By Mark Dunning
It is not easy for a professional to deliver bad news to a family. Doctors and genetic counselors are people, too. They have parents. They have children. They understand the impact of a diagnosis like hearing loss or Usher syndrome. They don’t want to hurt or upset the family. It is human nature to try to soften the blow.
blog post from Elise about Hunter’s diagnosis, I was reminded of our own experience with Bella’s diagnosis.
When the newborn hearing screen indicated that Bella might have hearing loss, the doctor said “Don’t worry about it. These tests are not very accurate. We get false positives all the time. It’s probably just fluid.”
When we first discussed the genetic test for Usher syndrome with our doctor, she said “Don’t worry about it. It’s very rare and the chances of Bella having it are infinitesimal.”
My reaction to the advice of “Don’t worry about it” was different in both cases. With the hearing loss, I didn’t worry about. In fact, I so discounted it that I didn’t even go to the hospital with my wife and daughter for the more extensive tests. My wife received the news by herself from the doctor then had to call me at work and tell me over the phone. So not worrying about it didn’t soften the blow at all in the end. It probably made it worse.
I reacted completely differently to the Usher syndrome testing. After hearing the description of a typical type I Usher patient, I knew Bella had it. I immediately fell in to a deep depression that lasted for weeks. I didn’t begin to pull out of it until we got the definitive diagnosis. Not knowing, for me, was worse than the diagnosis. So advising me not to worry about it was a waste of time. I completely ignored the advice and dove right in to full on panic.
You get the point by now. Advising families not to “worry about” the testing process is a tactical error on the part of health care professionals. At best the advice will be ignored and at worst it will exacerbate the very response it’s trying to quell. Here’s a recommendation for professionals faced with this type of scenario:
Acknowledge the fear
It’s OK to ask the family how they feel about the possibility that their child has hearing loss or has Usher syndrome. This needs to be handled delicately, of course, with a proper amount of concern and gentleness. Families need to know that concern about the diagnosis is not only normal, it’s preferred. A concerned family is a family that cares and understands the gravity of the situation.
After acknowledging that fear is a normal part of awaiting a potentially life-changing test result, families need to hear that no matter how the test turns out, they are going to be OK. Neither hearing loss nor Usher syndrome is a death sentence. People with Usher go to college, they get married, they have kids, they have successful careers, they have athletic success, and they travel the world. People with Usher laugh, love, and live happy lives. This is different than “Don’t worry about it” because it validates the inevitable range of emotions that will follow from such a diagnosis. But advising families to consider other possibilities beyond the negative is a necessary next step.
Be clear on when a family can expect the test results
The number one frustration I hear from families concerns the length of time it takes to get back genetic test results. Usually their e-mails to me start with “We were told we’d get the results in a few weeks. It’s been two months and we haven’t heard anything.” That’s bad. If the goal is to reduce the anxiety a family feels, an accurate estimate of the timeline is essential. And if things change, families need to be informed of the delay BEFORE the results were originally expected, not after.
Make sure families understand how the test works
This goes hand in hand with when to expect the test results. Families often get worked up about the blood test done for the genetic analysis. Like most other routine blood tests, they expect a quick turnaround, like they’ll read a magazine in the waiting room then get the results. Getting worked up waiting for the genetic test results is counterproductive, because these results will take weeks. Families should know that.
Conversely, the ABR test done to confirm hearing loss IS immediate and definitive. You learn the results right there in that appointment. Families need to know that so they can plan appropriately. In my case, if I had been more aware of how the ABR works, I probably would have joined my wife instead of going to work.
Schedule an appointment to go through the results in person
Taking all of the above concerns into account, this is definitely news best not delivered over the phone. Families will be scared or they will be numb. They will have tons of questions or they will have none. They’ll be accepting of the diagnosis or they’ll question the results. Clinicians need to be able to read expressions and reactions and provide more information or support accordingly. This is difficult, if not impossible, to do over the phone.
It’s also best to schedule the appointment before the results are in. If a family receives a call saying “we have the results, we’d like you to come in” they are going to panic. It’s bad, they’ll think, otherwise they would have just told us over the phone. Either that or they’ll pester the caller for the results. Scheduling the meeting in advance avoids these issues.
Putting it all together
So here’s what a professional who’s paid attention to these pointers might say (in brief):
“I understand you may be anxious. That’s a normal reaction. Most families feel that way. We’re going to send you down to the lab to draw some blood. You’re not going to get the test results for approximately six weeks. So let’s schedule an appointment right now to go over the results six weeks from now. If the timeline changes, I’ll call you in advance and let you know. And remember, no matter the test results your son/daughter/mother/sister/brother/uncle can live a full and happy life.