Schiavo story and the 16 year old with cancer in Virginia

Hello everybody!

I am sure many of the loyal Pallimed readers out there have noticed that Drew has been doing all the posting for a while. Not to worry I am okay, no bodily harm or anything. Just pretty sidetracked with the kids versus work thing! Kind of like Drew.

Anyway, there have been a lot of things I wanted to comment on, but I though I would start off with an article featured on the front page of the NYTimes on August 16th.

Headline: Husband Takes Schiavo Fight Back to Politicians

The even handed article basically talks about the grass roots effort of Michael Schiavo starting a PAC (Political Action Cmte) called TerriPAC to fundraise for politicians opposing politicians who tried to create barriers to the withdrawal of artificial nutrition for Terri Schiavo last year. Apparently Mr. Schiavo was even involved in the highly publicized Lamont-Lieberman Democratic primary race in CT supporting Mr. Lamont because Sen Lieberman had endorsed the emergency federal bill to reinsert the feeding tube.

The basic reason for accepting a donation from TerriPAC is that Mr. Schiavo is:

"...the human face of government intrusion,"

said Angie Paccione, a candidate for representative in Colorado.

The article goes on to discuss the Terri Schindler-Schiavo Foundation, founded by Terri's parents, the Schindler's. The goal of the Foundation is to

"protect the rights of the disabled, elderly, and vulnerable citizens against care rationing euthanasia and medical killing."

Well what does this have to do with the 16 year old boy in Virginia? Well if you were not watching the 24 hr news networks when this made the rounds, I will give you a brief summary. A 16 year old boy with Hodgkins Lymphoma had been through one round of chemotherapy with severe symptoms. He had a relapse of his cancer and the oncologists suggested another round of chemo. Citing the severe side effects of the first round of chemo 'that almost killed' him, the boy and his parents opted for a 'alternative' treatment of diet and herbal therapy called the Hoxsey Method at a alternative medicine center in Tijuana, Mexico. (American Cancer Society info, Wikipedia, Quackwatch info)

The oncologists and social workers reported the parents for neglect and the boy was ordered to have chemotherapy against his and his parents requests. Well eventually through appeals and this issue making its way through the media, the boy won the right to follow his alternative treatments but under the guidance of an oncologist in Mississippi with experience in alternative treatments and with the possibility of radiation treatment.

So what do these two seemingly unrelated issues have to do with each other. Well this all is about the issues of surrogate decision makers which is one of the central tenets of providing effective palliative care. Because many patients who may receive palliative care may not always be able to express their wishes, medical staff rely on the patients previously expressed verbal and written wishes as expressed by themselves or via the surrogate decision maker. Because hospice and the palliative care field have fought so long for the right to withdrawal any medical treatment even when involving a surrogate decision maker, I would be interested in the palliative care field's take on the alternative treatment case when it is also a case of right to refuse treatment, but now involving a 16 year old boy.

Would palliative care practioners have differing views is the 16 year old boy did not want any treatment any more and wanted to be allowed to die without further symptoms?

Would palliative care practioners feel the same way about refusing blood for a child of Jehovah's Witness parents?

I struggled while contemplating these issues because I have a high respect for the issue of surrogate decision maker, but also a profound respect for the science and research of mainstream medicine that alternative treatments lack.

My wife (a pediatric emergency medicine physician) and I talked about these issues for a long time without any real great answers, but I thought I would stoke the fires a little and see if there were any pearls of wisdom from the palliative care community.