After going through five hospitalizations with Hannah, I have dealt with just about everyone in the medical field. Attendings, fellows, residents, nurses, medical students, child life specialists, respiratory therapists, I could go on. If they work in a hospital, I have probably come in contact with them. Most of our experiences have been excellent, but I do feel there are certain things the medical community should stop doing.
1. Defining patients by their diagnosis. I can’t even count the amount of times I have heard doctors say, “Hannah is downs,” or “Hannah is trisomy 21.” This is honestly one of my biggest pet peeves, and I notice every single time someone says it. As medical professionals, I would think they would be well aware of people first language, but apparently that is not something taught in medical school. Having to hear over and over during each hospital stay that, “Hannah is trisomy 21” is extremely frustrating, and makes apparent how much progress we still have to make in respecting those of different abilities. Hannah is not, and never will be Trisomy 21.
2. Refusing to do reasonable tests. There have been several times when I requested a specific test to be done, but the doctor didn’t think it was necessary. In my experience, they usually either drag their feet, or flat out refuse to do the test. As long as it is within reason, a doctor should not refuse to perform a test at the parent’s request. When Hannah was in the hospital for pleural effusions following her open heart surgery, I asked repeatedly for more testing to be done. They were convinced she had a simple virus, and would just need supportive care until she recovered. It took two full days of Hannah screaming in pain, having a respiration rate near 100, and not eating anything for them to finally listen to me and perform the chest x-ray I had requested. Doctors do not know everything, and they can be wrong. We, as parents, know our children best. If a parent thinks a specific test could be beneficial, take a step back, look at the big picture, ask if it’s within reason, and just do it. They are more than likely asking for a good reason, especially if it’s going to cause their child pain.
3. Talking loudly when a child is sleeping. This one might seem trivial, but when you’ve been in the hospital for an extended period of time, sleep is precious to both the parent and child. Rest is essential for healing, so it’s in everyone’s best interest for the child to get as much rest as possible. It seems to never fail that as soon as Hannah falls asleep, someone walks into the room. Is it really too much to ask for everyone to lower their voices just a bit? We have had some really great staff who are very considerate, and then we have had others who simply feel the need to shout everything across the room. For the sake of everyone, if there is a sleeping child or parent, please lower your voice just a bit.
4. Waking babies up at night without trying to put them back to sleep. This one goes hand in hand with number 3, and is mostly directed at nurses. When it is 3:00 AM, and you have to come in for vitals and wake a baby up in the process, please at least try to put them back to sleep. I fully understand that I am the parent, and it is my responsibility to take care of my child, but just a few pats on her butt to try to calm her would be greatly appreciated. During hospital stays, everyone is sleep deprived, and nobody wants to deal with a grumpy baby or parent, so it would be beneficial for everyone if you at least try to calm a baby after you wake them.
5. Giving medicines without asking the parents first. I’m fairly certain this one is actually never supposed to happen, but it does, and has happened to us multiple times. Let me just say, that coming back from running (sometimes literally) to the cafeteria to get something to eat for the first time that day at 5:00 PM and finding out that your child was given a new medicine, is one of the most frustrating things I have ever experienced. Worse still, is not even being told your child is on a new medication until rounds the next morning. Unless there is a life threatening emergency, the child can go 15 more minutes without that medication until the parents come back from eating. And there is really no excuse to give a new medicine when the parents are gone and not inform them of it right when they return. Parents should always be informed what the medication is for, and be told of potential side effects before it’s administered.
6. Doing something a parent specifically said not to do. Thankfully, this has been a rare experience for us, but it has happened. There is absolutely no excuse for going directly against something a parent says. We had an echocardiogram technician ignore us and the nurse when she was told not to perform an echo until oral sedation was given. In my opinion, going against a parent is one of the worst things a medical professional could ever do. Yes, we are in the hospital receiving care. Yes, the child is sick. No, that does not give you the right to do whatever you want to them. Parents have the ultimate authority, unless they are doing something life threatening to the child, but that’s a whole different issue. If the parent is fit to make decisions, those decisions should be listened to, whether you disagree with them or not. After all, everyone wants what is best for the child.
7. Being disrespectful. Honestly, this is something everyone should stop doing, but in the medical profession, respect is especially important. Odds are that during extended hospital stays, there are going to be disagreements between the medical staff and the parents; that’s a given. However, disagreeing can and should be done respectfully. Whether you think something a parent does or says is incorrect, there is no need to treat them as though they are second class citizens simply because they don’t have letters after their name. For some parents, the hospital is their home away from home. They may not have formal schooling, but odds are, if their child has a chronic illness or challenge, they know it inside and out; have some respect for that. You may see children with the same illness day in and day out, but there is no one that is exactly like their child, and they know their child best. So, when disagreements arise, have a little respect for the fact that the parents live with the child day in and day out. Have respect for the fact that their entire lives are affected by their child’s medical condition. Likewise, parents need to have respect for the experience and knowledge doctors have.