Inside the NICU

Evidence-Based Living

Next week, a team from our unit is going to the Neonatal Developmental and Behavioural Care conference in New Orleans, which is incredibly exciting. I’ve been mulling over my parts of our presentations, and I find myself coming back to the idea of “Evidence-Based Living”.  To be more specific, I’ve learned a lot from medical professionals about the importance of evidence and how to use it, and I’m interested in finding a way of applying those ways of thinking to the decisions (both medical and other) I make for myself and for my family. There are so many therapies, programs and possibilities out there … how can we choose the right path?

So, with the help of my colleagues, I came up with a list of questions to ask myself before embarking on a particular intervention or program.

1. What is my/our/the clinician’s motivation for seeking an intervention?

2. How risky is the intervention?

3. What is the evidence for/against the intervention?  (Higher risk = higher burden of proof)

4. Where is the proof coming from?

5. How expensive is the intervention?

6. What is the impact on the child/family?

7. What are the consequences of doing nothing vs. the consequences of doing something?

Depending on what the goal is, I may not need to work through the entire list. Ideally, if it’s a serious issue, I could work through this list with a clinical professional, but for some issues I could probably do it on my own.

Let’s address something that I have some experience with …. babies who won’t sleep!  Even though I’m well past this stage, I’ll talk about it like it’s happening now. (It doesn’t feel that long ago!)

Let’s say I have a kind Aunt Mildred who says to me, “I used to put my baby to sleep on her tummy and she was just fine. Babies sleep better that way!”  So I’m motivated by lack of sleep (a powerful motivator), and the specific question I’m asking is, “Should I try putting my baby to sleep on her tummy?”

First question: I want better sleep for my baby. Is the lack of sleep a serious problem? Well, it’s having a big impact on our lives, but my baby is growing okay and it doesn’t seem to be bothering her. So I can take time to find the right solution. It’s serious enough though that I need to address it, and it’s serious enough that I would like to get expert advice on the topic.  At this point, I might make an appointment to talk with my pediatrician, or keep doing some research on my own. I know I need to take action.

Next, how risky is this intervention? A quick internet search shows the connection between Sudden Infant Death Syndrome and tummy sleeping. Sure, there are individual parents, just like Aunt Mildred, saying their babies sleep on their tummies and are fine. But then there are the stories from grieving parents who tell a different story. There are some websites that say it’s fine, but they don’t offer any evidence for their claims, and they also are selling sleep positioning aids which I’ve heard aren’t safe. Also, the list of studies identifying death as a potential risk of tummy sleeping is long, and there are hundreds of sites that I trust that say don’t do it.  So in this case, the potential risk (death) is so high it completely takes this option off my list.  I don’t need to ask myself any of those other questions. (The story of what I did do is a topic for another post.)

Let’s work through another hypothetical situation. Let’s say another parent has told me about an experimental physical therapy that will help my child with her fine motor concerns. The therapy is new, very expensive, there’s not a lot of research done on it yet, but some clinicians we know are very excited about it.

So I want to help my daughter with her motor issues, and make her feel more confident in school. There’s also an emotional component for me because I’m so worried about how she’s being treated by her peers. The fine motor issues aren’t a life or death problem, but I believe they are having an impact on my child’s life and happiness. So I see this as something that requires a solution.  The intervention isn’t physically risky, and won’t do her any physical harm.

Since it’s not risky, I’m not as concerned about the lack of research, and I’m impressed by what other parents and clinicians are saying about it. The proof that exists is coming from people I trust, so that’s a positive.

The program is really, really expensive, and it requires hours of involvement every week. So if we do it, it might mean no family vacation, or one parent working part-time, or other kids not doing extra-curricular activities.  It may still be worth it, but I need to be really clear on what kind of impact the money/time commitment will have on all of us, and our whole family needs to be in agreement.

The question that will really determine what we do next is the final one. If we do nothing, my kid might not progress in that particular area, but will continue to benefit from all the other stuff we can keep doing if we don’t do the  new therapy. I might feel pretty guilty about not trying it, though.  That guilt can’t be ignored; it is another factor to be considered. If we proceed, she might make those advances and that would be wonderful, and if she doesn’t, at least I’ll know we tried.

Looking at it in this way, there are so many reasonable decisions a parent might make. In this case, I might talk with the therapists and ask how long it might take to see if this therapy is working for my child. I should also talk to other families, some who have chosen to intervene and others who have chosen not to, to hear their perspectives. Then we as a family might make the decision to try it for a specified time frame. Depending on how it’s progressing and how my child responds to it (both physically and emotionally), we will either proceed with it or stop it.

We could also decide that it’s not worth it because of the time and money, and that instead we will try to help her using therapies that fit into our family life.  We may need to disentangle her goals from our goals, and realize that she may not need “fixing”, but rather her environment needs to accommodate her. That would also be a reasonable, responsible, loving decision to make.  Sometimes we, as parents, feel we need to try every door and every window if we think there’s even a small chance it will help our child … and it’s important that we know it’s okay to say no sometimes.  The child or patient is not always the one who should change.

This list can help me with my decisions, and (as one Facebook commenter pointed out), it could be very helpful to use with a partner or joint decision-maker in order to get everyone on the same page. Now, how can clinicians work with this list?

I’ll give an example from my own life. After my second daughter was born, I was very, very sick, and my kidneys started to fail. My doctors came to talk to me about dialysis, which I found very frightening. I asked my nephrologist if I could bring my friend, a traditional Chinese doctor, to the hospital to help me. He didn’t make fun of me or immediately say no. Instead, he said, “You’re an adult, and you can make choices about your own health. In this case, I don’t know enough about Traditional Chinese Medicine to say much. My only concern is that if she gives you herbs, they may cause problems with the medications you’re getting. But if she can come and do acupuncture, and that would make you feel better, then you absolutely have my blessing.”

As it turns out, she did come, and I did immediately feel better, and I didn’t have to go through dialysis. I like to think it was because of my friend, but I don’t know, and that’s not really my point. My point is that my nephrologist’s response was just about perfect; it was respectful and it identified where the risk might be. He didn’t attack my friend (which would have put my trust in him at risk), and he certainly didn’t attack me (which would have absolutely destroyed my trust in him).

So, after all of this … here is my question to you. Do you think this framework is helpful?  If you are considering therapies or interventions for your child or for yourself, do these questions help you make a decision? Is there anything missing?

Thank you!

(And thank you to Sue, Louise, Karine and Kirsten who gave me great comments which prompted some changes to the original version. I’m not sure that I’ve done your comments justice, so please consider this a work in progress!)


About the author

Kate Robson