by Craig Klugman, PhD

“You are considered sane until you disagree with the doctor” is an old adage in clinical ethics circles. We rarely question a patient’s ability to make decisions if the patient’s choice agrees with what the physician wants. I have had several cases where I’ve been asked to look at capacity issues for a patient showing signs of dementia. When I asked who consented for that patient’s procedures to that point, the response was usually, “the patient.” This incongruence seemed to escape notice. When you disagree with the physician, then questions arise about your rationality and capacity to make decisions. Disagreement is when the psychiatry consult is requested to see if you are competent and capacitated.

So what happens when a parent disagrees with the physician’s recommendation? As in most ethical issues, the answer is “it depends.” If the recommended treatment is elective, then not much might happen. If the treatment is state-mandated or a public health requirement such as a vaccination, then a child may not be able to enter a public school. If the physician suspects that an injury may have been caused by abuse and neglect, then your child may be taken away from you while an investigation is conducted.

In recent years, there have been a series of high profile cases where parents chose not to pursue chemotherapy for their children. And in return, the state has sought to force treatment on the children against their parent’s wishes. For example, in 2003 Parker Jensen in Utah was diagnosed with Ewing’s Sarcoma (a cancer usually found in bones) after having a tumor removed from his mouth. Doctors prescribed chemotherapy but the parents said no, questioning the accuracy of the cancer test and stating that the cure was worse than the disease, if he has it. Physicians notified child protective services who sought a court order for the child to be given the chemo. To preserve their decision-making capacity, the family fled the state. Mr. Jensen negotiated one-year probation for him and his wife and the agreement to go to an oncologist of their choice. With public outrage, the state backed down and a number of laws protecting parent’s rights in Utah were proposed. Parker never did get chemo and a decade later, does not have cancer.

And now history repeats itself. Sarah, an 11-year-old girl with leukemia and her Amish family fled Ohio to avoid the chemotherapy she had been receiving. The parents chose to stop the treatment because of how sick the chemotherapy was making her and instead chose to try natural therapies. The hospital believes that the cancer is fatal without treatment and they have a moral obligation to make sure the girl receives chemotherapy. Thus, Akron Children’s Hospital took the family. The court appointed a guardian—Maria Schimer, a registered nurse—to make medical decisions for Sarah after ruling that the religious convictions of the parents do not outweigh the rights of the state to protect the child. Last week, the guardian ceased efforts to force chemotherapy on Sarah. The family states that their resistance to chemo is not based in religious belief but in how sick it was making their daughter.

In both cases, the medical establishment said that without treatment, the patient would die. This presumes that death from a natural disease is a bad that must be fought against. Even more important, it presumes that not fighting against the possibility of death is wrong. What if the parents had said they prefer hospice care to continued invasive treatment? Does the right to refuse treatment end with the individual alone? That is, can only the person who is not to receive treatment make that choice. Then a parent could not make a refusal choice for a child. If that is true, then a medical power of attorney should not be permitted to make refusal choices for their wards either. The law wants to have it both ways with only the legal line of age of majority separating the two. Yet there are many 15-year-olds who are a lot more mature than some 40-year-olds. Perhaps, no one should be permitted to make this choice to refuse treatment? That seems to be the message in these cases.

The physicians, hospitals and even states seem to believe that the Jensens were wrong because they did not believe the accuracy of the diagnosis and Sarah’s parents were wrong because they were more concerned with their daughter’s immediate rather than long term health. Can a parent choose dying over medical treatment for a child? The answer again is it depends. In both of these cases, the families were viewed in the media as out of the mainstream: an Amish family in one case and a Latter-Day Saint in the other. Although religion was not a cause cited by any of the parents, it was the message replicated in the media. It becomes easier to distance ourselves from a case when the people involved are castigated as being “unlike us.” The reality is that this could have been any family.

The state held that its interest in the welfare of the child was more important than the parent’s right to make choices for their children. In other words, the state said that the parents were wrong for disagreeing with the doctors. Such disagreement basically rose to the level of being considered child abuse. Child abuse is defined in the Oxford English Dictionary as “maltreatment of a child, esp. by beating, sexual interference, or neglect.” Those elements were certainly lacking in this case. In fact, Sarah’s parents were trying to save her from what they saw as intentional harm to their child. This creates a chilling environment for all parents. Doing anything less than everything for a child facing a potentially deadly disease is abuse. Following the faith and reason in which you have raised your children may be abuse. Disagreeing with the doctor is reason enough to have your parental rights curtailed.

With adults, there would be little question that a person of sound mind has the right to make his or her own end-of-life medical issues. For patients who lack capacity or competency to make decisions, a surrogate decision-maker makes those choices. Children by definition lack legal competency to make their own choices. Thus, a parent or guardian who presumably has the child’s best interest at heart makes surrogate choices. The line between parent’s right and state interests has always been when the child’s health and welfare are at risk. Did Sarah’s parents or the Jensen’s not care about their children? Did they take efforts to harm their kids? The answer is no. These parents took every effort to protect their children from what they saw as an obtrusive medical establishment and a state overreaching its authority.

Another mantra in medicine is to always err on the side of life. The child, this argument states, may have different believes and values than the parents and should be permitted to grow up and make their own choices. But if the child can’t grow up, then the child never has the chance to decide his/her beliefs. Therefore, all efforts must be made to let the child grow up which requires forcing on the child what the state and medicine consider to be the best treatment and requires an all out war against death. In other words, if you believe and act differently, be prepared to risk your right to choose for your child.

I am not suggesting that we need to acquiesce to every decision a parent makes. Certainly education, discussion, and even influence are important parts of both medical care and public health practice. And child abuse is a very real threat. What I am suggesting is that it is too easy to paint a family as “the other” or “not like us” when they choose differently than medicine and the state feels they should. If every child with cancer is required to get treatment, then pass a law and make it the case. But as long as we continue with the pretense that parent’s can make decisions for their children, then society may disagree with some of those choice but should only step in when a real danger exists. And choosing not-to-treat does not always equal abuse.