“We are to show compassion and even love in the midst of the great and nearly unbearable pain that we must at times unleash upon our patients.” – Jay Wellons (from All that Moves Us)
As it is said, children are not little adults. In pediatric neurosurgery, our patients are often without a voice, without the ability to understand their affliction, without the capacity to make their own decisions and with a relative inability to advocate for themselves. Though, while children may lack legal capacity, many certainly have the vocabulary and perspective to be involved in their own care or make some decisions for themselves. We have the unique opportunity to listen to our patients, to watch their body language and their reactions to our words, and to allow them the attention and eye contact that we give to their caregivers.
Children who can verbalize should be encouraged to ask any questions, and their diagnosis and treatment should be explained in developmentally-appropriate ways that absolve them of blame for their diagnosis and demonstrate support from others. For them to allow us to help them, to connect with us, they need to know that we truly care.
Taking care of a child requires special handling, not just of the patient, but also of the parents and caretakers. We often inflict not only physical pain related to neurosurgical procedures but also emotional pain and anxiety due to a new diagnosis. Our job is to lessen that pain with compassion and honesty. Often times, when faced with difficulties, people need space and grace, to deal with unexpected news. Physicians often times are the front line responders to the emotional upheaval experienced by parents when their child is sick.
Parents and caretakers must put a huge amount of trust and confidence in us, often after only meeting us for a short while. They are placing their child’s life in our hands. What greater trust is there than that? For us to be worthy of that trust, we must be honest about our knowledge (and lack of) and what we can and cannot offer; this conversation demands listening to each patient and family. We cannot just treat the diagnosis; we need to treat the patient and their family.
How does one communicate with the parent whose child has sustained a life-threatening brain injury and will likely remain comatose forever? How does one explain the cognitive impairment that may result from such an injury? How do we convey this message while remaining emotionally intact? The only answer is with honesty, fortitude, tact and love – love for our patients and our craft. We breathe and work through our own reactions as providers. We then sit down, relay the facts, listen, offer empathy and validate all the emotions in the room. There is an unparalleled bond that forms when parents give us their trust as physicians and surgeons to care for their child. We carry that with us. The ability to be compassionate with the smallest of concerns or the life-threatening situations and to connect with patients and parents in a way that is human is at the core of what pediatric neurosurgeons do every day.
