Pediatric Use of Complementary Therapies: Ethical and Policy Choices

"Pediatric Use of Complementary Therapies: Ethical and Policy Choices" by Cohen et al. appeared in the October issue of Pediatrics electronic pages.

Pediatric Use of Complementary Therapies: Ethical and Policy Choices"

Michael H. Cohen, JD, MBA*,{ddagger},§, Kathi J. Kemper, MD, MPH||, Laura Stevens, BA, Dean Hashimoto, JD, MD¶ and Joan Gilmour, LLB, JSD

* Division for Research and Education in Complementary and Integrative Medical Therapies, Harvard Medical School, Boston, Massachusetts
{ddagger} LLB Program, College of the Bahamas, Nassau, Bahamas
§ Institute for Integrative and Energy Medicine, Cambridge, Massachusetts
|| Department of Pediatrics, Brenner Children's Hospital, Wake Forest University School of Medicine, Winston-Salem, North Carolina
¶ Boston College School of Law, Boston, Massachusetts
# Osgoode Hall Law School, York University, Toronto, Ontario, Canada

Objective. Many pediatricians and parents are beginning to integrate use of complementary and alternative medical (CAM) therapies with conventional care. This article addresses ethical and policy issues involving parental choices of CAM therapies for their children.

Methods. We conducted a literature search to assess existing law involving parental choice of CAM therapies for their children. We also selected a convenience sample of 18 states of varying sizes and geographic locations. In each state, we inquired within the Department of Health and Human Services whether staff were aware of (1) any internal policies concerning these issues or (2) any cases in the previous 5 years in which either (a) the state initiated proceedings against parents for using CAM therapies for their children or (b) the department received telephone calls or other information reporting abuse and neglect in this domain. We asked the American Academy of Pediatrics and the leading CAM professional organizations concerning any relevant, reported cases.

Results. Of the 18 state Departments of Health and Human Services departments surveyed, 6 reported being aware of cases in the previous 5 years. Of 9 reported cases in these 6 states, 3 involved restrictive dietary practices (eg, limiting children variously to a watermelon or raw foods diet), 1 involved dietary supplements, 3 involved children with terminal cancer, and 2 involved religious practices rather than CAM per se. None of the professional organizations surveyed had initiated proceedings or received telephone calls regarding abuse or neglect concerning parental use of CAM therapies.

Conclusions. Pediatric use of CAM therapies raises complex issues. Clinicians, hospitals, state agencies, courts, and professional organizations may benefit from a policy framework to help guide decision making.

Key Words: alternative • complementary • integrative • liability • malpractice • negligence • pediatric

Abbreviations: CAM, complementary and alternative medical • DHHS, Department of Health and Human Services • AAP, American Academy of Pediatrics • USFSMB, US Federation of State Medical Boards • FDA, Food and Drug Administration • AANP, American Association of Naturopathic Physicians

Many pediatricians and parents integrate complementary and alternative medical (CAM) therapies (eg, homeopathy, acupuncture and traditional oriental medicine, chiropractic, massage therapy, herbal care) with conventional care for children who are ill. Use of CAM therapies may be particularly common among children who have chronic, recurrent, or incurable conditions; for example, roughly 20% of general clinical populations and >50% of those with chronic illnesses report using CAM therapies.1-13 However, <50% of patients or families talk with their physicians about their use of CAM therapies.14

Although some studies have suggested potential efficacy for some CAM therapies in pediatrics,15 such as use of acupuncture for patients with chronic, severe pain16; massage therapy to lower anxiety and stress hormones and improve the clinical course in infants and children with various medical conditions17,18; certain herbs for colic19; biofeedback for pain20; and homeopathic medicine to decrease the duration of acute childhood diarrhea,21 case reports have suggested that significant harm is possible from use of selected CAM therapies, most commonly reported from herbs and other dietary supplements, with rare but dramatic side effects from chiropractic.20

Increasingly, pediatricians are recognizing the need to inquire about CAM use among patients, particularly those with ongoing medical problems and those with parents/caregivers who use CAM therapies themselves.22 Previously, we reviewed clinical developments regarding pediatric use of CAM therapies and offered a framework to guide clinical advising by pediatricians.15 We also summarized legal, regulatory, and professional developments that affect pediatric integration of CAM therapies and offered a framework to help guide clinical decision making.15 This article builds on our previous work by addressing pediatric review of parental choices involving CAM therapies for their children. Such choices raise novel and significant ethical and policy concerns at the interface of medicine and personal choice.

In a recent survey of 745 pediatricians, 87% reported being asked by a patient (or parent) about 1 or more CAM therapies, and 83% desired additional information or education about CAM therapies.23 The most common patient queries (and the areas of greatest physician interest for future learning) concerned herbs such as echinacea or St Johns Wort and dietary supplements such as melatonin, fish oil, or megavitamins.23 Fewer pediatricians reported being asked recently about hypnosis, biofeedback, meditation, massage, or acupuncture.23 Most (73%) pediatricians agreed that "it is the role of pediatricians to provide patients/families with information about all potential treatment options for the patient's condition," and 54% agreed that "pediatricians should consider the use of all potential therapies, not just those of mainstream medicine, when treating patients."23

However, few (if any) state statutes specifically address either integration of CAM therapies with conventional pediatric care or use of CAM therapies as substitutes for conventional care. Statutes in every state, however, do more generally address criminal "abuse and neglect" of children.15 Neither these statutes nor regulations and many judicial opinions identify whether or when use of or reliance on CAM therapies constitutes such abuse and/or neglect.15 The most analogous cases of abuse and neglect typically involve the neglect of conventional care in favor of prayer, whereas the integration of CAM therapies into conventional care can involve inclusion of a range of CAM therapies, including those at the borderland of medicine and spirituality.15,24-26

The uncertainty surrounding parental use of CAM therapies for children would be particularly acute in cases in which their children have serious, chronic, or life-threatening diseases (eg, cerebral palsy, cancer), exactly the kinds of situations in which use of CAM therapies is most common.2-13 The lack of definitive data regarding safety and efficacy of such therapies may lead to parental choices that are different from those of clinicians, complicating communication and shared decision making or even potentially jeopardizing the therapeutic relationship.27 The problem may be compounded further when CAM therapies are used as substitutes for conventional medical therapies. Indeed, the impetus for this project was a call to one of the authors from parents whose pediatrician had threatened to initiate criminal abuse and neglect proceedings because the parents had chosen to take their seriously ill children for supplemental visits to a practitioner of traditional oriental medicine. This experience suggests that pediatricians who counsel parents concerning use of CAM therapies face complex decisions and may stand to benefit from clarification and analysis of the dilemmas involved.

We therefore decided to research how state laws and agencies handle cases of parental use of CAM therapies for their children. Our aim was to assess whether a policy framework that builds in legal and ethical safeguards to balance clinical concerns, respect for autonomous family choices, and the best interest of the child exists or could be established.

[for full text see Pediatrics online at http://pediatrics.aappublications.org.]