Patient Dignity 06: The Fallacy of a Patients' Bill of Rights

Most healthcare providers have a "Patients' Bill of Rights" publicly available. A patient's bill of rights is a list of guarantees for those receiving medical care. It usually takes the form of a non-binding declaration. This means that the "Patients' Bill of Rights" posted by the provider MEANS NOTHING!!! It amounts to nothing more than a piece of advertising.

Typically a patient's bill of rights guarantees patients information, fair treatment, and autonomy over medical decisions, among other rights. In the United States there have been a number of attempts to enshrine a patient's bill of rights in law, including a bill rejected by Congress in 2001.

On June 22, 2010, President Obama announced new interim final regulations, the Patient’s Bill of Rights, that include a set of protections that apply to health coverage starting on or after September 23, 2010, six months after the enactment of the Affordable Care Act. This deals with finances, insurance coverage, it does NOT cover the individual's right to self-determination or modesty issues.

Some Patients' Bill of Rights may include items which are enacted into law (such as "receive emergency care if you need it" which is federally enacted under EMTALA). Just because a Bill of Rights references a binding law, it does not make the Bill of Rights binding.

The State of New York has enacted a Patients' Bill of Rights (which can be seen here:). Again the list is deficient. For example: 

(2) Receive treatment without discrimination as to race, color, religion, sex, national origin, disability, sexual orientation, source of payment, or age.

This does not cover gender. Technically, a provider can refuse a transgender individual. It also does not address modesty issues, filming of procedures, or about medical student participation. The last may be implied under: 

(6) Know the names, positions and functions of any hospital staff involved in your care and refuse their treatment, examination or observation.

But there is no mention of being able to refuse them OR determine who is involved in your care. "This is Bob, he will be filming your rectal exam, and this is Fred, Alice, Mike, Lisa, Joe, Habib, Apu, Roselita; all students who will be practicing on you..." Furthermore, the NY Patients' Bill of Rights only applies to hospitals.

Another (shady) tactic is to have a document called "Patients' Rights and Responsibilities." This attempts to create grounds that you as a patient cannot refuse. Consider the "Patients' Rights and Responsibilities"from the Geisinger Healthcare System (found here:) 

The first line states:

Being a good patient does not mean being a silent one.

Now they are going to tell you how to be a "good patient," as they see a "good patient," and not necessarily a self-determining human being with inalienable rights. It is implied by this (one-sided) agreement that you are giving up rights in exchange for "lesser" rights which they are giving you. Furthermore they do not define what a "good provider" is.

Let's examine some more rights. My commentary in bold type.

 2. A patient has the right, upon request, to be given the name of his attending physician, the names of all other physicians directly participating in his care, and the names and functions of other health care persons having direct contact with the patient. But apparently no right to refuse. What about being told the name of the technician repairing a machine in the operating room while you are having rectal surgery? 
3. A patient has the right to every consideration of his privacy concerning his own medical care program. Case discussion, consultation, examination, and treatment are considered confidential and shall be conducted discreetly. 
5. A patient has the right to know what hospital rules and regulations apply to his conduct as a patient. Rules may require things contrary to the patient's rights.
8. The patient has the right to full information in layman's terms, concerning his diagnosis, treatment, and prognosis, including information about alternative treatments and possible complications. When it is not medically advisable to give such information to the patient, the information shall be given on his behalf to the patient's next of kin or other appropriate person. What is "not medically advisable?" 
11. A patient has the right to refuse drugs, treatment, or procedure offered by the hospital, to the extent permitted by law, and a physician shall inform the patient of the medical consequences of the patient's refusal of drugs, treatment, or procedure. "To the extent permitted by law" means that there is a legal way around this.
13. A patient has the right to medical and nursing services without discrimination based upon race, color, religion, sex, sexual preference, National origin or source of payment. But transgender people can be discriminated against.
15. The hospital shall provide the patient, or patient designee, upon request, access to all information contained in his medical records, unless access is specifically restricted by the attending physician for medical reasons. Like the attending physician made a mistake. Is that a medical reason?
16. The patient has the right to expect good management techniques to be implemented within the hospital considering effective use of the time of the patient and avoid the personal discomfort of the patient. If this applies to modesty issues, GOOD JOB!
23. A patient has the right to participate in the development and implementation of his or her plan of care. Participate, ultimately it is the decision of the physician (see responsibilities below:)
24. A patient or his or her representative (as allowed under Pennsylvania law) has the right to make informed decisions regarding his or her care. The patient's rights include being informed of his or her health status, being involved in care planning and treatment, and being able to request or refuse treatment, in accord with applicable law and regulation. This right must not be construed as a mechanism to demand the provision of treatment or services deemed medically unnecessary or inappropriate.  "Deemed medically unnecessary or inappropriate," like modesty issues!
33. A patient has the right to an environment that preserves dignity and contributes to a positive self image. A patient has the right to be free from mental, physical, sexual and verbal abuse, neglect and exploitation, or harassment. A patient does NOT have the right to have their body covered or modesty issues respected because "we" do not consider that abuse.
38. A patient has a right to have his or her cultural, psychosocial, spiritual and personal values, beliefs and preferences respected. "Respected," (only) NOT followed!
40. A patient has the right, without recrimination, to voice complaints regarding his or her care, to have those complaints reviewed, and, when possible, resolved. Resolved "when possible." We won't be able to get to your issue for another 2 weeks, you have to go through with this as we say, then in 2 weeks we will see if we were right or wrong. 

Now the Responsibilities:

• Help your doctor, nurse, and healthcare support staff in their efforts to care for you by following their instructions and medical orders. Following their orders. I thought the patient was involved with the decision making. Orders like "get undressed now?"
• Accept medical consequences if you do not follow the care, service, or treatment plan provided to you. Consequences like the healthcare system dropping you as a patient?

The Rights Giveth, and the Responsibilities Taketh Away

You think that you are getting something in the "Rights," but the "Responsibilities" nullify or take away those rights. Here are some of the ways to take away "rights," of course remember that it is only what you perceive as rights.

• To follow rules, regulations and policies affecting patient care and conduct.  This subjects you to additional rules (not listed in the rights and responsibilities). Not following these additional rules is also a failure of you following your responsibilities.
• To recognize that a teaching institution has a commitment to the education of future health care professionals. Patients receiving care are a part of this process. This means that you must comply to being examined by students AND not having the right to refuse being examined, observed, and recorded (audio/video). 
• To follow the treatment plan recommended by the health care provider responsible for your care. This includes following the instructions of the other health team members, such as nurses and physical therapists, as they carry out the coordinated plan of care. It is your responsibility to tell your health care provider whether or not you can and want to follow the treatment plan recommended for you. The most effective plan is one in which all participants agree is best and which is carried out exactly.  This means that you can participate in decision making (via rights), the doctor does NOT have to include you in the final decision of the course of treatment. You can refuse the treatment, but then you are at fault for not following the physician's wishes. This nullifies your participation in any decision making.
• Patients should cooperate fully with providers in complying with mutually accepted treatment regimens. Statements like these leave out the actors. Mutually accepted by who? The physicians? Everyone except the patient?
• ...within the capacity of the medical center.  This means what we feel like giving you. If we don't want to give it to, we won't have it.
• Provide accurate and complete information about current health care problems, past illnesses, hospitalizations, medications, and other matters relating to your health. If we ask it, it must be relevant...  
• To refuse treatment. This right must not be construed as a mechanism to demand the provision of treatment or services deemed medically unnecessary or inappropriate. "Deemed medically unnecessary or inappropriate," by us, the hospital. Your level of modesty issues are "medically unnecessary, because if they were we would already accommodate them. 
• In accordance with applicable law and regulation... Means there is a way around this, usually  by interpretation. By then it is too late.
• Patients should pursue lifestyles known to promote positive health results, such as proper diet and nutrition, adequate rest, and regular exercise. Simultaneously, they should avoid behaviors known to be detrimental to one's health, such as smoking, excessive alcohol consumption, and drug abuse. Of course, the hospital determines what they see as a healthy lifestyle. They do not take into account what the patient can AFFORD to do.
• To cooperate with the members of the health care team who provide care to you.  You must comply with them, even if they are violating your rights. 

I want to expand on the last issue a little with an example. This example is based on the NY Presbyterian Hospital forced rectal exam of Brian Persaud:

A patient comes in with a head injury. The attending assumes that the patient lacks capacity, when the patient actually has capacity. The attending attempts to force a rectal exam. The patient being battered, fights back. The physician has the patient charged with assault and battery. 

The "responsibilities" expect the patient to comply, even when the providers are in the wrong or the patient is being assaulted and battered. The hospital does not want you to defend yourself.

They may say you have the "right to a safe environment," "a respectful environment," "the right to file a complaint," and even "the responsibility to report any safety violations, unsafe conditions, dangers, or hazards." There is nothing about you protecting yourself.

Update 2014-08-18

Patient Rights & Responsibilities and Patient Visitation Rights (Source: Skyridge Medical Center)

Rights:

• To participate in ethical decisions that may arise in the course of care including issues of conflict resolution, withholding resuscitative services, foregoing or withdrawal of life sustaining treatment, and participation in investigational studies or clinical trials. You can ONLY participate in ethical decisions, not in deciding your treatment. That is up to the paternalistic physicians.
• If the healthcare facility or its team decides that the patient's refusal of treatment prevents him/her from receiving appropriate care according to ethical and professional standards, the relationship with the patient may be terminated. This is listed as a right. Again, the paternalistic physicians decide what is best for you.

Patient Responsibilities:

• To follow the plan of care established by his/her physician, including the instructions of nurses and other health professionals as they carry out the physician's orders. PATERNALISM!

If the patient has a responsibility to follow the physician's treatment plan, then does the patient not have the right to a treatment plan that will cure the disease?