Advocating for Yourself
If there is one thing I have talked about a lot in my journey with kidney disease and dialysis, it is probably how to advocate for yourself. Self-advocacy is a term you hear a lot in association with dialysis. When you start dialysis, chances are that you will have a whole team of people to interact with on a fairly regular basis such as doctors, nurses, technicians, dietitians, etc. In my experience talking with other patients, it seems like there are a lot of people that don’t like to ask questions because they feel as though they are questioning the doctor’s expertise and that it may come across as disrespectful. I have also talked to people who have very little faith in their healthcare team and their list of complaints reads like a bad Yelp review. When you are dealing with a lot of people, there will be times when you may not see eye to eye with everyone. However, I want other patients to know that there is a way to find a diplomatic, respectful middle ground. One thing I cannot stress enough is that YOU, the patient, have an active role in making decisions that affect YOUR health care. You hold the power when it comes to speaking up and advocating for yourself. Here are some ways to create good communication between you and your healthcare team to ensure that you are getting the best care possible.
Speak up. If something doesn’t seem or feel right, then say something. When I was a child struggling with kidney disease, I once had a nurse that almost gave me the wrong medication. Luckily my mom spoke up and nicely, but assertively told the nurse that she didn’t think that medication was correct and had the nurse double check with the doctor. The nurse came back and said that my mom was indeed correct. These days, I don’t have my mom to advocate for me and say something. It is your responsibility to know what medications you are taking and the doses. It’s a good idea to have any medications that you take written down or typed out. Make sure to check it periodically and keep it updated. I have mine typed up and saved in a PDF on my desktop. If anything changes, I can update it immediately with any changes. It is also not a bad idea to take a notebook with you to any appointments to write down any changes. This will help to avoid any confusion. There is also nothing wrong with asking the nurse or tech to just double check for your own piece of mind. I know this can be hard for some people to speak up. Being assertive doesn’t always come naturally and like most things, it just takes practice. However, this is your health care and you shouldn’t feel bad about saying something. If it is hard for you, just remember to be diplomatic and empathetic. They shouldn’t take it personally if you have a necessary request. If you are a naturally assertive person, try to find that balance between speaking up while not being rude.
Don’t be afraid to ask questions. You’ve heard the phrase, “There are no dumb questions.” It is true especially when it comes to your health. This is your opportunity so ask away! Doctors expect you to have questions and will try to do their best to answer them. Also, get to know your care team and who does what. They are an incredibly valuable resource and are there to help you in any way they can. They also have access to other resources such as websites, books, or pamphlets that can help you out. Again, it is not a bad idea to have a notebook or planner to keep track of any questions you have as well as any information you want to relay to your care team. Coming to appointments prepared will help you use that time more efficiently. You can also bring a friend or family member with you to appointments to help ask questions or take notes. It doesn’t hurt to have another pair of ears in case you miss something. I would usually bring my husband and sometimes he would think of questions that I forgot to ask. He could also help take notes for me in case I missed anything.
Be honest. One of the best things to do is just be open and honest with your healthcare team. Their job is to help you and by communicating things with them, this helps them to better help you. They are not there to judge you. Make sure you are communicating any concerns or problems you are having. Again, they have great resources and can point you in the right direction to help you manage your care.
Know how to file a complaint if there is an issue. I know it can be so tempting to get on Facebook and complain. We’ve all gone there to vent at some point. However, if you have a legitimate concern, you need to know how to file a grievance the right way so that it can be resolved swiftly. Take your complaint to the head of the clinic or facility. Each facility should have a policy regarding its formal complaint process or a Patient Bill of Rights. When reiterating your grievance, make sure to be clear and give accurate examples. Try not to make a general complaint about what is wrong with the situation.
And remember to be nice. I know this can be tough when you’re grumpy and don’t feel good. We all have bad days where we just don’t feel like going to another appointment. However, going in with a bad attitude can make it worse. Try to remember to be gracious and make saying, “Thank you” a habit. Your care team really does just want to help you to get the best care. And if you do notice something good, speak up and let them know! Doctors and nurses have things going on in their lives just like us. They have bad days too. Saying a kind word or noticing a job well done could just make someone’s day.
Other patient resources:
American Association of Kidney Patients
Lacy Smith
February 16th, 2022