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Pediatric-end-of-life decisions when abuse is suspected 

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Pediatric-end-of-life decisions when abuse is suspected 

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Journal of Ethics | American Medical Association

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Case

Sophie is a 7-month-old girl who was brought to the emergency department with symptoms that indicated increased intracranial pressure, including respiratory depression requiring intubation by paramedics during transit. A head CT revealed transtentorial herniation and large collections of blood, some of which appeared acute and some of which appeared chronic. There was also a nondisplaced occipital skull fracture. In the opinion of the chief of radiology, these were clear signs of nonaccidental trauma. An opthalmologist who detected multilayered retinal hemorrhages reached a similar conclusion.

Dr. Lopez, the attending physician in the PICU, assumed care after the patient was sent to the operating room, where a decompressive craniectomy was performed. The ED physician, Dr. Danner, contacted Dr. Lopez to let him know that, while they were still in the ED, Sophie's mother and her boyfriend acted very strangely and the story they gave to explain Sophie's condition did not match her injuries or the one they told Dr. Lopez. The police were called. They informed Sophie's mother and her boyfriend that a full investigation would take place and the specific charges brought against them could change depending on Sophie's ultimate outcome.

Now, 12 days later, Dr. Lopez has exhausted all of his medical and surgical therapies but Sophie continues to deteriorate. In a care conference with the family, Dr. Lopez and several colleagues encourage the family that withdrawing care is in Sophie's best interest, but the family insists on pursuing aggressive continued treatment. Dr. Lopez is concerned that the family is making this decision out of self-interest, instead of considering what is best for Sophie, though he knows that he will have trouble confirming or contradicting those suspicions.

Commentary

Sophie's case exemplifies the critical conflict in values and interests faced by numerous clinicians treating patients who lack the capacity to make their own medical decisions. Dr. Lopez and the medical team must weigh two competing ethical principles: (1) parental authority to make medical decisions and (2) Sophie's best interest. Generally, a parent's authority to make medical decisions on a child's behalf does not compromise the child's best interest. In some circumstances clinicians may become aware of evidence that a parent's decisions are contrary to the patient's best interest or that a secondary consequence-the threat of criminal charges, guilt, or numerous other factors-may be informing his or her motives. Families making end-of-life decisions for a child injured through suspected abuse may be influenced by the threat of criminal charges, feelings of guilt, and numerous other factors. Clinicians, with the support of ethicists and legal professionals, must ultimately determine who the appropriate decision maker is and whether the best interest of the child is being served, regardless of the parents' motives.

Determining the appropriate decision maker for a child is different than appointing a surrogate for an adult patient. Clinicians generally presume that an adult patient is competent to make his or her own medical decisions, including whom to appoint as a surrogate. When an adult patient lacks capacity, the medical team may look to a surrogate appointed through an advance directives, or, when such a designation has not been made officially, statutes provide guidance about who the legal surrogate might be. In either case, surrogates for a patient who has previously been competent should be informed by the patient's previously stated wishes or by evidence of his or her values. Children, however, have not yet had an opportunity to appoint a decision maker, identify their wishes, or establish evidence of their values. State and federal law and various professional committees have traditionally protected parental authority to make medical decisions for their children, including withdrawing or withholding life-sustaining treatment [1, 2]. But parents' rights are not absolute and may be removed in limited circumstances, particularly when their actions place the child at risk of harm.

Parental authority relies on the presumption that parents will make decisions in the best interest of their child [3]. The "best interest" standard requires that the decision maker weigh the potential benefits and harms associated with a given decision. Scholars have debated what constitutes the best interest [3], but there is consensus that parents are usually best situated to determine it according to their family values. Evidence of a secondary gain or consequence complicates this assumption. Sophie's family may be genuinely motivated by a belief that continuing life-sustaining treatments would be in Sophie's best interest. However, the possibility that they are driven by the threat of criminal charges may seem to raise the question of whether the family can make a determination of Sophie's best interest.

It is difficult to know when a parent's decisions are contrary to the child's interest or would result in harm. The process of determining the best interest of a critically ill child relies on the child's medical status, prognosis, and the parent's or family's values. For children who are likely to survive and improve to normal function, the determination to continue with life-sustaining treatment is informed by the potential benefits of the treatment. Conversely, if a child is unlikely to survive or likely to suffer from severe neurological damage or continued severe burdens during life, the harms of continuing with painful treatment may outweigh potential benefit. Many cases fall between these two ends of the spectrum. The prognosis may be unclear or unknown.

Given differences in values and perceptions, clinicians and parents may disagree about what is in a child's best interest. Here, the medical team seems to be of the opinion that withdrawing life-sustaining treatment would be in Sophie's best interest given her declining medical status. However, it is unclear whether continuing treatment will cause Sophie harm (e.g., long-term pain or discomfort) and whether there remains any opportunity for Sophie to improve. Clinicians, with support from legal and ethics professionals, may make the determination that a parent's decisions should not be respected only when the parent's decisions are clearly contrary to the patient's best interest.

If a parent is acting contrary to the best interest of the child, the medical team may seek judicial action. A state's authority to overrule a parent's rights stems from the doctrine of parens patriae. Under this doctrine, a state has the authority to protect the life and interests of individuals who are incapable of protecting themselves [3]. The American Academy of Pediatrics (AAP) recommends that a guardian ad litem be appointed "in all cases of child abuse requiring [life-sustaining medical treatment] in which a parent, guardian or prosecutor of the alleged abuser may have a conflict of interest" [4].

A guardian ad litem does not assume medical decision-making authority, but serves instead as an unbiased but compassionate advocate for the child's best interests [5]. In most states, the guardian collects information about the child's medical status, reviews law relevant to the circumstance, and makes a recommendation to the judge. Ultimately, a judge makes the final decision regarding withdrawal of life-sustaining treatment.

A majority of state courts have been reluctant to restrict parents' constitutional rights by removing a parent's decision-making authority. A determination that a parent's rights should be restricted requires clear and convincing evidence that a given decision is contrary to the child's best interest. This standard may be difficult to meet [2]. The AAP, too, supports a parent's right to make decisions regarding withdrawing treatment, even in cases of suspected abuse [4]. It recommends that decisions regarding life-sustaining treatment for children injured by suspected abuse should be determined by the same standards used in making decisions regarding other critically ill children.

Under the standards discussed above, Dr. Lopez and the medical team must separate the decision-making process from the cause of the potential injury and look only at whether continuing life-sustaining treatment is contrary to Sophie's best interest. Given Dr. Lopez's determination that he has exhausted all medical options, the team must then consider the burden to Sophie of continued support. They may be obligated to pursue discontinuing support if they conclude that continued treatment is not beneficial and would harm Sophie. These obligations stem from professional duties of beneficence and nonmaleficence.

A decision to discontinue life-sustaining treatment against the family's wishes will require the medical team to consult their ethics and legal advisors about removing Sophie's mother's parental authority through judicial intervention. Importantly, in cases when external factors such as known or suspected nonaccidental injury weigh heavily on clinicians' perceptions, they should not lose focus on the patient's best interest. Dr. Lopez and the medical team should make decisions based on Sophie's best interest, not according to the secondary consequences for the family or the suspected cause of her injuries.

Citation

Virtual Mentor. 2012;14(10):767-770.

DOI
10.1001/virtualmentor.2012.14.10.ecas3-1210.
The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

Author Information

Jalayne J. Arias, JD, MA is a fellow in the Cleveland Fellowship in Advanced Bioethics in Cleveland, Ohio. Ms. Arias's research includes conceptual analysis of competency and decision-making processes.

Kathryn L. Weise, MD, MA is a staff physician in the Pediatric Institute at the Cleveland Clinic in Ohio, where she conducts adult and pediatric ethics consultation and directs the Cleveland Fellowship in Advanced Bioethics. She is a pediatric intensivist who cares for patients at the Cleveland Clinic Children's Hospital for Rehabilitation, including children who are the victims of nonaccidental trauma. Her research interests include pediatric ethics and professional ethics.

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Pediatric End-of-Life Decisions when Abuse Is Suspected

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Sophie is a 7-month-old girl who was brought to the emergency department with symptoms that indicated increased intracranial pressure, including respiratory depression requiring intubation by paramedics during transit. A head CT revealed transtentorial herniation and large collections of blood, some of which appeared acute and some of which appeared chronic.

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Unilateral Termination of Life-Sustaining Treatment in Neonatal Care: A Legal Overview

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IN FAVOR: Physicians may reduce their decisional burden and increase appropriate reporting by participating regularly in continuing education related to child maltreatment, familiarizing themselves with reporting laws and local CPS staff, and consulting with colleagues

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IN FAVOR: Physicians may reduce their decisional burden and increase appropriate reporting by participating regularly in continuing education related to child maltreatment, familiarizing themselves with reporting laws and local CPS staff, and consulting with colleagues

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AGAINST: It is not the physician’s responsibility to determine the intent of the parent or caregiver, or whether abuse or neglect occurred. Their responsibility is to report their suspicions and allow trained professionals to conduct an investigation. 

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AGAINST: It is not the physician’s responsibility to determine the intent of the parent or caregiver, or whether abuse or neglect occurred. Their responsibility is to report their suspicions and allow trained professionals to conduct an investigation. 

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GENERAL INFO: Neglect is the chronic failure to meet a child’s basic needs—clothing, nutritious food, cleanliness, educational opportunity, medical and dental care, protection, shelter, and supervision

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GENERAL INFO: Neglect is the chronic failure to meet a child’s basic needs—clothing, nutritious food, cleanliness, educational opportunity, medical and dental care, protection, shelter, and supervision

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- In states that permit law-enforcement officers or physicians to take temporary protective custody of a child at risk for abuse or neglect (Illinois and Iowa, for example), a physician may be able to gain custody of an infant if he or she believes the parents are not acting in the baby’s best interest.
- Judicial decisions have been inconsistent and potentially unethical, several state legislatures have enacted statutory guidance. Maryland, Virginia, and Texas have all passed statutes that attempt to address the unilateral removal of life sustaining medical treatment.
- TADA clearly defines procedures for the physician, surrogate, and judicial system to follow when resolving impasses over termination of life-sustaining medical treatment.

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DIRECT QUOTES: "The level of suspicion required to report suspected abuse is not clearly defined"

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DIRECT QUOTES: "The level of suspicion required to report suspected abuse is not clearly defined"

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STATS: The national rate of child maltreatment was 12.1 per 1,000 children under age 18. According to the most recent national statistics available (from 2006), an estimated 3.6 million reports of suspected maltreatment were received by state CPS agencies, of which approximately 905,000 were substantiated 

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STATS: The national rate of child maltreatment was 12.1 per 1,000 children under age 18. According to the most recent national statistics available (from 2006), an estimated 3.6 million reports of suspected maltreatment were received by state CPS agencies, of which approximately 905,000 were substantiated 

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-  In some cases, the surrogate did not seek legal intervention, the physician unilaterally withdrew life-sustaining treatment without the permission of the surrogate, and the infant died. The recourse for the surrogate is to sue for damages in a tort claim or file a medical malpractice claim

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- Once the primary physician makes it clear to the infant’s surrogate that he or she is unwilling to continue aggressive life-sustaining treatment and intends to withdraw it, several courses of action are available.
-The physician can attempt to gain custody of the child in states that have temporary protective custody statues.
- A statutory process may exist to handle the dispute, or, if the physician withdraws treatment unilaterally, the surrogate can attempt to punish the physician through retributive litigation.

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"As long as the physician did not make unrealistic promises and clearly described the consequences of the action he or she was about to take, he or she is unlikely to be found legally liable to the surrogate for the death of the baby"
"In 1999 the American Medical Association adopted an opinion detailing the ethics of futile care. The Texas legislature incorporated much of that opinion in the Texas Advance Directives Act (TADA).

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Journal of Ethics | American Medical Association

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The law's inquiry into parental competence to provide medical care for a child does not stop at assessing their physical and mental ability to do so; it also examines their willingness to make medically appropriate decisions. The decision of a physically and mentally competent parent to pursue a particular path of treatment may, for example, not accord with the best interests of the child, particularly if a child is not of an age where he or she can contribute to the process. Parents have a legal obligation to refrain from actions that may harm their child. Medical decision making, though, has a certain ambiguity-when does a particular choice indicate that the parent is unable to decide on appropriate care? Religious objections to treatment have a long history of acceptance and, while not absolute, can at times be codified into law [1]. Objections motivated by other beliefs may not receive the same protections and may cause parental objection to specific treatment to be overturned by a court or other authority with more ease than objections based on religious beliefs.

Religious Objections

The Supreme Court of the United States has long upheld the right of parents to make decisions for their children based on religious grounds. Generally, when the physical or mental health of the child is not at stake, states and courts defer to the decisions of the parents. For medical decisions, mental or physical health will always be at stake, so a different balancing process must be employed to ensure that the state carries out its duty to protect its citizens but does not infringe on the rights granted to individuals by the First Amendment to the Constitution.

When attempting to declare a given medical treatment decision inappropriate, the state has a high burden of proof because of the great value placed on autonomous parental decision making. The court must weigh the rights of a parent against the interests of the child. One important factor in this process is the expected outcome of the illness or disease: if the proposed medical treatment has a good chance of success and the predicted outcome without treatment is death, courts are more likely to intervene and overrule parental decisions; if the proposed medical treatment does not have a high likelihood of success or the predicted outcome is not death, courts frequently uphold the decision of parents. Generally, it is only when the child's life is at risk that the weighing of interests favors the child and the government authority that is asserting the child's rights.

In one litigated case of religious objections to care by Christian Scientists, the interests of the parents, the child and the state were weighed with consideration of a state law that permitted medical decision making to be influenced by religious doctrine. The Supreme Court of Delaware in Newmark v. Williams landed on the side of the parents. The child in Newmark was diagnosed with Burkitt's lymphoma and was given a 40 percent chance of survival if he obtained chemotherapy treatments. His parents decided that, rather than allowing an uncertain and painful medical treatment, they would seek treatment through their church [2]. The state objected and filed for temporary custody of the child.

The court determined that the parents were within their rights to forgo the treatment. According to the court,

...the spiritual treatment exemptions reflect, in part, "the policy of this State with respect to the quality of life" a desperately ill child might have in the caring and loving atmosphere of his or her family, versus the sterile hospital environment demanded by physicians seeking to prescribe excruciating, and life-threatening, treatments of doubtful efficacy [3].

The determining factor was that the treatment proposed by the child's physician had only a 40 percent chance of success. From the court's discussion of other legal precedents, if a treatment was more likely to succeed than fail (i.e., had greater than 50 percent chance of success), the state could be justified in gaining custody of a child to obtain medical treatment over the religious objections of his or her parents, although the court made no definitive statement on this matter.

In a more recent case, the Court of Civil Appeals of Oklahoma came to a different conclusion based on a set of facts much more favorable to the state. In the Matter of D.R., the child suffered from seizure activity and developmental difficulties. While in physical therapy to address these problems, she experienced a severe seizure, after which her parents discontinued therapy and sought no other treatment. The state intervened, alleging medical neglect by the parents because the child's condition was potentially life-threatening.

The court decided in favor of the state based on the severity of the medical problem, the likelihood of success of the proposed treatment and the limited potential harm of the treatment. It was "well-settled that the state may order medical treatment for a nonlife threatening condition, notwithstanding the objection of the parents on religious grounds, if the treatment will, in all likelihood, temporarily or permanently solve a substantial medical problem" [4]. The court recognized that the state could not order treatment over religious objection of the parents if the treatment was "risky, extremely invasive, toxic with many side effects, and/or offers a low chance of success" [5]. This decision, consistent with Newmark, illustrates the difficulties in determining who should make medical decisions for a child.

Nonreligious Objections

Religious objection has a firm foundation in the Constitution and legal precedent. It is much more difficult for courts to justify parental refusal of treatment for reasons not based in recognized religion (a somewhat arbitrary distinction, but consistently used). For example, if a parent prevented needed care because of a fear of nonexistent risks, the state would be able to intervene with little opposition by courts. Parents have more flexibility in choosing among different treatments that all have some scientific validity; they need not choose the best available treatment. The caveat here is what constitutes valid treatment-courts do not always agree on this.

For decades, laetrile, a chemical compound found in various foods, has been considered by some to be an effective form of cancer treatment. Mainstream medicine has never embraced laetrile use, and there have been no clinical trials of its efficacy [6]. Yet, within a month two courts in the Northeast decided cases based on the use of laetrile and metabolic therapy and came to very different conclusions about its use.

The case of Joseph Hofbauer in New York concerned the definition of "neglected child" [7]. Joseph had Hodgkin's disease, and his physician recommended that he be seen by a specialist for further treatment that could include radiation or chemotherapy. Joseph's parents rejected the recommendation and took him to Jamaica where he received a course of metabolic therapy that included the use of laetrile. After his return to the U.S., the state sought to remove Joseph from the custody of his parents on the grounds that failure to enroll him in conventional treatments constituted neglect. A court order authorized continued treatment with metabolic therapy on the condition that Joseph be monitored by a second physician.

At trial, there was voluminous testimony concerning treatments for cancer. Physicians for the state testified that metabolic therapy was inadequate and ineffective for the treatment of Hodgkin's disease. Physicians for the parents testified that metabolic therapy was beneficial and effective, although they did not preclude the use of conventional treatments that the parents sought to avoid. A scientist testified to an animal study conducted on mice showing the effectiveness of laetrile and other substances. Both sides admitted to the dangerous potential side effects of conventional treatments.

The court began by noting that the statute pertaining to adequate medical care for children required a parent to "entrust the child's care to that of a physician when such course would be undertaken by an ordinarily prudent and loving parent 'solicitous for the welfare of his child and anxious to promote (the child's) recovery'" [8]. Parents can rely on the advice of licensed physicians, because those physicians are "recognized by the State as capable of exercising acceptable clinical judgment" [9]. The question most important to this court was whether the parents provided an acceptable course of care in light of surrounding circumstances. The court determined that the parents were justified in their concern over conventional treatments, that there was medical proof of the effectiveness of laetrile and that metabolic therapy had fewer risks than radiation or chemotherapy. Therefore, Joseph was not neglected within the meaning of the statute.

A month after the New York decision, Massachusetts had occasion to answer the same question: was laetrile appropriate medical treatment? In Custody of a Minor, a three-year-old boy suffered from acute lymphocytic leukemia [10]. An earlier court decision had ordered that the child undergo chemotherapy, which was successfully completed. Thereafter, his parents discontinued his medications and the leukemia recurred. The parents sought to supplement their child's chemotherapy with metabolic therapy, including laetrile.

Both the parents and the state introduced expert testimony pertaining to the safety and efficacy of laetrile. None of the parents' experts claimed expertise in the area of blood diseases or leukemia. The state presented various experts in blood diseases, including the child's physician. At an earlier hearing, a judge had concluded that "not only are the assertions concerning metabolic therapy's alleged palliative effect unconfirmed by any well-documented evidence, but there are several alternative explanations for this observed phenomenon" [11].

The court found that the use of laetrile was potentially harmful to the child because of the possibility that it would interfere with chemotherapy and because it posed a risk of cyanide poisoning. The court also decided that "family autonomy is not absolute, and may be limited where, as here, it appears that parental decisions will jeopardize the health or safety of a child" [12]. The court determined that the use of laetrile in this specific case was "not consistent with good medical practice," but it did not address the use of laetrile in all circumstances, drawing a careful distinction with Hofbauer by noting the additional testimony of laetrile's possible effectiveness and the different type of cancer at issue in that case.

Interpreting the Courts' Rulings

The end result of a court battle over the provision of medical treatment depends on the type of objection-religious or secular, the proposed treatment and the prognosis for survival with and without treatment. Religious objection to standard medical therapy is often legally valid when the treatment is more likely to fail than succeed. Respect for religion has forced courts to recognize that medical decisions are not always scientific-many people rely on faith to heal them. On the other hand, the right to refuse treatment based on religious objection is not absolute. In cases where adherence to religious tenets that prohibit standard, life-saving care, e.g., blood transfusion, would almost certainly lead to a child's death, the courts have decided that parents cannot make martyrs of children who are too young to have consented to embrace the faith.

Objection for other reasons leads to more varied court decisions, but these objections can be overruled more easily than faith-based objections. Parents cannot refuse all medical treatment as they can if the objection is based on recognized religious doctrine. If alternatives may be successful and are less invasive than a risky standard medical treatment, courts may defer to parents. If the alternative treatment has no scientific merit, courts will most likely prevent parents from standing in the way of their child's health.

It is important to remember that legal competence to make medical decisions for children is not just about physical or mental capacity; it is also about making appropriate, best-interest decisions. Medical neglect statutes examine whether appropriate care was provided, not how it was provided. A parent who refuses care based on an objection to treatment, whatever the basis, is just as likely to have the state intervene to make medical decisions as a parent who is not physically able to provide care or not mentally capable of making decisions.

Citation

Virtual Mentor. 2006;8(10):676-680.

DOI
10.1001/virtualmentor.2006.8.10.hlaw1-0610.
The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

Author Information

Lee Black, LLM is a policy analyst for the Council on Ethical and Judicial Affairs at the American Medical Association in Chicago, Illinois. Prior To joining the AMA, he was a staff attorney with the Legislative Reference Bureau in Springfield, where he drafted legislation for the Illinois General Assembly.

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Limiting Parents' Rights in Medical Decision Making

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The law's inquiry into parental competence to provide medical care for a child does not stop at assessing their physical and mental ability to do so; it also examines their willingness to make medically appropriate decisions.

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The parents decision of finding treatment elsewhere. As in a church instead of the usage of painful medical treatments.

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Parents’ rights are not absolute and may be removed in limited circumstances, particularly when their actions place the child at risk of harm.

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The American Academy of Pediatrics  recommends that a guardian ad litem be appointed “in all cases of child abuse requiring life-sustaining medical treatment in which a parent, guardian or prosecutor of the alleged abuser may have a conflict of interest”. A guardian ad litem does not assume medical decision-making authority, but serves instead as an unbiased but compassionate advocate for the child’s best interests. In most states, the guardian collects information about the child’s medical status, reviews law relevant to the circumstance, and makes a recommendation to the judge. Ultimately, a judge makes the final decision regarding withdrawal of life-sustaining treatment.

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medical teams should make decisions based on the patient's best interest, not according to the secondary consequences for the family or the suspected cause of injuries.

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medical teams must weigh two competing ethical principles : parental authority to make medical decisions and the patient's best interest.

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there aren't any stats in this article. it talks about the decision process of removing the parent's authority to make decisions for their child.

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- The provision of medical treatment hinge on the types of objection. As in of religious or secular, proposed treatment, and with or without treatment.
- Legal competence involves the factor of making the most appropriate decisions.
- Court would be weighing parents interest of the child and its outcome of illness/disease.

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- States do the need to protect its citizens, but parent rights are granted to people by the First Amendment to the Constitution.
- Courts uphold the decision of parents from the highly medical needed treatments and the intervene parental decisions.
- Nonreligious objections gain parental refusal of treatment. Parents have more flexibility in choosing treatments.

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"…the spiritual treatment exemptions reflect, in part, “the policy of this State with respect to the quality of life” a desperately ill child might have in the caring and loving atmosphere of his or her family, versus the sterile hospital environment demanded by physicians seeking to prescribe excruciating, and life-threatening, treatments of doubtful efficacy [3]." To explain this importance, it shows there's several factors of treatment success rates. It takes notice in all the information and life components to the patient.

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There is 50% or higher of success for treatment process. The State would then justify for custody of a child.

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Journal of Ethics | American Medical Association

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Liability for Failure to Report Child Abuse

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Physicians are obligated by ethical and legal standards to preserve patient confidentiality, but the requirement is not absolute. Confidentiality can be breached ethically when the safety of the patient or an identifiable third party is at risk or when the law requires. There are many legal exceptio…

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This article talked about the liability physicians have to report suspected child abuse. It gave specific examples of court cases such as Landeros v. Flood and Becker v. Mayo Foundation. In The Landeros v. Flood case whether Dr. Flood provided sufficient care for his patient was argued as well as his failure to report suspected child abuse. The article also talked about how all states have mandatory child abuse reporting laws, whether a physician is civilly liable rather than for negligence or malpractice varies from state to state. For example, in Becker v. Mayo Foundation the civil liability for failing to perform a statutory duty and the child abuse reporting statutes were not allowed to be introduced since Minnesota didn't have those laws.

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Legal Restrictions on Decision Making for Children with Life-Threatening Illnesses—CAPTA and the Ashley Treatment

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IN FAVOR: Parental resistance to immunizations put communities in danger as a whole. As a result, it is important for doctors to report refusal to proper medication. 

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IN FAVOR: Parental resistance to immunizations put communities in danger as a whole. As a result, it is important for doctors to report refusal to proper medication. 

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- physicians, parents, or other decision makers who are considering palliative measures rather than medical treatment or resuscitation on behalf of pediatric patients should be aware of federal and state statutory and case law that may restrict their decision.
- a state’s child protective services must have and exercise the authority to initiate legal proceedings to prevent medical neglect and to provide medical care or treatment for a child when necessary to prevent or remedy serious harm to the child.
- The CPS agency sought temporary custody and petitioned family court for a decision regarding AMB’s best interests
- federal and state statutory and case law imposes significant restrictions on the decision-making authority of parents and physicians.
- CAPTA grants must restrict the withholding of medically indicated treatment from disabled infants with life-threatening conditions unless...
(1) the infant is chronically and irreversibly comatose
(2) the treatment would merely prolong dying
(3) the treatment would be virtually futile in terms of the survival of the infant

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AGAINST: Doctors often hesitate to report parents who refuse their children's immunizations as they may interfere/offend someone's religion. This causes some officials to go against reporting as they are afraid of belittling someone's morals/beliefs. 

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AGAINST: Doctors often hesitate to report parents who refuse their children's immunizations as they may interfere/offend someone's religion. This causes some officials to go against reporting as they are afraid of belittling someone's morals/beliefs. 

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Journal of Ethics | American Medical Association

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Adults have the right to reject any type of medical treatment, whether for religious or other reasons, as long as they are deemed to have decision-making capacity. When parents make decisions for their children on religious or other grounds, however, states may intervene because they have a duty to protect the well-being of children who are not legally old enough to make their own decisions. Many cases that have come to the attention of the state turn on the question of whether a parent has the right to choose alternative therapy over conventional medical treatment for a child.

Courts have not ruled consistently for one side over the other because the constitutional rights of parents, such as freedom of religion, right to privacy, and fundamental liberty to raise their children as they desire, provide strong support for parents' right to decide. However, courts must weigh the constitutional interests of parents against the state and federal governments' interests in protecting the children to whom they owe a duty [1]. Most cases that reach the courts seek state intervention to prevent serious injury or death of the child, but in cases in which the child has died, the charges brought against parents are not child abuse and neglect, but homicide.

Thirty-nine states have religious exemptions in their civil codes on child abuse or neglect, and 19 states have religious defenses to felony crimes against children that shelter parents from misdemeanor violations if they treat the children through prayer in accord with the beliefs of a recognized religion. The scope of religious exemption and defense laws varies widely, however [2].

In one of the following three cases, the state was determined to have legitimate concern for the well-being of a child; in another, the parents were given full control of their child's medical therapy; and in the third, a child's death sparked a homicide charge against the parents.

In the Matter of the Welfare of the Child of Colleen and Anthony Hauser [3]

Daniel Hauser, 13, was diagnosed with Stage IIB nodular sclerosing Hodgkin disease. Daniel's parents are strong believers in the holistic benefits of Nemenhah, a Native American healing practice, although they do not hold themselves out as Native Americans. In fact, the Hausers are traditional Catholics. The State of Minnesota intervened in Daniel's case when his physicians raised concerns about his not receiving medical treatments deemed imperative to his survival [4].The court ruled that Daniel's parents violated Minnesota's long-standing statutory requirement that parents must provide "necessary medical care" for a child [5-8] and required them to consent for chemotherapy treatment for their son.

When Daniel was diagnosed, his family physician referred him to oncology specialists at a children's hospital where it was determined his cancer should be treated with chemotherapy. Daniel's mother consented to a first round of chemotherapy treatment for her son. Although Daniel's lymphoma responded well to the chemotherapy, he suffered side effects. Daniel reported being sick to his stomach, weak, and unable to walk. Daniel's parents consulted with five physicians at the Mayo Clinic and other academic medical centers for second opinions. All medical advice pointed the Hausers toward chemotherapy as the best treatment option for Daniel. Most children, 80-95 percent, in Daniel's situation go into remission within 5 years of the recommended chemotherapy. All of these physicians were of the opinion that if Daniel did not adhere to the treatment, he would not survive. Daniel's parents did not continue chemotherapy after the first round, based upon their strong beliefs in alternative medicine [9].

Daniel's mother testified that she was "starving" Daniel's cancer with methods including doses of high-pH water to make his body more alkaline (because cancer cannot survive in an alkaline environment) and a diet of greens, proteins, and no sugars. She admitted these remedies were found on the Internet. Daniel's physicians reported the Hausers to the county's department of child protective services after Daniel stopped chemotherapy [9].

The Minnesota court ruled that, while Daniel's parents might have strongly believed the alternative forms of therapy were best for him, they were, in fact, breaking Minnesota law. The court found Daniel's parents to be loving and caring parents and allowed him to stay in their custody, provided they continued the medically necessary therapy. The court stated it would have been bound by Minnesota law and intervened in Daniel's medical treatment whether or not his tumor had grown larger without the medically advised therapy. However, the court made mention of wanting to relax the state law to allow those who choose alternative forms of therapy to do so if the alternative forms of treatment have been proven effective [3].

In Re Hofbauer

When Joseph Hofbauer, 7, was diagnosed with Hodgkin disease, his physician recommended radiation and chemotherapy as the appropriate medical treatments. After receiving several opinions from medical doctors, Joseph's parents decided to take their son to Jamaica where he received nutritional or metabolic therapy, including injections of laetrile. When Joseph and his parents returned home to New York, the state intervened after learning that Joseph was not receiving the recommended chemotherapy from his attending medical doctor. The court ruled that Joseph's parents did not violate New York law since they were providing an acceptable course of medical treatment for their child, taking into consideration all of the surrounding circumstances [10].

New York law states that a neglected child is "one who is less than eighteen years of age whose physical condition has been impaired or is in imminent danger of becoming impaired as a result of the failure of his parent to exercise a minimum degree of care in supplying the child with adequate...medical...care" [10, 11].

The court ruled, based upon expert testimony, that Joseph's parents had chosen treatment for their son that was not completely rejected by all responsible medical authorities and had sought accredited medical opinions when making their decision. Several studies have proven that the metabolic treatment Joseph received could control his disease and is not as toxic as conventional treatment. A New York state-licensed physician, who was a proponent of metabolic therapy, monitored Joseph's case along with another physician. Joseph's parents and his physicians reported that he was responding well to the metabolic therapy and that his appetite and energy level were good. Joseph's parents also stated they would consider conventional medical treatment if at any time Joseph's condition seemed to deteriorate [12].

Taking all of the circumstances into consideration and aligning them with New York law, the court found that Joseph's parents consulted with numerous physicians, had continued to closely monitor their son's progress with several physicians, and never ruled out the option of conventional therapy if their son's condition worsened [13].

In this case, the court felt that Joseph's parents had made an educated and informed decision about their son's medical treatment. The fact that metabolic therapy is not wholly rejected by the medical community and that Joseph's condition did not deteriorate after receiving the therapy gave the court grounds to uphold Joseph's parents' decision to use alternative treatment for their son.

State of Wisconsin v. Dale and Leilani Neumann

In what is believed to be the first case in Wisconsin involving faith healing in which one person died and another was charged with homicide, Dale and Leilani Neumann were convicted of homicide after their 11-year old daughter died from untreated diabetes.

Wisconsin has a religious exemption to child abuse and neglect laws that allows parents to use religion or faith-based rituals as an effective defense for not choosing conventional medical treatments for their children. In this case, however, the Neumanns were charged with homicide, not child abuse and neglect, so the religious exemption was not applicable [14].

News reports state that Kara Neumann, 11, had not seen a medical doctor since she was 3 years of age and died of untreated diabetes. Kara was reportedly in a coma, surrounded by family and friends praying for her, when her aunt called 911 to report Kara's state and express her concern. When authorities arrived at the Neumann residence, Kara was unresponsive and efforts to revive her were unsuccessful [15].

The Neumanns belong to the Unleavened Bread Ministries, a small church that favors prayer over medicine. At their trial, reporters wrote that the Neumanns stated they did not regret their course of action and believed in prayer as the best healing method for themselves and their children [15].

Experts say inconsistencies in Wisconsin law that allow the defense of religion in some cases e.g., child abuse or neglect, but not in other cases, e.g., homicide, are grounds for Kara's parents to appeal their conviction to the Supreme Court of Wisconsin [14]. Time will tell how far the appeal goes and how the court will rule on the religious exemption in state law. Meanwhile, the case has stirred controversy for Wisconsin lawmakers, who are proposing legislation to address it.

Conclusion

Balancing parents' rights to raise their children and a state's right to protect the children in their communities is no easy task, even when most states have religious exemptions to their child abuse or neglect laws. Courts straddle the line when it comes to analyzing cases involving alternative forms of medicine chosen for minors. Courts have ruled in favor of both parents and states, depending on the circumstances. The Neumann case brings to light a different question about child abuse and neglect laws to protect medically untreated children-do state laws with religious exemptions for child abuse and neglect apply to homicide or manslaughter, and what is the intent of the laws that are in place? Wisconsin legislators may tackle this very issue soon and, if they do, could spur other states to review inconsistencies in their own laws.

Citation

Virtual Mentor. 2011;13(6):369-373.

DOI
10.1001/virtualmentor.2011.13.6.hlaw1-1106.
The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

Author Information

Kavitha V. Neerukonda, JD, MHA is a senior policy analyst in the Center for Patient Safety and the Institute for Ethics at the American Medical Association in Chicago, where she participates in policy development, advocacy, and strategic planning on patient safety.

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Choosing Alternative Treatments for Children

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Adults have the right to reject any type of medical treatment, whether for religious or other reasons, as long as they are deemed to have decision-making capacity. When parents make decisions for their children on religious or other grounds, however, states may intervene because they have a duty to protect the well-being of children who are not legally old enough to make their own decisions.

# data[].attributes.headline
GENERAL: Areas with less immunization rates often have higher rates of sickness as well due to herd immunity: resistance to the spread of an infectious disease within a population that is based on pre-existing immunity of a high proportion of individuals as a result of previous infection or vaccination. 

# data[].attributes.subject
GENERAL: Areas with less immunization rates often have higher rates of sickness as well due to herd immunity: resistance to the spread of an infectious disease within a population that is based on pre-existing immunity of a high proportion of individuals as a result of previous infection or vaccination. 

# data[].attributes.body
-Parental preference for palliative care is often honored when the benefits of continued treatment are uncertain and the burdens of medical treatments and the illnesses themselves seem great
-the hospital had violated state law and Ashley’s constitutional and common law rights by performing the hysterectomy without a court order

# data[].attributes.headline
DIRECT QUOTES: "Parental refusal has been implicated in the development of 'hot spots': locations where the herd immunity provided by compulsory vaccination has been weakened sufficiently for disease outbreaks to occur."

# data[].attributes.subject
DIRECT QUOTES: "Parental refusal has been implicated in the development of 'hot spots': locations where the herd immunity provided by compulsory vaccination has been weakened sufficiently for disease outbreaks to occur."

# data[].attributes.headline
STATS: 500 cases and 7 fatalities were traced to unvaccinated families (including children).

# data[].attributes.subject
STATS: 500 cases and 7 fatalities were traced to unvaccinated families (including children).

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-Palliative care should provide comfort and and an increased quality of life for terminally ill patients rather than providing a cure or prolong life.
-Most states have adopted federal government regulations of requirement's for states that receive grants under the Child Abuse Prevention and Treatment Act.

# data[].attributes.body
-" Two important examples of legal restrictions on decisions involving pediatric palliative care are the federal Child Abuse Prevention and Treatment Act of 1996 (CAPTA) and Constitutional and case law restrictions on sterilization surgery such as the Ashley Treatment in disabled children."
-" Under CAPTA, failing to provide appropriate nutrition, hydration, and medication to any infant with a life-threatening condition always constitutes “withholding of medically indicated treatment.”
-" The same holds true for failing to provide such an infant with a treatment that, in the physician’s reasonable medical judgment, is most likely to ameliorate or correct the condition"

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In this article, it informs about how the rejection of a treatment has to have a worthy decision capacity about the child's medication/pathway.

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In the Re Hofbauer case, the medical treatments the parents chosen helped improved the child’s disease/condition.

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In the Neumann case, doctors should have the rights from the parents being so involved with religious factors that they don’t seek medical help at all.