It appears that I’m even further behind in my reading than Abel Pharmboy, because he pointed me to a couple of articles in an issue of the Journal of Clinical Oncology that I haven’t even cracked open yet. It’s probably still sitting in the pile of journals on my desk that haven’t been touched yet because I haven’t gotten around to them. The issue contains two articles of interest, but I think I’ll only touch on one of them for now because it’s highly relevant to my previous posts about Abraham Cherrix, the 16 year old with relapsed Hodgkin’s disease and refused additional chemotherapy in favor of quackery known as the Hoxsey treatment. Abel’s commentary was great, but you know me. I can’t resist putting my two cents in too, given how much I’ve blogged about such issues in the past. Here’s the article:
Jeffrey D. Hord, Waqas Rehman, Patricia Hannon, Lisa Anderson-Shaw, Mary Lou Schmidt (2006). Do Parents Have the Right to Refuse Standard Treatment for Their Child With Favorable-Prognosis Cancer? Ethical and Legal Concerns. J. Clin. Oncol. 24:5454-5456.
The big difference between the topic of this article and the Starchild Abraham Cherrix case is age. Cherrix is 16, and thus getting close to adulthood. Consequently, his case is more difficult because he doesn’t want chemotherapy and is less than two years from being able to do whatever he wants because he’ll be an adult. Thus, the argument regarding his case is intimately tied to whether he is competent enough to make his own medical decisions. In contrast, this article is about children that no one would consider anywhere near old enough to be able to decide their medical care, children 6, 7, 8, or 9 years old, and it particularly emphasizes the dilemma facing physicians in the case of children with good prognosis cancers, with 75-85% chances of long term survival with conventional therapy, whose parents decide to pursue quackery instead.
After a case report, the authors plunge into the bioethics of such cases. The authors describe the dilemma that occurs when parents eschew therapy with a good chance of cure for dubious alternative medicine:
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. 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. 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.
It is indeed difficult to balance respect for autonomy with beneficence in these cases, but I would argue that in these cases beneficence demands that the child be treated. I view a parents’ refusal to allow a child with a highly treatable cancer to be treated with effective therapy because they want to use woo instead as no different than the case of a bleeding child whose Jehovah’s Witness parents refuse to allow a life-saving blood transfusion. In each case, the state must step in to save the life of the child against the parents’ wishes. Remember, these are not teenagers like Abraham Cherrix. They’re not even close to that “gray zone” between ages around 15-17, where children are not yet considered legally adults but are still mature enough that we at least have to consider their wishes in how they wish to be treated.
What also interested me was the following table:
First, note the wide variety of nonstandard treatments, which range from Bible readings, chelation therapy, Laetrile, and macrobiotic diets. Second, note another thing: The only child known to have been cured of his cancer was Case 5, where standard treatment was mandated, although the outcome of one case for which chemotherapy was mandated was reported as unknown. However, this was an osteogenic sarcoma treated in 1986, when success rates for standard therapy were not as impressive as they are now. In other words, the cases reviewed are entirely consistent with what I’ve beens saying all along: This stuff doesn’t work.
Of course, one of the problems is that the majority of Americans probably don’t agree with me. There is a widespread attitude in this country that parents should have essentially absolute power and autonomy over how their children are raised. While I agree that the state should not be allowed to dictate how a parent cares of his or her child without compelling reasons to do so, I would argue that stepping in to save a child’s life from quackery is one of the few reasons that qualify as compelling. The authors seem to agree, although they are much more restrained in their conclusions that I would be (of course, an editorial on this topic by me probably wouldn’t ever be accepted for publication unless I figured out how to tone down the ol’ Respectful Insolence):
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).
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.
Indeed. The physician’s duty is primarily to the child, not to the parents. And physicians who use quackery on cancer patients, particularly for tumors for which effective conventional therapy exists, should indeed be reported to the state medical board. Unfortunately, state boards rarely do much about such reports because, as Abel rightly pointed out, courts give wide latitude to the actions of licensed physicians.