Do Pts. really want HD?

Hi Folks
Something has been troubling me for a while now.

Do in center pts really want HD? At least here in US? Or are most (51%) very happy with three a weeks?

Do you think it a matter of just being told about the benefits of more is better? Or is all the work that one has to do to much, that stops pts?

What about fear? But if it is fear I did not think that fear was a real reason for Ins & medicare to pick up the bill? Is it cheaper for the payor, to have pts home, yes or no ?

Or is that dialysis companies and drs, like the the set up, just the way it is?

My reasons for this I will talk on later
bobeleanor

[quote=bobeleanor;14059]Hi Folks
Something has been troubling me for a while now.

Do in center pts really want HD? At least here in US? Or are most (51%) very happy with three a weeks?

On my own experience and observations on being in-center for many years non of us patients including myself never wanted hemodialysis, I mean who does? As for the the ammount of times per week most agree that 3x per week is enough, I did.

Do you think it a matter of just being told about the benefits of more is better? Or is all the work that one has to do to much, that stops pts?

Education and being informed is the key to convincing in-center patients that frequent dialysis is healthier.

What about fear? But if it is fear I did not think that fear was a real reason for Ins & medicare to pick up the bill? Is it cheaper for the payor, to have pts home, yes or no ?

Most patients I think do have fear of making the switch, I did. I knew that change is good so I was brave enough to do it. As for convenience of saving money by sending patients home, maybe…could be. Am not sure.

Or is that dialysis companies and drs, like the the set up, just the way it is?

Not all Doctors think the same. Does your Dr. care about you? If he did he’d rather have you have the best care possible.

My reasons for this I will talk on later
bobeleanor[/quote]

How many dialysis patients believe (erroneously) that 3x/week dialysis replaces kidney function…after all, dialysis is called "renal replacement therapy? In truth, good conventional (3x/week 3-4 hour dialysis) replaces 10-15% of kidney function…that’s it. If patients knew that and thought about it, I think they might be more interested in getting more dialysis, especially if they talked with people like those of you who post to these message boards.

Case in point…a patient I’ve known for several years who did in-center HD 3x/week did a presentation on hemodialysis with a patient who was doing nocturnal HHD. She hadn’t ever heard of NHHD and talked with the NHHD patient. She didn’t know that the corporation where she got her conventional dialysis had nocturnal in-center dialysis 3x/week…no one had even offered it to her (and she doesn’t have a partner, which her clinic requires). She talked with her clinic and is now doing nocturnal in-center dialysis and is feeling better than she has for years.

The way I look at it, the more of you that are out talking about your home dialysis experiences and how you feel with more frequent home dialysis, the more patients will learn about it and want to do it. In fact, I’m hearing about more and more clinics with waiting lists for home HD. Time will tell how many people choose to do it, whether those that do are patients who have been on PD or had a transplant and want the freedom that home dialysis can provide, or whether some new patients will choose to start treatment on home HD (we know patients start on PD). I can’t wait to find out whether the barriers that prevent patients from doing home dialysis (PD or HD) are more likely to be mistaken beliefs (prejudices) vs. reality. It’s truly amazing (and kind of frightening from a lack of education standpoint) what patients, families, primary MDs, nephrologists, and dialysis staff who have no experience with home dialysis believe and pass on as if it was gospel!

Hi Folks

So who do hold to account? The drs., nurses , social worker who have the needed info? Or the Pt consumer who need the drs., nurses , socal worker to give the needed info in the first place?

Bobeleanor

The ESRD Conditions for Coverage (CfC) or federal regulations require that facilities complete a long term program (LTP) with every patient that is individualized. The LTP indicates “the selection of a suitable treatment modality (i.e., dialysis or transplantation) and dialysis
setting (e.g., home, self-care) for each patient.” The CfC further requires that the program is developed by a professional team. The team includes the dialysis facility’s physician director, a qualified nurse, a qualified dietitian and a qualified social worker. The patient is part of the team and is supposed to participate in the development of the LTP. The patient’s preferences should be considered in development of the plan. The plan is supposed to be reviewed by the team, including the patient, each year. In addition, there is a patient care plan (PCP). PCPs are completed every 6 months for stable patients or every month if the patient is unstable.

Dialysis facilities are supposed to be surveyed by the state at least every 3 years. The state surveyor interviews patients about such things as what they know about different treatment options, whether they were involved in development of the LTP and the patient care plan. I hope that patients are responding to surveyors’ questions honestly. If a surveyor finds that patients haven’t been educated about treatment options and/or are not participating in developing the LTP and PCP, there are many places where the facility could be cited including the medical director, the team (LTP, PCP) and under patient rights.

It’s good for patients to ask questions, but many don’t even know the questions to ask so it’s hard to hold patients responsible.

Yup. I have the feeling we’ve had this conversation before, Bobeleanor, and I did search for it, but had to move on to something else. There isn’t any place in the system of care for kidney disease–or any other chronic disease–where patients learn what they need to know about their treatment options, questions to ask, and how to take care of theselves. The “education” most patients get is haphazard, in bits and pieces.

It’s hard to “blame” anyone for a system-wide failure that affects all of U.S. healthcare. About 40-50% of patients crash into dialysis without any prior warning. Even once patients are cared for in centers, no-one is getting paid to educate them, and each year they have to provide dialysis to more patients with fewer dollars using fewer staff.

All of this is why we created Kidney School (http://www.kidneyschool.org) and Home Dialysis Central.

HI Folks
Yup we have had this ,but this happens here .

Are you saying that the drs., nurses, social workers will only talk to pts consumer for a set amount of cash? Even if it means that talking to a Pts consumer would do better with more dialysis?

Sounds to me like no matter how much you pour into a system that is run that way, the folks running it will only want more down the road Which was my main question. Are the people who are in charge happy with the set up, only they want more money?

I also had brought up that an outside body (ISO) should come in and set nation wide rules and laws.

bobeleanor

[QUOTE=bobeleanor;14082]Are you saying that the drs., nurses, social workers will only talk to pts consumer for a set amount of cash? Even if it means that talking to a Pts consumer would do better with more dialysis?
[/QUOTE]
No, I am saying that when dietitians and social workers have as many as 175 to 200 patients each, and the Conditions for Coverage of dialysis centers only require one RN (and no doctor) to be present during treatments, most care is provided by unlicensed (in most states) techs–many of whom don’t get much education themselves.

The really sad thing is, many patients are afraid to go home because they believe they’re being cared for in the center by “professionals,” when most of those caring for them may be well-intentioned and dedicated, but are not technically professionals. I’d love to hear from techs, but my understanding is that most get about 6 weeks of on-the-job training–about as much as a home HD patient would get. Meanwhile everyone in the center is running around trying to provide dialysis treatments and no-one has time to do the kind of thorough, repeated education that every patient needs.

[quote=bobeleanor;14059]Hi Folks
Something has been troubling me for a while now.

Do in center pts really want HD? At least here in US? Or are most (51%) very happy with three a weeks?

Do you think it a matter of just being told about the benefits of more is better? Or is all the work that one has to do to much, that stops pts?

I believe you just can’t imagine the benefits until you are doing short term daily or daily nocturnal. I believe the majority of patients feel like they are patients and need to be treated by medical professionals. It is not until you get back some of the stamina, strength, libido that one can realize how wonderful daily hemodialysis can be.

The best thing for our brother’s and sisters who are in center is to go to them and talk to them about what we are doing now that we couldn’t do on in-center. Show them pictures, tell them stories, encourage them to break their three times a week shackles.

In-center dialysis due to its very nature promotes a feeling of loss of control. It promotes the least common denominator which is the sickest person. Laying next to sick people who are only given the option of watching television does not promote a feeling of being in control or in command of your life. Nor does watching a fellow patient die next to you. That is scary and sad and can’t help but make you feel like you may be next - regardless of how irrational the thought may be.

All too often I believe patients visualize dialysis as a life sentence to misery rather than a life actualizing opportunity to live to one’s fullest.

I believe dialysis patients have an open window on death and as such should feel an even greater obligation to live life.

This is based on my six years of experience with all types of dialysis.

Dialyze for the prize, baby! Dialyze for the prize!

Erich

I agree, Erich. They are context-bound: they only know their own experience and don’t realize how different it can be to get more treatment. And, they won’t trust staff, necessarily to tell them, but they WILL trust YOU.

Dori, you sure about that? Your statement I could say is false in a sense.

It was the staff, especially the social worker at Satellite Dialysis who introduced me to home dialysis. This was back in early 1980s…

I’ve advocated in-center patients on home dialysis and must say that not everyone has the same view about home dialysis. Some patients like the idea and some patients don’t, while others are too scared to make the switch…most common reason is because of the needles and/or blood. There are some very sensitive people out there.

I said they won’t necessarily trust staff–they may or may not.

The reason I bring this up is the fact that there seems to be a # of groups that make claim to be there for the pt. consumer. But in looking into what these groups have done , I seem to find empty space. Can you or anyone tell me "what have any of these groups done for pts. lately? "

It was no pt group that talked to me or dr, or nurse. If I did not look things up myself and find this board I might still be in center. The drs and nurses did everything they could to try and stop me.

Even the esrd 4 folks told me to look at the dialysis like a base ball game. Where the large centers are like the Yankees or Red Sox. Only the large centers own the ball, refs. the whole thing. Do you recall a post on the idea of making centers pay a fine, instead of just being written up?

So do I take on the fight like “Plugger” or since I now have what I want, find some other cause. The reason for this is " Will the fight make a diffence and will the pts who benfit from it make use of it. Or would the pts in center still be happy with in center.? I really think that most would still want in center due to the work thre home pt takes on. I’m home on the pure flow doing noctunal and it has not been easy. The first two months I was was at times ready to quit. Doing noctunal was not easy due to sleep issues. The pure flow has been great. Although I seeing things with poor service.

bobeleanor

[quote=bobeleanor;14105]The reason I bring this up is the fact that there seems to be a # of groups that make claim to be there for the pt. consumer. But in looking into what these groups have done , I seem to find empty space. Can you or anyone tell me "what have any of these groups done for pts. lately? "

There are probably many type of groups BUT am not sure which type of groups your refering to. In the case of this forum whom your participating your getting alot of useful information and perhaps educating yourself more. Even further, your getting the opportunity to chat with other home dialysis patients as yourself and if your not a home dialysis patient then am sure your researching about home dialysis. In simple terms dialysis patient groups can be useful in many ways. Many of these groups are advocates who work in union with the ESRD community to promote awareness and education. We encourage members to have voice and be in contact with our politicians to protect the quality of services we receive as dialysis patients.

It was no pt group that talked to me or dr, or nurse. If I did not look things up myself and find this board I might still be in center. The drs and nurses did everything they could to try and stop me.

So in your case you wanted to go home and do dialysis? Your clinic and Dr didn’t want you to? Did you need to leave the clinic to another clinic?

Even the esrd 4 folks told me to look at the dialysis like a base ball game. Where the large centers are like the Yankees or Red Sox. Only the large centers own the ball, refs. the whole thing. Do you recall a post on the idea of making centers pay a fine, instead of just being written up?

No I don’t, can you elaborate?

So do I take on the fight like “Plugger” or since I now have what I want, find some other cause. The reason for this is " Will the fight make a diffence and will the pts who benfit from it make use of it. Or would the pts in center still be happy with in center.?

It varies eeally, we can’t force in-center partients to go home. Its their choice of preference. We advocate in the goodness of what home dialysis can do but the final decision is up to the patient whether he/she will want to. I know there are many many patients but there’s only a handful whom we can speak to. Now and then we may confront patients and once you do its your chance to have dialoque…if your trying to fight your way to go home do you think you have gone to the end of the road with your fight to go home?

I really think that most would still want in center due to the work thre home pt takes on. I’m home on the pure flow doing noctunal and it has not been easy. The first two months I was was at times ready to quit. Doing noctunal was not easy due to sleep issues. The pure flow has been great. Although I seeing things with poor service.

Weren’t you doing Short-Daily? I’ve heard that it takes time to adjust to Nocturnal and that some people do go back to Short-Daily. Would you go back to Short-Daily? Been doing Short-Daily a long time now and it really like it…

bobeleanor[/quote]

when I started dialysis I knew my treatment options, but only took advantage of home hemo (after 5 years of in-center) because I wanted to go to nursing school, and doing home hemo was the only way I would be able too because the last tx started at 4:45 pm(school did’nt let out til 4:30) So the only benefit I got was dialyzing on Sundays and later tx time. Now 10 years later, I’m fed up with waiting on the water guy to bring my tanks, waiting on deliverys, and pm on my machine. I work at night so this interferes with my sleep schedule, exercise schedule(I’m training for a marathon), and to boot, my dialysis center is “out-of network” so according to them, when my insurance changes, i have to make the changes too. Anyways, I would rather dialyze in-center and not have to worry about the later. When I go on vacation, I get alot of rest. Just my POV as to why some people might not go to HHD.-TS

Hello there,
are you in the U.S.? I assume you were using an in-center dialysis machine, like a Fresenius or Gambro? That requires an R.O. and other items?

Thanks for posting…

Dear Annonymous:

Home hemo dialysis isn’t for everyone. I know a few folks who switched back to in-center. They just didn’t like the self cannulation. That doesn’t seem to be an issue for you.

When I go on vaction I take my unit with me and dialyze watching movies with my family. To me that is very relaxing. If you are set on returning to in-center good luck to you.

I wonder how three times a week will impact your marathon training. For me I have had a tremendous amount of energy on short term daily much more than I ever had on thrice incenter. Of course not enough for a marathon - I envy you for that. Also my EPO amount hovers at 5,000 three times a week which is a pittance of what I received in-center.

Let us know if you retain your energy levels going back to in-center.

I tell anyone who listens that at home will always take much more time than in-center. It is how you feel that should be the judge of whether it is worthwhile. I spend a ton more time with dialysis - ordering, receiving shipments, setting up, breakingdown, discussing it on forums, problem solving, recycling boxes. But I feel the best that I ever have without kidneys.

The value of the freedom that I now have to spend my time as I see fit is incalculable.

In addition to considering returning to in-center you may want to consider a different at home hemo therapy such as NxStage.

Good luck to you annonymous.

Erich

Hi Folks
So Unregistered wants to go back in center, without thought on cost to insuance or medicare which ever they have. ( It is my understanding it cheaping for Ins. and medcare for pt to go home) I see this as why people don’t go home. They don’t see the cost to everyone in the long way. I see this being a reason along with the work that home pt must do, it is not easy. as for waiting for shipments. I don’t have to be here for drop off.

Gus the groups I talk about you have a big sign on your post about one the groups. What has DPC done for pts lately?

bobeleanor