor, 379 NE2d 1053 (MA 1978)

14. In re Hofbauer, 395 NE2d 1109 (NY App. 1979)

15. In re Willmann, 493 NE2d 1380 (OH App. 1986)

16. Holder AR: Childhood malignancies and decision making. Yale J Biol Med 65:99-104, 1992[Medline]

17. McCurdy EA, Spangler JG, Wofford MM, et al: Religiosity is associated with the use of complementary medical therapies by pediatric oncology patients. J Pediatr Hematol Oncol 25:125-129, 2003[CrossRef][Medline]

18. News Channel 5, Cleveland, OH: Judge: Stopping son's chemo not neglect. http://www.newsnet5.com/news/1792069/detail.html

19. The Plain Dealer, Letters to the Editor, Liveline, November 30, 2002. Cleveland, OH. http://www.cleveland.com/livelines/index/ssf?/livelines/more/112902.html

20. Letters to the Editor. Wednesday forum. Akron Beacon Journal November 27, 2002:B3.

21. The Canton Repository. Editorial: Local case may redefine neglect. November 15, 2002. http://www.cantonrep.com/index.php?ID=71682&Category=3&fromSearch=yes&subCategoryID=0

22. "Complications in Care", editorial. Akron Beacon Journal, Section B, page 2, November 19, 2002. Akron, OH.

23. Editorial: A rainbow for Noah. Plain Dealer November 20, 2002.

24. to the Editor: Liveline: Should Stark County officials appeal a judge's ruling that the parents of a 7-year-old boy with leukemia are permitted to have him treated by nontraditional methods rather than chemotherapy? http://www.cleveland.com/livelines/index.ssf?/livelines/more/112902.html

Submitted March 7, 2006; accepted March 20, 2006.

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