Amber Green is currently a senior in the Emory College of Arts and Sciences, double majoring in Neuroscience and Behavioral Biology and Philosophy. Her majors led her to an interest in neurophilosophy and neuroethics. She hopes to pursue a MA in Bioethics and/or Neurophilosophy and go into a career as a clinical neuroethicist after graduating in May.
Having a family member pronounced dead is a very heartbreaking moment. Be it your pet, your sister, your mother, or your child, the pain you feel when the doctor reports that your loved one has passed away is overwhelming. Doctors know that there are no take-backs once they inform the family of the patient’s death, which is why there are strict procedures for a doctor to follow when declaring someone dead. However, when it comes to “brain death” and the advances of life support technology, these procedures become harder to follow and leads one to ask the question: “More importantly, if the brain is dead, are we dead?”
In Oakland, California, this past year, a 13-year old girl named Jahi McMath had been maintained on a ventilator since an elective procedure to treat her sleep apnea went horribly wrong. Jahi McMath had been pronounced brain dead, yet she had not been taken off of life support. In fact, her parents persuaded a judge to have her life support extended for at least a week past the doctor’s declaration of brain death. Her parents insisted that she is still alive and that taking their daughter off life support is equivalent to killing her. But, who is in the right: the doctors or the parents of Jahi McMath? And whose wishes should we honor?
Brain death, according to the Uniform Determination of Death Act, is a concept used to describe the “irreversible cessation of the entire brain, including the brain stem.” Moreover, in 1968, the Report of the Ad Hoc Committee of the Harvard Medical School stated that brain death is the primary basis for declaring someone dead. If the brain, including the brain stem, is harmed in any sufficient amount, respiratory failure, followed by terminal cardiac arrest will ensue. This is because the brain is the ultimate control center of the body, sustaining the functions of other organs (Pernick 1999). With advances in cardiac life support technology, patients could be resuscitated after a traumatic injury to either the brain or the heart. Also, in order to be viable for organ donation, organs have to be able to function, i.e. the heart should be able to pump blood and beat. But, there is no need for the brain to function for vital organ transplantation. Therefore, with its institution in the University of Pittsburgh in the early 1990s, brain death became an important criterion for declaring death that also allowed for functioning organs for organ donation. Furthermore, it is also speculated by Professor Charles Vincent of Clinical Safety Research in the Imperial College in London that having brain death be a criterion for defining death would take care of the overcrowding problem plaguing hospitals, an idea that is controversial. By permitting hospitals to have a reason to reallocate resources from people like Marlise Munoz, a pregnant mother declared brain dead but being kept on life support by the state of Texas, the hospital provided resources towards patients who might be considered to have better prospects at living and not just living, but living with what by many would be considered a higher quality of life than living dependently on a ventilator.
The quality of life issue raises the question of whose voice do we listen to when making determinations of what quality of life means. Neuroscientists like Adrian Owen have decided to investigate the one voice that has remained unheard and ignored: that of the patient who may be unable to speak or communicate by conventional means. Using neuroimaging and looking at changes of blood flow to certain parts of a patient’s brain who has been determined to be in a vegetative state, Owen has been able to communicate and exchange information with patients in a coma. Studies like these don’t only have the promise of allowing family members to communicate with loved ones who may seem lost to them, they also can identify patients who might respond to rehabilitation, determine the dosage of analgesics by asking about pain, and give voice to patients who might not otherwise be able to communicate their feelings and desires. He has yet to ask, “Do you want your life support ended?” However, he has asked “Are you in pain?” A podcast of his communications with patients who have been determined to be in a vegetative state can be found here.
|From ABC News|
The first patient to communicate with Owen was a 26-year-old patient named Kate Bainbridge. In 1997, a deadly viral infection caused Bainbridge to go into a coma. Using positron-emission topography (PET) to examine a brain area called fusiform face area (FFA), which is activated whenever one sees a familiar face, Owen decided to investigate what would happen to Bainbridge if she saw the face of someone she knew. Bainbridge showed significant brain function according to the neuroimaging data. By 2010, she was in a wheelchair, but otherwise active following rehabilitation. Despite similar responses in other patients in comas, he and his research has still been met with backlash (Cyranoski, 2012). Both scientists and the general public have shown dislike for Owen’s brain imaging on patients in a vegetative state. Owen's method raises many questions for physicians, for it radically changes the standard procedures of the treatment of patients in comas. One question it raises is what type of effect will his research have on a family's or clinician's decision to end a life. “If a patient answers questions and demonstrates some form of consciousness, he or she moves from the 'possibly allowed to die' category to the 'not generally allowed to die' category,” says Owens. This will put the general public in an awkward position when it comes to processing the death of a loved one. Some will be given hope, whereas others will be burdened financially by the prospect of keeping them alive for these not particularly understood signs exhibited by the patient. Also, this leads to the major concern: How much say does the patient have in their death.
Owen is now planning on using an electroencephalogram (EEG) to complement these imaging studies. EEGs also have the advantage of being portable, cost-effective and relatively fast. Owen will examine 25 people a year to prove that this may be a way to communicate with patients in vegetative states. However, one must ask oneself one question: Is this enough to say that what is being seen in a brain image or EEG is an accurate representation of a patient’s desires and needs? Could it possibly be simply an automatic versus intentional response?
|Caption: fMRI images comparing a patient given the diagnosis of existing in a vegetative state to healthy volunteers. All participants in the study completed two imagery tasks under the direction of Adrian Owen. From Owen et al|
Determining death based on brain death is flawed according to both sides of the debate. There is no reliable universal way to determine brain death unless the entire brain has been destroyed and the circulatory and respiratory systems have also stopped functioning. Moreover, people pronounced brain dead can “survive” on life support for extended periods of time. This is because the “survival” of the body is not solely dependent on brain functions; it’s also dependent on circulatory and respiratory functions, which can exist even if the brain is not functioning at all. But is living without brain function, or more importantly a cognitive life, living? As of the present, one year later, Jahi McMath is still surviving with the help of a ventilator. There is even recent videotape footage of her moving her foot and hand at the request of her mother. So is this girl who was declared neurologically dead really dead? Doctor say “yes,” her parents say “no,” and I say the uncertainty surrounding her case makes it better to be safe than sorry to keep her on the ventilator. According to Georgia Law, Statute 31-10-16, death is either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the brain, including the brain stem. Advanced directives will be recognized first and foremost, for Georgia replaced its Living Will and Durable Power of Attorney for Health Care as of July 1st, 2007. Therefore, if a patient were to write both a living will and advanced directive of contradictory orders for what to do in the face of their impending death, the advanced directives will be followed. (These laws can be seen here and here). However, if a person were to undergo Owen’s test and brain activity were to be found, an advanced directive, in the state of Georgia would not be able to be honored. The legal consequences of utilizing such a technology complicate things even further. Furthermore, with all these varying opinions and stakeholders in Jahi McMath’s death declaration, this prompts the question: Who has the right to be involved in this kind of decision anyways?
Owen, A. M.; Coleman, M. R.; Boly, M.; Davis, M. H.; Laureys, S.; Pickard, J. D. Detecting Awareness in the Vegetative State. Science 2006, 313 (5792), 1402.
Caplan, Arthur. "Brain Death Really Is Death." Time. Time, 3 Jan. 2014. Web. 25 Feb. 2015.
Cyranoski, David. "Neuroscience: The Mind Reader." Nature.com. Nature Publishing Group, 13 June 2012. Web. 06 Mar. 2015.
"Organ Donation/ Transplantation." Education Organ Donation / Transplantation End of Life Care: When Is a Person Really Dead? American Life League, n.d. Web. 25 Feb. 2015.
Pernick, M., 1999, “Brain Death in a Cultural Context: The Reconstruction of Death, 1967–1981,” in in S. Youngner, R. Arnold, and R. Shapiro (eds.), The Definition of Death: Contemporary Controversies, Baltimore, MD: Johns Hopkins University Press: 3–33.
Vincent, C. (2012). The essentials of patient safety. Download disponibile all’indirizzo www1. imperial. Ac. uk/medicine/about/institutes/patientsafetyservicequality.
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Green, A. (2015). Is Brain Dead Really Dead? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2015/03/is-brain-dead-really-dead.html