Could you hold your daughter tightly for just a second? - the use of physical restraint in children's hospitals

This is THE question I get asked most often when in hospital. And no, I’m not talking about giving my little special needs girl a big hug, this is about physical restraint. It seems like an innocent question because it’s only ‘just a sec’, right? Well, for my daughter it’s never just a second. And every time I wonder: is there any other way?

So, what’s the situation?

Every time I visit one of our Dutch hospitals (4 different ones) with my undiagnosed daughter with special needs, she is held tightly (restrained) to allow a medical test or procedure. We as parents are asked to hold her tight, and a lot of times more nurses (or other professionals) are brought in to help hold her down. Even with the smallest thing, such as examining her ears. 

A 115 times too many

Credit:  Katie Little, 123RF Stockfoto

There was this one year where I counted every medical ‘thing’ that my daughter had to go through. 32 times blood samples were taken, 68 examinations were done, we had 63 overnight stays in hospitals, 7 one-day stays and we visited the emergency room 15 times. This adds up to a 115 times in 1 year that my child was physically restrained in order to examine her or take some kind of medical test. This is just unacceptable! But this is how it goes when we go to the hospital…

Painful shots

The 32 times that blood had to be drawn, no pain relieving ointment was applied to make the procedure painless. I didn’t even know that those kinds of ointments exist. Odd though that nobody ever suggested this possibility. I remember one occasion where my little girl was restrained by 5 people in order to inject her with a contrast fluid, in her head… How intimidating and scary is that? 5 grownups all holding you down, so you can’t move or do anything, and then there’s that painful jab in your head!    

Trauma

The negative consequences are clearly noticeable with my daughter. It has gotten to the point where she panics even when a doctor or nurse is just trying to measure her blood pressure. She doesn’t even accept being weighed anymore. Let alone that she has to lay down on an examination table for an ultrasound of her kidney’s. There is no distracting her at all anymore. My girl doesn’t trust anyone when she’s in hospital and she knows all too well who or what she needs to keep her eye on, and it’s not her toy or a TV! I mean, there is an obvious reason we already visited a clinical psychologist for all these trauma’s. 

Are there no other ways?

Every hospital visit, every test and scan I heard myself say to her countless times: ‘It’ll be over soon’. And I used to sit there with a pit in my stomach and feeling so relieved when it was over so that I could comfort her. My struggle with the use of physical restraint keeps getting bigger and bigger. Luckily we often see doctors and nurses who are willing to take some time to see what the best approach might be. But every time it still comes down to us holding our daughter. There seems to be no alternative. At least, none are offered to us. 

Just hold her

And then there are some doctors who see it as a part of their job. One told me: ‘All three year olds don’t like this examination.’ Well, that might be the case, but is that what makes it okay? And besides, not all three year olds get restrained a 115 times a year!

When an X-ray of my daughter’s hips had to be made the other day, the nurse declared: ‘I don’t have time to discuss how we’re going to do this. If you would just hold her tightly, I will take the X-ray. She won’t remember it anyway.’ This remark was so wrong on so many levels! But hey, these ‘2 hips’ had to hurry up, because the next ‘2 hips’ were already sitting in the waiting room… 

Mental disability is a complicating factor

The fact that my daughter is mentally disabled doesn’t make all this any easier. She has no clue what is going to happen to her. Unfortunately I cannot prepare her. Even though I do tell her what’s about to happen, she doesn’t understand any of it. It takes her by surprise. Every. Single. Time. And each time she panics. So when we were visiting our ENT specialist, I again wondered: is there no other way? Her answer was clear: no. ‘It’s either holding her tightly or using an anaesthetic. And for these simple examinations we never use anaesthetics, so we always choose to use restraint.’

Balance & guilt

So which alternative do I have? I have to find a balance between my child’s interests, my own thoughts and feelings and the way of life in hospitals. From a parent’s perspective it’s a no brainer: if anyone has to hold my child, then it’ll be me. I will, of course, choose what seems the lesser of two evils but it does not make me feel any less guilty. My mother’s heart hurts to see my little girl experiencing even the most simple health checks as such a terrible thing. 

Can restraint always be prevented?

No, I don’t think so. Not when there’s a life threatening situation. Then you have to act immediately. But I strongly believe that you must prevent it from happening whenever possible. And I also believe that parents and children have to be informed about which options are available to them. In my opinion this goes for all parents and children that come to a hospital, special needs or not. 

More roads to travel

I am convinced that no one intentionally wants to use restraint during examinations or medical procedures. Neither healthcare professionals, nor parents and children. So how did we get to this point where this ‘culture’ can exist and we find this all so very normal?

I did some checking and it turns out that there are indeed more roads to travel. And that restraint can be prevented most of the time. By using hypnosis, comfort talk or medication, for example. How come I didn’t know about this? I’m astonished that not one of our 25 doctors ever informed me of my options for my daughter. And to think that we regularly visit 4 different hospitals in The Netherlands!

Progress & start project 2019

However, I did make progress. I found our mental disability physician willing to make tailor made plans for my daughter. So for each check-up or medical procedure we are deciding what the best approach is for my little girl with special needs. I am very happy about that!  

And I spoke to Dr. Piet Leroy and to Hester Rippen, director of the ‘Child and Hospital Foundation’ in The Netherlands. Piet Leroy is a children intensivist at Maastricht UMC+ and a leading expert on treating children without restraint, pain and stress (paediatric procedural sedation and analgesia). 

Together we are starting a project where we collect all available knowledge and turn it into useful information for all hospitals and children health care professionals in The Netherlands and also for parents and children. Our goal is to allow them to make informed decisions and help preventing restraint, encouraging painless procedures and minimizing stress! 

I am honoured to have been the keynote speaker opening the very first European Conference on Paediatric Procedural Sedation and Analgesia. Check PROSA2018.com for more information.

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