‘Is Tinslee’s case hopeless?’ Debate over baby on life support continues at hearing.
A judge ruled Thursday that a temporary restraining order will continue until Jan. 2 while she decides whether a Texas law that allows hospitals to remove patients from life support is constitutional.
The ruling comes after a months-long legal battle between Cook Children’s Medical Center and the family of Tinslee Lewis.
The family of the 10-month-old baby girl argued against Cook Children’s on Thursday at a hearing to determine whether the hospital will be permitted to take the baby off life support.
At the center of the legal battle over Tinslee’s life is the controversial Texas Advance Directives Act — Texas Health & Safety Code 166.046 — that physicians can use to end a patient’s care they determine is futile, even if the family disagrees.
“We’re here to determine whether 046 is unconstitutional,” Texas Fourth District Court of Appeals Chief Justice Sandee B. Marion said at the beginning of the hearing Thursday in the 48th District Court in Fort Worth.
Tinslee was born prematurely with a rare heart defect called an Ebstein anomaly. She also suffers from a chronic lung disease and severe chronic pulmonary hypertension, and has undergone several complex surgeries.
She breathes with the assistance of a ventilator and is sedated but conscious, the family says, and responds to touch and stimulation as any baby would.
Cook Children’s officials said they believe Tinslee is in pain and nothing more can be done for her medically. The hospital has reached out to at least 19 other facilities to potentially transfer Tinslee, but said each facility agreed with Cook Children’s diagnosis.
However, Tinslee’s family believes she needs more time to get better, and they think she will. Their lawyer said Boston Children’s Hospital is re-considering its initial decision to not take over Tinslee’s care — he said Tinslee still might be able to transfer to that hospital.
On Thursday, 20-year-old Trinity Lewis, Tinslee’s mother, took the witness stand and talked about her daughter.
She described her “sassy” personality and said she likes having her nails painted and her hair washed, but squirms away when someone tries to do her hair. Her favorite movie is “Trolls,” Lewis said; the 10-month-old cries when the movie ends.
“I want to be able to make the decision for her,” Lewis said while on the stand.
Lewis is also pregnant with her second child — the baby is due in February.
Linda Williams, Trinity’s grandmother, said the family is grateful for all that Cook Children’s has done for Tinslee, but they are not going to give up hope for her.
“I wish they would keep that hopelessness out of their vocabulary,” she said. “There is hope for her. I don’t believe there is such thing as hopelessness.”
Tinslee’s medical treatment
Three Cook Children’s employees and advocates from a nonprofit organization also testified Thursday.
The family’s attorney, Joe Nixon, and two of Cook Children’s attorneys, Tom Walsh and Geoffrey Harper, questioned witnesses at the hearing.
Dr. Pam Foster, director of pastoral care, is the chair of the ethics committee that decided to end Tinslee’s care.
On the stand, Foster explained the process the hospital went through to decide to end Tinslee’s treatment. Jay Duncan, a pediatric cardiologist at Cook Children’s, went to Foster and said there was an impasse between physicians and Tinslee’s family about the infant’s care.
Foster called for the 25-person ethics committee to meet about the case. On Oct. 30, the 22 members at the meeting all voted to end Tinslee’s treatment, Foster said.
Duncan also took the stand and answered questions about Tinslee’s medical conditions and treatment. He explained her various conditions are incurable and will eventually kill her. He said her current treatment is prolonging her suffering.
“At some point, we’re not doing it for her,” Duncan said. “We’re doing it to her.”
“Is Tinslee’s case hopeless?” Nixon asked him.
“Yes,” Duncan said.
Duncan said he and other doctors talked to Lewis many times about Tinslee’s condition and told her Tinslee would not get better. Lewis told Duncan if God wanted Tinslee to die, she would be dead, he said.
Duncan explained taking Tinslee off life support would be “a very peaceful process.” As he explained how doctors would remove all devices and Tinslee would stop breathing, Tinslee’s grandmother left the courtroom crying.
On the stand, cardiac nurse Kara Lane said caring for Tinslee is “very emotionally difficult for myself and for the nursing staff.”
When asked why, she said because “we are inflicting painful interventions on her that are increasing her suffering for no good outcome.”
Lane also said Cook’s Children’s ICU has set up special systems because of Tinslee’s treatment. Nurses are given advance notice if they are scheduled to work with Tinslee, and they are given the option to choose not to do so because “there are many nurses that are not comfortable inflicting that kind of pain on her.”
Potential transfer
Tinslee’s family and Cook Children’s have reached out to dozens of facilities to see if they would take over Tinslee’s case, but have not found one that said yes.
During cross-examination, Duncan said Boston Children’s Hospital requested for Cook Children’s to perform additional tests on Tinslee after they originally declined to take over her care.
Nixon said that meant Boston Children’s Hospital was still considering taking over Tinslee’s care.
Nixon also asked Duncan, “Who gets to decide the fate of Tinslee? You or her mother?”
“I believe in situations like this, there is a partnership,” Duncan replied. “I believe that as Tinslee’s physician, my goal is to alleviate her pain and suffering, and when that can’t be reached, that’s when we involve someone else.”
Nixon pressed on.
“In this situation, who gets to make the decision whether Tinslee lives or dies, you or her mother?” he asked.
“Well, in this situation, the ethics committee decides,” Duncan said.
Hannah Metah, executive director of Protect Texas’ Fragile Kids, spoke as the next witness in the hearing. The group advocates for medically dependent children in the state.
Metah said the group has been talking with physicians and specialists, some of whom requested more recent tests and records from Tinslee. One of those tests was done as recently as Monday, she said.
Metah also said the hospital should allow Tinslee to be discharged for home care.
However, Duncan said in his testimony it is not safe for Tinslee to receive care from a home-care nurse because her condition and care are so complicated.
Two other women with Protect Texas’ Fragile Kids gave testimony at the hearing. They shared their personal stories of having children with severe medical conditions who survived despite seemingly hopeless diagnoses.
The ruling
Judge Marion said she will make a decision in the case on or before Jan. 2.
Cook Children’s agreed that once the judge makes a decision, the hospital will give the family an additional seven days to potentially find another hospital to transfer Tinslee to.
During closing arguments, Nixon argued the Texas Advance Directives law bypasses due process by protecting doctors from lawsuits over the law’s usage.
Harper said the law allows medical professionals to follow their oath to “do no harm.”
“It’s not just that she’s in pain, it’s that we’re causing it,” he said.
After the hearing, Lewis said she was grateful for the extension and is hopeful they will find another facility.
“This isn’t Tinslee’s first rodeo, and she’s made it this far,” she said. “I know she’s going to continue to fight for her life.”
In regards to the Texas Advance Directives Act, Lewis said she did not think the law was fair.
“I don’t feel as if it is their right to take somebody’s life because they want to stop treatment,” she said.
Winifred King, assistant vice president of public relations for Cook Children’s Health Care System, also spoke after the hearing. She said the hospital will continue providing Tinslee with “the same amount of high-level care we’ve been giving her for the 10 months she been at our hospital.”
“This is hard. It is hard for everyone involved,” she said.
King said their immediate concern is Tinslee’s comfort.
“She’s suffering. She’s in pain,” King said. “We want the absolute best for Tinslee.”
An official from the Texas Attorney General’s office spoke at the hearing as well, saying the Attorney General’s Office agrees the statute violates due process. In November, Attorney General Ken Paxton filed a brief in support of Tinslee and argued that the statute is unconstitutional.
Legal battle
The following is a timeline of the legal battle between Cook Children’s and Tinslee’s family:
▪ Oct.: Cook Children’s officials tell Trinity Lewis, Tinslee’s mother, they are planning an Ethics Committee meeting about Tinslee’s treatment
▪ Oct. 30: The committee makes an unanimous decision to end Tinslee’s treatment.
▪ Oct. 31: The committee gives Trinity Lewis a letter saying treatment for Tinslee will end in 10 days.
▪ Nov. 10: Joe Nixon, the Lewis family’s attorney, files for a temporary restraining order against the hospital. Judge Alex Kim grants the order, which is set to expire on Nov. 22.
▪ Nov. 19: Kim extends the restraining order to Dec. 10.
▪ Nov. 20: Cook Children’s files a motion to have Kim recused from the case, saying he is biased and violated legal procedure by assigning himself the case.
▪ Dec. 4: Judge Kim is recused from the case at a hearing.
▪ Dec. 10: A temporary injunction hearing is set for Dec. 12. under Chief Justice Sandee B. Marion of the Fourth District Court of Appeals.
▪ Dec. 12: The temporary injunction hearing takes place.
This story was originally published December 12, 2019 at 6:24 PM.
