May 18 2009

Medical Neglect

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Daniel Hauser is a 13 year old boy suffering from a form of blood cancer called Hodgkins lymphoma. His oncologist is recommending a standard course of chemotherapy. I do not know the clinical details of this case, but overall, with current treatments, the 5 year survival for childhood Hodgkins lymphoma is 78%.  Without treatment, Daniel’s chance of survival drops to 5%.

Despite this Daniel is refusing chemotherapy, and his family is supporting his decision. If Daniel were an adult that would be the end of the story – competent adults have the right to refuse any intervention for whatever reason they choose. But Daniel is a minor, so the state has a duty to protect him, even from his own parents and himself.

Daniel’s family are members of the Nemenhah religion, a Native American religious tradition that preaches that the journey from sick to healthy is a spiritual journey. They only use “natural” remedies and refuse modern medical intervention.  Dan Zwakman, a member of the Nemenhah religious group, is arguing that this is a case of religious freedom, saying that “our religion is our medicine.”

While the beliefs of the Nemenhah religion are in the style of Native American beliefs, the bottom line is the same as Christian Scientists or any other religion that preaches that sickness and health are a spiritual matter that should be treated spiritually, and reliance on modern medicine demonstrates a lack of faith.

The issues here are therefore well-trodden territory. Our society respects the religious freedom of adults, even if their faith leads them to refuse life-saving medical interventions. But parents are not generally allowed to refuse standard medical care for their children, regardless of the reason. This is considered criminal neglect.  In some states in the US, however, believers have managed to get laws passed which shield them from prosecution for neglect if they refuse standard medical care on behalf of their children.

My position on this is probably similar to the majority opinion – children are not yet mature enough to make life and death decisions for themselves, and parents do not have the right to condemn their own children to death or morbidity in order to serve their own religious beliefs. The state has a right and a duty to protect and care for children until they become an adult. I reject the arguments of those who claim that their freedom to practice their religion trumps the responsibility to provide basic care for children.

But this is a debate that will likely be fought over and over again.

CAM As Religion

While investigating this case I also found it interesting that there is a significant overlap between many of the claims of the Nemenhah religion and new age alternative medicine claims. Both groups (CAM advocates and advocates of religions whose faiths conflict with modern medicine) preach “health care freedom”. Of course in this context “health care freedom” serves the exact same role as  “academic freedom” to creationists – as an argument to subvert reasonable and necessary standards.

It also seems that while there are those who are sincere in their Nemenhah beliefs, others have exploited the religion simply to sell supplements or practice medicine under the cover of religion, using the “Native American” angle as a selling point. “Payments” are explicitly referred to as “donations” or “offerings” with disclaimers that the exchange of money for healing is not a commercial transaction.

The lines between religion and so-called “alternative medicine” are indeed very blurred, and increasingly so. What concerns me the most is that religious freedom is being used as a get-out-of-jail free card to avoid regulations designed to protect consumers from fraud or incompetence. Anyone now can practice medicine and sell medical products and services if they are couched in religious or even just spiritual jargon.

Regulatory agencies are caught in a bind – they are easily sapped of their confidence and enthusiasm for pursuing a case when the religion card is played. I have personally seen this myself – once regulators get a whiff of religious issues in a case they immediately back off and become reluctant to get involved. Some CAM proponents have therefore exploited this as a mechanism to shield themselves from scrutiny and regulation.

This is a conversation the public needs to have, and regulations need to catch up with reality. A reasonable balance between religious freedom and preventing exploitation and fraud needs to be accommodated.

In my opinion the case of Daniel is similar to the recent case of the 9 month-old Australian girl, Gloria Thomas, who died from untreated eczema – a severe skin condition that left her skin thin and cracked allowing her to become infected. Her father, Thomas Sam, decided to treat her exclusively with homeopathy and consulted other homeopaths and naturopaths for treatment. His faith in homeopathy lead him to watch his young daughter slowly die rather than seek conventional care.

Decision on Daniel

There is good news for Daniel Hauser, however. Recently a judge determined that his parents were guilty of medical neglect. While Daniel will not be removed form their custody, they have until May 19 to find him an oncologist and go through with standard treatment for his cancer.

The judge ruled:

“(Daniel has a) rudimentary understanding at best of the risks and benefits of chemotherapy. … he does not believe he is ill currently. The fact is that he is very ill currently.”

This affirms what I was saying above – children likely do not have a sufficient understanding of life and death medical decisions to shoulder the burden of such decisions themselves. In similar cases judges will typically make an individual decision for teenagers, rather then ruling solely based upon their age. In this case, it seems, Daniel does not understand or acknowledge his medical condition.

Daniel’s court-appointed attorney, Philip Elbert is quoted as saying:

“I feel it’s a blow to families.  It marginalizes the decisions that parents face every day in regard to their children’s medical care. It really affirms the role that big government is better at making our decisions for us.”

I know lawyers are advocates, but this is complete nonsense – the ruling does no such thing. Elbert is treating this decision in this specific case as if it is legislation making all children wards of the state for medical decisions. Rather, this and other cases amount to only the most extreme cases of medical neglect forcing the state to reluctantly step in to protect the health of the child.

Daniel’s mother, Colleen Hauser, is also quoted as saying: “My son is not in any medical danger at this point.” Given that Daniel has a potentially fatal cancer that was reduced after initial chemotherapy, but then has grown after Daniel refused further treatment, this statement is delusional. That, in my opinion, warrants the state stepping in.

In practice parents are given significant leeway in making medical decisions for their children and only the most extreme cases are brought before the courts, and even then the parents are given primary consideration.

Apparently Daniel himself is a medicine man and elder in the Nemenhah band, the primary belief of which is to treat illness with natural remedies. This is an almost complete mixture of religion and new-age alternative medicine philosophies. This is no different than treating severe eczema with homeopathy, except the “philosophy-based” medical beliefs are cloaked in religion.

I hope that Daniel lives long enough to reevaluate his decision from a more mature perspective.

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