STATEMENT OF PATIENT RIGHTS AND RESPONSIBILITIES
ESRD Network #4 presents this statement of patient rights and responsibilities, an important part of a patient's care, with the expectation that observance of them will contribute to more effective care and greater satisfaction for both patients and facility personnel without regard to sex, cultural, economic, educational, religious background, sexual orientation, or to the source of payment for his/her care. Network #4 serves Pennsylvania and Delaware.
Booklet: Patient Rights and Responsibilities (format: PDF, size: 291 kb)
RESPECT, PRIVACY AND CONFIDENTIALITY
Rights: It is your right to be treated with respect, dignity, and consideration of your rights as an individual by everyone involved in your care; and, to have as much privacy in treatment as possible. Case discussion, consultation, examination and treatment are confidential and should be conducted in a manner, which protects these rights for you.
It is your right to expect all communications and records of your care to be treated as confidential. You may approve or refuse to release your records to any individual outside the facility, except if you transfer to another health care institution, or as required by federal, state, or local laws.
Responsibilities: It is your responsibility to treat the staff with the same respect and individual consideration as you expect for yourself. This includes the responsibility to be honest and direct about everything that relates to you as a patient, to respect the personal rights and private property of other patients, and see that your visitors are considerate as well.INFORMATION, EDUCATION, AND COUNSELING
Rights: It is your right to be told, in terms, which you can understand, all about your disease and its treatment. This includes diagnosis, medical procedures, tests to be done, equipment to be used, your progress, your future prospects, the risks involved, and the treatment choices and locations where treatment is available. You also have the right to know the person responsible for the procedures and/or treatment. It is your right to seek your own nephrologist and treatment facility and to participate in the planning of your medical care.
You have the right to education on the various treatment choices, including hemodialysis, peritoneal dialysis (CAPD/CCPD), and transplantation. However, be advised that not everyone is a suitable candidate for every treatment method; but those who are not have the right to be told by their physician why they are not.
You have the right to assistance which deals with specific problems or special needs that include (but are not limited to) blindness, hearing loss, language barrier, limited mental capacity, financial restrictions, etc., that may limit your ability to comprehend your condition or carry out your treatment plan.
It is your right to have access to qualified social work and dietary counseling.
Responsibilities: It is your responsibility to understand the nature and treatment of your kidney disease to the best of your ability. An important part of the success of the treatment plan is your understanding of your health problems. You should help make and carry out the prescribed treatment program as much as you can. You are encouraged to ask questions of staff members to obtain further instruction if you do not understand or are unable to follow your treatment plan. Following your treatment plan closely can directly affect how you feel.
It is your responsibility to contact the staff about any medical, psychological, social, dietary, or financial problem with which you want assistance.
INFORMED CONSENT, TRANSFER, AND REFUSAL OF TREATMENT
Rights: It is your right to receive information necessary for you to give "informed consent" prior to any new procedure or treatment (meaning that you agree to things only after you understand them).
It is your right to be transferred or discharged only for medical reasons, for your own welfare, for the welfare of other patients, or for willful nonpayment of services provided to you (except as prohibited by the Social Security Act). You must be given reasonable advance notice of any transfer or discharge except in the case of an emergency as determined by the professional staff.
It is your right to refuse to allow a staff member undergoing training to provide treatment unless a competent and fully trained staff member is present and directly supervising the trainee.
It is your right to refuse treatment to the extent permitted by law, and to be informed of the medical consequences of your actions. (In other words, most patients can refuse treatments, but they need to know that doing so can bring about great harm and even death in certain circumstances).
Documents called "advance directives" can protect your right to refuse or limit future medical treatment if you ever become unable to communicate your wishes. This is done by writing them down ahead of time using documents such as Living Wills and Medical Durable Powers of Attorney. Ask your treatment facility staff about information on "advance directives" if you are interested.
Responsibilities: It is your responsibility to decide whether or not the information you get from your caregivers is enough for you to feel comfortable in agreeing to undergo new procedures.
If you transfer to a new facility, it is your responsibility to secure the services of a nephrologist to provide your medical management at that facility.
It is your responsibility to notify the medical staff if you intend to not follow your prescribed medical treatment plan.
It is your responsibility to understand what will happen if you do not follow your treatment plan and to explain your reasons for your refusal to the medical staff. Also, you must sign any forms required by the facility to document your actions.
If you have chosen to use "advance directives" (Living Will or Medical Durable Power of Attorney), it is your responsibility to furnish your facility with complete, current documents.
KNOWLEDGE OF FACILITY SERVICES
Rights: It is your right to be dialyzed at the hours most convenient and desirable to you, as the facility schedule permits. Furthermore, it is your right to expect the facility to provide treatment at your regularly scheduled times, except in unusual circumstances.
It is your right to receive, upon request, information about facilities available to visiting patients and to receive assistance in arranging for dialysis when you plan to travel away from home.
It is your right to know all costs of your care, including costs for any consultants, if used, and to have access to individuals who know about Medicare and other potential sources of financial assistance, and to be told about charges for services not covered by Medicare or other insurance.
Responsibilities: It is your responsibility to make every effort to keep all scheduled appointments and dialysis treatments and to be on time. If an appointment needs to be canceled or delayed, a call to the unit should be made in advance. You should recognize the possibility of having to reschedule if you are late.
It is your responsibility, when dialyzing away from your usual facility, to plan your travel far enough in advance that arrangements can be made. You will need to confirm financial arrangements. Medical information should be available to the visited facility and medical reports should be sent back to your "home" facility. When dialyzing away you have a particular responsibility for being knowledgeable about care and treatment, to ensure you receive appropriate care.
It is your responsibility to know the costs of treatment and provide accurate and complete information about your Medicare eligibility and other necessary financial matters. You are responsible for payment of all services provided to you and you should be aware of those services covered by insurance and those for which you must pay yourself. If you have any change in insurance coverage, it is your responsibility to immediately notify your facility.
EMERGENCY CARE
Rights: It is your right to expect emergency medical care to be available at all times and to be given to you without unnecessary delay.
It is your right to be told exactly what to do and/or whom to call by your physician or other caregiver, in case of medical emergencies such as access bleeding, clotting, or other situations which may happen for which there may be some advance action plan (fire, power outage, low water pressure, natural disasters, etc.)
Responsibilities: It is your responsibility to recognize what constitutes an emergency and what actions you, or someone acting on your behalf, need to take to appropriately deal with the emergency situation.
GRIEVANCE MECHANISM
Rights: If you feel that there is a problem with the care you receive or arrangements you have at your facility, then it is your right to try to correct the situation by talking to the staff to voice a complaint or to suggest changes in policies or services. It is your right to do that, or have someone else do it in your behalf, without fear of punishment or negative actions toward you. If, after talking to the appropriate facility personnel the problem still continues, you may file a formal complaint called a grievance with the facility, which is required by law to have a Grievance Procedure to help resolve the matter. If that process is not satisfactory to you (and the problem pertains to a quality of medical care issue) you can contact ESRD Network #4 for further information and/or assistance, which might include filing a formal grievance with the Network. Upon request your name can be held confidential.
Responsibilities: It is your responsibility to know and to follow your facility's posted rules and regulations. If a problem arises for you we suggest that you try to settle any disagreements informally with the appropriate personnel. If the problem cannot be solved in that way, it is your responsibility to know the proper Grievance Procedure in your treatment center and we then suggest that you use that procedure. If, at that point, the grievance remains unresolved and pertains to a quality of care issue, you are encouraged to use the ESRD Network #4 Grievance Protocol. You may contact the Network by writing ESRD Network #4, 40 24th Street, Suite 410, Pittsburgh, PA 15222 or by calling the following toll-free phone number: 1-800-548-9205.
A FINAL WORD TO PATIENTS
Please remember that you have choices. As a dialysis patient, you have both rights and responsibilities. Under Federal rules and regulation, all Medicare-approved dialysis treatment centers must have written policies regarding the rights and responsibilities of patients in their care. These policies should be given to you when you begin treatment at the dialysis unit.
If you have any questions or concerns about these rights and responsibilities or the policies issued by your dialysis center, speak with your doctor or the staff members of the dialysis unit (nurse manager, social worker, and administrator). If you continue to have questions or concerns, you can contact the Network by writing to ESRD Network 4, 40 24th Street, Suite 410, Pittsburgh, PA 15222. Patient's toll-free number: 1-800-548-9205.
