What if hospitals could put a sign over their doors stating, “We reserve the right to refuse life-sustaining care?” People would be outraged. Yet that is precisely what Texas law explicitly grants to hospitals — namely, to say no to wanted life-sustaining treatment, on the basis of subjective judgments about the quality of the patient’s life. It is an example of a bioethical concept known as Futile Care Theory, a.k.a. medical futility.
How did Texas, of all places, become ground zero for futile-care impositions? Back in 1996, a group of Houston hospitals adopted internal administrative protocols, called the Collaborative Policy, in which they granted themselves the right to refuse life-sustaining treatment even to a patient who still wants it. As described in the August 21, 1996, Journal of the American Medical Association (“A Multi-institutional Collaborative Policy on Medical Futility”), if a doctor wished to refuse treatment, but a patient or family wanted it, the dispute was to be adjudicated behind closed doors by an institutional ethics committee; the patient/family would be given three days’ notice of the meeting. If the committee members decided that the patient should not continue to receive life-sustaining treatment, such treatment could then be cut off immediately, with only comfort care rendered thereafter.
Needless to say, the Collaborative Policy was controversial, and legislation was soon introduced in the Texas legislature to thwart the Houston hospitals’ futile-care scheme. Unfortunately, lawmakers were divided on the issue. Eventually a compromise was worked out, giving families ten days to find an alternative institution to provide care once a hospital ethics committee ruled that treatment for a patient should be terminated. Governor George W. Bush eventually signed the bill into law in 1999 after right to life groups agreed to the compromise, never dreaming that patient transfers would become almost impossible to secure.
That is where matters sat for several years until a few Texas hospitals recently began exercising their prerogatives under the law. Finding it impossible to obtain transfers within the allotted time, affected families resisted, unwilling to meekly submit to the value judgments of ethics committees and doctors that their loved ones’ lives were no longer worth sustaining. For example, the family of Andrea Clark mounted a very public — and ultimately successful — campaign against an attempted futility imposition by St. Luke’s Hospital in Houston. Currently, another futile care controversy is raging in Austin, where the mother of the terminally ill “Baby Emilio” Gonzales has obtained a temporary restraining order preventing the Children’s Hospital of Austin from unilaterally cutting off his life-sustaining treatment.
In response to these and other controversial public cases, legislation was introduced in the Texas Legislature (SB. 439 / HB. 1094) to eradicate the ten-day rule; it would institute instead policies enacted in eleven other states that require hospitals, in futile-care cases, to continue wanted life-sustaining treatment until a transfer can be effected. The bills looked as if they would quickly be passed — that is, until the Texas Catholic Conference unexpectedly came out in support of Futile Care Theory.
Testifying on behalf of an alternative bill (HB. 3474) that would extend the ten-day limit to 21 days — while at the same time permitting hospitals to refuse to provide new levels of treatment that might be required during the waiting period — Bishop Gregory Aymond of the Diocese of Austin, speaking on behalf of all Texas bishops, declared that hospitals, rather than patients/families, should have the ultimate say over whether a patient’s life is maintained:
We believe, and the tradition of our Church has always taught, that a person should be allowed to die with dignity and have a peaceful death. We believe that that is in conformity to God’s will and that God is the one who chooses life and death. It is the teaching of the Church that we should not interfere with that. We also realize that sometimes families, through no fault of their own, are really not able to make those decisions because of their involvement, because of the emotions.
In other words, according to the Texas bishops, even if the patient had appointed a surrogate in an medical directive who instructs that the patient’s life be maintained; even if family members, acting on their intimate understanding of the patient’s values and desires, want treatment continued — Bishop Aymond, sounding very much like utilitarian secular bioethicists who usually promote Futile Care Theory, sniffs that they can’t be trusted to make the right decision due to “emotions.”
People in Texas whom I have talked to about this revolting development suspect that the bishops are hearkening to the desires of the Texas Catholic Health Association, which represents Catholic hospitals. This wouldn’t be surprising, given that some Catholic hospitals have a history of backing Futile Care Theory. For example:
- In 1997 the Alexian Brothers Hospital of San Jose, California, adopted a “non-beneficial treatment” policy that would have permitted doctors to refuse life-sustaining treatment to patients in “irreversible coma,” with “permanent dependence on intensive care to sustain life,” and/or with “untreatable lethal congenital abnormality,” among other conditions. (The policy was never implemented, and the hospital was subsequently sold.)
- In “Time for a Formalized Medical Futility Policy,” published in the July-August 2000 issue of Health Progress, which describes itself as the “official journal of the Catholic Health Association,” Rev. Peter A. Clark and attorney Catherine M. Mikus described a futility policy that had been promulgated by the Mercy Health System in Philadelphia, intended to “free its physicians from legal concerns” when imposing unilateral withdrawals of treatment. Like the Texas law, the protocol authorized a committee to adjudicate futile-care disputes between patients/families and physicians. According to the protocol, once an intervention “has been judged [by the committee] to be medically inappropriate” it “will not be allowed” in the institution — even if another doctor agrees to provide the care.
- Meanwhile, it may not be coincidental that the Children’s Hospital of Austin, the facility seeking to end Baby Emilio’s life, is part of the “Seton Family of Hospitals,” which are Catholic institutions.
What would drive administrators and ethicists at some Catholic hospitals to support Futile Care Theory? No doubt, partly a sincere desire to alleviate the suffering of the most ill and profoundly disabled patients. But social justice — the polite term for the money imperative — also cannot be left out of the equation. The care provided to patients involved in futility disputes is the most expensive. Boiled down to its essence, Futile Care Theory is a form of ad hoc health-care rationing that is at least partly designed to address the problem of tight resources in an era of managed care and HMOs. As the Ethics Committee of the Society of Critical Care Medicine said in a Consensus Statement back in 1997 supporting medical futility, “Given finite resources, institutional providers should define what constitutes inadvisable treatment and determine when such treatment will not be sustained” — which is precisely what the Texas law permits, and is now supported explicitly by the Texas bishops.
Near the end of his testimony, Bishop Aymond quoted the 1995 encyclical The Gospel of Life, in which John Paul II stated that in situations “when death is clearly imminent and inevitable, one can certainly in conscience refuse forms of treatment that would only secure precarious prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.” But surely, John Paul II was referring to the right under Catholic moral teaching of patients and families to choose to forgo treatment — not the right of hospital ethics committee to impose such decisions upon the unwilling.
If patient autonomy is to retain any real meaning; if we are to prevent subjective and invidious quality-of-life value judgments from being imposed upon the sickest and most vulnerable among us — it is crucial that the Texas legislature kill the futile-care law’s 10-day rule once and for all. Unfortunately, the Texas bishops and Catholic Conference are impeding the success of this important work. In so doing, they are opening the door to the imposition of medical discrimination against those judged by strangers on ethics committees to have lives not worth living. Somehow, I don’t think this is what John Paul II had in mind.