Mixing faith and technology may only prolong the inevitable for brain dead
Finley Boyle, Jahi McMath, Marlise Munoz , Ariel Sharon and Terri Schiavo all have something in common. They all have suffered irreparable brain damage and their cases have raised the ethical question of what to do and when do you say enough is enough?
I have worked in the medical field for over 3 decades and I have seen many horrific situations with traumatic brain injuries from accidents, strokes and other medical conditions. Not one time was it ever cut and dry nor was it ever easy for a family to just “pull the plug”. Should there be more laws and regulations or should it be left up to the local hospital regulations and rulings? That is difficult as each situation and each patient is different.
First of all brain death is not equivalent to persistent vegetative state. In a vegetative state, the center of cognitive functions may be dead while the brain stem, which controls basic life support functions, is still functioning. True death is equivalent to brain stem death. Let’s look at the definitions for several types of brain injuries.
Coma: These patients are alive, but in a state where their eyes are closed. They have a depressed consciousness from which they cannot be awakened. A coma is different from brain death as there are still brain stem responses. There can be spontaneous breathing and non-purposeful motor responses. The person may or may not be on a ventilator to support their breathing depending on other physical conditions. A coma will eventually progress to having a recovery of consciousness, deterioration to a state of chronically depressed consciousness, or brain death. The states of depressed consciousness will be either a vegetative state or minimally conscious state.
Minimally conscious state: These patients are stuck somewhere between being in a vegetative state and being in a coma. There is still a severe alteration in consciousness but with inconsistent occasional behaviors suggesting a level of awareness. There may be occasional purposeful movements, and they may occasionally track motions with their eyes. These cases are the hardest to deal with as the behavior gives the family and caregivers hope for a full recovery, which is unfortunately not usually the case.
Vegetative state: These patients are alive but have extremely impaired consciousness. Their eyes may open spontaneously giving the impression of consciousness however there no awareness of the environment. These patients do not acknowledge their surroundings and are unable to track object with their eyes or speak. They may have some movements however they are non purposeful. (Finley Boyle, Marlise Munoz, Terri Schiavo)
Locked-in syndrome: This is a very cruel condition indeed. It is when a patient is aware and awake but cannot move or communicate due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. This happens due to a basal artery stroke, a head injury, MS, ALS or other diseases. (Ariel Sharon).
Brain dead: These patients are no longer alive. They are considered clinically dead with irreversible damage and cessation of all activity. This would include the entire brain including the in both the brain stem. There may be some spinal cord generated reflexes however they are non voluntary. There is no ability to regulate breathing, and in time temperature, heart rate and blood pressure will be affected without artificial intervention. (Jahi McMath)
Terri Schiavo was the unfortunate case that was dragged in and out of the courts from 1990-2005, here where I live in St Petersburg Florida. She suffered brain damage due to lack of oxygen during a cardiac arrest and went into a coma thereafter. Within months her diagnosis was switched to persistent vegetative state. Despite numerous attempts and extensive therapy she did not recover. Her husband claimed she would not want to live in this state, yet her parents still felt there was hope for their daughter to recover. After many years battling in the courts, she was moved to a local hospice house and was allowed to die. I sat outside that hospice house not to protest for or against her death, but only to pass out advanced directives to people so that their wishes could be known. No family should have to go through the additional trauma of trying to assume what a person would have wanted.
It is very difficult to say what is right and what is wrong. I not only work in the NICU at my hospital but I am a member of the Ethics Committee. The spirituality as well as the intellectual understanding of the family has to be taken into account. Some religions are stricter than others as to what is considered dead. Some people are more educated than others too. It is our job in the medical field to educate to the families’ level of understanding.
Many people don’t understand the differences between a coma, persistent vegetative state and brain death, said Arthur Caplan, head of the division of bioethics at NYU Langone Medical Center in New York City. By moving the lungs up and down, a ventilator can “give the appearance of life,” Caplan said. In the case of Jahi, her new doctors are “trying to ventilate and otherwise treat a corpse,” Caplan said. “She is going to start to decompose.”
According to the Uniform Determination of Death Act, adopted by most states, death is defined as “irreversible cessation of all functions of the entire brain, including the brain stem.” It is thought that there is no ethical dilemma in the care of someone who is brain-dead, as the patient would now be referred to as a corpse. Yet the family may think otherwise.
Difficulty develops if it is not made clear to the family that brain dead is equivalent to death. According to a study in 1999 at Thomas Jefferson University Hospital, nearly one-half of physicians and nurses interviewed do not properly explain to families that brain dead patients are, in reality, dead. Unless family members are provided with a complete picture that all cognitive and body functions have irreversibly stopped, they may have false hopes for a recovery. The use of the term “life support” confuses some even more. This is the time when organ donation, if appropriate can be brought up. It may bring some level of peace, if the family is educated properly that their loved one is no longer alive.
Determining brain death
There are several steps that are taken in order to determine brain death. Rules are different from state to state as well as from hospital to hospital. However the basics remain the same. That is that the brain has irreversible damage that will not allow the patient to have the ability to survive.
The patient must not have any voluntary intentional movement. Some spinal reflexes will remain even after brain death however they are not voluntary.
The patient must have no brainstem reflexes. These reflexes are as follows:
- The pupillary reflex – That is when a light is shown into the patient's eyes. In a brain dead patient, the pupils will not respond.
- The corneal reflex – That is when a cotton swab is touched to the patient’s eye to see if they blink. A brain dead patient will not blink.
- The "dolls eyes" reflex – That is when he patient's head is moved from side to side to see if the eyes remain fixated on person doing it. A brain dead patient's eyes will not remain fixated.
- The gag reflex – That is when the back of the throat is touched with a cotton swab. A brain dead patient will gag or cough. .
- Cold caloric testing - In this test, ice water is placed into the patient's ear. In a conscious patient, this causes nausea as it makes the patient feel he is spinning. Because of this feeling the eyes will move in the opposite direction to attempt to keep the vision steady. A brain dead patient's eyes will not move at all.
The apnea test is a very simple procedure. To test this, the ventilator is simply turned off and the patient is observed to see if any attempts to breathe are made.
Sometimes additional tests are performed such as repetitive EEGs that show no activity and brain scans. At our hospital we use Nuclear Brain Flow studies. This study involves injecting a radioactive solution into the blood stream that shows on a picture screen. By allowing the family the ability to witness how blood is flowing around the neck and upper body however stops when it gets past the upper neck is a powerful tool for visualizing that the brain is no longer receiving any blood flow and is now considered dead.
Most hospitals require two different physical exams by two different qualified physicians to confirm the diagnosis. It is usually the attending and a neurologist. There has to be an agreement and the time of death is documented by the second doctor.
Until recently, death was defined as of loss of heart and lung functions. However, with modern technology these functions can be maintained (for awhile anyhow) even when the brain is dead. This is despite the fact that the patient's recovery is hopeless resulting in undue financial and emotional stress to family members.
Take home message:
It is not inexpensive to stay in an intensive care unit bed. The cost is often well over $8,000 a day. Once a person has been declared brain dead the insurance companies stop paying the bill, placing the cost on the hospital and ultimately the family. Keeping a person’s body attached to the ventilator and life sustaining medication is fine for a few hours or day or two until out of state family arrive. However, to do this for a longer period of time only prolongs the inevitable and traumatizes the family and adds stress to already overstressed hospitals. As a society we believe in miracles. Indeed they do happen. However we also see death as an option and not as inevitable. We are all born dying from the moment we take our first breath. Mixing faith and technology only blurs the line between life and death. It leaves the families of the brain dead in turmoil and our society providing futile care when there are so many other health care needs going unmet. My motto has always been “Just because we can, doesn’t mean we should”.
I welcome your comments.
Eelco F.M. Wijdicks, MD, PhD, Panayiotis N. Varelas, MD, PhD, Gary S. Gronseth, MD David M. Greer, MD, Evidence-based guideline update: Determining brain death in adults, Report of the Quality Standards Subcommittee of the American Academy of Neurology Neurology 74, June 8, 2010.
Jerome B. Posner and Fred Plum.Plum and Posner's Diagnosis of Stupor and Coma. New York: Oxford University Press, 2007.
Ad Hoc Committee of the Harvard Medical School."The Harvard Committee Criteria for Determination of Death."In Opposing Viewpoint Sources, Death/Dying, Vol. 1. St. Paul, MN: Greenhaven Press, 1984.
Sullivan, Jacqueline, Debbie L. Seem, and Frank Chabalewski. "Determining Brain Death." Critical Care Nurse 19, no. 2 (1999):37–46.