Parent Wants the Treatment Children Doesnt Peer Reviewed
INTRODUCTION
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A 7-year-one-time male child presenting with bone pain and fever was found to have standard-gamble pre–B-cell forerunner astute lymphoblastic leukemia (ALL). Parental written consent was obtained to begin a standard 3.5-twelvemonth chemotherapy treatment regimen with an estimated 85% chance of long-term survival. Consecration chemotherapy was successful in producing remission; however, afterward three months of chemotherapy, the parents opposed continuation of the standard handling, citing concerns that chemotherapy would damage their son's immune system and crusade 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 lath 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 Chore 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 decide 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 consequence in a return of the leukemia. Furthermore, he testified that the child'southward 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 estimate the relative claim of the 2 unlike treatment options recommended by two dissimilar physicians licensed to practice medicine in the state.ane
Afterward the hearing, the holistic physician was reported to the State Medical Board to make up one's mind whether he had "departed from or failed to conform to minimal standards of care." After an investigation, the Secretary and Supervising Member of the Land Medical Board determined that formal disciplinary charges were non warranted. Approximately 4 months subsequently the court's decision, the patient experienced a recurrence of acute leukemia.4
DISCUSSION
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Over the past several decades, the traditional arroyo of medico-directed determination making has decreased, whereas shared decision making, which strives to include the wishes of the patient and family unit, has increased. Although there is substantial literature dealing with failing 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 tin be a difficult ethical dilemma for the treatment providers. The American Academy of Pediatrics5 and the International Club of Pediatric Oncology6 affirm that physicians are obliged to seek legal recourse when parental refusal places a kid at clear and substantial risk. Many take assumed that a court will automatically society that the kid be treated, but such an assumption is wrong, as is illustrated past this example.7
Each twelvemonth in the United States, approximately 14,000 children are diagnosed with cancer, with ALL representing most i third of all these cancers. According to the National Cancer Institute's Surveillance, Epidemiology, and End Results programme, the 5-year survival rate for children diagnosed with all forms of cancer between 1986 and 1993 was 72%, whereas the five-yr survival rate for ALL for the same catamenia was 79%.8 Standard handling for ALL consists of multiagent chemotherapy, although the specific agents, dose-intensity, and duration of therapy vary based on a diversity of prognostic factors. ALL therapy requires an exhaustive commitment by the parents or caretakers for several years considering these caretakers give chemotherapy at home by oral fissure or past injection; notice 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 doc'due south responsibleness 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 dominance in raising their children.10 These laws, even so, are balanced with kid corruption and neglect laws to ensure that a parent'due south decision regarding treatment is in the best interest of the kid. 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, perchance exercised through a surrogate), beneficence (providing do good 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' conclusion well-nigh how to respond when parents refuse standard therapy for their kid with a favorable-prognosis malignancy.11
In cases involving children, respect for autonomy is not seen in the same manner every bit in adults because young children frequently are not felt to take decisional capacity, which is prerequisite for autonomy. Every bit children mature and enter the teen years, they usually develop capacity, and their input related to wellness care is often sought, acknowledged, and respected by their parents besides 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 exist a "reasonable presumption of the child'south wishes" even though such wishes may non 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 furnishings of chemotherapy. In addition to the concrete 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 past family members. The emotional roller coaster that cancer patients and their loved ones experience may seem similar a benefit if handling 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 past a kid with cancer, information technology is seen every bit a cruel, unjust, and random assault. Justice appears, and so, not in relationship to the illness, 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 past those individuals affected with that specific cancer. "A holder of a valid merits 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.x The difficulty lies in defining a threshold of therapeutic success where handling should exist initiated against the wishes of the parent or guardian. This problem has been challenging for the legal system to resolve. Courts will order handling over parental objections for weather condition that are immediately life threatening, such equally antibiotics for bacterial meningitis or insulin injections for diabetes mellitus; all the same, when the affliction does not cause imminent impairment only at that place are significant risks involved with the treatment, the decision of the court is less anticipated (S. Weitzman, personal communication, December, 2002; Due south. Dubansky, personal communication, December, 2002).13-15 Oncologists must too deal with the fact that their patients will require treatment for extended periods of fourth dimension, and a meaning portion of the therapy involves the home administration of oral medications.sixteen
V cases similar to the one presented hither were found in the legal and ideals literature, from courtroom transcripts, and from personal communication with treating oncologists. In all these courtroom cases, the parents declined or withdrew standard treatment for their children with favorable-prognosis cancer (Table ane). In two of the vi cases presented in Tabular array 1, courts upheld the parents' wishes to withhold standard therapy. Factors considered in making these rulings included prognosis, therapeutic risks/complications, the parents' behavior (religious/holistic), and whether the alternative therapy was under the management of a licensed physician. To date, courts accept more often than not defined adequate care as that care given past a licensed physician. The courts accept most never chosen one medical approach over another as long equally both were directed by licensed physicians.16 The wellness care providers involved in such cases have had the choice to study a licensed doc to a regulatory board if he or she was operating outside the minimum standard of care.
Contempo studies bespeak an increased employ of complementary or alternative medicine in pediatric oncology patients, with 47% of patients using at least 1 alternative treatment, such as vitamin therapy, herbal remedies, or dietary regimens.17 For those families who lack faith in the possibility of cure from conventional medical treatment, the increased availability of alternative and complementary medicines may make them more probable to turn down standard well-tested therapies.
Physicians should likewise be aware that their actions may be perceived differently by dissimilar 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 past the manner in which the case is presented in the media. In the instance presented here, a local television station posted an internet-based survey, and 83% of the 395 responders supported the parents' "correct 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 example, 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 every bit this, in which parents decline standard treatment for their child with cancer who has a favorable prognosis. As the probability of encountering a like situation increases, so does the need to fully empathize the relevant laws and ethical principles that utilize. In dealing with the bug 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 doctor to the state medical board who may take failed to meet the minimal standards of intendance.
Authors' Disclosures of Potential Conflicts of Interest
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The authors indicated no potential conflicts of interest.
Department:
 | Table i. Court Cases in Which the Parents Declined or Withdrew Standard Handling for Their Children With Favorable-Prognosis Cancer |
Previously published in part in abstruse format for the Annual Meeting of the Lodge for Pediatric Research, Seattle, WA, May 3-6, 2003. Authors' disclosures of potential conflicts of involvement and author contributions are institute at the stop of this article.
Source: https://ascopubs.org/doi/full/10.1200/jco.2006.06.4709