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12 Rights I Had as a Parent When My Child Was in the Hospital

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I have been wanting to write this post for a very long time. My daughter who is 2 years old has been in the hospital nine times (that’s the inpatient number, that doesn’t include the many emergency room visits), and many of these hospitals have been all over the country.

She has been inpatient in two children’s hospitals in Georgia, one hospital in Boston and two different hospitals in Colorado. During these hospital stays I have learned so much —  so much that sometimes I feel like I could write a book!

While I do not plan on writing a book on this topic, I did want to write a blog post about it because I have heard so many hospital horror stories and it makes me so upset. We as parents have many rights given to us when we or our children are in the hospital. While not all hospitals will acknowledge these rights and while every hospital and every state and every country has different standards, these are just few things that I as a parent could request when my child was in the hospital.

Many of these I did not know until we were told or until we figured it out ourselves, and that’s why I wrote this: so our experiences could help other parents who are also fighting for their kids in the hospital, too.

Please keep in mind this is not legal advice and each hospital’s rights and rules may vary.

1. I could request to see a social worker.

Hospital social workers were there to help my child and my family through the hospital stay. Some of their jobs are to:

“…help families understand a particular illness, work through the emotions of a diagnosis, and provide counseling. Social workers are can also work in concert with doctors, nurses, and allied health professionals. They help sensitize other health care providers to the social and emotional aspects of a patient’s illness. Hospital social workers use case management skills to help patients and their families address and resolve the social, financial and psychological problems related to their health condition,” according to the National Association of Social Workers.

I have loved the social workers in every hospital we have been in. They usually are so sweet and so kind, and they were able to help with resources (local and inside the hospital) that I may or may not know about. If your child is admitted to the hospital, they may be able to send a social worker to talk with you.

2. I could request to talk to a patient advocate.

After my daughter’s two surgeries, the nurse and technician had no idea what medications she was given and if or when she needed more. We were very upset. We requested to talk to the hospital’s patient advocate and filed an official complaint. Medication is not something you mess around with and it was definitely not something that should have happened.

I could also file an official “grievance” which should be investigated by the hospital and the Joint Commission.

3. I could request to stay if I was uncomfortable with my child being sent home.

This is one I definitely wasn’t aware of for awhile. Some hospitals will even ask if I am comfortable with taking my child home or if I want to stay another night. I could also use this in the ER if they want to send my child home, but I think more needs to be done.

I could say something like, “I’m not comfortable leaving yet, is there anything else you can do?” or “I’m not comfortable going home, I think ____ needs to be done first.”

4. I was able to request a different nurse or technician.

This is one we have used several times. We’ve had a couple nurses who were just awful and my husband would go to the desk and ask if we could have a different nurse assigned to us. Usually it wasn’t a problem and they could switch my nurse with another.

5. I am allowed to have a say in who can and can’t be involved in my child’s care. This includes students and residents and applies to teaching hospitals as well.

A lot of hospitals will have days where students will come by and practice doing things in the pediatric floor. For the most part, I have not minded that. Every Tuesday in one hospital the students would come in and they would bathe and play with my daughter. She loved it, and I did, too!

There have been times, however, when we had a resident doing most of my daughter’s care and I didn’t care for the resident. The residents tend to think of themselves as just as good as doctors. Sometimes, yes, that’s the case, but sometimes not. Sometimes care could get confusing when I had several doctors and a resident all telling me different things, so having a say in who has access to my child’s care and who doesn’t can be helpful.

6. I could request to move to a different hospital if I was not satisfied with my child’s care.

This is not one that we have had to do (yet), but some hospitals cannot give the kind of care your child may need depending on how serious their condition is. Some hospitals just have horrible care and you can ask to be moved to a different one.

7. I was allowed to request that specific tests be done. 

This is an important one. When my daughter was in the hospital for two weeks in Atlanta and they were trying to figure out what was wrong, I did my own research and requested several tests to be done.

They were doing plenty of tests, but when I researched and saw one of the big things of “failure to thrive” can be heart problems, I immediately asked them to do two heart tests. The doctors agreed with my research and did the tests and that gave me the courage to continue to ask for certain tests in the future if I thought it might help tell us what was wrong.

8. My child had the right to have her pain managed effectively.

Sometimes Tylenol is just not enough — especially after a surgery. If my child was in pain even after getting pain medication, I could talk to my child’s doctor about what he can do to help her and manage her pain more effectively.

9. I could request that the hospital staff or doctor call my child’s pediatrician for a consult.

My child’s pediatrician knows my child best. They have a history with my child, plus all their records. It can be very important to get the pediatrician’s take on what’s going on in the hospital and what he thinks should be done, too.

I have lost track of how many times we have requested this, but it helps each and every time. There’s something about having a doctor who knows my child’s medical past talk to a hospital doctor that changes everything — especially if the hospital tends to not side with parents.

10. I was allowed to have access to all films, records, labs and reports on my child.

I love this because there are times where doctors and staff make mistakes. They are human and can make errors at times, too. When I have access to my child’s lab work I can research what the levels or numbers should be. When I have access to my child’s records I can read over things that the doctor may or may not have already told me. Remember: Knowledge is power.

11. I was allowed to participate in rounds or call a team meeting of all doctors and specialists.

Most mornings when we were in the hospital we would have all the doctors and staff on our daughter’s team come in and give us updates, information on tests and labs, and answer any questions we have. This is called “rounds.” It is important that you know that this is your time to ask your questions and say anything you need to say.

We also have requested a team meeting of all the specialists working on our daughter’s case. When we were in Boston, all 14 specialists sat down with us and had a meeting on my daughter’s case. It was one of the most amazing things I’ve ever seen and doesn’t happen often!

12. I was allowed to ask for a second opinion from a different doctor in the same hospital.

Just like I was allowed to ask for a different nurse or tech (see number 4), I could also request to get a second opinion from another doctor in the hospital. This may be difficult when my child is in the ER, and may be easier if my child is inpatient.

Sometimes doctors will do this anyways and will ask a colleague for a second opinion. We’ve had this done several times and it can definitely be confusing if you get two different answers. Just make sure you do your research and go with your gut!

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow this journey on Singing Through the Rain.

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Originally published: March 28, 2016
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