The Commission has a point. Some of us would say this isn't so new - until we remember that the entire field as we understand it is new, less than a generation old. For much of the public, informed largely by the news media (and by the hype media that masquerades as news), this is indeed new, or at least not fully thought through. It is poignant right now. Saint Luke’s Episcopal Hospital of Houston, a ministry of the Diocese of Texas, is currently involved in such a case, as is the University of Kansas Medical Center in Kansas City, Kansas. Each institution feels close to me – too close for comfort – if for different reasons.
"Futility" is the word that comes up in end-of-life care when the providers feel that any care that might be offered will not provide the patient anv benefit. The concern expressed in the report is for the protection of the patient: “In general, Futile Care Policy (sic) means that a hospital can make a decision regarding the likelihood of a patient’s recovery, and may conclude that further treatment is futile. That decision can then be conveyed to the patient’s family. If such a policy is in place, the hospital has the right to discharge that patient and it is not a policy that would be advertised.” The concern is, of course, that the hospital is making this decision, and can act, without consultation with the family. More pointedly, there is concern that physicians and/or hospitals can make a decision to withdraw care, allowing the patient to die, without consultation with the family, and regardless of the wishes of the family and, possibly, of the patient.
And why would hospitals or states make this decision? The report in the Blue Book states that this is "fueled by the rising costs of medical care," and this is certainly not irrelevant. Costs are rising; and while we do not like putting a price on a human life, resources are limited, and those spent on one patient who cannot benefit cannot simply be recovered for a patient who can. But it is also, I think, fueled by a conviction that prolonging physical function for a patient beyond a point of meaningful recovery and life is a violation of the patient's dignity, if not actually cruel.
In the medical ethics literature, this is a difficult subject. There does not seem as yet to be a consensus in medical practice about how to determine that care is futile. A policy paper of the American Medical Association describes a process for addressing issues when care is futile, but does not set a standard for futility. Lawrence J. Schneiderman, MD; Nancy S. Jecker, PhD; and Albert R. Jonsen, PhD, scholars of the University of California at San Diego and the University of Washington, proposed a standard for determining futility in the Annals of Internal Medicine (1991 abstract here; 1996 article here) that had both quantitative and qualitative aspects, and that made the important distinction between an intervention’s effect on an organ or system, and an intervention’s benefit to the human patient. The proposal is interesting, and has apparently been a cause for professional discussion; but it doesn’t seem to have been accepted by the profession, much less recognized as a standard of care.
The Episcopal Church has not spoken to futility as such. General Convention resolution 1991-A093 provides the most thorough set of standards for consideration of prolonging care or withholding or withdrawing care at the end of life. At the same time, 1991-A093 helps us see the shift that we are concerned about. It speaks clearly to the right of a patient, or of a patient’s surrogate decision maker, to refuse care at the end of life, to respect a patient’s “right to die.” It even includes a reference to state laws on the subject:
“We therefore express our deep conviction that any proposed legislation on the part of national or state governments regarding the so called "right to die" issues, (a) must take special care to see that the individual's rights are respected and that the responsibility of individuals to reach informed decisions in this matter is acknowledged and honored, and (b) must also provide expressly for the withholding or withdrawing of life-sustaining systems, where the decision to withhold or withdraw life-sustaining systems has been arrived at with proper safeguards against abuse.”
However, the concern at issue now is precisely the converse: does the provider, the physician and/or hospital, have the right to withdraw care, based not on the patient’s wishes expressed directly or through a surrogate, but based rather on clinical criteria and a sense of whether the patient can actually benefit from the treatment. This is not a shift from one’s “right to die” to some sort of “obligation to die,” although some will want to make it seem so. In fact we know that until the Kingdom comes we will all die, and that for all of us at some point there will be nothing more beneficial that can be done. What is still at issue is that understanding of “benefit.” If the patient is brain dead, as documented by neurological and blood flow studies, is ventilator support really of benefit? This is why the distinction between “effect” and “benefit” is so important. The ventilator has an effect: tissues remain oxygenated, and continue after a fashion to function. However, it will not change the overwhelming damage to the brain that means we will never get this person back. We acknowledge in that instance that the patient’s surrogate can withdraw that care. We acknowledge that the physician can decline on moral grounds a request to continue care, and transfer that patient’s care to another physician. In fact we acknowledge that brain death is legal death, and no care is required for the dead.
And what of the case where the patient, in the best experience of physicians, will not recover, though not yet dead, either by brain death or cardiac death. This is where we begin to think about futility. Can the physician acknowledge that there is no further intervention that will benefit the patient? Benefit to what standard? Can the patient or the patient’s surrogate believe that medical opinion, now that it has moved from the abstract to the very personal? What does the family believe, and hope for?
There is still guidance to be found in 1991-A093. It says,
“there is no moral obligation to prolong the act of dying by extraordinary means and at all costs if such dying person is ill and has no reasonable expectation of recovery;” andThese statements are fully consonant with the report in the Blue Book for 2006, as is the concern about the actions of governments on this issue.
“We encourage health care providers who make it a policy to decline involvement in the termination of life-sustaining systems to communicate their policy to patients or their surrogates at the earliest opportunity, preferably before the patients or their surrogates have engaged the services of such a health care provider;” and
“Advance written directives (so-called "living wills," "declarations concerning medical treatment" and "durable powers of attorney setting forth medical declarations") that make a person's wishes concerning the continuation or withholding or removing of life-sustaining systems should be encouraged….”
At the same time, the change in focus is important. Moving from protecting a patient’s right to die to establishing standards for withdrawing care potentially without the participation of the patient or surrogate indeed represents a significant shift – one to which the Church does indeed need to respond.