By Ryan Abbott
Historically, death has been a very simple and intuitive thing to understand – it occurs when someone stops breathing and their heart stops. Visually, it is a dramatic change that anyone can comprehend.
However, we now live in an age where machines can keep people breathing, and their hearts beating, when they would otherwise die. These medical advances have been revolutionary, and they are vital to allowing living patients to recover after severe illness or injury. On the other hand, they can make it more difficult for people to accept and understand death, because it can make dead patients “appear” alive.
Brain death refers to the irrevocable loss of all functions of the brain, including the brainsteam. Someone with brain death is just as dead as someone who has stopped breathing and whose heart has stopped. Doctors confirm brain death through a neurological examination, and once diagnosed the patient is dead. That person will never have any brain functioning and will never return to life or “wake up.”
That, of course, is a difficult concept to explain to people without medical training, and who don’t understand how the brain and body work. To family members, a loved one with brain death on life support has some of the features they associate with being alive. For example, a video now circulating online that purports to show Jahi McMath responding to stimulation may simply demonstrate that some reflexes may persist after brain death, such as a Babinski’s reflex that causes the big toe to move upward while the other toes fan out in response to the sole of the foot being firmly stroked. Grieving family members are, understandably, sometimes unable to accept a diagnosis of brain death.
However, as a physician and scientist, I can tell you that there is no murkiness in the concept of brain death. If there is something being learned from these tragic cases, it is that medical professionals sometimes do a poor job with public education and outreach. The scientific community, the media, and politicians should speak with a united voice to explain that when someone is brain dead, there is no hope of them returning to life. Alas, end-of-life issues are not discussed nearly enough, and worst, even when they are some politicians have provided misinformation for political reasons or due to ignorance.
Brain death is universally considered death by the medical profession. However, the issue is not treated uniformly by state laws. Most states have adopted a model law, the Uniform Determination of Death Act (UDDA), which states, “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.” California and Texas have both adopted definitions consistent with the UDDA, as should all states. Universal adoption of the UDDA would be helpful for improving public understanding of death.
As to who decides whether life support should be provided to a brain dead patient, both California and Texas permit physicians to withdraw life support from dead patients, and legally protect doctors from doing so when death has been properly diagnosed. It doesn’t benefit anyone for brain dead patients to be kept on life support indefinitely – not the patients, the families, or society. It should also be recognized that we have limited medical resources, and that the medical care going toward a patient who is already dead could be used to benefit someone with desperate need.
This post is part of The Union-Mt.Sinai Bioethics Program’s Online Symposium on the Munoz and McMath cases.
I’m surprised that, in the discussion on this blog, nobody mentions or takes seriously the powerful arguments that have been made by Truog, Miller and Halpern about brain death and the “dead donor rule.” (see, e..g. https://www.ncbi.nlm.nih.gov/pubmed/24088088 and https://www.ncbi.nlm.nih.gov/pubmed/22425866)
They start by suggesting that, contrary to the assertions that have been repeated in this blog discussion, brain death is not biological death. They write, “Patients meeting criteria for brain death were originally considered to be dead because they had lost “the integrated functioning of the organism as a whole,” a scientific definition of life reflecting the basic biologic concept of homeostasis. Over the past several decades, however, it has become clear that patients diagnosed as brain dead have not lost this homeostatic balance but can maintain extensive integrated functioning for years. Even though brain death is not compatible with a scientific understanding of death, its wide acceptance suggests that other factors help to justify recovery of organs.”
They then discuss how the process known as “donation after cardiac death” uses a similar sleight of hand to preserve the idea that we only take vital organs from people who are “dead.” In DCD, they write, “For many such patients, circulatory function is not yet irreversibly lost within this timeframe — cardiopulmonary resuscitation could restore it. So a compromise has been reached whereby organ procurement may begin before the loss of circulation is known to be irreversible, provided that clinicians wait long enough to have confidence that the heart will not restart on its own, and the patient or surrogate agrees that resuscitation will not be attempted (since such an attempt could result in a patient’s being “brought back to life” after having been declared dead).”
They conclude that, “Reasonable people could hardly be faulted for viewing these compromises as little more than medical charades.” And go on to argue that our charade-like efforts to preserve the “dead donor rule” for transplantation have led to practices that make no sense.
In Munoz and McMath, nobody was considering organ donation. But these cases, and the controversies over brain death, are collateral confusion from the policies that were instituted primarily to facilitate organ transplantation. Disentangling the threads might allow a more honest assessment of what is at stake. The net result would be that 1) it may be possible, as Truog and Miller argue, to expand the pool of people who would be eligible to donate organs. That is, it would no longer be limited to people who meet neurologic criteria for death. Instead, “patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement. Rather, by blocking reasonable requests from patients and families to donate, the (Dead Donor Rule) both infringes donor autonomy and unnecessarily limits the number and quality of transplantable organs.” And 2) patient and family preferences would be the deciding factor about decisions to continue ventilatory support for patients who meet current criteria for brain death – as they are today for people who might criteria for coma, PVS, and other devastating and irreversible neurological injuries.