The Patient's Bill of Rights was first adopted by the American Hospital Association in 1973 and revised in October 1992. Patient rights were developed with the expectation that hospitals and health care institutions would support these rights in the interest of delivering effective patient care. The American Hospital Association encourages institutions to translate and/or simplify the bill of rights to meet the needs of their specific patient populations and to make patient rights and responsibilities understandable to patients and their families. According to the American Hospital Association, a patient's rights can be exercised on this or her behalf by a designated surrogate or proxy decision_maker if the patient lacks decision_making capacity, is legally incompetent, or is a minor.
**************Bill of Rights***********************
*The patient has the right to considerate and respectful care.
*The patient has the right and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information about his or her diagnosis, treatment, and prognosis.
*Except in emergencies when the patient lacks the ability to make decisions and the need for treatment is urgent, the patient is entitled to a chance to discuss and request information related to the specific procedures and/or treatments available, the risks involved, the possible length of recovery, and the medically reasonable alternatives to existing treatments along with their accompanying risks and benefits.
*The patient has the right to know the identity of physicians, nurses, and others involved in his or her care, as well as when those involved are students, residents, or other trainees. The patient also has the right to know the immediate and long_term financial significance of treatment choices insofar as they are known.
*The patient has the right to make decisions about the plan of care before and during the course of treatment and to refuse a recommended treatment or plan of care if it is permitted by law and hospital policy. The patient also has the right to be informed of the medical consequences of this action. In case of such refusal, the patient is still entitled to appropriate care and services that the hospital provides or to be transferred to another hospital. The hospital should notify patients of any policy at the other hospital that might affect patient choice.
*The patient has the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) concerning treatment or designating a surrogate decision_maker and to expect that the hospital will honor that directive as permitted by law and hospital policy.
*Health care institutions must advise the patient of his or her rights under state law and hospital policy to make informed medical choices, must ask if the patient has an advance directive, and must include that information in patient records. The patient has the right to know about any hospital policy that may keep it from carrying out a legally valid advance directive.
*The patient has the right to privacy. Case discussion, consultation, examination, and treatment should be conducted to protect each patient's privacy.
*The patient has the right to expect that all communications and records pertaining to his/her care will be treated confidentially by the hospital, except in cases such as suspected abuse and public health hazards when reporting is permitted or required by law. The patient has the right to expect that the hospital will emphasize confidentiality of this information when it releases it to any other parties entitled to review information in these records.
*The patient has the right to review his or her medical records and to have the information explained or interpreted as necessary, except when restricted by law.
*The patient has the right to expect that, within its capacity and policies, a hospital will make reasonable response to the request of a patient for appropriate and medically indicated care and services. The hospital must provide evaluation, service, and/or referral as indicated by the urgency of the case. When medically appropriate and legally permissible, or when a patient has so requested, a patient may be transferred to another facility. The institution to which the patient is to be transferred must first have accepted the patient for transfer. The patient also must have the benefit of complete information and explanation concerning the need for, risks, benefits, and alternatives to such a transfer.
The patient has the right to ask and be told of the existence of any business relationship among the hospital, educational institutions, other health care providers, and/or payers that may influence the patient's treatment and care.
*The patient has the right to consent to or decline to participate in proposed research studies or human experimentation or to have those studies fully explained before they consent. A patient who declines to participate in research or experimentation is still entitled to the most effective care that the hospital can otherwise provide.
*The patient has the right to expect reasonable continuity of care and to be informed by physicians and other caregivers of available and realistic patient care options when hospital care is no longer appropriate.
*The patient has the right to be informed of hospital policies and practices that relate to patient care treatment, and responsibilities. The patient has the right to be informed of available resources for resolving disputes, grievances, and conflicts, such as ethics committees, patient representatives, or other mechanisms available in the institution. The patient has the right to be informed of the hospital's charges for services and available payment methods.
In other words, if you are aware that anti-depressants are proven useless in treating CFS, you have the legal right to ask for a different treatment. You can legally refuse the anti-depressants and request that the doctor review more current treatment information.
If you provide the doctor with copies of research or names of researchers supporting your claim that there are better treatments, they are not supposed to bully you into taking what they want you to take, nor refuse to consider proven treatments because it's not the treatment they want to give you. They are supposed to take the time to educate themselves to the newer and better treatments that you've told them about. To save having to come back for another appointment (and pay for another appointment), you can take printouts of the research you're relying on so they can look it over. www.Co-Cure.org has a lot of research information about treatments that help and treatments that don't; just search the archives.
If they still refuse to give you the treatments proven to work by researchers, you can contact the American Hospital Association (www.aha.org) for information on how to proceed.
There is absolutely no excuse for any CFS patient to be forced to accept any treatment that has been proven useless (anti-depressants) or dangerous (exercise). It's your health and the final decision is, by law, yours. Any doctor who refuses to consider a reasonable treatment option you suggest as an alternative, any doctor who verbally abuses you for not getting better with his preferred treatment, is in violation of your rights as those rights were determined by the AHA.
3 comments:
Are these real, legal rights, codified in law and which can be brought up in a court of law in times that they or not followed? Or are they instead guidelines created by the medical industry to hopefully get patients what they need and to cover the hospitals butts if someone gets upset? It looks as if these are not real rights like those in the constitution, but rather policy reccomendations, and that they would not hold up in court. Nice ideas that look good but nothing that can be held against the hospital or doctor if not followed as stated.
JoAnn
The previous commenters are correct. These are guidelines, which most hospitals are happy to comply with. When you get down to the nitty-gritty the fact is that while you can provide a doctor with data you may have collected the doctor is under no obligation to follow it. No doctor can be forced to provide treatment that he is unfamilar with, doesn't agree with or simply doesn't want to. And there are no laws on the books to make him do so. An example of this was the use of the weightloss cocktail of fen-fen a few years back. While many doctors did provide it for their patients many would not due to either it not being used long enough or that they simply did not agree with what was known about it. And you remember what happened. So I think it is unlikely to assume a physican's position and rights to offer only treatment they reccomend is going to change any time soon.
My theory is that if your hospital/medical group has given you a copy of the Patient's Bill of Rights, or has it posted somewhere, it then becomes part of their contract with you, which gives you legal rights to enforce that contract.
It can't hurt to contact AHA to complain if your rights under this Bill of Rights have been denied. They may be able to apply pressure from above to get you the best treatment.
In my case, I was not requesting anything that was dangerous or experimental: I was requesting an FDA-approved drug for the same purpose that the drug was approved for, to treat my worst symptom. In the minds of later doctors, it was wholly unreasonable for them to refuse to try it, especially when their preferred treatment made me sicker.
The final decision on whether you want to use a treatment or medication is, by law, the patient's decision. No doctor can force you to go along with what he wants. You can stand up to him and say No. That much *is* law in many places (if not everywhere).
According to Dr. Kent Holtorf, "There has been significant concern by health care organizations and experts that physicians are failing to learn of new information presented in medical journals and lack the ability to translate that information into
treatments for their patients." Surely AHA and AMA would be interested in hearing from patients who are refused reasonable treatments with FDA-approved drugs.
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