10 Things Every Dialysis Patient Should Know (anything you'd add or remove?)

[okarol]

From the National Kidney Foundation (MAY 2012)

10 Things Every Dialysis Patient Should Know

When you develop end stage kidney failure, your kidneys aren't able to function on their own anymore. This usually occurs when you lose about 85-90% of your kidney function. Dialysis can help those with kidney failure live longer, healthier lives, but as a patient, it may feel overwhelming to make decisions surrounding your treatment. It's important to realize that when it comes to your care, you have many rights and choices and the National Kidney Foundation encourages all patients to make informed decisions. Here are the National Kidney Foundation's Top 10 Things Every Dialysis Patient Should Know.

1. You have treatment choices. Options exist for how, where and when you dialyze. Dialysis can be done in a hospital, in a dialysis unit that is not part of a hospital, or at home. You and your doctor will decide which place is best, based on your medical condition and your wishes. There are different types of dialysis - peritoneal and hemodialysis. Work with your health care team to determine a treatment plan that makes you feel comfortable. Recent studies show that the majority of patients beginning in-center hemodialysis (HD) know very little, if anything, about the option to dialyze at home. Once informed, 40% or more of patients are interested in this treatment option, and yet less than 10% actually begin home dialysis. If you're dissatisfied with the type of dialysis treatment that you're receiving, ask your healthcare team if another type of dialysis treatment would be better.

2. You can compare in-center dialysis facilities online. Information on over 5,600 US-based dialysis centers is available online through the Medicare website. To help you make choices about your care, you can compare different facilities side-by-side and evaluate each facility based upon clinic characteristics and quality measures. You can search for dialysis facilities by name or geographic proximity. After completing an initial facility comparison to determine which facilities best meet your needs - such as the number of hemodialysis stations at a particular location and whether there are evening shifts available - visit the facilities that you're most interested in. Talk to the staff and other patients, as well as your doctor to ensure that this dialysis facility is a good fit for you.

3. There are ways to prepare ahead for an emergency. Ask your dialysis facility about their emergency plan in case of a snow storm, fire, power outage or other natural disaster. As back up, make sure you have the names, locations and phone numbers of other dialysis units and hospitals in your area. Since regular community transportation services may not be working in an emergency, be prepared to make other arrangements for getting to dialysis. You may need to contact the police and Emergency Medical Services (EMS) for assistance. If you dialyze at home, make sure you have at least two weeks' worth of unexpired supplies on hand. If you have to miss a dialysis treatment, begin your emergency meal plan. Click here for more information about planning ahead for emergencies and to find a grocery list and meal plan for a 3 day emergency diet.

4. There is an easy way to transfer patient records between clinics. There is an easy, secure way for your health care team to transfer your treatment records online. In 2009, the Centers for Medicare and Medicaid Services (CMS) created a centralized web-based data collection system called CROWNWeb to help reduce and eliminate patient treatment interruptions. This central system helps to streamline patient care regardless of the reason for changing dialysis centers. For example, if you've been admitted to the hospital, or if you needed to relocate during an emergency evacuation, your doctors and health care team can access up-to-date information about your dialysis so that you continue to receive appropriate care no matter where you are.

5. You can travel while on dialysis. Dialysis centers are located in every part of the United States and in many foreign countries. The treatment is standardized, but you need to plan ahead by making an appointment for dialysis at another center before you go. The staff at your center may help you make these appointments.

6. You can be your own best advocate. Know what key questions to ask your doctor or other healthcare professionals. Take notes so that you can refer back to them later. Partner with your doctor and decide on a treatment plan together. Advocate for yourself and share how you're feeling.

7. You have many rights. You as a patient have a great deal of control over your treatments. Patients have a bill of rights which includes receiving quality care, counseling about your medical information, and an expectation of privacy. You also have responsibilities. Once you decide on a course of treatment, it's important to follow the recommendations of your health care team. If you decide to receive in-center dialysis, arrive at dialysis on time so that you can receive the full treatment without delays.

8. You can receive insurance coverage. If you have end stage renal failure, you are likely eligible for Medicare insurance coverage. Speak with your health care team and social worker for help filling out insurance paperwork.

9. You may need to follow a special diet. When your kidneys are not working properly, you may not be able to eat everything you like, and you may need to limit how much you drink. Your diet may vary according to the type of dialysis you receive. It is important to speak with a renal dietitian so that you are able to understand what you can and cannot eat based on your full health history.

10. Dialysis patients can work. Many dialysis patients can go back to work or school after they have gotten used to dialysis. After establishing a dialysis routine, many patients have more energy and find that they are able to time to work around this new schedule. Some patients even find creative ways to work remotely from dialysis with the use of a laptop or cell phone, depending on their field of expertise.

[Joe]

That's a great list okarol! Thanks for posting it.

[okarol]

11. Join ihatedialysis.com

[dialysisadvocate]

I must, once again, put my two cents worth in -- having attempted to improve care at a state and federal level, and having worked with patients, throughout the US, I take exception to the NKFs list of 10 -- Yes, indeed, good guidelines but much is missing that needs to be brought forth..

Reference No 2 -- To make it easier for patient, the NKF could have given the Medicare website to compare facilities -- again, making it easier for patients and their loved ones.. Here is the link, hope it goes through -
http://www.medicare.gov/Dialysis/Include/DataSection/Questions/SearchCriteria.asp?version=default&browser=IE%7C9%7CWindows+Vista&language=English&defaultstatus=0&pagelist=Home

However, in order to get more data about a facility, one should go to the ProPublica site to their 'tracker'
www.propublica.org/dialysis

Reference No 4 - NKF did not mention that you, the patient, can obtain copies of  your medical record - We have found many patients having problems in doing such. We recommend that patients obtain a copy of each treatment sheet and take it with them at the end of their treatment. We have found that by obtaining these, if there is a problem, post dialysis, and one needs to seek further medical care, these treatment sheets can come in handy.  However, we have also found that often staff do not document fully that which happened during the dialysis treatment.

Reference No 6 - NKF failed to fully discuss the 'treatment plan/treatment conference'. You should be invited to the treatment planning conference which should include the nurse, physician, social worker, dietician.. This is the time when the plan of action is written, with YOUR input. We have found, more than not, that patients are not aware of these meetings, nor are patients invited to these.. Often facilities cover their butts by posting a memo in the lobby stating if you want to attend, notify the staff. Reality is that many patients, for whatever reason, do not read all the materials posted all over the walls in some clinic lobbys. We have also found that the staff meet, without the patient, and then bring the treatment plan to the patient and ask them to SIGN their signature, without explaining in full/detail. By signing it means that you have provided input and agree.

Being your best advocate includes, which also the NKF did NOT state - is knowing what the CORRECT procedures are -- that way, YOU, can remind staff if you observe an incorrect practice.

Reference No 7 - Patient Rights -- we have found, all too often, that this means NOTHING === staff document in the medical records, what we call, 'defensive documentation' to cover their butts -- we have found that when patients ask questions, often staff become defensive (How dare you question me?) and retaliate.


THE MOST IMPORTANT THIING THAT NKF LEFT OUT IS THE aspect of the patient really being the center of care --- staff, for the most part, we have found, are not educated and trained to deliver individualized care.. they are not trained/educated to fully educate the patient in areas of dialysis -- e.g. patients should know what each entry into the machine means.. and what is correct entries e.g. UFR, temperature, etc. Patients can prevent mistakes from happening but only if they know the correct practices. I wrote an article on this aspect a few years ago that was well received by many.. You as the patient have a right to know, but first and foremost, staff must be educated to understand that the patient has a right to know what correct practices are e.g. infection prevention, entering data into machines, etc..
note: I remember when my father started dialysis, we asked for a copy of the machine manual so we could understand more fully and we asked questions, we were labeled immediately as problem patient and family as well as being accused of wanting to find mistakes when we only wanted to be part of the team and make sure staff implemented correct practices. We were told to trust staff but when staff make mistakes, it is hard to trust TRUST IS EARNED and once you observe a mistake you lose trust..
opinions of Roberta Mikles BA RN
Director, Advocates4QualitySafePatientCare   www.qualitysafepatientcare.com   

[okarol]

  Thank you Roberta - very good points!

[dialysisadvocate]

Okarol, thank  you -- it is a pleasure to post here, again, and share my thoughts, etc of which are a result of my own and my father's experiences and working with patients, throughout the US -- It is a bit disturbing that nothing has changed in the area of patient education -- I remember when I worked as a RN and we had to do care plans - we ALWAYS included the patient. (not dialysis but a pysychiatric facility).. however, it does not matter...
How many times have any of you sat in a room, with the physician, nurse, dietitican and social worker and given your input of what YOU WANT as the patient. Unfortunately , staff don't understand that the patient is the center of care  -- why? Because providers do not stress such....which means -- the patient has a right to be involved in their care  ......................the ONLY thing I have ever seen written that states the patient should be  educated as to the specific infection control practices that staff will be implementing is from an APIC guidelines - Guidelines for HD - 

Further, I must put my two cents in about NKF -- I do not think this NKF really is focused on the right road -- I have asked for years and years why they have not gotten involved in the area of improving care incenter? They are well aware of that which happens at many units on a day to day basis. In fact, I participated in one of the many CMS open-door forums, mostly providers and organizations that are patient advocacy (connected to the industry, I might add) --I stress edthe problems with the incenter care -- with a focus on infections -- After this conference call, I contacted the NKF. I received a nice polite email thanking me for what I was doing etc and to keep up the good work.. in other words ... well, you know the story ---when I asked for their help, bing they had so many connections, where were they NO WHERES to be found.... hence, I lost alot of respect for the NKF --- You see, they are all in bed together as far as I am concerned.. I was approached at one time to become involved with a few providers, but once I did that, I felt I would have sold my soul out.. if you know what I mean.. I can not be connected to any industry related dialysis because then you really can't be objective and have to walk a fine, fine line..
opinions of Roberta Mikles RN BA www.qualitysafepatientcare.com

[dialysisadvocate]

Speaking of NFK - Here is something that was on www.renalweb.com today 

 Socializing Between Professionals and Patients in a Dialysis Unit Can Improve Patient Health
Press release from the National Kidney Foundation.

"Patients can be members of the health care team if we invite them to join us and learn their life stories, not just their medical history. This innovative approach to education has tremendous potential for improvements in quality of life as well as health,” said Lynda Szczech, MD, National Kidney Foundation President.

The  above I copied and pasted from www.renalweb.com  _ I have to laugh.. wow, I just posted about the NKF and not really helping with care incenter -- then I go to renalweb to read the days articles and what do I find --- interesting. Perhaps, Dr. Szczech should be saying that the health care team can improve patient health by compliance with facility policies and procedures, increased education and training and periods for each e.g. longer times in training ...and providing more individualized care ---

It is when I see such as this statement she has made that I get annoyed, frustrated and really angry that no one at the NKF level realizes what is really happening in many units to many patients. I wonder if they have ever taken a look at a survey or if they would want some of their loved ones, or themselves, to receive the care that some patients receive -
I would like to ask Dr Szczech if she would go to our site and read through ALL the surveys over the last couple of years and then tell me and othes what would improve patient health -----------
opinions of roberta mikles -- www.qualitysafepatientcare.com