Trigger Warning-death of a child

As a pediatric neurologist I am called upon to witness more than my fair share of tragedy.  I have seen near drownings, child abuse, horrific brain infections that have left children devastated.  It is without a doubt the most heart wrenching, devastatingly difficult, soul killing part of my job.  It is the reason my field is rather unpopular with most medical school graduates and we are in short supply.  I am called upon from time to time to discuss with parents the nature of their child’s injury and questions of whether or not to continue prolonging life by artificial means.  Central to these conversations is the surprisingly complex question of what it is that makes life worth living.

Our technology has caused us to radically redefine our concept of death. The advent of the mechanical ventilator greatly prolonged our ability to preserve vital functions in comatose patients. We now have a arsenal of drugs that maintain the function of very sick hearts. In fact, we now have machines that can actually pump blood and oxygenate it on their own, called extra-corporeal membrane oxygenation. It is often used in babies with severe lung disease.

Death has historically, and continues legally, to be defined as the presence of the heartbeat. This technology presents a unique challenge to this idea. Technically, it we use a heart/lung machine during an open heart operation, we are operating on a dead patient. Thus the surgeon, legally if not in actuality, is raising the dead with the operation. Is this playing God, or was the patient really dead.  A legal rethinking of the matter was inevitable.

Mechanical life support comes at great expense, but can be a life saving marvel. But it is a marvel that can have diminishing returns.  Inevitably, the question came along, should we forever artificially support breathing for people who won’t wake up. In 1968, Harvard Medical School put out a paper defining the concept of irreversible coma. Theoretically, if we knew, really knew, when someone in a coma was never going to awake again, we could then know that artificial maintenance of vital signs is a futile effort and could ethically pull the plug.

In 1976 just such a case came along, Karen Ann Quinlan. She was injured in an automobile accident and sent into a coma for several years. Her parents asked the hospital to discontinue care, they refused and a landmark court battle ensued. This lead to a presidential commission study in 1981 which lead to the concept of brain death.

In brain death, all brain activity has ceased and is completely nonfunctional. The idea is that without any higher consciousness we don’t really have life any more. We are dead, period, end of story, heartbeat or no. This is a radical and new concept. It has developed just within my lifetime. It has met with great resistance and can be fraught with moral dangers.

After all, aren’t animals considered living even without consciousness, at least not human consciousness? What happens in the case of locked in syndrome for example. In this condition the patient is fully conscious but completely paralyzed, or “locked in” They feel pain, are aware of everything going on around them, but cannot communicate. While it is may be debatable whether it is merciful or cruel to pull the plug on this individual, they are undoubtedly not dead.

In my youth, Metallica put out a famous song, entitled One, describing a soldier with this condition during WWI for the movie Johnny Got His Gun.

Because of the difficulties with the concept of life, brain, mind, consciousness and humanity, great pains have been taken to separate brain death from coma. Legally, a brain dead person is someone who meets strict neurologic testing criteria to verify complete and total irreversible absence of brain function.  They are completely, legally dead. They have no right to continuing life support for their corpse. Short of a Lazarus event, they are never coming back. The spirit is assumed to have left the building, and yet the heart beats on.

They cannot have the most minuscule reflex of the most primitive part of the brain present or they will not meet the criteria. This is not a concept easily comprehended by the public. I have heard of families fighting tooth and nail, issuing death threats to medical staff, in some very emotional and perhaps poorly handled cases. I have seen brain dead patients kept on support for weeks awaiting legal proceedings. To family desperate for a recovery and sick with grief, life support is supporting life. It seems completely reasonable from their point of view. For someone who lacks particular trust in the institution of medicine this arrangement of brain death just feels wrong.  It doesn’t help that it is these patients that we harvest organs from for donation and transplantation. There is a genuine conflict of interest there and the situation becomes very delicate.  I strongly support organ transplantation, but that is because I believe in brain death as a bright line and moral protection.  Some simply cannot.

This construct caused some intense theological debates. The Orthodox Jewish and Islamic communities remain intensely divided on this issue even today. The 1981 commission report concluded that the criteria was acceptable to Catholic and Protestant conceptions of death, but others disagree. The Pope declared that this concept “does not fall within the concept of the church.” So they have been left to sort it out themselves, with most agreeing with the commission. However essays have been written with an opposing Catholic view.

Religiously, the question may come down to what point one thinks the spirit is tied to the body. Is the spirit only in the mind, or the entire body itself.  There are examples of women who have been declared brain dead and remained on life support up to 200 days to carry the pregnancy to term.  If the spirit and the mind are separate things, how do we sort this out?  In Mormonism, because of our doctrine of premortal existence, there is a necessary concept of ensoulment, that there is a point in development where the eternally existent spirit unites with its developing body.  Where than point exists is unclear.  It is a very difficult question the cause of serious debate.  A related question would be when the spirit leaves its degenerated body.  At some point that link is severed and the spirit goes free.  When is that?  Perhaps this is an occupational hazard, the tendency to view the body as a machine, but I can easily conceive a beating heart and functioning, if artificially powered lungs and living cells as an empty shell, or even as in the extreme cases of pregnant women sited above, simply an incubator providing for a new life.  I curious as to how others feel about this.

Even accepting perhaps that a spirit is still tied to a body with the mind ravaged, I have to believe there exists a point at which that life is really not a life worth living.  Is the soul trapped, locked in? I have felt quite comfortable in expressing to many families that sometimes we need to strongly consider that God may be calling their child home.  So much of our desparate medical search to beat nature over the head is rooted in selfishness.  Death has been and will always be part of life.  So many of the more religious parents I speak to, Mormons included, are convinced that a miracle will happen.  While I am open to the possibility that miracles can and do happen, they must of necessity be extremely rare to be considered a miracle.  What is left for the many believing, faithful, grieving parents for whom the miracle simply does not come?   Waiting on the miracle is so common that I have to believe it is the default, natural grief reaction when unimaginable tragedy strikes your child.  We just don’t want to let go.  For these families, it is horribly guilt inducing to turn off the ventilator and allowing them to go, even though this leads exactly to the natural fate all children with these same injuries in centuries past.  My personal rule of thumb is that God does not need a ventilator to work a miracle. However, much more commonly, parents would have us insert a tube in their stomach to feed them and place a hole in their throat in the trachea to hook up a mechanical ventilator to breathe for them indefinitely.  Keeping their body functioning becomes so complicated that the children often cannot have their care managed at home and have to be warehoused in specialized nursing homes.  I have seen many parents feel so much pain upon visiting these children that eventually they distance themselves and the child remains alone, oblivious in it’s little corner, with nurses and caregivers their only human contact.  In cases of child abuse, where the child enters state custody because the parents have done something unimaginable, I have yet to meet a judge who is comfortable allowing us to turn off a ventilator in a child very nearly but not completely brain dead.  So they are sustained indefinitely at incredible cost.  What is lost in all of this is consideration of what might be the kindest thing we can do for the child.  Can we manage to put ourselves into their place?

Some years back, I had a friend who had a child born with a devastating neurologic condition.  It has unstoppable seizures from birth.  While the brain appeared normal on pictures, electrically it was completely disorganized and it became clear that this child was not ever going to even achieve consciousness and have what I would consider meaningful function.  Because of what I do, I became involved in the situation peripherally.  This family made what I consider an incredibly courageous decision to unhook the machines and allow the infant to go home to that Being that gave it life.  Circumstances occurred that this took longer than expected.  My friend recorded their experience on a blog and had to take it down because they started receiving abuse from strangers about what horrible people they were.  Members of their ward became unsettled and the situation was communicated to their bishop.  He visited them and without discussing any details or reasoning behind their decision he told them in no uncertain terms they were doing the wrong thing.  The family was devastated at a time when they needed support from their ward family more than ever.  Why do we do this?  Why do we cling to life, life, life so hard that at times it seems to defy reason?  I ask you, which decision do you think requires more faith?  We teach that those who pass on are going to a better place.  Do we really believe that?  Can we have hope enough in this to let those go who  hopelessly trapped in a functionless shell of a body.

I don’t pretend to have all the answers and ultimately I don’t think it is my place to always judge the decisions others make.  Many parents turn their lives upside down in the care for these kids.  They do not all end up in institutions.  The care involved for these children is extensive and exhausting. I have seen it take over parent’s lives.  It is a powerful testament to how deep the parent-child bond really runs to see the lengths some of these parents go.  These parents are I think rightfully lauded for their sacrifices.  But that laud and honor come with a dark flip side.  Can we find it within us honor the courage to let go as well? At some point, there comes a day where this tireless devotion and demand for care is counterproductive and really is prolonging suffering.  From where I sit, I remain at a loss for a hard and fast definition of what that point is but I know it has to exist.  My job is ultimately to discuss these issues and support the decisions of others.  I would be lying if I said that was easy in situation that appears medically futile to me.  For so many of us in the healthcare profession this is the situation we hate most.  It builds resentment, judgement and cynicism in so many.  Ultimately, I would hope we could all learn to love first, to listen, gently explore and reason with, but above all, support all those who suffer in such a heartbreaking, impossible situations regardless of their decision.

Jeremy is a father of three and husband of one, all of whom he loves dearly. He currently serves as Sunday School president in his ward in Gilbert, Arizona. Born in Provo and raised in Sugar City, Idaho, Jeremy received his education at Utah State University and attended Medical School at St. Louis University receiving his MD. He then specialized in Pediatric Neurology.

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