A California case demonstrates again the confusion that exists in these trying situations.
Nailah Winkfield, mother of Jahi McMath, spoke to reporters with her husband, Martin Winkfield, in front of Children’s Hospital Oakland in Oakland, Calif., in December. Doctors had declared McMath to be brain-dead.
The word “death” brings a whirlwind of emotions for all concerned, from family and friends to health care workers.
Add possible uncertainty to the mix with a term like “brain death,” and the situation gets even more confusing for the family.
During such times, the crisper and clearer a health care worker can be, the better. Unfortunately their own uncertainty over such terms adds anxiety to an already emotion-packed situation.
A national discourse continues in the media and academia about this relatively modern situation, but public understanding remains poor.
Recent news reports about a young California girl declared “brain-dead” brings these concerns to the fore. She was brought to a California hospital for routine surgery. What led to her death is unknown to us, but she was declared dead by brain death criteria.
Her family, as expected, went into a state of shock. It would be condescending to say that we can even imagine the anguish this family is experiencing. In this state the family obtained a court order preventing the hospital from taking the patient off machines supporting her breathing until an independent physician could examine her. The independent physician concurred with the hospital physician. The judge accepted the brain-death pronouncement but asked the hospital to keep the deceased on machines.
The handling of this case speaks volumes about the misunderstanding that exists in our society. The need for education of society at large, and especially its professionals, is clear.
Given the relatively infrequent nature of this clinical situation, many residents and other doctors in training will not have participated personally in a brain-death declaration, thus being relegated to getting most of their knowledge from the written word. In most educational programs, there are no adequate teaching sessions dedicated to this important element of modern health care, either. Understanding varies from one health care worker to another.
Brain death is nothing but death by another name. Once a person is declared brain-dead, he or she is dead. If someone dies of a cardiac arrest, we do not call the resulting condition “cardiac death” and wait for the rest of the organs to die.
There is a very clear and stringent medical and legal definition that must be met before a person is declared dead by brain-death criteria. A fundamental premise is to err on the side of life. By the time a clinical conclusion of brain death is reached, there is no doubt that life is not possible. The process includes a very structured and focused clinical exam and a battery of tests by two qualified physicians, independent of each other. Hospitals that deal with these situations have very stringent protocols in place reflecting local law as well as the recommendations of professional and legal organizations.
A common source of misunderstanding is the confusion of brain death with a vegetative or minimally conscious state where life is still present. In a person declared brain-dead, life is absent.
Families could worry about conflict of interest on the part of the health care team when a brain-injured loved one is a candidate for organ donation. But the full undivided commitment of the treating team remains to its patient. To avoid any perception of divided commitment, the physician in charge of the patient’s care avoids engaging in the organ-donation discussions and must be there for the patient and the family. Organ-donation teams, independent of the care team and the hospital itself, are experts in the field of donation and conduct those conversations with the family. Importantly, the discussions have no impact on the decisionmaking of the doctors on the treatment team and are initiated only after the patient is pronounced dead.
Brain death means death. So using the term “brain death” should be discouraged, as it leaves family and friends with the impression that the rest of the body is still alive and creates questions regarding the finality of death. Families think that there still may be measures that can be taken to reverse the situation.
National and local centers of knowledge need to be created to educate the public, physicians and hospitals. Plans and personnel need to be in place to deal with difficult situations when they arise. Curriculum needs to be developed for medical students and doctors in training so they are better prepared to deal with this difficult scenario. These centers should also provide training seminars for physicians in the community.
R.A. Reshi is a professor and neuro critical care specialist at the University of Minnesota.
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