In Texas, a Hospital Ethics Panel - Not the Patient or Family - Decides Whether to End Care
She closes her eyes for only a second, but when Evelyn Kelly wakes up, doctors surround her son’s hospital bed at Houston Methodist, and J. Richard Cheney, the Houston Methodist Bioethics Committee chairman, looms over her, holding out an envelope.
Kelly had been sitting alongside her son, David Chris Dunn, for hours every day since he entered Houston Methodist on October 12, transferred from Bayshore Medical Center in Pasadena. He’d been intubated for more than a month, and the doctors had kept him sedated so he wouldn’t disturb the tube in his throat. Dunn can’t respond, but he follows his mother’s movements with his eyes.
Kelly stares at Cheney. He quickly delivers news no one likes to give: The doctors have held a meeting and decided it’s time to end Dunn’s medical care. The hospital ethics committee will meet in 48 hours to make its final decision. The envelope contains the paperwork that gives them the right to do so: the Texas Advance Directives Act.
Kelly refuses to take it.
This isn’t the first time Dunn’s medical team has brought up the subject of ending his care. When Dunn was brought to the hospital by ambulance, the doctor on call told Brittney Kelly, Dunn’s youngest sister, it would be a miracle if the 46-year-old former Harris County sheriff’s deputy survived the night. The mass on his pancreas was causing problems for the rest of his organs; he was in renal failure, and his vitals were so weak that the physician told Brittney the family needed to say their good-byes.
But he didn’t die that night. In the days that followed, the medical team called a series of meetings with the family to discuss Dunn’s health, their treatment plan and the choices that would need to be made. All but one of these meetings were held in the hospital’s family room, a small, softly lit area just off the main waiting room with boxes of tissue scattered around.
Kelly made it clear in each meeting that, as a born-again Christian, she wasn’t going to take her son off life support. She pushed the doctors — Dunn’s attending physician, Dr. Aditya Uppalapati, and the rest of his medical team — to perform a biopsy on the pancreatic mass or to open him up and remove it entirely. The physicians said Dunn was too weak for either procedure. The relationship between Kelly and the physicians became so tense that some of the doctors wouldn’t enter Dunn’s room.
From Kelly’s standpoint, every second her son lived was a reason for hope, but for the doctors, it had meant weeks of treating a man who wasn’t showing any signs of improvement beyond simply having a pulse.
But now, it seems, his time is up. A doctor specializing in “comfort care” — Cheney gestures to a woman in a white coat standing next to him — will remove all the machines keeping him alive and inject him with Ativan and morphine. That will make the dying process less painful, Cheney tells Kelly. When Kelly still won’t open her hand to take the envelope, he sets it down next to her on the couch.
“Who gives you the right to do this, to do this to my son?” Kelly asks, staring at Cheney.
“George W. Bush gave us the right,” Cheney replies.
Two days later, the hospital ethics committee meets, this time in a nondescript conference room packed with at least 30 people. The meeting is short. Uppalapati sums up his take on Dunn’s prognosis: that he will not recover. The hospital ethics committee votes to approve the doctor’s recommendation and end Dunn’s medical care.
Kelly’s only other option is to have her son transferred to another hospital, and that has to happen within ten days.
Houston Methodist is required to help facilitate such a transfer, but Kelly doesn’t trust that hospital officials will make a good-faith pitch to another hospital. She and Dunn’s siblings make the calls.
“I mean, how do you even sell that one? ‘Hi, my brother is on a ventilator and he can’t breathe on his own and this hospital won’t keep him anymore. Do y’all want a crack at it?’” Brittney says now.
An official at another hospital asked Kelly why she was trying to move Dunn. “Don’t you realize you’re at one of the best hospitals in the city?” the administrator asked.
Kelly laughed and started to cry. “Yeah, but they’ve said they won’t help him get better,” she said.
Chris Dunn didn’t have health insurance, and he had never filled out advance directives or even talked to his mother and siblings about what they should do if he ever got really sick.
It wouldn’t have changed anything anyway — not once his doctors decided to convene a hospital ethics committee.
In Texas it doesn’t matter what instructions you’ve previously given or what your relatives say: If you’re in critical condition, you’re dependent on machines to survive and hospital officials decide it’s time to pull the plug, you will die. And it’s completely legal.
Chris Dunn gestured from his hospital bed that yes, he wanted to live.
Courtesy of Evelyn Kelly
A few days after the meeting, Kelly was paging through the contents of the envelope when she saw a small flyer from Texas Right to Life, a pro-life organization that helps people trying to transfer patients.
She pulled out her phone and called. She struggled to explain what had happened, but John Seago, the spokesman for the pro-life group, has heard stories like this one a couple of hundred times by now. “Mrs. Kelly, I have one question for you: If I agree to help, are you in it to win it?” Seago said.
Within a few hours, longtime Houston lawyer and former state representative Joe Nixon was in Dunn’s hospital room shaking hands with Kelly.
“I really thought he’d be unconscious, a vegetable, the way they usually are,” Nixon says now. When he saw that Dunn’s eyes were open, Nixon started asking him questions. One of the lawyers pulled out a phone and began to film.
“Chris? Look at me! Is it okay if I hired some lawyers?” Kelly said insistently, leaning over the hospital bed and waving her hands. Dunn gave a slight nod.
“Chris, do you want to stay alive? Do you want me to fight for your life?” Nixon asked using his full courtroom voice.
Dunn pulled his palms together, as if in prayer, and nodded his head.
None of the other hospitals would take Dunn. Nixon went before Harris County District Court Judge Patricia Kerrigan to ask the judge to issue a temporary restraining order against the hospital and give the family more time. Judges are allowed to grant more time only if there is a chance another hospital will accept the patient. Otherwise, judges have no power to rule on such cases. Kerrigan issued the restraining order.
Houston Methodist spokesman George Kovacik makes it clear in an emailed statement that while he can’t discuss Dunn’s case because of privacy law, hospital officials want it known that Dunn was still being properly cared for. “We are providing life-sustaining treatment to Mr. Dunn and we have since the day he came here,” Kovacik stated. (Kovacik has since said he has no other comment on Dunn’s case.)
Meanwhile, Dunn occupied bed nine in Houston Methodist’s intensive care unit, his stomach swelling with excess fluid while a sickly sweet smell of decay began to permeate the room.
Dunn died on December 23, before hospital care was withdrawn. Now Kelly is suing Houston Methodist on behalf of Dunn’s estate. She has a difficult task ahead of her.
Courts have consistently found such cases moot once the patient dies. However, this time Nixon is hoping the court will let the case move forward since he is challenging the law by saying it violates a constitutional right to due process.
“Chris wasn’t in a coma. He was there and we have indisputable evidence that he wanted to live,” Nixon says. “This case directly brings into question the constitutionality of these hospital ethics committees and what point they may lawfully terminate a life.”
Evelyn Kelly wanted to know what gave a hospital the right to end her son’s care.
In recent years, many people regarded the Affordable Care Act with real terror, convinced that President Barack Obama’s health-care overhaul was going to create “death panels” that would deny certain people care based on their age, their condition, their prognosis and the expense of their treatment. As it turns out, Texas has had these “death panels” in the form of hospital ethics committees for decades. In 1999, then-governor George W. Bush even gave the committees the power of law to make decisions on a patient’s care.
Hospital ethics committees started springing up around the United States in the 1970s after the New Jersey Supreme Court advised a hospital to set up a panel to help doctors figure out what to do when a patient or a patient’s family disagreed about medical treatment. Some of the first such committees were set up by hospitals in the Texas Medical Center. New York Times reporter Lisa Belkin wrote First, Do No Harm, a bestselling book about the Hermann Hospital (now Memorial Hermann Health System) ethics committee, one of the first created in Texas.
In the 1990s, a group of Houston hospitals got together and drew up a list of guidelines for ethics panels to follow. The guidelines were never used to decide a case, but the concept of the ethics committee was eventually included in state law.
In 1997, a coalition of hospitals, doctors, medical professional associations, pro-life groups and religious organizations approached state representative Garnet Coleman, a Houston Democrat, about putting together a law that would consolidate various state statutes dealing with living wills and advance directives.
“The hospitals led the coalition because they were the ones dealing with the issues,” Coleman says now, noting that there was legal confusion about how to handle the approach of death.“The purpose was to have clarity so that everyone knew what to do and it would be handled the same way at every hospital.”
The first attempt to pass the bill, the Texas Advance Directives Act, failed when Bush refused to sign it because an amendment had been included in the bill — based on the ethical guidelines laid out by Houston hospitals — that allowed a doctor to decide independently to end a critically ill patient’s medical care.
In the next state legislative session, in 1999, Coleman once again shepherded the bill. This time a provision was added that required a doctor to go to a hospital ethics committee when there was a disagreement between the attending physician and the patient or the patient’s family about medical treatment. Bush signed the bill into law.
Initially, Texas Right to Life was one of the biggest proponents of the Texas Advance Directives Act, which endowed hospital ethics committees with so much power. The pro-life group supported the law because its members believed having a transfer option was going to save people from the decisions of such committees.
The group was wrong.
“I think the law was an attempt to balance between the rights of the doctor and the rights of the families. They were trying to strike a balance, but maybe they didn’t strike it,” Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law, in St. Paul, Minnesota, says.
However, Wesley J. Smith, a lawyer and senior fellow at the Discovery Institute’s Center on Human Exceptionalism, a conservative anti-euthanasia organization, is more certain about the effects of the law. “There’s no written record of why the ethics committee agreed, no opportunity for appeal, and the people who make these decisions know each other and work together. It gives them a lot of power,” Smith says. “The difficulty is you have strangers applying their values to an individual situation. And the thing is, how do they know what the right reason is to keep someone alive and what makes a wrong one?”
For doctors, there’s a question of whether they’re committing an ethical violation if they continue to treat patients that they believe will never get better. “All of this training we go through teaches us how to fight death. It’s like Darth Vader; it’s our great enemy,” Dr. Gary Floyd, a hospital pediatrician and a member of the Texas Medical Association board, says. “But even now, you can throw everything at a body, but if the body is done, it just won’t respond. And then you have to ask what’s the humane approach? How far do you go before it’s time to stop?”
The question of finite resources may never come up during an ethics committee meeting, but Pope says it’s something else physicians have to consider. There are a limited number of ICU beds, and it can be frustrating when doctors have to turn away patients they feel they might be able to save because of patients who are just occupying beds, he says.
“The problem is that sometimes people do get better,” Pope says. “There’s probabilistic judgment, but sometimes the doctors are wrong and sometimes the family is right when they say they’re hoping for a miracle. Sometimes a family gets that miracle. But if the odds are 1,000 to one, the family may be willing to roll the dice because this is someone they love, but those aren’t good odds to a physician.”
“There was nothing in the law before this one that said the hospital could stop treating a patient, so they weren’t allowed to stop,” Coleman says. “People would linger for years.”
It’s rare for a patient’s case to end up before a hospital ethics committee, because most patients die before the process is completed. However, it’s very difficult to stop the process once it starts.
In 2005, Zee Klein’s 91-year-old mother, Edith Pereira, was taken to Memorial Hermann in the Texas Medical Center with a urinary tract infection. Pereira had brittle diabetes that Klein and her brother had been struggling to help control for years. Pereira had gone blind from the disease, but her heart and lungs were in good shape, she could still feed herself and she was fairly lucid most of the time.
Klein was intent on getting her mother’s infection under control, so she didn’t argue when a doctor put Pereira on a steady dose of morphine that would keep the woman unconscious, and thus unable to eat and regulate her blood sugar, most of the day. But Klein did have a problem when the medical team told her they wouldn’t install a feeding tube.
“We feel that your mother’s spirit is telling us she wants to die,” a doctor told Klein during one meeting.
Klein stared at the woman in disbelief.
“My mother has been a drill sergeant in a skirt my whole life. You’d better go talk to her spirit again, because I guarantee you that’s not what her spirit would say,” Klein retorted.
(Memorial Hermann Health System spokesman James Campbell never responded to Houston Press requests for comment about Pereira’s case or other cases that have been reviewed by the hospital’s ethics committee.)
There’s a disconnect that happens in a lot of these situations, because doctors don’t always define futility in the same way that a patient or the patient’s family would, according to Dr. Quianta Moore, who specializes in health policy at the Baker Institute at Rice University.
Sometimes that disconnect can create an almost insurmountable divide, Moore says. Physicians are trained to make evidence-based decisions that are rooted in medical logic. “The doctor says this is futile medical care, but the family is looking at the person in the bed, arguing that this person who is important to them is still physically present and here, so the concept of letting that person go is difficult,” Moore says. “On the other hand, the physicians are looking at this with another view of what the ultimate goal of care should be — whether that’s re-establishing this person as they were before this thing happened to them or preventing death in the next six months — and if they can’t do that, the care is futile.”
After Klein and the doctors disagreed about the feeding tube, the case was referred to the hospital ethics board. Her mother’s doctor went over Pereira’s condition with the committee. One doctor, an older man, pointed out that if Pereira couldn’t feed and dress herself anymore, the decision was simple. “I just stared at him as he said that about her. I wasn’t supposed to talk, and I couldn’t even find the words to express how insulting that was,” Klein says now.
She and her brother left the meeting knowing the committee would side with Pereira’s doctors. Klein found a doctor at St. Joseph Medical Center who agreed to take Pereira as a patient. She checked her mother out of Memorial Hermann against the protests of the medical staff, took her to her nursing home and called an ambulance. When the EMTs arrived, they complained that they’d been called for a dying woman. Klein brusquely told them to load her mother into the ambulance and get her to St. Joseph. “If something goes wrong, just don’t take her to Memorial Hermann,” she instructed.
Pereira arrived at St. Joseph, was pumped full of antibiotics and soon stabilized. She lived for about six more months, though she was rarely coherent during that time, Klein admits. Klein says it was worth it. “When she finally died, it was her time. She’d taken care of everyone in my family through everything. We couldn’t let them decide when it was her time to die. She decided herself. That was all we wanted.”
Right now, the official transfer registry doesn’t feature a single hospital in Texas. Instead, it lists a handful of lawyers and pro-life organizations, including Texas Right to Life, to call. There’s no reporting requirement for the cases that go to hospital ethics committees, and it’s unclear how often hospitals withdraw care, how often patients successfully transfer and how often patients die before the ten-day transfer window closes.
A voluntary survey of hospital members of the Texas Hospital Association, conducted in 2004 and reported in 2007, is the closest thing there is to an effort to track the numbers on ethics committee cases. Only 40 of the 409 hospitals contacted completed the survey on cases involving end-of-life care conflicts that had gone before an ethics committee.
In 70 percent of these cases, the committee agreed with the attending physician that the treatment requested by the patient or family was inappropriate, according to the study. In 30 percent of the cases, the panel sided with the patient or family. After learning the committee had sided with the physician, 40 percent of the patients or their families agreed to stop treatment. Forty-four percent of the patients died waiting for a transfer. Seventeen percent were moved to other facilities. Eight patients improved and continued to receive life support.
Houston Methodist never responded to Houston Press requests for its hospital ethics committee statistics.
Kelly says she was never given a clear diagnosis, but Dunn’s condition is spelled out in probate court records. By the end of December, Dunn was suffering from “end-stage liver disease, the presence of a malignant pancreatic neoplasm with suspected metastasis to the liver and complications of the gastric outlet obstruction secondary to his pancreatic mass. Further, he suffers from hepatic encephalopathy, acute renal failure, sepsis, acute respiratory failure, multi-organ failure and gastrointestinal bleeding,” according to Uppalapati. Dunn’s condition was irreversible and progressively terminal, Uppalapati wrote.
During one strained exchange between Kelly and the doctors as she once again urged them to use more aggressive treatment, David Dunn, Chris Dunn’s father, asked the doctor for his opinion.
“If this were your son, what would you do?” David Dunn asked.
“I would let him go,” the doctor replied.
But letting go, particularly when it’s a child, is difficult.
When Sandra Vela met with a hospital ethics committee at Memorial Hermann Health System in 2012 concerning her son’s care, she didn’t realize until the meeting started that she wasn’t allowed to talk and that the committee was deciding whether to take her four-year-old son, Clifton, off life support.
Clifton had arrived at Memorial Hermann five weeks earlier badly beaten and with brain swelling after he was left in the care of Vela’s ex-husband’s girlfriend. He hadn’t improved, and part of his scalp and brain tissue was removed to deal with the swelling. The hospital ethics group sided with the doctor.
For the next ten days, Vela presented a nurse with a list of hospitals and medical facilities to call and ask if they would accept her son. She spent the rest of her time talking to him and singing, watching closely as he moved first one hand, then the other, something she’d thought the doctors had said would be impossible with his level of brain damage. Her child wasn’t dying, she told herself.
She managed to believe that until the day she noticed the surgical gauze around his head incision was leaking. Vela called for a nurse and started swabbing at his neck herself while she waited for help. Then she spotted the clotted white bits in the blood. No one had to tell her. She knew it was brain matter.
On the final day, she was holding him when they took the ventilator out of his mouth. He immediately started gasping. The doctors had said it would be quick, that he couldn’t possibly live long while breathing on his own, but his uneven breaths kept coming. Vela clutched him, whispering that she loved him, that it was okay to go. After almost an hour, Vela couldn’t stand it anymore. She motioned to a nurse, who gave Clifton an injection of morphine. First his breathing stopped, and then his heart.
Pope, a legal expert on the subject of medical futility, acknowledges there are real concerns with the law. “The risk of abuse is enormous,” he says. Nothing is recorded and the decisions aren’t reported to the state, and there are no guidelines about who should serve on the committees. “There aren’t any standards to ensure that a life-or-death decision is actually a reasonable decision,” Pope says. “There’s a sort of black hole left open in the statute, and some hospitals have done a very good job of being careful and fair, but it’s doubtless that some hospitals have not.”
Even people who should know the system have been shocked to find out how it works. In November 2015, Ann Bryant, an 86-year-old retired music teacher who still gave piano lessons, lived alone and drove her own car, was taken to a Beaumont hospital emergency room with a septic knee joint. She bounced from hospital to hospital before landing at Christus Southeast Texas Hospital-St. Elizabeth in Beaumont a few weeks later. She was alert until then, according to her daughter, Lisa Mesch, a nurse with decades of medical experience. Bryant collapsed, and the doctors told Mesch and her brother, Paul Bryant, that she would never recover.
The siblings repeatedly asked the medical team to conduct more tests because they wanted to know if Bryant had any brain activity. “We were going to take care of her no matter what, but we wanted to see if there was any chance she would be the way she was before, so we would know what decisions to make,” Paul Bryant says now. The doctors refused. Frustrated, Paul Bryant and Mesch met with the head of the hospital, and Paul Bryant pulled out the hospital’s patient guide and went over the ways he felt the hospital was not giving his mother the respect and care she deserved. The next meeting about Bryant was called simply to inform the siblings that the hospital ethics committee was going to meet and review Bryant’s case.
Even though Mesch was an ICU nurse for years, she didn’t realize the meeting was about withdrawing medical care until she read through the information packet the hospital officials gave her and her brother. “I really thought it was to talk about ethics,” she says now. “But that wasn’t the point.”
The day of the meeting, Bryant’s breath was shallow. Mesch looked at her mother and told her brother to go to the meeting while she stayed in the hospital room. Bryant died before the meeting ended. The ethics committee agreed with the doctors about ending her medical care.
Garnet Coleman readily admits the law isn’t perfect. Ever since the statute went into effect in 1999, Coleman and other legislators have been working to adjust it so that it serves patients and doctors more equally. The problem is that Texas Right to Life has been working to eradicate the law entirely for more than a decade, Coleman says. The organization pours money into lobbying efforts that oppose any change to the statute other than wiping it from the books. “They’d gut it if they could, so we can’t bring it to the floor to change it directly,” he says.
Because of this stance, Texas Right to Life has also blocked bills to amend the law to protect disabled patients from discrimination, to give patients more than ten days to secure a transfer, and several other proposals, Coleman says.
If Kelly’s case against Houston Methodist is successful, the odds are good that will be the end of the law entirely, Pope says. “Courts don’t like to rewrite legislation. It would then be up to the state legislature to come up with a new statute, but trying to get that through the Texas Legislature now, as things are today, it’s going to be a hard sell.”
The statute has become so controversial that Republican legislators shy away from even attempting to amend it now, Coleman says. In 2014, longtime Dallas Republican state senator Robert Deuell was running for re-election when Texas Right to Life ran ads claiming the family physician had “turned his back on life and on disabled patients” because he had sponsored a bill to ensure that end-of-life patients got feeding tubes and hydration even if other care was withdrawn. (Deuell’s bill failed, but a similar bill made it through the state legislature in 2015.) Despite the support of other pro-life groups, Deuell narrowly lost his seat in the primary.
Since the bill can’t be amended through the state legislature, Coleman says he and others have approached hospitals and hospital organizations to see if they will agree to put policies in place that require physicians to wait a certain period of time before the hospital ethics committee process can begin. “We’ve asked, but these are private policies, so it’s impossible to know if the hospitals have actually put any of our suggestions in place,” Coleman says.
Meanwhile, Kelly has sworn she’ll do whatever she can to get the law removed from the books entirely. “It’s not right,” she says. “He was dying and we were having to fight with the hospital the whole time. No family should have to go through this.”