Forced to Stop Dialysis. Now What?

[BattleScars]

The never ending saga continues for me. A few weeks ago I thought I was all set but now it turns out I'm being turned away because of red tape and I'm going to have to stop dialysis. For those of you that don't know my situation I'll try to explain it if you can follow but I warn you, it's mega complicated.

Back in June I got fed up with the way I was be treated at my PD clinic so I wrote an email to my nephrologist telling him if he's going to continue to stand by how the nursing staff is being treated I'm going to have to take my care someplace else. I get an email back with a list of local dialysis units that also specialize in PD and him telling me he will only treat me for emergencies for the next 30 days and by then I'll have to find someone else. I also got a nasty certified letter in the mail saying the same thing. I have only been on PD for less than 2 years and never had to transfer so forgive me for being quite naive to how this all works.

I set up an appt with Beth Israel hospital here in Boston with a nephrologist because I've been told they have an awesome kidney transplant program. I explained my situation in detail with the lady making the appt. The only catch was she didn't have any appts available until August. I figured out my next delivery and I figured I had enough supplies to get me by until that appt. So I go to the appt and I'm told I have no appt! WTF?!?! You kidding me!?!? I'm not violent but now I'm about ready to start punching holes in the wall.

Here's the deal, I found out Beth Israel doesn't see outpatient dialysis patients and they don't even have a PD unit. Now you tell me??? Alrighty then.  So now I'm back to square one with less than a week's worth of supplies. I start calling numbers on the list my last nephrologist sent me that email. They almost all lead to a Davita unit. That's fine but I now find out Davita won't even see me without all these tests within the last 30 days but I don't have a doctor. So now I'm at a complete road block. I had a social worker tell me to call Baxter and see if I can get one more order placed but my last CAPD unit placed a hold on my account. The Baxter girl was very nice and called them to see if they would authorize a delivery to get me by unit I get this straightened out and they said "No, because he's supposed to be transferring."

They don't care about their patients health. Even Davita said they are never supposed to stop care without making sure I have care set up someplace else. Now I have to stop dialysis. I don't have a choice. My wife is already contacting a lawyer.

[BattleScars]

Am I wrong here but does this all seem very unprofessional? As my doctor isn't his responsibility to at least refer me to another physician? During that last 30 days he said he would treat me for "emergencies" only he refused to cooperate even authorizing simple med refills. He also wouldn't help me get my medical records transferred. Davita was shocked that they were refusing to send over basic paperwork even with my faxed HIPPA Authorization. Then they started claiming they didn't receive the fax. It wasn't until I called the patient advocacy line that the fax magically appeared. MGH hospital in Boston is THE WORST. If you live in New England I would avoid them if I were you. I have went through 2 years of hell dealing with this hospital.   

[Joe]

I'm flabbergasted that this kind of situation could come up. I don't have and answer for you, other than to do what you are doing to find a new dialysis center. I do wish you the best with your search.

[BattleScars]

I'm flabbergasted that this kind of situation could come up. I don't have and answer for you, other than to do what you are doing to find a new dialysis center. I do wish you the best with your search.

I am too. I'm just curious if anyone else has transferred and their doctors refused to help them get set up with a new unit. I mean no referrals or anything?  Even the patient advocacy lady told me that she didn't think a doctor could just discharge a renal patient without proper follow-up care. Had he at least referred me that situation with Beth Israel could have been avoided all together.   

[Alex C.]

Send your doctor a certified letter, mentioning that you will be contacting the State Medical Board with a complaint of malfeasance. If THAT doesn't get you action, then sue his @$$ for malpractice.

[BattleScars]

Send your doctor a certified letter, mentioning that you will be contacting the State Medical Board with a complaint of malfeasance. If THAT doesn't get you action, then sue his @$$ for malpractice.

I did contact a lawyer today and he referred me to the State Medical Board. But as for malpractice he said generally it's not malpractice because no harm has been done. Well I guess that true for now. I wonder if he's say that when I'm off dialysis for a few weeks? I left a message with the state board.

[BattleScars]

BTW, just in case someone is reading this after wondering how to transfer to a different unit I have a little advice. Learn from my mistake. Make sure you have a unit to go to, like get set up completely and make sure you are accepted and ready to go before you tell your drs or nurses you are leaving. I know this should be common sense but I wasn't so smart and I'm paying for it now.

I feel like in life, I'm in a staring contest with a person with no eyelids. I can't win.

[Willis]

Ummm...I'd say that the first day you are unable to do dialysis constitutes an emergency. I (or an attorney) would be calling that nephrologist until he took care of things in a legal and proper way.

Now that may mean your only option would be in-house HD and I'm not sure what leverage you'd have to avoid that. Unfortunatly, most of us on dialysis are there at the mercy of the gov't and medical community. 

 

[obsidianom]

I am a physician and am constantly reminded by my malpractice insurance company that I cant just disharge a patient without a long list of protocols including arranging or helping the patient to a new doctor to continue care. IT IS ABANDONMENT for a doctor to drop you without assurance you have proper follow up .If you suffer any consequances from this you do have a malpractice case.
In the meantime you should WRITE  a letter to the state medical board documenting this case of ABANDONMENT . Send a COPY to the doctor who is dropping you. You could show up at his office with the copy and demand to see him and show him the letter to get your point across. A complaint to a medical board can come back to haunt him for the rest of his career and HE KNOWS IT. It will be reported in a registry forever. It becomes public record. He wont want this. It could harm his career.
You could also use a lawyer to write a letter for you about his abandomnent and add to your firepower.
Dont accept this . He has a legal and ethical responsibility to you. My malpractice company basically lets us know it is llike a marriage . We cant just walk away without a lot of steps and like with children , "child support" . He has to make sure you are "supported"' or in a sense taken in by a proper doctor to follow you.
Good luck.

[jeannea]

Someone recently reminded us about dialysisadvocates.com. You could call them. Also at the top of the general discussion board there's a sticky thread about where to report problems with care. Call them. Call the medical board. Have your attorney call people. Then keep in touch with that Davita clinic that sounded like they would help you. See if they can set up an appt with a doc then throw yourself on his mercy and see what he can do for you. You know you made a mistake so the only thing to do now is work on finding care.

[Rerun]

Call Arlene at www.Dialysisadvocates.com 1.800.847. 8842

They can't just dump you and let you die.  Unfortunately, dialysis patients only have a few days to fight and then they are quiet.  This is happening more and more. 

I would also ask your PD friends if you could borrow supplies.  They could just say they had to dump a few bags because they looked bad or something. 

Remind us where you live and maybe someone on here would be willing to help you get supplies until we get this figured out.

God Bless!     

[Bill Peckham]

This is called involuntary discharge, this happens more than you'd expect, you need to contact your network as soon as possible. Yours is the Network of New England:

Phone:   203-387-9332
Toll Free Patient Line: 866-286-ESRD (866-286-3773)

Here is a PDF of what needs to happen from the Network point of view http://www.esrdnetwork6.org/utils/pdf/annual-meeting/2012/IPDFinal.pdf  this should help to understand the exact process but before you do anything else call the Network.

[cdwbrooklyn]

BattleScars, I’m so sorry for what you are going through.  However, I have some questions.  In your letter to your kidney doctor, did you use any foul language?  Telling a doctor you want to take your care somewhere else gives him a chance to twist your words around.  He sees it as you want to transfer to another center.  Anyhoo, did you ever use any foul language toward the staff when you were frustrated?  If so, they may have written a case against you.  In order to transfer to another center successfully, you have to change doctors.  When you change your doctor, the center has no choice but to accept you because of your doctor.  Now, this can be tricky because the administrator at the new center will contact the old center to get your paper work.  That will give the old center a chance to bad mouth you and tell the new center you are a trouble patient and they felt their lives where in danger.  Even thought it may not be true.

Did you threaten any of the staff while frustrated?   If so, it can impact you transferring to another center.  There is always someone in the old center who knows someone in the new center you transferring to. They can tell the new center you are a dangerous patient that will attack the staff verbally and physically.  Maybe that can be one of the reasons you didn’t have an appointment, especially if you made the appointment over the phone with the new center.  The new center will not tell you that someone talked bad about you but they will react to what they were told.

Once a new center takes you, as other posts mention, they cannot let you go unless you have another place to go.  However, once the new center hears bad thing about you, they will not accept you because they don’t want that type of problem.   If that is the case, you will have a big problem because when you do call the state, they will investigate and that’s when you will realize your center build a case against you twisting your words around starting from the date you started to have problem with them. 
We all signed a contract regarding mistreating the staff by cursing and threaten to body harm them which can lead to a dismissal with or without being transferred. 

So be careful how you present yourself but try to see if the center has a case against you.  Is there someone you can talk to that you are on good terms with?  If so, talk to them and see if the center has written a case against you.  If so, you may want to take it to your lawyer and get his or her advice as to how to rebuttal the written case against you.

Keep me posted. 

[Rerun]

Isn't that selective murder?  If I had to quit dialysis I might last 8 days and be of no mental use after 5. 

He needs to get some supplies so he can live long enough to get a new place. 

[BattleScars]

Thanks everyone for all the advice. I have good news but it wasn't easy to get the help I needed. Where do I even start? I spent a good portion of the day yesterday on the phone. Again, I partially blame myself because I thought everything was all set and you should never assume anything. The worst thing a person on home dialysis can do is wait until they only have a few days worth of supplies to find out they have no place to go or a doctor to oversee their care. It was almost the perfect storm of everything going wrong that made this all so complicated.

I called the director of patient advocacy at MGH and she was extremely rude right off the bat. This office has never helped me. Any time I have called in they all act like doing any kind of work or listening to a patient complaint is going to kill them. I have actually never dealt with anyone so rude in my life as these people and I've spent hours on the phone with companies like Comcast in my life so that should tell you something. It's just shocking that they of all people take patient care so lightly and treat people worse than anyone else in the system. It makes no sense. I wanted to scream at this lady but I held it together and just bit my own tongue. I did my best to remain calm and explained my situation. She rudely told me she would look into it and would call me back. I was on the phone with someone else when she called back so she left a rude message. It was short and basically said that she talked to my former CAPD unit and they said my transfer to Davita was done and that I was all set. Good luck at Davita and she hung up. But at that point I wasn't all set at all. When I tried to call her back I could tell she was screening my calls. I know I could call from a different/or blocked number but had better things to do with my time and didn't feel she would help me anyways.

I called the state medical board? I believe that's what it was. The lady there was extremely nice and helpful, although she let me know right away that she could help me make a complaint but couldn't actually intervene to make them order my supplies. She gave me a lot of good advice and kinda reminded me of my mom or something. I wish everyone could just be that respectful and understanding. At the end of the day she couldn't do a lot at the moment to help me but sometimes people just need someone to listen to their problem and maybe just shoot a few ideas back and forth. Most people just don't have the time or the people skills to do that much. She's sending me a complaint form in the mail.

I don't remember if I mentioned or not but earlier in the day I wrote a stern but respectful email to my former nephrologist. Someone else was asking if I ever swore at him or used foul language? I didn't but sometimes challenging a doctor in any way can feel like an attack or a threat to them and then they are unwilling to help you at all so you still have to be very careful with the words you use and what you say. I learned a lesson there. This time however the damage had already been done so I let him know what I really thought. Again, didn't use foul language but I let him know what he did was wrong and that he should have made sure I had care before discharging me like that.

I had exhausted pretty much all my options for the day and talked things over with a few dialysis clinics. It was looking like my only real option was going to be to head to the ER to get treatment and referrals. Finally about 2pm I got a call from my former PD unit. It was a nurse I had a great relationship with. She was the one lady I loved going in and seeing she was the one working. I knew I could talk to her. She couldn't do a lot for me but she sounded like she genuinely wanted to help me. I was surprised a little bit later to get another call from another nurse at the PD unit and she told me they were ordering me 3 weeks worth of supplies from Baxter to help me with the transition to Davita. Finally! Music to my ears! She was also sending a form for me to get the labs I need to get accepted by Davita. I'm still a little confused as to wear I'm going to get the labs because according to Davita rules they won't even allow me to step in their doors without the hepatitis and TB testing. But I know it will get done and this time I'm getting all this done now BEFORE I even get close to running out. Everything else should be all set. I've never been in a Davita clinic, I've heard good things and bad. All I know is I need to continue my treatment somewhere.

I honestly started the day yesterday prepared to go without dialysis for at least a few days. I do have some kidney function and urinate a lot for a dialysis patient so I figured I could survive a little while. We don't know how long but weeks maybe? Months? I'm glad I didn't have to find out. I don't know which step I took yesterday helped finally get the ball rolling. Maybe it was a combination of everything. I'm sure my former neprologist didn't want to be held liable. It does pay to be persistent and proactive.     

[BattleScars]

This is called involuntary discharge, this happens more than you'd expect, you need to contact your network as soon as possible. Yours is the Network of New England:

Phone:   203-387-9332
Toll Free Patient Line: 866-286-ESRD (866-286-3773)

Here is a PDF of what needs to happen from the Network point of view http://www.esrdnetwork6.org/utils/pdf/annual-meeting/2012/IPDFinal.pdf  this should help to understand the exact process but before you do anything else call the Network.

Thank you for this information. I don't need it now as I was able to get a few weeks worth of supplies while I transfer to Davita but I will keep this number handy just in case for the future. I'm putting it in my phone and saving the link.

[BattleScars]

BattleScars, I’m so sorry for what you are going through.  However, I have some questions.  In your letter to your kidney doctor, did you use any foul language?  Telling a doctor you want to take your care somewhere else gives him a chance to twist your words around.  He sees it as you want to transfer to another center.  Anyhoo, did you ever use any foul language toward the staff when you were frustrated?  If so, they may have written a case against you.  In order to transfer to another center successfully, you have to change doctors.  When you change your doctor, the center has no choice but to accept you because of your doctor.  Now, this can be tricky because the administrator at the new center will contact the old center to get your paper work.  That will give the old center a chance to bad mouth you and tell the new center you are a trouble patient and they felt their lives where in danger.  Even thought it may not be true.

Did you threaten any of the staff while frustrated?   If so, it can impact you transferring to another center.  There is always someone in the old center who knows someone in the new center you transferring to. They can tell the new center you are a dangerous patient that will attack the staff verbally and physically.  Maybe that can be one of the reasons you didn’t have an appointment, especially if you made the appointment over the phone with the new center.  The new center will not tell you that someone talked bad about you but they will react to what they were told.

Once a new center takes you, as other posts mention, they cannot let you go unless you have another place to go.  However, once the new center hears bad thing about you, they will not accept you because they don’t want that type of problem.   If that is the case, you will have a big problem because when you do call the state, they will investigate and that’s when you will realize your center build a case against you twisting your words around starting from the date you started to have problem with them. 
We all signed a contract regarding mistreating the staff by cursing and threaten to body harm them which can lead to a dismissal with or without being transferred. 

So be careful how you present yourself but try to see if the center has a case against you.  Is there someone you can talk to that you are on good terms with?  If so, talk to them and see if the center has written a case against you.  If so, you may want to take it to your lawyer and get his or her advice as to how to rebuttal the written case against you.

Keep me posted.

I didn't swear at my doctor but I may not have been careful with how I said things. Like I was saying before, even if you just threaten to call the state medical board or threaten to sue or anything they can take it as a personal attack or a threat and then refuse to help you. Hopefully none of this will follow me and Davtita will give me a fresh start. If anything I've learned a lot as a dialysis patient the past two years. I've def made mistakes a long the way that I think I've learned from so hopefully my future treatment will go a lot more smoothly. One thing I learned is no matter what be careful not to overreact, even if you think you've been wronged or are being treated unfairly because like you said they can just twist your words around or label you as a problem patient. It's best to think very carefully about how to react and choose your words wisely. We are at their mercy.

[BattleScars]

Call Arlene at www.Dialysisadvocates.com 1.800.847. 8842

They can't just dump you and let you die.  Unfortunately, dialysis patients only have a few days to fight and then they are quiet.  This is happening more and more. 

I would also ask your PD friends if you could borrow supplies.  They could just say they had to dump a few bags because they looked bad or something. 

Remind us where you live and maybe someone on here would be willing to help you get supplies until we get this figured out.

God Bless!     

Those are some good ideas. I do know one guy locally that is also using Baxter but he uses a different setup for nocturnal PD I think. But that's also a good idea. I think it would be helpful to network with other dialysis patients locally just in case something like this ever comes up again. I would be willing to donate a few of my supplies to someone that needed them in an emergency. I also saved that number you gave me. Thanks I appreciate it. 

[cdwbrooklyn]

Absolutely BattleScar that’s why I keep it professionally.   When I was in-center and got into an arguments with the staff, I did not use foul language and threats.  One day when I was talking to a nurse and tech, they were telling me that my arguments are based on someone doing something wrong.  Because I did not use foul language or threats, it help the person to realize his or her mistake.  However, there were cases where the state was called to warn a patient of his or her actions because she or he used foul langauge and threats.   Also, you are right as to be careful about the words you choose, which I tell this to my daughter all the time. 

I’m glad I’m doing it at home because I hate the feeling being at the staff mercy.  It use to make me very angry inside and I’ll go home and yell at my daughter for no reason.  She’s happy I don’t do that any more.

So happy things worked out!!!! 

[BattleScars]

Absolutely BattleScar that’s why I keep it professionally.   When I was in-center and got into an arguments with the staff, I did not use foul language and threats.  One day when I was talking to a nurse and tech, they were telling me that my arguments are based on someone doing something wrong.  Because I did not use foul language or threats, it help the person to realize his or her mistake.  However, there were cases where the state was called to warn a patient of his or her actions because she or he used foul langauge and threats.   Also, you are right as to be careful about the words you choose, which I tell this to my daughter all the time. 

I’m glad I’m doing it at home because I hate the feeling being at the staff mercy.  It use to make me very angry inside and I’ll go home and yell at my daughter for no reason.  She’s happy I don’t do that any more.

So happy things worked out!!!! 

You are absolutely correct. It's taken me most of my 40 years to realize reacting doesn't get you anywhere. It's best to step back when you feel overwhelmed and calm down and access the situation before reacting to a person or situation, that way you don't say something you'll regret later. I've gotten to the point if I'm upset I just don't pick up the phone, I'll do it later, because I'm not good on the phone at all, if I have to I'll even have my wife make calls for me . It's almost like driving in a car. It's easy to get mad at someone because you don't see their face and if they have a nasty tone it's easy to have a nasty tone back. Overeating doesn't really get you anywhere, most of the time it just makes the situation worse. I could have used your advice years ago, it would have saved me so much grief that I caused myself over the years

[cdwbrooklyn]

It’s okay BattleScars we learn as we get older.  Only if I was told some things, I wouldn’t have learned the hard way myself.   No worries, you are going into a new center so you can start over there.  After a few weeks, things will be less stressful and more smoothly.   We all learn from our mistakes. Believe me, I’ve made so much mistakes and sometimes I wish I can do it all over again with the knowledge I have now.

[Riki]

Call Arlene at www.Dialysisadvocates.com 1.800.847. 8842

They can't just dump you and let you die.  Unfortunately, dialysis patients only have a few days to fight and then they are quiet.  This is happening more and more. 

I would also ask your PD friends if you could borrow supplies.  They could just say they had to dump a few bags because they looked bad or something. 

Remind us where you live and maybe someone on here would be willing to help you get supplies until we get this figured out.

God Bless!     

Those are some good ideas. I do know one guy locally that is also using Baxter but he uses a different setup for nocturnal PD I think. But that's also a good idea. I think it would be helpful to network with other dialysis patients locally just in case something like this ever comes up again. I would be willing to donate a few of my supplies to someone that needed them in an emergency. I also saved that number you gave me. Thanks I appreciate it.

People who use the cycler at night usually still have a few twin bags on hand.  They may do a day exchange, or keep them for emergencies.  I used to use them for medication, because I didn't like putting medication in the bigger bags.  It was more comoplicated. *L*

[Hemodoc]

About a month and a half ago, I transitioned from Kaiser in CA to FMC here in Idaho. I started calling FMC in early May. By the beginning of June, the FMC unit said it was all ago. However, about a week before starting on July 1, the unit said they had big problems with my insurance. I transitioned from Kaiser to Group Health effective also on July 1. The financial coordinator got Kaiser approval that went through quickly but they paid no attention to the fact that I had told them repeatedly that they had to go through Group Health not Kaiser.

My Group Health went through quickly and I had my coverage set up by early June with Group Health cards in hand at least 3 weeks before I needed them. When I got up to Idaho in mid-June, I took my Group Health card to the unit. They stated all was well.

When I went to set up my first clinic visit and order supplies, they stated there were big problems. It appears that the FMC financial coordinator did NOT contact Group Health and later found out that Kaiser coverage was ending. They were NOT going to accept me as a patient with me having only about 2 weeks of supplies left. (Had they notified me in time, I could have got 6 weeks of supplies from Kaiser before the end of June, but by the time they informed me of the "problem" it was too late to get the Kaiser delivery.)

I called the financial coordinator directly and she was very confused about what my insurance coverage was and when it would begin.  I asked for her supervisor. She sent me to Kaiser in Arizona to the folks that deal with self pay figuring Group Health would not cover my home dialysis. The self pay folks were perplexed why she couldn't get the simple approval.

After two days, the lead supervisor for financial approval for FMC called me and stated all was taken care of and that the folks here should have been able to do the approval themselves.

I waited a few days to here from the unit here. When they called, they acted like as if THEY had done the work to get the approval when in fact I had done it myself.

The current dialysis providers in America do not take care of their patients with the same professionalism and care that the rest of American medicine does or at least did while I was practicing before 2007. The risk of involuntary dismissal issues in America are just one more symptom of this dysfunctional system. Until American dialysis patients  understand their legal rights in health care and demand that the nephrology community honor informed consent, avoiding abandonment and other such issues, then this system will continue to fail to uphold their fiduciary duties to their patients. In other words, we need more accountability that can only come by keeping our legal rights intact. It is time to stand up and take a stand. Providing clear transitions is part of the legal obligation of all physicians and that applies still to dialysis as well.

[obsidianom]

Thank you for that info to all people here on the whole legal /abandoment issue. Everyone here has to KNOW thier rights.
I have had so many written and oral(seminars) discussions with my medical malpractice company about this whole issue. We as physicians actually are in some ways at the whims of patients . The problem is the patients dont actually KNOW this and what their rights are. As doctor and patient and patient care giver I see both sides.
My malpractice company actually told us in writing that if a patient misses a visit it is MY responsibility as a doctor to try to contact the patient and try to get them back to follow up on care. In effect the burdon is on me as a doc. If I dont try to follow up and they have a negative outcome, it is MY resposibility. I am constantly getting info from them on abandonment of patients. I could lose my license and be sued.
Bottom line is that as patients and care givers here we should know that doctors cant just discharge us without a long list of follow up protocols and responsibilities for us. If we always remember that we can equalize the power dynamic. Informed consent is still the legal guarantee WE are in charge of our treatment. Doctors need our absolute informed consent for ANYTHING they do. They cannot play the power game of "I will discharge you if you dont do it my way."
Remember your rights and dont hesitate to throw them in the faces of arrogant medical people.
I just ran into this yesterday with my wife in our monthly cliinc for home dialysis . Our nephrologist HATES buttonholes and tried over and over to talk us out of using them. We refused to back down and he threatened to talk to the whole "team" about whether they were "comfortable " with us doing it. WE talked to the nurses ahead of time and worked with the social worker to see our side and our RIGHTS as patients. We won . He wont stop us. BUT IF WE HADNT KNOWN OUR RIGHTS HE WOULD HAVE BULLIED US. He sure tried 5 times to threaten us with DEATH from buttonholes. (I guess its a new form of capital punishment for malcontent dialysis patients)
Dont get walked on by doctors and nurses. KNOW YOUR RIGHTS. Patients have power but dont often know it.

[Hemodoc]

Nephrologists in dialysis centers walk by completely different rules than the rest of medicine. It was quite shock to see that in person when I started on in-center hemo. It is time that they adhere to the same rules and regulations as the rest of medicine. Unfortunately, it appears that the rest of medicine is becoming more like the dialysis centers instead of the latter.