PD patient cannot do anymore dilaysis not my will


#1

hi everyone, i was a fresenius PD patient for aboutb a month ending in July. In addition to my end satge renal failure, i also have tourette syndrome. I was thrown out from fresenius in middletown ny because i got angry and shown some ticks, one of which is nvocal and made it sound like i wanted to harm someone. I explained myself and they said they understood, yet they banned me from comming back. Too make matters worse, they contacted other medical directors in region and now i cannot go at any dialysis center even though i had nothing to with davita. They lweft me to die. The hospital director said ER only treats the emegency not regular dialyis. Ive contacted NYS attorney general, and still nothing is being dojne… im getting sicker and no one wants to treat me. Please advise anyone if you can help


#2

Ronald, I am so sorry to hear that your Tourette’s is threatening your life by stopping your access to dialysis. There are things you can do. First, call the Patient Representative at the ESRD Network for your state. You can look that up here: http://www.esrdnetworks.org. The Network may be able to work with your clinic staff to help you. You may also need an attorney. If you can’t afford one, it may help you to talk to Dialysis Advocates. This group handles problems like this and has attorneys who work with them. https://dialysisadvocates.com


#3

Ron,
Dialysis regulations reiterate the federal privacy rule and prohibit dialysis clinics from sharing more than is necessary with another clinic to aid in transferring a patient.I don’t know what you said, but dialysis regulations only allow a clinic to involuntarily discharge a patient without notice if the patient is an immediate severe threat or is making credible threats of physical harm. In the Interpretive Guidance to the regulations it states, “An angry verbal outburst or verbal abuse is not considered to be an immediate severe threat.” I would think that a diagnosis of Tourette’s would have alerted the clinic that you might have tics and say things that they might find inappropriate. Did the clinic feel threatened enough to call 9-1-1 and ask for police assistance? When a clinic involuntarily discharges a patient, it is supposed to notify the ESRD Network and the State Survey Agency (NY State Dept of Health). I wonder if the clinic did that. You can call the NY State Dept of Health and file a complaint at (800) 804-5447. With any advocate, point them to the Interpretive Guidance at V767.

Meanwhile, until you find a clinic that will admit you and treat you respectfully acknowledging your Tourette’s and educating their staff about it, hospitals are required to treat anyone with a life-threatening emergency under a law called EMTALA. If you’re feeling sick, have the emergency room check your labs. When your labs show that you need dialysis, the hospital will have to dialyze you.

Have you considered doing peritoneal dialysis? If you’re a candidate for that type of treatment and can find a clinic that will admit you for training and support, you could learn it in a week or two and after training you’d be doing your dialysis at home with much less contact with healthcare staff who don’t understand Tourette’s. Most home dialysis patients (PD or HD) have to clinic visit 1-2 times a month.

Please keep us updated on your status.


#4

Yes they felt threatened. They contacted depot of health and got me thrown out. However nothing ever became physical. And when I explained the Tourette’s And Shown them documentation they still didn’t understand. I’ve since had help with esrd and the attorney general. They understand. Yet still cannot get into any facility. I went to ER stdyed for two days, and none of the hospital nephrologists wanted to treat me as patient outside of hospital. So im basically left to die. I did find one dialysis center two hours seat that was willing to take me. The won’t be dude I’m too far. And the only close ones are davita snd fresennius who won’t accept me. Yet when NYS and PA AG both contacted davita whom I never even went to, their councel agreed I’m not a threat. Yet local davita snd fresenuus still won’t take me.


#5

This was PD. Only at home. Never did hemo. The incident happened during monthly meeting when all the nurses claimed I wasn’t being compliant with hoe PD. Iit took me time to get used to cycler snd they used that against me that I wasn’t following their prescription. Then I got annoyed and my Tourette’s became more apparent and made vocal threats which were ticks.


#6

I assume you had been diagnosed with Tourette’s Syndrome prior to starting dialysis and it was one of the diagnoses in your medical record. According to the Tourette Association of America:
Vocal/Phonic Tics
Vocal (phonic) tics produce a sound. Simple vocal tics include but are not limited to sniffing, throat clearing, grunting, hooting, and shouting. Complex vocal tics are words or phrases that may or may not be recognizable but that consistently occur out of context. In 10-15% of cases, the words may be inappropriate (i.e., swear words, ethnic slurs, or other socially unacceptable words or phrases). This type of vocal tic, called coprolalia, is often portrayed or mocked in the media as a common symptom of TS.

You say you tried to explain these TS verbal tics which they interpreted as threatening language and they involuntarily discharged you. If they had taken the time to be better informed they could have addressed their concern that you were not performing dialysis as prescribed by providing additional cycler training and testing you to assure you understood. It doesn’t sound to me like the clinic staff taken your TS into consideration.

If you haven’t contacted the Dialysis Advocates organization that Dori suggested earlier (see link above), I’d do that right away. They have attorneys that can hear your case and may be able to help you. I’d ask if this was a violation of your civil rights or of the Americans with Disabilities Act (ADA). This article on he ADA and Tourette Syndrome discusses a legal case that was brought against Wal-Mart for ejecting someone with verbal tics that drew attention. This sounds similar to your case.


#7

I emailed the dialysis advocate. Hopefully she can help. The first time in my life I feel like everything is hopeless and I will die. Thanks


#8

Please update us as things move forward. BTW, have you looked at the Find a clinic database on the full Home Dialysis Central site that you can search by distance from your zip code for clinics offering CAPD and/or CCPD. You can find this database at https://www.homedialysis.org/clinics/search? You might want to look for clinics that aren’t owned by either DaVita or Fresenius. Other clinics may be more willing to learn about your condition and work with you, especially if you meet with them and give them information from reputable sources. It sounds like one of the goals would be to not trigger your anger, which seems like a reasonable goal for a clinic to have since the ESRD regulations require clinics to individualize care and to respect patients’ rights. The regulation at 42 CFR 494.70(a) states:
“The patient has the right to–
(1) Respect, dignity, and recognition of his or her individuality and personal needs, and sensitivity to his or her psychological needs and ability to cope with ESRD.”

It doesn’t sound like your last clinic complied with this regulation.


#9

Every facility is turning me down. I just heard today that my records state I got physical. This is news to me. I never got physical. I am being framed.


#10

regulation at 42 CFR 494.70(a) states:
“The patient has the right to–
(1) Respect, dignity, and recognition of his or her individuality and personal needs, and sensitivity to his or her psychological needs and ability to cope with ESRD.”

What does above do for me? How do I get records expunged? Obviously I have no chance and now they made up that I was physical. It’s a lie. Anything I can do?


#11

What did they document about how you “got physical?” Did you reportedly strike someone or did you reportedly move your hand and the staff member took that as you “getting physical?” Who else was in the room with you? If you have an attorney through Dialysis Advocates, the attorney could possibly get at the truth of the encounter. So far as getting your the staff comment expunged, I don’t think there’s any way to do that, but under HIPAA you have the right to request to have your recollection of the event included in your medical record. IMO, it would be best to have an attorney representing your interests rather than trying to do this by yourself. Here’s the HIPAA provision about amending the medical record. https://www.law.cornell.edu/cfr/text/45/164.526


#12

I never hit or touched anyone. A rumor was made that I hit someone and Eveyone assumed because I made verbal threat through my disability that I also hit someone.


#13

Who is assuming – staff at your dialysis clinic who weren’t present during the event or staff at other dialysis clinics? You started this thread almost a month ago and you said you were discharged from a Fresenius clinic in July. Unless you have a fair amount of natural kidney function or you’re getting dialysis somewhere you may be running out of time. What did you hear when you talked with Dialysis Advocates?


#14

In my record they state I threatened them and they heard I am violent and attacked outside of fresenius. This is what’s not true. However they tell this to all the facilities I try to get into.


#15

Have you talked with Dialysis Advocates or with your ESRD Network to seek their help yet? Patients can file grievances with the ESRD Network and they are required to investigate them. You an also file a complaint with your State Survey Agency. You can find your ESRD Network or ESRD State Survey Agency on the Medicare site at https://www.medicare.gov/contacts/. Choose your state and ESRD Network (or ESRD State Survey Agency) from the drop-down menus.


#16

Yes to above. Fresenius is playing games and keeping quiet. I’m sure they know their wrong. Wu


#17

Beth, which facility are you with?


#18

Dialysis advocates is trying but fresenius refuses to get back. They know they were wrong. Yet they want to see me suffer.