There has been reform. A new Medicare benefit that took effect 1/1/2010 allows physicians, advanced practice registered nurses, or physician assistants to bill Medicare for providing education to people with Stage 4 CKD (GFR <30). The education is to include a long list of topics, including all treatment options, diet, etc. The education can be offered to individuals or groups. The goal is for patients to know enough to choose the best treatment for them and to be active participants in their care.
There is accountability. New dialysis regulations that took effect 10/08 require dialysis clinics to provide education on all treatment options, including home dialysis and transplant, to their patients, whether or not the clinic offers those treatments. They’re supposed to provide resources, including information on where treatments they don’t offer are offered in the area. They’re supposed to screen patients for home dialysis and for transplant. Tools have been developed to help them do this, including a tool you can find on this site called the MATCH-D (Method for Assessing Treatment Choices for Home Dialysis). When Medicare surveyors (usually from the state health department) site visit dialysis clinics, they are interviewing patients and staff and reviewing medical records to assure that clinics are providing the education they’re supposed to be providing.
I’m sorry you weren’t well informed before but hopefully now that you’re on dialysis, you’ll be getting the education you need. Be aware that most patients can do more than one type of treatmewnt so knowing more should help you choose the best treatment for you.