The field of medicine is often considered one of the most objective out there. Medicine relies on testing and centuries of study, which have improved our understanding and ability to treat the ailing human body. But, with all the testing in the world, medicine cannot be entirely clinical. Doctors have to walk a tightrope of balancing the intellectual with the ethical and emotional aspects that come with treating real people. When severe brain injuries lead to brain death, there is a lot more involved than what medical books can teach.
Brain injuries have brought many of the subjective issues associated with medicine and rehabilitation to the public awareness already. With all the media focus on brain injuries in sports, the military, and society as a whole, many are discovering that we do not understand everything about the brain.
The common concussion receives the most amount of attention in the media because they represent the vast majority of brain injuries and can be deceptively dangerous. The majority of people who suffer mild concussions only experience symptoms for a relatively short period. However, following any brain injury, the brain is more vulnerable and any further damage before the brain can heal could be catastrophic.
The doctors caring for these patients are largely taking steps to prevent another injury before the brain is able to repair itself. The types of brain injuries that bring most people to emergency rooms are relatively minor when quickly diagnosed and patients are given time to heal. However, more serious brain injuries present far greater dangers and complexities.
Patients with moderate to severe brain trauma often lose consciousness following their injury, but those who don’t may be placed into a medically induced coma similar to Formula 1 Champion Michael Schumacher, following his brain injury in December. Increased intra-cranial pressure or hemorrhaging from the injury can cut off oxygen to the brain which causes cells to immediately begin dying. Often the best course of action is to prevent as much swelling as possible by inducing an unconscious state through medications to reduce the metabolic needs of the brain. As we saw with Michael Schumacher, surgery was also required to relieve pressure within his skull.
Any time a patient is placed into an unconscious state, whether it is medically induced or being knocked out during the injury, doctors are forced to face emotional and ethical issues that can greatly affect how each case is treated. What will be the outcome? Can this person return to a level of functioning with intervention, rehabilitation and time?
There is widespread misunderstanding about several disorders of consciousness that are associated with severe brain injuries. It isn’t uncommon to mix phrases such as coma, vegetative state, or minimally conscious state without much understanding of what these conditions really mean. For the average person, comas and vegetative states may be entirely interchangeable, while in reality every defined disorder of consciousness has very important distinctions which mean a great deal for those affected.
As defined by Carrie Charney, MS, and Joseph T. Giacino, PhD, a Coma is a state of complete self and and environmental unawareness characterized by the eyes remaining consistently closed, even when stimulated. Vegetative States are differentiated from this condition by the sporadic opening of the eyes, while still showing complete absence of any signs of self-awareness. On paper, the contrast between the two conditions appears slight, but the patient’s response to stimuli can determine a doctor’s plan of action.
Less often, Minimally Conscious States (MCS) are confused with other disorders of consciousness, but it is still minimally understood. Patients in minimally conscious states may appear to be in a coma or vegetative state for long periods, but they are unique for their inconsistent but clearly identifiable moments of consciousness or awareness and ability to respond. To truly be diagnosed of MCS there has to be reproducible evidence of the ability to follow commands, speak intelligently, or effectively show movement in response to stimuli that cannot be explained by reflexes.
These conditions are all united by a common factor. Patients are in different states of unconsciousness, but there is at least a tentative hope for recovery based on measurable brain activity.. Doctors have to balance offering hope to the family and focusing on recovery, while also tempering expectations and handling the current situation. In the case of brain death, medical professionals are placed with entirely different responsibilities.
When all brain activity ends but a patient is kept technically alive through medical and technological intervention, medical staff are tasked with fully explaining the situation to the family of the patient, and helping them begin an incredibly painful path to closure. With brain death, there is no possibility for recovery. It isn’t a coma or a vegetative state.
However, when patients are kept medically alive, there are often complicating factors that make the process anything but simple.
The most notable case that shows how tragic and complicated brain death can be is the recent story of Marlise Munoz. The Texas woman was pregnant when she was found unconscious on her kitchen floor in November, and was declared brain dead by doctors. Doctors and her family asked for her to be removed from life support, but state law required life-sustaining treatment for any pregnant patients. Munoz’s story sparked dramatic controversy and emotion as it played out in the public eye, before she was finally removed from life support on January 26th and her family was given closure.
Munoz’s case was steeped in legal, moral, religious, and ethical questions, but less controversial situations can be equally emotionally complex.
Jahi McMath, a 13-year-old California girl, was declared brain dead on December 12, days after suffering complications during a sleep apnea surgery. Despite being declared brain dead, Jahi’s family maintained their hope for their daughter’s recovery. When medical staff began pushing to have Jahi taken off a ventilator, they fought to keep her on life-sustaining equipment. On Dec. 24, a judge ruled that McMath was brain dead, but the judge gave the family until January 7 to come to a resolution with the facility.
Rather than giving up their hope for their daughter when faced with medical advice coming from the hospital and its physicians as well as a legal death certificate, the family came to an agreement to have Jahi released to an undisclosed medical facility where she is being kept on feeding and breathing tubes.
While it is understandable for the McMath family to be completely dedicated to their faith that Jahi will recover, it would take something resembling a miracle for the young teen to ever come back. Sadly, brain death is beyond the point of no return.. While many disorders of consciousness offer at least the slightest bit of optimism, there is simply no way for the brain to come back from complete inactivity.
As soon as the brain shuts down, deterioration immediately begins. Without blood flow or electricity to function, the brain breaks down until eventually the heart will not be able to continue, even with technological intervention.
Any form of death can be difficult for a family to accept, but brain death presents an even harder challenge. A loved one appears to be just sleeping, but in reality they are already gone. Dr. Paul Vespa, director of neurocritical care at the University of California, Los Angeles, describes the state as “an illusion based on advanced medical techniques. […] The bodies are really in an artificial state. It requires a great deal of manipulation in order to keep circulation going.”
The case of Jahi McMatch also illustrates what can happen if medical practitioners fail to safely balance medical knowledge with more emotional considerations. By several accounts, the medical staff was very steadfast about removing Jahi from life-support, even telling the family that they could do so without family permission, as the girl was already legally dead. The McMatch family, the physicians and the hospital were locked in an untenable conflict.
In the event of brain death, a doctor is as responsible for counseling the family as they are for following the best medical practices. When a family is told their 13-year-old daughter may look alive, but is already dead, doctors shouldn’t be surprised to see resistance or misunderstanding. In fact, denial is the first stage of grief.
Rather than be fixed on immediately working towards removing the patient from life support, the first steps medical staff should take need to focus on guiding the family through these periods in a supportive and sympathetic manner, while also working to explain exactly what has happened to the family. Only those involved know exactly what occurred within Jahi McMath’s hospital, and it would be wrong to villainize the staff who treated her. The events that followed the brain death diagnosis simply show how complex and difficult the situation can be for both sides.
The medical field may have a seemingly infinite number of resources and guidelines for ailments ranging from the common cold to esoteric conditions only a few will suffer, but there is still much that is unknown and there are still some conditions we can do little about. The brain is the most complex organ in a body, and science has only recently began to unlock its secrets. Maybe one day we will find the key to conditions such as brain death, but for now it is most important to educate the public on brain health and safety to prevent as many of these stories from happening as possible.