Delivering a difficult diagnosis: a parent’s perspective
By Laura Spiegel
On August 12, 2013, my five-week-old daughter was diagnosed with cystic fibrosis. I acutely recall the moment I heard this surprising news and the feeling of “Everything has changed.” I’d worked in healthcare in the field of chronic disease for almost a decade. And yet, it had never occurred to me that this would one day be me. Is that bad? It sounds so callous and arrogant looking back, but I never really thought about it. Other people’s kids might be sick. But not mine. Not my baby.
I remember our messenger’s phone call like it was yesterday. His delivery was poor and his suggestions for next steps ridiculous. Turns out Google is not the best place to direct parents for information on cystic fibrosis (or any other complex medical condition).
Fortunately, a second messenger came on his heels. This physician took my hands and said the words that have shaped my outlook for the past seven years. “Your daughter can live a long and full life. It’s my job as her physician and yours as her parents to help make that happen.”
In that moment, she reached through my wall of tears and enabled me to hear – to really hear – the rest of her message.
She acknowledged the uncertainties associated with cystic fibrosis and shared the scientific advancements that had already occurred and that were planned for the foreseeable future. “There is never a good time to be diagnosed with a chronic disease. But if there ever was, that time is now.” She gave us the history. She gave us the science. And she gave us hope. She also reminded us that we are not alone. We are in this together.
As the Founder of Paint Her in Color, a web site that offers emotional support to parents of children with special health care needs, I’ve encountered countless families just like mine. Nearly all remember the moment their child was diagnosed. They remember where they were. They remember the words that were shared. And they remember the moment their worlds separated into “before” and “after.”
One of my biggest passions is helping care teams deliver pediatric diagnoses in a supportive, compassionate manner. Here are my top 10 tips for delivering a difficult diagnosis.
1. Be prepared. It sounds like a no-brainer, but take the time to prepare for your conversation with us. How will you explain the diagnosis? What tone and body language will you use? What questions do you anticipate we will ask? Where will you encourage us to go for additional information? How will you realistically instill hope? Taking time to consider these questions can help you establish yourself as a credible source of information and begin to build a family’s trust. It can also help you feel more comfortable and confident in your delivery of the news.
2. Minimise information overload. Families need time to process life-changing news, especially if it is unexpected. When preparing for your first interaction with parents, consider what information you absolutely must convey and what can wait for another time.
3. Acknowledge our emotions. If we parents are overwhelmed emotionally, we may struggle to digest what you are telling us. Resist the urge to fall prey to the checklist. Look us in the eyes and ask how we are feeling. This guidance also holds for our interactions over time. As parents, it is difficult to clinically manage our child’s condition if we struggle with psychosocial barriers, such as depression, anxiety, or poor social support. Help us recognise these barriers and provide resources to help us overcome them.
4. Watch for nonverbal cues. I came armed with a prioritised list of questions for my first appointment with my daughter’s care team. I brought a highlighted copy of the Evidence-Based Guidelines for Caring for Infants and Preschoolers with Cystic Fibrosis. At face value, I was an informed, activated caregiver who was ready to take my daughter’s condition by the horns. But inside, I was a wreck. Our physician recognised my blank expression and my constant struggle to hold back tears within minutes of our meeting. By taking the time to acknowledge how I was feeling, she helped establish trust and moved me closer to the point of being able to hear what she was saying.
5. Sit with us. I distinctly recall how my daughter’s physician sat next to me in our first interaction.She didn’t stand over me. She didn’t sit behind a desk or even across from me. She sat by my side and spoke to me as if we were equals. And in a sense, we were. We were both equal partners in my daughter’s care. At one point, the physician took my hands and spoke to me “mother to mother.” While physical touch is not appropriate for everyone, simply revisiting how you sit can help form a sense of partnership with parents.
6. Anticipate different responses. If more than one parent or caregiver is present, we might have different responses to the diagnosis. One might respond in a more analytical manner; the other might be more emotionally expressive or even completely silent.Take the time to acknowledge and speak with both of us, even if one has been more vocal than the other. Remind us that there is no one “right way” to respond to difficult news, and that we are both important players in our child’s care.
7. Address the elephant in the room. In many diagnosis conversations, there is an elephant in the room with you. Parents might be wondering “Did I cause this to happen?” “Will my child be able to go to school?” “Have a job?” “Get married?” “Have a family?” To the extent that you can, proactively address these elephants in as authentic, yet hopeful a manner as possible. Even if we aren’t asking you these questions, we are likely thinking them.
8. Offer words of hope where appropriate. Many of us parents will grieve the type of childhood or overall life we had envisioned for our child. Emphasise where we can find hope. Is science advancing in this area? Are future therapies coming down the pipeline? It is important to be authentic and to avoid offering false hope. But to the extent that is realistic, help us set high expectations about what our child is capable of vs. focusing on what a child will never be able to do.
9. Point us to trusted sources. When I was told to Google my daughter’s condition, I quickly learned that 1) Decades ago, people with cystic fibrosis didn’t make it to elementary school; 2) Some people with CF like to post videos that document their bronchoscopies; and 3) Nurses used to kiss babies and declare a child who tasted of salt to be “not long for this earth”. Contrast that with the home page for the Cystic Fibrosis Foundation, which states that “People with CF are living longer, healthier lives” and “Here’s what you can do to manage your daily care.” Most medical, developmental, and behavioral health care conditions have national foundations that provide credible information and support. These can be excellent follow-up resources for parents.
10. Let us know we don’t have to go it alone. Receiving a difficult diagnosis can be very isolating. Remind us that you (or a specialist) will be partnering with us to help us manage our child’s condition. Point us in the direction of local support groups or peer mentors who can relate to our day-to-day routines and provide realistic sources of hope. Remember that 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 don’t have to walk this road alone, we are one step closer to being able to successfully manage our child’s care.
While a diagnosis discussion may be just 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 who have real emotions and are trying our best. In doing so, you can build trust and begin to form a partnership for optimising clinical and emotional outcomes in families.
For 12 years, Laura Spiegel partnered with physicians and psychologists to help people with chronic illness lead happy and healthy lives. Her professional and personal worlds collided in 2013 when her own daughter was diagnosed with cystic fibrosis. Laura founded Paint Her in Color in the US after realising that emotional support for parents like her was hard to find. Visit https://www.paintherincolor.com/ to find out more and read more of Laura’s writing.
