The purpose of this course is to prepare healthcare professionals to incorporate patient rights into their practice and patient education.
Upon completion of this self-study module, the participant will be able to:
Patients have both rights and responsibilities when it comes to their health and the health care services they receive. On March 26, 1997, President Bill Clinton appointed an Advisory Commission on Consumer Protection and Quality in Health Care Industry. The Commission issued its final report, Quality First: Better Health Care for All Americans, in March 1998. As part of its work, the Commission issued a Consumer Bill of Rights and Responsibilities. This document was intended to serve as a blueprint for how systems and procedures that aim to protect consumers and ensure the quality of care could be improved. This Consumer Bill of Rights and Responsibilities expressed three goals:
Patients have the right to care, treatment, and services that safeguard their personal dignity and respect their cultural, psychosocial and spiritual values. These values often affect the patient’s treatment needs and preferences. By understanding and respecting patients and their values, providers can help meet the patient’s needs for treatment and services and protect the patient’s rights. Many health plans, including all the plans sponsored by the Federal government, have adopted these general principles. The Consumer Bill of Rights and Responsibilities also lists specific rights and responsibilities that Federal health plans and others have adopted. Under the Conditions of Participation - CMS (Centers for Medicaid and Medicare Services) requires participating hospitals to protect and promote the rights of patients, meaning that patients must be informed of their rights before they accept or refuse treatment. Sometimes, a patient is not able to communicate directly. In this case, patient rights should be discussed with the patient’s legal representative. Patients must be able to understand information about their rights. Some patients need special help to understand. For example, patients who do not speak English have the right to a medical translator or translated materials. They have this right by law. Patient rights fall into seven general areas:
The premise of informed consent is that patients have a moral, legal and ethical right to understand and agree with all aspects of their care, and that includes all potential consequences of accepting or refusing care. The history of informed consent goes back to 1914 when a doctor removed a tumor from the abdomen of a patient who had given consent only to a diagnostic procedure. The case went to court, and the judge ruled in favor of the patient, stating that the doctor was liable for battery because he had, “violated an individual’s fundamental right to decide what is being done with his or her body.” A later case in 1950 that questioned whether a patient was given sufficient information to reach a decision, and raise the issue of potential negligence, laid out the basic components of informed consent.1
Patients in health care facilities have the right to accurate and easily understand information about their health plan, health care professionals and health care facilities. If they speak another language, have physical or mental disabilities appropriate information must be provided to make informed health care decisions. They have the right to know about:
Regulatory agencies require proof that facilities provide this to patients by both direct observation and facility policies. Each facility has its own methods for making sure patients know and understand their rights. Most facilities display the patient rights at intake points in the facility. Many facilities also provide patients with a written form of patient rights at intake during the admission process in patient handbooks. Many facilities also require that the patient, or their legally responsible guardian, sign a document stating that they were provided with patient rights. Rights and responsibilities may also be posted in waiting areas for patients, families, and visitors to review; however, a written list of rights may not be enough. The facility must make sure that all patients understand their rights well enough to exercise them. In fact, this is true of all information. All information must be presented so that the patient can understand it. Facilities must recognize that although a patient may speak English fluently as a second language, it may not be their preferred language for communicating and understanding health care information. Patient’s for whom English is not their first language need to be asked what language they want to use when discussing their healthcare, and their choice adhered to and documented. When the patient does not speak English, it is advisable to use a professional interpreter, rather than a family member who may speak English, to translate. A qualified medical interpreter has knowledge of medical terminology, ethics, and maintaining patient confidentiality. Family members may feel unduly pressured if they are asked to interpret, and may also have valid worries about their ability to do this, but are often hesitant to voice their concerns. The clinician should be especially aware of this with patients from different cultures where issues of intimate healthcare may not be discussed openly and with adult children of the opposite sex. In one instance, an adult son was too embarrassed to ask his mother about vaginal bleeding, and the patient unwittingly consented to a procedure.2 This means that patients may need special help if they do not speak English, cannot hear well, or have other mental or physical barriers to understanding. Examples of special help include:
Patients have the right to participate in decisions about their care and to set the course of their treatment, meaning that patients must be given accurate information. Patients have the right to know their diagnosis, prognosis and treatment options. Healthcare professionals must discuss all treatment options with their patients, which includes the option of no treatment. Further, they need to know the risks, benefits and potential medical consequences of each treatment option.
Discussing clinical information with a patient is part of informed consent. Informed consent is an ongoing process of communication between a healthcare provider and his or her patient. It allows the patient to make intelligent decisions about a proposed course of treatment. Information is useful to a patient only if he or she can understand it. When discussing diagnosis and treatment options with the patient, avoid the use of medical jargon and terminology; seek the services of a translator or interpreter if necessary; and assist the patient in obtaining a second opinion if requested.
Health literacy has become a major focus of healthcare in recent times, and it plays a crucial part in the process of obtaining informed consent. Health literacy has evolved from focusing solely on what the patient understands, to emphasizing the responsibility the clinician has to impart knowledge that is easily understood. The use of plain language has become a pivotal part in all healthcare communication. Plain language is not about ‘dumbing down’ healthcare information, but using words that are part of everyday speech, and if medical terminology must be used it is adequately defined, and explained. Research indicates that most adults in this country have an intermediate level of health literacy, but over one-third of the population have either basic or below basic level of health literacy.2 Clinicians should keep in mind that in stressful situations everyone, regardless of their level of education, can have a difficult time comprehending what they are reading or hearing. Even healthcare providers who suddenly find themselves as the patient and needing to make an informed decision may have difficulty comprehending the situation before them. According to the Institute of Medicine (IOM), inform consent documents are written at a level that is beyond the reading level of most individuals in this country.2 The informed consent process should include a full discussion of the following:
Obtaining informed consent is about more than obtaining a signature on a piece of paper, and ideally, it should be an unhurried collaborative discussion that considers the patient’s beliefs and culture. It is imperative that the clinician verifies that the patient understand the information provided, and this should not be done by simply asking if the patient understands since most patients will automatically answer yes. The best option is ‘teach back’ where the clinician asks the patient to repeat the information given and in their own words.2 The clinician needs to be careful how they phrase this request so that the patient is not ‘put on the spot’ and made to feel that they are being quizzed. The clinician begins by saying, “I want to make sure that I have given you all the information needed for you to make a decision, can you repeat back to me what you have heard?”
After receiving all pertinent information, a patient may give informed consent for treatment or refuse treatment. The clinician needs to anticipate questions that the patient may be hesitant to ask and provide the information. A good way to approach this is by saying, “Many patients who have to make a decision like yours often wonder about . . .” After all the information has been explained to the patient and their questions addressed, the patient should be provided sufficient time to think about the decision they are going to make and not asked to sign the consent form immediately. Except in an emergency, a patient must give his or her informed consent prior to the start of any procedure or treatment. Informed consent or the reason for a patient’s inability to provide informed consent must be documented in the medical record. Patients also have the right to refuse treatment. Even after giving informed consent, patients may change their mind at any time. If the patient decides to withdraw consent, the treatment must be stopped. When a patient refuses treatment, he or she has the right to know what will happen. The patient should receive information on the possible medical and other consequences of refusing treatment. Parents, guardians, family members or other individuals that are designated as the representative of the patient, if he cannot make his/her own decisions, must be provided the same information.
The Patient Self Determination Act became effective December 1991. This law requires that all hospitals receiving Medicare or Medicaid funding provide information to all adult patients upon admission about advanced directives and to ask whether the patient has an advanced directive. In accordance with Federal and State regulations, patients should receive information regarding advanced directives if they do not present with this information at admission. Advanced directives can be used from admission to admission; however, they should be reviewed with the patient at each admission to verify accuracy. If the patient is incompetent at the time of admission, the information should be provided to the surrogate or proxy. If the patient is temporarily incapacitated, the information should be provided when decisional capacity returns. A patient’s right to make decisions about his/her care is true even after the patient is no longer able to communicate those decisions directly. Advance directives can protect people in extreme conditions. These people may be unable to communicate due to a condition such as irreversible brain damage or brain disease that affects the ability to think as well as communicate.
Advanced directives can limit life-prolonging measures when there is little or no chance of recovery. For example, advanced directives may enable patients to make their feelings known about cardiopulmonary resuscitation (CPR), intravenous (IV) therapy, feeding tubes, ventilators and dialysis. Advanced directives can address pain relief – either requesting or refusing it.
An advanced directive is a legal document that allows a patient to participate in future healthcare decisions. There are two forms of advanced directives:
An additional tool for participating in future health care decisions is the do-not-resuscitate (DNR) order. A DNR order states that a patient does not want CPR if he/she goes into cardiac or respiratory arrest. A patient may request a DNR order; however, only a physician can approve and give the order.
Healthcare personnel play a critical role in protecting patient rights related to advance directives. Healthcare personnel must empower patients to complete advanced directives. They must offer information about advanced directives to all adult patients in a language/manner they can understand, and they must help patients who wish to complete an advance directive. Healthcare personnel must respect the decisions in a patient’s advanced directive. Patients frequently have concerns about advance directives, and the information presented to them must lay out what advance directives are, how they will benefit the patient, and that the patient does not relinquish control over their healthcare as soon as they sign an advance directive. All patients need to understand that advance directives give them autonomy over their healthcare and their end-of-life choices. A copy of the directive goes in the patient’s chart. If a copy is not available, the important points of the directive are documented in the medical record. Healthcare providers must follow the directive after it has taken effect.
An advanced directive takes effect only after the patient is no longer able to communicate directly. Until that time, the patient’s direct communication is the only thing that matters. A competent patient may change his/her advanced directive at any time. If a patient wishes to change a directive, the healthcare provider must make it possible. Patient care must NEVER be based on whether the patient has an advanced directive and the decisions in the directive. All patients need to be treated fairly and equally, regardless of advanced directives.
When a patient loses the ability to communicate directly, often he/she does not have an advanced directive. In this situation, treatment wishes should still be respected as much as possible. Florida State Status 765.401 provides for the appointment of health care representatives. To make decisions about the patient’s treatment, the representative should talk to the physician in charge of the patient’s care and consider what the patient would want. The hierarchy of health care decision makers for a patient without an advance directive depends upon state law.
Power of attorney means one person authorizes another person to act on one’s behalf. Some important points regarding a power of attorney include signatures of the principal party, two adult witnesses, and the notary public. It may be used immediately. A power of attorney does not need to be filed in court except for real estate transactions. The power of attorney is in effect until revoked by the principal, participant’s death, or revoked by the court. A power of attorney may have more than one agent – all agents must concur when making decisions. There are several types of power of attorney.
A health care surrogate is any competent adult expressly designated in writing by a patient to make health care decisions on his or her behalf when incapacitated. This surrogate has no authority to act until the primary care physician determines that the principal lacks the capacity to make informed health care decisions. A proxy is a competent adult, who has not been expressly designated to make health care decisions for an incapacitated individual but who is authorized to make health care decisions. A health care proxy is appointed by the hospital when there is no power of attorney or surrogate, and health care decisions need to be made. Potential representatives for an incapacitated patient may include:
Patients have the right to refuse treatment. They also have the right to be part of research studies or educational activities. Health and Human Services (HHS) regulation 45 CFR part 46 requires that investigators obtain ‘legally effective informed’ consent from participants who want to take part in human research studies. This informed consent process has three factors3:
1. Disclosure of all required information to potential research candidates, so that they can make an informed decision.
2. Ensuring that a candidate fully and accurately understands the information provided.
3. Safeguarding the complete voluntary nature of the decision.
If a patient refuses experimental treatment, this should not have any effect on his/her regular care. If the patient wants to be part of a research study, he/she must sign a written consent that explains that the proposed treatment is experimental. Consent form for participation in experimental treatment must include the nature of experimental treatment, procedures involved, risks and benefits, other available options, and confirmation of interrupted patient care.
Patients have the right to choose about organ donation. They must give informed consent if they want to donate their organs. If the patient is unable to give informed consent, the representative of the patient may make this decision.
Patients have the right to considerate, respectful, nondiscriminatory, and compassionate care from doctors, health plan representatives, and other health care providers. Respect means valuing the patients’ needs, desires, feelings, and ideas. Treat patients with common courtesy. For example, knock and wait before entering a patient’s room; respond politely to patients; listen to patients; and remain compassionate. All patients have the right to fair and equal health care services regardless of:
Patients have the right to safety and security. They have the right to a choice of health care providers that is sufficient to provide him/her with access to appropriate, high-quality care. All caregivers must do their part to ensure a safe environment of care for patients. All employees are responsible for knowing facility policies regarding environmental safety, infection control and security. JCAHO has been concerned about patient safety over the past few years to issue its Patient Safety Goals.
All patients should be screened for abuse. Facilities must have procedures for identifying, reporting and treating victims of abuse. They have the right to expect access to protective services in the case of abuse. Sometimes patients need to be kept safe from themselves and restraints are needed. The decision to use restraints is a medical decision. Restraints must never be used for discipline or convenience. When a patient must be restrained, it is important to protect the patient’s rights, safety, comfort, and dignity.
Patients have the right to reasonable visual and auditory privacy and confidentiality. A private place should be available for case discussion, consultation, examination, and treatment. The patient has the right to review and receive copies of their own medical record and request that the physician amend the record if it is not accurate, relevant or complete. The medical records are shared only with clinicians who are directly involved in the patient’s case, regulatory personnel who are considering a facility’s quality of care, and other people who have a legal or regulatory right to see the records. Protected health care information should not be shared with anyone else. Only authorized employees should have access to medical record storage facilities. The patient should receive an accounting of disclosures of personal health information. Patients may not be allowed to see certain information only if that information could harm the patient or someone else, or the information is being inspected by an oversight committee.
HIPAA – Health Insurance Portability and Accountability Act – privacy rule is a federal regulation. The rule sets standards for patient privacy and confidentiality. It also sets severe civil and criminal penalties for people who violate a patient’s privacy. To comply with HIPAA-protected patient information must only be shared with people who are directly involved in the patient care. The patient’s case must only be discussed with people who are directly involved in the case. Special attention should be taken when talking in public areas such as elevators, restrooms, hallways, cafeteria, etc. No aspect of patient care should ever be discussed in public areas. Patient charts should not be left out where they might be seen or accessed by unauthorized persons. Since many facilities are now using electronic patient records, clinicians need to be aware of facility policies for ‘locking’ their computers whenever they are not in use. It is important to observe surroundings when discussing patient care.
The patient has the right to a fair, fast, and objective review of any complaint that they have against the health plan, doctors, hospitals, or other healthcare personnel, including complaints about wait times, operating hours, the conduct of healthcare personnel and the adequacy of health care facilities. Many facilities have a Patient Care Representative to deal specifically with complaints or grievances. Many patient complaints can be addressed quickly. For example, if a patient complains about getting the wrong items on her lunch tray, make sure she gets the right items next time. The sooner the issue is resolved at the facility level, the better the patient compliance and satisfaction with health care provided. The patient may need to have access to the ethics committee for issues regarding his/her care. They should expect that issues related to end-of-life care be treated with respect and sensitivity. The patient should be able to examine and receive an explanation of his/her bill regardless of the source of payment.
More than 50% of patients sue because of miscommunications, anger, and lack of information between physicians, hospital staff, and patients/families. Grievance management is everyone’s responsibility. Handling grievances effectively from the start benefits everyone involved, and it helps keep small grievances from becoming big ones and reduce the risk of liability. When complaints cannot be resolved quickly and easily, patients have the right to file a grievance. A grievance is a formal written or verbal complaint. If a patient wants to file a grievance, the health care provider must:
Health care facilities must review, investigate, and resolve all grievances within a reasonable period. If the grievance has to do with the patient’s safety, it should be reviewed immediately. Examples include grievances about abuse or neglect. The grievance process is complete once the facility issues the patient a written report. This report should explain: how the facility investigated the grievance and the facility’s decision about the grievance.
Patients and insurance companies often disagree about the need for emergency care. For example, an individual has severe chest pains and goes to the Emergency Department because they think they are having a heart attack. Tests show that the problem is heartburn and the managed care plan refuses to cover the cost of the ER service. They argue that they do not have to pay for emergency services when an event was not life threatening. In the past, this type of conflict has led health care facilities to reject patients, refuse to treat patients and to transfer patients to other hospitals. Now, insurance companies must use a standard definition for the need for ER services. This definition uses the idea of a prudent layperson. Under this definition, a person has a need for ER services if he or she has signs or symptoms that a reasonable non-medical person would consider an emergency.
Congress passed the prudent layperson definition of emergency for Medicare and Medicaid in 1997. The prudent layperson definition appears in the Consumer Bill of Rights and Responsibilities:
Consumers have the right to access emergency health care services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity …that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing the consumer’s health in serious jeopardy, serious impairment to bodily functions or serious dysfunction of any bodily organ or part
If the patient has severe pain, an injury, or sudden illness that convinces him/her that their health is in serious jeopardy, they have the right to receive screening and stabilization emergency services whenever and wherever needed without prior authorization or financial penalty. The patient has the right to request transferal to another institution providing it is medically permissible and that the other facility will accept the transfer.
Another tool for protecting the right to emergency medical treatment is the Emergency Medical Treatment and Active Labor Act (EMTALA), which helps prevent patient dumping. Therefore, it is often called the anti-dumping law. EMTALA passed as part of the Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA). Consider this scenario: A patient goes to the emergency room and asks for medical service. Under EMTALA, the hospital must screen this patient. Screening must be complete enough to find out whether the patient has an emergency medical condition. The medical screening exam must be performed by a physician or qualified individual who is designated by the facility to provide medical screening exam. It must be clearly stated that a triage exam does not constitute a medical screening exam. If the patient does not have an emergency condition, the hospital has no further obligation under EMTALA. If the patient does have an emergency condition, the hospital must provide stabilizing treatment. This treatment must be provided without considering the patient’s ability to pay. Before the patient is stabilized, the hospital may transfer the patient ONLY if another facility is better equipped to treat the patient. The hospital may not transfer an unstable patient for economic reasons.
Patients have the right to question their bills. They have the right to request and receive a detailed explanation of every item on a bill.
As well as patient right, the patient should be informed of his responsibilities. Patient responsibilities typically include:
Patients (and as applicable – parents, guardians, foster parents, or other legal representatives) have the right to:
The family consists of those individuals responsible for the physical and emotional care of the child on a continuous basis regardless of whether they are related. Parents and families have the responsibility for:
Insurance companies often leave patients without coverage when they need it the most, causing them to put off needed care, compromising their health and driving up the cost of care when they get it. Too often, insurance companies put insurance company bureaucrats between you and your doctor.
On June 22, 2010, President Obama announced new interim final regulations, the Patient’s Bill of Rights, that include a set of protections that apply to health coverage starting on or after September 23, 2010, six months after the enactment of the Affordable Care Act.
The Affordable Care Act cracks down on the some of the most egregious practices of the insurance industry while providing the stability and the flexibility that families and businesses need to make the choices that work best for them.
The Departments of Health and Human Services, Labor and Treasury collaborated on the Patient’s Bill of Rights – which will create an important foundation of patients’ rights in the private health insurance market that puts Americans in charge of their own health.
The following health insurance Patient's Bill of Rights has embedded website shortcuts for more information.4, pg.1
In addition, the Affordable Care Act will achieve greater cost savings by 4:
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2. Parnell, TA. Health Literacy in Nursing. New York, NY. Springer Publishing Company; 2015.
3. HHS.gov Health Care. Informed Consent FAQs. (Visit Source). Accessed January 17th 2017.
4. Healthcare.gov. The Healthcare Law and You. (Visit Source). Published February 6th 2012
American College of Emergency Physicians, 2012. EMTALA. Retrieved 10/13/12 from (Visit Source).
Advisory Commission on Consumer Protection and Quality in Health Care Industry. Donna Shalala, Secretary of the Department of Health and Human Services, and Alexis Herman, Secretary of the Department of Labor. Quality First: Better Health Care for All Americans March 1998.
Centers for Medicare and Medicaid Services. 2/27/12. Health Insurance Reform for Consumers. Retrieved 10/13/12 from (Visit Source).
Consumer Bill of Rights and Responsibilities; Conditions of Participation – Centers for Medicaid and Medicare Services. 1999.
Federal Register /Vol. 75, No. 223 / Friday, November 19, 2010 /Rules and Regulations. 2010. Retrieved 10/1/112 from (Visit Source).