Comply or Non-comply.... that is my question

[jojosmommy]

I'm pretty new to dialysis.  I started hemo back at the end of September, so I feel pretty much like I'm still learning the ropes.  However, I've been having some issues with the staff at my center.  I've never been the kind of person who would question anyone who was supposed to know what they are doing, such as doctors and nurses, but I've found myself getting very aggravated with the nurse and PCT's.  We have literally argued over blood pressure cuffs, and the nurse has infiltrated my fistula twice in the past month (the second time being just this Monday) all because she doesn't feel it necessary to use the longer needle that needs to be used for my very deep access.  Every time there is an issue, I hear this little voice telling me that I have to be my own advocate and need to speak up and stand up for my rights as the patient (hence arguing about blood pressure cuffs).  However, I'm afraid to say too much because I don't want to cross that line of non-compliance.  This center is new and hasn't been running even a year yet.  There is only one nurse and 2 PCT's.  The nurse is also the center administrator, so there is not really anyone in center to go to with complaints or issues.  The nurse has even given me a threat of sorts by telling me that if I didn't do things her way she would have to document on my chart that "the patient refused".      So my question is for those who have dealt with similar issues.... how do you make sure your being treated well without being labeled as non-compliant?  I'm very frustrated with this whole situation.  Even to the point where I'm going to look into a new center when I get a break from work in a couple of weeks.  Things have got to be better than this somewhere else!

Thanks in advance! 

[iketchum]

You must be aware of your treatment and how it should be done. It is non-compliant of the nurse and techs not to use the correct needles and settings on the machine. The head nurse needs to have a boss over her, That is one person to contact. Another is your doctor. You may already know that new fistulas are easy to infiltrate. Mine made my entire arm black and blue and then later all green. I am sorry you have to go through this and hope you can get some good advise from the people here. good luck.

[brandi1leigh]

I completely understand you. I, too, have a problem speaking up because I don't want to be labeled a troublemaker (and that's without the threat of noncompliance). For me, being nonconfrontational is a character flaw. People don't understand how hard it is for me to speak up for myself. But I'm trying to get better about it.

You have to speak up for yourself. Talk to your doctor. You don't have to tattle, but could approach it as concern. Ex: "I'm just concerned that the center doesn't have the needles since they don't use them." I know it's passive aggressive, but you have to do it in a way you feel comfortable. You have to. It's your health, it's your life. There has to be someone over the nurse. She can't have complete autonomy. If she does, look at finding a new center. I don't want anyone treating me who doesn't have to answer to someone and who won't listen to me.

[Meinuk]

As a person with ESRD in the United States, being treated by a unit that is under the conditions of coverage of CMS (Medicare) you have rights, and you have a place to reach out to: The ESRD Networks. If you are having a problem with staff and fear that they may retaliate, call the network.  If you feel that your rights are being violated, or you will be held "non compliant" Call the Network.  Each network has a 1800 "hot-line" in their area.

The networks are government contractors that exist for YOUR quality of care and collecting dialysis data for CMS (Centers for Medicare and Medicaid). They have oversite for quality of care in dialysis in each region (except for VA Hospitals).  If the State needs to be called in (like in my old DaVita unit - closed for infecting nine people with Hepatitis C) the network that can facilitate that. I had a lot of problems when my old unit was closed.  It was the Network that called me to make sure I was ok.  DaVita just sent me nasty letters.

When the State inspects a unit and finds that it has violations, it is the Network Staff that is called in to work out a plan with the unit to correct their problems.  Your Nurses and PCT's should be trained well enough to be able to mitigate conflict.  Who am I kidding, this isn't a perfect world, BUT there are rules and procedures in place to protect YOU and your quality of care. They just need to be enforced, and if no one tells the Network, well, then nothing can be changed. There is a course that your nurse and PCT's  may need to take:  DPC - decreasing patient conflict http://www.nwrenalnetwork.org/dpc.htm. Teaching them will help them in their job, and it will help YOU. You should never be scared to stand up for your rights. But if you are scared, you can always call anonymously - no one at a Network should force you to give your name.

And if you don't have a problem, and you see that you can be a help to other patients in your unit, by acting as a mentor, and spreading the word, sign up with your social worker and network to volunteer as a PAC Rep.  It is a good thing to do and is resume building as well.  An involved person a healthier person.

You can find your network by selecting your region on the map here:  www.ESRDNCC.org

Here are the Patient Rights and Responsibilities something like this should be available to you in your unit:

Patient Rights and Responsibilities

Rights

    * Be treated at the facility of his/her choice.
    * Be fully informed by his/her personal physician of his/her medical condition unless medically contraindicated and so recorded in his/her medical record.
    * Be treated with consideration and respect and in full recognition of the patient's individual and personal needs, including the right for privacy in treatment, interviews and examination to the extent possible and in accordance with HIPAA guidelines.
    * Be made aware of his/her rights and responsibilities, including the rules governing patient's conduct. (Must be posted at facility at all times.)
    * Accept or refuse any medication or treatment offered to him/her and be informed of the risks and/or consequences of such action.
    * Be afforded the opportunity to participate in the planning of his/her medical treatment and be able to refuse to participate in experimental research.
    * Be informed of all services available at the facility.
    * Be informed of all services and charges of the facility not covered under Medicare, Medicaid and/or other insurance.
    * Be ensured confidential treatment of his/her personal and medical records in accordance with HIPAA guidelines, and approve or refuse release of such records to any individual outside the facility, except in case of his/her transfer to another health care institution or as required by Federal, State or local law.
    * Receive high quality medical care consistent with current professional knowledge and delivered by trained, competent personnel.
    * Be informed of alternative forms of treatment and be assisted in exploring possible treatment alternatives, including referral for evaluation or further discussion when indicated.
    * Be assisted and supported in reaching long-term treatment goals.
    * Be informed of all treatment options.
    * Change treatment modality when feasible and approved by the physician or dialysis facility.
    * Voice grievances and recommend changes in policies without fear of discrimination or reprisal. (Grievances and recommendations may be addressed to facility staff, administrator, the ESRD Network of Texas or regulatory agencies with jurisdiction over the facility.)
    * NOT be transferred or discharged against his/her will except for medical reasons, for his/her welfare or that of other patients, or for non-payment of fees (except as prohibited by Title XVII of the Social Security Act.)
    * Be given advance notice when being transferred or discharged to ensure orderly transfer/discharge. (Such action must be documented in his/her medical record.)

Responsibilities

   1. Understand his/her health condition and the services/treatments being provided.
   2. Follow the instructions/recommendations of his/her physician or assume full responsibility for the consequences of failing to do so.
   3. Comply with facility rules and regulations, which have been developed to protect patients, ensure safety and effect quality care.
   4. Follow prescribed diet, medications and treatment in accordance with physician's orders.
   5. Arrive on time for treatments and give advance notice of delays and absences when possible.
   6. Provide his/her own transportation to and from the facility. (Patient will inform social worker if assistance is needed.)
   7. Inform staff of any health problems, changes or concerns.
   8. Take an active part in his/her treatment plan and establish long-term treatment goals.
   9. Pay for all services rendered and be aware of those services covered by Medicare, Medicaid or other insurance and inform the business office of any changes in coverage.
  10. Conduct himself/herself in a manner that is respectful and considerate of staff and other patients.
  11. Have specific knowledge of what to do and whom to contact in case of emergency.
  12. Bring all home medications to the facility for review when requested.
  13. Inform the staff or physician if instructions or explanations given to patient are not understood or will not be followed.
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The Medicare End Stage Renal Disease (ESRD) Program, established by congress in 1972:
The formation of ESRD Network Organizations was authorized in 1978; Thirty-two ESRD Network areas were initially established and designed to encourage self-care dialysis and kidney transplantation and clarify reimbursement procedures in order to achieve more effective control of the costs of the renal disease program. The Omnibus Budget Reconciliation Act of 1986 (P.L. 99-509) amended section 1881c of the Social Security Act to establish at least 17 ESRD Network areas and to revise the Network Organizations responsibilities. Today, eighteen (18) ESRD Network Organizations exist under contract to CMS and serve as liaisons between the federal government and the providers of ESRD services.

[jojosmommy]

Thanks everyone for the advice.  Meinuk, your info will come in very handy!  They have tomorrow to redeem themselves as far as I'm concerned.  I'm actually very nervous about going back.  The only thing I have to look forward to is going out of town Friday and getting to visit a new center.  So i don't even have to deal with my center on Friday.  We will see what happens when i get back.  I may have to speak with my doctor first.  Problem is, I don't know when I can catch him and speak with him without everyone else around.  In fact, he's supposed to come on Monday's but we actually only see him once every 2 or 3 weeks.  Doesn't seem quite right to me either.  "sigh"  maybe I just need to call my network and bypass the whole crazy lot.  Either way, I'm still going to go visit at another center and see if it might be a better fit for me.  I'm keeping my fingers crossed!   


 

[kitkatz]

Document, document document everything that happens.

[RightSide]

And remember these wise words from the late Commodore Grace Hopper, U.S. Navy:

“If it’s a good idea, go ahead and do it.  It is often easier to ask for forgiveness, than to ask for permission.”

And that's how I comport myself at my dialysis center:  I pester first, and apologize later.

[Hemodoc]

It sounds like looking for a new center may be the most fruitful venture from the information you have posted.  I was labeled as difficult, perhaps even non-compliant myself even with an MD after my name.  When I went to a visiting unit, the paper work said that I "refused EPO," even though I had a Hb of over 12.0 WITHOUT EPO and contraindications to EPO, prior melanoma of all things. It simply was not at all indicated.  How can you refuse a medicine that is NOT indicated? That in in my opinion was a code word for calling me noncompliant.  Imagine that, an MD being called noncompliant for simply exercising my knowledge in my own care which was the correct approach as we now know from several studies on EPO.

The bottom line, NO healthcare person is allowed in any manner or legally to administer ANY medical care whatsoever without your express informed consent.  That being said, I have found exercising my own patient autonomy even with an MD after my name quite frustrating in the dialysis setting.  It is simply a different game that they play anywhere else in medicine.  They have the upper hand in most of these issues, since most patients are not able to self cannulate or do their own self care, but I would highly recommend to consider learning if you are capable and have access to medical personal capable of teaching you.  That removes many of the issues at hand to gain control over your own treatments. Most states do have laws supporting self care even in a dialysis unit for those capable.  That was my approach to similar problems you are describing.

If you only have two techs and one nurse, it may be possible that you do not have any that are truly experienced and they are outside of their own comfort zones dealing with you.  In that case, finding a unit with many caring and experienced techs and nurses can be lifesaving in a very literal way.  If you are having issues with your fistula, your MD does need to know this so that he can evaluate whether there is anything that a vascular surgeon needs to look at.  Communication is key to all of these things and you must find a way to work with your health care team or find a new health care team.  There are too many things that can go wrong quickly that have lasting impacts. If you have a primary care physician outside of your nephrology team, they may be able to help you with some of these issues and perhaps recommend a second opinion with another nephrologist.  Remember, it is your right to do such especially if you are losing trust in your current team as it sounds you are from your opening post. 

So, you may want to consider what you can do to work with your current team, and if that is not going to be a go, then there is probably no benefit to delay looking into your other options available to you.  Not at all easy to know the right way to proceed.  I was fortunate to have one of my old patients as my tech when I started dialysis.  The other benefit is that she truly was talented and knew her stuff.  She was always the go to person for the difficult sticks.  The skill level of techs and nurses varies greatly in my experience in-center. Seeking the people with the highest level of skills is a survival adaptation that many long living and long surviving patients learn early in their course of dialysis.  Again, I was fortunate to have one of the best right from the start and many of the techniques that she used, I still apply to my own self care.  Some of them are quite simple such as covering the needle site with a sterile bandage NOT with tape as most techs do.  You can tape the needles in well without contaminating the needle entrance site by covering it with a post op sponge that is sterile out of the package.  The tape leaves adhesive residue that is a nidus for picking up dirt and bacteria in my opinion that I avoid.  Keeping that away from the needle site is a key component in my opinion to avoiding fistula infections.  My first tech taught me many such skills I still use today.  Having a skilled tech to teach is very important when first starting dialysis in my opinion.

Once again, patient autonomy is very hard to assert in a dialysis unit, but it is nevertheless the medical-legal standard of American medical care, even for intervention of a common cold.  It is one of the most common reasons for malpractice suits in America, but somehow, the dialysis industry is much more lax than the rest of medicine.  I can't explain why, but that is just my own opinion from my own experiences as first an internist with about 20 years experience and now as a patient.  It is quite startingly different between the two settings.

I wouldn't delay speaking to your current medical team and especially your physician about your concerns.  I hope some of the information above is useful to you in dealing with your current medical team or with a new team should you deem that your best approach.  Once again, you may wish to involve your primary care physician for his advice on how to proceed as well since he likely knows your case better than anyone else and may also have knowledge of the best dialysis centers in your area. The outcomes can be quite different between centers.  Unfortunately, at the present time, it is difficult to get a true picture of the outcomes of centers, but hopefully that will change soon.

Good luck with all and learn as much as you can about your care.  I found that to be my best survival skill for dialyis to date.  THat allows you to work with your medical team as a true partner in your care which many find improve outcomes.

[natnnnat]

It sounds like looking for a new center may be the most fruitful venture from the information you have posted.  ... you may wish to involve your primary care physician for his advice on how to proceed as well since he likely knows your case better than anyone else and may also have knowledge of the best dialysis centers in your area. The outcomes can be quite different between centers.  Unfortunately, at the present time, it is difficult to get a true picture of the outcomes of centers, but hopefully that will change soon.

Hey jojosmom I hope your situation is improving, but if you are still looking for a new dialysis centre then this thread just started by Bill Peckham might help you compare centres.
http://ihatedialysis.com/forum/index.php?topic=21352.20