Texas act formalizes ethics committee role in disputes
Drafters say act is still somewhat misunderstood
The Texas Advance Directives Act (TADA) was enacted several years ago after a consensus of health care providers in that state agreed that there was a need to come up with a process to resolve ethical disputes that can arise at the end of life in a way that would foster dialogue and avoid courts of law whenever possible. The act, signed into law by then-Gov. George W. Bush, made substantial changes to state law regarding end-of-life and medical futility (renamed "medically inappropriate treatment"); while considered groundbreaking by many, it has come under fire as the result of some recently publicized end-of-life cases.
"We recommended over 20 substantive changes to Texas law regarding end of life and agreed on new definitions of terms and a new form of a living will that allows patients to reject or request life-sustaining treatments," says Robert L. Fine, MD, FACP, director of the Baylor Health Care System office of clinical ethics in Dallas. Fine was a member of the multidisciplinary task force that drew up the law. "It’s unique in the country, but it’s still misunderstood."
One element of TADA establishes a process for resolving disputes among family members, patients, and health care providers, and formalizes the role of the ethics committee when disputes arise. Importantly, in cases in which there is a dispute over withdrawal or continuation of life-sustaining treatment, once all aspects of the law are satisfied, health care providers are immune from legal liability.
Thomas W. Mayo, JD, director of the Southern Methodist University Cary M. Maguire Center for Ethics and Public Responsibility and co-chair of the Parkland (TX) Hospital and Children’s Medical Center ethics committees, says TADA "started with the idea that physicians and patients earnestly deliberate and negotiate prior understanding of the limits of care, so that they could reach an agreement that if the patient developed a terminal or irreversible condition, it would be known whether the patient would or would not want certain treatments."
This requires dropping the natural tendencies on both sides to avoid talking about possible bad outcomes, he points out.
The Texas law favors a joint decision-making arrangement, with attempts to negotiate and reach common ground when there are disagreements.
From that point, if agreement is not reached, an ethics consultant or other resource in the hospital or community is invited into the discussion. Failing then to reach an agreement, the ethics committee is required to become involved.
"Once the ethics process is played out, two things can happen. If the physician is unpersuaded by the outcome, he or she transfers the patient to another physician," Mayo explains. "If the patient or surrogate is unpersuaded by the outcome, he or she can request transfer to another care setting with the support of the transferor and transferee."
If transfer is not possible, and all other aspects of the TADA have been observed, the disputed medical intervention need not be provided to the patient; and if the health care providers in these cases have satisfied the procedural requirements of the statute, they are immune from all forms of legal liability.
The triggering event that sets the process in motion is when an attending physician refuses to honor an advance directive or a treatment decision made on behalf of the patient.
"You have to scrupulously observe these various due process protections to get the legal protection provided in the statute," Mayo says. The process is initiated by physician disagreement with a patient’s treatment decision, and not by the hospital, and it requires, by law, an ethics committee review.
"And, although an ethics committee review is required, one or more informal consults usually occur before the formal consultation, even though they’re not required. The formal one is the one that satisfies all the due process requirements of the statutes," explains Mayo.
The patient or his or her surrogate is entitled to 48 hours notice of the consult, can attend the meeting, and can receive a written overview of the process. In addition, the surrogate is entitled to a list of providers willing to accept transfer, and an explanation of the ethics committee outcome.
"In a classic right-to-die case, if a physician or surrogate disagrees with the outcome of the ethics committee review, the hospital shall assist the physician in arranging for transfer to another physician, another care setting within the institution, or to another institution," Mayo says. "In a reverse right-to-die (medical futility) case, where the family member is asking that everything be done and the doctors think it is inappropriate, if the ethics committee agrees that the disputed treatment is appropriate, treatment must be continued pending transfer. After 10 days, the hospital is not required to continue the disputed treatment unless it is extended by a court, if there is a reasonable chance of affecting a transfer."
Habtegiris case draws conflict
Fine and Mayo say the goal of the Texas statute is to promote a process that is participatory and collaborative, rather than adversarial, within a context that recognizes that death cannot be postponed indefinitely and that eventually, withdrawal of life-sustaining treatment may be appropriate.
Two recent Texas cases have tested the TADA process. In the case of Sun Hudson, a baby born with a lethal dwarfism condition with no known treatment or cure, he was placed on a ventilator while his doctors researched his diagnosis. Ultimately, his doctors recommended withdrawing life-sustaining measures, providing comfort treatment, and allowing the condition to take its natural course.
The child’s mother, however, rejected that decision, demanded treatment to continue, and insisted that the child’s father, the "sun god," would cure him.
Fine says the hospital ethics committee met with the mother, agreed to try to transfer the child, but was unable to arrange a transfer. She was notified of the decision of the ethics committee, the 10-day limit for continuing the life-sustaining treatment was set, and though the mother did win an additional 14-day extension (via a restraining order), the process was allowed to continue and the child was allowed to die.
In the case of Tirhas Habtegiris, the same process occurred; the 27-year-old woman was diagnosed in August 2005 with multiple masses caused by angiosarcoma and was treated with palliative chemotherapy to alleviate her symptoms. In November 2005, she was readmitted and placed on a ventilator. After an evaluation, her doctors recommended to her family that the ventilator be withdrawn and she be given comfort care only. At that point, the versions of Baylor health care providers and the family diverge; Baylor says she was unconscious due to disease and necessary pain measures, but her family describes her as awake and alert. The family refused the ethics committee’s decision regarding withdrawing life-sustaining treatment on religious and cultural grounds, counseling attempts failed, and transfer was unsuccessful. After 10 days, the ventilator was removed and Habtegiris died within a matter of minutes.
Since her death, Habtegiris has become a hot-button example, both for those who say life-sustaining treatment is removed for the wrong reasons and for those who say her case is an example of a process that offers patients the best care at the end of life.
With legal responsibility, education needed
Asked if the state created skill sets or educational requirements for ethics committee members when it formalized the role of ethics committees, Fine says that was one area on which the task force couldn’t reach consensus.
"Ethics committees vary from institution to institution, and when we developed the law, some of us advocated that we define ethics committee membership and a skills set, but we couldn’t agree on that, and it’s still being discussed," says Fine.
He points out, however, that most of these "core cases" take place at large tertiary hospitals such as Baylor, which has 35 to 40 people on its ethics committee who span the institution and community, meet and study regularly, and receive ethics training.
"We encourage aggressive self-education programs for all members of our committees, and at every meeting we have an educational component," explains Mayo.
Mayo says that from 2001 to 2005, Texas hospitals experienced 592 formal statutory ethics consultations, and an equal number of non-formal consults. Of those 592, 490 were end-of-life cases, one-fourth were explicit futility cases, and of those 12 advanced to the point of the family receiving the 10-day notice of termination of medically inappropriate treatment. The rest, Mayo says, were resolved without dispute.
- Robert L. Fine, MD, FACP, director, office of clinical ethics, Baylor Healthcare System, Dallas; director of palliative care, Baylor University Medical Center. E-mail: email@example.com.
- Thomas W. Mayo, JD, Southern Methodist University Dedman School of Law Dallas; director, Cary M. Maguire Center for Ethics and Public Responsibility; co-chair, Parkland (TX) Hospital and Children’s Medical Center ethics committees. Phone: (214) 768-3767. E-mail: firstname.lastname@example.org.