Doctors vs. Parents: Who Decides Right to Life?

From Houston Press:

Following surgery, Sabrina Martin's condition went south. And then, her family
says, Children's Memorial Hermann Hospital set about arranging for her
demise.

...The doctor told us that Sabrina'd had two strokes and because of
them, she was in a coma that they didn't think she was going to come out of. And
if she did, she would be a vegetable."

As shocking as the devastating news of their daughter's condition was, Lopez and Murray say it would not compare to what happened next.

Within about three days of the second surgery, Lopez says, doctors "started talking about our options. And we started getting scared, because the options were not good."

Lopez and Murray say that doctors and hospital staff began pressuring them to withhold treatment and feeding, which would ultimately starve Sabrina to death. To the parents, this was unacceptable. They wanted their daughter to live.

"I was very disappointed with the way Memorial Hermann handled things," Lopez says. "They put it out on the table that we were being selfish."

Murray and Lopez accuse the hospital staff, doctors and nurses of doing everything they could to try to end Sabrina's life during the ensuing six weeks, including:

• Refusing to implement simple procedures such as giving Sabrina feeding and breathing tubes that would have enabled the parents to take their daughter home and care for her themselves,

• Attempting to turn relatives and friends against Lopez and Murray by encouraging
them to persuade the parents to withhold treatment, all the while violating
federal privacy laws by discussing Sabrina's healthcare information,

• Entering two separate do-not-­resuscitate orders against her parents'
wishes, and

• Threatening the family with convening the hospital's ethics committee, which under Texas law can overrule the family's wishes and withhold life-support treatment from a patient.

As Lopez and Murray saw it, the hospital and physicians that caused their daughter's condition were now trying to end her life. And it seemed like there was nothing they could do to stop it.

Terrified, Sabrina's parents called the nonprofit organization Texas Right
to Life, which referred Lopez and Murray to an attorney. The parents were able
to transfer Sabrina to Texas Children's Hospital, where Lopez says Martin
received treatment that doctors at Memorial Hermann had refused to give,
treatment that saved her life...

...When asked for comment about Sabrina's case, Memorial Hermann spokeswoman Beth Sartori issued a statement saying, "Sabrina Martin's story is a sad one, and everyone associated with her care at Children's Memorial Hermann Hospital is deeply sympathetic to her and her family. However, because of the lawsuit against the hospital and the physicians that cared for her, we are not at liberty to comment further."...

...Memorial Hermann was one of a host of hospitals across the state that along with doctors and right-to-life groups endorsed the Texas Advance Directives Act, which the Legislature passed in 1999 and which was signed into law by then-Governor George W. Bush. (The right-to-life groups have now backed off their support of the
Advance Directives Act and say the law is unfair and gives too much power to
­doctors.)

In essence, the law gives doctors the ability to eithercontinue or withhold life-sustaining treatment against the wishes of the patient or the patient's legal guardian. To do so, the doctor presents his case before the family and an ethics committee, and if the committee agrees with the doctor's decision, the family is given ten days to find another facility that will comply with their wishes before treatment is either continued or withdrawn. Families are given a list of lawyers and organizations to help facilitate a transfer.

Texas and Virginia are the only two states in the country that have a time limit as part of such laws, Virginia's being 14 days for the family to find a transfer.

In Texas, the law has come under fire over the past several years. Families, their lawyers and right-to-life groups have battled doctors and health care facilities in the media and in court to try to prevent them from employing the act. In 2007, an attempt to lengthen the ten-day time period died in the Texas House of ­Representatives.

In general, opponents — ranging from rightwing, right-to-life groups all the way to the American Civil Liberties Union — say the law gives too much power to the
hospitals and doctors and takes away individuals' civil rights to determine
their own fate...

...Graham says another disturbing pattern she sees at Memorial Hermann is doctors entering orders not to resuscitate patients without first checking with or gaining consent from the families.

"It's a totally separate mechanism that accomplishes the same goal," says Graham, "but much quicker."

In Sabrina's case, doctors entered two orders not to resuscitate the teen, according to Sabrina's medical records...

...Three days after Sabrina's second surgery, one of her doctors entered an order not to resuscitate her, says Painter. Lopez and Murray had no idea he had done so. They say they did not want the order put in. According to hospital records, the same day that the instruction was entered, a social worker documented that it "appeared (Lopez and Murray) did not agree with the recommendations for DNR as of yet."

Then, two days later, a different doctor issued a second order not to resuscitate
Sabrina, the very day that hospital records show Lopez had requested a second
opinion from another neurologist.

"I felt so violated," says Lopez. "I couldn't believe they would do this. I mean, we're talking about a hospital; they're supposed to have the patient's best interest, and this was way too soon to be giving up."

Lopez was further dumbfounded when doctors refused to insert a feeding pipe, called a G-Tube, or perform a simple tracheotomy, placing a breathing tube into Sabrina's neck, allowing her to leave the hospital so that Lopez could care for her daughter at home.

"They never proposed the G-Tube and trach," says Lopez. "I researched the options and said we wanted that. But Memorial Hermann wouldn't do it, saying she wouldn't have a high quality of life. And I was very disappointed because I was like, 'How do you define quality of life?' She doesn't need to play basketball as long as she can understand what we're saying."...

...Shortly after transferring to Texas Children's Hospital,
Sabrina began to improve so dramatically that doctors recommended she not go
home but rather be moved to a rehabilitation facility in San Antonio. There, at
Kindred Hospital, Sabrina emerged from her coma. Doctors were able to remove her
breathing tube and Sabrina began getting better, even advancing to the point
where she was able to help her younger sister do math homework by counting on
her fingers. Doctors now say Sabrina should have a full life expectancy.

"The people at Memorial Hermann said this would never happen," says
Lopez...

..."I'm so glad we did what we did," says Murray. "It's a lot of
work. But it's better now than it was at first. Some days I just want to go up
to those doctors and say, "See, look at her now."

Why A wheelchair Is Not Purgatory

By Ruth at her blog, Wheelie Catholic:

WHEELIE CATHOLIC: Why my wheelchair is not my purgatory

I awoke this morning to an
MSNBC article about the efforts of one man to walk again after acquiring a
spinal cord injury.

The article began with the words "It was only a chair, but it became his
purgatory".

Make no mistake about this: I applaud the efforts and hard work of the
individual in question. That's not at issue here, of course.

But to write an article saying that this man could have no life until he
walked again is inaccurate. To write that a wheelchair is someone's purgatory
(not a quote from the interviewed person) needs to be addressed. Why?

Because more damage is done to the perception of disability over bowls of
Cheerio due to media coverage than anywhere else. Not only that, but this
article ignores several facts that are well known in the spinal cord
community.

Read the rest over at Wheelie Catholic.

Alaska Governor Balances Newborn's Needs, Official Duties

From the Associated Press, via Yahoo news: Alaska governor balances newborn's needs, official duties

The doctor's announcement in December, when Palin was four months pregnant,
presented her with a possible life- and career-changing development.

"I've never had problems with my other pregnancies, so I was shocked,"
said Palin, a mother of four other children.

"It took a while to open up the book that the doctor gave me about
children with Down syndrome, and a while to log on to the Web site and start
reading facts about the situation."

The 44-year-old governor waited a few days before telling her husband,
Todd, who was out of town, so she could understand what was ahead for
them.

Once her husband got the news, he told her: "We shouldn't be asking,
'Why us?' We should be saying, 'Well, why not us?'"

There was never any doubt the Palins would have the child, and on April
18 she gave birth to Trig Paxson Van Palin.

"We've both been very vocal about being pro-life," Palin said. "We
understand that every innocent life has wonderful potential."

This is a big deal these days when a large majority of of those pregnent with chldren with Down syndrome choose abortion.

Jesus as Adaptive Equipment?

I heard the phrase, 'just a crutch', used in a song this morning, and I cringed.

I do not like the phrase 'just a crutch'. A crutch is a good thing! Literally speaking, without crutches, people who have difficulty walking would be left crawling on the ground or left to sit on the sidelines. 'Just a crutch' is yet another term that tempts those with physical disabilities to feel different than others, prejudged, and overlooked.

Spiritually speaking, I feel offended by that term, as it is used to describe everything from religion to addictions, etc, in criticism that those who depend on things like that should instead pull themselves up by their bootstraps and stand on their own, in endorsement of that wonderful ideology of self-sufficiency. However, those of us who utilize 'crutches' such as the above do so because we can't stand on our own. We need something to help us walk. We just need to learn to use the right kind of crutch.

The crutch of religion or addiction must be laid down, not so we can because more self-reliant but so we can become more dependent on Jesus.

Oh, my goodness, I'm actually going to say it- Jesus is my crutch, my walker, my wheelchair, and my gurney. Ah, that's too cheesy to post. :-D

Court Denies Bid to Sterilize Woman

From the Chicago Tribune:

Disability rights advocates and medical ethicists praised a precedent-setting
ruling Friday by the Illinois Appellate Court denying a bid to sterilize a
mentally disabled woman against her will...

..."Tubal ligation is a particularly drastic means of preventing a mentally
incompetent ward from becoming pregnant," Judge Joseph Gordon wrote in the
36-page opinion. There are "less intrusive and less psychologically harmful
[birth-control] alternatives."...

..."It's extraordinarily significant" because it guarantees the disabled a
court hearing, said Katie Watson, aNorthwestern University professor who wrote a friend-of-the-court brief in the case on behalf of about two dozen medical ethicists."

"In the past, this was a decision that could be made between a guardian and a
doctor," she said. "The decision must be moved into the light."

The ruling means a guardian must go through some "significant legal hoops"
before a court will order sterilization, said the woman's attorney, John
Whitcomb of Equip for Equality, a disability rights group.

The Christian Institute on DIsability

Officials Want to Overturn State's Group-Home Laws

Yes, it really happens. People with developmental disabilities experience housing discrimination.

Here's what's happening in Cicero, New York.

From Central New York News at syracuse.com:

Cicero Town Councilor Jim Corl and Town Supervisor Chet Dudzinski are calling for the state legislature to repeal a mental hygiene law that requires people with developmental disabilities who want to move into a neighborhood to seek town board approval....

...At the required public hearing, several neighbors of the proposed site objected, saying that having such a group home in their neighborhood would increase traffic, decrease home values and force them to keep a closer eye on their children.

And News 10 Now:

CICERO, N.Y. - Is a thirty-year-old state law discriminating against people with developmental disabilities? The Cicero Town Board thinks so. Their actions come on the heels of strong neighborhood opposition to a brand new neighborhood group home.

It would be along Snowshoe Trail. A home, established by Community Options Incorporated, for three men with developmental disabilities. The deal is as good as done. But not without concern.

"With all the kids around, can we trust these people coming in and out? Nurses, aides, therapists. Everyone is just going to be coming in and out. Increased traffic. It's just, it's not a good placement for this," said Karen Florczykowski, a Showshoe Trail resident.

Some neighbors share her sentiment. And some don't.