Doctors vs. Parents: Who Decides Right to Life?

"The assumption, I think, has always been that you have to assume doctors are acting in good faith," says Burke Balch, director of the National Right to Life's Robert Powell Center for Medical Ethics in Washington, D.C. "Yet, human nature is such that people do engage in cover-ups and people do make mistakes. There can be simple bad actors and flat-out malpractice that this (law) provides an opportunity to cover up. And human nature being what it is, that's what tends to happen."

Dr. Robert Fine points out that hospitals cannot initiate the Advance Directive law, only doctors can. And the physician who does invoke the law cannot sit on the ethics committee. In addition, Fine does not believe doctors and hospitals are in cahoots, because in most facilities throughout Texas, hospitals do not employ doctors, rather physicians work as independent agents.

"In my judgment," Fine says, "there's no way for a doctor to use this, to, let's say, hide a mistake. As a matter of fact, if a doctor wants to 'hide a mistake,' the last thing they're going to do is call in an independent committee."

State Representative Garnet Coleman, (D-Houston), who helped author the 1999 act, tends to agree with Fine. When asked if he thinks the law is sometimes used to bury malpractice, he says, "I would hope not, and that's why we have autopsies. I don't think that the law either encourages it and I don't think that it discourages it. As long as you've had an autopsy, then you would find out what was the cause of death and whether there was a medical error."

Texas ethicist William Winslade has a slightly more humanistic take.

"I'm sympathetic to doctors who don't want to provide life-support or treatment to people with incurable diseases," he says. But "in a case where the person's condition was the result of alleged medical error, I think that the hospital would be prudent and it would be morally appropriate for the hospital to prolong the process and not simply invoke the process because they can."
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Imagine being conscious and aware, fully able to understand what people are saying, yet virtually unable to walk, talk, eat or go to the bathroom on the toilet.

This is the world of Sabrina Martin.

Her short-term memory is not what it used to be, say her parents, but Sabrina can remember practically everything up until her second surgery two years ago. For a while she was able to speak, but recently she has regressed and has difficulty finding her voice.

"Because she is in this locked-in syndrome," Sabrina's physician, Dr. Sharon Kawai, says during a taped interview with Painter, "she knows what she was able to do before and that she's not able to do now."

Lopez and Murray say they must be careful around their daughter not to talk about the hospital and their efforts to save Sabrina because she gets visibly upset and it can take an entire day to calm her down. And then there's the nightmares.

"She would wake up screaming, 'I don't want to die,'" says Lopez. "And we would sit up with her and rock her back to sleep. It was like she was stuck in that traumatic moment when all that craziness was happening at the hospital."

Shortly after transferring to Texas Children's Hospital, Sabrina began to improve so dramatically that doctors recommended she not go home but rather be moved to a rehabilitation facility in San Antonio. There, at Kindred Hospital, Sabrina emerged from her coma. Doctors were able to remove her breathing tube and Sabrina began getting better, even advancing to the point where she was able to help her younger sister do math homework by counting on her fingers. Doctors now say Sabrina should have a full life expectancy.

"The people at Memorial Hermann said this would never happen," says Lopez.

Today, Sabrina must wear a diaper and primarily eats through her feeding tube, but she can swallow some soft foods like mashed potatoes and drinks from a bottle. She is wheelchair-bound, but can partially stand when lifted out of her seat. Occasionally she'll whisper, but mostly she nods her head and makes noises to express herself.

Still, it's a long way from being a "vegetable," say Lopez and Murray. And to them it's a blessing.

"It's all small improvements," says Lopez, "but to us they're major."

Starting this summer, Sabrina will begin attending Special Education classes at Klein Intermediate in hopes of doing well and continuing on with school in the fall.

While Lopez continues to work full-time, Murray quit his job as a salesman two years ago and takes care of Sabrina at home. But he has help.

Davida Veal was a former classmate and basketball teammate of Sabrina's before the surgeries, but now she calls Martin her best friend in the world. Two years ago, Veal decided to help care for Martin. She moved out of her own home and is living with Lopez and Murray, sharing a bedroom with ­Martin.

Every day after classes, Veal says she comes home and hangs out with her friend, telling Sabrina about the latest gossip at school, watching TV, combing her hair or just holding Sabrina's hand while she sleeps. Nothing brings Veal more joy, she says, than when she cracks a joke that makes Sabrina laugh.

Veal becomes sad and cries, however, when remembering life before the ­surgeries.

"We can't do the same things we used to do together," she says. "And it all happened so fast. I mean we were in eighth grade taking our TAKS together and she was fine except for her headaches, and then a couple days later she was in the hospital. When I first found out what happened, I didn't think it was going to hurt me as much as it did. And then I just felt that I needed to do more than I normally would."

For Veal, that meant going to her parents and asking if she could move in with Martin.

"At first my parents were like, 'We don't want you to be away from home,' but then I begged and begged and told them that I promised myself that I would not leave her side," says Veal. "I mean, I miss my family, but for me it's worth it. I don't have a problem doing it because it's my choice and it's what I want to do."

Lopez and Murray feel the same way.

Sabrina's mother calls her daughter "My Sleeping Beauty" because Sabrina dozes off much of the time. Caring for her is not easy, but her parents says it's far better than the alternative presented to them by the folks at Memorial Hermann.

"I'm so glad we did what we did," says Murray. "It's a lot of work. But it's better now than it was at first. Some days I just want to go up to those doctors and say, "See, look at her now."

chris.vogel@houstonpress.com