As I write this a mother and her young son are on the run – fugitives from the law. There is a nationwide manhunt focused on their capture. Federal, state and local law enforcement officials are tracking their moves, local and national news media are alerting all citizens to be on the lookout.

Just what crime has been committed by this mother and son team? Was it a bank robbery? Drug trafficking? Murder? Are they Al Queda?

None of the above – these fugitives from justice are the latest victims of medical paternalism. They are the latest in a long line and ever growing segment of our population who have had their most basic of civil liberties taken from them. Their personal autonomy in regards to what gets done to, taken from, or put into their body has been stripped by the legal system.

You see, little Daniel Hauser has Hodgkins lymphoma and his mother and father weren’t too keen on the standard medical treatment and after beginning chemotherapy decided they wanted to try something else. Brown County District Judge John Rodenberg didn't agree and ruled last week that Daniel's parents were medically neglecting him and ordered him to be evaluated by a medical physician. Colleen Hauser and her son Daniel then fled following tests that allegedly show his tumor to have grown. Rodenberg issued an arrest warrant Tuesday for Colleen Hauser, ruled her in contempt of court and also ordered that Daniel be placed in foster care and immediately evaluated by a cancer specialist for treatment.

The attorney representing Brown County Family Services James Olsen stated "We're trying to do what's right for this young man" and Daniel’s family doctor testified that he had tried to make appointments for oncologists but the family refused. Judge Rodenberg ruled that if Daniel’s outlook was good he would order chemotherapy and radiation. According to Daniel's father they just wanted to use complementary treatments in addition to the chemo and did not want to use as much chemo as the doctors ordered.

Don’t get me wrong – I don’t for a second believe there are any easy answers to this tragic twist of fate. But that’s just it isn’t it? The judge, the family doctor, the oncologists – even Sanjay Gupta, believe there is an easy answer. You see the “experts” tell us that treatment for Hodgkins lymphoma has a 90% cure rate.

But it isn’t that simple and it isn’t that simple for more reasons than one. Since the experts are quoting cure rates let's start with the concept of evidence based medicine. What repeatedly gets lost when this term is thrown around is that the evidence is only one piece of the puzzle.  As Haynes et al state: “Evidence does not make the decision, people do.”

The other equally important pieces of the puzzle include:

• Patient preferences
• Clinical state and circumstance of the patient   
• Clinical expertise of the care provider



From: Haynes, B. et al. BMJ 1998;317:273-276

What does this mean? It means that for a patient to decide (notice we run into a problem right there because it’s the patient who decides, no one else) what course they want to pursue to address their health concern they should first look to the evidence with their care providers.

Principally, the question has to be answered whether or not the evidence applies to this particular patient. To do that one needs to look at the studies and determine if the studies showing a 90% cure, for example, apply to this particular patient.

Questions such as:

• Were the study subjects of the same age, sex, weight, stage of cancer, type of cancer etc?
• What co-morbid conditions existed in the study sample? 
• How large were the studies?
• Did any subjects in the studies experience a worsening of their condition as a result of the treatment and what were the characteristics of those subjects?
• Are we talking about one study or a whole host of studies that have repeatedly found the same results?

What about long term follow-up of those children who undergo the standard medical treatment for this?  What sorts of problems do they end up with and who gets to decide whether those adverse effects are worth it? Does Daniel? His mother? The judge?  Sanjay Gupta?

And what of those who don’t go the traditional medical route – do we have any data on them? If so, what does that data tell us?  

Once these and many other questions are answered then we can begin to determine whether or not those studies and that evidence apply to our patient sitting right here in front of us. This is the step of applying the evidence to the clinical state and circumstance of the patient.

In addition to looking at the evidence one needs to look at the desires of the patient. What does the patient want to do? What about cultural issues and beliefs about disease causation and treatment? So entrenched is the pathophysiological model of disease and its resultant combatant treatment strategies in American culture that no one is even discussing this in the case of Daniel.

And the tragedy doesn’t end there. What’s going to happen if and when they catch these fugitives from justice? Daniel has stated he will resist any attempts to have chemotherapy and/or radiation forced upon him. In one interview I heard the doctor being interviewed slyly state that “they have ways around that.” I was mortified. Imagine you have just been diagnosed with the dread disease and in addition to having to deal with that you have to deal with barbaric attempts to subdue you so you will take your medicine. What sort of healing can take place under that type of psychic torture?

And what of the care providers who will administer the treatment against Daniel’s will and the will of his mother? What sort of consent issues arise? And what if it doesn’t work? Will the mother be blamed because the experts will then say had he undergone the chemotherapy sooner he would have lived?  A mother was just convicted this week in the death of her child from diabetes because she did not allow the child to have conventional medical care. Is this any different?

In all of the interviews, all of the stories, with all of the talking heads and medical experts and even Anderson Cooper – I’ve not heard one person ask whether anyone sat down with these parents and asked them what they wanted to do or what Daniel wanted to do?

Daniel did have at least one round of chemotherapy which apparently had some ill effects that led to the family questioning whether or not to move forward with it. Did anyone sit down with them and discuss options? Options on the regimen? Options on the complementary care?  Surely there had to be other options besides becoming fugitives. How caring must those encounters have been that this was the option a mother and her son chose.

I keep hearing that all these people are really just looking out for Daniel’s best interests. Well guess what folks – Daniel and his mother aren’t convinced that you really are. So who really failed here? Perhaps Anderson Cooper and Sanjay Gupta could explore that?

As I said, I don’t have the answer, and I don’t believe anyone else does either. In fact anyone who does display the arrogance of saying they know exactly what to do in this situation should scare the hell out of all of us.    

For more information on Autonomy, Consent and Medical Paternalism please see a detailed review I did that was published on this topic:

McCoy M. Autonomy, Consent and Medical Paternalism: Legal Issues in Medical Intervention. The Journal of Alternative and Complementary Medicine. July 2008, 14(6): 785-792. doi:10.1089/acm.2007.0803.

As always I look forward to your feedback, comments and suggestions.

Matthew McCoy DC, MPH
matthewmccoy@comcast.net
Editor - Journal of Pediatric, Maternal & Family Health - Chiropractic 
http://www.chiropracticpediatricresearch.net