Doctors And Judges Shouldn’t Have More Authority Over Tinslee Lewis’ Life Than Her Mother Does

Why, now that doctors can do so much with advancements in modern medicine, are they turning their backs on the patients who need them most, and saying it’s for their own good?

A terminally ill child’s death should not be determined by a panel of doctors and a judge. Parents should have a say in the decision to maintain life-extending care. But in Texas, Fourth District Court of Appeals Chief Justice Sandee Bryan Marion went along with the determination of doctors at Cook Children’s Medical Center in Fort Worth to pull life support from 11-month-old Tinslee Lewis, despite her family’s wishes to keep her alive.

The Jan. 2 ruling was made based on arguments during a Dec. 12, 2019, hearing. Tinslee Lewis’s family intends to appeal the decision.

Tinslee was born in February 2019 with a host of medical ailments. She was premature and suffered from Ebstein’s anomaly, a serious heart defect, chronic lung disease, and high blood pressure. Tinslee has been breathing with the help of a ventilator since July, when she went into respiratory arrest, and is deeply sedated and medically paralyzed. Her mother, Trinity Lewis, maintains hope.

Doctors in Texas possess the legal right to determine when a patient’s life ends because of the Texas Advanced Directives Act, passed in 1999. The law requires that before physicians can terminate life support, an ethics or medical committee must vet their decision. The patient is informed at least 48 hours in advance about the meeting to end his life, and receives the information in writing. The patient and his family then have 10 days to transfer to a facility where he won’t be removed from life support, should he so desire.

Courts, Doctors, and Family Dispute Tinslee Lewis’ Care

After an October Ethics Committee meeting, doctors at the Cook Children’s Medical Center invoked the “10-day rule,” wherein they determined they can remove life support, regardless of what the patient’s family wants. In this case, Tinslee’s mother desperately wants her baby to live.

A temporary restraining order was filed to prohibit the removal of care, but it expired Dec. 10. The family tried to find a different facility that wouldn’t remove Tinslee from life support, but none could offer further life extension, and the case went to court for a temporary injunction hearing Dec. 12.

Typically, the process of ending life-extending care does not reach the court system. Families and doctors are usually able to come to an agreement about the best course of action, which is especially difficult for a mother to a baby who hasn’t even reached her first birthday. If the family cannot find adequate placement for their loved one, the hospital may cease life-extending care. Lewis is trying to keep Cook Children’s from terminating Tinslee’s ventilator while the mother seeks an appeal of Judge Marion’s decision.

Texas Right to Life advocates for continuing care, and Fort Worth Catholic Diocese Bishop Michael F. Olson has offered to help obtain care for Tinslee at a Catholic hospital. Texas Gov. Greg Abbott and Attorney General Ken Paxton issued a joint statement saying, “The state will continue to support Ms. Lewis’ exhaustion of all legal options to ensure that Tinslee is given every chance at life.” The AG’s office said it would ensure Tinslee’s right to life all the way to the Supreme Court.

After Marion’s ruling, the doctors released a statement that said, “Our medical judgment is that Tinslee should be allowed to pass naturally and peacefully rather than artificially kept alive by painful treatments. Even with the most extraordinary measures the medical team is taking, Tinslee continues to suffer. To keep her alive, doctors and nurses must keep her on a constant stream of painkillers, sedatives, and paralytics.”

The statement continued, “As a result, Tinslee is paralyzed at all times. She currently is suffering from severe sepsis, not uncommon when patients require deep sedation and chemical paralysis to maintain organ function. Even with medication and support, Tinslee has ‘dying events’ 2-3 times per day. When she is in distress, Tinslee crashes and aggressive medical intervention is immediately necessary, which causes even more pain.”

Tinslee Lewis Is Reminiscent of Charlie Gard

Tinslee’s mother spoke with dismay after the ruling, saying she is “heartbroken over today’s decision because the judge basically said Tinslee’s life is NOT worth living. I feel frustrated because anyone in that courtroom would want more time just like I do if Tinslee were their baby. I hope that we can keep fighting through an appeal to protect Tinslee. She deserves the right to live. Please keep praying for Tinslee and thank you for supporting us during this difficult time.”

The case is reminiscent of Charlie Gard’s story. Gard was born in the U.K. with a need for life-extending care. While his parents were hopeful and medical professionals outside the U.K. offered alternative care to that from the National Health Service, Gard’s doctors declined to let his parents take him elsewhere. While this is extreme, it is not too far on the horizon for the U.S. health care system once doctors and judges can determine a patient’s fate rather than the patient or their families.

Tinslee’s doctors argue that she is in pain and this suffering is reason enough to allow her life to end. But determining the value of a life based on the perceived suffering of that person who cannot speak, and whose family wants desperately to keep her alive, is a mistake. While older, terminally ill patients at the end of their lives have more options and have had a lifetime to decide what they would choose when the worst comes to pass, the consideration for the youngest among us must be different. Parents should be the people responsible for making those determinations, and if courts and doctors can take that power away, there are risks for all of us who enter the medical system.

Why Are Doctors Refusing Care?

Not long ago in the United States, hospitals provided no care for premature babies. “The majority of American hospitals had nothing to help them. No technology, no special skills. There was no central heat to keep them warm. Doctors would place heated bricks in cribs and cross their fingers,” said reporter Katie Thornton in an episode of “99% Invisible.”

Treatment for premature babies didn’t begin to change until a doctor in France came up with the idea to house premature babies in something like the incubators used to hatch chickens. The life-saving incubators were not even adopted in hospitals, but first featured as part of a sideshow exhibit at the Omaha World’s Fair and other fairs, hawked on the midway.

Instead of bringing preemies to hospitals, parents would bring them to the fair and hope for the best. These incubators turned out to be the most substantial treatment innovation for premature babies. It was still decades before hospitals adopted the idea and turned it into the concept of the neonatal intensive care unit, or NICU.

Why, now that doctors can do so much, are they turning their backs on the patients that need them most, and saying it’s for their own good? Is it ever compassionate to end a human life if it can be saved or extended, especially in cases where the person is not capable of consent? Tinslee’s mother is hoping for a miracle. In the absence of that, Trinity Lewis would like just a little more time with her daughter. No judge, doctor, or law should stand in the way of that.

Her mother is obviously mentally ill. What kind of sick mind could put a child through that with no hope of recovery.

As I saw and read from a statement from one of her NICU nurses saying to the effect: “even something as simple as changing her diaper or rolling her from side to side to prevent bed sores will send her into respiratory and or cardiac distress if not full out arrest, a “dying” event that happens 2-3 times a day - Tinslee crashes and aggressive medical intervention is immediately necessary (I’m guessing this means cardiac resuscitation of some type), which causes even more pain, and us administering more pain killers and sedation.”

Since her birth in February, she’s had had seven surgeries and three open heart operations so this is not a case where the doctors or the hospital haven been writing her off or refusing to care for her. But there is nothing more surgically or clinically to be done for her. She is dying and will die. The question at hand is how long to keep her on life support and enduring painful interventions before that happens.

People need to understand that there is a limit to what even our most advanced medical care can do. Some see the doctors and the hospital as heartless and the mother as heroic in her quest to keep her baby alive on life support while hoping for some sort of miracle. But I see this case as the opposite.

And this is not an issue of the cost or who is paying or going to pay for it. It is a question of medical ethics. Just because we “can” keep a person “alive” by artificial means, if that person is without question as in this case, not going to recover, should we, especially when that extension is causing even more pain than their condition or what they would experience if removed from life support? Some will say that it is the parent’s call or the families call, but the doctors also are supposed to follow a creed that says “first, do no harm”.

And to what point do we expect doctors and hospitals to follow the directives of the family against all medical advice? If Tinslee’s mom told the doctors to do another open heart surgery and the doctors said there are no more surgical procedures possible or any that would not help, that any such attempt at surgery would surely kill her but which also would cause the poor baby much pain, does that mean the doctors have to do it anyway? What if the mother insisted on herbal remedies or chakras or healing crystals or homeopathy or some voodoo exorcism rite, does the mother’s wishes get to dictate that care too?

And in this case it is not a question of maybe there is another treatment or surgery that could save her or that some other doctor or hospital could do something more or try something else, even an alternative treatment, and the hospital has been talking with the family for months over the child’s eventual outcome and working with the family for months, yes months, to find, a facility, any facility that will take her. They haven’t found any because there likely aren’t any. With her fragile condition where even moving her to change a diaper or prevent bed sores causes her to crash, how is she supposed to even be moved? And it seems that no other hospital can provide better care than this one has.

I understand the pain and the difficulty of letting go. In a span of a year and a half I sat at the beside of both of my parents as they were removed from life support.

In both cases - with my mom’s acute idiopathic pancreatitis that left her both in a coma and with cascading organ failures including both her liver and her kidney’s, intestines, stomach, the acids from her pancreas having pretty much liquefied her internal organs and the resulting sepsis having gone through her blood stream and into her brain causing irreversible brain damage, and with no hope of recovery, and with my dad who had acute bacterial pneumonia resistant to treatment and that was slowly drowning him, I knew and understood that the doctors and nurses in both cases had done everything medically and humanly possible.

In my father’s case, after 8 weeks in the ICU and on life support, unresponsive and getting worse by the day, the intubation becoming more and more difficult as they couldn’t keep up with the fluids in his lungs and one cardiac arrest and no antibiotics in their arsenal helping, I was the one to first bring up if it was time to remove the life support but it was his team of doctors at John’s Hopkins who keep saying, “lets try another antibiotic, another treatment, let’s give this a bit more time” so they were not pushing me to “pull the plug”. Until one day they called for a family meeting and went over in great detail, all that had been done or could be done and conceded that they had failed. It was the same in the case of my mother.

The doctors were baffled by my mother’s case as her pancreatitis came on so suddenly and she didn’t drink, didn’t smoke, there were no signs of cancer or gall stones – nothing in her medical history that would put her at risk. It was just as if one day her “pancreas just went crazy” as one doctor told me. But again, the doctors and the nurses in the Johns Hopkins ICU did everything they could and were so kind and compassionate and supportive and kept us informed all the long the way.

In my mom’s case after two weeks of her in the ICU, they called a family meeting and went into great detail of my mother’s condition. They told us that while it might be possible to remove her pancreas, it was unlikely as it, along with her other organs had somewhat liquefied because her pancreas was along with her stomach were pumping digestive acids into and all throughout her abdomen, and if even if they were able to remove it, she would never get off dialysis as her kidneys were no longer functioning and never would and that she would never come off of a ventilator, would for the rest of her days be on a feeding tube, and even that would be a challenge because a large part of her stomach had been damaged, that she’d have to be given insulin and monitored closely, along with a big cocktail of meds and hormones, but most of all, she would in their opinion, she’d never leave the ICU or regain consciousness and even if they did all of these things, at best she might live a few more weeks or months. They gave us, her family a choice but it was obvious to us, her family that the only real and compassionate thing to do was to remove her life support and to let her go. One of her ICU doctors at this meeting at the end, he cried and he came up to me and hugged me. I truly felt the deep compassion he had for my mother and for our family and how much he regretted that he couldn’t do more, couldn’t save her.

And FWIW my parents and my older brother were all traditionalist Catholics and very pro-life. They consulted with their traditionalist priest who agreed with the doctor’s on removing life support in both my mother’s and my father’s case. And this priest gave both my father and my mother Last Rites and they both had Catholic burials.

My dad and my brother couldn’t bear to be with my mom as she was removed from life support so I was the only one to be with her. The ICU nurse who I had by now had gotten to know quite well and had become friends with, told me they would give my mom some morphine to ease any respiratory distress she might have but warned me that it could still happen, she might gasp or convulse or appear to turn red or blue. But this was not the case. When they removed the respirator, as I was holding her hand and stroking her forehead and telling her that I loved her with all my heart, she didn’t even try to take a single breath on her own, there was no struggle or any signs of pain or of distress, she simply died in less than two minutes as evident of her cardiac monitor as it flat lined. But I would swear that in her last seconds before she flat lined, a faint smile crossed her face. I’d like to believe she was seeing the face of God.

With my dad it was a bit different but not all that much. He breathed faintly and shallowly on his own for about ten minutes but he didn’t struggle at all, it just became slower over those ten minutes and then stopped and as with my mom, I was the only one there and I held his hand tightly and told him he’d soon see my mother. He breathed but less and less and finally just stopped. And once again he seemed to smile in that last minute and to be at peace.

But this mother is unwilling to accept the truth and is desperate to see her baby live. But I would bet however that the doctors and nurse at this hospital are just as compassionate and as caring and also as truthful as my parents care givers were in my parent’s cases as they are about Tinslee.

I in my experience would like to tell this mother that letting go and being with your loved one or your child in their last very last moments can be the most life affirming and beautiful experience. That letting go and letting God takeover is sometimes the most compassionate thing we can do if we really love someone.

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