Advocating for Yourself

Patient Advocacy

More and more health care organizations have a formal role called a patient advocate who provides direct, personalized assistance to patients and caregivers as they navigate the healthcare system. The following are the responsibilities of a patient advocate:

Assisting patients in obtaining health care
Educating patients and caregivers to help them make well-informed healthcare decisions
Handling patients’ medical care, insurance questions, and administrative and legal chores

It is worth checking with your health care team to see if there is a patient advocate or patient navigator who can assist you. Every organization is different.

You are your own best advocate.

Advocating for yourself as a patient, or for a loved one as a caregiver, means being informed and having a voice in all medical and emotional care.

On this page, we share ways to become an advocate for yourself with tips, lessons and experiences of other patients, caregivers, and family members.

Advocating for Yourself: Tips and Tricks

Often, many heart failure patients and caregivers are required to be advocates for their own care or the care of their loved one. Heather Cartwright, a person living with heart failure, shares tips for self-advocacy below.

Learn more about Heather’s journey “All Aboard! Self-Compassion and Acceptance with Heart Failure”

Develop the Mindset of an Advocate

Accept what is
Do not be intimidated. Be assertive, but polite
Be confident. You likely know as much, or more, about your cardiac condition than many of the health providers you will encounter. Be prepared to educate them on your condition
Be hopeful, not helpless. You’re stronger than you think
Know that your concerns, questions, and fears are legitimate and normal
Know that you deserve good care

Know Your Rights

As a patient, you have the right to:

Make your own decisions regarding your health care
Ask your doctor questions
Request a copy of your medical records
Seek a second opinion
Be treated in a professional and objective way
Talk to someone about an experience that made you feel uncomfortable

Use Technology and the Internet

Refer to credible and trusted health websites, such as major hospitals and government websites, medical journal websites
Print off articles that you have questions about and bring them to your appointments to discuss with your doctor

Tell Others of Your Condition in Case of Emergency

Inform at least one co-worker, travel companion, or sports instructor of your cardiac condition and early warning signs
Have your family and close friends trained in CPR/AED
Wear a MedicAlert bracelet or necklace if required

Trust Your Instincts

You know your body. You know when something is “not right”
Use all the information at your disposal. Connect the dots and ask questions
Don’t give up until you get a diagnosis or are satisfied your concerns have been addressed
A change in mood, depression, or a feeling of impending doom are significant and real signs of cardiac issues
Women’s bodies react differently and more subtly to cardiac issues than men’s bodies. Women should be aware that symptoms may not fit the “classic” symptoms
Know that your symptoms are legitimate and that you deserve good care

Other Tips and Tricks

Know your cardiac condition
Know the name of it (for example, Long QTS, ARVC)
Know your gene mutation if you’ve been genetically tested (for example PkP2)
Know your health history (for example, hospitalizations and Emergency Department visits, ablations, electrophysiological studies)
Know your family cardiac health history
Know your early warning signs
Develop a good partnership with your care team, especially your family doctor, electrophysiologist, and cardiologist. For tips on how to build a relationship with your care team, see our Managing Your Appointments page
Keep a written health journal or an electronic record on your Smart Phone:
- Keep all of your health care providers’ names, contact info, and clinic addresses
- Keep a list and date of all your symptoms and ICD therapy as you experience them
- Make handwritten notes (or voice record) at or immediately after each medical meeting (or have a friend or relative do it)
- Keep a list of all your questions and concerns for your next doctor’s appointment
- Keep copies of your health records and lab tests