Considering Complementary and Alternative Medicine Alternatives in Cases of Life-Threatening Illness: Applying the Best-Interests Test

Parents

Parents have an ethical duty to make decisions for their children. A primary consideration is to do what is possible to preserve the child's life, consistent with the principle of sanctity of life. This is not the only consideration, however. Parents should think broadly about what they believe to be in their child's best interests while considering also the potential harms and benefits of treatment options, consistent with duties of beneficence and nonmalfeasance. Included in this harm/benefit assessment should be consideration of how best to minimize the child's suffering and maximize quality of life. Parents should assess these factors according to their beliefs and values, what they know about their child, and in light of their goals and expectations of what a good life would be like for their child. These factors may be shaped by their cultural and religious backgrounds, their personal experience, and their own ethical framework.

Physicians

Parents are accorded considerable latitude in making health care decisions for their children, especially in circumstances of medical uncertainty. Physicians may experience a tension between their obligation to respect this parental role (ie, the parents' moral and legal authority to make decisions for their children) and their own obligation to advocate for and protect their patients. In some situations, a physician together with other members of the health care team may feel strongly that there is only 1 ethically justifiable course of action, given the child's condition and what is predictable regarding the treatment's effectiveness and the consequences of not having treatment. Should that be the case, the physician should provide parents with as much information as is available about treatment options, make a medical recommendation, and offer assistance with making decisions. The physician should explore the parents' rationale and explain why he or she believes the particular treatment is necessary. Whenever possible, information should be provided in the parents' language of choice, and interpreters should be available to assist with communication to ensure understanding. If parents continue to resist despite serious risk to the child's life or health and the physician concludes that the reasons that support treatment outweigh the parents' rationale, he or she is likely obliged to consult with child welfare authorities.

In this scenario, however, the primary care physician is uncertain that liver transplant is the only justifiable course of action. Consultation with professional colleagues and/or specialists about the advisability of transplant can help the physician ensure that she adheres to the standard of practice when advising Angela's parents. Consultation with a bioethicist or ethics committee, if available, may also help everyone concerned and may allow Angela's physician to share the burden of moral distress associated with this challenging situation.

Best Interests and Parental Obligations

Parents and guardians have a legal duty to ensure that minor children are provided with needed health care. Their decisions to consent to or refuse treatment should be made in the child's best interests.^1,–,5 In some jurisdictions, health care consent legislation specifies factors to consider, including relative burdens and benefits of treatment and alternatives, whether treatment would improve the person's condition or slow deterioration, congruence with the patient's values and beliefs, and whether less intrusive treatment would be as beneficial.⁶ Even without specific legislation, courts undertake a similar assessment when determining best interests.^5,7,–,9 People may disagree about how to weigh these factors. Apart from religious and cultural considerations, when the benefits of treatment are far from certain and the associated risks and burdens are significant, views about a child's best interests may differ radically.¹⁰

Constraints on Parents' Decision-Making Authority

Although the law allows parents considerable discretion in deciding about their children's health care, they are subject to significant limits. If a child is deemed in need of protection in child-protection proceedings (which can be triggered when parents fail to obtain or permit needed medical care), the state can intervene to authorize medical treatment to protect his or her life, health, or well-being.^1,–,5,7,11 Parents' religious beliefs and cultural values alone cannot justify treatment decisions that seriously endanger a child's life or health. There must be reasonable therapeutic justification for subjecting children to medical procedures that have potentially damaging effects.^5,9,12,13 Parents' authority to refuse needed treatment is also restricted.¹¹In Re B(R.) v Children's Aid Society of Metropolitan Toronto, a case in which child welfare authorities were authorized to consent to blood transfusions needed to prevent serious risk to a child's health, the Supreme Court of Canada summarized limits on parental decision-making authority: their decisions must not “exceed the threshold dictated by public policy, in its broad conception.”^1,* Although it is not a precise test, it emphasizes the primacy of parents' responsibility to protect and nurture their children.

Intervention Principles

When illness seriously threatens a child's health and the parents will not consent to available effective treatment, the child's health care providers must notify child welfare authorities.^5,11,14,15 Legislation in all American and Canadian jurisdictions authorizes measures to ensure that needed medical care is provided to a child found in need of protection.^11,14,–,17

When risks of foregoing treatment are less serious or less immediate, parental refusal of treatment is more likely to be allowed to stand by health care providers, child-protection authorities, and courts.^11,18,–,22

Applying the Best-Interests Test

How do courts determine best interests? First, the “best interests” must be the child's, not other people's.⁹ Second, decided cases emphasize expert evidence about medical practice and assessment of benefits and burdens of treatment and alternatives, including nontreatment.^1,13,20 Third, courts recognize the importance of other dimensions in decision-making beyond clinical factors and take psychological, social, and emotional considerations into account when appropriate.^20,–,22

When the threat to a child's life or health is serious and imminent and there is a reasonable prospect that treatment can help, courts will authorize child welfare authorities to consent to treatment when the parents will not.^1,7,11,23,24 For instance, a Quebec court temporarily transferred custody to a child welfare authority to make treatment decisions for 2 HIV-positive children whose mother refused medically recommended antiretroviral therapy and treated them with natural remedies.^25,* In another case, a Saskatchewan court concluded that it was in the best interests of a 13-year-old boy with bone cancer who lacked the capacity to decide about treatment to undergo medically recommended chemotherapy and amputation of the affected leg despite objections by the boy and his parents, who wanted to rely on alternative therapies and prayer (ultimately, the cancer was too advanced to proceed).²⁶ In the United States, child welfare authorities were awarded custody of a child when his parents, who preferred dietary supplements and prayer, refused renewed chemotherapy for his leukemia.¹² In Renfro v Renfro,¹³ the court noted that when unconventional treatment (various CAM modalities) hindered generally accepted medical treatment for a child's malignant brain tumor, alternative treatment was not in the child's best interests. These decisions and others like them make courts' strong orientation toward preserving children's life and health clear.

However, other courts have upheld parents' refusal of aggressive treatment for a child with life-threatening illness, generally when the burdens of treatment are great and chances of benefit are low^7,20,22 or when the parents' decision was supported by medical experts.¹⁵ In Saskatchewan, parents' refusal of a potentially life-saving liver transplant for their infant son was sustained.^20,27 Expert medical testimony was divided, but a majority of the experts viewed the parents' decision as reasonable. The court concluded that the parents' decision was within the bounds of current medical practice and in keeping with the values society expects from thoughtful, caring parents of a terminally ill child.

Advances in transplant technology and posttransplant care can alter medical and judicial assessments. In our scenario, the nature of Angela's illness introduces another consideration: a transplant may not stop progression of the disease,^28,–,31 which in turn affects the assessment of risk and benefit.

Because the jurisprudence is limited, the range of factual circumstances and their interplay with medical and other considerations are so varied, and the associated calculus of risks and benefits is often contentious, it can be difficult to predict when courts will intervene beyond the guidance offered by these general principles and examples. In cases of disagreement that cannot be resolved, an assessment of best interests by specialized tribunals (when available) and, ultimately, courts prevails, even when there may reasonably be scope for differing views.^5,7,32 Judges are the final arbiters of whether a parent's decisions justify intervention.

Clinicians

Overall, clinicians should aim to facilitate and enhance parents' decision-making capacity by providing the best information available about their child's condition, prognosis, recommended treatment, and alternatives and support them in discharging their responsibilities. When advising about CAM alternatives, clinicians should consider:

• whether parents propose abandoning effective conventional care and/or monitoring¹¹;

• whether providing the CAM therapy will delay imminently necessary conventional treatment¹¹;

• medical evidence about safety (risks of conventional and CAM therapies, such as invasiveness, toxicities, adverse effects, complications) and efficacy (prospects for successful treatment associated with conventional care and, if known, with CAM therapy)⁴²;

• the extent of medical support for a conventional or CAM treatment regimen (consultation with colleagues and specialists can clarify the standard of care);

• the need for bioethics consultation, which can provide important support to decision-makers; and

• compliance with applicable legislation^15,39,43 or policies about CAM use (eg, professional governing bodies^44,–,46 or health facilities⁴⁷).

Parents

• Parents of gravely ill children facing risky conventional treatment with limited or uncertain prospects of benefit must make tremendously difficult decisions about their child's best interests. They bear a heavy responsibility, and clinicians should be attentive to how best to maintain supportive relationships with parents and patients. Health facilities and clinicians should facilitate families' access to supports and resources (clinical, bioethical, and spiritual) to aid and comfort them in the decision-making process.

• Parents must comply with legal requirements that govern substitute decision-makers and should familiarize themselves with these obligations, consulting as needed. They may also be constrained by hospital policy.

• Even when using a CAM alternative, parents should ensure continued conventional monitoring and treatment, as appropriate.