Breaking Bad News to Parents
Telling parents that their perfect new baby has a hearing loss is one of the most difficult things I ever have to do as an audiologist. After more years of doing this than I want to admit to, it still makes me sad to break bad news.
Understanding our own emotions about this helps us deal with the emotions of parents. Having worked with kids for a long time, I am truly optimistic about what is possible for deaf kids right now. I really believe that, with the right technology and the right therapy, kids with hearing loss can be successful and learn to listen and talk, go to school with their sibs and peers, and be what they want to be.
Parents of newly identified kids are not so lucky. They do not have the experience to know that they should be hopeful. We should expect parents to be stunned and sad when they discover that their perfect newborn infant is not perfect.
If they know anything about hearing loss, it is likely they learned it from some old relative who has a hearing aid that whistles and who is always asking “what?” They are overwhelmed, and that is reasonable.
Jane Madell, PhD, has a consulting practice in pediatric audiology. She is an audiologist, speechlanguage pathologist, and LSLS auditory verbal therapist, with degrees from Emerson College (BA) and the University of Wisconsin (MA, PhD). Her 40+ years of experience range from Deaf Nursery programs to positions at the League for the Hard of Hearing (director), Long Island College Hospital, Downstate Medical Center, Beth Israel Medical Center, and New York Eye and Ear Infirmary as director of the Hearing and Learning Center and Cochlear Implant Center. She has taught at the University of Tennessee and Downstate Medical School, published four books, and written numerous book chapters and journal articles, and is a well-known international lecturer. Jane’s clinical and research interests cover the gamut of evaluation and treatment for infants and children with hearing loss and auditory processing disorders. Her non-audiology interests include yoga, quilting, folk music, and three adorable granddaughters.
Slow Things Down
So what can we do to make things easier? This, for me, is the hard part. My instinct is to take earmold impressions 32 seconds after identifying the hearing loss and fit hearing aids 2 minutes later. I might get the earmold impressions done, but none of this is of any value until the parents are ready to move on.
How we tell parents the bad news makes a lot of difference in how they accept it. While it’s not my personality to do so, I know that what we need to do is slow down. Knowing that our next patient is in the waiting room does not help. We don’t have time, but we need to make time.
When we give bad news to families, they need to feel that we are there to listen to them. A friend of mine got the news that she had cancer when her physician came into the recovery room and stood at the foot of the bed and said, “You have cancer, come to my office next week, and we will talk about it.” Needless to say, this was not a good way to transmit bad news.
We need to be sure we are not transmitting news that way.
Be There for the Family
When we identify a hearing loss in a child, we need to sit down in a room with the door closed, with beeper off, so the family feels that we are there for them. We tell them that the child has a hearing loss—and stop. The parents need a chance to digest the information, and to think about it.
Some parents want to dig a hole and give up at that moment. Others want an action plan. We cannot know who parents are until we give them a little time.
I am not willing to wait forever, because I know time is of the essence. But I also know that what I want has only so much value. What really matters is what the parents want, so we need to give them a little time to adjust.
I say, “Tell me what you want to know” and wait to hear what they say. I usually ask what they know about hearing loss and then I can tell them that hearing loss today is not the hearing loss that they know. Things are better now, technology is better now, etc. I tell them what to expect, and I help them get going. If they are not ready to move on, I schedule another appointment in a week so we can talk again.
Most families are able to move on by then. Some will take more time. Up to a point, I give it to them.
My mentor, David Luterman, would say we need to wait until they are ready. He is the parent person. I am the kid person, so I need to get the kid moving, and I will push before David does.
Basically, if we are sympathetic and if we give parents support, they will come around. In more than 40 years of practice, I think I can count on one hand the families that could not move ahead. A few hated the news and chose to go somewhere else for services. That is okay. As long as the kid gets help.
What do you think? Chime in on Dr Madell’s blogpage at: hearinghealthmatters.org/hearingandkids