The blue and green lines darted across the telemetry screen. The blue line, Trevor’s oxygen saturation, traced a steady sinusoidal wave, while the green line, his heartbeat, galloped along in a normal sinus rhythm. The white line, his respiratory rate, was an unwavering flat line fixed at zero.
Brain Death Assessments with Apnea Testing
Apnea testing is an important component of the brain death exam. The patient is disconnected from the ventilator and is observed for signs of spontaneous respiration. The inability to initiate a breath indicates brainstem dysfunction. The apnea test along with other tests of brainstem reflexes are used to diagnose brain death.
Trevor’s mother watched the telemetry screen intently. She had already asked us all her questions and knew the meaning behind every line on the screen and every line in his body. She sat in the chair on Trevor’s left side and clasped his left hand, the one body part untethered to medical chains: peripheral intravenous catheters on his right arm; an arterial line in his right radial artery; a large central venous catheter in his right internal jugular vein; EKG leads crisscrossed over his chest; nasogastric tube, Foley catheter and rectal tube.
The white line stood still like a motionless arrow, a solution to a cruel Zeno’s paradox. The non-existent respiratory rate confirmed what we all suspected, that Trevor’s brain had forgotten the most reptilian of its functions – how to breathe. Trevor’s mother watched with a pleading maternal hope; she occasionally squeezed his left hand, attempting to communicate with him, coach him, motivate him, offer him guidance. Our medical team watched along with his mother but without the unassuming beauty of her hope. Instead, we watched as a ritual. We already suspected the answer; by now, we had a different set of questions. We waited in the uncomfortable stillness punctuated only by the alarms and beeps that formed the soundtrack of the intensive care unit. As the five minutes passed, the respiratory therapist performed her acrobatics over the lines and tubes to obtain the arterial blood gas and to restart the mechanical ventilator.
Trevor’s mother’s eyes moved from the telemetry screen back to her son’s body. His heart was beating; his chest would rise and fall with each ventilator delivered breath; his dark skin was warm to the touch without a hint of decay; his urine dribbled into the Foley bag. She struggled: with so many signs of life, how could Trevor possibly be dead?
The distinction between life and death seems obvious, simplistic, not requiring a physician’s assessment. However, the transition from life to death is a complex, nebulous process. History is rife with misdiagnoses of death leading to premature burials, even to this decade. Historically, the fear and perceived commonality of premature burials led to devices such as safety coffins – a method for the mistakenly buried to escape a Poe-esque fate. This is not to suggest that our predecessors lacked in procedures to determine death. Physicians always carried an arsenal of tools to determine death, from physical signs we continue to use to this day (fixed dilation of pupils, lack of a pulse) to more antiquated tests (Monteverde’s sign – the subcutaneous injection of ammonia to assess for skin changes; Cloquet’s needle test – plunging of a needle into the bicep muscle and examined for signs of oxidation)1.
In 1819, the invention of the stethoscope opened a window into the previously inaccessible human body. With the stethoscope, doctors were able to auscultate the heart and lungs to confirm cardiopulmonary death. Of course, the concept of the heart and lungs as final arbiters of mortality became complicated with the advent of cardiopulmonary resuscitation (CPR). The first case reports appeared in 1868: John Hill, a British dentist, published a case series on three patients with cardiac arrest who he resuscitated with external compression of the heart2. By the middle of the 20th century, CPR was widely accepted practice in the medical community. By the 1960s, physicians were performing heart and lung transplants. With increasing advances in life support, organ transplant, and critical care technology, patients could be supported for prolonged periods after cardiopulmonary arrest; as a society, we needed to revisit our definition of death.
The Uniform Determination of Death Act (UDDA) was passed in 1981 and expanded the definition of death to include irreversible cessation of all functions of the entire brain (including the brainstem) as an alternative to traditional cardiopulmonary death. Since its passing, it has been adopted in some form by most states. Although medical and legal professionals have accepted this standard to determine death, society has not. The heart is regarded as the seat of the soul in many cultures. From the ancient Egyptian word ib to the Sanskrit word hrdaya, the heart does not just refer to the four-chambered organ behind the sternum; instead, the definition of the heart is entwined with notions of the soul, mind, and self.
The public’s struggle with the concept of brain death is in the national spotlight with numerous legal cases such as the Jahi McMath case in California3,4. Jahi was thirteen years old when she underwent what was supposed to be a routine ENT surgery, and subsequently suffered massive post-operative blood loss and cardiac arrest. Although there was return of circulation, the cessation of blood flow during the arrest had resulted in brain death. As per California law, the physicians could legally declare death and take Jahi off life support. However, her family refused to accept the declaration of death by neurological criteria, and initiated legal proceedings to continue life support for Jahi. Eventually, Jahi was transferred to a hospital in New Jersey – one of two states which allow families to reject a brain death diagnosis on religious grounds. She was ventilator dependent and received nutrition through a feeding tube for the next five years until she was removed off life support and succumbed to cardiopulmonary death. Since this case, there has been an increase in cases where families reject a brain death diagnosis. The medical and legal systems continue to struggle in the balance between respecting a family’s wishes and providing futile care.
Perhaps objective physiological reasons for adopting brain death could satisfy the public, but in reality there is no strictly objective definition of death. As a society, we require an intersubjective-ly agreed upon definition founded on scientific, legal, ethical and philosophical principles. Death can be defined at different structural levels of biological existence. To take a definition to its logical extreme, death could be defined at the cellular level: death is the cessation of all biological activity in every one of the forty trillion cells in the human body. The absurdity of a cellular definition of death is apparent since there may be isolated cellular activity even after putrefaction. Instead of the cellular level, death could be defined at the organ system level: death is the cessation of activity in all organ systems. The preservation of a working liver without functional heart, lungs, and brain reveals the absurdity of this definition as well. Death could be, and has been, defined as the cessation of specific vital organ systems – as we discussed this used to be the cardiopulmonary system and now includes the brain. Alternatively, others argue that death should be defined at the level of the “organism as a whole”.
The longest “survivor” after brain death (survivor in terms of survival to cardiopulmonary death) was a male patient born in 1979; he acquired meningitis at four years of age and soon decompensated and suffered massive brain destruction. He was declared brain dead but his family opposed removal of life support. He was ventilator dependent for the remainder of his life, and received feedings through a gastric tube. He “lived” for twenty years until a cardiac arrest in 2004; his autopsy revealed that in place of his brain was a calcified structure filled with disorganized and proteinaceous materials without any neural elements5. Despite having no remnants of a brain, he had had a working endocrine system and had developed some secondary sexual characteristics of puberty, a working musculoskeletal system and had continued to grow, an intact immunological system and had continued to fight off pathogens and infections, and a functioning heart that had continued to beat for twenty years. Although his brain had died, he continued to exist as a structurally integrated organism (or “organism as a whole”) with continuity of integrated life processes. Dr. Shewmon and others posit that death cannot be established by brain death criteria, since even in brain death there is evidence for the continued existence of a structurally integrated organism6.
Now, there is room for a biological debate on whether to define death at the level of vital organ systems (heart, lungs, brain) or at the level of the structurally integrated organism. However, this debate would miss the point that death is not a tangible event that occurs at a singular point in time. Death is a process, an irreversible entropic descent. The time that the death process takes can vary: in a meta-analysis of 175 “chronic” brain death cases, Dr. Shewmon demonstrated that, on life-support, these patients “survived” for weeks to months and on three occasions (including the meningitis patient) “survived” for years7. I would argue that “survival” in this situation represents a prolongation of the death process since there is no potential for or evidence of “meaningful” recovery – there is no escape from the entropic descent. Having used the word “meaningful”, I have made a value judgment. However, I am defining “meaningful” in very conservative terms as either: the return of consistent or sustained interaction or the freedom from ventilatory support. There is no evidence in this meta-analysis or in any other case report of a patient having “meaningful” recovery after brain death. An alternative viewpoint could be that we as a society cannot make this value judgement on “meaningful” recovery. However, I argue that for philosophical, societal and utilitarian reasons, a minimal societal standard for life is necessary. Brain death seems to be the most reasonable criteria to define death in patients on advanced life support.
Without public awareness of and education on brain death, many will tend to gravitate towards the structurally integrated organism or “organism as a whole” approach to define death. In Jahi’s case, several months after the diagnosis of brain death, she began menstruating. This process suggests that “life” was persisting at the level of a structurally integrated organism just as was noted in the patient with meningitis. A patient’s growth and maturation is very difficult for a family to reconcile with death. Families are left distressed when they sense that everything else besides the brain is working. It is important to acknowledge the visual inconsistencies between the patient’s working bodily functions and the diagnosis of death, and it is imperative to emphasize to the family the role that artificial life support is playing in sustaining these bodily functions. In order for a patient’s family to understand and accept brain death, we also need to be mindful of our own language in describing brain death. The patient shouldn’t be referred to as being “brain dead” or experiencing “whole brain death”, the patient should be referred to as having died. We must be mindful of our word choices that may purport a dichotomy between brain death and somatic death. For instance, the phrase “patients die very soon after brain death” gives the impression that brain death and somatic death are two different types of death instead of sequential occurrences in the death process. Communication and building trust with patients’ families are very important in these situations. Many legal cases where a family refuses to accept a diagnosis of brain death appear to stem from an initial antagonistic relationship between the medical team and the family.
All of this was on my mind as we performed the apnea test. I didn’t know Trevor, but I got to know his mother. Her name was Gina. The hospital room took over Gina’s life, and in turn, she took over the hospital room: she brought a Keurig, two suitcases, an IPAD, and Trevor’s backpack. There were two books in his backpack the day of the accident, and she decided they must be his favorite books and read them over and over to him. She would ask Trevor to squeeze her hand every couple minutes and would react enormously to the slightest movements. She would yell for the nurses and physicians, and have her heart broken as these movements were explained to be spinal reflexes. Gina spent most of her time in a quiet, meditative vigil, always seated in the chair on Trevor’s left side and holding his left hand, while nurses, respiratory therapists, and doctors buzzed in and out.
Gina cried often: once while hugging her cousin who came to visit from Canada; once after the neurologist told her the results of Trevor’s EEG; but mostly she cried during those silent pauses in the middle of the night when a heavy, existential solitude would creep into the room and leave an aching void in her stomach. During those moments, she would align the tubes and lines just right and lay her head on Trevor’s warm chest to listen to his heartbeat.
The distinction between life and death will continue to be debated between the vital organs and “organism as a whole” level. It will be argued on biological, legal and philosophical grounds, and in religious and societal contexts. Gina didn’t need to engage in a metaphysical discussion over the subtleties of life and death. She didn’t want to be handed a canvas colored in shades of gray, an abstract expressionist painting for art critics to deconstruct and decipher. Gina wanted an answer. Eight hours passed, and the repeat apnea test confirmed what we all knew by then. Gina had moist eyes and wore a strained smile as she sat stroking Trevor’s hand. My eyes apologetically met her heartbroken gaze. With one question, she asked, answered, and summarized the truth better than I knew to convey it: “My Trevor ain’t in there no more?”
Telemetry screen of a patient undergoing apnea testing to confirm brain death.
19th century patent for burial vault designed to avoid premature burials: “It will be seen that if the person buried should come to life a motion of his hands will turn the branches of the T-shaped pipe B…A supply of air sufficient for allowing the person…to breathe freely enters the coffin through the pipes and will keep him alive till help arrives.”
The history of cardiopulmonary resuscitation. Resuscitation cases have been reported since the 18th century, with one of the earliest case series published in 1868.
Sacred heart of Jesus by Italian painter Pompeo Batoni. Various cultures throughout history have viewed the heart as the seat of the soul.
- Scott, R. Gould and Pyle’s Cyclopedia of Practical Medicine and Surgery. Philadelphia: P. Blakiston’s Son & Co.1912. Google Books, https://books.google.com/books?id=fB8TAAAAYAAJ&source=gbs_book_other_versions.
- Hill, J.D., 1868. Observations on some of the dangers of chloroform in surgical practice, and a successful mode of treatment. Br J Dent Sci, 11, pp.355-8.
- Luce, J.M., 2015. The uncommon case of Jahi McMath. Chest, 147(4), pp.1144-1151.
- Paris, J.J., Cummings, B.M. and Moore, M.P., 2014. “Brain Death,”“Dead,” and Parental Denial: The Case of Jahi McMath. Cambridge Quarterly of Healthcare Ethics, 23(4), pp.371-382.
- Repertinger, S., Fitzgibbons, W.P., Omojola, M.F. and Brumback, R.A., 2006. Long survival following bacterial meningitis-associated brain destruction. Journal of child neurology, 21(7), pp.591-595.
- Shewmon, D.A., 1997. Recovery from “brain death”: a neurologist’s apologia. The Linacre Quarterly, 64(1), pp.30-96.
- Shewmon, D.A., 1998. Chronic” brain death”: meta-analysis and conceptual consequences. Neurology, 51(6), pp.1538-1545.
- United States. President’s Commission for the Study of Ethical Problems in Medicine, Biomedical and Behavioral Research, 1981. Defining Death: A Report on the Medical, Legal and Ethical Issues in the Determination of Death. The Commission.
- President’s Council on Bioethics (US) ed., 2011. Controversies in the Determination of Death: A White Paper of the President’s Council on Bioethics. Government Printing Office.
- Wijdicks, E.F., 2001. The diagnosis of brain death. New England Journal of Medicine, 344(16), pp.1215-1221.
- Capron, A.M., 2001. Brain death—well settled yet still unresolved.