Correspondence
Withdrawing Treatment in the Persistent Vegetative State
N Engl J Med 1994; 331:1382-1383November 17, 1994
- Article
To the Editor:
In an otherwise cogent editorial (May 26 issue)1 about public-policy alternatives for handling patients in a persistent vegetative state, Dr. Angell makes one inaccurate observation. We agree with her that calling such patients dead would not work, because they simply do not “look dead.” On the other hand, her statement that brain-dead patients have “no signs of life” is mistaken: brain-dead patients receiving mechanical ventilation have spontaneously beating hearts, healthy skin color, warmth, digestion, and metabolism. Some brain-dead patients have “incubated” live fetuses for weeks until they can be delivered safely by cesarean section.
Families of brain-dead patients, as well as the health professionals who take care of them in the intensive care unit or remove their organs in the operating room, find it difficult to ignore these signs of life, even if they accept brain death as death on an intellectual level.2 In fact, health professionals regularly misspeak by saying that brain-dead patients “die” when their ventilators are turned off.
Now that medical technology has teased apart the dying process, we have had to select a time of death when many signs of life do, in fact, remain. For patients in a persistent vegetative state, the most disturbing sign of life is spontaneous respiration. The signs of life in brain-dead patients, though less dramatic, are nonetheless very real and cannot be discounted in human terms, even if we have done so in public policy. The critical philosophical question remains controversial: when do the signs of life no longer represent the life of a human being?
2 ReferencesStuart J. Youngner, M.D.
Elizabeth O'Toole, M.D.
University Hospitals of Cleveland, Cleveland, OH 441061
Angell M . After Quinlan: the dilemma of the persistent vegetative state. N Engl J Med 1994;330:1524-1525
Full Text | Web of Science | Medline2
Youngner SJ ,Allen M ,Bartlett ET , et al. Psychosocial and ethical implications of organ retrieval. N Engl J Med 1985;313:321-324
Full Text | Web of Science | Medline
To the Editor:
Dr. Angell proposes to shift the law's presumption of life in cases involving persons with persistent unconsciousness because “we should instead presume that [such] patients... would not want to be kept alive indefinitely -- a presumption buttressed by public opinion polls.”1 This approach would violate the Americans with Disabilities Act (ADA),2 however, and should be rejected on that basis.
Under the ADA, a patient's eligibility for life-sustaining services cannot be tied to criteria that screen out or tend to screen out persons with particular disabilities. Presuming that persons lacking consciousness would not want life-support services would certainly result in the wholesale exclusion of such persons from health care facilities.
Moreover, one's fundamental right to live cannot be subject to the notoriously fluid, and probably prejudicial, public opinions of others who have not experienced the medical condition at issue. The Oregon Plan, for example, which limits and ranks the medical services covered under Medicaid, initially violated the ADA by rationing medical services according to data from public-opinion surveys indicating the public's level of distaste for the “quality of life” associated with particular disabling conditions. The data had to be expunged and the services ranked again before the plan passed muster under the ADA.3
Just as physicians should not hide behind claims of futility as grounds for removing life-sustaining treatment from unconscious persons, we should not hide behind public-opinion polls either. Both approaches encourage dishonesty by having us believe that medical judgment and patients' choices are the bases of surrogate decision making, when in fact they are not.
3 ReferencesDaniel Avila, J.D.
National Legal Center for the Medically Dependent and Disabled, Indianapolis, IN 46204-35411
Angell M . After Quinlan: the dilemma of the persistent vegetative state. N Engl J Med 1994;330:1524-1525
Full Text | Web of Science | Medline2
42 U.S.C. Section 12101-12213.
3
ADA Analysis of the Oregon Health Care Plan
Web of Science | Medline
To the Editor:
I propose a more nuanced approach as we move to shift the burden, as Dr. Angell recommends, from those who want to discontinue treatment to those who want to continue it.
The Multi-Society Task Force on PVS found very few cases of verified late recovery. Therefore, the time required before the discontinuation of treatment should be placed at 36 months.1 Research shows virtually no verified recovery of any kind after this time has elapsed.
After one year, I would recommend that an interdisciplinary team meet with the patient's available family members and begin the very difficult work of speaking about the multiple medical problems and long-term prognosis. The family should be given counseling support from social services and chaplaincy services as appropriate. People need time to grow into these gut-wrenching decisions about their loved ones.
Most families move through predictable stages (the onset of the condition, acute care hospitalization, placement in long-term care, the passage of time, a level of acceptance, and the decision to discontinue treatment). The staff needs to support families by accommodating their religious and cultural values, helping them struggle with the ambiguity of the persistent vegetative state, and giving emotional support.
If at the end of 36 months there is no change in the patient's condition and the family still insists on continued treatment, I agree that the burden shifts, and the family members should have to justify their position, as Dr. Angell suggests.
For patients with no involved family member or identifiable surrogate, I would suggest that at this time we must continue to provide treatment until a broad-based consensus can be reached on this complicated issue. In many cases the patient does not have the benefit of a loving family like the Quinlans. I am afraid that an automatic presumption in favor of discontinuing treatment would turn us in the direction of the slippery slope.
1 ReferencesJoseph E. Beltran, D.Min.
24932 El Caballo, Lake Forest, CA 92630-40131
The Multi-Society Task Force on PVS
Full Text | Web of Science | Medline
To the Editor:
Legal protection is needed for persons and families who disagree with the social consensus (if and when such a consensus is reached) that the treatment of persons in a permanent vegetative state should be discontinued. In fact, even in the face of almost universal acceptance of the definition of brain death, two states already have laws in place that protect the rights of those who do not hold the majority view that brain death signals the automatic discontinuation of treatment. In New York, regulations require reasonable accommodation of religious or moral beliefs before a determination based on brain-death criteria is completed.1 Similarly, in New Jersey a statute provides an exemption from a definition of brain death when a declaration of death would violate the person's religious beliefs or moral convictions.2
2 ReferencesCharlotte K. Goldberg
Loyola Law School, Los Angeles, CA 90015-3980Author/Editor Response
Dr. Angell replies:
I take the point of Drs. Youngner and O'Toole. Mr. Avila evidently misunderstood my argument. Although I cited public-opinion polls, I do not believe the public should decide whether people live or die. Instead, the polls indicate the statistical likelihood of a person's preference when there is no other evidence. Because the polls show that an overwhelming majority of Americans would not want their lives maintained in a permanent vegetative state, the presumption that individual Americans would want this makes no sense. For this reason, I disagree with Dr. Beltran about the presumption when patients have no family or surrogate, although his overall approach is reasonable. However, a much better basis for a decision is the certain knowledge of what the person would wish, which is why advance directives are so important. In this, I have no essential disagreement with Professor Goldberg.
Marcia Angell, M.D.
