The bioethics community has been working on defining the concept of medically futile care for more than a quarter of a century, yet the debate continues. The way in which the current notion of medical futility becomes folded into the proposed healthcare reform bills is at a critical point.
Sophisticated medical technology that is at once life-saving, life-prolonging as well as death-prolonging has created populations which, in the past, would have died simply because the knowledge, the skills, and the technology to salvage them did not exist. Now that it does exist, selective application of these treatment modalities saves some, yet condemns others.
The precise problem in many cases that are presented to bioethics committees is that there is no consensus about which course of action is most correct or which social values are most important. Accordingly, the bioethics committee is a forum through which different values, perceptions and information about treatment decisions can be discussed, assessed and, hopefully, resolved by patients, their families, and the involved healthcare team.
Yet aspects of healthcare reform diametrically oppose and threaten the very existence and purpose of bioethics committees. Along the way, these committees have been characterized as “death panels,” yet the legitimacy of the discipline of bioethics may actually help to solve some of the thornier problems facing healthcare reform.
The case of Baby Boy G illustrates my point:
His mother was 36. She and her husband had delayed starting a family until their careers and finances were “in order”. But pregnancy proved difficult, yet after a third miscarriage and referral to an in vitro facility, she was finally able to conceive. The outcome was anything but expected.
Baby Boy G was delivered prematurely at 34 weeks gestation by cesarean section. He weighed four pounds (1,800 gms) and required a ventilator. Five days after he was born, he developed abdominal distension; X rays revealed necrotizing enterocolitis. The following day, there was evidence of necrotic bowel with signs of perforation. Emergency surgery was performed to remove a small portion of dead bowel and to place a temporary ileostomy.
The child did well postoperatively for three days, then necrotic material was noted at the incision site. When he was returned to the operating room, the surgeon discovered that the entire bowel from stomach to rectum was dead. Certain there was no hope for the child, he elected to close the abdomen. He suggested that the baby be removed from respiratory assistance and allowed to die.
Baby G’s parents understood the seriousness of the illness and gravely accepted that the child would likely die, but they did not want to remove the child from the ventilator. He was maintained on simple IV hydration.
Two weeks later, the Baby G was still alive and no longer required the ventilator. He was taken back to the OR in the hope that some viable bowel would be found, but re exploration proved fruitless. There was no hope that he would ever take nutrition by mouth. Again it was predicted that he would die because of the dead bowel. Bowel and liver transplant were dismissed as impracticable.
One week after this third surgical procedure, a bioethics committee meeting was called to address the question of whether Baby G’s family should be offered the option of total parenteral nutrition (TPN) for the child.
Virtually all pediatric surgical literature recommends that TPN not be given to an infant who will never develop the capability of sustaining oral nutrition. This conclusion has been reached because of the natural history of the central intravenous catheters required to provide TPN. These lines become infected or nonfunctional on a regular basis and must be removed or replaced frequently.
Most infants who have had such therapy over a long period have died within 18 to 24 months from infection or starvation. It is now commonly held that in such cases an early demise in the neonatal period is preferable to the repeated hospitalizations and inevitable death further down the road. Thus Baby G’s parents were advised to forgo TPN.
One should ask at this point what position is supportable by the committee in the event that the parents would opt to save their child? And what arguments would drive the debate?
Are medical futility and financial burden linked if they are separable because of parental preference plus the fiscal ability to bear the cost?
Should “futility” as defined by a pre-certification committee of an insurance plan, or quasi-governmental body such as a Medicare Committee, or an institutional committee such as a prognosis committee, or perhaps should family, friends, clergy, or family physician determine treatment?
The emphasis for bioethicists to date has been to develop guidelines that deal with end of life issues while respecting patient autonomy in health-related decision making independent of the mental capacity or physical condition of the patient and especially addressing the issues regarding the elderly, and, as in the case of Baby G, the very young.
“The trouble with our times,” states Paul Valery, “is that the future is not what it used to be.” The pattern of life used to be much simpler. But advances in medicine and technology together with rapidly changing social conditions, diversity, alternative lifestyles and expectations have now turned what was for centuries a more or less routine life cycle into a source of personal confusion and social debate.
The uncertain prognosis for many recipients of intensive care — whether they be newborn or geriatric, or somewhere in between — raises difficult questions about whether certain lives are of such low quality that they should not be sustained and about who, if anyone, is qualified to make such decisions.
Finally, all of these questions raise difficult issues not only for the affected patients, family, and healthcare professionals, but also for society at large. How can a pluralistic society develop coherent policies on such matters while respecting the plausible, yet conflicting and rationally irreconcilable, viewpoints of many of its members?
In Baby Boy G’s case? The bioethics committee members were unanimous in believing that the family should be offered the option of TPN, even though they also agreed that it was morally acceptable for the family to refuse. The parents opted for a central venous line. Baby G expired 17 months later, after multiple hospitalizations. The parents stated that all of their lives — theirs and their doomed son’s — were immeasurably enriched by the experiences they all shared.
The “best interests” standard was applied. Such issues and decisions clearly are not societal, nor political. They are unequivocally medical and personal.
What are the issues and obligations of a physician viewing any set of medical variables for any patient of any age?
It is difficult to imagine a means to mandate a shift in the focus from protection of an innocent to protection of society’s best interest without the purposeful and intentional conflation of principal. And this brings us back to the issue of morality, medicine and society: what standard applies?
The “best interests” standard ought to apply. The only applicable rule — whether we speak of the elderly or the young — is that if treatment is futile, in that it will offer no potential benefit to the patient and will only impose pain and suffering, that fact must be made clear when presenting options to the patient or family, stressing that whatever the decision, compassionate care to ease pain and suffering always continues.
But this is not and must not become a societal decision even by implication.
Mandates will not solve the dilemma of medical futility; they only make an already difficult process completely intolerable. Legislative action that requires or expects abandonment should be opposed by all physicians.
Protection of the trust relationship with our patients is a societal good that must be preserved and supported. If we do not support a patient’s best interest and autonomy standard, then we physicians have abandoned our principles if not our purposes.
Jeffrey Hall Dobken is an assistant clinical professor of pediatric immunology and allergy at Weill Cornell School of Medicine in New York City.