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IMH Happenings

9/26/2006
Right to life vs. 'futile-care law'
By Howard Witt
Chicago Tribune

HOUSTON - If it had been up to her doctors, the Houston hospital where she was treated, and the laws of the state of Texas, Kalilah Roberson-Reese would be dead by now.

Instead, the severely brain-damaged 29-year-old woman is being cared for in a Lubbock nursing home, where she has become a focal point in a growing struggle over a controversial Texas law that permits hospitals to withdraw life support from patients whose conditions they deem hopeless - even if family members object.

To its supporters in the medical and legal communities, the Texas law, one of only two in the nation that set such a transfer-or-perish deadline, is a sensible and compassionate solution to one of the most vexing end-of-life questions posed by modern medicine: How long should a patient be kept alive when there is no hope of recovery?

"When a loved one is dying, none of us wants to let go of that situation," said Garnet Coleman, the state legislator who co-authored the law, formally titled the Texas Advance Directives Act. "But ethically, a physician should not be forced to do harm to a patient by continuing treatment. With this law, they have the ability to say, 'I can't do any more for this patient, and it's wrong to do more.' "

To the growing ranks of critics, however, including disability-rights groups, right-to-life organizations, and family members of some of the terminal patients, the Texas law is an outrage that grants hospitals immoral power over life and death and forces beleaguered families into an eleventh-hour scramble to save their loved ones.

"This law allows doctors and hospitals to abandon patients and provides them safe harbor and immunity to do it," said Jerri Ward, an Austin lawyer who has filed several lawsuits to prevent doctors from ending treatment. "The Hippocratic oath has morphed from treating illness and saving people's lives to allowing doctors to make subjective quality-of-life decisions about... who should die."

That's what Cynthia Deason, Roberson-Reese's mother, believes happened in the case of her daughter, whose cascading medical tragedy started with pregnancy complications and led to the loss of her premature baby. She suffered an embolism in her lung, along with kidney and heart failure. Her breathing tube became dislodged, and by the time nurses noticed the problem, she had suffered irreversible brain damage.

In late June, Memorial Hermann Hospital informed Deason that further treatment would be medically futile and gave her the required 10 days to find an alternate facility. Deason balked and sought a court order to block the hospital from discontinuing life support. The hospital relented, and by late July, administrators had found a nursing home in Lubbock willing to accept Roberson-Reese.

Today, Deason reports, her daughter has regained some consciousness, responds to familiar voices, and can sit upright in a chair.

"Nobody has the right to determine whether my daughter should live or not," said Deason, of Long Beach, Calif., whose son is autistic and whose husband recently suffered a stroke.

Memorial Hermann Hospital officials are guarded in their comments about RobersonReese's case, because Deason has said she may file a medical malpractice suit. But they say they followed the procedures required by the futile-care law, including convening a futility review committee of independent physicians and nurses to examine the case.

"The futility review committee affirmed the treating physician's judgment that continuing life support is medically inappropriate," the hospital said in July.

In many ways, the controversy over the Texas law is a mirror image of the "right-to-die" struggles in the 1970s and ྌs, when patient-rights advocates worked to persuade hospitals to honor the wishes of the terminally ill who did not want extraordinary measures taken to prolong their lives.

Now it's often the hospitals seeking to discontinue treatment, but many states have yet to grapple with the turnabout. Only 10 states have passed laws forbidding hospitals to withdraw treatment if family members or guardians object and requiring treatment to continue until a patient can be transferred, according to a study by the National Right to Life Committee in Washington.

Only two states impose deadlines for family members to find alternate facilities for their loved ones: Virginia allows 14 days and Texas 10 days.

Texas' futile-care law has been on the books since 1999, but it's only in recent months that families of some terminal patients, often supported by Texas right-to-life groups, have begun waging public battles against it. More than a dozen cases like Roberson-Reese's have now surfaced, which prompted lawmakers to hold hearings this summer on possible amendments.

Among the changes being proposed: extending the 10-day transfer deadline and introducing independent mediators in cases where hospitals and family members disagree.

Texas Right to Life, the state's leading pro-life group, initially supported the futile-care law as a compromise between the rights of families to protect their loved ones and the rights of doctors to withhold pointless treatments. But the group says some hospitals have abused the law's provisions by seeking to withhold care from patients whose conditions are complicated and expensive to treat.

Some cases in which the law has been invoked "do seem to be financially motivated," said Elizabeth Graham, director of Texas Right to Life. "The hospitals will say it is not, of course, but it does seem that the majority of patients or families calling us for help are either uninsured, underinsured or they have Medicaid."

Groups supporting the rights of the disabled also suspect hospitals' motives.

"The way the medical community and society in general have valued the lives of people with disabilities does not bode well when it comes to doctors making decisions as to whether a life is worth living," said Colleen Horton, public policy director at the Texas Center for Disability Studies. "People who don't see the value of living with a significant disability are determining whether your life is a burden and treatment is futile."

Even supporters of the law, who see it as necessary to helping hospitals deal with families that cling to false hopes, concede that some provisions ought to be revised.

"There are situations where it's no longer medically appropriate to continue procedures that have no therapeutic benefits other than to prolong organic life," said William Winslade, a lawyer specializing in medical ethics at the University of Texas Medical Branch in Galveston.

"But I am unhappy with the statute because of the way it loads the dice in favor of doctors and hospitals," Winslade added. "The patients and their families just don't have any resources.... We don't need a law that appears to be railroading the families."

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