On August 12, 2013, my five-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.
At 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 to deliver pediatric diagnoses with intention. Words and actions matter big time.
Here are 10 tips for delivering a difficult pediatric diagnosis 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 tell 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 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 conversation and acknowledging how I was feeling, she validated my emotions as a mother and began to build my trust.
5. Sit with us. My daughter’s pulmonologist did not stand over me; she sat across from me as an equal. At one point, she took my hands and spoke to me, “mother to mother.” While physical touch is not appropriate for everyone, revisiting where you sit can help you form a sense of partnership with parents.
6. Anticipate different responses. If more than one parent or caregiver is present, we may not respond in harmony. One may be analytical or matter of fact; the other more emotionally expressive or silent. Be sure to speak with both of us. Remind us that there is no one “right way” to respond to difficult news and that we are both important members of our child’s team.
7. Address the elephant in the room. Parents might wonder, “Did I cause this to happen?” “Will my child go to school?” “Have a job?” “Have a family?” Proactively address these elephants in as authentic, yet hopeful a manner as possible. Even if we aren’t asking these questions, we are thinking them.
8. Offer words of hope where appropriate. Many parents will grieve the life we had envisioned for our child. Emphasize where we can find hope. Is science advancing? Are future therapies coming down the pipeline? To the extent that is realistic, help us set high expectations about our child’s capabilities vs. focusing on what our child won’t do.
9. Point us to trusted sources. The day my daughter was diagnosed, a well-meaning person told me to Google her condition. Did you know that nurses used to kiss babies and declare those tasting of salt not long for this earth? I wish I had gone to the Cystic Fibrosis Foundation’s website instead. Like the CFF, most conditions have national foundations that provide credible, up-to-date information and support. These can be excellent first resources for parents.
10. Remind us that we’re not alone. Receiving a difficult diagnosis can be isolating. Let us know that you are our partner. Point us in the direction of local support groups or peer mentors who can relate to our day-to-day routines and be realistic sources of hope. For many of us, the emotional part of managing a special health care need is often as challenging as the clinical. If we know we aren’t alone, we are one step closer to managing our child’s care.
While a diagnosis discussion may be one encounter of many in your day, it is a moment that we parents will remember forever. You don’t have to be perfect. Just be human and treat us as real people with real emotions who are trying our best. In doing so, you can build trust and begin to form a partnership for optimizing clinical and emotional outcomes for years to come.
Laura Spiegel is founder and president, Paint Her in Color.
