When a loved one suffers a traumatic brain injury and is unresponsive, questions, anxiety and uncertainty can easily overwhelm you. Add the unfamiliar medical terms and recovery predictions thrown about by medical professionals into the mix, and the experience is fraught with frantic and rushed decisions on whether to remove your loved one’s life-support. Together, all of these factors nearly guarantee feelings of helplessness, confusion, and exhaustion.
But do these decisions really have to be made so quickly?
Enter the American Academy of Neurology (AAN). Recently, the AAN released updated guidelines for healthcare professionals in the context of caring for patients with serious brain injury who are intubated (breathing with the assistance of a ventilator) and incapacitated.
The role of an Intensive Care Unit (ICU) is to support such a patient long enough post-injury to allow the brain to stabilize and perform imaging and diagnostic tests to assess the extent of damage. This course of action allows families to decide whether to remove ventilator support and allow the patient to pass away, or provide a tracheostomy (a long-term form of ventilation support) and a feeding tube to allow the patient to move to a different care setting and continue recovery attempts.
In theory.
What really happens in ICU settings, especially in Texas, with a brain injured patient is much more definitive, sweeping, and swift. Texas ICUs typically diagnose patients as having suffered brain death within 24-48 hours post-injury. Such a diagnosis leads to a declaration of brain death, and under Texas law, a declaration of brain death means the patient is legally considered a deceased person, regardless of the patient’s heart still beating and oxygen pumping through his or her body.
So what does the AAN have to say about best practices in diagnosing brain death?
“When discussing prognosis with caregivers of patients with a disorder of consciousness during the first 28 days post-injury, clinicians must avoid statements that suggest these patients have a universally poor prognosis.” In other words, physicians shouldn’t be giving up on a patient’s recovery opportunities until almost a month after their injury. Yet, standard ICU practice is to pull the plug on these patients within 5 days of being admitted to the hospital.
Another lapse in current clinical practice is related to the type of physician who is making the brain death determination. The AAN’s research points to differing prognoses based on the clinician’s “inexperience in examining patients for subtle signs of consciousness….knowledge gaps often lead to overestimation or underestimation of prognosis by nonspecialists.”
The guidance also pointed out that clinicians should inform family members of pediatric patients with brain injuries “that the natural history of recovery, prognosis, and treatment are not established.” In a related peer review article, the authors recognized that “physician approaches to the timing of and recommendations for withdrawal of life-sustaining therapy have a significant impact on mortality from devastating brain injury.”
Given the sheer number of calls Texas Right to Life receives from frantic parents whose children were just declared brain dead in a Texas hospital, to say Texas hospitals are not recognizing the unclear field and instead, and are quick to label a child’s brain injury as brain death is a fair statement.
Brain injuries – both medically and legally – are difficult to navigate, making the guidance from the AAN important to put into practice. Patients and their families are best served when medical professionals take the time to provide all the facts and options. Check out this helpful video for a few pointers on advocating for your loved one:
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