The patients' "rights" that most hospitals recognize don't go as far as many advocates of such rights believe they should.
The "Patients' Bill of Rights," reprinted here, was adopted by the American Hospital Association (AHA) in 1973. Some 80 percent of the nation's hospitals have now adopted or modified it.
Not all hospitals, however, give a copy to every patient. Some post them only in the lobby, where most patients don't go. Some don't post them at all.
Some of the rights are stated in legalistic or murky language. And there are other important rights too that patients have, or should have.
The AHA rights were a landmark nonetheless. Where a hospital has adopted these or similar rights, you should have a clear legal right to them. You have a legal right to several whether or not a hospital has approved them. Most apply whether you are in the hospital for days or there as an outpatient for an hour.
Here are the AHA rights in italics, plus other suggestions, including excerpts from a "model bill of rights" (written by George J. Annas, Boston University professor of health law, for the American Civil Liberties Union handbook, "The Rights of Hospital Patients," Avon, 1975):
1. THE PATIENT has the right to considerate and respectful care.
This well might read "good care" in addition. A Pennsylvania Insurance Department "Citizens' Bill of Hospital Rights" says: "No one can expect perfection. However, the public has a right to expect a system which continuously strives to deliver high quality care with a minimum of error," and "frank disclosure to the patient" when poor care or malpractice is discovered.
2. THE PATIENT has the right to obtain from his physician complete current information concerning his diagnosis, treatment and prognosis, in terms the patient can be reasonably expected to understand. When it is not medically advisable to give such information to the patient, the information should be made available to an appropriate person in his behalf.
He has the right to know by name the physician responsible for coordinating his care.
3. THE PATIENT has the right to receive from his physician information necessary to give informed consent prior to the start of any procedure and/or treatment. Except in emergencies, such information for informed consent should include but not necessarily be limited to the specific procedure and/or treatment, the medically significant risks involved and the probable duration of incapacitation.
Where medically significant alternatives for care or treatment exist, or when the patient requests information concerning medical alternatives, the patient has the right to such information.
The patient also has the right to know the name of the person responsible for procedures and/or treatment.
Some of these are legal rights, Annas says. These include your rights to: (1) "informed participation in all decisions . . . ," (2) "a clear, complete and accurate evaluation" of your condition and prognosis before you are asked to consent to anything and (3) "a clear, concise explanation" of all procedures in lay terms, including any risk of death or serious side effects and the probability of success.
Annas would also add the right to know which physician is "responsible" for your care, and the names, expertise and responsibilities of everyone else involved in your care. You may be seen by staff physicians, residents (or "house officers") and even by medical students (often called "clerks"), who are there to learn, not take responsibility. All should introduce themselves and explain why they are there. You have a right to refuse to be examined by any of them, though it is usually in your best interest not to refuse.
Annas would also add "the right of a patient to discuss his condition with a consultant."
The state of Minnesota has enacted a patient's bill of rights into law. It says patients shall have the right to participate in planning their care and shall be given their doctors' addresses and phone numbers.
I would add as another right: "The patient has a right to be heard."
4. THE PATIENT has the right to refuse treatment to the extent permitted by law, and to be informed of the medical consequences of his action.
The rights "to refuse any" drug, test, procedure or treatment and "to leave the health care facility regardless of physical condition or financial status" -- that is, whether or not you owe any money -- are legal rights, Annas says. But governments may enact exceptions. For example, the federal "Baby Doe" regulations do not permit parents to deny treatment to deformed babies.
A consent form may contain things your doctor didn't tell you about. It may be handed to you by a technician who can't explain it to your satisfaction. You have the right to refuse any procedure until you get a better explanation. You may cross out anything you don't agree to on a consent form, though the hospital may then refuse to go ahead with that procedure.
5. THE PATIENT has the right to every consideration of his privacy concerning his own medical care program. Case discussion, consultation, examination and treatment are confidential and should be conducted discreetly. Those not directly involved in his care must have the permission of the patient to be present.
6. THE PATIENT has the right to expect that all communications and records pertaining to his care should be treated as confidential.
The rights to personal privacy and privacy of information are also legal rights, Annas says.
If you think too many people can see or hear you as you are being examined or treated, you have a right to ask for a more private setting, or ask that only those helping, not just watching, stay in the room.
The right to privacy should include the right to be moved to another room -- often possible -- if you're exposed to unwelcome cigarette smoke, noise or other disturbances.
You should have the right to examine your records and chart any time, Annas believes, and to have "a complete copy" of all information at the end of the stay.
7. THE PATIENT has the right to expect that within its capacity a hospital must make reasonable response to the request of a patient for services. The hospital must provide evaluation, service and/or referral as indicated by the urgency of the case.
When medically permissible a patient may be transferred to another facility only after he has received complete information and explanation concerning the needs for and alternatives to such a transfer. The institution to which the patient is to be transferred must first have accepted the patient for transfer.
These clauses deal with a hospital's right -- or lack of right -- to refuse to treat you, and to transfer you to a public hospital if you can't pay. No hospital may do so if your life or health would be imperiled by lack of prompt care, or by a transfer.
Annas says: "The patient has a legal right to prompt attention, especially in an emergency situation." He believes no patient should "be transferred to another facility unless he . . . has agreed."
The preamble to the standards set by the Joint Commission on Accreditation of Hospitals plainly says "no person should be denied impartial access" to medically indicated treatment on the basis of "the nature of the source of payment."
8. THE PATIENT has the right to obtain information as to any relationship of his hospital to other health care and educational institutions insofar as his care is concerned. The patient has the right to obtain information as to the existence of any professional relationships among individuals, by name, who are treating him.
This means you have a right to know if a hospital is owned by a for-profit corporation, for example, or allied to any other medical institutions. Many of the best hospitals are part of some alliance.
You also have a right to know whether any doctors are partners or members of the same clinic or any other group -- in case you want a completely independent consultation, for example.
9. THE PATIENT has the right to be advised if the hospital proposes to engage in or perform human experimentation affecting his care or treatment. The patient has the right to refuse to participate in such research projects.
Annas says you should also have a right to know whether alternative treatments are available. He says you have "a legal right not to have any test or procedure designed for educational purposes," rather than your benefit.
10. THE PATIENT has the right to expect reasonable continuity of care. He has the right to know in advance what appointment times and physicians are available and where.
The patient has the right to expect that the hospital will provide a mechanism whereby he is informed by his physician or a delegate of the physician of the patient's continuing health care requirements following discharge.
Annas would add rights "to be notified of discharge at least one day" ahead, and "to demand a consultation by an expert" on whether discharge is appropriate.
Many hospitals now have "discharge planners" or a planning process to help patients adjust or get further care; this should be a right.
11. THE PATIENT has the right to examine and receive an explanation of his bill regardless of source of payment.
You have a legal right, Annas says, to privacy about "source of payment" -- whether insurance or public funds or none -- and to "access to the highest degree of care without regard to source of payment."
You may question any charges and, if unable to pay, try to negotiate the charges or arrange delayed payment. You should be informed in advance if anything is not covered by insurance, or if your insurance coverage will soon run out. You should also, Annas says, have a right to counseling to help you get financial help from public or private sources.
12. THE PATIENT has the right to know what hospital rules and regulations apply to his conduct as a patient.
Annas believes parents should have a clear right to stay with their children, and relatives to stay with terminally ill patients, 24 hours daily.
He believes there should be a stated right to 24-hour access to a patient's right advocate whose duty it is to help inform you of your rights and see that you get them.
Minnesota goes one step in this direction: it says patients must be told there are legal rights for their protection -- and given a copy.