As a psychologist, I have been in the difficult position of presenting diagnoses to parents on many occasions. It is often a difficult undertaking, however, as a mother who has sat on the other side of the table more than my fair share of times, I feel I have some unique qualifications for the job. I don’t necessarily think that there is a right or a wrong way to present a diagnosis to a family, but I do have some thoughts that may make the process somewhat easier for families who have to hear difficult news.
So, from a mom who has been on the giving and receiving ends of tough diagnoses, here are my thoughts on sharing a diagnosis with a parent.
1) Give the situation the time and respect it deserves.
When I have to present a new diagnosis to a family, I do so with the utmost respect. I make sure to schedule a long enough appointment to allow me to take the time that is needed to explain what I need to say, allow the family to ask questions, let them digest what I have said, and ask more questions. It can also be helpful to allow parents to schedule another appointment to come in and ask more questions if they need that time. I think about presenting a new diagnosis as if I am welcoming another family to Holland. Holland is a pretty nice place. Even if it’s not where you were planning to go. But finding out you arrived there instead of Italy can be a pretty major shocker.
You are about to deliver life altering information, take a moment to imagine how you would want such information delivered to you. My guess is, it would not be secondhand through a phone call from a nurse who bluntly tells you that your child has cerebral palsy, autism, or that the EEG is positive so they will call in a script for an antiepileptic, however, they can’t answer any of your questions, and seem perturbed at you for asking them (no offense nurses, most of you are awesome). It would also probably not be from a doctor, who is staring at their watch and tapping their foot while you sit in shock and start to cry. While our time has value in a monetary sense, it also has value in the sense of what it means to the families we work with to have our undivided attention for those moments.
2) Be specific when you are giving recommendations.
When I am presenting a difficult diagnosis, I try to be very specific when telling families the next steps to take. This includes not only recommendations for services, although certainly that is a big part of what I talk about, but I also provide recommendations on how the family can manage challenges in the home environment. This family has just heard some tough news, often times they want to go home and get to work, how can they help their child? Stretching regimens for tight muscles? Singing songs to encourage little ones language skills? Coping skills or relaxation strategies? What can they do, that very day, to start moving in the right direction? Give them some ideas to get started, along with excellent and specific referrals to services.
3) Write it down.
You are about to alter the lives of these parents, please don’t assume that they will hear or comprehend anything that you say beyond “I’m sorry Mr. and Mrs.… Your son or daughter is being diagnosed with… “
Everything you say after that statement is a crapshoot. Assume that maybe 25 percent of it will be heard, understood and able to be acted upon, and that’s probably an overestimate. Often times parents are in shock, they may be in denial, they are grieving in our offices, while we ramble on about the next steps to take. Anything that you can write down will be helpful. Write down the official, specific name of the diagnosis you are giving. Write down the names of some reputable websites, because you know the first thing they will do when they get home will be to google that name and you want them to find information that will be helpful, not harmful. Write down the next steps that they need to take to get the services necessary for their child and those ideas for things they can do to work with their child at home that we talked about above. The easiest way to do this would be to have a form made up for each of the diagnoses you typically give with all the specific follow up plans listed. It does not need to become an arduous paperwork dilemma for you as a professional, I know I certainly don’t need any more paperwork at my job. Finding a simple and straightforward way to get this information to the family so that they can access it and act upon it once they have digested what you have said to them is likely to be invaluable in the days and weeks following that appointment.
4. Know the services in your community.
Be familiar with the services and supports in your local community, and share them with families liberally. Some families are extremely resourceful, they almost do our job for us. These folks can be a great resource to teach us about services that we might want to suggest to other families. However, there are some families who have a very difficult time figuring out what services exist that are appropriate for their child and how to go about getting the services initiated. In order for us to share this information with families, we have to know about it. We have to be aware of what’s out there for the type of children that we see on a regular basis. Most of the work I do revolves around treating children with neurodevelopmental disabilities, so I try to be very aware of the services and supports in my region for these families. I also make it a point to check with families about what services they have found successful, they are truly the most knowledgeable people about what services are out there and what has worked for their child.
When I learned that my son had a stroke I wanted answers, I wanted to know what the future holds, I wanted to hear that other mother’s had been through this and how they managed. We got referrals to early intervention and outpatient therapy services, however, none of the amazing doctors we saw ever shared with us information about Children’s Hemiplegia and Stroke Association (CHASA). CHASA is an amazing organization that most people either find on their own (thank goodness for google) or they learn about it from a mom in a therapist’s office, or they don’t find it at all. Connecting with other parents can be one of the most helpful parts of the healing process after a family learns of a new diagnosis. Hearing other parents reassure them that this is not the end of the world, and that there are still many opportunities for positive outcomes, or even just they know how difficult it is and understand, can do wonders for a parent who has recently learned of a new diagnosis.
If you are familiar with organizations, support groups, adaptive sports, wheelchair accessible transportation or therapeutic activities that may benefit the children you see, share them with the families! Include them on the list you made above after reading number three.
5) Choose your words carefully.
Be very cautious in the wording you use when a parent asks you those dreaded questions, “will my child ever…” These are some of the toughest questions for me, because the reality is that I don’t have a crystal ball and I cannot see the future. And I’m guessing you can’t either. Every single child is different and unique and the combination of genetics, willpower, good therapy, active family members and the severity of the underlying challenges all play a role in the outcome. For me, I try to provide a range of possible outcomes, and make sure to be clear that I really can’t see the future for their child but that starting services as soon as possible is likely to lead to a more positive outcome overall.
I have heard from many parents that they were told by their child’s doctor that they would never walk, crawl, talk, feed themselves, go to college, ride a bike, etc. and here they are doing those very things. Luckily, those parents did not let that prediction keep them from trying, since clearly what was thought to be impossible wound up as just the opposite. It’s important to also be cautious when you’re making predictions the other way. I know it seems comforting to make positive statements, but when they don’t pan out, families often feel mislead, or worse, guilty, as if it’s their fault for not working hard enough with the child. I recall a friend sharing with me that her child’s neurologist had told her “by the time he hits kindergarten no one will be able to tell he’d had a stroke”. This mother worked tirelessly with her son, had him in frequent and very intensive therapy from infancy on up. However, despite these efforts, this child is not yet walking independently, and he is now in middle school. We simply don’t know, we make our best, most educated guesses but we don’t know what the future will hold, so unless it is an absolute, avoid making absolute statements.
Also be aware of your audience when choosing words to describe your procedures and inform parents. While behind closed doors we may be quite blunt when discussing cases amongst professionals sharing a case or consulting. However, when talking to a parent, try to use gentler words. The day that the surgeon operating on my son’s brain described the procedure to us, explaining that “when we cut into his brain, black blood that looked like motor oil started pouring out all over the table” is forever engrained in my mind. I get it, the blood was old and had been there a while. But I did not need that image of my baby laying on an operating table with black blood pouring out of his head! All I needed to know as a parent was that the bleeding in my child’s brain had happened some time ago.
6) Use person-first language.
Not only will using person-first language help keep it fresh in your mind that you’re talking about a child with a disability versus a disabled child, the child who has an autism spectrum disorder versus an autistic child. These little human beings are people, children, sons and daughters before they are disabled or autistic or otherwise challenged. It is important for us, as professionals, to remember that. Additionally, using people first language is respectful to the family you’re talking to. This is their child, their heart that exists outside of their own body, this little person is not a disability or a diagnosis. While they may be affected by these challenges, these challenges are not who they are. Yes it may take a few more syllables to express your point using people first language but they are syllables well worth the time.