Ask the Ethicist:
Does anyone actually invoke their hospital futility policy?

Fall, 2005

Question: The clinicians in the Intensive Care Unit (ICU) seek to invoke the hospital futility policy over demands for treatment by the parents of a patient in their unit and ask the advice of the hospital ethicist. The ICU clinicians believe that the parents are insisting on interventions that will merely prolong the dying of their child and seek consultation and assistance from the hospital ethicist in overriding the parents' authority to make medical decisions about life-sustaining treatments.

The child is 14 months old, was delivered prematurely at 24 weeks and now has multi-organ failure. He has MRI findings of extensive hypoxic-ischemic brain injury, dependence on inotropic support for biventricular insufficiency, dependence of mechanical ventilation for chronic respiratory failure from hyaline membrane disease, dependence on parenteral nutrition and a colostomy for short gut syndrome from necrotizing colitis, and dependence on dialysis for chronic renal failure. The clinicians believe the toddler demonstrates evidence of feeling pain and discomfort. However, they have been hampered in their ability to provide complete symptom relief by the parents who believe narcotic analgesics interfere with the child's cognitive development. In multiple family meetings the parents have been told by the ICU attending physician that their baby cannot survive and the interventions he is getting now are simply prolonging his dying. The ICU nursing staff members uniformly support this assessment and have consistently relayed the same prognosis at the bedside. All clinicians agree that the toddler's parents are rational, loving and very devoted to their son whom they visit for 5 or 6 hours every day. The parents both work in the health care field. This is their first child. They remain hopeful and are willing to take their little boy home "in any shape."

Response: The late Supreme Court Justice Potter Stewart once remarked of pornography, "I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description; and perhaps I could never succeed in intelligibly doing so. But I know it when I see it..." ¹ So too with futility. It is difficult to define but we know it when we see it. But how should ethics consultants respond when they "see it"?

Helft and colleagues noted that discussions of futility can be grouped into four categories: attempts to define medical futility, attempts to resolve the debate with the use of empirical data, discussions that cast the debate as a struggle between the autonomy of patients and the autonomy of physicians, and attempts to develop a process for resolving disputes over futility. ² Our Ethics Committee long ago abandoned definitional attempts at futility and instead adopted a procedural approach to futility cases. We agree with others who see attempts to define futility as illusive, for such attempts only expose and exacerbate a clash of values and fail to provide an ethically coherent ground for limiting life-sustaining treatments. ³

Our institution has adopted process over definitional attempts to address concerns about futility. This approach is backed by our hospital policy on futility that was developed over a year long process in 1997, with broad input from the community and with attention to the diversity of individual values and goals. The futility policy is disclosed in the public record and outlines a series of steps in dispute resolution, as well as a mechanism to assist a patient or their family in an appeal process before the court if necessary, and leaves open the possibility of transferring the patient's care to another physician or institution. These features of a futility policy have been deemed essential by other institutions as well. ⁴ Our futility policy culminates in the institution sanctioning "...the unilateral foregoing or removal of life-sustaining treatments" if all previous steps fail to resolve the conflict.

Yet, despite an increasing number of ethics consults on questions of futility we do not invoke our own futility policy. Why? We have concluded that our hospital futility policy is sound in theory but less so in actual practice. First, not placing our futility policy formally in motion on these consults allows a more flexible ad hoc process in dispute resolution. The absence of a formal document that outlines the crescendo in the dispute resolution process when performing a consult on futility, in our experience, paradoxically seems to avoid the aura of an inevitable path to confrontation and thus mitigates a polarization of positions. If the parties are not aware of the trajectory of the formal policy, more room for common ground appears to be preserved. Second, the simple fact is that the mission of a large, academic pediatric medical center does not align with a public confrontation with parents over the benefit of life-sustaining treatments for their child. Third, the low key, ad hoc process outlined above eventually gets us to a point of mutual acceptance by all parties in the dispute. At the end of the day a consequentialist rather than Kantian approach to ethics case consultation on issues of futility is most effective.

Jeffrey Burns, MD, MPH

Chief, Division of Critical Care Medicine
Co-Chair, Ethics Committee Children's Hospital
Associate Professor of Anesthesia (Pediatrics)
Harvard Medical School, Boston, MA

Outcome: After more than a dozen meetings with the hospital ethicist and ethics consult team, the parents and caregivers reached agreement on decision-making about analgesia, concluding that narcotics would be given if the clinicians or parents felt that the child was experiencing discomfort. The parents and caregivers also reached agreement on an order to withhold specifics steps in resuscitation and to withhold further escalation in life-sustaining treatment. The clinicians reported that being able to provide symptom relief to the infant removed enough of their reservations about burdensome treatments to continue to support the parents' medical directives.

Footnotes

¹ Jacobellis v. Ohio, 378 U.S. 184 (1964).

² Helft PR, Siegler M, Lantos J. The rise and fall of the futility movement. N Engl J Med 2000;343: 293-296.

³ Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med 1992;326:1560-1564.

⁴ Halevy A, Brody BA. A multi-institution collaborative policy on medical futility. JAMA 1996;276: 571-574.

in collaboration with
Dartmouth-Hitchcock Medical Center

The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.