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Cook’s Children’s Press Release on Tinslee Lewis

The Press Release is published in .pdf on the hospital’s website. Here’s the text:

Cook Children’s Statement Regarding Patient Tinslee Lewis Fort Worth, Texas (November 10, 2019) –

Tinslee Lewis is a beautiful baby who has captured the hearts of many at Cook Children’s since her premature birth nine months ago. She was born with a rare heart defect called an Ebstein’s anomaly and has undergone several complex surgeries at Cook Children’s in an effort to improve her heart function. Further complicating matters, she also suffers from chronic lung disease and severe chronic pulmonary hypertension. Due to these complications, she has spent her entire life hospitalized in Cook Children’s intensive care unit. She has required artificial respiratory support throughout that time, and has been consistently on a ventilator since July.

In the last several months, it’s become apparent her health will never improve. Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated. Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.

To maintain the delicate balance necessary to sustain Tinslee’s life, and to prevent her from pulling out the lines that are connected to the ventilator, doctors have had to keep her constantly paralyzed and sedated. While Tinslee may sometimes appear alert and moving, her movements are the result of being weaned off of the paralyzing drugs. We believe Tinslee is reacting in pain when she’s not sedated and paralyzed.

Cook Children’s has made heroic efforts to treat Tinslee’s condition, all while being very transparent with her family regarding her poor prognosis. Despite those extraordinary efforts, Tinslee’s condition has not improved. At the request of Tinslee’s family, we have reached out to nearly 20 facilities across the country to see if any would be willing to accept Tinslee as a patient. Some of the facilities include:

 Texas Children’s  Children’s Memorial Hermann Hospital  Dell Children’s  Dallas Children’s  Medical City Dallas  Children’s Medical Center Oklahoma City  Children’s Hospital of Atlanta  St. Louis Children’s  Children’s Hospital of Philadelphia  Johns Hopkins  Methodist Hospital San Antonio  University Hospital San Antonio  Boston Children’s  Children’s Hospital of Los Angeles  Arkansas Children’s  C.S. Mott Children’s Michigan  LeBonheur Children’s Memphis  Rady Children’s  Children’s Hospital San Antonio CHRISTUS

All have said our assessment is correct and they feel there is nothing more they can provide to help improve this precious child’s life.

A team of Cook Children’s doctors nurses and staff have given their all to help Tinslee. While, we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain. Removing this beautiful child from mechanical ventilation is a gutwrenching decision for Cook Children’s physicians and staff, however we feel it is in her best interest to free her from artificial, medical intervention and suffering.

Winifred King

Assistant Vice President of Public Relations Cook Children’s Health Care System

Baby Tinslee Lewis and the Texas Advance Directive Act

I was a relieved to hear that the doctors caring for 9 month old Tinslee Lewis decided not to remove her ventilator on Sunday, November 10, 2019. Their decision, most likely due to public outcry, was announced 2 hours before removal was planned. Later in the day, and a local judge issued a restraining order that mandates continuing the ventilator until at least November 22 unless an appropriate transfer to another facility can be arranged.

At first glance, this sounds like several other stories about disputes between the family of a patient and medical professionals who have invoked the provision in the Texas Advance Directives Act(TADA) that allows for removal of life sustaining treatment. However, from what I’ve read and the hospital’s statement, I’m concerned that this time the law may have been invoked based on “quality of life” rather than the futility of the treatment and the suffering it causes.

(Note: I want to be very careful to point out my limits. The following medical and legal information about this case comes from what I’ve gleaned from Facebook, blogs and Twitter posts, as well as a few news articles like this one. I’ve tried to be as factual and accurate as possible. It’s important to understand that I don’t know all the details and that any conclusions I draw are merely my opinion.)

Tinslee has lived her whole life in the ICU at Fort Worth Cook’s Children’s Hospital. She was premature and was diagnosed with a congenital heart defect, Epstein’s anomaly, that in spite of several surgeries led to heart failure and caused her heart to become so enlarged that it damaged her lungs. She’s been on a ventilator since July.

Her doctor or doctors reportedly believe that Tinslee is in pain and suffering. In order to keep her comfortable and to prevent her pulling the ventilator and feeding tubes, they must use paralyzing drugs and sedation. An attending doctor responsible for Tinslee’s care invoked TADA and a hospital committee agreed that the continued use of the ventilator is inappropriate. On October 31, the family was notified that the ventilator would be discontinued at 5 PM on November 10.

I became concerned when I saw the video posted at Texas Right to Life, showing a beautiful girl with apparently healthy skin, reacting to voice and touch. In the video, she doesn’t move her right leg, barely opens eyes and only seems to point her eyes to lower right. Still, the treatments, including sedation, seem to be working and she doesn’t appear to be in distress or pain.

A hospital spokesperson, Winifred King, assistant vice president of public relations for Cook Children’s Health Care System, sent out a statement by email, that is quoted in part by the Fort Worth Star Telegram:

“In the last several months, it’s become apparent her health will never improve,” King said in a statement via email. “Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated. Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.”

And,

“While we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain,” said Winifred King, assistant vice president of public relations for Cook Children’s Health Care System, in a statement. “Removing this beautiful child from mechanical ventilation is a gut-wrenching decision for Cook Children’s physicians and staff; however, we feel it is in her best interest to free her from artificial, medical intervention and suffering.”

(Kaley Johnson, Fort Worth Star Telegram https://www.star-telegram.com/news/local/fort-worth/article237223826.html accessed 11/10/19)

Hesitantly, I find myself second guessing the decision of Tinslee’s doctor(s) to invoke TADA and of the hospital ethics committee to affirm that the ventilator is inappropriate medical care. As I wrote above, I can’t know the real medical circumstances and certainly haven’t examined Tinslee or even read her chart. I’m not a pediatric cardiologist or pulmonologist and may not understand her prognosis as she grows and develops. Has she required chest tubes because of the ventilator? Is she growing? Will a larger body put too much strain on her heart or will growth allow time – and room – for her lungs to heal? Will she be able to have a tracheostomy and would it make her care easier and her more comfortable?

However, there’s no sign that the ventilator itself is causing damage to her lungs and there is evidence that the medication helps Tinslee tolerate the mechanical intervention.

The wording of Ms. King’s statement makes it appear that the doctor(s) decided to end the ventilator treatment based on a perception of her quality of life, rather than on their knowledge of the futility of the treatment and the damage it causes. In my opinion, “quality of life” is a very personal value judgement. As I’ve noted before,

“Although no reason is required by law, in every case I know of the doctor has made it clear that the requested treatment is causing suffering and/or actual harm and violates the First Principle: “Cure when possible, but first, do no harm.”’

The good news is that TADA allows, and Tinslee’s family were able to, access practical and legal assistance.

Ms. King shared a list of 19 hospitals that, as required by TADA, the hospital administration has contacted in an attempt to find other doctors and facilities that will accept Tinslee as a patient. All refused the transfer, apparently agreeing with Tinslee’s doctor (and casting doubt on my conclusion).

TADA also allows the family to seek a delay through the local courts. Texas Right to Life helped Tinslee’s family by providing a lawyer and legal advice. They also sent out a plea on Friday, November 8, asking the public to call and email Cook’s administrators about Tinslee. Several State legislators have also become involved.

Now, Tinslee’s mother and family and the hospital will have another 12 days to try to find someone willing and able to treat her.

Questions still remain: Is there any long term facility that is able to offer the ventilator and sedation that Tinslee needs? Or must Tinslee live sedated and paralyzed in the ICU for the rest of her life?

But there shouldn’t be any question weighing whether Tinslee’s “quality of life” is worth living.

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