consent

The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a "cost" for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.

My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can't help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman's distrust which was fueled by - if not entirely based on - the suffering her daughter was experiencing?

It's not the best written story. As with any media account, there is trimming and fluffing. I've taken out what seems to be fluff but I can't make up for the lack of information. Still, it's the only story on this case out there at the moment. It's a tragic situation, one I can't help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I'd say inappropriately contentious encounters. I can only imagine I'd be the same way if I had a kid who was sick.

I present the information in the article as food for thought. The issue being not whether the mother's judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.

Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.

The state Department of Children and Families last August filed charges of medical neglect against the girl's mother, Kimberly Castro, and took custody of the East Hartford teenager.

Castro had disagreed with three teams of doctors who treated Chelsey for lupus.

DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children's Hospital Boston.

Doctors from Connecticut Children's Medical Center in Hartford and Yale- New Haven Children's Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.

After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor's orders. Both sides were awaiting a final ruling in the case when Chelsey died.

In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.

"I feel kind of angry that I'm not able to be with my mom right now," Chelsey said in October.

Michael Perez, Castro's court-appointed lawyer, said Chelsey was taken to Connecticut Children's Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body's organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.
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The dispute over Chelsey's care began almost six years ago, when doctors at Connecticut Children's Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body's healthy tissue.
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Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.

When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children's Medical Center. Castro transferred Chelsey to Yale-New Haven Children's Hospital. There, the doctors found that Chelsey's kidneys had failed.

They blamed the lupus, but Kimberly Castro blamed the medication.

At Castro's request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That's when Yale called DCF, accusing the mother of medical neglect.

After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey's care be transferred to Children's Hospital Boston.

But it wasn't long before the same fight Castro had at Connecticut Children's and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.

After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather's home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.
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Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.

"Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today," Perez said.
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