The health care rights of patients have been the subject of much public debate and legislative action in the latter half of the 20th century. The fundamental right to quality medical care and compensation for medical malpractice, the right to informed consent, and the right to health care privacy, are all protected under United States congressional law. While these and other laws ensure many rights for medical patients, the changing nature of medical knowledge and care also ensures the continued need to regulate the relationships among patients, care-givers, and care-giving institutions. But quite apart fromany legal issues, the recognition that patients have rights can transform thedoctor-patient relationship from an authoritative and paternalistic one intoa true partnership, with the result that the quality of medical care is enhanced.
Among one's rights as a patient is the right to make decisions about the course of treatment received, as well as to know about all reasonable alternativetreatments. One also has the right, as a competent adult, to refuse any proposed treatment, even if doing so may mean that one will become sicker or evendie.
No medical provider can treat or even touch a prospective patient until thatperson has made a voluntary decision to accept treatment; such a decision isreferred to as informed consent. In order to help the patient decide whetherto provide this consent, the physician is obligated to provide at least the following information:
- Descriptions of the recommended treatment or procedure and the associated risks and benefits, with special emphasis on the risk of death or serious disability.
- Descriptions of alternative treatments and procedures, and the associated risks.
- The likely results iftreatment is refused.
- The probability (and definition) of success.
- Any major problems anticipated in recuperation, including the expectedlength of time before normal activities can be resumed.
- Any information usually provided to patients in the same or similar situation, such as thepercentage of the treatment that the patient's health plan will cover.
A key ingredient in the concept of informed consent is that the consent mustbe voluntary. This means the patient must not be overly medicated, intoxicated, under threat by the physician, or under extreme duress. As long as the patient understands the information needed to give an informed consent for a proposed treatment, the patient is considered competent to make the decision. The only way anyone can take away a patient's right to provide informed consentis by having the patient declared incompetent, and this must be done in a courtroom.
Although very few treatments actually require a patient to sign a consent form (the most common exception being when a patient agrees to be a research subject), doctors and hospitals usually ask the patient to sign forms consentingto treatment. In order to be useful as evidence of the patient's informed consent, the written form must describe the proposed procedure, the risks and benefits associated with the procedure, any alternative procedures and their risks, the risks of nontreatment, success rates, and any problems anticipatedin recuperating from the procedure. A patient may add new requirements or cross out points disagreed with on the form, although the treating physician maythen be unwilling to perform the procedure if he or she fees that the limitations the patient is adding to the consent form are too strict to allow the procedure to be conducted safely.
The patient can withdraw his or her consent at any time before treatment. Todo so, the patient should first inform the treating physician of the decision. Then the patient should either obtain and destroy the original consent form, or prepare a non-consent form with the date and time of day that consent iswithdrawn.
A patient's rights in situations of medical emergency are also well defined.Emergencies are defined as any medical conditions that are likely to result in death, disability, or serious illness if not attended to very quickly. If an individual is in medical emergency or in labor, any hospital with emergencyfacilities must treat that person if it can. If it cannot, it must refer theindividual elsewhere.
If the hospital emergency department determines that a patient is in medicalemergency, the law and medical ethics requires that a physician provide treatment or find someone who can. Conditions that require the immediate attentionof a doctor include
- heavy bleeding
- Heart stoppage
- Breathing stoppage
- Profound shock
- Severe head injuries
- Sudden and complete changes in personality
- Allergic responses
In most states, the patient has a right to see and copy his or her medical records. The patient may need this information to decide on treatment, to determine when and if to change physicians or health plans, and to prepare for thefuture. It is inappropriate for a patient's medical records to contain personal criticisms, such as "This patient is an alcoholic." Such statements unfairly color the attitudes of others who read the records, and they can lead tohealth providers concealing records from the patient out of fear of embarrassing the person who wrote the remarks. Although physicians and health care facilities can charge the patient a reasonable fee for making a copy of the patient's medical records, this fee should not exceed the actual cost of duplication.
All health care providers have a legal and ethical duty to maintain the confidentiality of a patient's records. The Hippocratic Oath, the American MedicalAssociation Principles of Ethics, and the American Nurses Association Code all recognize the need to safeguard patient confidences. Nevertheless, it is not realistic to expect that all medical records will remain secret. Even on aneed-to-know basis, many individuals will have access to a patient's medicalrecords. For this reason, it is important that extremely sensitive information about the patient be safeguarded. In a hospital setting, such informationas a psychiatric or HIV diagnosis could rapidly spread and damage the way thestaff treats the patient. Such information, if leaked, could also affect thepatient's ability to obtain housing, employment, and insurance. A doctor's violation of patient confidentiality could be grounds for a malpractice suit,if the breach caused harm to the patient.
One of the first comprehensive statements of a patient's rights was drafted by the American Hospital Association in 1973. Today it must be posted in the corridors of every hospital facility the association has accredited and includes twelve basic rights:
1. A patient has the right to considerate and respectful care.
2. A patient has the right to receive complete information from a physician about a patient's diagnosis, treatment plan, and prognosis.
3. A patient has the right to obtain information about the specific nature ofa proposed treatment or procedure, a disclosure of the risks involved, and information about medical alternatives.
4. A patient has the right to refuse treatment and to be informed of the medical consequences.
5. A patient has the right to privacy during discussion of one's medical condition and while undergoing medical care.
6. A patient has the right to expect all records related to medical care willbe kept confidential.
7. A patient has the right to expect that reasonable efforts will be made torespond to the patient's request for services, and that the patient will notbe transferred to another medical facility without advising the patient of the need to be transferred and without ensuring that the new facility will accept transfer of the patient.
7. A patient has the right to obtain information about the relationships amongst care providers in the hospital and related medical and educational institutions. This is designed to protect patients from conflicting interests thatmight affect quality of care.
8. A patient has the right to obtain information about human experimentationand research that might affect treatment or care, and to refuse to take partin such experimentation and research.
9. A patient has the right to expect reasonable continuity of care. This is meant to assure the patient that, for example, diagnoses will be followed up with continued treatment.
10. A patient has the right to examine and receive an explanation of the hospital bill.
11. A patient has the right to be informed of hospital rules and regulationsthat apply to patient conduct. This statement of rights provides benefit to both patient and hospital.
12. Though the quality of resolution varies widely, most hospitals have grievance committees that will hear complaints and staff representatives that actas patient advocates when a right is called into question.
Since the Hospital Patients Bill of Rights was drafted in 1973, a number of important laws related to patient's rights have been enacted by state and federal government. The Nursing Home Reform Act, passed by Congress in 1987 and put into effect in 1990, guarantees the standard of care in nursing home facilities, regulating aspects of care such as the provision of nutritious food, the respectful and courteous treatment of patients, and the quality of rehabilitation services. The Federal Emergency Medical Treatment and Active Labor Act of 1989, and similar state laws, protect patients who are in need of emergency care from being turned away from a hospital emergency room and or being denied treatment. In 1991, Congress passed the Patient Self-Determination Act,providing greater personal control over the medical care given at the end oflife. The Federal Privacy Act of 1974 provided loose guarantees of protection for medical records. More recently additional laws have been passed to ensure the confidentiality of medical records. Bills to guarantee patients rightsin Health Maintenance Organizations were under congressional review as the calendar year 1999 drew to a close. As the 21st century is approached and medical procedures become more complex and costly, as infectious diseases and genetic conditions become easier to diagnose, and the ability to sustain and prolong life continues to improve, the need for new legislation will be even more pressing.