Thanatophoric: literally, it means "bringing death." Thanatophoric dysplasia is a genetically based dwarfism that carries its prognosis in its name. Wanda Hudson's son, Sun, was born with this nearly-always-lethal condition, and he would almost certainly have died within minutes of his birth, had he not been placed on life support. Yet Wanda Hudson insisted that it be continued.
Twenty-six-year-old Tirhas Habtegiris had metastatic angiosarcoma and was dependent on mechanical ventilation and receiving large doses of analgesics that left her unresponsive. There was no hope of recovery; evaluations at two Texas hospitals yielded recommendations that the young woman receive palliative care only. But family members would not consent to withdrawal of ventilator support.
In neither case did the public outcry reach the intensity of that surrounding the Terri Schiavo case in Florida-no midnight sessions were convened by the U.S. Congress-but in each the treating facility was accused of caring more about its bottom line than about its patients. Both cases occurred in Texas, and they show that while clinicians may find it obvious that continuing treatment is futile, it's not always obvious to family members, or the public.
In response to what they perceived as a misrepresentation of the facts in nationwide media reports of the two cases, and misunderstandings about the purpose of Texas's Advance Directives Act of 1999, experts at Baylor Health System in Dallas held a Webcast and conference call on February 23-as a way of educating both journalists and policymakers.
"The reverse right to die."
Robert L. Fine, MD, director of the Office of Clinical Ethics at Baylor Health Care System and director of palliative care at Baylor University Medical Center, describes it as "the reverse right to die"-when treatment causes extreme suffering or has no benefit to the patient and it's the physicians and nurses who object to continuing such treatment. The Texas Advance Directives Coalition, comprising the Texas Medical Association, the Texas Nurses Association, the State Bar of Texas, and other professional and lay organizations, recommended changes to state law that ultimately resulted in the Advance Directives Act (see Texas's Advance Directives Act of 1999, page 26). The law doesn't actually define medical futility. Rather, it describes a process for dispute resolution and delineates procedures that must be followed scrupulously to ensure that patients' and families' rights are protected during disagreements about treatment.
A crucial component of the law is that the facility cannot initiate the process; it must be initiated by a physician who disagrees with the family or proxy regarding a treatment decision or advance directive. This is an important point because some media reports about the Hudson and Habtegiris cases implied that the hospitals initiated the process to avoid incurring treatment costs.
Applying the law in the Texas cases.
In the Sun Hudson case, the Texas Children's Hospital ethics committee met with his mother on October 13, 2004, and told her that they agreed with physicians that continued ventilator support was medically inappropriate. On November 14, Hudson was given written notice that she had a 10-day treatment limit and the option to request that they find a facility to which to transfer Sun (according to the law, she would have to pay for the transfer); both actions are in accordance with the Advance Directives Act. The hospital agreed to an extension to December 6, but Hudson obtained a temporary restraining order to keep the facility from removing support. On February 15, 2005, a probate court decided in favor of the ethics committee; an appellate court upheld that decision, and ventilator support was discontinued on March 15, 2005.
Family members of Tirhas Habtegiris who were acting [as surrogate decision makers] didn't want her respirator to be discontinued, despite the opinions of several physicians stating that her condition was terminal and that to continue treatment was inflicting suffering. On November 28, 2005, the family received notification of an ethics committee meeting, the formal beginning of the disagreement-resolution process. The committee met with the family on November 30 and determined that it was in agreement with the physicians that ventilator support should be withdrawn. The family received written notice the following day, explaining that unless they found a facility willing to accept the patient, ventilator support would be discontinued on December 12. No other facility would accept her, and Ms. Habtegiris died on December 12, shortly after being extubated.
Where nurses fit in.
During the February 23 conference call, AJN asked the panel about the nurse's role in the process. "The process does not work well without [the involvement] of nurses, chaplains, and social workers," Fine said. Baylor employs two full-time nurse ethicists with expertise in palliative care who regularly confer with bedside nurses on these issues.
In cases of medical futility, nurses can be the bridge connecting families to clinicians. Fine said it's important that a multidisciplinary team explore treatment options and that evidence be presented to the family to illustrate the perspective of the health care team. The family needs help, he said, to understand that "life cannot be sustained forever." Although guidelines may be needed in only a small subset of cases, those in which they are needed are often in critical care settings.
"Nurses are the buffer between what is really happening and the family's perception of what is happening," added Thomas Mayo, JD, director of the Cary M. Maguire Center for Ethics and Public Responsibility at Southern Methodist University (SMU) and associate professor at SMU's Dedman School of Law, both in Dallas.
The ANA's Code of Ethics for Nurses with Interpretive Statements doesn't specifically address medical futility but acknowledges that conflicts can arise in health care decisions. It states, "Nurses strive to resolve such conflicts in ways that ensure patient safety, guard the patient's best interests, and preserve the professional integrity of the nurse." An ANA position statement on assisted suicide published December 8, 1994, states that "withholding or withdrawing life-sustaining therapies or risking the hastening of death through treatments aimed at alleviating suffering and/or controlling symptoms are [sic] ethically acceptable and do [sic] not constitute active euthanasia."
Advice for facilities.
At a meeting of the Association of Health Care Journalists in Houston in March of this year, Amy McGuire, PhD, JD, a medical ethicist at Baylor College of Medicine in Houston, spoke about futility cases. She suggested that providers prepare families early on, in order to avoid having to go through the resolution process. "Give bad news early," she said. "Provide frequent updates, and most important, avoid having different care providers give conflicting information. Focus on the goals of care."
As caregivers wrestle with decisions about whether what they can do for the patient should be done, there is now, at least in Texas, a clearly defined process that can help settle disputes.
Texas's Advance Directives Act of 1999
Signed into law by then-governor George W. Bush and also known as the Texas Futile Care Law, the Advance Directives Act of 1999 specifies the process that is to be followed when it has been determined that a patient has no hope of recovery and health care providers and families are at odds over treatment. The process stipulates that the patient's surrogate is entitled to receive 48 hours' notice of a meeting by the facility's ethics committee to discuss the case, to attend the meeting and to be given a written overview of the process, and to receive a list of providers willing to accept the patient and a written copy of the committee's decision.
If the ethics committee agrees that treatment should not continue, the institution must continue treatment until the patient is transferred. The surrogate must bear the cost of the transfer. If transfer does not occur at the end of 10 days, the hospital has no obligation to continue treatment unless a court orders it to do so.
Only when this process is followed are hospitals and staff protected from liability.