Effective patient advocacy begins by knowing your rights under state and federal laws. Too many times, people give up the fight for their own health and well-being because it’s not always easy. This article helps to clarify the current rights that patients have been granted and are enforced through our federal and state laws.
The patient rights that we hear people refer to most often are the right to…
1. Receive clear and understandable explanations in order to choose a treatment or course of action based on the available options and their benefits, the risks, the likely outcomes, and the alternatives. This is commonly called Informed Consent.
2. Refuse treatment.
3. Make decisions about end-of-life care.
4. Obtain your medical records, including doctor’s notes, medical test results, and other documentation related to their care.
5. Be treated with respect by providers, practitioners, and payers.
6. Privacy of your medical records; (see HIPAA, 1996).
Let’s start by looking at the key patient rights as guaranteed by Federal law.
Informed Consent is intended to ensure that a patient can make a well-informed decision about their care. It is a process where a health care provider educates a patient about the benefits, risks, likely outcomes, and alternatives of a procedure, test, intervention, or course of action. At its core informed consent means that a patient must be provided with and understand the information needed to make decisions about their health care; including 1. Their diagnosis, and 2. The purpose, benefits, risks, likely outcomes, side effects, and alternatives of any proposed test, surgical procedure, medical procedure, treatment, or course of action.
Patients also have a responsibility to ask their physician and health care providers to explain what things mean. If a patient does not fully understand the benefits, risks, and likely outcomes of any course of action they need to keep asking for an explanation of what everything means until they do understand. In most cases patients are asked to provide their written consent for any course of action to proceed.
Certainly, there are situations such as emergencies or extremely fragile patients when it may not be possible to get informed consent. In most cases parents can give informed consent for their minor children. Although state laws very and some states do make exceptions for minors to provide informed consent.
Patients must be competent to give voluntary and informed consent. This means having the ability to make an informed decision. Doctors often refer to this ability as having decision-making capacity. To have decision-making capacity a patient must understand their options, the risks and consequences, and the costs and likely benefits of the consequences. Mental illness, mental retardation, alcohol and drug intoxication, altered mental status, brain injury, and age restrictions are all examples that may make a patient incapable to provide their consent.
Patients have a right to refuse treatment in most cases. Exceptions are;
1. Emergencies when immediate treatment is needed for the patient’s safety or to save their life.
2. When patients have an altered mental status due to drugs, alcohol, brain injury, or illness.
3. Parents can’t refuse life-saving treatment for a minor.
4. When refusal of treatment poses a threat to the community.
Patients have the right to refuse life extending treatment at the end of their life. This right was guaranteed to Americans through the Patient Self-Determination Act of 1991. It requires nursing homes, home health agencies, and others to provide patients with information on advance directives. Advance directives are designed to give instructions on the medical interventions a person wants once they have had emergency treatment. It is usually directed towards the staff at a hospital, nursing home, or home care agency.
A relatively new document called a Physician’s Orders for Life-Sustaining Treatment (POLST) is available to patients with chronic or life-threatening illnesses in some states. A POLST is designed to instruct emergency personnel on what actions to take while you’re still at home.
Your Medical Records
The Privacy Rule under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), provides individuals with a legal, enforceable right to see and receive copies upon request of their medical and other health records maintained by their health providers and health plans, and to direct the covered entity to transmit a copy to a designated person or entity of the individual’s choice. This includes medical records; billing and payment records; insurance information; clinical laboratory test results; medical images; wellness and disease management program files; and clinical case notes; and other information used to make decisions about individuals. Psychotherapy notes maintained separate from the rest of the patient’s medical record, and information compiled in anticipation or use in a civil, criminal, or administrative action are excluded from this right of access.
HIPAA laws do not keep all others, other than the person, their doctors, and their caregivers, from accessing an individual’s medical records. Individually identifiable records, which contain personal attributes, and aggregated medical records, in which individuals can’t be identified, are both shared and purchased. Under HIPAA laws covered entities have a right to access your medical records if they follow strict rules. Covered entities include doctors, allied medical professionals, facilities, technology providers, payers, and the government.
The general guidelines under HIPAA are;
1. You have a legal right to copies of your medical records.
2. You can designate someone else to get copies of your medical records.
3. Your health care providers have a right to see and share your medical records with others who you given permission.
4. Any payer that pays for a portion of your health care may get a copy and review your medical records.
5. Federal and state government may have a right to your medical records.
6. Companies that keep prescription databases may have information on your prescription drug purchases that they sell to life and disability insurance companies.
Rights in Emergency Departments
Under the Emergency Medical Treatment and Active Labor Act of 1996 (EMTALA), you have a right to emergency care if you are in any incident that is life-threatening or sever, or where bodily functions or organs are seriously impaired, or any incident where delivery is imminent in a pregnant woman. Under EMTALA emergency departments (ED) must:
1. Provide a screening examination.
2. Stabilize anyone with an emergency medical condition.
3. Arrange for transfer to another facility if the ED can’t stabilize you.
You cannot be turned away because you can’t pay. Although, you are responsible for the full bill, even if you don’t have health insurance. There are many ways to work out payment arrangements; including charitable care. If you go to an emergency room for a non-life threatening prenatal care, wellness checks, health screenings, follow up, doctor visits, or non-life threatening conditions such as flu, fever, colds, rashes, sore throats, etc., you do not have a right to care.
Other Federal Laws
The Patient Protection and Affordable Care Act (ACA) of 2019
The Affordable Care Act includes a Patient Bill of Rights (PBR) that gives Americans the following protections;
a. Section 1557 prohibits discrimination in the basis of race, color, national origin, sex, age, or disability in certain programs and activities. Section 1557 also extends protections granted under Federal civil rights laws, including; (Title VI of the Civil Rights Acts of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973, and the Age Discrimination Act of 1975) to individuals participating in 1. Any U.S. Department of Health and Human Services (HHS) funded or administered program or activity, and 2. Health Insurance Marketplaces and all plans offered by issuers participating in those Marketplaces.
b. Requires insurance plans to cover people with pre-existing conditions, including pregnancy, without charging more.
c. Free preventive care.
d. Ends lifetime and yearly dollar limits on the coverage of essential health benefits.
The Stark Law
The purpose of this law, also called the Ethics in Patient Referrals Act (1989), was to curb physician self-referral, or referring patients to hospitals, labs, home health services, medical equipment and devices, therapy. Lab, and other entities or services
from which they or a family member, benefit financially.
The Anti-Kickback Statute
This statute prohibits transactions intended to induce or reward referrals for items or services reimbursed by the federal health care programs. The statute is designed to protect federal program health beneficiaries from the influence of money on referral decisions.
The Health Information Technology for Economic and Clinical Health Act (HITECH)
The HITECH Act was enacted as part of the American Recovery and reinvestment Act (2009) to promote the meaningful use of health information technology by incenting health care providers to adopt electronic health records and adopt privacy and security protections.
The Genetic Information Nondiscrimination Act (GINA) of 2008
GINA protects Americans from being discriminated against based on their genetic information in health insurance and employment.
Many states have enacted laws on the use, collection and disclosure of health information. Some states even detail what each person’s medical record must include. States have also set standards for privacy and confidentiality that often exceed federal laws. Others have set standards for how private health insurers conduct business within their state. For example, because Medicaid is a partnership between the federal government and the states, many states have passed their own regulations on participating providers.
Surprise Medical Bills
Surprise medical bills often occur when someone is treated in an in-network hospital emergency department or facility by out-of-network physicians or other health professionals. As of mid-2019 twenty-eight of the states had enacted consumer protections. As of mid-2019 only thirteen states had protections that limited the consumer’s financial exposure, extended protection to both hospital emergency departments and in-network hospital settings, applied to both HMO and PPO members, prohibited balance billing, and adopted a payment standard or process to resolve payment disputes between providers and payers. The Commonwealth fund as provided an interactive map that reviews the Balance-Billing protections for each state.
Many patient rights are rooted in the American Medical Association (AMA) Code of Medical Ethics. The AMA Code of Medical Ethics guides physicians in their patient and physician interactions, treatments & use of technology, and in their professional relationships and self-regulation. The Patient Bill of Rights (PBR) details each patient’s rights and responsibilities to help improve the quality of your care.
National and state health care laws are changing. It’s important to research the latest laws when you have an issue with your payers, providers, or doctors. We will attempt to update this article as new information becomes publicly available. However, when you have an issue a healthcare attorney in your state should be consulted to ensure that you know the latest federal and state laws.