Managing Hope

June 1, 2011
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Michael Agus

“House officer to bedspace six — stat!”

During my first month as a doctor, on my first rotation in residency, I was roused from sleep in the call room via an overhead announcement and summoned urgently to the bedside of a sick child. The patient was a six-month-old girl who had suffered a severe asphyxial brain injury. She had been found lifeless by a babysitter who, along with an emergency response team, brought life back to the baby girl.

Although the etiology of Sudden Infant Death Syndrome (SIDS) is still not fully understood, progress has been made in identifying and mitigating risk factors in order to prevent it. No real progress has been made, unfortunately, in helping the brain to regain function after sustaining such a severe insult.

We had a meeting with the parents to explain that the child was largely no longer “there.” On exam, we were not able to elicit any signs of normal brain function. She had occasional body movements that we suspected were seizures, so we attached leads to her scalp (an EEG) to measure the electrical activity in her brain. Several other organ systems were beginning to shut down as a result of the prolonged lack of oxygen. A CT scan of her brain showed diffuse brain injury and severe swelling. We explained that it was only a matter of time until all brain function ceased; an irreversible process had begun. After we completed our delivery of this horrendous news, the young father, actively listening throughout the meeting, explained that he maintained his belief in God and, through his tears, said that he still had hope. We all validated this hope, not as an expectation of improvement, but as an expression of his wish, his prayer. He heard what we had been saying. He knew his daughter was lost to the world.

When I arrived at the bedside later that night, the baby looked like she was coughing against the ventilator to which she was attached to support her basic vital functions. I switched on the EEG. Although the inked needles dashed up and down over the page, initially making me hopeful, I quickly recognized that this was seizure activity, the most abnormal brain activity one can have.

The father and grandfather arrived at the bedside only seconds after I had. I could see in their faces that they were also initially fooled into thinking that the little girl’s muscle movements might represent improved brain activity. As they continued to process the scene, it dawned on them that there was nothing positive happening. When I explained that she was having seizures, the father looked up at me with tear-filled eyes and said, “I still have hope.”

I returned his gaze and affirmed, “It’s important to have hope.”

The grandfather’s eyes darted to me and he excitedly asked, “It’s okay to have hope?”

Since that moment in the first days of what became my career in pediatric critical care medicine, I have struggled to get parents and, occasionally, patients to have just the right amount of hope. At some level, this represents the arrogant side of our profession. But ultimately, it comes down to distinguishing between hope and expectation. High hopes are productive in healing and in allowing loving, supporting interactions with the sick child. For when a child looks in his or her parents’ eyes and sees hopelessness, there is nothing left to fight for. Hope is an essential ingredient for quality of life.

Physicians have an obligation to ensure that parents understand their child’s illness and its prognosis to the best of their ability and medical knowledge. If a parent hopes for and expects a full recovery when one is essentially impossible, then the physician has failed in an essential duty. The physician must ensure that the family understands, through whatever means possible, the unlikelihood of survival, or cure, or success of the procedure. Sometimes this requires bringing in other family members, clergy, or friends, or presenting the information in a clearer fashion than had been done to date. Other times, it may require daily meetings and conversations, using clear language that includes the word “death.”

But on occasion, expectations are more clearly understood by the family than by the health-care team. A mother whose baby was suffering from an inborn lethal illness that had reached the critical state recently chastised me, now sixteen years into my career, to please stop being so sad and morbid when I came in to examine her baby each day in the ICU. She understood her child was not long for this world, but she wanted every day that remained to be one filled with positive energy and hope. The boy died ten days later, warm in his mother’s arms, with the rest of the family in attendance — with dignity and crushing grief, but hope.

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Michael Agus is a physician specializing in pediatric critical care medicine and pediatric endocrinology at Children’s Hospital Boston. An assistant professor of pediatrics at Harvard Medical School, he is president of the Kehillah Schechter Academy of Norwood, Mass. (formerly, the South Area Solomon Schechter Day School), and medical director of the Hearts and Noses Hospital Clown Troupe in Boston.

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