An ICU Nurse Discusses Brain Death
Aimee Milliken, 01/03/2014

An ICU Nurse Discusses Brain Death

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Brain death is an immensely challenging concept to grasp, even for health care providers. The patients look like any other patient in the intensive care unit; they have vital signs, they are warm, sometimes their extremities even reflexively respond to stimulation. We turn them, we empty their drains, we tend to the machines supporting their bodies. For seasoned ICU nurses, caring for these patients often elicits feelings of moral distress and inner conflict. It is no wonder that families of brain dead patients frequently react to this news with denial: How could my loved one be dead if her heart is still beating? Brain death goes against the traditional image of death in our culture. Nonetheless, brain death is death.

The Jahi McMath case is tragic on many levels. Jahi's body is being maintained via artificial means. As George Annas recently asserted on Here and Now, this is no longer life support, as there is no life to be supported. The very presence of their daughter in a hospital bed is preventing the McMath family from coming to terms with the fact that she has passed. The media sensation and related misinformation surrounding the case has done nothing to benefit the McMath family or the providers caring for Jahi's body: pitting the hospital and providers against the family creates a sense of uncertainty surrounding Jahi's situation, when, in fact, there is complete certainty.

Repeated court orders to maintain treatment, and to delay the withdrawal of the ventilator, are confusing to the McMath family and to the general public. The "support" being offered by the Terri Schiavo Life & Hope Network does nothing but contribute to this false sense of hope that, somehow, Jahi may come back to life.

As a nurse who has cared for brain dead patients, I am empathetic to this emotionally charged scenario. Caring for a brain dead patient is incredibly mentally taxing, even when the family is in complete understanding. When a family is in denial, the distress felt by the health care provider is exponentially increased. We are prolonging the suffering of the McMath family by continuing to ventilate Jahi's body.

It is our duty as providers to ensure that the messages being portrayed to the public about Jahi's case are abundantly clear. We should be talking about "ventilator" withdrawal, rather than "life support" withdrawal. The concept of finding a surgeon to place a tracheostomy and feeding tube in order to facilitate the transfer of her body to another facility, as has been suggested, should not even be entertained. We do the general public (our patients) a disservice by perpetuating misconceptions about the finality of brain death.

Robert Veatch recently argued that as long as the patient isn't suffering the family should be allowed to decide on their own terms when Jahi is deceased. It is true that Jahi is not suffering, but I would argue that continuing ventilatory support  is prolonging the suffering of the McMath family, contributing to the general public’s confusion surrounding brain death, and significantly contributing to the moral distress of Jahi's providers. As Sam Singer, a spokesman for Oakland Children's Hospital,   has eloquently stated: “This is one of the most tragic situations imaginable. A family has lost their young daughter. But unfortunately, Jahi is deceased. No amount of hope, prayer, or medical procedures will bring her back." There is, sadly, no uncertain fate here. 

Aimee Milliken is an ICU nurse in Boston and a student in the Master of Science in Nursing program  at Yale.

Posted by Laura Haupt at 01/03/2014 05:21:39 PM | 

Ms. Milliken criticizes my defense of permitting Jahi's parents to continue ventilation on 3 grounds (1) prolonging family suffering, (2) contributing to public confusion over brain death, and (3) moral distress of providers.

(1) Forcing nontreatment on the family to prevent their suffering is the ultimate in paternalism. We disposed of this outdated Hippocratic reasoning decades ago. It is really offensive.

(2) The public is surely confused about the definition of death. While most of us favor some form of brain-based death pronouncement, a persistent minority of about 10% including some of the wisest minds in bioethics (Shewmon, Truog, Miller, Pellegrino, Gomez-Lobo, and probably Jonas) all reject it in favor of the circulatory or somatic view espoused by Jahi's mother. I fear those who blindly accept whole-brain-based death are the ones who are confused. That position represents a minority once one takes into account those who favor higher-brain views as well as those who favor circulatory views. There simply is no consensus on the definition of death anymore.

(3)Moral distress on providers is a real issue. That is largely resolved now that Jahi has been transferred to care-givers who willingly take on this role. If Jahi's parents have the right to pick a definition of death (such as they would in New Jersey) and they pick the circulatory definition, then Jahi is a living individual with a more or less dead brain (it meets standard criteria but probably still has some residual function). That would make her case much like the classic futile care cases (Baby K, Wanglie, et al.) Generally, those cases have been resolved in favor of the patient's or family surrogate's right to get access to continued life-support even against the wishes of care-givers. Since her care-givers now apparently do not object to providing the care, the point is moot anyway.
Posted by: ( Email | Visit ) at 1/6/2014 2:52 PM

I appreciate Dr. Veatch’s perspective.

Providers who care for largely neurologic patient populations are well versed in the spectrum function that patients with neurologic insult are subject to, and recognize the fact that, even in the absence of reflexes, some neurologic function and/or activity can remain (meaningful or not). As a provider who accepts brain death as death, I maintain that continuing to ventilate Jahi’s body is inappropriate and provides no benefit to the family in their grief process. I am advocating for the respectful and clinically indicated treatment of the deceased.

The McMath family has been afforded the opportunity to contest ventilator withdrawal, and their wishes in this regard have been respected. I hope that Jahi’s family finds peace in the fact that, in their opinion, they have achieved a suitable treatment scenario for her. This does not negate that fact that her providers will not find the same peace with the resolution of this case.

The moral distress elicited by this case, and other cases like it, does not become moot once the situation is resolved. The people that cared for Jahi will likely feel unsettled for some time, and this cannot be brushed aside simply because Jahi’s body is no longer in their institution. Speaking from personal experience, the repercussions of scenarios like this one will have lasting effects on those involved, regardless of the outcome.
Posted by: ( Email ) at 1/8/2014 12:11 PM

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Posted by: ( Email | Visit ) at 7/19/2015 2:01 AM

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