Two Sides of the Coin? Non-Compliant Patients & Political Action Committee

[Black]

The following two threads from another board appear to me to be addressing both sides of home dialysis.  This site has far fewer posts and probably far fewer members.  But IMO, the posters here seem to post more often, seem to be more willing to be blunt and outspoken, and we may have more members here willing to get involved and actually take on these issues which need to be addressed.

www.homedialysis.org/boards/viewtopic.php?t=402

www.homedialysis.org/boards/viewtopic.php?t=2051

I can't contribute $$$ but I will be willing to e-mail, snail mail, telephone any time it is required to further the "cause" of drastically increasing the quality and number of home hemodialysis programs and the quality of care the HHD patients receive.

What do you think?  Can we help Bob with this?

[kitkatz]

      First let me say, I am not a home dialysis patient yet... but I do have some ideas for you.  I have been on dialysis for almosr eight years now, so some old hand experience might be handy.

     When you are in contact with your patients who are not compliant you need to come in as non-adversarial to them.  I know if you told me three strikes and you are out, I would probably say screw you.  Besides I think it is not wise to tell a dialysis patient you are going to cut off their treatment over paperwork not filled out is not a wise thing to do. Your mortality rate will go up.  I would be sure to set up an easy to use run or flow sheet.  Some people hate paperwork and just will not do it.  Maybe a phone or fax system where they phone in the information to a message machine and someone fills out the paper work for you.  Remember although it is your job to make sure they have adequate dialysis and training, it is the patients life you are asking them to make changes to.  Many people resent being on dialysis in the first place., and just becasue they are home dialysis patients who do it themselves, it does not mean they like it or do not resent its intrusion into their lives.

I would be very patient.
Be non adversarial in your talks with the noncompliant paper pushers.
Set and easy communication system whether by phone of fax.
Make your self and any people the patient deals with easy to contact.  I hate getting the message on the phone at our center.  Just put me through to who I want to speak to immediately.
Return patient calls quickly and effectively.
Make it easy for the patient to be compliant.

     

[BigSky]

Actually I agree with the approach somewhat.

In  a HHD program there is no reason for a patient not to be complaint. (there can be the occasional screwup and that is understandable, however the consistent non compliance is not) That is part of their responsability for being a HHD patient, keep up with all paperwork etc.   For a patient to refuse to be complaint then by all means ship them out to another unit or better yet revoke their HHD status and let medicare know the patient is not able or capable to handle HHD services and must dialyze incenter.

People can piss and moan about excuses all they want about not filling out the paperwork, however they are just that excuses. 

It boils down to one thing.  RESPONSABILITY!  If one cannot be responsable and do the required paperwork then they have shown they are not responsable enough to do HHD.

If one consistently refuses or does not try to be complaint and thus has been proven irresponsible then by all means they lose the right to complain when the door hits them in the ass over it!
 

[Black]

I find it interesting that you assumed the allegations of "non-compliance" were accurate and that the home patients were indeed just deliberately refusing to do as asked.  But, I had assumed the reverse was true.    It's proably a little of both.

Maybe the patients are expected to fax the reports and someone at the clinic is forgetting to switch the phone line to fax before they leave for the day.  Maybe the patients are completing the reports and someone on staff is misfiling them and some where there is a file with most of the missing reports.  Maybe the person previously in her job did not emphasize that the paperwork is important.  Maybe the older patients are having difficulty doing the reports on-line, or have trouble switching their phone line to a fax line, or just forgetting to take them and turn them in.

Regardless, when there is a gap between expectations and reality there needs to be open communication and a willingness on both sides to help each other work toward a resolution.  IMO, the "my way or the highway" attitude when it comes to something as important as home dialysis is childish and a losing situation all the way around.  The center will lose money (in clinic patients are much more expensive to the provider than the home patients).  The center will get a bad reputation and patients will attempt to avoid that center.  The patients will lose quality of life and possibly far, far more.

Medicare $$ are limited and some clinics are already so crowded they're going to 24-7 operation.  Building new (or expanding old) centers is not cost efficient when home dialysis will solve the problem.  The goal of merely keeping patients alive is short sighted, expensive, and heartless, when compared to what patients could be when the goal is optimum health.  Most patients, especially those under 60, can remain at or return to work if the goal is optimum health and home dialysis.  That alone would save billions over a decade.  Changing Medicare to accomplish that will take an act of Congress and we all know how hard that is to get.

Individuals, some on the business side and some patients, have been pushing for many years for optimum care, cooperation, transparency, and  patient-centered care, which results in the saving lives, saving $$$, and the highest quality of life for all patients.  It has happend in a few centers but certainly not in most.

If the clinics are not going to push for fistulas, and push for home dialysis (HD and PD), and push for a high quality of life for ALL of their patients, the answer may be a PAC to lobby congress to enact legislation which will make enforcement of high quality care routine and possibly change the current limits on Medicare.  We can't do it individually or it would already have happened.  United in a PAC we could.

[BigSky]

The person gave very specific things that were not being done, refused etc. etc.  and that it was much more than just paperwork. 

Sure the clinic may forget to switch the phone line to fax.  I highly doubt it because in this day and age such places usually have a dedicated fax line and usually more than one phone line. 

Personally I doubt a person would institute a three strikes rule if it was what you allege. Mainly because of the potential hassle with medicare and or lawsuits that could happen if the patient had evidence to the contrary that they were indeed complying with the rules.


With everything of importance, there has to be consequences for those that refuse to abide by the rules and break them on a consistent basis.  If their wasn't any consequences, why should they follow any of the rules in the first place?

[billable]

Home treatment is a big responsibility.  If you can't be responsible and do the required paperwork, you should not be on a home program.  For one thing, it is very important that the treatments are done right.  If you aren't able or willing to follow the procedures on the paperwork, are you doing the treatments properly?

The second reason it is important, the flowsheet is what the clinic uses to get medicare reimbursement.  It is there proof that the treatments were done.  Billing without it is medicare fraud. I have my wife's flowsheet set up in excel and I fill it out in my laptop, save it and email it to the clinic.  If you are on this board, you have access to a computer.  Ask your clinic if that is an option.  Our flowsheet is designed for nxstage, but I will be happy to share it with anyone that wants it.  I have a copy on my website, www.caregivertalk.org.  It is in the dialysis forum.  Feel free to download it or email me and I will send it to you.  bill.ables@gmail.com

[angieskidney]

my website, www.caregivertalk.org. 

Wow you even have the IHD icon on the bottom linking back here! That is cool

[billable]

Thanks.  I have found a lot of useful info here.  Thought it was important to share it.