Tubies Provide Tips for Advocating for Yourself

Medically Reviewed by Janel Ganz, BSN, RN, Enteral Feeding Specialist

You may not be a doctor or a researcher, but no one knows your body like you do. That is one of the reasons why it is important to learn to speak up for yourself and your healthcare goals. We all want our visit with our healthcare team to go perfectly and smoothly, but that is not always the case. There will be different experiences with healthcare teams across the world. This depends on the level of their experience with your illness, tube, formula, etc. That is why it is important to learn how to talk about your needs and wants. It’s important to ask questions about what your healthcare team recommends.

This article was written after talking to people with feeding tubes whom all had advice on speaking up for themselves and their needs, just like you.

If your healthcare team recommended getting a feeding tube, it probably sounds overwhelming. It may have come at a time when you were also overwhelmed by severe symptoms. You may have been unable to keep food down, had cramping or diarrhea, been losing weight or feeling tired and dehydrated. The point when you just want the symptoms to stop is the worst time to have to decide or ask questions about treatment.

There are a couple of things you can do to help lower your worries and help you make choices that feel right for your own health, whether you’re just getting a tube or you’ve been tube feeding for a while. Knowledge is power.

Get Comfortable with Discomfort

Discomfort does not always mean physical pain. In this case, it means being feeling a little uneasy to try something new, like speaking up for yourself. You had symptoms that were uncomfortable or scary, you had tests, you received treatment, and hopefully the discomfort is much lower. The same goes for speaking up. The first time you ask your healthcare team “What are my treatment options?” or tell them “That treatment or medication did not help my symptoms. Let’s try something else,” it is uncomfortable. But the more you practice using your voice, the better you will get at it.

“Patients: you do have a right to voice your opinion,” says Tonya H., who has a gastrostomy (G) tube and also gets parenteral nutrition. “There’s a tactful way that you can do it…let the doctor know, ‘I’m uncomfortable with trying that’ or ‘Can we try A before we try C?’”

Call in Reinforcements

Reinforcements mean someone who can support you or help you speak up. There is probably a friend or family member in your life who knows the symptoms you are having and has heard you describe how it feels. Maybe there is someone in your life that you trust to share your concerns and to help advocate for you! That is the kind of person to have by your side when you talk with your health care team.

• If you have the time and energy, tell your friends or family about your health and your treatment. Put it in an email, if you want, so your health care buddy can have it close to hand on their phone.
• Choose someone who is comfortable taking notes and asking questions alongside you and backing you up when you talk about your symptoms, pain, and needs.
• Having someone along with you during your tube feeding journey will help you feel like you matter.
• Former tubie, Leiann H., has support from her husband, whom she says “has the biggest heart you could possibly imagine.” He not only learned about her gastroparesis, the formula she used, and the supplies she needed, but also studied hospital billing and diagnostic codes to help her navigate insurance coverage.
  

Start a Logbook

A logbook helps you monitor your health and listen to your body. It is a good way to track changes over time and a quick reference for when the healthcare team asks how long you have had symptoms or how long it has been since you last had those symptoms. Every person we spoke to said how important it is to keep a record of your treatment.

• A logbook can be done virtually or physically.
• While your healthcare team may know your history and what you need, what if you need supplies or have an emergency while traveling?
• Keep your medical documents and treatment plans handy.
• Keep the names and contact information of your gastroenterologist, your surgeon, your dietitian, your home care company or home health aide.
• It is useful to have emergency contacts written somewhere in case you cannot get to your phone.
• Take pictures of your prescriptions, your tube and extension set, your pump, and your formula if you use commercially produced formula.
• If you have had a reaction to a medication or treatment, write it down.
• If a special blended recipe made you feel great, write it down.
• Write down questions you want to ask your healthcare team and the answers to those questions when you get them.
• Always consult your healthcare team before changing your formula, fluid intake, etc.
  

Ask Questions

• Ask the experts. Doctors, surgeons, nurses, and dietitians are involved in helping enteral feeding patients. You can ask any or all of them. If one does not know the answer, ask them who will know the answer. If it is not an emergency, it is okay to put off making decisions about your treatment until you have the information you want.
• Ask the internet. Just because you do not know someone personally who has a diagnosis like yours or uses the same tube or formula does not mean you are alone in the world. With global social media, we are more connected than ever. The tubies we spoke to said they heard from other patients on forums like Reddit or searched tags on Facebook. We do not recommend trying a treatment you find online, but the web can be a way to learn about treatment options so you can ask your doctor later.
• Join a support group to find information. “There are lots of groups out there for every condition you can think of,” says Tonya H. If no groups meet in your area or you can’t travel, there are online support groups as well. Our partners at the Oley Foundation have lots of tube feeding support groups and other resources.
  

Know It is Okay to Walk Away

Just like you will not connect deeply with every person you meet, you may find at some point in your journey that you do not mesh well with someone from the healthcare team. If you feel like your needs are not met, you are not being listened to or want a second opinion, it is okay to look for, or ask for, another provider. The choices you have may depend on where you live and what kind of insurance you have. It is important to see if a change in your healthcare team could help you.

“Things that doctors have done that really helped me is to not assume they know something, even if they’ve seen another patient presenting similarly,” says Jordan M., who has a gastro-jejunal (GJ) tube. She says the way doctors speak with patients also goes a long way in building trust.

The best partner in your healthcare is just that: a partner. “It’s great when you have a doctor that can share your goals…which is to help you live a better, healthier life,” says Tonya H.