Your patient rights include the right to refuse treatment and the right of informed consent, and informed consent covers procedures and genetic testing as well as treatments. Informed consent is the process in which your health care provider gives you the information you need to make decisions about your care, and a no is one of those decisions. Other patient rights include being treated with respect and not being discriminated against in your medical care. Federal law protects some patient rights, such as getting a copy of your medical records and keeping them private and secure. Many states have added laws of their own, and some states, insurance plans, medical organizations and health care facilities have their own patient bill of rights, so ask your doctor's office whether it has one.
When you can say no to a test your doctor recommended
The right to refuse treatment comes with one condition: that you are able to understand your health condition, your treatment options, and the risks and benefits of each option. The condition is about being able to understand: someone with advanced dementia, or in a coma, cannot take in the information needed to decide, and a provider then tries to get consent from a substitute decision-maker instead. Not having followed every part of the explanation is a different matter, and one you can fix before you decide: ask your doctor about anything you did not understand, and if the first explanation did not work, ask them to explain it a different way.
Your doctor is allowed to disagree with you. A provider may tell you they do not think declining is the best choice for you, but providers should not try to force a treatment on you that you do not want. An opinion that you are making a mistake is advice, and you can hear it out and still decline.
The explanation you were owed, and the questions to ask now
By law, your health care providers must explain your health condition and your treatment choices to you. When a provider asks for your informed consent to a treatment, the explanation must cover:
- what your health problem is, and why the treatment is being offered
- what happens while it is done
- what the risks are, and how likely each one is
- how likely it is to work
- whether it has to happen now or can wait, and what waiting would lead to
- what other options there are for your health problem
- risks or side effects that may appear later on
Some tests are part of the same process. Among the procedures that may need your written consent, which means signing a form, are advanced or complex medical tests, such as an endoscopy or a needle biopsy of the liver. A test you are not asked to sign for should still come with an explanation: you should be told what is being done and why, and before a screening test such as a PSA blood test, a Pap test or a mammogram, that means knowing its pros, its cons and the reasons for it (see Weight care is not a checkup, so the screenings are still yours to book).
Whatever the test, ask your doctor early on whether it can wait and what waiting would lead to, because the answer tells you how long you have to decide and what a no puts at risk. Then ask about the test itself:
- what the test is for
- how the test is done, and how it will feel
- what you need to do to get ready for it
- how and when you will get the results
If what puts you off is the preparation or the discomfort, those answers matter most, and if you are worried you will not manage the instructions, tell your doctor so. If a suggested treatment makes you uncomfortable, ask whether other treatments might work, and if cost is a concern, whether less expensive choices are available. Both questions work for a test as well, and the answers let your doctor work out a plan with you that fits what you need. For more detail about your choices, ask your doctor where to look, since there are trusted websites and other resources your provider can give you.
A no in your records, and who sees it
Your records, including anything they say about the test, can go to another provider or health plan only when they are needed for your treatment or for payment, or with your permission. The HIPAA Privacy Rule does not require your doctor to share your information with other providers either (see Does your old doctor have to send your file to the new one?).
You do not have to guess what, if anything, was written. You have the right to see and get copies of your health information, with a few exceptions, and in most cases you can have the copy the way you want it, such as by email. Your doctor normally has up to 30 days to provide it and often can do so much sooner, and if the practice offers a web portal, you may be able to view and download your health information whenever you want. If you think something in it is wrong or missing, you can ask your doctor to fix it (see Correcting a wrong diagnosis in your medical record).
If you change your mind, or feel pressured
A no does not lock you in. You have the right to change your mind about consent at any time, so you can take back an agreement you already gave, including one you signed. A no can be revisited too: if you later want the test, ask your doctor whether it is still the right test for you.
If the conversation turns into pressure while you are in a hospital, ask the doctors and nurses looking after you whether the hospital has a patient advocate. Many hospitals have patient advocates, people who can help guide you through the health care system and make sure your rights are protected. If you feel you have been discriminated against in your medical care, or think your health information privacy rights have been violated, you can file a complaint with the federal Office for Civil Rights, known as OCR.
Answering the office's next reminder
When your doctor's office reminds you about the test again, phone it and give the answer that fits where you are now.
- Nobody has explained the test to you: say you want the explanation before you decide, and ask to talk it through with your doctor.
- It was explained and you still do not want it: say so in one sentence, such as “I have decided not to have this test for now.” If nobody told you whether it can wait, ask the office to have your doctor tell you.
- You are not sure what you were told: repeat what you understood in your own words and ask your doctor to correct anything you got wrong.
Repeating it back is a check providers may use too. Your provider should make sure you understand the information, and one way is to ask you to repeat it in your own words, which is called teaching back. Doing it yourself gets you the same check when nobody offers it.
If you are in weight care with NicoCares and the test bears on it, send your questions about it through Spruce, the app where your care team answers messages. Whether a declined test changes your weight plan is decided by your physician, who is licensed in your state and makes the clinical decisions in your care.
Saying no does not change the reason your doctor recommended the test. The answers about waiting and about the alternatives stay worth having after you have decided, because they might change your mind, and if they do, phone the office, ask whether the test is still recommended, and book it.
