If you’ve just been diagnosed with aHUS, you may be entering into the patient world in a way you haven't before. Living with a chronic disease means it’s more important than ever to have a solid relationship with your care team.
In order to advocate for and empower yourself at your doctor’s office, get familiar with your rights and responsibilities as a patient.
Know Your Rights
Being a shared decision-maker with your aHUS providers isn’t a best-case scenario, it’s your right. In fact, the U.S. government put official protections in place in 1997 called the Patients’ Bill of Rights. They ensure your right to be treated in specific ways that preserve your dignity and autonomy as a patient.
These rights include:
Informed consent. This means that for any medical decision you make in the management of your aHUS, you should have enough information to understand your diagnosis and all treatment options, in terms you can understand. You can ask as many questions as you need to ensure you know what’s being said and what choices you’re being asked to make.
Choice of provider. You get to decide who treats you for your aHUS. Even if your doctor refers you to a specialist, you have the right to ask for a new referral if the first one isn’t right for you.
Access to emergency care. Health care providers have a responsibility to treat you if you have an emergency medical condition, even if you can’t pay for your treatment.
Respect and nondiscrimination. No matter your age, race, sex, or religion, you have the right to be treated with respect and dignity by your health care providers.
Privacy. You are the decision-maker when it comes to who has access to your medical information. This includes any diagnosis you get, treatment plans you choose, prescriptions you take, genetic information, clinical research records, mental health records, and information about your health insurance. You also have the right to have access to any and all of the medical records your clinic or hospital keeps on you.
Appeal. If you’re concerned about the quality of your treatment, you have the right to a fair process by which you can raise your complaint and have it heard by the hospital or clinic. This includes issues such as long wait times, operating hours, treatment by staff, or concerning actions by a health care provider.
Refusing treatment. You can say no to a treatment, even if it’s life-saving. Ultimately, you are the decision-maker about your body and what goes into it or is done to it.
These rights also come with responsibilities. Your job as an active participant in your care is to follow the treatment you choose to the best of your ability, be open and honest with your provider, treat your health care team with respect, and help resolve financial matters associated with your care.
Learn to Be Research Savvy
To be an empowered, active decision-maker in your aHUS care, you need to know as much as you can about your disease. The term “health literacy” refers to the ability to find, understand, and use information and services so you can make informed health-related decisions. The more health literate you are, the better you can participate in conversations and decisions about your disease.
The websites of medical and health care organizations, hospitals, and academic medical institutions are your best source of aHUS information. Other sound sources include those run by federal government agencies. Some examples include:
- The National Institutes of Health
- aHUS Source
- The CDC
- The National Kidney Foundation
- The American Kidney Fund
- The National Organization for Rare Disorders (NORD)
If you’re unsure about a website’s reliability, try to find out who’s behind it. Did medical experts write the information? Are there sources backing up the information? How long ago was it published? Sources with information even a few years old may be out of date with treatment advances and recommendations.
Show Up for Yourself at Visits
When you’re in front of a medical expert, you may feel intimidated or shy. Prep for each visit so you can go in with the confidence you need to be an active participant in your disease management.
Come with a list of questions. Not only does this prevent you from forgetting what you wanted to ask, but it also helps you think through what the goal of the visit is. Be sure you’re on the same page with your doctor about what your appointment is for. You can call ahead of time if you’re unsure.
Ask your doctor to explain things in plain language. Doctors sometimes use medical terms that sound confusing. Most medical information can be explained in a much simpler way. Ask your doctor to break down any information you’re confused about well enough that you could explain it to someone else.
Bring someone with you. No matter how health literate you are, sometimes emotions get in the way and muddy your thinking. A friend or loved one can be an extra set of ears during doctor visits.
Take notes (or request to record). Your appointment partner can be your note-taker, but if your doctor is comfortable with it, ask if you can record using your phone. You may find it helpful to listen back to instructions or information later when you’re in a different mindset.
Ask as many questions as you need. Don’t be afraid to speak up when you don’t understand, have a concern, or have a question.
Remember, you can get a second opinion. This doesn’t mean you have a poor opinion of your doctor. Your doctor shouldn’t be offended. Most doctors welcome another medical opinion, especially with a rare disease like aHUS.
Show Sources
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SOURCES:
U.S. Office of Personnel Management: “Patients' Bill of Rights.”
CDC: “What Is Health Literacy?”
National Institute on Aging: “How To Find Reliable Health Information Online.”
