I saw a familiar post on Facebook today:
“The doctors said she would never talk, but here she is singing her A, B, Cs!”
As the mom of a child with a developmentally devastating condition (first infantile spasms, now Lennox-Gastaut Syndrome and autism), I have been on the receiving end of a lot of bad news in the hospital setting. I have also had my share of terribly insensitive encounters, such as the story I share in this post.
As an advocate for parents like me, I have heard many tales of bad bedside manner, but I also know that’s not always what motivates parents to make posts like this. I think what’s often going on is that they are giving themselves permission to hope, and the most validating thing in the world is to prove an expert wrong. This isn’t about their child singing the A,B,Cs. This is about all the other things they hope for that still hang, precariously, in the balance.
I feel protective of these parents, because I know too well how traumatic incidents with insensitive health care workers, teachers, and therapists in my own journey with Charlie have eroded my faith and trust in the world. Epilepsy aside, try to find a mother of four who hasn’t had at least a few negative interactions with the health care system. We all do.
But as a research data analyst who has supported some of the finest physicians in the world for more than two decades, I also feel protective of physicians. Not always, but often, after a conversation with parents who make these odds-defying posts, I will learn that what the physician actually did was to share the evidence, and the evidence is often quite bleak when it comes to conditions like infantile spasms. The physician may have also shared a link to the early intervention program in the area, which is exactly what a physician should do. The parent is interpreting that as, “the doctor is saying my baby will never walk, just like the kids in the article.” It’s not that the parent is lying. That’s what she heard. When your sweet baby gets a diagnosis like infantile spasms, it’s like someone fired a gun right next to your ear, then started giving you the details of the most life-altering news you ever heard, in a language other than your native tongue.
Nobody wants to be called out on social media, especially if your words are going to be twisted. So, maybe the best thing is to not even try to predict the future and wait and see what happens. Right? Wrong! For many families like mine, not sharing information about prognosis can have devastating results.
It has been almost a decade since epilepsy hijacked our lives. My son, Charlie, now functions at about a 1-2 year old level in most areas. As Charlie was growing up, social media has exploded, allowing patients, scientists, and clinicians to connect in miraculous ways. Without a proper study I can’t say if there is a definitive correlation, but I have observed this: since social media has become so popular, physicians (and educators) are becoming less and less candid with me about Charlie’s prognosis. And that’s a big problem. If no one will acknowledge that, for example, with his medical history, if you are in the shape he’s in at age 10, you’re unlikely to live independently, I can’t properly advocate for skilled support when he transitions to adulthood. I can’t impress upon his current teachers why he should be learning life skills, and that it is his catastrophic brain damage, multiple medications, and daily seizures, not laziness, that is keeping him from learning basic concepts like letter sounds and number quantities. Severity=services, and my inability to get the medical community to acknowledge the severity of his prognosis is giving public administrators permission to not spend money on him. Nobody wants to be the doctor who says “he will never…” even though, we all know that for some things, Charlie will at least “probably never.”
What can be done? How can you be honest with your patients without sending the message that all hope is lost? Caregivers, how can we learn how and what to ask for, at our appropriate time and stage in the journey?
Physicians:
1. When interacting with a family that is facing a life changing diagnosis, asking you for evidence, send them my blog post about how to search for and interpret scientific studies.
2. Find a peer in the community (or even send them to me–I do this all the time). After the initial shock has worn off, when parents see me living my life with four happy kids and a successful career while, yes, managing the daily needs of a severely disabled child, they start to see themselves in me and slowly accept their new normal.
3. Always balance data with a sense of wonder. I had a neurologist once tell me to never trust a doctor who says she knows exactly what’s going to happen developmentally, because if you’ve been doing this long enough you have seen exceptions. Explicitly state, “I am very definitely NOT saying ‘never.'” And then share honest stories of the spectrum of outcomes that you have observed.
Caregivers:
1. Be up front and clear about where your head is at when it comes to looking too far into the future. It’s OK to tell your doctor, “Look, I am still processing all of this. I want to focus on tomorrow and next week, not twenty years from now.”
2. Set realistic expectations on the information that your doctor can provide. Do some homework on the nature of literature in your condition and how to read a paper. Read this post and see what kind of studies exist. These are the same studies your doctor is looking at. If it’s a very rare condition, your doctor might not have a lot of good information and can only compare with the few other patients he or she has seen. Those patients, and their circumstances, may be very different (and worse) than yours, so take heart.
3. Recognize that literature is often several years old. It takes a long time and a lot of money to gather good data on long-term outcomes. In other words, we won’t know how all of the latest treatments, early diagnoses, therapies, etc, have impacted our kids for maybe 20 years. We just don’t know, so a doctor’s best guess is often just that, a best guess.
4. Surround yourself with resources. I wrote this piece on how to create an advocacy toolkit because I know that the most optimistic families have resources and support.
5. It it’s not a good fit, it’s OK to say so and move on. I switched neurologists early on when I felt like he was giving up on Charlie. It was definitely the right decision, but I now understand that the reality is that he likely thought he was doing the right thing, but his bedside manner was rough because he had a huge caseload of very sick kids, was competing to become the chair of his department, and probably never got any sleep. I was SO ANGRY with him for so long, and then one day bumped into him at a conference while I was pushing Charlie in a wheelchair. He gazed down at Charlie with a haunting look in his eyes, and I realized I wasn’t the only person still traumatized from watching my baby suffer.
If
you think you have found a good doctor, try to be gentle with them. If the relationship is worth saving, try to
remember that your physician has to deliver life-altering bad news to MANY
families just like yours, day after day, week after week. Like you, they are
only human, and want nothing more than for your child to prove them wrong.