Patient Rights and Protections Under U.S. and State Laws

Healthcare Law

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

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.

Refusing Treatment

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.

End-of-Life Care

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.

Privacy

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.

State Laws

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.

Conclusion

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.

Finding the Right Primary Care Doctor

The “right” doctor for you will treat you with respect, communicate in a way that works for you, coordinate all of your healthcare needs and doctors, be available when you need her/him, and be aware of what matters to you. They may not be the “right” doctor for someone else.

 Finding the right doctor involves putting together information from many different sources, including your insurance provider, personal observations, doctors, friends, family, the Internet, and other patients. This section will guide you through the process and discuss the sources you might use to make your decisions. You will also learn how to evaluate the information you get from those sources, and what questions to ask doctors when you are deciding who is best for you. 

Choosing a Primary Care Physician

Tip: The first decision you should make is who will be your primary physician.

 In an ideal situation this is the doctor who will help you make the right choices based on your medical situation and your preferences. If you are in an HMO, your primary physician will be required to manage your referrals to specialists. Even if you’re not in an HMO you will want your primary doctor to know who you ae and what you want, coordinate your healthcare, explain things you don’t understand, connect you with other providers and services, and advise you about your choices and their consequences.

Step 1

First consider the qualities you want in your top doctor. A few key qualities to consider include;

  • years of experience.
  • education background; including their residency.
  • male or female.
  • convenience of practice; location and hours.
  • after hours access to help.
  • communication methods; phone, email, text, etc.
  • designation as a medical home.

The “medical home” practice model is a team-based model. The doctors who follow the principles of the medical home take the lead for each patient’s medical team, while the team collectively takes responsibility for providing the patient’s health care needs. In 2007, several of the leading medical organizations, including the American Academy of Family Physicians, American Academy of Pediatrics, American College of Doctors, and American Osteopathic Association released the “Joint Principles of the Patient-Centered Medical Home.” The principles are:

  • Each patient has an ongoing relationship with a personal doctor trained to be the primary contact. That doctor provides continuous and comprehensive care.
  • A personal doctor leads a team of individuals at the practice who collectively take responsibility for the ongoing care of each patient.
  • A personal doctor is responsible for providing all the patient’s health care needs, or taking responsibility for appropriately arranging care with other qualified professionals.
  • Care is coordinated and/or integrated across all providers including specialists, hospitals, home health agencies, nursing homes, etc.
  • Quality and safety are enhanced through care plans, evidence-based medicine, clinical decision-support tools, performance measurement, active participation of patients in decision-making, information technology, and quality improvement activities.
  • Patients have open access to care via email, flexible scheduling, convenient hours, telehealth, quick and effective communication, and other means.
  • Payments should reflect the value of the work that is done both inside and outside of the face-to-face visit.

Step 2

Identify three to five doctors in your insurance network that meet your criteria by using your health insurance Provider Directory. Find the type of doctor that meet your needs. The most common primary physicians are Family Practice, Internal Medicine, General Practice, and in some cases for women OB/GYN.If you don’t know how to access the Provider Directory call your health insurance customer service number.

Step 3

Review the qualifications of each physician. The medical credentials such as the medical school a doctor went too, and where they did their residency often indicate how well a doctor performed during their early training. A doctor’s credentials may also show you if a doctor has achieved a level of expertise and knowledge that the Medical Board that oversees their specialty feels qualifies that doctor for certification.    

 Often these basic qualifications can be checked in your health insurance provider’s handbook or on their web site as a part of the listings for the doctors who are in their network. There are also many web sites that offer this information about doctors. Some of the leading websites for physician ratings and reviews can be found at www.aPatientsPlace,com. One of the best sources outside of your insurance provider is the professional medical association that licenses, certifies, and supports the doctor’s practice specialty. Another great source is the www.healthfinder.gov web site..

You can check if your doctor is Board Certified at the web site www.abms.org. There is no cost to register, and you can look up as many as five doctors each day. Board certification means that the doctor has completed an approved residency program and passed a detailed written exam in at least one of 24 specialty areas, such as family practice, internal medicine, or obstetrics and gynecology. Most doctors must renew their certification every five or ten years. Sometimes older doctors do not need to renew their certifications due to rules that cover experienced doctors. If the doctor is not board certified, find a different doctor.

Another simple way to find a doctor’s basic qualifications, and a little about their practice at the same time, is to call their office and ask their staff. If the doctor or their staff is hesitant to answer your questions, if their phones are not answered quickly, or you are put on hold for more than a few minutes, you should think about how you would feel if you were their patient and the same things were happening to you.

Tip: Start building a relationship with your doctor ASAP. Consider that a typical primary care physician may have 2,000 to 3,000 patients, and they may see as many as 30 patients on busy days.

Step 4

Contact the practice by phone.

Here are some questions to ask the practice administrator or the receptionist during your initial phone call…

  1. Is the doctor taking new patients?
  2. Do you accept my insurance?
  3. How long does it usually take to get an appointment?
  4. How long does the doctor usually spend with each patient during an appointment?
  5. Can I get a same day appointment in an emergency, or if I am in pain?
  6. What are the office hours?

If the practice receptionist has the time, additional questions that you might ask include;

  • Who will see me when the doctor is not available if I have a problem, question, or concern?
  • Is the doctor part of a group practice? Where can I get more information about the other doctors?
  • Which hospitals does the doctor use?
  • What is your cancellation policy?
  • Is lab work done in the office, or at an off-site facility?
  • Do you help patients with their insurance claims?

Step 5

Check for Criminal Conduct. You can look this up on the web at www.fsmb.org. That site lists each individual state’s medical board site. There you can search under professional misconduct to see if your doctor has been listed. You might be surprised by what you find. You might also consider checking the federal government’s Open Payments database to see if their doctors receive payments from drug makers or medical device manufacturers. The Open Payments database can be accessed at https://www.cms.gov/openpayments/.

Step 6

Check the Doctor’s Reputation. There are several ways to check a doctor’s reputation. Remember though, that another patient’s experience, or a list of “top doctors” may not be based solely on facts. Information from patients, other health professionals, and subjective sources should be confirmed by at least two other sources if possible. Here are some ways to find more about your doctor’s reputation:

  • Ask the doctor’s current patients. When you are waiting to see the doctor, talk to a few other patients in the waiting room. Tell them that you are a new patient, and ask them what they like most and least about the doctor and practice.
  • You can also learn about a doctor’s reputation from other health care professionals.
  • If you prefer, you can look online at the growing number of web sites that publish information from patients and health care professionals about their experiences with specific doctors. The web site http://www.yelp.com is one such example. A more complete list can be found at www.aPatientsPlace.com.
  • You can also search for “patient chat rooms” or “patient referrals” in your local area using your favorite Internet search engine. Sometimes, local magazines and web sites even publish lists of your area’s “best doctors.” Although, being listed as a top doctor in a publication or on a website does not necessarily mean that they are a good doctor.

The best doctor to work with will be open and honest about his or her limitations. A doctor’s attitude towards patients who would like a second opinion does not provide insight about the reputation of the doctor. It does show a lot about their comfort for recognizing that their patients are at the center of the health care system. Good doctors will welcome another opinion. If they are unwilling or resistant to refer their patients to other specialists this may be a sign of arrogance, or caring more about their ego than the well-being of the patient.

Some hospitals and health providers have phone or online doctor referral services. Usually you can find out if your hospital or health system has such a service simply by calling their main number or going to their web site.

Tip: Do not call 800 numbers at the local hospital as your only source during your search for a doctor. Many hospitals and health systems use these services to influence you to choose the doctors who drive the most revenue to the hospital, or to help a new practice add patients, or increase the use of a new treatment.

Step 7

Ask for Referrals. Since the early days of medicine, referrals have been one of the primary ways that people learned of doctors who might help them. Referrals from someone you trust gives you the advantage of learning from someone else’s experience. The most likely sources for referrals are your primary doctor, a nurse that you know, your family, a friend, a neighbor, or a co-worker. Consider though, that the experience of the person referring the doctor to you may not be similar to what you experience.

Tip: The fact that the person giving you a referral had a positive experience, or that they have been using the same doctor for  many years does not mean that they are getting good care, or that you will.

 There are also web sites that are set up by other health care professionals to help people find doctors. Examples are http://www.FindADoc.com and www.DoctorScorecard.com. There are also social networking sites like http://www.Yelp.comthat let users post and read comments about local doctors and practices. One of the challenges with online reviews is that you can’t always be certain that the reviews are authentic, or that they aren’t written by friends. Not to mention that patient reviews are often only written by people who either hate or love their doctors.

Step 8

Consider Ratings. Health insurance companies have been rating the performance of doctors for years, but consumers seem to prefer the opinion of their peers over a company that might have a financial interest in their ratings. Information and ratings from insurance providers and hospitals may also be influenced by the financial goals of the organization.  Some experts feel that ratings tend to influence patients to see the least expensive instead of the best doctors. However, if your insurance provider web site tells you how many procedures a doctor has done or other facts about the doctor that can be very helpful information.

Tip: Patient chat rooms and discussion groups can be an excellent source of referrals and information for everything from doctors to nursing homes to therapists. There are many patient chat rooms available at www.aPatientsPlace.com.

Step 9

Schedule an “Interview” Appointment. Meet and talk to every doctor, or at least their Practice Manager before trusting them with your treatment and/or care. Most practices have set aside a few time slots for new patients to come in and speak with the doctors. You might want to think through some of the following questions before scheduling an interview appointment.

  • Where is the practice located?
  • Will it be easy for you to get there?
  • Is it accessible by public transportation?
  • Is there ample parking?
  • Which hospital(s) does the doctor use?
  • Are you comfortable with the possibility of being treated at one of these institutions should the need arise?
  • Where are routine x-rays and laboratory studies performed? Can these be done in-office, or will you have to go to an outside laboratory?
  • How long must you wait for an appointment after you call? Can you be seen on the same day if you have an urgent need?
  • Is the office staff friendly and courteous?
  • If you call with a question about your care, does a doctor or nurse return your call promptly?
  • Who covers for the doctor when he/she is away?
  • Whom should you call if you have a problem after-hours?
  • If the doctor works in a group, are you comfortable with being seen by one of the practice partners?
  • Does the doctor frequently refer patients to other specialists, or does he/she prefer to manage the majority of your care?
  • Does the office process insurance claims, or must you pay up-front for services and file the claims yourself?
  • How long will you have to wait for an appointment? Look for practices that offer “open-access” scheduling, in which doctors typically leave part of each day’s schedule un-booked so they can offer some same-day appointments.
  • Do they keep paper or electronic medical records? Computer-based record-keeping is considered a major step toward improving the quality and efficiency of medical care. But not all doctors use electronic records.
  • Do they take questions by secure e-mail or text? E-mail “conversation” is great for problems or advice about a chronic disease, an appointment, test results, clarification of some item that came up during an office encounter, an overlooked question, a medication side effect, or any question requiring only a yes or no answer. And it’s a direct link to your doctor, without a telephone intermediary such as a nurse or assistant and can supplement your time with you.

During your initial appointment, you want to consider if the doctor …

  • Communicates openly and honestly.
  • Encourages you to ask questions.
  • Listens to your opinions and concerns.
  • Answers your questions.
  • Is not defensive.
  • Has experience treating your medical condition successfully.
  • Will spend the right amount of time with you.
  • Respects your preferences.
  • Explains things in way that you are comfortable with.

You should always work with a Board-Certified doctor. This means that they have completed residency training in a specific field following graduation from medical school, and they have passed a competency examination in that field.

Tips: 

  • Contact your insurance provider to discuss your options, and get an updated copy of your insurance plan benefits.
  • Check each doctor’s qualifications.
  • Make sure the doctor accepts your insurance. Why pay yourself if there is an excellent doctor in your insurance provider’s network?
  • Disregard advertisements.
  • When your doctor refers you to a specialist, always ask for two different recommendations.
  • Don’t wait in an office for more than an hour. Having to wait for hours may mean the doctor is under-staffed.
  • If you have no insurance or only have Medicaid, go to a clinic at a university medical center.

Additional information on finding specialists and working with doctors is available at https://apatientsplace.com/

Is Doctors Lying to Patients Ever OK?

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We all know the healthcare system is difficult at best and more likely just broken. A recent Medscape poll of 286 physicians and 362 RNs and APRNs reported that at least some physicians felt it was OK to lie to patients about a medical error (17%), prognosis (14%), and to get treatment (24%).

There’s more information about lying to patients in this report from Medscape.

While it’s understandable that any clinician might lie if they felt they were helping a patient, doesn’t that reinforce a dangerous presumption that doctors know better than patients what’s in the patient’s interest?

Two questions that need to be asked in future polls are “how do patients feel about doctors and nurses lying to them,” and “how will we activate patients to contribute to their care teams if we don’t trust them with the truth?”