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Tinslee Lewis

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More thoughts on Texas Advance Directive Act

I was asked about the #BabyTinslee case and what we should do, what can we do, in the disputed cases.

We need to educate more. People don’t understand basic medical ethics in this day of “choice.”

Autonomy doesn’t supersede nonmaleficience. In other words, the First Principle of medicine, “Cure when possible, but first do no harm,” always should guide us, rather than “wants” or “choice.”

In the end, doctors are the ones actually performing the acts and we’re most likely to understand the projected outcome. We benefit from oversight by colleagues and the community, both informally and in the process prescribed by the Texas Advance Directives Act.

Some people demand that every one of these cases go to court, for “due process” and “cross examination.”

But judges and courts can’t be as knowledgeable as doctors are. Their decisions are necessarily informed by dueling (paid) lawyers and (hired) medical experts.

In all the cases that have gone to court, the family has had quite a lot of notice, but the 48 hour notice before the committee meeting is perceived as too abrupt, especially since the relationships all appear to be adversarial by that point.

(And who could get your family to a meeting in 2 days?)

The 10 days isn’t thought to be long enough to arrange a transfer, either. Again, in many of the Court cases, the attempts to find another doctor willing to accept the patient’s care has begun before the committee meeting.

Doctors acknowledge the great trust and privileges we are given by agreeing not to abandon our patients. When we have a disagreement with a patient or surrogates (usually a familymember), we accept that we must continue treatment for a period of time. But not indefinitely.

If we could get the reforms that have been attempted to lengthen the statutory timeframe (multiple times) since before 2005, the TADA would be much better. It’s still the best process we have, currently.

Doing to, not for (Baby Tinslee & TADA)

“We’re doing things to her. Not for her.” (Wini King, spokesperson for Cook’s Children’s Hospital, January 3, 2020) This may be the best description of a very sad case. 

Tinslee Lewis was born prematurely on February 1, 2019, with severe heart and lung defects. She had cardiogenic shock and was admitted to the Cardiac ICU at Cook’s Children’s Hospital immediately. ♡(See Cardiac Pathology ♡below.)

Even after three open heart surgeries, a fourth to close her sternum, a short time on ECMO (essentially, heart-lung bypass) and constant ventilator since July, of 2019, Tinslee’s enlarged heart and small, damaged lungs can’t keep up with the necessary blood circulation and exchange of oxygen and carbon dioxide, even with the assistance of multiple blood pressure medicines, diuretics and the ventilator on high, except when she’s still and quiet with the help of sedating and paralyzing drugs.


In response to a lawsuit against Cook’s Children’s Hospital,  where Tinslee has been in the CICU since birth, Tinslee’s medical records were submitted to the Court.  I’ve been able to review approximately 200 pages that are now public record, describing the constant,  repetitive interventions necessary to keep Tinslee alive on the ventilator.  

Tinslee’s doctors (and, the notes show, the nurses and staff) believe that they are being forced to cause Tinslee pain and suffering, while keeping her paralyzed and sedated. They report increasing difficulty with managing the ventilator so that her damaged heart & lungs can maintain oxygenation. She requires repetitive heart, lung and blood tests to guide adjustment of meds & treatments and has had several infections requiring treatment. In contrast to my earlier presumption, the notes in the records show that the ventilator and all its required meds and manipulations are indeed causing undesired problems, including fluid overload, infections and cardiopulmonary distress, in addition to her underlying lung disease. Even the baby’s growth, something we usually celebrate, increases her risk of cardiopulmonary insufficiency. 

Those records also contain notes from many attempts to explain and council Trinity Lewis,  Tinslee’s mother,  about her baby’s underlying problems and prognosis and the reasoning behind, in contrast to some past media reports.

Ignoring the fact that doctors, not hospitals, practice medicine in Texas, Texas Right to Life Lawyer Joe Nixon is quoted, claiming that the “hospital ” has decided to withdraw treatment. Texas Attorney General, Ken Paxton, is shown to have Tweeted that the problem is a “legal issue,” rather than an ethics and justice matter of forcing doctors (and by their orders, nurses and other staff) to cause pain and suffering for a little girl who is dying as her body fails to heal, in spite of every intervention possible.

Many people, out of compassion, object that “the family ” should decide when to withdraw life support. Yet, the family  members aren’t watching the oxygen levels drop while they rinse Tinslee’s airways with a bicarbonate solution to keep her lungs clear. And it’s certainly not the lawyers that are probing, injecting, measuring and adjusting constant, innumerable hourly interventions done to a baby who must be sedated and paralyzed to prevent cardiac and respiratory distress. 

In spite of the diligent  complicated interventions and care of the doctors and nurses at Cook’s, there have been comments in blogs and social media that the “hospital” wants to “kill” Tinslee. Startlingly,  AG Paxton called the latest Court ordered, indefinite hold on removal of life support  a “Stay,” as though the doctors, not her multiple medical problems, would kill Tinslee. He also misrepresents the process that Cook’s Children’s Hospital and Tinslee’s doctors followed,

“The statute fails to require that physicians provide an explanation of why they refused life-sustaining treatment and provide the patient’s family with adequate notice and opportunity to argue their position prior to the committee reaching a decision, effectively allowing the government to deny an individual’s right to his or her own life and to do so without due process.”

In fact, though, it is the lawyers, particularly at Texas Right to Life, who are turning a little girl’s tragedy into a continuation of their legal battle against the Texas Advance Directive Act. I’ve covered the benefits of and the struggle to improve the Act – repeatedly blocked by TRTL and their lawyers – for years on both WingRight.org and Lifeethics.org

The Act, TADA, was hammered out in 1999 by a group of stakeholders   including  patient and disability advocates, hospitals, doctors, ethicists and lawyers. Texas’ prolife organizations,  including TRTL and the organization for which I served on the Board of Directors for 15 years, Texas Alliance for Life, and for whom I wrote this essay.  

Briefly, TADA allows a balance and legal options when there’s a difference in opinion between a patient’s desire for a given treatment and the medical judgment (a combination of education, experience, and the standard of care) of the doctors who are tasked with the most difficult medical and surgical cases. 

I’ll admit that it’s my opinion – and only my opinion – that the lawyers hate that TADA provides a safe haven from lawsuits if doctors follow the law (!). I slowly came to this conclusion over the years because at virtually every Legislative hearing and stakeholders’ meeting about any changes to the Act, the lawyers bemoan the fact that doctors don’t have to go to court over each of these cases and that they face no legal penalty or “liability.” 

Poor Tinslee Lewis will most likely never leave the hospital alive. Disease and death don’t respect “due process,” but, they are predictable and an inevitable part of life. Hopefully,  we will see her mother and those who love her come to find peace with her death, celebrating the time they’ve had to be with her, especially these last 2 months. However, I fear that the lawsuits will continue for years, adding to their grief.

Edited 1/19/2020 for a typographical error: in the secondparagraph, “cardiogenic” replaced “carcinogenic.” BBN

♡Ebstein Anomaly – Cardiac Pathology 101, about as simple as I can make it (and understand,  too);

Ebstein Anomaly
(Thanks to Mayo Clinic)

Babies born with Ebstein Anomaly have a malformed right and atrium and ventricle and misplaced (tricuspid) valves between the right sided ventricle and atrium. The larger right ventricle can’t pump efficiently. 

In addition,  the blood the right ventricle tries to pump into the lungs leaks/flows/churns (risking blood clots) back into the right atrium, which grows even bigger, with even thicker walls. The ventricle also grows bigger. When the  muscle fibers of the chamber walls get stretched apart enough, they are less inefficient. (Think of two hands gripping at the fingers. The farther out the grip, palm > 1st joint  > fingertips,  the less strength and pull on the opposite hand.) (For the geeks: Frank-Starling law.

The lungs aren’t efficiently filled with blood, they don’t expand, the pressure builds up in them and efficient exchange of gasses doesn’t take place. 

In the meantime, the blood backs up in the body, the liver, kidneys and extremities & eventually the left side of the heart, which can hypertrophy , too. 

The enlarged heart puts pressure on the lungs and nearby soft tissue,  including the blood vessels coming to the heart.

The combination of leaking high pressure blood vessels and the body’s increasing fluid in order to try to pump what oxygen there is, leads to edema or swelling of the body.

Sometimes,  the fetal atrial-septal defect stays open, allowing mixing of the un-oxygenated blood from the right, with the oxygenated blood. This malfunction can help, temporarily. 

With the high pressure, poor flow, and actual physical damage due to the mass of the heart, none of the organs can function well. Increased activity, stress, and growth will increase the demand for oxygen, kidney & lung function.

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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