a moment of inspiration By Laura Spiegel – Paint Her in Color
NO PRESSURE,
but We’ll Remember This Moment Forever: 10 Tips for Delivering
Difficult Pediatric Diagnoses On August 12, 2013, my 5-week-old daughter was diagnosed with cystic fibrosis. I distinctly recall the feeling of “Everything has changed.” I had worked in the field of chronic disease for almost a decade. And yet, it had never occurred to me that this would happen. Other people’s kids might be sick, but not mine. Not my baby. I remember our first day in the cystic fibrosis clinic like it was yesterday. I cried in the parking garage and struggled to nurse my daughter in the waiting room. And then it happened. That moment is forever etched in my mind. The pediatric pulmonologist took my hands, looked me in the eye, and said, “Your daughter is going to live a long and full life.” She went on to say that it was her job as a physician and my role as a parent to help enable this. In that moment, she recognized me as a mother and earned my trust. She forged the beginning of a partnership that would continue for years to come. And to this day, her words remain imprinted on my heart. I’ve spoken with hundreds of families like mine, and nearly all remember the exact moment their lives separated into “before” and “after.” That is why it is so important for physicians, nurses, and other care team members to deliver pediatric diagnoses with intention. Words and actions matter big time.
20 Special Needs Living • March 2021
Here are 10 ways care teams can present difficult pediatric diagnoses with authenticity and compassion: 1. Be prepared. It sounds like a no-brainer, but take time to prepare for our conversation. How will you explain the diagnosis? What tone and body language will you use? What questions do you anticipate we will ask? How will you realistically instill hope? By preparing in this way, you can establish yourself as a credible source of information and begin to build a family’s trust. 2. Minimize information overload. Families need time to process life-changing news. When preparing for your first interaction with parents, consider what information you must convey and what can wait for another time. When parents are overwhelmed emotionally, it can be hard for us to digest everything you are telling us. 3. Acknowledge our emotions. Resist falling prey to the checklist. Look us in the eyes and ask how we are feeling. This guidance also holds for our interactions over time. It is difficult for a parent to clinically manage a child’s condition if we struggle with psychosocial barriers, such as depression, anxiety, or poor social support. Help us recognize these barriers and provide resources to help us overcome them. 4. Watch for nonverbal cues. I brought a highlighted copy of the Evidence-Based Guidelines for Caring for Infants with Cystic Fibrosis to my first care team appointment. I had a prioritized list of questions. At face value, I was an informed, activated caregiver who was ready to take my daughter’s condition by the horns. Still, my daughter’s physician recognized my blank expression and shaking hands. By pausing the
