Wise Child

[Guest guest]

" HSI - Jenny Thompson " <hsiresearch

HSI e-Alert - Wise Child

Tue, 06 Dec 2005 07:00:00 -0500

 

 

 

 

 

HSI e-Alert - Wise Child

 

Health Sciences Institute e-Alert

****************************************************

December 06, 2005

 

 

Dear Reader,

 

Kids today - what are they thinking?

 

According to researchers at St. Jude Children's Research Hospital,

kids come up with some pretty impressive and surprising ideas when

faced with life and death decisions about their own cancer care.

 

Pamela Hinds (the head of nursing research at St. Jude) lead a recent

study of terminally ill children. Describing the results to ABC News

she said her team was " stunned " to find that children are not only up

to the task of participating in end-of-life decisions, they're also

good at it.

 

This is in stark contrast to how it's done in Texas. Consult with

children? Not a chance. Consult with parents? Sure, as long as the

parents completely surrender their right to have any say at all in

their own child's course of treatment. Otherwise, Texas parents should

prepare to be treated like criminals.

 

-----------

Can kids participate?

-----------

 

Pamela Hinds' St. Jude team recruited twenty patients who ranged in

age from 10 to 20 (the average age of the group was 17). All of the

young subjects had advanced stages of cancer, and all of them

participated in three types of end-of-life decisions: initiation of

terminal care, agreeing to a do-not-resuscitate order, or enrollment

in a cancer drug trial.

 

Each of the subjects was interviewed one week after meeting with

parents and doctors to decide on a course of action. Eighteen patients

accurately recalled all of the treatment options available to them,

and each of the patients in this group recognized that the decision

they made would most likely result in their own death.

 

According to child developmental theories, children in this age group

should be somewhat narcissistic about their personal desires. But the

St. Jude research found that the children were primarily concerned for

others. For instance, the ABC report notes that a patient named

Samantha agreed to participate in a trial for a new drug because it

might lead to a cure for someone else. Another patient - 17-year-old

Jaleesa - also signed on for a drug trial. " I would want someone to do

the same for me, " she said.

 

Ironically, it's the prospect of death that seems to give these kids a

positive perspective. St. Jude Chaplin Lisa Anderson told ABC that the

young patients have " a very strong sense of finding meaning in this

experience. "

 

-----------

Stacking the deck

-----------

 

Imagine how comforting the feeling of support must be when a child

with a life-threatening disease participates with doctors and parents

in making treatment decisions.

 

Now imagine just the opposite. Imagine what the negative health

consequences might be if an adolescent cancer patient was given no say

at all, forcibly removed from her home and family, and given a

treatment she and her parents were adamantly opposed to.

 

That's exactly what happened to 12-year-old cancer patient Katie

Wernecke of Agua Dulce, Texas. (You can read the details about Katie's

case in the e-Alert " Heart of Texas " 10/17/05.) In October, Katie was

finally returned to her parents after months of separation. The

Wernecke's immediately took their daughter to a Kansas clinic where

she underwent intravenous vitamin C therapy.

 

Last month, the Texas Supreme Court dismissed the Wernecke's request

to absolve them from charges of medical neglect. Edward Wernecke

responded with a powerful and angry statement posted on the Wernecke's

blog (prayforkatie.blogspot.com). Written as an open letter to all

parents in Texas, it also serves as a sort of Amber Alert regarding

Texas Child Protection Services (CPS).

 

Mr. Wernecke insists that the issue put before the Texas Supreme Court

was not just an attempt to clear himself and his wife of medical

neglect charges. The larger issue is " the right of fit parents to make

the medical decisions for their children. " In chilling detail, Mr.

Wernecke describes the broad powers of CPS - powers for which he says

there is no oversight or accountability.

 

Mr. Wernecke writes: " We didn't sign anything refusing treatment. The

next thing we knew CPS was knocking on our door with two police

officers to take our daughter Katie. There was no discussion, no

hearing before a judge, nothing at all. "

 

-----------

" Just so wrong "

-----------

 

The Werneckes have accumulated more than $150,000 in legal expenses,

most of it unpaid. " Here we are with a child with cancer, " he says,

" and every dime should have went into caring for and finding a cure

for that child's cancer. "

 

Could it get any worse? It almost did, according to the Wernecke's

attorney. He told them that at one point CPS filed for complete

termination of the Wernecke's parental rights over Katie.

 

In addition to their daughter's cancer care and mounting legal and

medical bills, the Werneckes now have another concern. In the wake of

the Texas Supreme Court decision refusing to clear them of medical

neglect, Mr. Wernecke anticipates that he and his wife could be

vulnerable to prosecution if Katie dies in their care. He writes:

" This is just so wrong and just so unnecessary and just makes me sick

to my stomach. "

 

I feel sick to my stomach too when I read the St. Jude study and think

of how different this situation would be if Katie and her parents had

been allowed to participate in treatment decisions right from the

beginning.

 

An organization called Compassion Children's Foundation has set up a

special fund to help Katie's family pay medical and legal expenses:

http://www.compassionchildren.org.

 

 

 

 

 

 

To Your Good Health,

 

Jenny Thompson

 

****************************************************

 

 

 

 

Sources:

 

" End-of-Life Care Preferences of Pediatric Patients With Cancer "

Journal of Clinical Oncology, Online publication ahead of print,

9/19/05, jco.org

" Children with Cancer Can Plan Own Treatment " Nils Kongshaug, ABC

News, 11/20/05, abcnews.go.com

" Texas Supreme Court Fails to Do Their Job -- Parents Unite With One

Voice And Be Heard " Edward Wernecke, Pray for Katie blog, 11/19/05,

prayforkatie.blogspot.com

 

*********************