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Be your own Advocate

There is much to learn when you are new to kidney dialysis, and for those of you going to a hemodialysis center you might feel like you don’t want to rock the boat early on as you are learning your new environment, and how things work at your new hemodialysis center. There will of course be an adjustment period both for you and the people working with you at the dialysis center, and this is the time to ask questions and learn the meaning behind their procedures and actions. This is all completely reasonable.  I hope that you have found a place that has experienced staff with regular shifts and procedures that work for you and your family’s schedule, and that this information is not something that you need to consider.

For those of you that have experienced anything you feel is out of the ordinary or concerning that directly relates to your health there are procedures in place for you to help make sure what has happened doesn’t happen again to you or another patient.  

Some examples:

  1. Unusual large bruising near your fistula area

  2. Being told they are shortening your dialysis treatment because you were late or for some other reason such as someone else needs your chair, without physician approval prior to ending treatment early.

  3. Asking you to sign a form agreeing to early termination of your treatment if you don’t want to stop treatment, example form below: YOU DO NOT NEED TO SIGN THIS FORM.

  • “I, your name xxx, request to terminate my dialysis treatment prior to the prescribed time. I am fully aware that this is against the medical advice of my physician. The risk and consequences of terminating my treatment early have been previously explained to me by my physician. I understand that if, before my next treatment, I have any unusual symptoms such as shortness of breath or chest pain, I should immediately contact my physician. I hereby willfully assume the risk of my early termination of dialysis treatment and agree not to hold my physician, the dialysis facility, its employees or agents responsible for any harm or injury which may result from my action. “. YOU DO NOT NEED TO SIGN THIS FORM.

When and how to stand up for yourself

  1. First: Speak to your care team at the dialysis facility and explain the problem you experienced.

  2. Second: Give them the opportunity to respond with understanding and plans for it not to happen again.

  3. File an official grievance directly with your dialysis facility, you can do this via the social worker assigned to you.

  4. You can also file a grievance with the ESRD (End-Stage Renal Disease) network for your state.  This can be done independently and anonymously from filing a grievance with your dialysis center. To get your local ESRD network information go to the website and put in your state. More information directly from ESRD is below.

  5. You can also file a grievance with your State Department of Health

  6. Become an advocate with the NKF: Here.

  7. If your dialysis center is run by a publicly owned company like Davita, contact Davita headquarters directly.

  8. Write honest reviews on any website that where the dialysis center is listed. Google, Yelp, etc..

  9. Always answer honestly on the surveys you receive from the government regarding your treatment and care at your dialysis center (don’t feel bad if some people are good and others are not, or your worried about retaliation- honesty helps everyone in the long run! And these should be blinded)

Take Action! Whatever it is you and your family members feel most comfortable with to start the ball rolling, you will feel more empowered once you do. You have a voice and they must listen to it. When surveys come around as they will answer it honestly. Your voice will help others.

Again, I hope this is not something anyone needs to invest time in, but if you are in this situation please take the time, sometimes you might feel like you are the only one who has a problem, but you might be surprised how many others are in the same situation but not speaking up; the more people that point out an issue the quicker it will get resolved!

More detail about Filing a Grievance with the ESRD Network below (verbatim from  ESRD network2 website)

The Network processes grievances from patients, their representatives, family members, care partners, professionals, advocates, and State Survey agencies, related to the quality and safety of care in ESRD certified facilities. Concerns can be filed with the Network by phone, fax, or postal mail.

When the Network is contacted regarding a concern, staff will attempt to resolve the issue in one of the following ways:

  1. Assist the patient to organize his/her thoughts about a situation and provide feedback so that he/she can address the issue on his/her own, if desired;

  2. With permission from the patient, the Network may contact the facility directly to gather information and attempt to resolve the matter;

  3. The facility may be required to complete an Improvement Plan to correct problems;

  4. More serious issues may be referred to the Network’s Medical Review Board (MRB) for review;

  5. Life-threatening situations will be referred to the State Survey Agency: The State Departments of Health.

Grievances are generally resolved within a few days. More complicated cases may take longer (up to 60 days in some cases). In those situations, all parties will be notified of the expected date for the conclusion of the investigation.

Some concerns do not fall under the jurisdiction of the Network or would be more appropriately handled by another agency, such as the state health department. The Network can refer patients to those identified agencies. In more serious circumstances, the Network will contact the agency directly.

Image credits: 

ID 75280649 © Zerbor | Dreamstime.comID 33231167 © Arnel Manalang |


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