BilI contacted our clinic head and this is what he said.
I think it is in CMS Conditions for
Coverage and/or NYSDOH Accreditation restrictions that there must be
either a ‘staff assisted’ or trained assist to help a patient dialyze at
home. We had to submit and display how we can ‘remotely staff assist’
home patients to dialyze safely. There were many other elements we had
to follow, log, educate, etc to comply with NYSDOH rules on this before
we started back in 1998.
Does this help?
Pat
I am very familiar with the previous Conditions for Coverage from CMS, although somewhat less familiar with the new ones. I have spent hours and hours going through the new CfCs, particularly those directly applicable to clinical care. I did this in preparation for a meeting in Baltimore last year, which was an intensive discussion of how the new regulations would be surveyed. I’ve never seen or heard anything to suggest it is a CMS rule and certainly NKC, like Rubin, does not cut any regulatory corners.
This leaves the NYSDOH. Now it isn’t entirely clear what regulatory authority the NYSDOH has over a Medicare chartered operation beyond the survey responsibility (which is guided by the CMS CfCs). Looking at the NYDOH site there is not any easily identified information concerning home hemodialysis - there is one search result that contains both terms, a PDF of the relevant rate codes.
So Pat no I am not satisfied with the answer you were provided. I have a deep respect for the Rubin Center but I can not accept that vague response as definitive. If there are rules then they must be published, the rules have to have some standing in law. I don’t doubt NY State has their own ideas about things, I just want to see the language and the framework under which these ideas are implemented.
Dialyzing alone at home is quite a delicate issue and persoanlly I do think its a high risk for both the clinic and associations. How would the community feel that one of our home dialysis members died while on dialysis alone at home and only if there was someone watching he/she could have still be alive today. Who takes the fault then? Do we sue the clinic and or associations…Would you happily sign a waiver?
How does the community feel when 2 or 5 or 10 people for every hundred people on dialysis, die while on conventional incenter dialysis and if only they were getting a proper dose of dialysis at home, even if at home alone, he/she could still be alive today?
Dialysis isn’t deadly, CKD5 is deadly. Hemodialysis treats CKD5. Access to sufficient hemodialysis should not depend on ones zip code or marital status/living arrangements.
Bill, you didn’t give an accurate answer. Generally speaking more frequent dialysis is good, but how would you solve the dialysis alone issue at home?
How would the community feel that one of our home dialysis members died while on dialysis alone at home and only if there was someone watching he/she could have still be alive today. Who takes the fault then? Do we sue the clinic and or associations…Would you happily sign a waiver?
[quote=Bill Peckham;16636]How does the community feel when 2 or 5 or 10 people for every hundred people on dialysis, die while on conventional incenter dialysis and if only they were getting a proper dose of dialysis at home, even if at home alone, he/she could still be alive today?
Dialysis isn’t deadly, CKD5 is deadly. Hemodialysis treats CKD5. Access to sufficient hemodialysis should not depend on ones zip code or marital status/living arrangements.[/quote]
Gus I would assume people would feel the same way they feel when anyone dies doing what they intended to be doing. People die while hunting, hiking, swimming, even walking alone. And one can imagine that if they had been accompanied maybe things would turn out different. However, adults get to make these decisions for themselves and adults live and die with the consequences. Adults are responsible for their own decisions.
However, I dispute that my initial answer was not accurate or was evasive. My initial answer stands and is spot on - it is absurd to worry about what might happen while ignoring what is happening. It is not the community’s job to fret about how I conduct my life and/or my renal replacement.
We have had posters who were on this site die. Maybe you don’t recall ,EPOMAN, LeafSunBear just to name two off the top my head… Gus I’m 51 If I want do dialysis on my own I will, it was a A---- wipe dr that put me on dialysis without my or my wife’s consent. And I’m told by Davita and the not the dr but a manger for the dr 's group that I just be happy and deal with it. Gus I didn’t fight my whole life overcoming spina bifda just to have some dr in his 30’s make the call for me on how I will live my life. While with davita which was the worse center, just like Rich said, a day or so before the state was comming I find it funny how these centers hear aheard of time. The nurses and techs came around have everyone sign paper work that we had been taught what to do in case of a fire. The only thing I saw on fires was the paper I was told to sign or else. It took a dr to step in between me and the head nurse. We or at least I was more than willing to confront someone that theaten to cut the tubes right there and then. Davita was well aware of my stand if it meant going home and dieing so be it. My new center a non profit also knows my stand. Gus I have lived a lot longer than I could have dream. So I have nothing to lose, if I’m push I will come home and I will go into crash mode and I will get everyone I know to record for youtube so the whole world can see how this country has gone from one of greatest to one that I really don’t want to be around that long to see where it going, it isn’t going to nice.
Don’t mis read this I’m not mad, I just telling it lke I see it, I have no real hope for this country down the road. And it not due to people not working hard to make things better. But there are some in this country that would be happy to see it like pre war Germany in the 20’s and 30’s. Where we do away with the sick or those unable to care for themselves.
Bear with my spelling etc, it been a long day (5 am east maybe 9 pm)
[quote=bobeleanor;16639]Hi Folks
Right On Bill and Rich
Gus
We have had posters who were on this site die. Maybe you don’t recall ,EPOMAN, LeafSunBear just to name two off the top my head… Gus I’m 51 If I want do dialysis on my own I will, it was a A---- wipe dr that put me on dialysis without my or my wife’s consent. And I’m told by Davita and the not the dr but a manger for the dr 's group that I just be happy and deal with it. Gus I didn’t fight my whole life overcoming spina bifda just to have some dr in his 30’s make the call for me on how I will live my life. While with davita which was the worse center, just like Rich said, a day or so before the state was comming I find it funny how these centers hear aheard of time. The nurses and techs came around have everyone sign paper work that we had been taught what to do in case of a fire. The only thing I saw on fires was the paper I was told to sign or else. It took a dr to step in between me and the head nurse. We or at least I was more than willing to confront someone that theaten to cut the tubes right there and then. Davita was well aware of my stand if it meant going home and dieing so be it. My new center a non profit also knows my stand. Gus I have lived a lot longer than I could have dream. So I have nothing to lose, if I’m push I will come home and I will go into crash mode and I will get everyone I know to record for youtube so the whole world can see how this country has gone from one of greatest to one that I really don’t want to be around that long to see where it going, it isn’t going to nice.
A youtube video sounds like a plan. Let the whole world know how you feel about your right of having dialysis alone at home. If your someone who was having dialysis at home then was kicked off the home the home dialysis program you should certainly make a youtube video concerning that.
Don’t mis read this I’m not mad, I just telling it lke I see it, I have no real hope for this country down the road. And it not due to people not working hard to make things better. But there are some in this country that would be happy to see it like pre war Germany in the 20’s and 30’s. Where we do away with the sick or those unable to care for themselves.
Bear with my spelling etc, it been a long day (5 am east maybe 9 pm)
thanks
Bob O’Brien
I know what you mean, but we have to come to a compromise with clinics that don’t allow solo dialysis at home. Some clinics solve this problem with remote monitoring. How can other clinics solve it? Should they all offer remote monitoring? Should they re-write the agreement papers we sign? For the most part looking at their legal policies might help in coming into a compromise that will allow solo dialysis at home.In Davita’s case, I think one must post a video on youtube and let the world know what happened, especially if your one of the people who were kicked off the home program.
When we first started Home Dialysis Central in 2004, our position was that anyone who had blood outside the body (i.e., doing HD) needed to have someone there.
It’s tricky for DaVita, I’m sure, because the FDA has not approved any machine for self home dialysis. But once a device is on the market, an MD can prescribe it for any purpose, and that’s how self home dialysis is done now. I wonder if a change of nephrologist might help Anna to stay at home?[/QUOTE]
It is my opinion though I am not an attorney that legally NxStage or Davita(any dialysis provider) do have the right to control our dialysis whether we like it or not; I would think they both could be sued if they knew we were dialysing alone and we died as a result of not having a helper available. I think the ramifications are large including approval by FDA to be in question.
I learned early on that I could do my dialysis alone without assistance; however I found it to be scary by not having someone in the home with me. I usually have someone available and on site. I most defiinitly would not do nocutrnal with out someone available. I respect my rights and the rights of NxStage and Davita to withhold my option to do Home Hemo with the NxStage.
I think I understand Anna and others with the same opinion. That is not for me and I think they should revisit this issue. Thank you Dori for what you do; I am enjoying the presentations. Keep up the good work.
Well, I would certainly never suggest that anyone who isn’t comfortable dialyzing at home be forced to do so, just that the option should be there for folks who feel they’d be safer at home alone getting optimal dialysis than in a center getting “adequate” treatment.
As far as lawsuits, we’re not aware of any related to home dialysis. But there have been MANY lawsuits related to in-center HD. So, if the lawyers are concerned, the clinics should send everyone home!
Oops, forgot to add: So glad you’re enjoying the Webinars! We’ve found a new vendor that has similar features but is much more stable and professional, and hope to debut that later this month.
[quote=cehill;16663]It is my opinion though I am not an attorney that legally NxStage or Davita(any dialysis provider) do have the right to control our dialysis whether we like it or not; I would think they both could be sued if they knew we were dialysing alone and we died as a result of not having a helper available. I think the ramifications are large including approval by FDA to be in question.
Exactly, if we get trained to do home dialysis we agree with our clinic and sign papers agreeing to the terms and conditions we abide to. Our clinics are taking the responsibility for patient’s outcome. However, if the clinic didn’t allow solo dialysis at home and you get caught breaking that agreement then who’s fault is it? Of course, the patient! Don’t you think most people don’t understand the state the body is in when on dialysis and have blood outside your body? This definately no walk in the park and wouldn’t compare solo home dialysis to someone living alone without esrd.
I learned early on that I could do my dialysis alone without assistance; however I found it to be scary by not having someone in the home with me. I usually have someone available and on site. I most defiinitly would not do nocutrnal with out someone available. I respect my rights and the rights of NxStage and Davita to withhold my option to do Home Hemo with the NxStage.
Yes, sure is possible and have to confess that I experimented this a few times to analyze my thoughts about this and concluded that its very very unsafe. Certainly wouldn’t cut corners or try to change the rules in order to take advantage of doing solo hemo dialysis at home. In the current state of technology no. Perhaps once nano hits into the market it may perhaps be acceptable. I can say I do solo, but there’s some people in the house. Now thats safer…
I think I understand Anna and others with the same opinion. That is not for me and I think they should revisit this issue. Thank you Dori for what you do; I am enjoying the presentations. Keep up the good work.
Charles
For those people who still believe in solo hemodialysis I think they still have that benefit by just going to clinics that offer it. There might not be many that do but am sure if research shows that solo home dialysis is as safe as with having a partner then I think more and more clinics would be willing to offer it. Just keep advocating for it and perhaps make some youtube videos proving that solo home dialysis is safe.
Gus, I’m pretty sure that the relative safety of dialyzing alone is always going to depend on who is doing it. The numbers are unlikely to ever get big enough to study. If you don’t feel comfortable doing it, don’t do it. But folks who DO feel comfortable–and don’t have partners–should have the option to talk with their care team about whether it might be appropriate for them.
Agree and think more patients would be candidates for solo txs if training was more comprehensive. I got jiffy lube training for home txs similar to the way education was so limited in clinics I have been in. Education is everything! Something I have discovered is, just because one is a neph or nurse does not guarantee that one is a good teacher. Clinics should have competent nurse trainers. Ever since I have been on dialysis, I have gone through the stress of my life, because I have had to constantly re-evaluate/re-learn dialysis info I was given by the “professionals” that was incomplete/.inaccurate. It is beyond me how so many ESRD professionals could be so poorly educated. I don’t know about other fields of medicine- maybe the same thing exists that I have experienced in dialysis. But it is very victimizing when dialysis professionals are so poorly educated - it holds patients back. Again, education is everything, and if education was what it should be, the disease, tx and capacity to do txs solo would not be so threatening- patients’ health would be so improved and it would be possible to return to normality in numerous ways.
If you haven’t already looked at the Core Curriculum for the Dialysis Technician, which you can get as a free pdf download from our Medical Education Institute website (http://www.meiresearch.org), you might want to go through it. This is the manual that is required in some states for patient care technician training, and it gives a lot of the WHY along with the WHAT and HOW.
If you haven’t already looked at the Core Curriculum for the Dialysis Technician, which you can get as a free pdf download from our Medical Education Institute website (http://www.meiresearch.org), you might want to go through it. This is the manual that is required in some states for patient care technician training, and it gives a lot of the WHY along with the WHAT and HOW.[/QUOTE]
Thanks, I do have it as I recently downloaded it. I had asked a dozen times in clinics I was in if they had a copy I could read, but no one ever provided it to me. I will be reading it when time permits. I did skim through it and noticed the part where it speaks about which direction to cannulate needles. As you know, from Prof. Agar’s recent web seminar, both should go up. I happened to notice where you cite the ven up art down method. So looks like that may of changed, but I look forward to reading this text to fill in my knowledge gaps. How many states use this text to train techs? All this time, I did not know that you wrote it. How did you go about writing it?
When it comes to machine training, feel the machine companies need to do a better job of facilitating training by providing better training materials and classes for clinic home trainers and patients.
When we did the last edition, we didn’t know about Dr. Agar’s thoughts on needle direction. Next time, we may update that. My understanding is that most facilities use the Core Curriculum for training (not sure how many states), but reading a book alone is never enough to get folks up to speed–having a preceptor who is patient-centered and knows his/her stuff is also crucial, and training is not necessarily given enough time…
As for writing it, we first put it together with a multidisciplinary committee of authors & reviewers in 1996, and there have been 2 major revisions since then, most recently a couple of years ago.
Interesting, I see. Well it would be nice if there were more experts working in dialysis. I’ve met a few and it is so obvious that their knowledge level far surpasses the average dialysis neph, nurse or tech. The majority of staff I’ve had probably never read the Core Curric. But alas it all comes back to the “E word” = enforcement. Clinics go into business with no thought of quality care.
I really have to disagree with you although you are correct there isn’t enough education. Those who do solo treatments are those who have gained the confidence to do it on their own. At first perhaps they took more chances, but as with anything else with practice comes more capability. And after a short time they can do their tx solo.
The question is whether people have a right to treat alone. If the clinic disapproves and is concerned about liability, the dialyzor can always sign a waiver to hold harmless. At a recent meeting with NxStage of the 8 patients present 6 do tx solo. That’s obviously not a large enough sample to come to any conclusion. But I think that more dialyzors are solo than you think.
I think we should do everything in our power to make some of these individuals lives than than pleasant. I do not see why she could not be given a monitoring system and a blood sensor. Individuals have the right to deny medical care with a signed piece of paper, why not in dialysis? This crappy attitude of “I know what is best for you” is for the birds. Guess what, you do not know what is best for me. In addition, I am more than happy to tell you about it. Quite honestly, this situation does not pass the smell test. Who died and left them in charge? If I did have self dialysis, I would never tell them, I am not that stupid. I know that we have people that have self-dialysis, I am not that dumb to believe that it does not happen. These people fail to realize that having a partner each and every day for hours on end, is very tough mentally on the partner or spouse. I would love to see these people walk in our shoes for a day, week, or a month, they would be singing a vastly different tune. This is an industry that is filled with, “Do as I say, not as I do” attitudes. I hope they enjoy their power, but, with the wearable artificial kidney running in human clinical trials, that power is soon going to be coming to an end.
I am following this thread with a lot of interest and concern.
I am a 32 year old person in India on nocturnal home hemo for the last 2 years. I have a tech that comes home every night, starts dialysis for me and sleeps in the same room and closes treatment in the morning and leaves. Same routine every night - 6 nights a week.
Over the months, I learned the starting procedure and am now able to start treatment on my own without ANY help. And so, I have been doing this before my tech arrives. He sometimes comes a few hours after I’ve started my treatment.
However, the important thing is the emergency facilities here are nowhere near those available in the US or Australia. There is no facility for someone at the clinics to monitor my treatment remotely. Should something happen, it could take about 20 minutes to half an hour before any professional help arrives.
I have my parents and brother at home most of the time but they have no clue of what to do in an emergency.
I love the independence self dialysis offers me but I am worried about the risks involved.
