I deal with death on a regular basis. All doctors do, but in my role of Ethics Chairman at my hospital I often have end of life discussions with dying patients and their families. All of these conversations are difficult. I am only called to assist when there is conflict between physicians and families that cannot be resolved or when families cannot agree on how to proceed.
The most common consultation requests are in cases where doctors have concluded that there is nothing more to be done and recovery is impossible, yet families believe hope remains. When they believe additional treatments and life-prolonging interventions will only prolong death and increase suffering doctors recommend stepping back and allowing natural death to occur. Families often believe that letting go is the same as actively killing someone and thus cannot accept the doctor’s recommendations. When these impasses cannot be resolved, they call me.
I have been involved in dozens of these conversations. While each situation is unique they all share common characteristics. Foremost among them are differing views on death and what it means to be alive.
Doctors, in particular critical care physicians, see death all of the time. They see the signs of its coming and recognize its inevitable progression. They know the signs of recovery and survival, and in fact search for these signs relentlessly. They long to cure and heal but learned early on in practice that there are some battles that cannot be won. When recovery and restoration are no longer possible they turn their attention to the good that remains, the ability to provide comfort and dignity as a fellow human being passes from this life.
The families of patients sometimes see things differently. They see someone they love lying in a bed, someone they cannot bear to lose. They know death happens but they cannot believe or accept that it is happening to their loved one at this time. They have heard and read of miraculous recoveries and have profound hope in the power of love and the will to live. They “know” that at any moment things could change, that their family member could return. Even if full recovery isn’t possible, the chance of one more smile, one more word, or one more touch seems worth fighting for.
This hope for a miracle can lead them to see hopeful signs where no hope exists. Reflexive responses such as grimaces, grunts, and the movement of a headare evidence that “she is still in there!” or that “he can hear us!” The grasp reflex, present after only four months of development in the uterus, is interpreted as a reassuring squeeze, instead of a primitive reflex that means nothing at all. These false signs of hope become the evidence that doctors are giving up too early, proof that the fight should continue.
Love, compassion and mercy compel physicians to speak truth in these circumstances. When this truth is not accepted people like me are often the final messenger. My suit and tie and title of Ethics Chairman provide extra gravitas to words others have spoken and communicate a level of seriousness and concern families need to hear. Referencing our shared promise to “Do no harm,” I remind families that prolonging suffering and futile care are things we cannot and will not do. There are times when there is a moral and ethical imperative for physicians to compassionately say, “No.”
These conversations are always difficult but they are times when the burden is more bearable. When the patient is a nonagenarian victim of a massive stroke, bed bound and ventilator dependent, there is a higher degree of clarity. We know that death is only a few years away for the healthiest of 95 year olds, which eases the fear of error. Conversations with multiple patients near the end of their lives give us confidence that it would be cruel to artificially force someone to a prolonged death tube-fed and non-communicative in a nursing home.
The younger the patient is the more difficult these conversations become. There is a dramatic difference between saying goodbye to an elderly grandparent and saying goodbye to one’s little boy. The natural fear and intense emotions that come with a dying child can overwhelm the coping mechanisms of any parent. Desperate desire and gargantuan grief, when combined with the false signs of hope often displayed by a vegetative patient, make it impossible for some loving parents to let go.
This appears to have been the case with the parents of Alfie Evans, the 23-month old infant who died today in a hospital in England. Alfie had a degenerative neurological condition that resulted in severe development delay (he never progressed beyond the level of a 2-month old child). His condition led to severe seizures when he was 6 months old. MRI scans and EEG tests demonstrated significant brain damage was already present at the time of his first seizures. He was placed on a ventilator and a feeding tube was inserted. In spite of aggressive medical treatment the neurologic condition and resultant epilepsy progressed and caused continued damage to his brain tissue.
Over the course of the last 17 months extensive medical testing and analysis was done on little Alfie. Although it was evident to physicians early that recovery was not possible they continued to explore every available option. Ultimately, when later MRI scans showed that brain tissue was decreasing and being replaced with fluids, the medical team reached the appropriate conclusion that continued care was futile. While they could not know with certainty whether or not Alfie could experience pain it seemed clear that if he couldn’t experience pain it was because he had no meaningful brain function remaining. Worse, if he could experience pain, he would experience it with no hope of recovery. Neither option supported continued care. It was time to let him go.
All of this was presented to the family and the doctors said it was time to withdraw life support. The court documents articulately describe his parent’s response-
“The Fathers core dilemma, from which he struggles to escape, is that whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope.”
Alfie’s family could not let go. A careful review of the case reveals the innumerable obstacles they faced as they struggled to process the tragedy and how they should respond. Alfie was their only child, and they were just 19 and 20 years old. They received an overwhelming amount of outside input from uninvolved parties, some of whom seemed more interested in personal agendas than they did in their suffering. The parents were trapped in the middle of a hurricane of opinions and emotions with no way of escape. It was ultimately the courts who determined the path that would be followed. The decision was made for them. Alfie was removed from life support and died this morning.
Much has been written about Alfie’s case, most of it focused on the issue of parental rights regarding decisions to continue care. I will leave those arguments to others. For me, Alfie and his parents demonstrate a reality that is a part of all medical care. Patients and families are often forced to make decisions they are not equipped to make.
When these circumstances arise it is up to physicians to love, serve and support the patients under their care, to do good whenever possible. When that is no longer possible, to do no harm.
If you are interested in the details of the case, I recommend you read the judge's decision. You can find it here.