My Dialysis Center Rant

[wj13us]

Having had a transplant myself I spend a lot of time volunteering at the Maryland facility responsible for transplantion in the area (Living Legency Foundation) and Donate Life Maryland.  I do a number of things such as being in their booth at fairs, health fairs, special events and such.  One of the duties is to occasionally give talks about organ donation.  One day I was talking with the volunteer coordinator about ways of getting the word out.  I had mentioned that I'd be willing to go to dialysis centers to give talks about transplantation.

The coordinator told me that dialysis centers would not allow that.  When asked why the answer almost knocked me off my chair.  She told me dialysis centers do not like to promote transplantion because its bad for business.  I was fuming when I heard that.  I also volunteer with the National Kidney Foundation so I do get the word out about transplantion.  But any dialysis center that has that attitude, if you ask me, is bordering on criminal activity.  Unethical to say the least.

Is this common?

Bill

[carol1987]

My dialysis center had a high rate of transplants... but I think that comes more from the individual patients nephrologists.....

I was only in the center for a month... but did not see any information about transplant come directly from the center .....

[Meinuk]

This should NOT be common.  Dialysis Centers are MANDATED to inform patients about their treatment options. if you hear about this again, get the name of the unit and call the network. 

Of course in the real world enforcement is tough.  It will get easier when Facilities understand that people know what they are supposed to be doing, and we are all watching.  Keeping a patient away from any optimum renal replacement therapy (HDHD, PD, Transplant)
due to greed is ______.  Fill in the blank with any extreme word of your choice. (mine begins with M)

Here are the rights and responsibilities for Dialysis Patients (Bolding my emphasis):

Patients' Rights and Responsibilities
As a person with kidney failure, you have certain rights and responsibilities. When you go to a treatment center, ask for a copy of your rights and responsibilities. This will help you know what to expect from your health care team and what they can expect from you. Your center may have lists like the following.

From: http://www.medicare.gov/Dialysis/Static/PatientRights.asp?dest=NAV|Home|Resources|PatientRights

Your Rights
I have the right to be told about my rights and responsibilities.
I have the right to be treated with respect.
I have the right to privacy. My medical records can’t be shared with anyone, unless I say so.
I have the right to meet with my whole health care team to plan my treatment.
I have the right to see the dietitian for help with food planning and the social worker for counseling.
I have the right to be told about my health in a way that I understand.
I have the right to be told about and to choose my treatment options.
I have the right to be told about any tests ordered for me and the test results.
I have the right to be told about the services offered at the center.
I have the right to be told about the process of dialysis and dialyzer re-use.
I have the right to be told about any expenses that I have to pay for if they are not covered by insurance or Medicare.
I have the right to be told about any financial help available to me.
I have the right to accept or refuse any treatment or medicine my doctor orders for me.
I have the right to be told about the rules at the treatment center (for example, rules for visitors, eating, personal conduct, etc.)
I have the right to choose if I want to be part of any research studies.

Your Responsibilities
I need to treat other patients and staff as I would like to be treated, with respect.
I need to pay my bills on time. If this is hard for me, I can ask about a payment plan.
I need to tell my health care team if I refuse any treatment or medicine that my doctor has ordered for me.
I need to tell my health care team if I don’t understand my medical condition or treatment plan.
I need to be on time for my treatments or when I see my doctor.
I need to tell the staff at the center if I know that I’m going to be late or miss a treatment or visit with my doctor.
I need to tell my health care team if I have medical problems, am going to the dentist, am being treated by another doctor, or have recently been to the hospital.
I need to follow the rules of the center.
I need to get to and from the center for my treatments. I can talk with my social worker if I need help doing this. Medicare does not pay for transportation.

When State Surveyors go into a dialysis unit, they inspect the patient charts ot see if the proper education has been given to patients.  This is from the interpretive guide for state agencies:  http://www.networkofnewengland.org/CFC/InterpretiveGuidelines.pdf

V562 (d) Patient education & training
Dialysis experience, treatment options, self-care,
QOL, infection prevention, rehabilitation

Documentation of education in record Conditions for Coverage
CMS CPM 4/1/2008

[sullidog]

Nope my dialysis center promotes transplantation.

[Meinuk]

Two here are three resources on dialysis treatment modalities ALL include Transplant as a treatment:

Medicare's PDF: You Can Live: Your guide for living with kidney failure
http://www.medicare.gov/Publications/Pubs/pdf/02119.pdf

NKUDIC's: Kidney Failure: Choosing a Treatment That’s Right for You
http://kidney.niddk.nih.gov/kudiseases/pubs/choosingtreatment/index.htm

NKF's PDF: Choosing A Treatment For Kidney Failure
http://www.kidney.org/atoz/pdf/choosing_treat.pdf

[jeannea]

My dialysis center promotes transplant but not for those who are non-compliant. My doctor is very strict that only those who would be good candidates get referrals. So we need to behave. But that's terrible to say they won't talk about it.

[PVUgrad]

When I saw RANT for my center, I thought of something else. They are ALWAYS 2 hours behind, due to the 1st shift nurses calling out.

Being an advocate for my husband, who can no longer speak, (stroke), is there anyone I can call to report this? I spoke to a patient this morning who was to go on at 6am, yet once again no nurses showed up...the waiting room was packed at noon with the 10:30am shift. He told me that it has been like this since 2004!!!!!!!!

[M3Riddler]

When I saw RANT for my center, I thought of something else. They are ALWAYS 2 hours behind, due to the 1st shift nurses calling out.

Being an advocate for my husband, who can no longer speak, (stroke), is there anyone I can call to report this? I spoke to a patient this morning who was to go on at 6am, yet once again no nurses showed up...the waiting room was packed at noon with the 10:30am shift. He told me that it has been like this since 2004!!!!!!!!

PVUGrad,

I would speak with the social worker and then ask to make an appointment with the center administrator.  Ask when the center opens to verify and also let your nephrologist know.

///M3R

[PVUgrad]

Already spoke to them. The social worker is MEEK! And I had a meeting with the clinical director, charge nurse and someone called or she happened to be there, a QC nurse for the Davitas in our area on Tuesday. Voice my concerns, but I think it feel on deaf ears.

The nepho doc is a reality young doc and only seems to treat patients according to their "labs" and not the "whole patient" meaning not taking into account other problems.

Example....My husband has had several problems that has left him like a ALS patient. He is in there, know what he would say if he could, but can't. So they treat him like he is retarded. DAMN, he got his Masters in Peds as a PA, and can remember more than I can. Anyways, the doc, without speaking to either of us, put him on 2400mg of renagel without even bother to see he is on tube feedings that are low in phosphorus.

Next thing I know he is in metabolic alkalosis, due to his Co2 going to 32...which was due to the renagel.

I don't know, but I feel this is just a money making thing from medicare?

[Brightsky69]

Yeah.....I never heard of that. My PD nurse was always telling me about her other patients who got called up for a transplant. And encouraging me that my "day" would come soon.  There were always posters around about different treatment options.