Patients' Rights(redirected from Medical Experimentation)
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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, 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.
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 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.
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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.