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Abandoning a waning life.

When it comes to getting a clear legal statement concerning their authority to forgo "futile" treatment, physicians must feel like Tantalus. Repeatedly in the past several years, this issue--certainly one of the most controversial in clinical ethics today--has appeared ready for judicial resolution. Yet a clear ruling on whether physicians may withhold or withdraw treatment patients and their families want still dangles just out of reach.

The most recent experience in frustration came in April when a jury in the Suffolk County Superior Court returned a verdict for Massachusetts General Hospital and two of its physicians who had been sued for withdrawing life-support systems from an ailing patient over the objections of her daughter. The media trumpeted this as the case in which the "court ruled that a hospital and its doctors need not provide care they deem futile, even if the patient has asked for it."(1) But a closer look shows that Gilgunn v. Massachusetts General Hospital(2) belies such a description.

First, all we have now is a jury verdict. Until an appellate tribunal reviews the case and rules on any objections to the evidence and the jury instructions, the verdict has little legal significance in itself. Indeed, the greatest danger at the moment is that people--especially physicians and hospital executives, but patients and their families as well--will be misled by media coverage into thinking that the law has now placed the decision about which treatments should be used (especially with critically ill patients) solely in physicians' hands.

The greater reason why Gilgunn has thus far done little to resolve the question at issue--what may doctors do when they decide further treatment would be futile?--is that the lawyers structured the case to avoid a head-on examination of the issue.

Treating Mrs. Gilgunn

In mid-May 1989, Catherine Gilgunn, a seventy-one-year-old resident of Charlestown, Mass., fell in her home and injured her left hip. Three times before she had been hospitalized to have a broken hip repaired, and for several weeks she was reluctant to enter the hospital for treatment of what turned out was another break.

Mrs. Gilgunn was generally in poor health, having suffered for years from many illnesses, including diabetes, heart disease, and chronic urinary tract infections. A few years earlier, she had been diagnosed with Parkinson disease, and in 1988 she had suffered a stroke from which she had not fully recovered. Besides the previous hip operations, she had recently undergone a mastectomy for breast cancer.

Mrs. Gilgunn's thirty-year-old daughter Joan, who had primary responsibility for her care, allowed her to delay having the hip examined for several weeks. When medical problems (related to the diabetes) began appearing, however, she took her mother to Massachusetts General Hospital on 7 June 1989. Nine days later (and before her surgery could be performed), Mrs. Gilgunn suffered two grand mal seizures. She experienced repeated seizures that were not controlled by anticonvulsants until 29 June, resulting in brain damage and coma.

In accord with the wishes of Mrs. Gilgunn's husband and five children, Joan took on the role of surrogate decisionmaker. Ms. Gilgunn made it clear to the physicians that her mother always said she wanted everything possible done medically.

Nonetheless, after several weeks of treatment, her physicians decided that further care would be futile. With encouragement from the hospital's Optimum Care Committee, Mrs. Gilgunn's attending physician wrote a do-not-resuscitate order on her chart on 5 July despite the expressed wish that "everything be done." Father Edwin Cassem, M.D., chair of the committee, took the view that the family's opinion was not relevant because cardiopulmonary resuscitation was not a "genuine therapeutic option," and a social worker concluded that the family's unpreparedness for their mother's death did "not justify mistreating the patient."

Two days later, when Joan Gilgunn strongly protested, the physician in charge of Mrs. Gilgunn's care decided to revoke the DNR order because he found that the family was willing to care for Mrs. Gilgunn in a comatose state, while hoping for some improvement in her condition. "I find it difficult," he wrote in her chart, "to provide a medical reason to avoid CPR that is as powerful as their desire to have it done."

On the first day of the next month, the new attending, Dr. William Dec, met with Joan Gilgunn to impress on her that her mother could not be saved and would die soon. Ms. Gilgunn continued to insist that everything be done and that the CPR status should remain unchanged. Unwilling to provide "futile" treatment, Dr. Dec turned for another review of the case to Dr. Cassem, who again endorsed a DNR order because CPR would be "medically contraindicated, inhumane, and unethical."

Although the Optimum Care Committee has been described as the hospital's ethics committee, with the role of mediating such disputes, in this case it operated solely in the style of medical consultant. Dr. Cassem never met with Ms. Gilgunn and the conclusions he entered in the chart were apparently based on his personal evaluation of the patient's condition rather than arising from any multidisciplinary committee deliberations of the type usually associated with hospital ethics committees.

Joan Gilgunn had angrily left the meeting with Dr. Dec and gone to her mother's bedside (where she called a Catholic priest on the hospital chaplaincy to come to administer rites, since the physicians had said her mother had only days to live). She never spoke to Dr. Dec again, although she did communicate with the nurses for a while and on 3 August gave another physician permission to place a central line. Instead, she went to the probate court to complain. After being told she needed a lawyer's assistance to get help from the court, she called several without finding one who would take her case.

Free to Act in "Best Interests"

Meanwhile, two days after entering the DNR order, Dr. Dec spoke with the hospital's legal office, which told him he was "okay" legally; as long as he was acting in the patient's best interests he could withhold CPR and long-term mechanical support.

Regarding his patient as "a dying woman" with "a few days, a week, two weeks" before an "inevitable end," on 7 August Dr. Dec began weaning Mrs. Gilgunn from the respirator by turning down the rate at which it supported her breathing. Usually when this is done with the intention of establishing whether a patient is capable of breathing on her own, the patient's blood gases are monitored to make sure that any slowing of the rate does not have an adverse effect. But in Mrs. Gilgunn's case, no monitoring was carried out because the withdrawal was not intended to establish Mrs. Gilgunn's ability to survive on her own.

Proving the physician's actual intent required a good deal of courtroom sparring between Donald McNamee, attorney for the plaintiff, and Dr. Dec:

Q So it's fair to say that there was another motivation or another reason than standard weaning in this case, wasn't there?

A We were withdrawing a level of support that was not medically indicated, yes.

Q It was keeping her alive, wasn't it?

A It was postponing her death.

Q This was basically to take away her life support, right?

A This was to take her off ventilatory support, yes.

Q And her ventilatory support was life support, wasn't it, at that time?

A As I said, I didn't know whether she would survive off the ventilator or not.

Q But there was no medical treatment reason to do that, was there?

A Medical, no.

Rather, as Dr. Dec eventually testified, "The intent was to have her go out with some dignity and to have her not on a respirator at the time she died." Dr. Dec also asserted that he did not feel the need to obtain consent from Joan Gilgunn or any other surrogate for the DNR order or for the respiratory weaning.

Three days after the weaning began, Catherine Gilgunn's breathing ceased and she died on 10 August 1989, at a time when Joan Gilgunn claims she had communicated to the hospital social worker that a rehabilitation facility might be willing to accept her mother's transfer.

Winning Cases vs. Making Law

Even this brief description of the case shows why Gilgunn cannot be treated as a straightforward instance of "futility." The defendants provided the jury with many ways to regard Joan rather than themselves as the cause of all problems. For instance, after 1 August, had she not withdrawn from discussions with Dr. Dec, meaning that she stopped voicing her protests? Also, she never obtained a court order, nor completed the process of transferring her mother to another facility. Moreover, did not Dr. Dec claim to have spoken to someone at Mr. Gilgunn's home on 7 August (he was never clear who, male or female, and had not entered anything in the chart) to notify the family of the weaning? Finally, the defendants suggested that another sister--who agreed to the DNR status--had supplied consent, and Dr. Dec even suggested that Mrs. Gilgunn's wishes were not entirely clear because they were conveyed via Joan, and "wanting everything done ... has different meanings to different people.... What is everything done? Does that mean that she wanted CPR? Did she want ventilatory support? Did she just want to get very good medical care?"

Plainly, if any of these contentions were believed by the jury (and the verdict form only makes clear that the last was rejected), Gilgunn cannot be seen as a test of the proposition that physicians may forgo treatment they believe to be futile without regard to the wishes of the patient or the family.

More significant than these points of doubt on peripheral matters that attorneys are wont to raise, the central theory of the case, as framed by the defendant's ethics expert, John J. Paris, S.J., and as stated in the jury instructions, created an even greater obstacle to treating Gilgunn as establishing that physicians have the authority to forgo interventions unilaterally based on an assessment of lack of sufficient benefit.

Through Father Paris's testimony, the defense did introduce the 1991 position paper of a bioethics task force of the American Thoracic Society on life-sustaining therapy. Like most such statements, the ATS position principally responds to the predominant problems of the 1970s and '80s regarding life support: the reluctance of medical professionals to honor requests to terminate life-sustaining interventions made by competent patients or surrogates for patients who lack decisionmaking capacity. But the ATS document goes further and holds that life support "can be limited without the consent of patient or surrogate when the intervention is judged to be futile," defined as an intervention "that would be highly unlikely to result in a meaningful survival for the patient.... Survival in a state of permanent loss of consciousness...may be generally regarded as having no value for such a patient."(3)

This is the strong version of futility. Here, it consists of three parts: first, that a judgment of futility can be based on physicians' subjective sense of what sorts of outcomes are valuable for a patient; second, that the ATS views permanent unconsciousness as a state usually lacking in value; and third, that making physicians provide care under such circumstances would undermine the profession's ethical integrity.

Had the trial been based solely on the ATS position, the jury's verdict for the defense would provide the first clear indication that society might be willing to accept an expansive view of medical authority to limit care at the end of life for reasons other than patient autonomy.

Yet when testifying that "the care and treatment rendered in August of 1989 met accepted standards of medical ethical practice," Father Paris explicitly premised his conclusion on the assumption--drawn from his reading of the medical record and from the testimony of the treating physicians--that the ventilator and CPR "could not produce the desired physiological change."

This is the weak version of futility, akin to the position that physicians need not even offer those interventions that are irrelevant to the patient's condition in a pathophysiologic sense. The weak version of futility takes notice of the fact that certain interventions may prima facie be relevant to a class of patients--such as resuscitation being relevant to patients whose breathing and heartbeat have ceased. But it holds that the particular circumstances of a patient may render the intervention "futile" because the extent of impairment is beyond reversal.

This is the view taken in the Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and in the so-called Appleton Consensus guidelines on forgoing life-prolonging treatment. In the Gilgunn case, the physicians further concluded that the use of CPR would not only be ineffective but would be harmful in the sense of bringing about Mrs. Gilgunn's death in a brutal way.

When combined with the judge's instruction to the jury that treatment is futile if it does not provide cure, the jury's finding that the care withheld from Mrs. Gilgunn was futile is hardly surprising, but also of no relevance to the important task of developing public policy on the acceptability of physicians' following counsel of the type offered by the Thoracic Society--namely, that they are entitled to withhold care that does not offer sufficient likelihood of producing a "meaningful" existence for their patients.

The Real Lessons of Gilgunn

Because the part of the plaintiff's case in Gilgunn that went to the jury was based on the claim that the defendant's conduct had negligently inflicted emotional suffering on Joan Gilgunn, the real harm involved in the case went unaddressed: that the hospital at that time lacked adequate procedures to resolve the dispute between the family and the physician in an appropriate fashion and to maintain the treatment modality preferred by the patient until the issue was resolved by transfer of the patient or by judicial determination that the choice made by the surrogate was not binding under the circumstances.

Although Father Paris quoted from the AMA's Code of Medical Ethics and the President's Commission's report on forgoing life-sustaining treatment, the clear statements in both concerning the limits on physicians' right to make unilateral decisions were not explored. "Health care professionals and institutions may decline to provide a particular option because that choice would violate their conscience or professional judgments," but as the President's Commission cautioned, "in doing so they may not abandon the patient" and "should go to court" if the dispute cannot be resolved.(4)

These standards were not followed here. It may well be that most people faced with Catherine Gilgunn's circumstances would not choose to remain even another hour on a ventilator or to be subjected to CPR when their heart or lungs stop. And it may even be that an overwhelming majority of physicians--despite years of using life support on such patients--have today reached the conclusion that such practices are unethical because they do not provide a "meaningful" existence or a "dignified" manner of dying.

But to allow Mrs. Gilgunn's physicians to impose this view, however widely held, on their patient is the equivalent of allowing them to abandon the patient. While it is troubling that this action received apparent sanction from the jury, it is hardly surprising since Judge David Roseman, echoing the now discredited language of Quinlan, instructed the jury that "the state's interest in pursuing life is high when human life can be saved and where the afflictions are curable, but wanes when the afflictions are incurable."

We still need means--through public hearings and even through court cases where the issue is more clearly put and resolved--to reach a social consensus on whether health professionals should have authority to decide, among the interventions patients (or surrogates) will accept, which will actually be provided and which they may withhold based upon their evaluation of the worth of the outcome. When we come to adopt such policies, we would do well to ponder long and hard before adopting a utilitarian measure that affords the waning lives of the most vulnerable in our society less protection from unilateral decisions by powerful professionals.

References

(1.)Gina Kolata, "Court Ruling Limits Rights of Patients," New York Times, 22 April 1995, p. 6.

(2.)Super. Ct. Civ. Action No. 92-4820, Suffolk Co., Mass., verdict, 21 April 1995.

(3.)American Thoracic Society, "Withholding and Withdrawing Life-Sustaining Therapy," Annals of Internal Medicine 115, no. 6 (1991):478-85, at 481 (emphasis in original).

(4.)President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (Washington, D.C.: U.S. Government Printing Office, 1983), p. 3.
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Title Annotation:right to die
Author:Capron, Alexander Morgan
Publication:The Hastings Center Report
Date:Jul 1, 1995
Words:2770
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