During hospitalizations, patients and families have lots of time to worry. Asking about the concerns and empathizing may be especially helpful.
“I’m sorry about this consult,” is an ominous statement in the hospital. Today the consult was for an infant with congenital heart disease in the pediatric intensive care unit (PICU). Her mother reported some movements that she was concerned about. The PICU team hadn’t seen them and wasn’t worried about what she’d described.
But mom was worried and that was a perfectly good reason for a consult. So I listened to her story. The patient had lived her whole little life in the PICU and the mother was almost always at her bedside. Day after day, she watched her beautiful baby fight for her life, a fight she was winning, but a few lingering issues were keeping her in the hospital indefinitely. Her mom had lots of time to sit and watch and worry.
She was worried that her daughter’s movements could be a rare type of seizures. But really, she insightfully admitted, she was worried that more bad things were going to happen to her daughter because her life had already been so difficult and unfair.
She wanted to know if we could do an electroencephalogram (EEG). Clinically she didn’t need an EEG, but the mother needed it. She needed to know it was normal. She visibly relaxed as soon as I agreed. A small but significant burden had been lifted.
The number of chronically critically ill patients has increased significantly over the past couple decades, especially in pediatrics. These are patients who spend big chunks of their lives in the hospital, often for weeks to months at a time. Families and loved ones spend hours, days, and weeks at their bedsides waiting and worrying. They often feel helpless, especially in a fast-paced, high-stakes environment like the ICU, and may not even share their worries with clinicians.
We must be aware of patients’ and families’ silent struggles. They may be reticent to volunteer these thoughts and feelings, but when given the opportunity, many are relieved to share their burdens. Here are 3 tips for how to help alleviate these worries:
1. Routinely ask patients and families what they’re hoping for, what they’re worried about, and if there’s anything that they were expecting that hasn’t happened.
2. If a symptom keeps coming up despite a negative evaluation and reassurance, explore their concern. Ask what they think the symptom may indicate.
3. When a patient or caregiver asks for a test that you don’t think they need, before saying no, ask why they want it and what they hope it will tell them.
The more a burden is shared, the lighter it feels for everyone.
This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.