Patient Rights & Responsibilities
ESRD Network 16 presents this page of patient rights and responsibilities as an important part of your care. Observing them will contribute to more effective care and greater satisfaction for you and the healthcare team. Federal law CFR (405.2138) protects your rights as an End Stage Renal Disease (ESRD) patient without regard to cultural, economic, educational, or religious background, sex, or the source of payment for care.
To Be Informed
- Access to complete and current information concerning diagnosis and treatment in terms that can be understood. If your medical condition prevents you from understanding, it should be discussed with an appropriate family member or other responsible person.
- To be informed about different appropriate treatment modalities available under the ESRD program such as: hemodialysis (in-center or home), continuous ambulatory peritoneal dialysis (CAPD), continuous cyclic peritoneal dialysis (CCPD), and transplantation.
- To be informed of newly accepted developments and techniques related to treatment.
- To review lab values and treatment sessions, as well as the right to an explanation of their significances so that you may participate more knowledgeably in your treatment plan.
- To be informed of what medications you are taking, the reason for them, and any common side effects they may have.
- To understand the nature and treatment of kidney disease to the best of your ability.
- To provide information about past medical history, which is necessary to plan and conduct the treatment program.
- To ask questions regarding directions and/or procedures that are not understood.
- To comply with the treatment program and medications prescribed by the physician and the healthcare team.
To Have Quality Health Care
- To quality health care consistent with high professional standards.
- To participate in the development of your own treatment program as part of the healthcare team.
- To expect that new staff members in training will be directly supervised by experienced staff.
- To assistance with communication problems that may limit your ability to comprehend illness or carry out the treatment plan.
- To achieve maximum well-being by supplying all information required to plan and comply with the treatment program.
- To comply with facility rules and regulations that have been developed to protect life, and to ensure safety and good quality care to all patients equally.
- To ask to speak or meet with a charge nurse or center director if you have concerns about a certain staff person's performance.
- To ask for assistance with specific problems or specials needs.
- To find out if your insurance plan pays for second opinions. If not, payment may be an out-of-pocket expense.
Respect, Privacy and Confidentiality
- To be treated with dignity, respect, and consideration by the healthcare team.
- To expect that the healthcare team will listen to you when you offer suggested changes to your dialysis treatment.
- To participate in decisions on what form of treatment to receive or, options for a change in treatment.
- To have privacy with respect to examinations and/or discussions of medical care.
- To expect that personal medical information will be kept confidential.
- To expect medical care and services without discrimination based on race, color, sex, sexual preference, religion, or national origin.
- To be considerate and respectful of physicians, staff, other patients, and visitors in the dialysis facility.
- To be considerate in getting your needs met when staff are caring for others.
- To be clear on your request for assistance.
- To not share medical information you hear about someone else.
- To never threaten others, act in a violent or abusive manner, or cause any physical harm.
- To follow the appropriate steps in filing a complaint or making your concerns known, if you believe you are being treated differently by the healthcare team because of race, color, sex, or religion.
Information, Education, and Counseling
- To be told all about your disease and treatment. This includes medical procedures, tests to be done, equipment to be used, your progress, future proposals, and risks involved.
- To find your own nephrologist and treatment facility.
- To education on various treatment choices.
- To be advised that not everyone is a suitable candidate for every treatment method and to advantages and disadvantages of treatment choices.
- To receive social work and dietitian services on a regular basis.
- To know if the facility re-uses dialyzers and the option to permit reuse of your dialyzer.
- To understand the nature and treatment of your kidney disease.
- To help make and carry out the treatment program.
- To ask questions of staff members to obtain further instruction or understanding.
- To contact the staff regarding any medical, psychological, social, or dietary assistance that is needed.
- To ask how they care for re-used dialyzers.
Informed Consent, Transfer and Refusal of Treatment
- To receive the necessary information to give an "informed consent" prior to any new form of treatment or procedure.
- To a full explanation of any research program in which you may be asked to participate in accordance with federal and state regulations.
- To have a study carried out only with your informed consent or that of a legally responsible party.
- To refuse or withdraw consent at any time for any treatment.
- To refuse treatment and to be informed of the medical consequences of your actions.
- To obtain assistance to transfer to a new facility if you are unhappy with the care at your facility.
- To receive a full explanation if your dialysis facility initiates an involuntary discharge action.*
- To have "Advance Directives" that declare your medical treatment wishes if you ever become unable to communicate.
- To decide whether the information you receive from caregivers is enough to feel comfortable with a new procedure.
- To secure the services of a nephrologist to provide your medical management, if you transfer to a new facility (transfer options may depend on insurance company policies).
- To understand the consequences of not following your treatment plan and to explain the reasons for your refusal.
- To know what the rules of conduct are and to follow them. If you disagree, follow the appropriate procedure for voicing your concern.
- To provide the facility with a copy of complete, current documents, if you have an "Advance Directive" (Living Will or Medical Durable Power of Attorney).
Knowledge of Facility Services
- To expect a clean, well-run facility that follows laws and safety rules, and has policies for patient care.
- To expect the facility to provide treatment at your scheduled times, except in unusual circumstances.
- To know the rules for how care is provided at the facility and to be told when they change.
- To be dialyzed at the hours most convenient to you as the facility schedule permits.
- To receive, upon request, information about facilities that accept visiting patients and to receive assistance in making travel arrangements.
- To be informed of facility charges and services not covered by Medicare, Medicaid, and/or other healthcare coverage.
- To follow facility rules and policies for care.
- To make every effort to be on time for all scheduled appointments and dialysis treatments. If an appointment needs to be cancelled or delayed, a call to the facility should be made in advance.
- To make and confirm financial arrangements for dialyzing away from your usual facility far enough in advance, if you plan to travel.
- To arrange for medical treatment records to be sent back to your "home" facility at the end of your visit.
- To know the costs of treatment and provide adequate and complete information about your Medicare eligibility and other necessary financial matters.
- To be aware of which services provided to you are covered by insurance and which you must pay yourself.
- To promptly notify the facility of any change in insurance coverage.
- To apply for Medicare Part B coverage.
- To receive emergency medical care without unnecessary delay.
- To be informed of the facility's emergency plan and procedures in case of emergencies (e.g., fire, loss of power, natural disaster, low water pressure, unavailable medical care).
- To be informed of your facility's plan of action for medical emergencies during facility hours of operation and after hours (e.g., fistula bleeding, clotting, etc.).
- To learn the facility emergency protocol and emergency procedures for your treatment.
- To ask questions if something is unclear or you don't understand.
- To provide an emergency contact number to the facility.
- To know how to contact your physician and where to go in case of an emergency.
- To file a complaint or grievance with facility management if you feel the care is not safe, have a problem with the care you receive or arrangements you have at the facility, and to request that they try to resolve the problem without retribution.
- To file a complaint or grievance with the ESRD Network in the region and/or your state health department in an attempt to resolve the problem without retribution.
- To know and to follow the facility's protocol rules and regulations.
- To try and settle any disagreements internally with the appropriate personnel.
- To know the facility grievance procedure and utilize it to try and resolve your concern.
- To use ESRD Network 16 grievance process, if after exhausting the facility internal grievance procedure, you believe the concern has not been adequately addressed.
* Medicare regulation (Federal Law) 405.2138 (b)(2) "All patients treated in the facility are transferred or discharged only for: 1) Medical reasons 2) for the patient's welfare or that of other patients, or 3) for non-payment of fees (except as prohibited by the title XVIII) of Social Security Act), and are given advance notice to ensure orderly transfer or discharge"
Adopted: 3/83; Reviewed: 9/90; 4/98; 8/99; 2/06; Revised 02/28/06