Here is a recent interview with the Aksys CEO
Mel
Very interesting read there…I see that one of the very talked goals in there is helping government and consumer save time and money. With today’s clinics getting overcrowded and medicare on the brisk of being overhauled there’s a good reason why other alternatives should be brought up as soon as possible. The question is will it work? I think it will but will require some tweakig here and there along the way. Something that will not happen overnite but through good practice over time.
Probably the hardest part is how to iron out all the myths and problems associated to why patients don’t want to select self-care. There must be over dozens of reasons why most patients don’t select self-care.
Staff have all kinds of excuses for why patients can’t do self-care – they’re too old (meaning we assume they’re not technical enough), too sick, to uneducated (not knocking anyone on this board, but do you really have to be a rocket scientist to do it), but research a few years ago found that 75% of patients did not hear (or remember hearing) about any type of home dialysis before they started in-center HD. If patients don’t hear enough about home dialysis to remember hearing anything, it’s not surprising that so few people choose home dialysis.
Dori and I wrote an article on home dialysis for the latest issue of NKF’s newsletter Family Focus (www.kidney.org/patients/pdf/ff_sp05.pdf). It’s amazing how many barriers to home dialysis staff see, but they see so few barriers to in-center dialysis. Because they believe home dialysis – and especially home hemo – is such a burden on the partner, they paint a negative picture. Patients and potential partners believe them and to spare their loved one, patients choose to do dialysis in a clinic where staff “take care” of them, viewed as somehow safer and preferable by staff,
patients, and sometimes even doctors.
Patients on this board are the evangelists who can move this effort along by sharing your messages with us and your stories with folks in your area who are deciding what treatment to do or have started treatment and might consider taking on more responsibility. Please, please, please share with your staff how important it is to have patients (and even new and existing staff) talk with patients to dispel myths and misunderstandings about what it takes to do home hemodialysis safely.
True, true indeed…I remember before leaving my former dialysis clinic how some of the people there including some patients didn’t like the idea or thought I was crazy…am not saying they apposed it but they didn’t look to happy about my decision and trying to convince other patients there was even worse… Well, you know what? After 2 weeks of training I went back there to visit them and am amazed how some of the techs faces looked when they saw me there standing. :roll:
So in most cases seems that patients who try to advocate homedialysis in for profit making clinics will get the boot… :oops:
So trying to evangelize is risky business unless there’s laws that require all clinics to offer this information…
However, I’ve had the opportunity to share my experiences elsewhere and to all my relatives, families and friends and they say wow! 8)
When I first started talking about making the switch to daily home hemo, I got nothing but encouragement from the staff at the dialysis centre, including nurses, dieticians, nephrologists and social workers.
The people I didn’t get encouragement from were other patients. Most dialysis patients I talk to, and I talk to a great many, simply do not want to do this themselves at home, and if I press the issue, they don’t even want to hear about it. I also didn’t get much encouragement from relatives either. They all taught it was unthinkably dangerous to do this at home, not to mention a lot of trouble. Other patients think they are doing Ok on in-centre hemo, but they don’t realize that they are really only doing adequately. It’s just keeping them alive, not improving their quality of life.
Because of that, I don’t see the professionals as being a barrier, but more patients and families themselves.
Pierre
When ever I talk to anyone I use an analogy.
We we were deciding to do nocturnal at home I just looked at it as–
when you are first married and have no children- you don’t know what you are getting into (18+) years but that doesn’t stop you from having children. So to me it was the same thing. You accept that child no matter what and everything that goes with raising a child. So we accepted the noctlurnal dialysis no matter what (but knew it would be a better qualitiy of life for my husband) for however long GOD will allow me to keep him.
Hopefully “20 more years-when he will be 90”
Pat
Good analogy, Pat.
To add to my previous post, I even find a bit of hostility among other hemodialysis patients when I sing the praises of home hemodialysis, let alone daily home hemodialysis.
Pierre
There are always going to be people that you could never convince that home dialysis is at least as safe as in-center dialysis. They wouldn’t want to take the responsibility for it. [Love the child-rearing analogy.] However, there are others that just don’t have a clue about it and seeing someone who is doing home dialysis and looks like they’re living a full life may make them consider it.
In addition to working with Medical Education Institute, I coordinate education classes sponsored by the Missouri Kidney Program very two months in the Kansas City area. These classes were designed to help people that have CKD (or are new on dialysis) and want to know what their lives will be like to learn enough to make the best decision for them and to feel more hopeful and in control.
Classes are held on two weekend afternoons and consist of 3 classes on Saturday (Intro to Kidney Disease, Diet & Kidney Disease, Financing and Coping with Kidney Disease) and 3 classes on Sunday (Hemodialysis, Peritoneal Dialysis, and Transplant). We always have a patient on home hemo as well as an in-center patient and a home training nurse for the hemodialysis class.
Unfortunately, we don’t get as many referrals from doctors as we’d like – maybe 10% of the patients that actually have kidney failure – and only about 10% of those referred actually come to the classes. I’ve heard from those attending our classes how valuable they feel it is to be able to hear from patients that are doing the different treatment options. On our evaluation, they rate our classes very high and their knowledge and coping scores improve significantly from the pre-test to the post-test.
I can’t imagine that any of your clinics that are training patients to do home hemo wouldn’t welcome patients like any of you to mentor new patients. If you have an opportunity to talk one-on-one or in a CKD class with new patients or people whose kidneys have not yet failed, please consider doing it. Our patient speakers say they really enjoy it and the patients and families who attend our classes always express their tremendous appreciation for their sharing their experiences. What you say may not seem to make much of a difference now, but you never know when something you said may convince someone to take a chance on home dialysis.
You all speak of centers not supportive of home hemo, very few supportive because of age, etc. Believe it or not, when I approached my unit here (Southeast Missouri) they were not aware of the system I asked about. I have been interested in home hemo as opposed to PD because it would fit my lifestyle much better. I now do in center hemo for only l 3/4 hours 2 times weekly. Labs look but I know doing 6 daily treatments would be much more effective treatment. With any luck, I will be the first in our area to try it. Our unit is looking at the option now and if they ok it it will be due to the info I have received here. Many thanks!
LindaE
In my opinion I think there should be a law that requires all dialysis clinics regardless whether they do not support home dialysis to provide that information that tells patients those options exist and if the patient chooses home dialysis by law they would need to refer that patient to a clinic that supports home dialysis…it’s the only way I think would make the playing field even.
If you kinda have an idea why Microsoft anti-trust laws exist you’d know why I think a dialysis law in that manner would be good. Latest example might be the recent news on Intel whom govrernment authorities invaded their offices on charges of anti-trust policies…
Though you say they didn’t know anything about it and if they do support you on the mission then your on the right track…and luck on the process…hope all goes well for you.
Dialysis clinics are governed by Medicare regulation. Although the current Medicare regulation only requires dialysis clinics to tell patients about the services they offer, Medical Education Institute provided a very lengthy comment to CMS when draft regulations were published. MEI recommended that patients have the right to know about all treatment options for kidney failure, including all types of home dialysis and they should be told where clinics within 120 miles that offer any treatments not offered by the patient’s dialysis clinic. CMS is reviewing all comments received and must publish final regulations within 3 years. If that sounds like a long time, the regulation was very lengthy and CMS could have received many, many comments. when the regulation is finalized, we’ll post it on Home Dialysis Central (probably in the professional resources) and I’m sure it will be one of the news items highlighted on the home page.
Oh wow, this is really great. I hope they consider it, I really do. Something like this will open the doors even wider… 