Questions about equal or reasonable access to dialysis care

[Triker]

There is a local dialysis clinic in my town. They operate on mon, tues, & fri. I have to go to another center, about 30 minutes away when I require extra treatments. The other clinic is open all days but sun. Both clinics are Davita. I wish our clinic was open 6 days a week, but I accept that as the price I have to pay for going over on my fluids. It was my belief, that the charge nurse often threatened me, by telling me that the other clinic was full, and that she could only schedule me for an extra treatment at another clinic about 2 1/2 hours away. I say this because one time I was told it was full, and I called them myself. When I was seated for the afternoon shift there were 3 chairs left open, and remained open until the shift was done. I don't believe she falsely threatens me now. Still there times when I think the other clinic is really full. I went to the one 2 1/2 hours away once, but vowed to never do it again. When it has been offered I tell them that I just won't do it. There are two other clinics about 30 minutes away, but due to company regulations, misc. red tape, government regulations, and who knows what all else, I can't go to a clinic more accessable. It seems reasonable access would be regulated too! Also, if I had a problem with my neurologist, and wanted to change, I would have to go to another clinic. How can this be changed?

[Sluff]

Contact your insurance carrier and explain your dilemma and if you did that with no success it would probably take an act of congress to get anything changed.( being sarcastic)

[Triker]

My insurance is medicare, plus BC/BS supplement.  I don't think that insurance is a problem. I feel certain that medicare would pay for an extra treatment at another facility. There are so many politics involved between doctors, companies (providers), & government regulations. I don't know where to begin. Davita doesn't want to send you to non-Davita clinic. There is the question of transferring records from one facility to another. A doctor has to see you to treat you, and if you go to another clinic where he doesn't go, you need another doctor. (at least that's what I'm told) Otherwise, it would be practicing medicine without a license. If you go on a vacation, you can go to another clinic, seems like a contradiction to me.

[Sluff]

My insurance is medicare, plus BC/BS supplement.  I don't think that insurance is a problem. I feel certain that medicare would pay for an extra treatment at another facility. There are so many politics involved between doctors, companies (providers), & government regulations. I don't know where to begin. Davita doesn't want to send you to non-Davita clinic. There is the question of transferring records from one facility to another. A doctor has to see you to treat you, and if you go to another clinic where he doesn't go, you need another doctor. (at least that's what I'm told) Otherwise, it would be practicing medicine without a license. If you go on a vacation, you can go to another clinic, seems like a contradiction to me.

Well unfortunately it comes down to money somewhere someone is not getting their share. It's medical politiics. Tell them your going on vacation 30 miles away and you will use the other clinic while you are there..ha I know I'm being sarcastic again but i really don't know how all that works either.

[BigSky]

Not sure how good a unit is if it is only open Mon, Tues and Fri as you say.  Most patients go every other day for treatment.

Just what is your schedule?

Medicare pays for 3 dialysis sessions a week unless a doctor orders more as being absolutely medically necessary.  So I am not sure by what you mean when you say "extra" sessions.  More than the 3 allowed by Medicare or what?

[thegrammalady]

all a clinic does when you travel is fax run sheets to the clinic where you will be, it shouldn't matter how far away that is. i've even carried mine with me. to my knowledge there are no governmental regulations against it. If your doctor says you need an extra treatment and your center is full or closed there shouldn't be any problem with medicare. as far as finding a new doctor, he/she may or may not want you to switch units. question his reasons for selecting a specific unit, you may find you agree.

[kitkatz]

You need to call the inurance company and tell them they are screwing around with your health. 

[Triker]

Not sure how good a unit is if it is only open Mon, Tues and Fri as you say.  Most patients go every other day for treatment.

Just what is your schedule?

Medicare pays for 3 dialysis sessions a week unless a doctor orders more as being absolutely medically necessary.  So I am not sure by what you mean when you say "extra" sessions.  More than the 3 allowed by Medicare or what?

My bad. They are open mon, weds, & fri. I go on tues. to get rid of the extra from the weekend. "More than 3 allowed by medicare?" Somebody pays for it, not me. I've been going 4 times a week for a long time. They haven't let me die yet.

[livecam]

You mentioned that you need that 4th treatment because you have been going over your fluid limits regularly.  Medicare pays for 3X a week incenter treatment.  If you as a patient are going to be so noncompliant that you often need a 4th treatment in a week just who should be responsible for that?  I think the nurse who said the distant clinic was the only one available is really trying to get you to pay more attention to fluid intake.  Dialysis is expensive.  Fitting extra treatments into already busy center schedules is both costly and disruptive to the other units. Requiring extra treatments is not the norm for the majority of dialysis patients.  Units don't necessarily have to provide them.  Better watch your intake and get compliant if you want to live long.

[Triker]

all a clinic does when you travel is fax run sheets to the clinic where you will be, it shouldn't matter how far away that is. I've even carried mine with me. to my knowledge there are no governmental regulations against it. If your doctor says you need an extra treatment and your center is full or closed there shouldn't be any problem with medicare. as far as finding a new doctor, he/she may or may not want you to switch units. question his reasons for selecting a specific unit, you may find you agree.

 

A doctor only comes around about once a month, and I've been told by the charge nurse where they can send me. Apparently, the doctor must be approving the additional treatments. Maybe there is extra money to the doctor for extra treatments, and they don't want me going to a clinic where they aren't somehow associated. I'm surprised medicare, and BC/BS doesn't throw a fit.

I'm considering moving, I may find that things are different then, and have to learn to comtrol my fluids better. (not that I don't try, but I'd HAVE to do better) When I first got off PD, I went 6 days a week at times. It was a big shock getting used to the fluid restrictions going from PD to Hemo.

[Triker]

You mentioned that you need that 4th treatment because you have been going over your fluid limits regularly.  Medicare pays for 3X a week incenter treatment.  If you as a patient are going to be so noncompliant that you often need a 4th treatment in a week just who should be responsible for that?  I think the nurse who said the distant clinic was the only one available is really trying to get you to pay more attention to fluid intake.  Dialysis is expensive.  Fitting extra treatments into already busy center schedules is both costly and disruptive to the other units. Requiring extra treatments is not the norm for the majority of dialysis patients.  Units don't necessarily have to provide them.  Better watch your intake and get compliant if you want to live long.

I have to agree, up to a point. The fact is, it's never been explained to me that way. Rather than playing games sending me to far off places and threatening me, just give me the facts. I'm a big boy. LOL! I've never been told that medicare normally only pays for 3 treatments a week, and I could be responsible for the extra treatments.  All the same, my original question was about equal access, not just for me, but for others that may occasionally need an extra treatment. It stills happens that they are sent to a far off clinic when a much closer one is available, and some of them don't even drive, requiring a driver. It doesn't seem the best way to provide care.

[livecam]

If it has never been explained in that way maybe you DO need to change units.  Those are the most basic facts of dialysis.  No, they aren't going to make you pay for an extra treatment but treatments are funded based on 3X a week.  The whole subject of extra treatments is a touchy one and I'll tell you why.  Many units are just full to the point that they don't have any extra capacity.  To give you an example I tried several times to arrange dialysis in my home town back in NY.  They could never do it because they had no extra capacity for visiting patients.  Units expand when they have to but many of them do operate completely full which means 3 shifts, 6 days per week.  They have to worry about machines breaking down, people calling in sick, and that kind of stuff just like any other business.  I don't know if it is about equal access or just operating at full capacity. 

I'm sorry if the importance of fluid lmiits wasn't explained.  On hemo it is very important because your tolerances in terms of fluid and food intake are much tighter than they are with PD.  People who overload on hemo can get into trouble fast...not just feeling bad but life threatening stuff can happen.  I've heard that death from fluid accumulation in the lungs is similiar to drowning...you don't want to go there.  The best thing you can do is to try to be more compliant and if you aren't listed for transplant yet, make that happen.

[DeLana]

In general, Medicare will only pay for 3 tx/week; however, anyone can need a fourth one once in a while due to fluid overload, and this can be arranged (and paid for) with a doctor's order.  However, this should not occur on a regular basis!  Yes, I have seen patients who were allowed 4 treatments per week for medical reasons (usally, because their labs were temporarily bad due to a poorly functioning temporary catheter), but rarely for fluid noncompliance (only if the doc got tired of getting called into the ER in the middle of night too many times because the patient was there in pulmonary edema...) 

Your nurses and nephrologist should have explained all of that to you.  Sending you to other clinics without doing so is just bad practice.  Of course, clinics don't like to have 4 day/wk patients (unless they have low capacity) because they take up two slots - they could run another patient instead of doing a fourth treatment.

I can't blame you for wanting to change nephrologists - but they may have a set-up like our local clinics, where each doc is assigned to a clinic, so the only way to change docs is by changing clinics.

Good luck to you,

DeLana

P.S.  Chronic fluid overload is NOT a good thing, even if you can successfully remove it without any obvious signs of damage (such as shortness of breath caused by pulmonary edema); it will damage your heart, and if long-standing, lead to congestive heart failure and premature death.

[bluedove57]

My clinic allows only 3 treatments a week cause it is completely full. I travel 1 1/2 hours to get to my clinic.That's 3 hours of travel per treatment. The next nearest one is 4 hours away. Any new patients as of now will have to travel 4 hours. Miss a treatment and you have to wait for your next treatment. Even the hospital doesn't have dialysis machine. If you land in the hospital you are transported by ambulance to the clinic. In Florida we were allowed 3 treatments a week. If we needed more we had to go to the hospital and say you couldn't breath, then they would give you a treatment there. Fluid overload is easy to do but harder to take off.

[stauffenberg]

Whether a patient has an adequate Kt/V is a function of the patient's size, so some very large people (not necessarily overweight, just extremely tall, large build, big boned individuals), would get a lethally low Kt/V on just three treatments per week.  There should certainly be a special policy to take care of their needs.  In Canada, where I live, all dialysis treatment is provided free by the government, so no one worries if a patient for any reason needs to come in for extra treatments, whether because of too much fluid consumption or having too large a natural body mass.

It should be pointed out that the reason that fluid restriction so severely reduces the quality of life of dialysis patients, and the reason it is a threat to health, is because patients are restricted to three hemodialysis treatments a week.  So why blame the patients for non-compliance if they gain too much fluid weight, since it unreasonable in the first place for the 'system' to require people to endure the torture of unbearable thirst for the rest of their lives because the government doesn't want to tax rich people enough to pay for Medicare providing four dialysis sessions a week?

[billoggblog]

I know for a fact that renal units in the UK only allow 3 visits per week, and are VERY strict about fluid intake.
Where I live, their are no other units for 70 miles, and you can only go to another unit while on holiday in that area.  If you don't like your unit TOUGH!  It's not great, but, thats how it is over here.

Good Luck.
Bill.

[glitter]

I know for a fact that renal units in the UK only allow 3 visits per week, and are VERY strict about fluid intake.
Where I live, their are no other units for 70 miles, and you can only go to another unit while on holiday in that area.  If you don't like your unit TOUGH!  It's not great, but, thats how it is over here.

Good Luck.
Bill.

so what do they do if your fluid gains are consistently high?

[Triker]

Good points. It doesn't help me much though. I'm 6'6" and apparently require more dialysis than the average bear. When I did PD, I had to use an unusual amount of dialysis fluid, and 10 hours, plus another manual exchange daily just for my adequacy. As it is, 4 days a week on hemo, my adequacy just meets the minimin. Maybe, that's how I get away with doing 4 treatments. I'm not trying to find excuses, I'd like to find solutions. I would give anything to try the NxStage, but can't just go to the store and get myself a partner. I think I'll make an appointment to see my nephologist. She comes to my clinic, and makes rounds monthly, but if you what to discuss anything of more than the usual, you need to make an appointment.

Whether a patient has an adequate Kt/V is a function of the patient's size, so some very large people (not necessarily overweight, just extremely tall, large build, big boned individuals), would get a lethally low Kt/V on just three treatments per week.  There should certainly be a special policy to take care of their needs.  In Canada, where I live, all dialysis treatment is provided free by the government, so no one worries if a patient for any reason needs to come in for extra treatments, whether because of too much fluid consumption or having too large a natural body mass.

It should be pointed out that the reason that fluid restriction so severely reduces the quality of life of dialysis patients, and the reason it is a threat to health, is because patients are restricted to three hemodialysis treatments a week.  So why blame the patients for non-compliance if they gain too much fluid weight, since it unreasonable in the first place for the 'system' to require people to endure the torture of unbearable thirst for the rest of their lives because the government doesn't want to tax rich people enough to pay for Medicare providing four dialysis sessions a week?