10 Patient Rights in America’s Healthcare System

Patients have rights that are granted and enforced by law, such as the Health Insurance Portability and Accountability Act (HIPAA) which protects your medical information from being disclosed without your consent.

Other rights are protected under the law, including the right to emergency care, the right to make treatment decisions (including end-of-life care), the right to appeal medical billings, and the right to refuse treatment if you so choose. Collectively, these are known as the Patients’ Bill of Rights.

Knowing your rights can help you take the appropriate action—including legal action—if those rights are infringed upon.

This article will help you understand 10 patient rights that are protected under U.S. law.

Right to Be Treated With Respect

According to the Patients’ Bill of Rights issued by the U.S. Office of Personnel Management, patients have the right to be treated with courtesy and respect by persons in the healthcare system, including healthcare providers like doctors, nurses, and medical personnel as well as insurance providers.

As a patient, you have the right to be treated without discrimination based on your age, race, ethnicity, color, religion, sex, gender identity, or sexual orientation These rights extend to everyone irrespective of whether they can pay for healthcare or not.

Right to Emergency Care

In 1986, Congress enacted the Emergency Medical Treatment and Labor Act (EMTALA) to ensure that everyone has access to emergency care services regardless of their ability to pay.

Medicare-participating hospitals that offer emergency services are required to provide stabilizing treatment for people with an emergency medical condition. If a hospital is unable to do so within its capability, or if the patient requests it, a transfer would need to be made to a hospital that can.

Right to Obtain Your Medical Records

The Health Insurance Portability and Accountability Act (HIPAA) of 1996 gives patients the right to get their medical records. This can include notes written by their physicians, medical test results, and other documents related to their care.

Right to Privacy of Your Medical Records

Under HIPAA, people also have the right to privacy so that others cannot look at their medical records without their expressed consent.

There are exceptions, however. For instance, medical information can be passed from one physician to another if they are actively participating in your treatment. It can also be shared with insurance providers that are paying for your treatment.

If you choose, you can also sign a form that allows specified individuals, such as a family member, to see your medical records.

Right to Informed Consent

As a patient, you have the right to informed consent. Informed consent means that you have been provided sufficient information about your medical diagnosis and treatment to make an informed decision about your treatment. This includes being given full information about treatment options, possible outcomes, costs, benefits, risks, and information about the doctor or hospital providing care.

The information must be provided in a language you understand without coercion or pressure. Once you have looked at your options, you have the right to choose the treatment you want.

Informed consent must sometimes documented, such as for clinical research or surgical procedures which confirms that you, as the patient, understand the benefits and risks of the procedure.

Parents or legal guardians have the right to make treatment decisions for children under 18. However, in some states, dependents as young as 16 are allowed to make their own treatment decisions.

Right to Refuse Treatment

You also have the right to refuse treatment. Unless you are deemed mentally incompetent in a court of law, the right is sacrosanct (cannot be infringed upon).

There are exceptions and exclusions, including:

• People with psychiatric illness who pose harm to themselves or others
• People with alcohol or substance abuse who have been ordered by a court to undergo treatment
• People with an infectious disease, such as Ebola, who pose significant harm to the community if they are left untreated
• People with an occupational injury who seek to get worker’s compensation benefits

Parents or legal guardians cannot refuse treatment for a child out of religious or cultural reasons if it places the child at risk of avoidable harm. Even so, there must be a consensus between medical experts to override parental rights.

Right to Refuse to Take Part in Research

As obvious as this may seem, you cannot be compelled to take part in medical research. However, there have been occasions when university students or employees have been offered extra credit or rewards to participate in a study. These practices are known as coercion and “undue influence.”

Under the Bill of Rights of Research Participants, you cannot be forced to participate in a study or penalized if you choose not to participate. If you do enroll in a study, you also have the right to stop any time after the study begins.

Right to Receive and Question Itemized Bills for Medical Services

Under HIPAA, you have the right to access your private health information, including itemized billing for medical services. There are also systems in place that allow you to dispute any charge or appeal an insurance claim that costs you more than expected.

Under the No Surprises Act that went into effect on January 1, 2022, providers are required to give you a good-faith estimate of what your cost of care will be. The Centers for Medicare and Medicaid Services (CMS) advises that you can lodge a dispute if the cost of a medical procedure is at least $400 more than the estimate.

Right to Make Decisions About End-of-Life Care

The right of informed choice extends to the decision of how you want to end your life if you receive a terminal diagnosis or have a late-stage disease like cancer.

While the vast majority of states do not allow people to end their lives, either on their own or with the aid of a physician, the Patient Self Determination Act (PDSA) of 1990 provides the right to refuse life-sustaining treatment.

This ensures that the state or family members cannot force treatment on someone who prefers a higher quality of life over a longer quantity of life. To avoid legal challenges, you can enact a living will, sign a do-not-resuscitate (DNR) order, or issue a medical power of attorney to someone you trust.

Right to Make Decisions Regarding Organ Donation

Under the Uniform Anatomical Gift Act (UAGA) of 2006, you have the right to allow or prevent your organs from being donated if you die suddenly. The law permits organ donation without family consent if you designate yourself as a donor on a driver’s license, donor card, or donor registry.

Without these mechanisms in place, your surviving spouse or family members are allowed to make the decision on your behalf.

If you choose not to donate your organs for religious, cultural, or personal reasons, you can opt out on your driver’s license application. Otherwise, you need to advise your loved ones of your wishes and formalize them in your living will or other advanced directive.

How to Protect Your Patient Rights

While there are laws in place to protect your rights as a patient, you have responsibilities as well. To better protect yourself and ensure peace of mind, there are several things you can do:

• Ask questions if you do not understand what your healthcare provider is telling you.
• Seek a second opinion if you are not getting the information you need in a language you understand.
• Request a cost estimate before agreeing to any treatment. The estimate should itemized and include all associated costs, such as anesthesia services or facility costs.
• Prepare a living will or durable power of attorney for healthcare so that your wishes are adhered to if you become incapacitated.
• If you have a billing dispute, contact your insurance company or engage a patient advocate to walk you through the process of lodging a dispute.
• If you have been discriminated against, file a civil rights dispute with the Office of Civil Rights at (800) 368-1019.
  

Summary

Patients in the U.S. healthcare system have certain rights provided to them under the law. These include the right to emergency care, the right to their medical records, the right to informed consent, and the right to make decisions regarding their end-of-life or organ donation.

Some rights, while strongly enforced, have limitations. There are instances, for example, where your medical records can be shared with other physicians treating you. Similarly, while you can refuse treatment for yourself, you generally cannot do so for your child if reasonable, life-sustaining treatments are available.

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

1. Centers for Disease Control and Prevention. Health Insurance Portability and Accountability Act of 1996 (HIPAA).
2. U.S. Office of Personnel Management. Patients' Bill of Rights.
3. Centers for Medicare and Medicaid Services. Emergency Medical Treatment & Labor Act (EMTALA).
4. Department of Health & Human Services. Individuals’ right under HIPAA to access their health information 45 CFR § 164.524.
5. American Medical Association. Informed consent.
6. Hein IM, De Vries MC, Troost PW, Meynen G, Van Goudoever JB, Lindauer RJL. Informed consent instead of assent is appropriate in children from the age of twelve: policy implications of new findings on children’s competence to consent to clinical research. BMC Medical Ethics. 2015;16(1):76. doi:10.1186/s12910-015-0067-z
7. Cornell Law School. Amdt5.4.6.10.1 right to refuse medical treatment.
8. Katz AL, Webb SA; American Academy of Pediatrics Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;138(2):e20161485. doi:10.1542/peds.2016-1485
9. Department of Health and Human Service. Informed consent FAQs.
10. University of Iowa Human Studies Office. Bill of rights for research participants.
11. Centers for Medicare and Medicaid Services. The No Surprises Act protects people from unexpected medical bills.
12. Library of Congress. H.R.4449 - Patient Self Determination Act of 1990.
13. Glazier AK. Organ donation and the principles of gift law. Clin J Am Soc Nephrol. 2018 Aug 7;13(8):1283–1284. doi:10.2215/CJN.03740318

By Trisha Torrey
Trisha Torrey is a patient empowerment and advocacy consultant. She has written several books about patient advocacy and how to best navigate the healthcare system.

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