Does anyone know whom I would write to to urge lawmakers to institute changes in the way dialysis patients are cared for in nursing homes?

This afternoon I'm going to the funeral of yet another dialysis patient who lived in a nursing home-- he was constantly fluid-overloaded, which contributed to his death. The nursing home staff were indifferent to his special dietary and fluid needs as a dialysis patient, so no one cared how much he drank every day. I think the mortality rate could be improved if nursing home staff were made aware of (and adhered to!) dietary and fluid restrictions of dialysis patients. If staff is willing to help elderly patients with physical tasks, helping patients stick to their dialysis diets shouldn't be a problem.

There are a couple ways to deal with the problem of nursing homes that don't understand how to care for dialysis patients:

1) The proactive approach:
Some areas have offered education to one nursing home where the dialysis facility has one or more patients OR to several nursing homes' personnel in a professional education seminar. At minimum, education should include information about kidney disease, treatment options and how they can affect patients, complications that may arise, why diet/fluid restrictions are needed and important, why giving medications on time is key, how patients may react emotionally to kidney disease and what nursing home personnel can do to improve the patient's health and quality of life.

The National Kidney Foundation of Michigan developed a manual for nursing home personnel several years ago that may still be available. You can reach the NKF of Michigan at (734)222-9800.

2) The reactive approach:
The same state agency that surveys dialysis facilities for Medicare also surveys nursing homes. Find out how to contact the survey agency in your state at: www.medicare.gov/Contacts/Home.asp by checking Quality of Care/Complaints and looking in the list provided for nursing home survey agencies.
OR
Write to your senators and representative about the special needs of dialysis patients that must be met if they are to stay healthy and out of the hospital. You can find your senators and representative at http://capwiz.com/c-span/dbq/officials/.


[Note: This message has been edited by Beth Witten]

CMS is now having opendoor forums regarding health care issues. ESRD and Nursing homes are a couple of the subjects. If you go to the website you can give your input into the subject you are interested in. The website is www.cms.gov/opendoor. They claim to be interested in hearing from health care workers and patients.

Thank you both for the links!

I'd like to point out that just because the man was a resident in a nursing home doesn't mean he gave up his free will. Perhaps the staff was uninformed. Or perhaps he insisted on doing what he freely chose. Unless he was conserved, the staff cannot force him to adhere to his prescribed regimen.

Many of my patients over the years have opted for what they deemed quality of life over strict adherence to treatment recommendations.

I'm guessing you've never been personally responsible for denying fluid to someone who's begging for it day in and day out. Of all the things I've done in over 20 years of nursing, that is consistently one of the most difficult. To say "that shouldn't be a problem" indicates to me that that perhaps you don't understand how truly difficult some of these medically-recommended lifestyle changes are.

Health care professionals are often so judgemental about non-compliance that many patients won't discuss their reasons for not complying unless gently questioned.

And lastly, did his physician actually order fluid restriction and a special diet? Often, because of the quality of life issues mentioned above, the patient and physician choose an unrestricted diet.

It's easy to blame nursing homes for all sorts of problems. It's seldom that simple.

I'm a dialysis patient, so believe me, I KNOW how hard it is to deny fluids-- I have to do it to myself on a daily basis!

Yes, this patient WAS on a fluid restriction, because he had a weak heart and major respiratory problems-- he'd drink so much, he couldn't breathe. He also had some sort of learning disability that made it extra hard for him to understand the damage that he was doing to himself by over-drinking-- that's the reason he continued to do it regardless of the problems it caused. Nobody monitored his fluids at the nursing home, so he figured it was OK to drink there. He responded when people 'got on his case' at dialysis, but if left alone, kept on doing what he was doing... he didn't seem able to remember from day to day that he should restrict his fluids. Maybe he should have been under conservatorship, but he was geographically isolated after a divorce, and there were numerous family problems, too. Sad all the way around.