The errant ways we talk about brain death

By Jordan Potter and Jason Lesandrini

On November 4, 2019, newspapers across the USA reported on the tragic and untimely death of Mr. Nebane Abienwi – a 37-year-old asylum-seeking migrant from Cameroon who died in the custody of Immigration and Customs Enforcement (ICE) after suffering a brain hemorrhage. Per an ICE report, physicians at Sharp Chula Vista Medical Center pronounced Mr. Abienwi dead by neurological criteria (i.e. “brain dead”) secondary to basal ganglia hemorrhage on October 1, 2019.

While an unfortunate event altogether, what is additionally unfortunate is how many have framed this story and the language that has been used in discussing this case. “Migrant in ICE custody removed from life support over family’s objections” reads the title of a USA Today article. Similarly, The Hill titled their article reporting on this story as “Family says asylum-seeker in ICE custody was removed from life support against their wishes.” This kind of language and framing is commonplace in reporting on these cases in the popular media – see the extensive coverage of Jahi McMath or more recently Titus Cromer for other examples. Yet while common, this kind of language and framing is inaccurate and confusing and misleads the reader into a specific narrative that is not necessarily aligned with the facts of the case. This is problematic for several reasons.

First, while the language of “life support” is a common colloquial term for many life-sustaining medical technologies (in this case the mechanical ventilator), this language is neither accurate nor appropriate in this context, as Mr.Abienwi was already dead when the medical team discontinued the mechanical ventilator. That is, Mr. Abienwi was previously declared dead by neurological criteria; thus, the ventilator was literally not “supporting life” when it was removed, making the language of “life support” both inaccurate and inappropriate in this context.

The reason this distinction is important is because studies show that the public’s understanding of the concept of brain death is poor, and there exists substantial confusion amongst the general public about what death by neurological criteria actually entails. Every state in the USA, including California where this case occurred, differentiates between two different avenues that human death can occur. The first is death by cardiopulmonary criteria, which is defined as the “irreversible cessation of circulatory and respiratory functions.” That is, death occurs when a person stops breathing and their heart stops beating. This is the traditional concept of death that most people are familiar with.

The second is death by neurological criteria, colloquially known as brain death. Death by neurological criteria is defined as the “irreversible cessation of all functions of the entire brain, including the brain stem.” Today, the practice of determining death by neurological criteria is widely accepted and is a standard medical practice in hospitals across the USA, and every state has legally accepted some form or version of this dual definition of death created by the Uniform Determination of Death Act. It is important to note that to date there is no evidence of a patient ever recovering from a diagnosis of death by neurological criteria when the testing guidelines recommended by the American Academy of Neurology have been correctly followed.

The main reason why there is so much confusion around the concept of brain death amongst the general public largely stems from the simple fact that these patients do not “look” dead. Family members perceive their loved one appearing to “breathe” (as a result of being on the mechanical ventilator), and they see the heart monitors registering heartbeats. These patients appear to be “alive” with these machines sustaining them. But this is the challenge. These patients are not alive – they are legally dead – and the machines are not sustaining their life, but rather artificially sustaining their internal organs.

This phenomenon of the public misunderstanding of brain death has been most thoroughly studied in the context of organ donation, as organs procured from organ donors declared dead by neurological criteria constitute a large proportion of the USA’s transplanted organs. Donate Life America – a large non-profit organization that is dedicated to advancing education and awareness of the importance of organ donation – has found in several national survey studies that confusions around the concept of brain death serve as significant barriers to organ donation registration. In 2009, 2010, and 2011, these surveys found that between 55% and 61% of survey respondents erroneously believed that a person declared to be brain dead could recover from their injuries.

Thus, not only is this language technically inaccurate, it also risks further exacerbating the public’s misunderstandings about the concept of brain death. This only serves to further complicate effective end of life care for those unfortunate patients who do happen to suffer an illness or injury that results in a diagnosis of death by neurological criteria. Further, it also risks harming the national practice of organ donation and transplantation by serving as yet another barrier to organ donation registration.

Second, and more importantly, the use of this type of language and framing of the ethical narrative also misrepresents the facts, leading to a different ethical appraisal of the case. In Mr. Abienwi’s case in particular, while a tragic situation that was further complicated by political issues surrounding his immigration status, it is inaccurate and misleading to state that Mr. Abienwi was “removed from ‘life support’ against [his] family’s objections.” Rather, a more accurate and appropriate description of what happened to Mr. Abienwi that foregoes utilizing the problematic language of “life support” is that the medical team discontinued futile medical treatments after Mr. Abienwi was pronounced dead, as is standard in all cases of hospital deaths involving ongoing medical treatments, technologies, and medications.

The juxtaposition of these two ethical narratives that the opposing descriptions of the story paint is striking. In the first description, the ethical narrative paints the picture of an authoritative and paternalistic medical team unilaterally withdrawing beneficial life-sustaining treatment against a family’s wishes and values – a highly unethical and likely illegal course of events. In reality, though, once patients are declared dead by neurological criteria any remaining medical treatments, technologies, and medications are no longer benefitting the patient and are usually immediately discontinued. This practice is implemented to best respect the fundamental dignity of the recently deceased patient by not continuing needless, non-beneficial, and burdensome medical interventions on their lifeless body. Further, this is largely why in the USA it is not legally required to seek consent and permission from the patient’s family to discontinue these medical treatments, technologies, and medications after a patient is declared brain dead.

Of course, if a family contests the diagnosis of death by neurological criteria or requests more time before discontinuation of the ventilator, most health systems’ policies allow for a period of “reasonable accommodation” to be given to families. This is usually a period of 24 to 72 hours that is meant to give families more time for additional testing to confirm the diagnosis, process this devastating news, and/or give families time to gather at the bedside prior to discontinuation of the ventilator. This standard practice of granting families a period of reasonable accommodation in this manner is widely accepted as ethically appropriate.

Unfortunately, in Mr. Abienwi’s case it does not appear that his family was granted this period of reasonable accommodation. The ICE Detainee Death Report notes that the ventilator was discontinued approximately 2.5 hours after pronouncing Mr. Abienwi’s death, despite the fact that his family reportedly expressed a desire to come to the bedside prior to discontinuation of the ventilator to both see Mr. Abienwi one last time and perform cultural rites on his body. This is inconsistent with the medical team’s ethical (and potentially even legal) obligations to Mr. Abienwi and his family, and this failure to offer reasonable accommodations to this family likely contributed to the negative press emanating from this case, including the loaded and inaccurate language used in the reporting.

Thus, these issues highlight the importance of precise and appropriate language and framing when discussing end of life issues, especially the convoluted concept of brain death. When imprecise and inappropriate language and framing is used to talk about these sensitive end of life issues – whether in the media or with patients and their families themselves – misconceptions and misunderstandings become much more common. This further complicates the already complex process of end of life decision-making and warps and biases the ethical narrative surrounding these issues, which is unfair to all parties involved.

 

Authors: Jordan Potter, PhD and Jason Lesandrini, PhD(c)

Affiliations: Ethics Program, Wellstar Health System, Atlanta, Georgia, USA

Competing Interests: None

Social Media: Twitter – @JPotterEthics and @jlesandr

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