PATIENTS' RIGHTS

The legal interests of persons who submit to medical treatment.

For many years, common medical practice meant that physicians made decisions for their patients. This paternalistic view has gradually been supplanted by one promoting patient autonomy, whereby patients and doctors share the decision-making responsibility. Consequently doctor-patient relationships are very different now than they were just a few decades ago. However, conflicts still abound as the medical community and those it serves struggle to define their respective roles.

Consent

Consent, particularly informed consent, is the cornerstone of patients' rights. Consent is based on the inviolability of one's person. It means that doctors do not have the right to touch or treat a patient without that patient's approval because the patient is the one who must live with the consequences and deal with any dis-comfort caused by treatment. A doctor can be held liable for committing a battery if the doctor touches the patient without first obtaining the patient's consent.

The shift in doctor-patient relationships seems inevitable in hindsight. In one early consent case, a doctor told a woman he would only be repairing some cervical and rectal tears; instead he performed a hysterectomy. In another case, a patient permitted her doctors to examine her under anesthesia but insisted that they not operate; the doctors removed a fibroid tumor during the procedure. In yet another case, a doctor assured a man that a proposed operation was simple and essentially without risk; the patient's left hand was paralyzed as a result of the surgery.

Consent must be voluntary, competent, and informed. Voluntary means that, when the patient gives consent, he or she is free from extreme duress and is not intoxicated or under the influence of medication and that the doctor has not coerced the patient into giving consent.

The law presumes that an adult is competent, but competency may be an issue in numerous instances. Competence is typically only challenged when a patient disagrees with a doctor's recommended treatment or refuses treatment altogether. If an individual understands the information presented regarding treatment, she or he is competent to consent to or refuse treatment.

Consent can be given verbally, in writing, or by one's actions. For example, a person has consented to a vaccination if she stands in line with others who are receiving vaccinations, observes the procedure, and then presents her arm to a healthcare provider. Consent is inferred in cases of emergency or unanticipated circumstances. For example, if unforeseen serious or life-threatening circumstances develop during surgery for which consent has been given, consent is inferred to allow doctors to take immediate further action to prevent serious injury or death. Consent is also inferred when an adult or child is found unconscious, or when an emergency otherwise necessitates immediate treatment to prevent serious harm or death.

Consent is not valid if the patient does not understand its meaning or if a patient has been misled. Children typically may not give consent; instead a parent or guardian must consent to medical treatment. Competency issues may arise with mentally ill individuals or those who have diminished mental capacity due to retardation or other problems. However, the fact that someone suffers from a mental illness or diminished mental capacity does not mean that the individual is incompetent. Depending on the type and severity of the disability, the patient may still have the ability to understand a proposed course of treatment. For example, in recent years most jurisdictions have recognized the right of hospitalized mental patients to refuse medication under certain circumstances. Numerous courts have ruled that a mental patient may have the right to refuse antipsychotic drugs, which can produce disturbing side effects.

If a patient is incompetent, technically only a legally appointed guardian can make treatment decisions. Commonly, however, physicians defer to family members on an informal basis, thereby avoiding a lengthy and expensive competency hearing. Consent by a family member demonstrates that the doctor consulted someone who knows the patient well and is likely to be concerned about the patient's well-being. This will probably be sufficient to dissuade a patient from suing for failure to obtain consent should the patient recover.

Legal, moral, and ethical questions arise in competency cases involving medical procedures not primarily for the patient's benefit. These cases typically arise in the context of organ donation from one sibling to another. Many of these cases are approved in the lower courts; the decisions frequently turn on an examination of the relationship between the donor and recipient. If the donor and recipient have a relationship that the donor is aware of, actively participates in, and benefits from, courts generally conclude that the benefits of continuing the relationship outweigh the risks and discomforts of the procedure. For example, one court granted permission for a kidney transplant from a developmentally disabled patient into his brother because the developmentally disabled boy was very dependent on the brother. In another case, a court approved a seven-year-old girl's donation of a kidney to her identical twin sister after experts and family testified to the close bond between the two. Conversely, a mother successfully fought to prevent testing of her three-and-a-half-year-old twins for a possible bone marrow transplant for a half brother because the children had only met the boy twice and were unaware that he was their brother.

Married or emancipated minors, including those in the armed services, are capable of giving their own consent. Emancipated means that the minor is self-supporting and lives independently of parents and parental control. In addition, under a theory known as the mature minor doctrine, certain minors may consent to treatment without first obtaining parental consent. If the minor is capable of understanding the nature, extent, and consequences of medical treatment, he or she may consent to medical care. Such situations typically involve older minors and treatments for the benefit of the minor (i.e., not organ transplant donors or blood donors) and usually involve relatively low-risk procedures. In recent years, however, some minors have sought the right to make life- or-death decisions. In 1989, a state court first recognized that a minor could make such a grave decision. A 17-year-old leukemia patient refused life-saving blood transfusions based on a deeply held, family-shared religious conviction. A psychologist testified that the girl had the maturity of a 22-year-old. Ironically, the young woman won her right to refuse treatment but was alive and healthy when the case was finally decided. She had been transfused before the slow judicial process needed to decide such a difficult question led to a ruling in her favor.

Some state statutes specifically provide that minors may give consent in certain highly charged situations, such as cases of venereal disease, pregnancy, and drug or alcohol abuse. A minor may also overrule parental consent in certain situations. In one case, a mother gave consent for an abortion for her 16-year-old unemancipated daughter, but the girl disagreed. A court upheld the daughter's right to withhold consent.

Courts often reach divergent outcomes when deciding whether to interfere with a parent's refusal to consent to a non-life-threatening procedure. One court refused to override a father's denial of consent for surgery to repair his son's harelip and cleft palate. But a different court permitted an operation on a boy suffering from a severe facial deformity even though his mother objected on religious grounds to the accompanying blood transfusion. In another case, a child was ordered to undergo medical treatments after the parents unsuccessfully treated the child's severe burns with herbal remedies.

Courts rarely hesitate to step in where a child's life is in danger. To deny a child a beneficial, life-sustaining treatment constitutes child neglect, and states have a duty to protect children from neglect. One case involved a mother who testified that she did not believe that her child was HIV positive, despite medical evidence to the contrary. The court ordered treatment, including AZT, for the child. Many other cases involve parents who want to treat a serious illness with nontraditional methods or whose religious beliefs forbid blood transfusions. Cases involving religious beliefs raise difficult questions under the First Amendment's Free Excise of Religion Clause, common law, statutory rights of a parent in raising a child, and the state's traditional interest in protecting those unable to protect themselves.

When a child's life is in danger and parental consent is withheld, a hospital seeks a court-appointed guardian for the child. The guardian, often a hospital administrator, then consents to the treatment on behalf of the child. In an emergency case, a judge may make a decision over the telephone. In some cases, doctors may choose to act without judicial permission if time constraints do not allow enough time to reach a judge by telephone.

In 1982, a six-day-old infant with Down's syndrome died after a court approved a parental decision to withhold life-saving surgery. The child had a condition that made eating impossible. The baby was medicated but given no nourishment. The public furor over the Baby Doe case eventually helped spur the department of health and human services to create regulations delineating when treatment may be withheld from a disabled infant. Treatment may be withheld if an infant is chronically and irreversibly comatose, if such treatment would merely prolong dying or would otherwise be futile in terms of survival of the infant, or if such treatment would be virtually futile in terms of survival and the treatment would be inhumane under these circumstances.

Although courts overrule parental refusal to allow treatment in many instances, far less common are cases where a court overrides an otherwise competent adult's denial of consent. The cases where courts have compelled treatment of an adult usually fall into two categories: when the patient was so physically weak that the court ruled that the patient could not reflect and make a choice to consent or refuse; or when the patient had minor children, even though the patient was fully competent to refuse consent. The possible civil or criminal liability of a hospital might also factor into a decision. A court typically will not order a terminally ill patient to undergo treatments to prolong life.

Informed Consent

Simply consenting to treatment is not enough. A patient must give informed consent. In essence, informed consent means that before a doctor can treat or touch a patient, the patient must be given some basic information about what the doctor proposes to do. Informed consent has been called the most important legal doctrine in patients' rights.

State laws and court decisions vary regarding informed consent, but the trend is clearly toward more disclosure rather than less. Informed consent is required not only in life-or-death situations but also in clinic and outpatient settings as well. A healthcare provider must first present information regarding risks, alternatives, and success rates. The information must be presented in language the patient can understand and typically should include the following:

• A description of the recommended treatment or procedure;
• A description of the risks and benefits—particularly exploring the risk of serious bodily disability or death;
• A description of alternative treatments and the risks and benefits of alternatives;
• The probable results if no treatment is undertaken;
• The probability of success and a definition of what the doctor means by success;
• Length and challenges of recuperation; and
• Any other information generally provided to patients in this situation by other qualified physicians.

Only material risks must be disclosed. A material risk is one that might cause a reasonable patient to decide not to undergo a recommended treatment. The magnitude of the risk also factors into the definition of a material risk. For example, one would expect that a one in 10,000 risk of death would always be disclosed, but not a one in 10,000 risk of a two-hour headache.

Plastic surgery and vasectomies illustrate two areas where the probability of success and the meaning of success should be explicitly delineated. For example, a man successfully sued his doctor after the doctor assured him that a vasectomy would be 100 percent effective as birth control; the man's wife later became pregnant. Because the only purpose for having the procedure was complete sterilization, a careful explanation of probability of success was essential.

Occasionally, informed consent is not required. In an emergency situation where immediate treatment is needed to preserve a patient's health or life, a physician may be justified in failing to provide full and complete information to a patient. Moreover, where the risks are minor and well known to the average person, such as in drawing blood, a physician may dispense with full disclosure. In addition, some patients explicitly ask not to be informed of specific risks. In this situation, a doctor must only ascertain that the patient understands that there are unspecified risks of death and serious bodily disabilities; the doctor might ask the patient to sign a waiver of informed consent.

Finally, informed consent may be bypassed in rare cases in which a physician has objective evidence that informing a patient would render the patient unable to make a rational decision. Under these circumstances, a physician must disclose the information to another person designated by the patient.

Informed consent is rarely legally required to be in writing, but this does provide evidence that consent was in fact obtained. The more specific the consent, the less likely it will be construed against a doctor or a hospital in court. Conversely, blanket consent forms cover almost everything a doctor or hospital might do to a patient without mentioning anything specific and are easily construed against a doctor or hospital. However, blanket forms are frequently used upon admission to a hospital to provide proof of consent to noninvasive routine hospital procedures such as taking blood pressure. A consent form may not contain a clause waiving a patient's right to sue, unless state law provides for binding arbitration upon mutual agreement. Moreover, consent can be predicated upon a certain surgeon doing a surgery. It can also be withdrawn at any time, subject to practical limitations.

Right to Treatment

In an emergency situation, a patient has a right to treatment, regardless of ability to pay. If a situation is likely to cause death, serious injury, or disability if not attended to promptly, it is an emergency. Cardiac arrest, heavy bleeding, profound shock, severe head injuries, and acute psychotic states are some examples of emergencies. Less obvious situations can also be emergencies: broken bones, fever, and cuts requiring stitches may also require immediate treatment.

Both public and private hospitals have a duty to administer medical care to a person experiencing an emergency. If a hospital has emergency facilities, it is legally required to provide appropriate treatment to a person experiencing an emergency. If the hospital is unable to provide emergency services, it must provide a referral for appropriate treatment. Hospitals cannot refuse to treat prospective patients on the basis of race, religion, or national origin, or refuse to treat someone with HIV or AIDS.

In 1986, Congress passed the Emergency Medical Treatment and Active Labor Act (EMTALA) (42 U.S.C.A. § 1395dd), which established criteria for emergency services and criteria for safe transfer of patients between hospitals. This statute was designed to prevent "patient dumping," that is, transferring undesirable patients to another facility. The law applies to all hospitals receiving federal funds, such as medicare (almost all do). The law requires hospitals to provide a screening exam to determine if an emergency condition exists, provide stabilizing treatment to any emergency patient or to any woman in active labor before transfer, and continue treatment until a patient can be discharged or transferred without harm. It also delineates strict guidelines for the transfer of a patient who cannot be stabilized. A hospital that negligently or knowingly and willfully violates any of these provisions can be terminated or suspended from Medicare. The physician, the hospital, or both can also be penalized up to $50,000 for each knowing violation of the law.

One of the first cases brought under EMTALA involved a doctor who transferred a woman in active labor to a hospital 170 miles away. The woman delivered a healthy baby during the trip, but the doctor was fined $20,000 for the improper transfer of the woman. In addition to federal laws such as EMTALA, states may also impose by regulation or statute a duty on hospitals to administer emergency care.

There is no universal right to be admitted to a hospital in a nonemergency situation. In nonemergency cases, admission rights depend largely on the specific hospital, but basing admission on ability to pay is severely limited by statutes, regulations, and judicial decisions. For example, most hospitals obtained financial assistance from the federal government for construction; these hospitals are required to provide a reasonable volume of services to persons unable to pay. The amount of services to be provided is set by regulation, and the obligation continues for 20 years after construction is completed. Patients must be advised of the hospital's obligation under the law, or the hospital may be foreclosed from suing to collect on the bill. In addition, many states prohibit hospitals from denying admission based solely on inability to pay; some courts have made similar rulings against public hospitals based on hospital charters

and public policy reasons. Hospitals are also prohibited from requiring a deposit from a Medicare or medicaid patient.

Once a patient has been duly admitted to a hospital, she or he has a right to leave at any time, or the hospital could be liable for false imprisonment. This is so even if the patient has not paid the bill or if the patient wants to leave against all medical advice. In rare cases, such as contagious disease cases, public health authorities may have state statutory or regulatory authority to quarantine a patient. In addition, state laws governing involuntary commitment of the mentally ill may be used to prevent a person of unsound mind from leaving the hospital if a qualified psychiatrist determines that the person is a danger to himself or herself or to the lives of others.

A doctor familiar with a patient's condition determines when a patient is ready for discharge and signs a written order to that effect. If the patient disagrees with a decision to discharge, she or he has the right to demand a consultation with a different physician before the order is carried out. The decision to discharge must be based solely on the patient's medical condition and not on nonpayment of medical bills.

In the mid-1990s, concern over maternity patients being discharged just a few hours after giving birth prompted legislation at both the state and federal levels. In September 1996, President bill clinton signed a law ensuring a 48-hour hospital stay for a woman who gives birth vaginally and a 96-hour stay for a woman who has a caesarean section, unless the patient and the doctor agree to an earlier discharge. A number of state legislatures have passed similar laws as well.

With the rise of managed care and Health Maintenance Organizations (HMOs), patients faced new issues involving the right to treatment. HMOs may deny authorization for expensive or experimental treatments, or for treatments provided outside the network of approved physicians. HMOs contend that they must control costs and make decisions that benefit the largest number of members. In response, state legislatures have enacted HMO regulations that seek to give patients a process for appealing the denial of benefits. The HMOs have opposed these measures and have vigorously defended their denial of benefits in court.

In Moran v. Rush Prudential HMO, Inc., 536 U.S. 355, 122 S.Ct. 2151, 153 L.Ed.2d 375 (2002), the Supreme Court in a 5–4 decision upheld an Illinois law that required HMOs to provide independent review of disputes between the primary care physician and the HMO. The law mandated that the HMO must pay for services deemed medically necessary by the independent reviewer. Most importantly, the court ruled that the federal employee retirement income security act (ERISA) did not preempt the Illinois law. ERISA is an extremely complex and technical set of provisions that seek to protect employee benefit programs. The decision was significant because it empowered other states to enact similar laws that give patients more rights in obtaining treatment

Medical Experimentation

Medical progress and medical experimentation have always gone hand in hand, but patients' rights have sometimes been ignored in the process. Sometimes patients are completely unaware of the experimentation. Experimentation has also taken place in settings in which individuals may have extreme difficulty asserting their rights, such as in prisons, mental institutions, the military, and residences for the mentally disabled. Legitimate experimentation requires informed consent that may be withdrawn at any time.

Some of the more notorious and shameful instances of human experimentation in the United States in the twentieth century include a 1963 study in which terminally ill hospital patients were injected with live cancer cells to test their immune response; the tuskegee syphilis study, begun before world war ii and continuing for 40 years, in which effective treatment was withheld from poor black males suffering from syphilis so that medical personnel could study the natural course of the disease; and a study where developmentally disabled children were deliberately infected with hepatitis to test potential vaccines.

Failure to obtain informed consent can arise even when consent has ostensibly been obtained. The California Supreme Court ruled in 1990 that a physician must disclose preexisting research and potential economic interests that may affect the doctor's medical judgment (Moore v. Regents of the University of California, 51 Cal. 3d 120, 793 P. 2d 479). The case involved excision of a patient's cells pursuant to surgery and other procedures to which the patient had consented. The surgery itself was not experimental; the experimentation took place after the surgery and other procedures. The cells were used in medical research that proved lucrative to the doctor and medical center.

Patients in teaching hospitals are frequently asked to participate in research. Participants do not surrender legal rights simply by agreeing to cooperate and validly obtained consent cannot protect a researcher from negligence.

In hospitals, human experimentation is typically monitored by an institutional review board (IRB). Federal regulation requires IRBs in all hospitals receiving federal funding. These boards review proposed research before patients are asked to participate and approve written consent forms. IRBs are meant to ensure that risks are minimized, the risks are reasonable in relation to anticipated benefits, the selection of subjects is equitable, and informed consent is obtained and properly documented. Federal regulations denominate specific items that must be covered when obtaining informed consent in experimental cases. IRB approval never obligates a patient to participate in research.

Advance Medical Directives

Every state has enacted advance medical directive legislation, but the laws vary widely. Advance medical directives are documents that are made at a time when a person has full decision-making capabilities and are used to direct medical care in the future when this capacity is lost. Many statutes are narrowly drawn and specify that they apply only to illnesses when death is imminent rather than illnesses requiring long-term life support, such as in end-stage lung, heart, or kidney failure; multiple sclerosis; paraplegia; and persistent vegetative state.

Patients sometimes use living wills to direct future medical care. Most commonly, living wills specify steps a patient does not want taken in cases of life-threatening or debilitating illness, but they may also be used to specify that a patient wants aggressive resuscitation measures used. Studies have shown that living wills often are not honored, despite the fact that federal law requires all hospitals, nursing homes, and other Medicare and Medicaid providers to ask patients on admission whether they have executed an advance directive. Some of the reasons living wills are not honored are medical personnel's fear of liability, the patient's failure to communicate his or her wishes, or misunderstanding or mismanagement by hospital personnel.

Another way individuals attempt to direct medical care is through a durable power of attorney. A durable power of attorney, or proxy decision maker, is a written document wherein a person (the principal) designates another person to perform certain acts or make certain decisions on the principal's behalf. It is called durable because the power continues to be effective even after the principal becomes incompetent or it may only take effect after the principal becomes incompetent. As with a living will, such a document has little power to compel a doctor to follow a patient's desires, but in the very least it serves as valuable evidence of a person's wishes if the matter is brought into court. A durable power of attorney may be used by itself or in conjunction with a living will.

When advance medical directives function as intended and are honored by physicians, they free family members from making extremely difficult decisions. They may also protect physicians. Standard medical care typically requires that a doctor provide maximum care. In essence, a living will can change the standard of care upon which a physician will be judged and may protect a physician from legal or professional repercussions for withholding or withdrawing care.

Right to Die

A number of cases have addressed the right to refuse life-sustaining medical treatment. Broadly speaking, under certain circumstances a person may have a right to refuse life-sustaining medical treatment or to have life-sustaining treatment withdrawn. On the one side in these cases is the patient's interest in autonomy, privacy, and bodily integrity. This side must be balanced against the state's traditional interests in the preservation of life, prevention of suicide, protection of dependents, and the protection of the integrity of the medical profession.

In in re quinlan, 355 A.2d 647 (1976), the New Jersey Supreme Court permitted withdrawal of life-support measures for a woman in a persistent vegetative state, although her condition was stable and her life expectancy stretched years into the future. Many of the emotional issues the country struggles with in the early 2000s were either a direct result of or were influenced by this case, including living wills and other advance medical directives, the right to refuse unwanted treatment, and physician-assisted suicide.

The first U.S. Supreme Court decision addressing the difficult question regarding the removal of life support was Cruzan v. Director, Missouri Department of Health, 497 U.S. 261, 110 S. Ct. 2841, 111 L. Ed. 2d 224 (1990). Cruzan involved a young woman rendered permanently comatose after a car accident. Her parents petitioned to have her feeding tube removed. The Supreme Court ruled that the evidence needed to be clear and convincing that the young woman had explicitly authorized the termination of treatment prior to becoming incompetent. The Court ruled that the evidence had not been clear and convincing, but upon remand to the state court the family presented new testimony that was deemed clear and convincing. The young woman died 12 days after her feeding tube was removed.

The Supreme Court decided two right-todie cases in 1997, Quill v. Vacco, 521 U.S. 793, 117 S.Ct. 2293, 138 L.Ed.2d 834 (1997), and washington v. glucksberg, 521 U.S. 702, 117 S.Ct. 2258, 138 L.Ed.2d 772 (1997). In Glucksberg, the appellate courts in New York and Washington had struck down laws banning physician-assisted suicide as violations of equal protection and due process, respectively. The Supreme Court reversed both decisions, finding no constitutional right to assisted suicide, thus upholding states' power to ban the practice.

Though both cases were considered together, Glucksberg was the key right-to-die decision. Dr. Harold Glucksberg and three other physicians sought a declaratory judgment that the state of Washington's law prohibiting assisted suicide was unconstitutional as applied to terminally ill, mentally competent adults. The Supreme Court voted unanimously to sustain the Washington law, though five of the nine justices filed concurring opinions in Quill and Glucksberg. Chief Justice william rehnquist, writing for the Court, based much of his analysis on historical and legal traditions. The fact that most western democracies make it a crime to assist a suicide was backed up by over 700 years of Anglo-American common-law tradition that has punished or disapproved of suicide or assisting suicide. This "deeply rooted"opposition to assisted suicides had been reaffirmed by the Washington legislature in 1975 when the current prohibition had been enacted and again in 1979 when it passed a Natural Death Act. This law declared that the refusal or withdrawal of treatment did not constitute suicide, but it explicitly stated that the act did not authorize euthanasia.

The doctors had argued that the law violated the substantive due process component of the fourteenth amendment. Unlike procedural due process which focuses on whether the right steps have been taken in a legal matter, substantive due process looks to fundamental rights that are implicit in the amendment. For the Court to recognize a fundamental liberty, the liberty must be deeply rooted in U.S. history and it must be carefully described. The Court rejected this argument because U.S. history has not recognized a "right to die" and therefore it is not a fundamental right. Employing the rational basis test of constitutional review, the Court concluded that the law was "rationally related to legitimate government interests" and thus passed constitutional muster.

Privacy and Confidentiality

Confidentiality between a doctor and patient means that a doctor has the express or implied duty not to disclose information received from the patient to anyone not directly involved with the patient's care. Confidentiality is important so that healthcare providers have knowledge of all facts, regardless of how personal or embarrassing, that might have a bearing on a patient's health. Patients must feel that it is safe to communicate such information freely. Although this theory drives doctor-patient confidentiality, the reality is that many people have routine and legitimate access to a patient's records. A hospital patient might have several doctors, nurses, and support personnel on every shift, and a patient might also see a therapist, nutritionist, or pharmacologist, to name a few.

The law requires some confidential information to be reported to authorities. For example, birth and death certificates must be filed; child abuse cases must be reported; and infectious, contagious, or communicable diseases must be reported. In addition, confidential information may also be disclosed pursuant to a judicial proceeding or to notify a person to whom a patient may pose a danger.

In spite of the numerous exceptions to the contrary, patients legitimately demand and expect confidentiality in many areas of their treatment. Generally speaking, patients must be asked to consent before being photographed or having others unrelated to the case (including medical students) observe a medical procedure; they have the right to refuse to see anyone not connected to a hospital; they have the right to have a person of the patient's own sex present during a physical examination conducted by a member of the opposite sex; they have the right to refuse to see persons connected with the hospital who are not directly involved in the patient's care and treatment (including social workers and chaplains); and they have the right to be protected from having details of their condition made public.

A patient owns the information contained in medical records, but the owner of the paper on which they are written is usually considered the actual owner of the records. The patient's legal interest in the records generally means that the patient has a right to see the records and is entitled to a complete copy of them. The patient's rights are subject to reasonable limitations such as requiring inspection and copying to be done on the doctor's premises during working hours.

Federal Patients' Bill of Rights

Dissatisfaction with an expanding corporate healthcare industry dominated by profit margins has spawned numerous reform ideas. One idea that has gained a foothold is a patients' federal bill of rights. In 1997, President Bill Clinton appointed an Advisory Commission on Consumer Protection and Quality in the Health Care Industry. The commission was directed to propose a "consumer bill of rights." The 34-member commission developed a bill of rights that identified eight key areas: information disclosure, choice of providers and plans, access to emergency service, participation in treatment decisions, respect and nondiscrimination, confidentiality of health information, complaints and appeals, and consumer responsibilities.

The proposed rights include: the right to receive accurate, easily understood information in order to make informed health care decisions; the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality health care; the right to access emergency healthcare services; the right and responsibility to fully participate in all decisions related to their health care; the right to considerate, respectful care from all members of the healthcare system at all times and under all circumstances; the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected; the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them; and the responsibility of consumers to do their part in protecting their health. This bill of rights has been debated in Congress and there are bipartisan areas of agreement, but, as of 2003, no final action has taken on enacting a set of rights into federal law.

further readings

Annas, George J. 2003. The Rights of Patients. 3d ed. Carbondale: Southern Illinois Univ. Press.

Barnes, James A. 2002. "Action Versus Inaction." National Journal (March 9).

"Dying Wishes Are Ignored by Hospitals, Doctors." 1996. Trial 32 (February).

Hoffmann, Diane E., Sheryl Itkin Zimmerman, and Catherine J. Tompkins. 1996."The Dangers of Directives or the False Security of Forms." Journal of Law, Medicine, and Ethics 24 (spring).

"Living Wills." West's Legal Forms (Elder Law). 1994 and 1996 Supps. St. Paul, Minn.: West.

Oberman, Michelle. 1996."Minor Rights and Wrongs." Journal of Law, Medicine, and Ethics 24 (summer).

Rodwin, Marc A. 1994. "Patient Accountability and Quality of Care: Lessons from Medical Consumerism and the Patients' Rights, Women's Health and Disability Rights Movements." American Journal of Law and Medicine 20 (spring-summer).

cross-references

Acquired Immune Deficiency Syndrome; Competent; Death and Dying; Duress; Fetal Rights; Genetic Screening; Health Care Law; Health Insurance; Liability; Organ Transplantation; Physicians and Surgeons; Privacy; Privileged Communication.

Patient Rights

Sections within this essay:

Background

The advent of the "patient rights" movement and associated legislation is a relatively recent phenomenon, having first taken root in the early 1990s. However, as of January 2006, a divided and partisan U.S. Congress was still grappling with various provisions for a federal Patients' Rights Law, and none appeared likely in the foreseeable future. Part of the delay was due to the 2004 U.S. Supreme Court decision in Aetna v. Davila, which severely limited patients' rights to sue their HMOs in state courts. (The Court held that the federal Employee Retirement Income Security Act [ERISA] preempted state laws in this area.) The decision impacted and invalidated provisions in at least ten state patients' rights laws.

Notwithstanding, all states have enacted some form of health care law addressing "patient rights." The problem remains that there is no uniformity of laws, and the scope of rights afforded patients varies greatly from state to state.

The term "patient" generally refers to a person who is receiving medical treatment and/or who is under medical care. Certain vulnerabilities attach to the status of patient. For this reason, certain laws have been passed at both the national and state levels to protect people's interests which otherwise might be compromised by medical, social, governmental, and/or financial entities. These protective provisions may be in the form of passive guarantees, or they may spring into effect as a result of some affirmative act on an individual's part, such as the execution of a legal document, like a Patient Directive or Durable Power of Attorney (see below).

Generally speaking, the rights of a patient fall into a few main categories: the right to autonomy and self-determination (which includes the related right to withhold or grant informed consent ), the right to privacy concerning medical information, and the right to receive treatment (not be refused treatment). Some hospitals refer to these collectively as a "Patient Bill of Rights," but there is no such "bill of rights" document per se, excepting a generally accepted (but not mandated) model version prepared by the American Medical Association and frequently used by hospitals.

Right to Autonomy and Self Determination

In early 2005, a shocked and empathetic nation watched the private and personal drama of a family in conflict play out on national television, as the parents of quasi-comatose Terri Schiavo fought with her husband over whether to remove her from life support. Ultimately, the husband prevailed, on the notion that his wishes to remove life support were consistent with what she had told him she would want. His sworn testimony was contrary to that of her parents, and the entire controversy served to remind persons of the need to communicate their wishes prior to an emergency which may prevent them from communicating.

Considered one of the most important and fundamental of all is patients' right to direct the medical treatment they choose to receive or reject. Patient "autonomy" or self-determination is at the core of all medical decision-making in the United States. It means that patients have the right and ability to make their own choices and decisions about medical care and treatment they receive, as long as those decisions are within the boundaries of law. There is a legal presumption that they are fit and competent to make those decisions until a court determines otherwise.

But what happens when they are suddenly incapacitated and unable to express their wishes regarding their medical care? Thanks to a few historical developments, they can now pre-determine the medical care they wish to receive in the event that they become incapacitated by mental or physical injury or condition. By making their wishes and directives known to their doctors and others before they might suffer the loss of fitness or competency, they are able to avoid the circumstance of a court being forced to second-guess what is best for them or what their wishes would be. Additionally or in the alternative, patients may delegate to another person the power to make these medical decisions for them, should they lose consciousness or competency in the future.

These two concepts sound redundant but are actually quite different. In the first instance, patients have declared in advance the medical treatment they wish to receive in the event that they can no longer express those wishes (commonly referred to as a "living will"). In the second instance, patients have authorized another person to make those medical decisions for them in the event that they can no longer make themselves (commonly referred to as a "health care proxy," or "durable power of attorney for health care.") Additionally, most "living will" documents address medical care and efforts in the event of life-threatening or terminal conditions. Durable powers of attorney generally address medical decision-making in any circumstance where patients are unable or not competent to speak for themselves, whether the condition is temporary or permanent.

The modern trend has been to create a "hybrid" of the above, which combines a declaration of the patients' own wishes with an appointment of a durable power of attorney to make decisions for them (which must be consistent with their declared wishes). Any or all of these legal devices are generally referred to as "advance directives for health care."

The Uniform Health-Care Decisions Act (UHCDA), approved in 1993 by the National Conference of Commissioners on Uniform State Laws, constitutes such a "hybrid" law intended to replace the fragmented and often conflicting laws of each state. Because existing laws (often several within each state) must be separately reviewed and compared to those provisions comprehensively collected under the umbrella Act, adoption has been slow. As of 2001, only six states had adopted the Act to replace their existing statutory provisions (Alabama, Delaware, Hawaii, Maine, Mississippi, and New Mexico) but dozens more have modeled their own comprehensive health care acts after the UHCDA.

Of course, advance directives are useless unless individuals provide copies of them to their doctors and their families or attorneys-in-fact, while they are still competent and before any incapacitation arises. Otherwise, medical personnel cannot effect their wishes if they are not made aware of them. Importantly, individuals should also keep a copy at their residence, in the event an ambulance is called on their behalf if a medical emergency arises. Without direction, ambulance personnel may initiate life-sustaining procedures that are contrary to their wishes. This is often the case for terminally ill patients who choose home hospice care and have not made other persons aware of their advance directives (even though their treating physicians may be aware of them).

One more note: if individuals do not execute an advance directive in any form, many states have passed "surrogate consent acts" which mandate the priority of surrogates permitted to make decisions about their care, should they be incapacitated.

History

In 1990, the U. S. Supreme Court decided one of the most important cases of the century, with far-reaching consequences for all citizens, when it ruled that every person had a fundamental right of self determination with regard to refusing life-sustaining medical treatment. In the case of Cruzan v. Commissioner, Missouri Department of Health, 497 U.S. 261 (1990), the issue centered around who had the right to decide to remove a permanently brain-damaged and comatose patient from life-support systems, in the absence of the patient's own ability to express that determination. (The case included family testimony expressing what they felt the patient's wishes would have been.)

In Cruzan, the family of comatose Nancy Cruzan, an automobile accident victim, requested that she be removed from life support systems and be allowed to die naturally. The hospital refused to withdraw the life support equipment. Cruzan remained on life support in an irreversible coma for the next nine years, while the case went through several appeals. Follow ing the Supreme Court's decision, Cruzan's life support equipment was discontinued and she died naturally thirteen days later.

The horror of that scenario, combined with the high court's recognition of a constitutional right of self determination, led to a flurry of state enactments of various laws permitting living wills or advance directives for health care. However, state laws vary considerably, and it is imperative that individuals first research the laws of their state or consult an attorney before attempting to create any of these legal documents. That said, many state offices or private organizations provide pre-printed forms that comply with state laws, so it is not always necessary to consult legal counsel.

Living Wills

A living will is a form of advance directive that provides specific instructions to health care providers about patient wishes to receive or refrain from receiving life-sustaining medical care in the event of a life-threatening illness, injury, or incapacitation. The document only has effect in the event that individuals are physically and/or mentally incapable of expressing their wishes at the time. Doctors and medical personnel are generally bound to adhere to the wishes patients have articulated in their living will, even if those wishes are contrary to those of the family or loved ones, and even if those wishes are inconsistent with those of the doctors or medical personnel.

Although a majority of states have living will statutes, they vary greatly in how far the law will permit individuals to dictate the extent of life-sustaining treatment they may refuse to receive. On one end of the spectrum are those states which only permit people to refuse "artificial means" of sustaining life (such as heart-lung machines, respirators, etc.) all the way to the other end of the spectrum, where less than a handful of states permit individuals to request artificial means to accelerate the timing of their death (such as Oregon's Death With Dignity Act, or other "right to die" initiatives).

Durable Powers or Attorney

Sometimes referred to as a "health care proxy," the more common term for the appointment of a surrogate decision-maker is the creation of a "durable power of attorney." By placing the word "durable" in front of a regular power of attorney, individuals create an "enduring" power for their appointed "attorney-in-fact" that survives and continues in effect, even if they become incapacitated or lose competency. A durable power of attorney for health care decisions can be worded so that it takes effect only under conditions in which where individuals are unable to competently express their own wishes, or it may be worded to have immediate and continuous effect, whether or not they are incapacitated.

The Patient Self-Determination Act (PSDA) of 1990

In 1990, Congress passed The Patient SelfDetermination Act (PSDA) 42 U.S.C. §§ 1395 et seq., a federal law which requires health care providers (that are recipients of federal Medicaid/Medicare funds) to inform all adult patients of their right to accept or refuse medical treatment, and their right to execute an advance directive. This law had particular impact upon nursing homes and assisted living facilities, because it required them to ask each /patient/ resident whether an advance directive was in effect, and if not, if he or she desired one.

Euthanasia and the "Right to Die" Movement

There are medical, legal, and ethical distinctions between directing the cessation of life-sustaining medical care or treatment, and directing the initiation of medical technique or treatment that accelerates the onset of death. In all but less than a handful of states, "patient rights" do not include the right to choose euthanasia and/or physician-assisted suicide, and these remain patently illegal. In those few states that permit such initiatives, it is imperative that individuals seek legal counsel prior to committing to such a directive, so that they can fully appreciate the ramifications of their decision upon such factors as life insurance benefits exclusions, health care insurance coverage, the right to change their minds, the possibility of failed initiatives, religious considerations, etc.

In the 1997 U. S. Supreme Court case of Washington v. Glucksberg, 117 S. Ct. 2258, the nation's highest court concluded that the "right to die" is not a constitutional right, and that a person's right to assistance in committing suicide is not a fundamental liberty interest protected by the Due Process Clause of the Fourteenth Amendment to the U. S. Constitution. The Court cited a state's legitimate government interest in prohibiting intentional killing and preserving human life, among other stated interests. States are, therefore, free to enact laws that treat such assisted suicides as crimes.

Informed Consent

Directly related to people's right to make decisions about their medical care is the fact that their ability to make such decisions may be limited by the amount of information they have received regarding their choices or alternatives. Therefore, virtually all states have recognized, either by express statute or common law, their right to receive information about their medical condition and treatment choices, in plain language terms that they can understand, and in sufficient amounts such that they are able to make an "informed" decision about their health care.

People have a right to know what their diagnosis is, and the doctor generally cannot refrain from advising them of the true nature of their condition. A doctor may temporarily withhold some information if the doctor believes in good faith that their condition will be substantially worsened by the knowledge of their diagnosis (referred to as "therapeutic privilege"). Also, doctors may have privilege to withhold certain diagnoses or records of mental conditions, if the disclosure of such information would create a risk of harm to patients or others. Although patients generally have a right to review their medical records, doctors may substitute "summary reports" or summary statements under circumstances of limited disclosure.

Before individuals consent to any treatment for a condition, they should receive, at a minimum, an explanation of their health problem, the treatment options available to them (including any standard treatments not available through their particular health care provider), the pros and cons of the various treatment choices, and the expected prognosis or consequence associated with each. If they have received this information, any consent to treatment that they subsequently give will be presumed to be an "informed consent."

During medical emergencies, doctors are not required to obtain permission to save individuals' lives or end the emergency, in the absence of any advance directive from patients notified them of. Also, patient consent for routine treatments or procedures such as having blood drawn or providing a urine sample, is presumed by the fact that the patients have solicited a medical assessment and diagnosis from their doctors. On the other hand, their consent cannot be "informed" if they are intoxicated, under chemical influence of drugs or medicine, or (sometimes) in extreme pain or quasi-conscious; the law will presume that their judgment or consent was impaired under those circumstances. A doctor who fails to obtain an informed consent for non-emergency treatment or care may be charged with a criminal offense.

If individuals are incapacitated and have executed an advance directive, their attorneys in fact must consent to their treatment (durable power of attorney) and/or the health care provider must treat them in a manner consistent with their declared wishes (living will).

Right to Privacy

The fundamental right to privacy, guaranteed by the Fifth and Fourteenth Amendments to the U. S. Constitution, protects against unwarranted invasions of privacy by federal or state entities, or arms thereof. As early as in Roe v. Wade, 410 U.S. 113 (1973), the U. S. Supreme Court acknowledged that the doctor-patient relationship is one which evokes constitutional rights of privacy and confidentiality. But even that right is not absolute and must be weighed against the state or federal interest at stake.

For example, in Whalen v. Roe, 429 U.S. 589 (1977), a group of physicians joined patients in a lawsuit challenging the constitutionality of a New York statute that required physicians to report to state authorities the identities of patients receiving Schedule II drugs (controlled substances). The physicians alleged that such information was protected by the doctor-patient confidentiality, while the patients alleged that such disclosure was an invasion of their constitutional right to privacy. The Supreme Court did not disagree with the lower court's finding that "the intimate nature of a patient's concern about his bodily ills and the medication he takes—are protected by the constitutional right to privacy." However, the high court concluded (after balancing the state's interests) that "Requiring such disclosures to representatives of the State having responsibility for the health of the community, does not automatically amount to an impermissible invasion of privacy."

There are a few key points to remember about the privacy or confidentiality of medical information:

• Generally, what is considered private is information that is learned or gained by a doctor, during or as a result of a doctor's communications with patients, or examination of them, or medical assessment of them. The privacy extends to documents and forms, whether completed by them or their health care providers, that are contained in their personal medical records.
• The scope of the duty of doctor-patient confidentiality, as well as the existence of a doctor-patient legal privilege, varies from state to state. No federal law governs doctor-patient confidentiality or privilege.
• The duty to maintain the privacy of one's own medical information continues even after individuals stop seeing or treating with the health care provider.
• The right to privacy of medical information is not absolute. Doctors may divulge or disclose personal information, against patients' will, under very limited circumstances. Some exceptions include the duty to warn police or third persons of a patient's threats of harm, or the duty to report to health authorities the fact of sexually transmitted or communicable diseases, including HIV or AIDS status. In many states, health care providers are required to report treatments of gunshot or stab wounds and suspected incidence of child abuse.

The Right to Treatment

If individuals do not carry health insurance, they are still entitled to hospital emergency care, including labor and delivery care, regardless of their ability to pay. The federal Emergency Medical Treatment and Active Labor Act (EMTALA), 42 U.S.C. § 1395, which is a separate section of the more comprehensive 1985 Consolidated Omnibus Reconciliation Act (COBRA), mandates minimum standards for emergency care by hospital emergency rooms. The law requires that all patients who present with an emergency medical condition must receive treatment to the extent that their emergency condition is medically "stabilized," irrespective of their ability to pay for such treatment.

An emergency medical condition is defined under federal law as one that manifests itself by acute symptoms of sufficient severity (including severe pain, psychiatric disturbance, and/or symptoms of substance abuse) such that the absence of immediate medical attention could reasonably be expected to result in the following:

• placing the health of the individual (or unborn child) in serious jeopardy
• the serious impairment of a bodily function
• the serious dysfunction of any bodily function or part
• the inadequate time to effect a safe transfer of a pregnant woman to another hospital before delivery, or, that the transfer may pose a threat to the health or safety of the woman or unborn child

The law goes on to define "stabilization" as meaning "that no material deterioration of the condition is likely within reasonable medical probability to result from or occur during the transfer of the patient from a facility" (or discharge).

However, once the emergency is over and a patient's condition is stabilized, the patient can be discharged and refused further treatment by private hospitals and most public hospitals. If the individual seeks routine medical care or schedule a doctor's appointment for non-emergency medical problems, doctors have a general right to refuse treatment if they have no insurance or any other means of paying for the provided care.

There are numerous protections for HIV-positive and AIDS patients that prohibit hospitals and facilities from refusing treatment if the facility's staff has the appropriate training and resources. However, most private physicians and dentists are under ethical but not legal obligations to provide treatment.

Individuals also have a legal right to not be released prematurely from a hospital. If they are advised to vacate their hospital room because of a standardized "appropriate length of stay" generally approved for their specific condition, they have the right to appeal that discharge if they believe that they are not well enough to leave. They should consult both their doctors and a hospital patient representative for procedural information regarding an appeal. However, the policy generally works in a way that makes them liable for payment of excess hospital stays if they should lose the appeal.

Individuals have the right to refuse treatment and leave a hospital at any time, assuming that they are mentally competent. The hospital may ask them to sign a document releasing it from liability if their medical condition worsens as a result of their refusal to accept the recommended treatment.

If individuals lose mental competency and appear to be a danger to themselves or others, they may be taken to a hospital against their will and held for involuntary "commitment." Most states require an immediate written statement or affidavit affirming the reasons for their involuntary commitment. However, within a short period of time (e.g., 72 hours), most states require a full examination by a medical and psychiatric doctor, a diagnosis, and (within a certain number of days) a hearing at which they will have the right to be represented by counsel. The purpose of the hearing is to establish whether there is sufficient information to justify their continued commitment or whether they should be released. Also, their attorneys will advise them as to whether there had been sufficient cause to justify holding them against their will in the first place.

State Provisions

In the following summaries, "DPA" is substituted for "Durable Power of Attorney." The acronym "UHCDA" is substituted for the Uniform Health Care Decisions Act, discussed previously. The reference to "combined advance directives" means that both living wills and proxy or power of attorney directives are authorized.

ALABAMA: Alabama has adopted an Act modeled after the UHCDA at Alabama Code of 1975, Sections 22-8A-2 to 11, enacted in 1997 (amended in 2001). Patients must be in a terminal condition or permanently unconscious. The state also has a DPA Act, Section 26-1-2, revised in 1997.

ALASKA: Alaska Statute Section 13.26.332 to.356 (specifically, 13-22.344(l) generally authorizes DPA for health care.

ARIZONA: Arizona has enacted a Comprehensive Health Care Decisions Act under Arizona Revised Statutes Annotated, Section 36-3231, dated 1992 and amended in 1994. All forms of advance directives permitted in the state are covered under Sections 3201 to 3262. State law was impacted by the Supreme Court's 2004 decision in Aetna.

ARKANSAS: Arkansas has a Living Will Declaration Statute, Section 20-17 202 to 214. The 1999 Arkansas Laws Act 1448 (House Bill 1331) created a special DPA for health care.

CALIFORNIA: California Probate Code, Sections 4600 to 4948 (enacted in 1999) and Sections 4711 to 4727 authorize combined advance directives and a Comprehensive Health Care Decisions Act. There is a limitation on DPA power for civil commitments, electro-convulsive therapy, psycho-surgery, sterilization, and abortion. State law was impacted by the Supreme Court's 2004 decision in Aetna.

COLORADO: Colorado law authorizes health care DPA under Revised Statutes, Section 15-14-501 to 509, enacted in 1992. A separate Surrogate Consent Act is at Section 15-18.5-103.

CONNECTICUT: Connecticut authorizes DPA and combined advance directives under General Statutes, Section 1-43 (1993) and Sections 19a-570 to 575 (1993). Reviewed but not amended in 1998.

DELAWARE: Delaware Code Title 16, Sections 2501 to 2517, revised in 1996 and 1998, authorize combined advance directives modeled after the UHCDA.

DISTRICT OF COLUMBIA: D.C. Code Section 21-2210 (1998) covers the DPA for Health Care Act.

FLORIDA: Florida Statutes Annotated, Sections 765-101 to 404 cover the state's Comprehensive Health Care Decisions Act, last amended in 2000.

GEORGIA: Appointment of a Special DPA is authorized under Georgia Code Annotated, Section 31-36-1 to 13 (1990, amended in 1999). It also has a separate Informed Consent statute under Section 31-9-2 (1998). In 1999, the state enacted the "Temporary Health Care Placement Decision Maker for an Adult Act" which basically expands the Informed Consent Statute. State law was impacted by the Supreme Court's 2004 decision in Aetna.

HAWAII: Hawaii Revised Statute Section 327E-1 to 16 covers the state's Comprehensive Health Care Decisions Act, modeled on the UHCDA. (1999, amended in 2000).

IDAHO: Idaho Code 39-4501 to 4509, last amended in 2001, authorizes the appointment of a Special DPA. Section 39-4303 contains the state's Informed Consent statute.

ILLINOIS: (755 Illinois Compiled Statutes 45/1-1 to 4-12, amended in 1999, creates a Special DPA for health care. 755 ILCS 40/25 (1998) addresses the state's Surrogate Consent Act, in the absence of an advance directive.

INDIANA: Indiana Code Section 30-5-1 to 5-10 authorizes a general DPA. Section 16-36-1-1 to 1-14 contains provisions for the Health Care Agency and Surrogate Consent Act.

IOWA: A Special DPA is authorized under Iowa Code Section 144B.1 to B12, enacted in 1991. A separate Living Will Statute is found at Section 144A.7 (1998).

KANSAS: Kansas Statutes Annotated, Sections 58-625 to 632, amended in 1994, create a special DPA for health care.

KENTUCKY: Kentucky Revised Statutes, Sections 311.621 to 643, amended in 1998, provide for a combined advance directive. A separate Living Will Statute is found at Section 311.631 (1999).

LOUISIANA: Louisiana Revised Statutes, 40:1299.58.1 to.10 (1999) provide for a Living Will (with proxy powers addressed in that statute).

MAINE: Maine Revised Statutes, Title 18A, Sections 5-801 to 817 (1995) create a combined advance directive authorization, modeled after the UHCDA. State law was impacted by the Supreme Court's 2004 decision in Aetna.

MARYLAND: Maryland Code Annotated, Chapter: Health-General, Sections 5-601 to 608, (amended in 2000) permit combined advance directives.

MASSACHUSETTS: Mass. Gen. Laws Ann., Ch. 201D (1990) provides for the appointment of a special DPA.

MICHIGAN: MCL 333.3651 to 5661 provides for special DPA, with limitations on powers involving pregnancy.

MINNESOTA: Minnesota Statutes Annotated 145C.01 to.16 (1993) (substantially revised in 1998) provides for a combined advance directive. Section 253B.03(Subd 6b) provides for advance directives involving mental health patients.

MISSISSIPPI: Miss. Code Section 41-41-201 to 229 (1998 replacing 1990 law) provides for an combined advance directive modeled after the UHCDA.

MISSOURI: Mo. Ann. Statutes, Sections 404.700 to 735 and Section 800-870 (1991) create a special DPA and DPA for health care.

MONTANA: Montana Code Annotated, Sections 50-9.101 to 111, and 201 to 206 (1991) combine a Living Will statute with a health care proxy authorization.

NEBRASKA: Nebraska Revised Statutes, Sections 30-3401 to 3434 (amended in 1993) permit the appointment of special DPA for health care. Special limitations on the DPA power for pregnancy, life sustaining procedures, and hydration/nutrition.

NEVADA: Nevada Revised Statutes, Sections 449.800 to 860 provide for special DPA for health care. Section 449.626 (1997) contains the state's Living Will Statute.

NEW HAMPSHIRE: The state provides for a Special DPA under Statute Section 137-J:1 to J:16 (1991, revised in 1993).

NEW JERSEY: New Jersey provides for combined advance directives under Statute Section 26:2H-53 to 78 (1991). State law was impacted by the Supreme Court's 2004 decision in Aetna.

NEW MEXICO: Statute Sections 24-7A-1 to 16 (1995, amended in 1997) provide for combined advanced directives modeled after the UHCDA.

NEW YORK: N.Y. Public Health Law, Sections 2980 to 2994 (1990) provide for the appointment of a special DPA. Additionally, Section 2695 (1999) adds a specialized Surrogate Consent Statute, for use in "do not resuscitate" (DNR) directives.

NORTH CAROLINA: North Carolina General Statute 32A-15 to 26 (1993, amended in 1998) creates a special authority for DPA. Section 122C-71 to 77 (1997) addresses advance directives for mental health patients. Section 90-322 contains the Living Will Statute. State law was impacted by the Supreme Court's 2004 decision in Aetna.

NORTH DAKOTA: Code Section 23-06.5-01 to 18 (amended in 2001) authorizes a special DPA for health care. There is a separate Informed Consent statute under Section 23-12-13.

OHIO: Ohio Revised Code Sections 1337-11 to 17, (1989, 1991) create authority for a special DPA for health care. A separate Living Will Statute is found at Section 2133.08 (1999).

OKLAHOMA: Title 63, Sections 3101.1 to.16 (last amended in 1998) provide for combined advance directives. There is a separate statute provision that addresses experimental treatments at Title 63, Section 3102A. State law was impacted by the Supreme Court's 2004 decision in Aetna.

OREGON: Oregon Revised Statute 127-505 to 640 (enacted in 1989, amended in 1993) provides for combined advance directives. Sections 127.700 to 735 address mental health advance directives. Section 127.635 specifically addresses living wills.

PENNSYLVANIA: Pennsylvania has a Living Will statute found at Statute Title 20, Sections 5401 to 5416 (1993). A general DPA (not specific to health care) is permitted under Sections 5601 to 5607.

RHODE ISLAND: Rhode Island General Laws, Sections 23-4:10-1 to 12 (amended in 1998) permit a special DPA for health care decisions.

SOUTH CAROLINA: South Carolina Code Section 62-5-501 to 504 creates a special DPA for health care. Section 44-66-30 (1998) provides separately for the Surrogate Consent Act in the absence of an advance directive.

SOUTH DAKOTA: The state's Codified Laws, Section 34-12C 1 to 8 and Section 59-7-2.1 to 8 (1990) provide for the appointment of a special DPA. There is a separate Surrogate Consent Act under Section 44-66-30 (1998).

TENNESSEE: Tennessee Code Annotated, Sections 34-6-201 to 214 (1990, amended 1991) create the authority for special DPAs.

TEXAS: Texas Health and Safety Code, Sections 166.001 to 166.166 (amended in 1999) authorize a special DPA. In 1997, the state enacted its Advance Directive Act under Section 166.039. State law was impacted by the Supreme Court's 2004 decision in Aetna.

UTAH: Utah Code Annotated, Sections 75-2-11-1 to 1118 (amended in 1993) authorizes a special DPA for health care. Since then, it has added its Comprehensive Health Care Decisions Act under Sections 75-2-1105 to 1107 (1998).

VERMONT: Statute Title 14, Sections 3451 to 3467 (1989) authorize the appointment of a special DPA for health care.

VIRGINIA: Virginia Code Sections 54.1-2981 to 2993 (1992, amended in 2000) provides for combined advance directives, including a version of a comprehensive health care decisions act at Section 54.1-2986.

WASHINGTON: Revised Code Sections 11.94.010 to 900 (1990) provide for general DPA, with limitations on power for electro-convulsive therapy, amputation, and psychiatric surgery. A separate Informed Consent statute is contained under Section 7.70.065 (1998). State law was impacted by the Supreme Court's 2004 decision in Aetna.

WEST VIRGINIA: W. Va. Code Section 16-30-1 to 21 (2000) provide for combined advance directives, but mandate separate documents for living wills and medical powers of attorney. State law was impacted by the Supreme Court's 2004 decision in Aetna.

WISCONSIN: Wisconsin Statutes Annotated, Sections 155.01 to 80 and Section 11.243.07 (6m) (amended 1998) authorize a special DPA.

WYOMING: Wyoming Statutes Annotated, Section 3-5-201 to 214 (specifically Section 3-209) (1991, 1992) authorize appointment of a special DPA. The identical statute is also contained at Section 35-22-105(b) (1998) but is referred to as the Living Will statute.

Additional Resources

"A Few Facts About the Uniform Health-Care Decisions Act." Available at http://www.alzheimers …

"Alzheimer's Disease and Related Dementias: Legal Issues in Care and Treatment, 1994." A Report to Congress of the Advisory Panel on Alzheimer's Disease. Available at http://www.alzheimers

"Federal Laws in Emergency Medicine." Derlet, Robert, M.D. eMedicine Journal, 22 January 2002. Available at http://www.emedicine.com/emerg/topic860.htm.

"Health Care Power of Attorney and Combined Advance Directive Legislation." American Bar Association, Commission on Legal Problems of the Elderly. July 2000.

Law for Dummies. Ventura, John. IDG Books Worldwide, Inc. 1996.

"Surrogate Consent in the Absence of an Advance Directive." American Bar Association, Commission on Legal Problems of the Elderly. July 2001.

The Court TV Cradle-to-grave Legal Survival Guide. Little, Brown and Company: 1995.

Organizations

The American Bar Association (Commission on Legal Problems of the Elderly

740 15th Street NW
Washington, DC 20005 USA
Phone: (202) 992-1000

Choice in Dying

200 Varick Street
New York, NY 10014 USA
Phone: (800) 989-WILL
URL:

The National Association for Home Health Care

228 Seventh Street SE
Washington, DC 20003 USA
Phone: (202) 547-7424
URL: [email protected]

The National Association of People with AIDS

1413 K Street NW
Washington, DC 20005 USA
Phone: (202) 898-0414

The Patient Advocacy List

URL: http://infonet.welch.jhu.edu/advocacy.html

PATIENT RIGHTS

Joint Commission on Accreditation of Healthcare Organizations

1994

Patient Rights is a section of the Joint Commission on Accreditation of Healthcare Organizations' (JCAHO) Accreditation Manual for Hospitals, 1994. Although many healthcare organizations demonstrate their recognition and support of patient/client rights by issuing lists of those rights, no list can assure that the rights are respected. The standards on patient rights included in JCAHO's Accreditation Manual are designed to reflect the implementation, as well as the existence, of institutional policies and procedures for the exercise and protection of a specified set of patient rights.

The scoring of the standards in this chapter will reflect evidence of the implementation of policies and procedures as well as the existence of such policies and procedures.

RI.1 The organization supports the rights of each patient.

RI.1.1 Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:

Intent of RI.1 and RI.1.1

The policies and procedures that guide the organization's interaction with and care of the patient demonstrate its recognition and support of patient rights.

No listing of patient rights can assure the respect of those rights. It is the intent of these standards that the organization's interaction with and care of the patient reflect concern and respect for the rights of the patient.

The organization's policies and procedures describe the mechanisms or processes established to support the following patient rights:

• Reasonable access to care;
• Considerate (and respectful) care that respects the patient's personal value and belief systems;
• Informed participation in decisions regarding his/ her care;
• Participation in the consideration of ethical issues that arise in the provision of his or her care;
• Personal privacy and confidentiality of information;
• Designation of a representative decision maker in the event that the patient is incapable of understanding a proposed treatment or procedure or is unable to communicate his/her wishes regarding care.

RI.1.1.1 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient to the hospital's reasonable response to his/her requests and needs for treatment or service, within the hospital's capacity, its stated mission, and applicable law and regulation;

Intent of RI.1.1.1

In response to the patient's request and need, the organization provides care that is within its capacity, its stated mission and philosophy, and applicable law and regulation. When the organization cannot meet the request or need for care because of a conflict with its mission or philosophy or incapacity to meet the patient's needs or requests, the patient may be transferred to another facility when medically permissible. Such a transfer is made only after the patient has received complete information and explanation concerning the need for and alternatives to such a transfer. The transfer must be acceptable to the receiving organization.

RI.1.1.2 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient to considerate and respectful care;

RI1.1.2.1 The care of the patient includes consideration of the psychosocial, spiritual, and cultural variables that influence the perceptions of illness.

Intent of RI.1.1.2 and RI.1.1.2.1

The provision of patient care reflects consideration of the patient as an individual with personal values and a belief system that impact his/her attitude toward and response to the care provided by the organization. The organizational policies and procedures that guide patient care include recognition of the psychosocial, spiritual, and cultural values that affect the patient's response to the care given. Organizational policies and procedures allow the patient to express spiritual beliefs and cultural practices that do not harm others or interfere with the planned course of medical therapy for the patient.

RI.1.1.2.2 The care of the dying patient optimizes the comfort and dignity of the patient through

RI.1.1.2.2.1 treating primary and secondary symptoms that respond to treatment as desired by the patient or surrogate decision maker;

RI.1.1.2.2.2 effectively managing pain; and

RI.1.1.2.2.3 acknowledging the psychosocial and spiritual concerns of the patient and the family regarding dying and the expression of grief by the patient and family.

NOTE: The term dying is used to refer to an incurable and irreversible condition such that death is imminent. Imminent is seen as impending or about to happen.

Intent of RI.1.1.2.2 Through RI.1.1.2.2.3

All hospital staff are sensitized to the needs of the dying patient in an acute care hospital. Support for the psychological, social, emotional, and spiritual needs of the patient and family demonstrates respect for the patient's values, religion, and philosophy. The goal of respectful, responsive care of the dying patient is to optimize the patient's comfort and dignity by providing appropriate treatment for primary and secondary symptoms as desired by the patient or surrogate decision maker, responding to the psychosocial, emotional, and spiritual concerns of the patient and family, and managing pain aggressively. (The management of pain is appropriate for all patients, not just dying patients. Guidelines such as those published by the Agency for Health Care Policy and Research for Acute Pain Management reflect the state of knowledge on effective and appropriate care for all patients experiencing acute pain.)

RI.1.1.3 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:]The right of the patient, in collaboration with his/her physician, to make decisions involving his/her health care, including

RI.1.1.3.1 the right of the patient to accept medical care or to refuse treatment to the extent permitted by law and to be informed of the medical consequences of such refusal, and

RI.1.1.3.2 the right of the patient to formulate advance directives and appoint a surrogate to make health care decisions on his/her behalf to the extent permitted by law.

RI.1.1.3.2.1 The organization has in place a mechanism to ascertain the existence of and assist in the development of advance directives at the time of the patient's admission.

RI.1.1.3.2.2 The provision of care is not conditioned on the existence of an advance directive.

RI.1.1.3.2.3 Any advance directive(s) is in the patient's medical record and is reviewed periodically with the patient or surrogate decision maker.

Intent of RI.1.1.3 Through RI.1.1.3.2.3

The quality of patient care is enhanced when the patient's preferences are incorporated into plans for care. The process by which care and treatment decisions are made elicit respect and incorporate the patient's preferences. Sound medical judgment is provided to the patient or the patient's surrogate decision maker for informed decision making.

In hospitals providing services to neonate, child, and adolescent patients, a mechanisms exists that is designed to coordinate and facilitate the family's and/or guardian's involvement in decision making throughout the course of treatment. The patient is responsible for providing, to the best of his/her knowledge, accurate and complete information about present complaints, past illnesses, hospitalizations, medications, advance directives, and other matters relevant to his/her health or care. The patient is also responsible for reporting whether he/she clearly comprehends a contemplated course of action and what is expected of him/her.

The hospital ascertains the existence of advance directives, and health care professionals and surrogate decision makers honor them within the limits of the law and the organization's mission and philosophy. An advance directive is a document a person uses to give directions about future medical care or to designate another person to give directions about medical care should he/she lose decision-making capacity. Advance directives may include living wills, durable powers of attorney, or similar documents and contain the patient's preferences.

RI.1.1.4 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient to the information necessary to enable him/her to make treatment decisions that reflect his/ her wishes;

RI.1.1.4.1 A policy on informed decision making is developed by the medical staff and governing body and is consistent with any legal requirements.

Intent of RI.1.1.4 and RI.1.1.4.1

The patient is given clear, concise explanation of his/her condition and of any proposed treatment(s) or procedure(s), the potential benefit(s) and the potential drawback(s) of the proposed treatment(s) or procedure(s), problems related to recuperation, and the likelihood of success. Information is also provided regarding any significant alternative treatment(s) or procedure(s).

This information includes the identity of the physician or other practitioner who has primary responsibility for the patient's care and the identity and professional status of individuals responsible for authorizing and performing procedures or treatments. The information also includes the existence of any professional relationship among individuals treating the patient, as well as the relationship to any other health care or educational institutions involved in his/ her care.

RI.1.1.5 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient to information, at the time of admission, about the hospital's

RI.1.1.5.1 patient rights policy(ies), and

RI.1.1.5.2 mechanism designed for the initiation, review, and, when possible, resolution of patient complaints concerning the quality of care;

Intent of RI.1.1.5 through RI.1.1.5.2

The organization assists the patient in exercising his/her rights by informing the patient of those rights during the admission process. The information is given to the patient or his/her representative in a form that is understandable to the patient (for example, in a language that is understood by the patient).

The patient has the right, without recrimination, to voice complaints regarding the care received, and to have those complaints reviewed and, when possible, resolved. This right, and the mechanism(s) established by the organization to assist the patient in exercising this right, are explained to the patient during the admission process.

RI.1.1.6 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient or the patient's designated representative to participate in the consideration of ethical issues that arise in the care of the patient;

RI.1.1.6.1 The organization has in place a mechanism(s) for the consideration of ethical issues arising in the care of patients and to provide education to caregivers and patients on ethical issues in health care.

Intent of RI.1.1.6 and RI.1.1.6.1

Health care professionals provide patient care within an ethical framework established by their profession, the hospital, and the law. The health care professional has an obligation to respect the views of the patient or the patient's designated representative when ethical issues arise during the patient's care. Moreover, the hospital has an obligation to involve the patient or the patient's representative in the organizational mechanism for considering such issues. Such mechanisms may include community programs, education programs for patients or their representatives, and education programs for staff members. The hospital also has an obligation to provide education on important ethical issues in health care to caregivers, care recipients, and the community.

RI.1.1.7 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient to be informed of any human experimentation or other research/educational projects affecting his/her care or treatment;

Intent of RI.1.1.7

The patient has the right to know of any experimental, research, or educational activities involved in his/her treatment: the patient also has the right to refuse to participate in any such activity.

RI.1.1.8 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient, within the limits of law, to personal privacy and confidentiality of information; and

RI.1.1.8.1 The patient and/or the patient's legally designated representative has access to the information contained in the patient's medical record, within the limits of the law.

Intent of RI.1.1.8 and RI.1.1.8.1

The patient has the following rights:

• To be interviewed, examined, and treated in surroundings designed to give reasonable visual and auditory privacy;
• To have access to his/her medical record and to have his/her medical record read only by individuals directly involved in his/her care, or by individuals monitoring the quality of the patient's care, or by individuals authorized by law or regulation (other individuals may read the medical record only with the patient's written consent or that of a legally authorized or designated representative); and
• To request a transfer to a different room if another patient or a visitor in the room is unreasonably disturbing him/her and if another room equally suitable for his/her care needs is available.

RI.1.1.9 [Organizational policies and procedures describe the mechanisms by which the following rights are protected and exercised:] The right of the patient's guardian, next of kin, or a legally authorized responsible person to exercise, to the extent permitted by law, the rights delineated on behalf of the patient if the patient has been adjudicated incompetent in accordance with the law, is found by his/her physician to be medically incapable of understanding the proposed treatment or procedure, is unable to communicate his/her wishes regarding treatment, or is a minor.

Intent of RI.1.1.9

Although the patient is recognized as having the right to participate in his/her care and treatment to the fullest extent possible, there are circumstances under which the patient may be unable to do so. In these situations, the patient's rights are to be exercised by the patient's designated representative or other legally authorized person.

RI.2 There are hospital-wide policies on the withholding of resuscitative services from patients and the forgoing or withdrawing of life-sustaining treatment.

Intent of RI.2

No single set of policies can anticipate the varied situations in which the difficult decisions about withholding resuscitative services or forgoing or withdrawing life-sustaining treatment will need to be made. However, organizations can develop the framework for a decision-making process. Such a framework would include policies designed to assist the organization in identifying its position on the initiation of resuscitative services and the use and removal of life-sustaining treatment. Policies of this nature need to conform to the legal requirements of the organization's jurisdiction.

RI.2.1 The policies are developed in consultation with the medical staff, nursing staff, and other appropriate bodies and are adopted by the medical staff and approved by the governing body.

Intent of RI.2.1

Organizational policies that provide a framework for the decision-making process for withholding resuscitative services or forgoing or withdrawing life-sustaining treatment offer guidance to health professionals on the ethical and legal issues involved in such decisions and decrease the uncertainty about the practices permitted by the organization. It is vital that the policies guiding such decisions be formally adopted by the organization's medical staff and approved by the governing body in order to assure that the process is consistent and that there is accountability for the decisions made.

RI.2.2 The policies describe

RI.2.2.1 the mechanism(s) for reaching decisions about the withholding of resuscitative services from individual patients or forgoing or withdrawing of life-sustaining treatment;

RI.2.2.2 the mechanism(s) for resolving conflicts in decision making, should they arise; and

RI.2.2.3 the roles of physicians and, when applicable, of nursing personnel, other appropriate staff, and family members in decisions to withhold resuscitative services or forgo or withdraw life-sustaining treatment.

Intent of RI.2.2 through RI.2.2.3

Organizational policies regarding the withholding of resuscitative services or the forgoing or withdrawing of lifesustaining treatment outline a process for reaching such decisions. This process protects the decision-making rights of the patient or his/her designated representative; decreases staff uncertainty about practices permitted by the organization; clarifies the roles and duties, and therefore the accountability, of health professionals; and reduces arbitrary decision-making procedures.

RI.2.3 The policies include provisions designed to assure that the rights of patients are respected.

Intent of RI.2.3

Organizational policies regarding the withholding of resuscitative services or the forgoing or withdrawing of lifesustaining treatment empower the patient or designated representative to make such decisions and assure that such decisions made by a patient or designated representative explicitly affirm the patient's responsibility for such decision making.

RI.2.4 The policies include the requirement that appropriate orders be written by the physician primarily responsible for the patient and that documentation be made in the patient's medical record if life-sustaining treatment is to be withdrawn or resuscitative services are to be withheld.

Intent of RI.2.4

Decisions regarding the withholding of resuscitative services or the withdrawal of life-sustaining treatment are communicated to all health professionals involved in the patient's treatment to assure that the decision is implemented.

NOTE: This does not mean that for all deaths in which resuscitative services were not utilized there must be an order to withhold resuscitative services.

RI.2.5 The policies address the use of advance directives in patient care to the extent permitted by law.

Intent of RI.2.5

The organization is expected to use any advance directives prepared by the patient and known to the organization in the decision-making process surrounding the consideration of the withholding of resuscitative services or the initiation or withdrawal of life-sustaining treatment, to the extent permitted by law and supported by the organization's mission and philosophy.

Patient Rights

Definition
Purpose
Description
Alternatives

Definition

Patient rights encompass legal and ethical issues in the provider-patient relationship, including a person’s right to privacy, the right to quality medical care without prejudice, the right to make informed decisions about care and treatment options, and the right to refuse treatment.

Purpose

The purpose of delineating patient rights is to ensure the ethical treatment of persons receiving medical or other professional health care services. Without exception, all persons in all settings are entitled to receive ethical treatment.

Description

Many issues comprise the rights of patients in the medical system, including a person’s ability to sue a health plan provider; access to emergency and specialty care, diagnostic testing, and prescription medication without prejudice; confidentiality and protection of patient medical information; and continuity of care.

Health care reform led to an emergence of health maintenance organizations (HMOs) and other managed health care plans. The rapid change in medical care moved health care decision making from medical professionals to business entities, a move many consider to be detrimental to the health care industry in general. Establishing a patient’s bill of rights has been the response to this concern. The Bipartisan Patient Protection Act of 2001 has been signed into law.

At issue, besides basic rights of care and privacy, is the education of patients concerning what to expect of their health care facility and its providers. These basic rights include the right to:

• participate in the development and implementation in the plan of care
• be treated with respect and dignity
• be informed about condition, treatment options, and the possible results and side effects of treatment
• refuse treatment in accordance with the law, and receive information about the consequences of refusal
• quality health care without discrimination because of race, creed, gender, religion, national origin, or source of payment
• privacy and confidentiality, which includes access to medical records upon request
• personal safety
• know the identity of the person treating the patient, as well as any relationship between professionals and agencies involved in the treatment
• informed consent for all procedures
• information, including the medical records by the patient or by the patient’s legally authorized representative and hospital charges, except for Medicaid and general assistance
• consultation and communication
• complain or compliment without the fear of retaliation or compromise of access or quality of care

Patients are expected to meet a fair share of responsibility by following the plan of care, providing complete and accurate health information, and communicating comprehension of instructions on procedures and treatment. The patient is further responsible for consequences of refusal of treatment, of not following the rules and regulations of a hospital, and of not being considerate of others’ rights. The patient is also responsible for providing assurance that financial obligations of care are met.

The American Hospital Association provides an informal bill of rights for patients who are hospitalized, which informs patients that they have the right to refuse any procedure or medication that is prescribed, and that states that full information should be provided by the attending physician if the patient has expressed doubts or concerns.

Persons United Limiting Substandards and Errors in Health Care (PULSE), a non-profit organization concerned with patient education and improving communication within the health care system, encourages the partnership of health care professionals and patients. A patient who is educated about his or her own medical condition can work together with health care providers regarding treatment decisions.

New federal privacy rules, beyond the proposed patient bill of rights, give patients additional control over private medical information. Patients have the right to examine their own medical records and to amend them if necessary. In practice, medical personnel have often been reluctant to part with patient records, even when requested by the patients themselves. While health care providers and patients assume that medical records are private, the widespread use of computer transmissions opens the potential for seriously compromising patient confidentiality. Regulations recently imposed by the federal government are aimed at protecting patient records by creating limits on the methods in which medical information is shared. Direct authorization from a patient must be gained before information may be released. Criminal and civil penalties may be imposed for a privacy violation. Intentional disclosure of private information can bring a $50,000 fine and a one-year prison term. Penalties for selling medical information are higher. These rules became enforceable in 2003.

Alternatives

Not all individuals or organizations agree with the new regulations. Some complain that they are too restrictive, while others maintain that they are not restrictive enough. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) cites complexity and cost factors as major problems, and that the full extent of the impact caused by the ruling was not adequately considered when it passed in 2003. The government estimated that it will cost taxpayers $17.6 billion over 10 years to comply with the privacy regulations. Critics of the regulations imply that the cost will be more than triple the estimate, and that billable hours for attorneys specializing in the complexities of the regulations will skyrocket, thus resulting in even higher costs of patient care.

Resources

BOOKS

Annas, G. The Rights of Patients: The Authoritative ACLUGuide to the Rights of Patients. 3rd ed. New York: NewYork University Press, 2004.

Biegbeder, Y. International Public Health: Patients’ Rights Vs. the Protection of Patents. 3rd ed. London: Ashgate Publishing, 2004.

Bondeson, W., and J. Jones. The Ethics of Managed Care: Professional Integrity and Patient Rights. New York: Springer, 2002.

Colby, W. Unplugged: Reclaiming Our Right to Die in America. Chicago: AMACOM/American Management Association, 2007.

PERIODICALS

Ackerman, M. J. “The personal health record.” Journal of Medical Practice Management 23, no. 2 (2007): 84–85.

Applebaum, P. S. “Clinical practice. Assessment of patients’ competence to consent to treatment.” New England Journal of Medicine 357, no. 18 (2007): 1834–1840.

Barash, C. I. “Threats to privacy protection.” Science 318, no. 5838 (2007): 913–914.

Campbell, B., H. Thompson, J. Slater, C. Coward, K. Wyatt, and K. Sweeney. “Extracting information from hospital records: what patients think about consent.” Quality and Safety in Health Care 16, no. 6 (2007): 404–408.

Haque, O. S., and H. Bursztajn. “Decision-making capacity, memory and informed consent, and judgment at the boundaries of the self.” Journal of Clinical Ethics 18, no. 3 (2007): 256–261.

Mitka, M. “Aiding emergency research aim of report on exceptions to informed consent.” Journal of the American Medical Association 298, no. 22 (2007): 2608–2609.

ORGANIZATIONS

American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (913) 906-6000. E-mail: <[email protected]>. http://www.aafp.org.

American College of Physicians. 190 N Independence Mall West, Philadelphia, PA 19106-1572. (800) 523-1546, x2600, or (215) 351-2600. http://www.acponline.org.

American Medical Association. 515 N. State Street, Chicago, IL 60610. (312) 464-5000. http://www.ama-assn.org.

National Patient Advocate Foundation, 725 15th St. NW, 10th Floor, Washington, DC 20005. Phone: (202) 347-8009, Fax: (202) 347-5579. http://www.npaf.org.

OTHER

American Cancer Society. Information about Patient Rights. 2007 [cited December 28, 2007]. http://www.cancer.org/docroot/MIT/content/MIT_3_2_Patients_Bill_Of_Rights.asp.

American Psychological Association. Information about Patient Rights. 2007 [cited December 28, 2007]. http://www.apa.org/practice/senate_compromises.html.

National Association for Home Care. Information about Patient Rights. 2007 [cited December 28, 2007]. http://www.nahc.org/Consumer/wamraap.html.

National Institute of Health. Information about Patient Rights. 2007 [cited December 28, 2007]. http://clinicalcenter.nih.gov/participate/patientinfo/legal/bill_of_rights.shtml.

National Library of Medicine. Information about Patient Rights. 2007 [cited December 28, 2007]. http://www.nlm.nih.gov/medlineplus/patientrights.html.

Persons United Limiting Substandards and Errors in Health Care (P.U.L.S.E.). Information about Patent Confidentiality. 2007 [cited December 28, 2007]. http://www.pulseamerica.org/.

Stanford University. Information about Patent Confidentiality. 2007 [cited December 28, 2007]. http://www.stanford.edu/class/siw198q/websites/HearingMar01/bill.html.

L. Fleming Fallon, Jr, MD, DrPH

PCA seePatient-controlled analgesia

PCNL seeNephrolithotomy, percutaneous

PCV seeHematocrit

Patient rights

Definition

Patient rights encompass legal and ethical issues in the provider-patient relationship, including a person's right to privacy, the right to quality medical care without prejudice, the right to make informed decisions about care and treatment options, and the right to refuse treatment.

Purpose

The purpose of delineating patient rights is to ensure the ethical treatment of persons receiving medical or other professional health care services. Without exception, all persons in all settings are entitled to receive ethical treatment.

Description

Many issues comprise the rights of patients in the medical system, including a person's ability to sue a health plan provider; access to emergency and specialty care, diagnostic testing, and prescription medication without prejudice; confidentiality and protection of patient medical information; and continuity of care.

Health care reform led to an emergence of health maintenance organizations (HMOs) and other managed health care plans. The rapid change in medical care moved health care decision making from medical professionals to business entities, a move many consider to be detrimental to the health care industry in general. Establishing a patient's bill of rights has been the response to this concern. The Bipartisan Patient Protection Act of 2001 has been debated and passed by the U.S. Senate and the U.S. House of Representatives and signed into law.

At issue, besides basic rights of care and privacy, is the education of patients concerning what to expect of their health care facility and its providers. These basic rights include the right to:

• participate in the development and implementation in the plan of care
• be treated with respect and dignity
• be informed about condition, treatment options, and the possible results and side effects of treatment
• refuse treatment in accordance with the law, and receive information about the consequences of refusal
• quality health care without discrimination because of race, creed, gender, religion, national origin, or source of payment
• privacy and confidentiality, which includes access to medical records upon request
• personal safety
• know the identity of the person treating the patient, as well as any relationship between professionals and agencies involved in the treatment
• informed consent for all procedures
• information, including the medical records by the patient or by the patient's legally authorized representative and hospital charges, except for Medicaid and general assistance
• consultation and communication
• complain or compliment without the fear of retaliation or compromise of access or quality of care

The patient is also expected to meet a fair share of responsibility by following the plan of care, providing complete and accurate health information, and communicating comprehension of instructions on procedures and treatment. The patient is further responsible for consequences of refusal of treatment, of not following the rules and regulations of a hospital, and of not being considerate of others' rights. The patient is also responsible for providing assurance that financial obligations of care are met.

The American Hospital Association provides an informal bill of rights for patients who are hospitalized, which informs patients that they have the right to refuse any procedure or medication that is prescribed, and that states that full information should be provided by the attending physician if the patient has expressed doubts or concerns.

Persons United Limiting Substandards and Errors in Health Care (PULSE), a non-profit organization concerned with patient education and improving communication within the health care system, encourages the partnership of health care professionals and patients. A patient who is educated about his or her own medical condition can work together with health care providers regarding treatment decisions.

New federal privacy rules, beyond the proposed patient bill of rights, give patients additional control over private medical information. Patients have the right to examine their own medical records and to amend them if necessary. In practice, medical personnel have often been reluctant to part with patient records, even when requested by the patients themselves. While health care providers and patients assume that medical records are private, the widespread use of computer transmissions opens the potential for seriously compromising patient confidentiality . Regulations recently imposed by the federal government are aimed at protecting patient records by creating limits on the methods in which medical information is shared. Direct authorization from a patient must be gained before information may be released. Criminal and civil penalties may be imposed for a privacy violation. Intentional disclosure of private information can bring a $50,000 fine and a one-year prison term. Penalties for selling medical information are higher. These rules became enforceable in February 2003.

Alternatives

Not all individuals or organizations agree with the new regulations. Some complain that they are too restrictive, while others maintain that they are not restrictive enough. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) cites complexity and cost factors as major problems, and that the full extent of the impact caused by the ruling was not adequately considered when it passed in 2003. Government estimates are that it will cost taxpayers $17.6 billion over 10 years to comply with the privacy regulations. Critics of the regulations imply that the cost will be more than triple the estimate, and that billable hours for attorneys specializing in the complexities of the regulations will skyrocket, thus resulting in even higher costs of patient care.

See also Do not resuscitate order; Medical charts; Patient confidentiality.

Resources

books

Radford, Roger. Informed Consent. Booklocker.com, 2002.

periodicals

Cole, A., and K. Oxtoby. "Patient Power." Nursing Times 98, no.51 (2002): 22–25.

Landrum, S. E. "Patients' Rights and Responsibilities." Journal of the Arkansas Medical Society 99, no.7 (2003): 222–223.

Rosenbaum, S. "Managed Care and Patients' Rights." Journal of the American Medical Association 289, no.7 (2003): 906–907.

Sugarman, J. "Missing the Informed in Consent." Anesthesia and Analgesia 96, no.2 (2003): 319–320.

organizations

American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (913) 906-6000. E-mail: <[email protected]>. <http://www.aafp.org>.

American College of Physicians. 190 N Independence Mall West, Philadelphia, PA 19106-1572. (800) 523-1546, x2600, or (215) 351-2600. <http://www.acponline.org>.

American Medical Association. 515 N. State Street, Chicago, IL 60610. (312) 464-5000. <http://www.ama-assn.org>.

National Patient Advocate Foundation. 753 Thimble Shoals Blvd, Suite A, Newport News, VA 23606. 800-532-5274. E-mail: <[email protected]>. <http://www.npaf.org>.

other

American Psychological Association. [cited March 2, 2003] <http://www.apa.org/practice/senate_compromises.html>.

Persons United Limiting Substandards and Errors in Health Care (P.U.L.S.E.). [cited March 2, 2003] <//www.pulseamerica.org/>.

Stanford University. [cited March 2, 2003] <http://www.stanford.edu/class/siw198q/websites/HearingMar01/bill.html>.

U.S. House or Representatives, Democratic Staff or the Energy and Commerce Committee. [cited March 2, 2003. <http://www.house.gov/commerce_democrats/pbor/107pborsummary.htm>.

L. Fleming Fallon, Jr, MD, DrPH