Patients' Rights in Hospitals
The medical care system is large, complicated, overwhelming, and bewildering. Everyone who is a patient in the system has a right to have questions answered. Questions about medical care are best addressed to the medical care providers—the nurse or midlevel practitioner or physician.
Questions about the medical system itself are best addressed to a patient representative (see above), a patient advocate now in most hospitals and in many of the larger clinics.People who become patients in the medical care system have specific rights they should be aware of. The following is an adaptation and amplification of the “Patient’s Bill of Rights” offered at the Johns Hopkins Hospital in Baltimore, Maryland.
1. The person should expect medical care regardless of race, color, religion, national origin, source of pay, or medical condition. Specifically, no one can be denied care because of HIV infection. Early in the AIDS epidemic, some hospitals and clinics avoided providing AIDS care, on the grounds that treating people with AIDS might deter other people from using that hospital or clinic. Much of this image problem is now in the past, but people with HIV infection should nonetheless be aware of their right to medical care in hospitals.
2. The person should expect to be treated with respect. He or she should be addressed by proper names and not be treated with undue familiarity. He or she has the right to an appropriate response to questions.
3. People should expect privacy and confidentiality in all aspects of their care. This is an especially sensitive issue for people with HIV infection. Privacy and confidentiality have some limits, however. Important diagnoses such as HIV infection or the complications of HIV infection cannot be excluded from the medical record. Moreover, these medical records are available to those who have a justified need to see them, including physicians involved in the person’s care, insurance companies, Medicaid/Medicare, managed care organizations or HMOs, and public health officials.
Furthermore, all cases of AIDS are reported, by law, to the Centers for Disease Control and Prevention; and many states require that blood tests that are positive for HIV also be reported to state health departments. Although this is a sensitive issue, we are not aware of a breach of confidentiality that has ever occurred as a result of such reports. And hospitals take seriously their responsibility to protect medical records from people who have no need to see them (see chapter 9 and Appendix B, “Understanding Tests for HIV”). Insurance companies have a justified right to this information and may use it to deny subsequent policies.4. People should know the physician who is responsible for their care. They have the right to participate in decisions involving their medical care. These decisions should be based on a clear explanation of the medical condition, the proposed procedures, the proposed treatments, and the risks involved.
5. People should expect efficient and courteous attention from all hospital personnel. They should also respect the possibility that other patients’ needs might be more urgent.
6. People have the right to be interviewed and examined in surroundings that assure privacy. They also have the right to know the role of any observer and to ask observers to leave. People also have the right to restrict visitors and can do this simply by notifying the nurse or physician responsible for their care.
7. Mentally competent people have the right to reject any form of proposed treatment or diagnostic test. In particular, many people have profound feelings about resuscitation and life support measures like breathing machines or artificial kidney machines. Uncomfortable as this subject is, decisions about life support measures should not be left until the person is too ill to participate in a rational discussion. Preferences about such issues should be discussed candidly, at the appropriate time, and should be documented in the medical record, in a living will, and by assigning a durable power of attorney for health care.
This empowerment for life decisions is now mandated by the Patient Self-Determination Act (see chapter 9). In the event that there are no such provisions, and the person is not capable of making medical decisions, this role is entrusted to a hierarchy of others, starting with a court-appointed legal guardian, then spouse, child over eighteen years, parent, or sibling (brother or sister), in that order (see chapter 9).8. People may be asked to participate in research projects called clinical trials (see chapter 8, under “Experimental Drugs and Clinical Trials”). Clinical trials can involve people only with their written consent and with the approval of the person’s physician. Furthermore, once involved in a clinical trial, the person has the right to discontinue participation at any time.
9. People have the right to unrestricted communication with anyone. This includes physicians, lawyers, clergy, and representatives of AIDS-advocacy groups.
10. People may leave the hospital against the advice of their doctors at any time. They will usually need to sign a form entitled “Discharge against Medical Advice.” The implication of the form is that the physician will not be responsible for any harm that results from this action. In addition, the refusal of care by the person or the person’s legally authorized representative may, upon appropriate notice, result in termination of the patient-physician relationship. The exception to the discharging-against-advice right is that some states have laws requiring people with certain contagious diseases who are considered potentially harmful to others to remain in the hospital. This may occur with tuberculosis, which is often difficult to control in patients with HIV infection and which is a public health risk. It is conceivable that this ruling could also be applied to people with HIV infection who are known to behave irresponsibly. We are not aware that this ruling has ever been applied in this way.
11. People may not be transferred from one facility to another unless they receive a complete explanation of the need for the transfer and the alternatives to the transfer, and unless the receiving facility accepts the transfer.
People who desire transfer to another hospital should notify their physicians, who will make the arrangements. Almost all transfers between hospitals are based on discussions between physicians, usually the physicians-of-record of the two facilities. The admitting office of the receiving hospital must also be involved to assure that the source of medical insurance complies with their requirements.12. People who are discharged from the hospital have a right to information regarding continuing health care requirements, including recommendations for medications, nutrition, activity, return to work, and follow-up medical evaluations.
13. The person has the right to inquire about any charges by the hospital, the clinic, or a physician, and to be presented with various options for payment.