Step 1: Take Responsibility

You are responsible for your healthcare and your recovery. Of course, there will be things that happen to us that we cannot change, but there are always things we can change, including our reaction to and feelings about what is happening. If you make a choice that doesn’t turn out like you planned, as we all do at times, find out how to make things better going forward. If you feel you need to make changes to your treatment plan, consult your healthcare team and make it happen.

Keep yourself informed. New information and new treatment options become available all the time, and it helps to learn about them for the future.

Mended Hearts helps keep people informed with:

  • The Mended HeartGuide, patient resource guide, available online
  • Our Heart Failure GoTo Guide
  • Heart Failure Discussion Guides
  • Our national e-newsletter with many updates and resources available to you
  • Our social media sites (Facebook, Twitter, Instagram and LinkedIn)
  • Our online Discussion Communities where patients and caregivers ask questions, get answers, and share information.

Step 2: Educate Yourself

Learning about your heart condition is the first step on your road to recovery and improving your heart health. Educate yourself so you understand your diagnosis and what it means. Ask your doctor or another member of your healthcare team to explain your condition. Don’t be afraid to ask questions and keep asking until you fully understand. Diagrams may also be helpful.

Also, there may be different medications, therapies or treatments available to you, and you may have to ask questions to find out what they are. Most doctors and healthcare professionals want you to ask if you don’t understand.

Questions to ask your doctor, nurse, or other member of your healthcare team:

  • What are some reliable online resources and websites where I can go to learn more about my heart condition and living with heart failure?
  • What are some print resources that are available for me to learn more?

Step 3: Know Your Rights As Patient

Here are some of your rights as a patient:

  • You have the right to be treated as part of the team.
  • You have the right to ask questions and get answers.
  • You have the right to be heard.
  • You have the right to have easy access to notes and medical records as of April 2021 under the CURES Act https://www.opennotes.org/onc-federal-rule/.
  • You have the right to a second opinion (and third and fourth).
  • You have the right to suggest alternatives.
  • You have the right to feel confident in the team.
  • You have the right to change your mind.
  • You have the right to appeal decisions if you don’t agree.

More information about Patient Rights can be found here: Patient Rights (theacpa.org)


Step 4: Be Part of the Team

Patients often feel they aren’t a valuable part of their healthcare team because they don’t have a medical degree, but that’s not the case. You know yourself—your lifestyle, your needs, your preferences, and what is important to you—better than anyone else on your team!

Unless you’re part of the team, your doctors and nurses may miss some valuable information that could improve your care. Also, if something doesn’t feel right for you or work with your lifestyle, speak up and let others on your healthcare team know. Make sure your healthcare team is listening and paying attention to you.

Don’t be afraid to ask as many questions as you need to and to adjust any recommendations that don’t feel right for you. You are not a troublesome patient when you speak up. Part of being on the team is learning all of your options before making a decision; don’t assume the first option is always best. There may be other therapies or treatments to consider.


Step 5: Get information

If you have recently been hospitalized or had surgery, a medical procedure or testing, you can never ask too many questions. Be sure to get all of the information you need about recovery.

Some of the questions to ask include:

  • What is the usual recovery time?
  • What can I expect once recovery is complete? Will my life go back to normal?
  • What complications may occur?
  • What are some possible side effects of my medications and what do I do if they occur?
  • Are there resources to help me keep track of medication and my treatment plan?
  • What activities are safe for me?
  • What foods should I eat more of or avoid?
  • What fluid restrictions do I have, if any?
  • How can I monitor my heart failure at home? What tools or devices can I use?
  • Who do I contact if I have questions?
  • What signs or symptoms should I look for that might require a call to the doctor?
  • What signs would mean for me to call 9-11?
  • What resources are available for me as I recover?

Step 6: Voice Your Opinions

Your voice matters. Your story matters. If you are uncomfortable with something, speak up and ask for a solution. Be kind and considerate in your requests, but don’t be afraid to share your concerns, suggestions, feelings and needs with your healthcare team.

If you’re afraid, for example, let your healthcare team know, and ask about what kind of support and resources are available to you. Advocate for yourself like you would for a close friend or a loved one.

You can start with, “I would like to share some concerns I have with you,” or “I am not sure this treatment option is right for me, and here is why….”

Some patients are afraid that they will be labeled as a “trouble patient,” but the reality is most doctors and nurses value your opinion and want you to let them know. When you share your opinions, they are better able to treat you and keep you out of the hospital. Patients who don’t voice opinions sometimes simply stop medications, treatment plans and/or keeping appointments, and this can have serious consequences.

If you are sharing your opinion about something you learned online, please be sure it is from a reputable source. There is much inaccurate information online. Mended Hearts has many excellent, current and reliable resources on its website at www.mendedhearts.org.


Step 7: Make Informed Decisions That Are Right For You

You are the person who has to live with decisions you make—not your doctor, nurse, surgeon, or other members of your healthcare team, so it’s important to make decisions that are right for you. Shared decision-making means that there is ongoing communication between the patient and the person providing care. Through this communication, the patient and health care provider together decide on treatment.

Shared decision making can only happen when:

  • You are educated and understand the decision you are making.
  • You have information about all your options.
  • You have been given time to digest and think about the decision and ask follow-up questions.
  • You and your loved ones agree about the decision; or even if they don’t agree, they will support you.
  • You are confident in your decision.

Be sure to ask questions and get information so you can be part of making decisions about your healthcare.

 

 

Shared Decision Making Discussion Guide

 

 


 

 

 

7 Steps to Becoming an Empowered Patient

 


Watch the Becoming an Empowered Patient Webinar provided by NeedyMeds.

Watch HERE