‚Äč‚ÄčAMERICAN PATIENT RIGHTS ASSOCIATION 

     SERVE - INFORM - EMPOWER 
FIGHTING FOR SAFE AND FAIR HEALTH CARE

Patient Rights Definition and Overview

By Charles Patrick Davis, MD, PhD   Emedicinehealth.com

Patient rights are those basic rules of conduct between patients and medical caregivers as well as the institutions and people that support them. A patient is anyone who has requested to be evaluated by or who is being evaluated by any healthcare professional. Medical caregivers include hospitals, healthcare personnel, as well as insurance agencies or any payors of medical-related costs. This is a broad definition, but there are other slightly more specific definitions. For example, a legal definition is as follows; patient rights is a general statement adopted by most healthcare professionals, covering such matters as access to care, patient dignity, confidentiality, and consent to treatment.

No matter what definition is used, most patients and doctors are finding that many of the details of patient rights have changed and are continuing to change over time. This article is designed to give the reader a basic introduction to patient rights.

Often, people do not realize their specific rights at the time of their care because those rights are either not clearly defined or included in a bundle of papers that patients need to sign during registration. Some basic rights are that all patients that seek care at an emergency department have the right to a screening exam and patients that cannot afford to pay are not turned away. The details of these rights are detailed in the Emergency Medical Treatment and Active Labor Act (EMTALA) laws in the U.S. In addition, many people think that patient rights are only applicable between themselves and their doctor. This is not the situation; as stated in the first definition, patient rights can be extensive and exist between many people and institutions. Most notably, they can exist between patients, any medical caregiver, hospitals, laboratories, insurers and even secretarial help and housekeepers that may have access to patients or their medical records.

It is not possible in this article to list all of patient's rights. However, most written rights that doctors and hospital personnel have patients read (and sign) are abbreviated statements that are summaries of all or parts of the American Medical Association (AMA) Code of Medical Ethics. Many of these patient rights have been written into state or federal laws and if violated, may result in fines or even prison time.

As stated above, the American Medical Association (AMA) outlines fundamental elements of the doctor-patient relationship in their Code of Medical Ethics. According to the AMA, physicians should also serve as advocates for patients and promote the basic patient rights.

Communication

Open and honest communication is an integral part of the doctor-patient relationship. The AMA's Code of Medical Ethics clearly states that it is a fundamental ethical requirement that a physician should at all times deal honestly and openly with patients. Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their conditions. Situations occasionally occur in which a patient suffers significant medical complications that may have resulted from the physician's mistake or judgment. In these situations, the physician is ethically required to inform the patient of all the facts necessary to ensure understanding of what has occurred. Only through full disclosure is a patient able to make informed decisions regarding future medical care.

Past patient surveys have found that virtually all patients desired some acknowledgment of even minor errors. For both moderate and severe mistakes, patients were significantly more likely to consider legal action if the physician did not disclose the error. Findings such as these reinforce the importance of open communication between physician and patient.

Informed Consent

Part of communication in medicine involves informed consent for treatment and procedures. This is considered a basic patient right. Informed consent involves the patient's understanding of the following:

  •     What the doctor is proposing to do
  •     Whether the doctor's proposal is a minor procedure or major surgery
  •     The nature and purpose of the treatment
  •     Intended effects versus possible side effects
  •     The risks and anticipated benefits involved
  •     All reasonable alternatives including risks and possible benefits.

Closely associated with informed consent, voluntary consent means that the patient understands these concepts; the patient rights include the following:
  •     Freedom from force, fraud, deceit, duress, overreaching or other ulterior form of constraint or coercion
  •     The right to refuse or withdraw without influencing the patient's future healthcare
  •     The right to ask questions and to negotiate aspects of treatment

A patient must be competent in order to give voluntary and informed consent. Thus, competent consent involves the ability to make and stand by an informed, freely made decision. In clinical practice, competence is often equated with capacity. Decision-making capacity refers to a patient's ability to make decisions about accepting healthcare recommendations. To have adequate decision-making capacity, a patient must understand the options, the consequences associated with the various options, and the costs and benefits of these consequences by relating them to personal values and priorities.
Some factors may make a patient incapable of providing competent consent either temporarily or permanently. Examples include the following:
  •     Mental illness or mental retardation
  •     Alcohol or drug intoxication
  •     Altered mental status
  •     Brain injury
  •     Being too young to legally make decisions concerning health care

Patients that are judged incompetent (often determined by two independent physicians or in some instances, by a legal decree) can have others legally permitted to make medical decisions for the patient.

Confidentiality


Law and ethics state that the doctor-patient interaction should remain confidential. The physician should never reveal confidential information unless the patient wants this information disclosed to others, or unless required to do so by law. If the release of information is warranted, information should be released in the form of an official signed document.

Confidentiality is subject to certain exceptions because of legal, ethical, and social considerations. When patients are at risk of physically harming another person, or if those patients are at risk of harming themselves, the physician has the legal obligation to protect the potential victim and notify law enforcement authorities.

All U.S. states and Canadian provinces require all cases of child abuse to be reported to the district attorney's office and/or child protective services. This includes suspected and confirmed cases of child abuse. Failure of health care personnel to report child abuse and neglect may result in criminal prosecution under the Child Abuse and Prevention Act of 1974. Failure to report child abuse may also result in civil prosecution for malpractice if the child suffers injury or death because the abuse was not reported. This is another special case in which patient confidentiality does not exist. Doctors that reasonably suspect child abuse and report it are not liable if Child Protective Services ultimately find there was no abuse. New changes also extends this law to elderly patients.

In addition to child and elderly abuse, certain aspects relating to confidentiality does not apply to cases involving some specific communicable diseases, gunshot wounds, and knife wounds that are related to illegal or criminal activity.
The subject of minors creates a special situation regarding confidentiality. The laws vary from state to state. Most states regard a person younger than 18 years as a minor.

An exception is made for emancipated minors, who are considered self-reliant because, for example, they are married or have children themselves. Emancipated minors are usually regarded as adults in reference to their medical care.
Minors who live with their parents but are self-reliant and independent are considered mature minors. In some states, a mature minor may be considered an adult regarding medical treatment. In various states and depending on the situation, minors can consent to treatment for contraception, drug and alcohol problems, psychiatric conditions, pregnancy, abortion, and sexually transmitted diseases (STDs, venereal diseases) without the knowledge of their parents. It is best for doctors and patients to know the laws that pertain to the State where the medical situation is to be assessed and treated.

The Right to Healthcare


Most people agree that everyone deserves the basic right to healthcare, but how far that right goes has been the center of America's healthcare debate; even with the Supreme Court upholding the current new federal healthcare laws, the debate continues, even to the point that the new laws may undergo repeal. Within the existing social structure, inequities in access to healthcare are widespread. Because of numerous inequities in healthcare that often involve such factors as race, socioeconomic status, and gender, politicians have tried for many years to change the healthcare system and are likely to continue to intervene and change these "patient rights."

America's health care system consists of a patchwork of healthcare programs and insurance that includes private health insurance, HMOs, Medicaid, and Medicare, among others. However, more than 49 million Americans are uninsured according to 2010 census data, and the government has been forced to pass various laws in order for America's health care system to provide more equal care.

An example of such a law is the Consolidated Omnibus Budget Reconciliation Act (COBRA). The COBRA regulations are federal legislation that mandates an evaluation of patients who seek medical attention at emergency facilities. If an emergency care institution refuses to provide care, the institution and health care providers are held responsible and liable. These regulations prevent health care institutions from refusing needed care to people without money or health insurance.

Together, the COBRA laws and the newer Emergency Medical Treatment and Active Labor Act (EMTALA) refer to federal laws related to patient screening and transfer. They require all emergency departments and Medicare-participating hospitals to do the following:
  •      Perform an appropriate medical screening examination by a qualified provider to determine whether an emergency condition exists
  •      Provide further examination and treatment to stabilize the patient, and if necessary and appropriate, to arrange a transfer
  •      Consider patients in labor unstable for transfer, under special conditions (see below).

EMTALA requires that all emergency departments and Medicare-participating hospitals to screen anyone who is in active labor or is seeking emergency care. If such a screening reveals the presence of an emergency medical condition - such as severe pain, serious threat to life or limb, or active labor - the hospital is required to perform stabilizing treatment to the best of its capabilities.

In order to provide continuing health insurance for the recently unemployed, COBRA provisions also permit continuation of coverage through the workplace. Recently, many federal and civil lawsuits have been filed and both won and lost against HMOs for failing to provide needed care because of the drive to reduce health care costs. The outcome of such lawsuits is sometimes unclear, but the quality of provided care is on the minds of all who obtain health care.

Abandonment


The doctor has the duty to continue a patient's healthcare after consenting to provide medical care unless the patient no longer requires treatment for the illness. The doctor must notify the patient and transfer care to another acceptable doctor if planning to withdraw care. The doctors may be charged with negligent abandonment for ending the relationship with the patient without appropriate referral, transfer, or discharge. Although doctors are free to choose which patients they will treat, doctors should offer optimal care for patients who need emergency first-aid treatment.

Right to Refuse Care - Adults, Parents, and Children


Along with the right to adequate and appropriate healthcare, competent adult patients have the right to refuse health care (it is wise to document that the patient clearly understands the risks and benefits of their decision), but exceptions do occur.
Patients with an altered mental status because of alcohol, drugs, brain injury, or medical or psychiatric illness may not be able to make a competent decision; then the patient may need to have a person legally appointed to make medical decisions.
Although laws have established the right of an adult to refuse life-sustaining treatment, they do not allow parents or guardians to deny children necessary medical care.

In the case of Prince v. Massachusetts, the U.S. Supreme Court ruled: "The right to practice religion freely does not include the liberty to expose the community or child to communicable disease, or the latter to ill health or death. Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion." Legal advice and Child Protective Services should be sought and informed about these occurrences to avoid counter charges of assault and battery by the parents or child.

Legal Principles in Medicine


One way to look at patients' rights is to view the legal implications that occur when patients' rights are violated. Torts, which are defined as civil injustices recognized as grounds for a lawsuit, are often involved in medical injury claims and malpractice claims. Negligence is the basis for the majority of claims involving medical issues in the United States. A civil negligence claim involves a plaintiff and a defendant.

In order to succeed in court, the plaintiff (the patient, in this case) must prove four elements in medical malpractice: (1) a preexisting duty, (2) a breach of duty, (3) damage, and (4) immediate cause.

"Duty to treat" implies that the licensed physician agrees to practice medicine and accepts a patient for the purposes of medical treatment. In doing so, a physician-patient relationship is established and a contract to provide care exists. The physician owes each patient the duty to possess and to bring to bear on the patient's behalf that degree of knowledge, skill, and care usually exercised by reasonable and careful practitioners under similar circumstances, given the current medical knowledge and the available resources.

Once a duty to treat has been established, the plaintiff must prove that a breach of duty has occurred. When a health professional fails to comply with minimum standards of his or her specialty, a breach of duty may exist. The physician is expected to act professionally according to the standard of care expected of the similarly trained, reasonable, careful professional under the same or similar circumstances. Unfortunately, the "standard of care" changes over time and frequently is not even clearly defined in many instances.

After the plaintiff proves that a duty to treat exists and that a breach of duty occurred, he or she next has to prove that damage has occurred. Damage is demonstrated through personal loss, injury, or deterioration because of the physician's negligence. Without damage, negligence cannot be established. Damages may include physical and mental disability, pain and suffering, loss of income, present and future medical expenses and death.

Causation is the last aspect of negligence. If a duty to treat exists, and the standard of care was not met, the plaintiff must prove that the defendant's breach of duty reasonably caused the plaintiff's damage.

In order for the plaintiff to prove negligence of the physician, all four of these components must exist at least in the opinion of a judge or jury that decides the outcome.

Medical Research and Patients' Rights


The issue of patient rights in medical research has developed over the years because of unethical practices that have occurred in the past. The Nuremberg Code was formulated in 1947 because of the trial of Nazi physicians who had experimented on unwilling subjects. The Code states that "the voluntary consent of the human subject is absolutely essential."
In 1964, the Declaration of Helsinki softened the stipulations of the Nuremberg Code by allowing the legal guardians of incompetent persons to provide consent on their behalf, at least for "therapeutic" research.

After the exploitation of subjects in the Tuskegee study of syphilis, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was created in 1974. The Commission discussed the problem of using vulnerable groups as research subjects. An article in the Journal of the American Medical Association proposed seven requirements that provide a framework for evaluating the ethics of clinical research studies that is generally adopted by medical researchers:
  •     Value: Enhancements of health or knowledge must be derived from the research.
  •     Scientific validity: The research must be methodologically rigorous.
  •     Fair subject selection: Scientific objectives, not vulnerability or privilege, and the potential for and distribution of risks and benefits, should   determine communities selected as study sites and the inclusion criteria for individual subjects.
  •     Favorable risk-benefit ratio: Within the context of standard clinical practice and the research protocol, risks must be minimized, potential benefits enhanced, and the potential benefits to individuals and knowledge gained for society must outweigh the risks.
  •     Independent review: Unaffiliated individuals must review the research and approve, amend, or terminate it.
  •     Informed consent: Individuals should be informed about the research and provide their voluntary consent.
  •     Respect for enrolled subjects: Subjects should have their privacy protected, the opportunity to withdraw, and their   well-being monitored.
  •    Clinical trial: As in medical treatment, patients have the right to refuse to participate in clinical research, and this should not affect their care. Enrollment in a clinical trial also should not prevent a patient from obtaining timely and appropriate medical care.

The institutional review board (IRB) is the essential element of the current regulatory system for research. The system relies on a local, institution-based review of proposed research. When a study involves human experimentation, almost every major funding agency and academic institution in the United States and Europe requires that the study be approved by a formally organized IRB.

The purpose of the IRB is to review studies and protect patients from the potential harms of research, especially patients who may not be competent to consent to participate in research. In the past, minority groups have been subject to exploitation by medical research. Research using minority participation involves issues of cultural and linguistic differences and the potential for increased risk of coercion and exploitation.

In summary, patient rights are continually evolving and are linked to governmental agencies and their regulations. Failure to respect these patient rights may have severe penalties imposed on those individuals, businesses, and ancillary health agencies that violate patient rights. However, if patients have rights, they should remember that patient rights also come with responsibilities. For example, patients need to be responsible to listen and act on the advice of their doctor(s), to tell the truth when asked questions (for example, "Do you use any illegal drugs," "How many alcoholic beverages do you drink per day" and many others). When there is mutual respect and honesty between healthcare professionals and patients, there is seldom any problems with patient rights.


REFERENCES:
American Medical Association. Code of Medical Ethics: Current Opinions with Annotations. 2012-2013, 2012, 1-568 pp.
HealthCare.gov. Patient's Bill of Rights.

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WHAT ARE YOUR RIGHTS AS A PATIENT 

by APRA

Americans have few laws to protect them when it  comes to their healthcare. The laws that do exist are essentially toothless, generally ignored by the medical industry and unenforced.

In 2001 a Patient's Bill of Rights which would have provided comprehensive protection for patients covered by health insurance was considered by Congress but defeated by the health insurance industry, which goes to great lengths to keep its campaigns hidden from the public. The American Hospital Association (AHA) adopted a Patient's Bill of Rights in 1973 and further revised it in 1992 however these are only guidelines and are not legally enforceable.

The HIPAA law was created to safeguard and ensure that patient's medical records and information are kept private, but since 2002 when a change in the law occurred it does not do so. And healthcare providers use it as a convenient excuse to refuse to release information whenever there is any inquiry into treatment that they have provided, even on occasion to the individual who has received treatment, which is illegal. 

With the exception of Medicare or Medicaid fraud, which the US Justice Department now vigorously prosecutes, patients are left unprotected when it comes to any issue regarding their personal health and medical services received. When a problem occurs, in general their only recourse is a expensive lawsuit, which is not feasible for most people unless malpractice has occurred and a lawyer agrees to take the case on contingency (only 2% of cases).  

APRA believes that consumers should have viable, enforceable legal rights protecting them with respect to the medical services they receive, just as they have legal rights protecting them as consumers of other types of goods and services. APRA has developed a Patient Medical Bill of Rights which would provide greater protection for patients and, if implemented, could potentially save hundreds of thousands of lives each year and billions of dollars in healthcare costs.


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