“No matter how much training you get, or how much practice you have, nothing prepares you to give someone a life-changing diagnosis for their child.”
–Leslie Wells, MD
You have known the Jones family for years and cared for their first two children who are now healthy teenagers. The family now has a new baby boy who was born with clinical features consistent with a genetic disorder. You just confirmed that disorder by chromosomal karyotype and the Jones parents are on their way to your office.
No one likes to tell parents that their child has a disability or special health care needs. It’s hard on you, and it’s hard to do well. The parent to whom you are delivering the news will forever remember the moment they heard this news. No matter how emotionally challenging the process might be, delivering difficult news is one of the most important responsibilities of being a physician.
We know you have a personal style and that bedside manners for doctors vary widely. After all, doctor-patient communication and doctor-patient interactions are very individualized. No one is suggesting that you completely change your approach. However, the way that you give difficult information to a parent often makes a big difference in a child’s long-term outcomes.
While writing this webpage, we’ve reviewed the latest literature on delivering difficult news to parents, spoken to several physicians, and talked to dozens of parents about what they’ve experienced when learning about their children’s diagnoses. We’ve identified a few common themes––things that parents wanted or found helpful in the diagnosis experience.
Based on what we have learned, and in hopes of easing stress for parents of children with disabilities or special health care needs, we’ve put together these suggestions to help you the next time that you have to deliver life-changing news.
Several common themes emerged when parents reflected on conversations that went very well. Here are some of the things parents want and hope for in their patient-doctor communication:
In addition, you can help parents connect to other families in similar situations. The American Pediatric Society has endorsed parent connections as an extremely important form of support. You can send parents to Texas Parent to Parent to find help, or ask them to come to our website to connect with other parents.
When we asked parents what they wanted or needed from a doctor when getting a diagnosis for their child, here are some of the things we heard:
There has been a lot of research in recent years about best practices on delivering a diagnosis to parents – general research on the topic as well as for specific disabilities or special health care needs. We’ve linked to some of them later on this page. Of course, best practices may differ based on the age of the child. Delivering a prenatal or infant diagnosis is going to be different than delivering a diagnosis for an older child.
Across all of the best practices we’ve researched, we have identified several common threads.
First, before the appointment, one tip we’ve heard from other doctors is to have a member of your office staff who does not know test results or the diagnosis call to make an appointment so that no one accidentally gives a diagnosis on the phone. When the parents come to see you, find a private place where you can talk in person. Try to be on the same physical level as the parents (for example, sitting if they’re sitting), and don’t have a desk between you. Make sure that both parents (if there are 2) have the chance to be there, but respect their decisions about whether or not to have other family members in the room.
Speak in an accessible way, using person-first and culturally sensitive language, and especially avoiding the use of medical jargon. Find out what the parents already know about the diagnosis and treatments so that you can speak to their level of expertise. Explain the risks associated with the child’s condition in various ways to make sure that parents understand. Then, make sure you have scheduled enough time to answer a family’s questions. That said, get to the point quickly so that parents have time to absorb what you are saying and talk things through with you.
Avoid giving only worst-case scenarios. While parents do need to understand the range of what to expect for their child, various treatments and therapies affect a child’s outcome. Parents are more likely to seek out these options if they are pointed in a positive direction from the start. You can make a choice to leave prognostications to the therapists who will be working directly with a child so that any predictions are clearly tied to that child’s development.
Before the appointment ends, make a clear plan for next steps. You might offer to talk with the parents again by phone or you might ask them to schedule a follow-up office visit to talk through treatment options. You might even draft a clear recommended treatment plan that day or make a referral to another specialist. Once you make a plan, you can offer a written, video, or oral summary statement of the diagnosis, discussion, and next steps or referrals. Ask if they need help explaining diagnoses or treatment plans to their child.
In all cases, be very thoughtful in how you deliver this sensitive information, and be aware of parents’ emotions. Have phone numbers or websites where they can find more information and connect with other parents or support groups. You can go to our [Find Services, Groups, and Events](link to: Find Services, Groups, and Events] page for some suggestions.