I was talking to my state rep and he was wondering what might help people get on home dialysis. What kind of things are stopping people from this treatment besides health? The first thing I thought might be helpful is more education - maybe a roadshow with doctors and nurses?
without a doubt education is the KEY…far “too many” dialysis patients are not made aware of all choices… it’s a one size fits all mentality… Mel’s article ( next posting) sums it up
I agree also more Education but not only for the patients but for the doctors and the centers.
There are a lot of centers all over the county as well as doctors that are still in the dark ages.
With the way the dialysis community is growing in a few years there won’t be enough seats in center for people to dialyse. We need to move to more home programs.
I know our center is always talking to the patients to see if they would be interested in doing home dialysis.
One thing we also remember doing dialysis at home is not for everyone. However the more we can get into home programs it will free up the chairs for those who can not do home dialysis.
We need to educate the doctors first and at the same time the centers!!!
It is amazing when I talk to many doctors they are blown away that what we do at home is available.
I did a lot of educating while Ralph was in the hospital.
I also talk to the nursing classes at the college I work at so that when the nurses graduate they know what is available to the ESRD community. Knowledge is POWER.
Pat
Pat…your so right…hit the nail right on the head…I agree totaly
Richard C/O Jessie
Thank you all for your replies! I guess I was thinking more of patient education at first, but I’m seeing now it could involve the staff and doctors to boot. My friends and I helped get a bill through the Colorado State legislature for certification for techs and I guess I’m on fishing expedition to see if something could be done in this area.
Regards,
Chris Schwab
Hi all;
When you say EDUCATE… EDUCATE… EDUCATE…It needs to happen before the patient requires the first trip into a dialysis center… So it would have to start at the Neph’s office. They need to be informed of the many choices that is available to their patients… How do you get a Neph to invest into spending time to educate themselves on the different modilaties??? is the million dollar question. Their patient load, in office and hospital and clinics and family takes up most of the 24 hours in a day. They need help getting the word out that there are choices… We need to produce a video (DVD) with the different modality and a network of patients that will talk/explain to future dialysis patient and their families of how it effects all their lives. this way the patient’s family can view the DVD and decide what would be the best choice for them. National Kidney Foundation holds symposiums that they invite Dr’s and nurses but they are usually attended by medical personel that is already in the dialysis.
Probably NKF needs to produce this DVD with the $$$'s from the machine manufactures and make it an function of their sales force to get the Nephs and staff to watch the DVD in their office over LUNCH…Ever see a Neph and staff turn down a FREE lunch… heh heh heh like the drug companies dropping off free samples… Free DVD’s can be the insentives that the DR’s need to get their patients EDUCATED.
HemoHelper
Hemohelper, we just DID a brand new DVD on home options this past year–you can view a segment of it from the home page (http://www.homedialysis.org) right this minute. It includes PD, daily home HD, and nocturnal home HD, with 6 patients and interviews with 3 nephrologists (one for each treatment type).
As much as we’d love to make it available for free, we couldn’t because we need to be able to reprint it when we run out. However, we did make an arrangement with the ESRD Networks–we did a reprint of 6,000 copies of it and they sent it out to every dialysis center in the U.S.
How to get something like this into the hands of MDs is a different question. Unfortunately, dialysis is the “orphan stepchild” of nephrology. It’s really looked down upon compared to research, transplant medicine, acid base balance, physiology, etc. So, only a tiny minority of nephrologists learns about dialysis at all during their fellowship training. The vast majority don’t even really have a good grasp of in-center treatment. Since they are uncomfortable and intimidated and the nurses do most of the real “prescribing,” they figure if they can’t understand it (and they’re doctors), how could patients ever get it?
The only real way to fix this, IMHO, is to get dialysis required in the nephrology board exam. We haven’t yet looked into how that works, but it’s going to take a while. Short of that, we need dialysis training programs for the nephrologists who are already out there. A DVD isn’t going to be enough on its own, but it’s a start.
[QUOTE=Dori Schatell;15619]Hemohelper, we just DID a brand new DVD on home options this past year–you can view a segment of it from the home page (http://www.homedialysis.org) right this minute. It includes PD, daily home HD, and nocturnal home HD, with 6 patients and interviews with 3 nephrologists (one for each treatment type).
As much as we’d love to make it available for free, we couldn’t because we need to be able to reprint it when we run out. However, we did make an arrangement with the ESRD Networks–we did a reprint of 6,000 copies of it and they sent it out to every dialysis center in the U.S.
How to get something like this into the hands of MDs is a different question. Unfortunately, dialysis is the “orphan stepchild” of nephrology. It’s really looked down upon compared to research, transplant medicine, acid base balance, physiology, etc. So, only a tiny minority of nephrologists learns about dialysis at all during their fellowship training. The vast majority don’t even really have a good grasp of in-center treatment. Since they are uncomfortable and intimidated and the nurses do most of the real “prescribing,” they figure if they can’t understand it (and they’re doctors), how could patients ever get it?
The only real way to fix this, IMHO, is to get dialysis required in the nephrology board exam. We haven’t yet looked into how that works, but it’s going to take a while. Short of that, we need dialysis training programs for the nephrologists who are already out there. A DVD isn’t going to be enough on its own, but it’s a start.[/QUOTE]
WOW! I’ve never heard this explained as clearly as you have here. When ppl say, “did you ask your nephrologist?” I always cringe, because I HAVE asked my nephrologists, all 7 of them I’ve had so far, and you should hear most of the answers I got. I knew I wasn’t imagining that they were not giving me complete, or correct answers, when it came to the many dialysis questions I have put to them. Never mind them understanding anything about the operation of the machine that is hurting me, because the prescription doesn’t work for me or because it is out of calibration!! And I couldn’t understand how they could be “the doctor” and not care how they looked in my eyes as the lowly patient- maybe that’s why they always ran off so fast and treated patients like we were incapable of learning lol! I’m laughing, but it isn’t funny at all.
Why in the world would CMS allow this scenario? Maybe they had no choice in the beginning of the ESRD program, but they’ve had a very long time to rectify this situation with an education initiative as you propose ( what has it been- 30-40 years?). If dialysis is the “orphan stepchild” of nephrology, then I’ve had 7 step-dads that owe it to their patients to get educated and stop faking it!!! If it wasn’t for progressive, out-of-the-box thinking pro-active advocates, this scenario would never change.
I believe the original intent was that all patients would be informed of all modalities. However, the way the Conditions for Coverage (ESRD regulation) was written allowed dialysis facilities to educate their patients on the treatment options that the facility offered and not tell patients about treatments that the facility didn’t offer. The result was that in-center HD programs grew exponentially and the number of patients doing home dialysis shrank. The proposed Conditions for Coverage (draft language) requires facilities to document that they’ve educated patients about all treatment options, including all home therapies and transplant. Assuming this language remains in the final published regulation, State survey agency personnel will need to review policies and procedures for how clinic staff educate patients about modalities, review patient records for what is documented there about the education that was provided, and interview staff about what they tell patients and patients about what they’ve been told. Hopefully this will at least increase the number of patients that have heard about other treatment options besides in-center HD.
This regulation puts the requirement on the dialysis facility after the patient has started dialysis since the Conditions for Coverage do not govern what happens prior to ESRD. Therefore since patients make choices about treatment options that they may be reluctant to change once they’ve already started dialysis and become used to having someone else do their treatment for them, it is urgent that doctors learn more to prove or disprove their biases about different modalities and getting into the nephrology curriculum would be a good way to do that.
The other thing that would help would be improved reimbursement for training which is sadly underreimbursed related to cost of providing training one-on-one. This could be accomplished by training a small group of patients at one time. However, it would be flying in the face of traditional one-on-one training. Some clinics are now doing group training and I suspect it helps reduce their per patient training costs.
BTW, if you haven’t seen the MATCH-D tool to help clinics assess patients for home dialysis, check out the following link. Be sure to look at the Home Dialysis Central homepage from time to time as we’re always adding new things.
http://www.homedialysis.org/files/pdf/pros/MatchD2007.pdf
Wow! Thanks for all the help! I’ll try to go through it all thoroughly. Right now this in the exploratory phase, but a small group of us did get that Colorado tech bill through.
It’s certainly possible that CMS doesn’t know about nephrology training–I had to be told about this several times before it really sunk in and the implications became clear. Also, CMS doesn’t have any control over what’s on the nephrology board exams (I’m not sure who does, actually; that’s something we’ll need to find out). Short of requiring some sort of dialysis certification–and who would be qualified to offer that?–CMS pretty much has to go with board certification, even though, in this case, that can be pretty meaningless…
The more nephrologists know that folks are on to them about their LACK of knowledge about dialysis, the more possible it should be to encourage them to remedy that lack and get some training so they understand the therapy many of them prescribe every day.
Something I didn’t realize until recently, the current ESRD regulations require that the medical director of a dialysis facility be a nephrologist, but the patient’s individual doctor is not required to be a nephrologist.
I believe most patients are followed by a nephrologist though so getting more education on dialysis in nephrology training programs and in nephrology boards would definitely be a step in the right direction to being sure that when patients ask questions, the doctors are comfortable answering them.
Hi Folks
Lets try and keep this going.,. Right now I’m getting to head out for next couple of days I hope I can find more time to gather my brain cells. This is great folks
Bob OBrien
Reading through this thread some are giving excuses for CMS, nephrologists etc. Not that anyone means to give excuses, but I’m sure it’s difficult to admit that CMS and all the many nephrologists may not be the most honest ppl in the world. Because they are either dishonest or they are pretty stupid. So which is it?
I mean come on, do you really believe that CMS doesn’t know what’s going on? I’ve had talks with some of them and they’ve told me they know exactly what goes on because they get ample complaints ( for goodness sakes, wasn’t there a Senate Hearing on the Dialysis Industry back in 2000’ that more than fully exposed what goes on?), but their hands are tied to do anything about it. Actually, they say, the authority has been given to the patients to enforce the ESRD regulations by forming state advocacy groups that keep the state regulators honest, as if patients who are ill from poor txs and clinging to life are going to establish advocacy groups in each state?! And I’ve been told by representiatives of top govt. agencies that it is well known that among nephrologists, there are those who give nephrology a bad name as they provide lousy care and are regulation-breakers.
Surely, those who work at CMS are no dummies and nephrologists who are so highly educated are fully aware of the fact that they are cheating patients out of true care by not being adequately educated in dialysis and hiding from patients the fact that superior txs exist. I don’t care how busy they are- it’s their solemn responsibility and oath to do no harm. Instead of providing these poor nephrologists with videos to help them so they can them tell patients the truth that in-center dialysis is the least effective tx, maybe we should get professional documentaries made to air on national tv so the American public can see how nephrologists actually operate and what really goes on in dialysis clinics of this country!
Personally, I’m tired of the excuses. I couldn’t live with my conscience if I cheated patients the way nephrologists, and clinics, including everyone from the administator on down do knowing they are hiding the truth about patients’ care in many, many ways. In every clinic I have been in, the one or two honest staff in a clinic have always let me know the truth about what goes on. I’m a firm believer that the truth comes out. And the truth is, this industry needs a complete overhaul as it is riddled with dishonest practices that have become acceptable across the board.
Hi Folks
Hi Beth
Can you clear this up for me? I had asked if I could have my Dr follow me and you reply with below
Quote Beth Witten from post "What Drs.?posted 2/06/08
Here’s a Wikipedia article that describes a nephrologist’s training and areas of expertise. This article also mentions urologists as being surgeons:
The current ESRD regulation that governs dialysis facilities has these qualifications for the physician director of the dialysis clinic. It doesn’t have requirements for other doctors. The Secretary referred to in this section is the Secretary of the Department of Health & Human Services.
(e) Physician-director. A physician who:
(1) Is board eligible or board certified in internal medicine or pediatrics by a professional board, and has had at least 12 months of experience or training in the care of patients at ESRD facilities;
or
(2) During the 5-year period prior to September 1, 1976, served for at least 12 months as director of a dialysis or transplantation program;
(3) In those areas where a physician who meets the definition in paragraph (1) or (2) of this definition is not available to direct a participating dialysis facility, another physician may direct the facility, subject to the approval of the Secretary.
Even though this doesn’t require that all physicians treating patients with ESRD be nephrologists, in the nearly 30 years I’ve been working in ESRD, I’ve never heard of someone on dialysis being followed by anyone other than a nephrologist (some are DOs, most are MDs). I suspect this is because the medical director is ultimately responsible for the care provided by all doctors who see that clinic’s dialysis patients. Therefore it would be important to find out from your nephrologist if he/she would feel comfortable assuming that responsibility for your urologist’s care considering that he has probably not had the specialized training that a nephrologist receives.
Beth Witten MSW ACSW LSCSW
Medical Education Institute, Inc.
Reply With Quote
But now you have posted below which one do we follow?
[QUOTE=Beth Witten MSW ACSW;15626]Something I didn’t realize until recently, the current ESRD regulations require that the medical director of a dialysis facility be a nephrologist, but the patient’s individual doctor is not required to be a nephrologist.
I believe most patients are followed by a nephrologist though so getting more education on dialysis in nephrology training programs and in nephrology boards would definitely be a step in the right direction to being sure that when patients ask questions, the doctors are comfortable answering them.[/QUOTE]
bob obrien
I think I have enough to make suggestions to my state rep about what could be done to help overcome the things that are preventing people from choosing home dialysis.
*Require DVDs on home dialysis be given to patients starting dialysis – I recall being given a packet of information when my daughter started dialysis, would have been nice to see more on home dialysis. (I will be taking a look at the DVD from Home Dialysis Central - thanks Dori)
*Lunches and conferences for nephrologists where the idea of home dialysis could be presented
*Road shows with doctors and nurses presenting the idea of home dialysis to patients and staff – maybe even finding a consultant like Dr. Christopher Blagg from Northwest Kidney Centers to help put something together
*Tradeshows with the different manufacturers of home dialysis equipment in areas that have been identified as having a strong demand for home dialysis
*State inspections would include making sure patients have been informed of the different modalities of dialysis
*The state board of health could look into including home dialysis in the nephrologists’ training and exams
*State might consider helping out with the training expenses for home dialysis
Comments are welcome.
[QUOTE=plugger_;15661]I think I have enough to make suggestions to my state rep about what could be done to help overcome the things that are preventing people from choosing home dialysis.
*Require DVDs on home dialysis be given to patients starting dialysis – I recall being given a packet of information when my daughter started dialysis, would have been nice to see more on home dialysis. (I will be taking a look at the DVD from Home Dialysis Central - thanks Dori)
*Lunches and conferences for nephrologists where the idea of home dialysis could be presented
*Road shows with doctors and nurses presenting the idea of home dialysis to patients and staff – maybe even finding a consultant like Dr. Christopher Blagg from Northwest Kidney Centers to help put something together
*Tradeshows with the different manufacturers of home dialysis equipment in areas that have been identified as having a strong demand for home dialysis
*State inspections would include making sure patients have been informed of the different modalities of dialysis
*The state board of health could look into including home dialysis in the nephrologists’ training and exams
*State might consider helping out with the training expenses for home dialysis
Comments are welcome.[/QUOTE]
I would add to this list, require that clinics establish home programs. The main reason clinics withhold info. on home txs is because they don’t want to be bothered establishing home programs and don’t want patients to know that there are better txs available. If they told patients the truth, that they were only getting the bare minimum amount of dialysis that will lead to all kinds of physical problems and hasten mortality, they would be treated as suspect and would get all kinds of backlash from patients. So, they have to pull the wool over patients’ eyes to keep the natives from becoming restless. It doesn’t do any good to tell patients about home txs if there is not an existing program to offer them. And clinics certainly don’t want to lose patients to their competitors. Clinics should be made to broaden their offerings, including in-center SDD and SND. The cats out of the bag and the day of barely adequate dialysis must cease. Time for true dialysis education for nephrologists and every member of the team.
I agree that clinics not telling folks about home options is a problem, but requiring every center to offer all options is liable to cause resentment, mediocrity, and potentially bad outcomes.
At the Annual Dialysis Conference I just attended last week in Orlando, someone presented data about mortality at smaller vs. larger PD programs–and there was about a 30% difference (larger programs were much better).
Home dialysis programs that only have a couple of patients can suffer from not enough staff knowledge and burnout from not having someone else to take call, if there is only enough money to support one home training nurse.
I would say that we have to enforce a requirement that clinics tell folks about all of the options–and where they can get them. But regional training centers for home therapies may be more efficient and safer.
As long as we’re telling folks about all of the options, though, let’s not pretend they’re all equivalent and be “neutral.” Some treatments offer decidedly better quality of life and even survival than others. We are long past the days of just in-center HD and PD (which are more or less equivalent in terms of outcomes; PD has a survival advantage for the first year or two for non-diabetics and numerous lifestyle advantages). Daily and nocturnal home HD are better therapies. We owe it to folks to tell them the truth about which treatments will help them to feel better and live longer.
D- I agree that clinics not telling folks about home options is a problem, but requiring every center to offer all options is liable to cause resentment, mediocrity, and potentially bad outcomes.
J- I would say that not telling folks about home options is more than a problem- it’s a crime! It would not be necessary for every clinic to offer all the options, but a clinic in every city could be designated for this purpose. If the other clinics want to remain in the dark ages, let that be their choice. Such clinics already are apathethic, mediocre and have bad outcomes- that’s nothing new. Let them remain like that if they choose, but it should be mandatory for them to inform patients where they can get a superior tx if they don’t want to offer optimal therapies.
D- At the Annual Dialysis Conference I just attended last week in Orlando, someone presented data about mortality at smaller vs. larger PD programs–and there was about a 30% difference (larger programs were much better).
J - Why is that?
D- Home dialysis programs that only have a couple of patients can suffer from not enough staff knowledge and burnout from not having someone else to take call, if there is only enough money to support one home training nurse.
J- Certainly the bigger the program the better, but I think even one nurse competently educated on home therapies can get the job done. And should the patient base grow, well then hire another nurse. Either a nurse knows her stuff or she doesn’t. The average nurse in dialysis is undereducated. They wing it each day instead of having full confidence in what they’re doing. Let’s educate them adequately and then get them doing what they are designed to do- provide excellent nursing. A good nurse can do dialysis with her eyes closed. Let’s give them the skills to extend their knowledge into the home realm. The problem is, clinics take their nurses and run them ragged. Any nurse whose worth her salt and wants the best care for dialysis patients would jump at the chance to run a home hemo program. And patients that are trained well will have no reason to call their nurse after hrs 99% of the time.
D- I would say that we have to enforce a requirement that clinics tell folks about all of the options–and where they can get them. But regional training centers for home therapies may be more efficient and safer.
J- What do you mean by regional training centers? An important thing to remember is the average dialysis patient is not made of $$$ and has limited energy to travel for training. Training centers should be within close range.
D- As long as we’re telling folks about all of the options, though, let’s not pretend they’re all equivalent and be “neutral.” Some treatments offer decidedly better quality of life and even survival than others. We are long past the days of just in-center HD and PD (which are more or less equivalent in terms of outcomes; PD has a survival advantage for the first year or two for non-diabetics and numerous lifestyle advantages). Daily and nocturnal home HD are better therapies. We owe it to folks to tell them the truth about which treatments will help them to feel better and live longer.
J- Yes medical ppl- “the truth” would be nice.
Hi Folks
Can someone who knows answer this question. If a person gets into a home dialysis program. Is the company that provides supplies and who sees a person once a month to go over labs, etc still gets payed for tx’s?
bob OBrien