The mother of Tinslee Lewis, a 2-year-old who’s spent most of her life at Cook Children’s Medical Center, held out hope that her daughter could live. She’d seen it in a dream, according to court documents obtained by the Fort Worth Report.
When Tinslee was born early in February 2019, a heart defect prevented her blood from moving to her lungs for oxygen. Her organs weren’t fully developed and her heart pooled with blood. For months, Tinslee’s physicians provided her with an aggressive regimen of care, but after her already tenuous health spiraled in July 2019, her treatment team decided she couldn’t be saved. Her mom, Trinity Lewis, disagreed.
In October 2019, at the request of her physicians, the hospital’s ethics committee stepped in. In a unanimous vote, the committee determined Tinslee’s life-sustaining treatment should end. Lewis filed a restraining order against the hospital, and in the months since, multiple court proceedings have kept her case afloat and Tinslee alive.
In January 2022, the 48th district court of Tarrant County will decide not only if Cook Children’s can withdraw Tinslee’s treatment but consider the constitutionality of a law called the Texas Advance Directives Act, which governs the dispute resolution process in conflicts like this one.
Hospital ethics committees play a central role in this process. Here’s what we know about these committees and the Texas law that empowers them.
How did hospital ethics committees come to be?
In the early 1960s, advances in medical care meant people with failing kidneys could receive a life-saving treatment known as dialysis. Dr. Belding Scribner, a physician in Seattle who lived on a houseboat and wore a red hat, had perfected a machine that could extend patients’ lives, and in doing so he formed an “artificial kidney center” to deliver the treatment.
It worked — almost too well. The list of people wanting the treatment grew, but the center didn’t have bandwidth for everyone.
The shortfall required a decision: Who would receive the treatment? And who wouldn’t?
Scribner partnered with the local medical society, which formed a seven-person committee of providers and community members to grapple with those questions. And they did, creating a criteria that included an assessment of a candidate’s demographic details, income and “future potential,” according to the American Medical Association’s Journal of Ethics. People called it the “God Committee.” It would be one of the first groups of its kind in the U.S.
Ethics committees like this one became more present as advances in medical care outpaced hospital resources, and as providers became “better and better at keeping people alive, even if their bodies were trying to die,” said Dr. Stuart Pickell, a physician with Texas Health Physicians Group and chair of Tarrant County Medical Society’s Ethics Consortium.
In 1992, The Joint Commission, a nonprofit that evaluates patient safety and quality of care at health care organizations around the country, began requiring hospitals seeking their accreditation to “have in place a mechanism for the consideration of ethical issues arising in the care of patients.”
By the late 1990s, more than 90% of U.S. hospitals had an ethics committee.
Who can be on a hospital ethics committee?
A hospital’s bylaws govern the creation and upkeep of the committee, so no two ethics committees are perfectly alike, according to Dr. David Capper, a physician who chairs the ethics committee for Medical City Fort Worth.
Once the bylaws establish a committee, a designated leader like the hospital’s chief of staff invites employees and community members to join. People can also ask to join the committee.
“The No. 1 criteria is that they really have an interest in what they’re doing,” Capper said, though membership requires a “degree of self-education” as well.
For Medical City Fort Worth’s committee, the education is more formal: New members receive and study a book of medical ethics and then discuss their progress with Capper. Capper himself is currently in a master’s program in biomedical ethics at Trinity International University.
No guidelines govern the composition of ethics committees in Texas. A singular hospital, however, might require a certain makeup of the committee or, at the very least, that the community participates.
The committees for Baylor Scott & White All Saints Medical Center, Medical City Fort Worth, Texas Health Harris Methodist Hospital and John Peter Smith Hospital each have chaplains, Capper said. In various seasons, he’s also seen the committees include retired medical providers, people with PhDs in ethics, community attorneys, medical residents and professors. Each committee comprises about 25 people, he said, with 12-15 people who actively and consistently participate.
“There’s anything but a singular worldview or a singular perspective that’s represented,” he said.
The ethics committees report to the hospital’s medical executive committee, a leadership board that represents the medical staff: physicians, nurse practitioners and physician assistants, who typically aren’t employees of the hospital under Texas law, Capper said.
“So the hospitals cannot have their way to tell an ethics committee what to do and how to deliberate and what conclusions to make on behalf of a patient,” he said. “The ethics committee is independent of the institution itself.”
Despite how they operate on paper, they’re still heavily represented by people who work in or have connections to the hospital, Pickell said. Hospital attorneys frequently attend committee meetings, he said, so the committees can feel like a risk management tool for the hospital.
“(Hospitals) want to help people, and that’s their underlying mission,” he said. “But they also want to make sure they don’t hurt their own institution in some way.”
He, Capper and several other physicians in the community drafted a resolution asking the Texas Medical Association to study the composition of hospital ethics committees throughout Texas and, in doing so, propose guidelines for that composition in the future. The resolution passed the association’s house of delegates and a council will begin the study this fall, Pickell said.
Pickell, who leads Tarrant County Medical Society’s Ethics Consortium, a nonpartisan body of people interested in health care and ethics, said he hopes the consortium can serve as an intermediary in the meantime, one that isn’t affiliated with area hospitals.
How do hospital ethics committees work?
Although committees differ in how they operate, generally they meet regularly — once a month, once every two months, once a quarter, etc. — and as needed when ethical conflicts arise in the hospital, Capper said.
For example, a person can request an ethics consultation during a particularly difficult case and a small group of committee members convene to offer feedback. If the case warrants further discussion, the entire committee may confer.
Members of the committee then vote on a course of action. In the committee he chairs at Medical City Fort Worth, Capper works with other members to reach a consensus.
“The idea is that, if there’s a significant dissent, there’s got to be a good reason for that dissent,” he said. “If there’s a good reason for that dissent, then we all need to listen to it again.”
“If there’s a good reason for that dissent, then we all need to listen to it again.”– Dr. David Capper, chair of Medical City Fort Worth’s ethics committee
The committee presents its recommendations to the patient’s care team, as well as any general recommendations to the medical executive committee.
“I think we have a tremendous amount of power in negotiation,” Capper said.
An ethics committee’s central, codified power, however, comes from the Texas Advance Directives Act.
What is the Texas Advance Directives Act?
In the late 1990s, Dr. Kendra Belfi was invited to help write a new law that would consolidate and clarify Texas’ legislation related to advance directives, or people’s wishes for their end-of-life care. At the time, she was a geriatrician in Fort Worth, as well as chair of the Texas Medical Association’s committee on aging and long-term care.
Years before, when Belfi was a medical resident in Dallas in the ’70s, Texas hadn’t yet passed the Natural Death Act, a 1977 law that gave people the right to choose their end-of-life care. That meant no one died without medical providers trying at least once to revive them, she said.
In the years since that act passed, the prevailing philosophical wisdom surrounding a patient’s end-of-life wishes has been that “negative rights outweigh positive rights,” Belfi said.
In other words, if a patient could benefit from but doesn’t want life-sustaining treatment, they can refuse it. However, a patient has fewer rights when it comes to seeking a life-sustaining treatment their doctors think is unreasonable. For example, she said, “I cannot demand that you give me a liver transplant if I’m not a candidate for a liver transplant.”
“I cannot demand that you give me a liver transplant if I’m not a candidate for a liver transplant.”– Dr. Kendra Belfi, retired physician who helped write the Texas Advance Directives Act
The Texas Advance Directives Act, which then-Gov. George W. Bush signed in 1999, would create a dispute resolution process to help mediate conflicts between providers and patients related to end-of-life care. The law included a “legal safe harbor” component that was the first of its kind in the country, according to a 2000 article in Baylor University Medical Center Proceedings.
If someone asks a hospital to provide life-sustaining treatment a physician thinks is inappropriate, the hospital can pursue a dispute resolution path outlined in the act, which legally protects the physician, hospital and ethics committee.
This process requires the physician to convene a meeting with the hospital ethics committee. If, after listening to the physician and patient or guardians, the committee decides the physician should stop life-sustaining treatment, the patient or guardians — with the hospital’s help — have 10 days to find another physician or hospital who will treat the patient.
After the 10 days expire, the physician may withhold life-sustaining treatment and, along with the hospital and ethics committee, not face civil liability.
“Hospitals do not enter into this process lightly,” Belfi said. “They do everything they can. Usually, before there’s a meeting which results in the 10-day rule, there’s been a long time with lots of discussions and attempts to come to some kind of agreement.”
Lewis, Tinslee’s mother, has argued that this ethics committee review process did not “provide her sufficient procedural due process,” according to court documents.
Since then, a panoply of voices have weighed in, including the Texas Catholic Conference of Bishops and the Texas Medical Association, which both support the constitutionality of the law; and the attorney general of Texas, who doesn’t — specifically when it comes to the dispute resolution process.
If the law were to be deemed unconstitutional, Belfi isn’t certain what would happen — it would depend on “how much of the law was gutted,” she said.
“All of this just makes the point that people need to talk about their health care wishes — do advance directives, etc.,” she said. “Unfortunately, that does not help us with the issue of young children.”
Alexis Allison is the health reporter at the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her by email or via Twitter. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.