E-mail updates
Follow on Twitter
Subscribe to RSSWhy is the government withholding data on clinics that perform dialysis treatments? NBC News teamed with the investigative group ProPublica. Senior Investigative Correspondent Lisa Myers reports.
Why is the government withholding data on clinics that perform dialysis treatments? NBC News teamed with the investigative group ProPublica. Below are links related to the report.
Diagnosing Dialysis: More from ProPublica's ongoing investigative series
http://www.propublica.org/topic/diagnosing-dialysis
The Dialysis Facility Tracker (http://projects.propublica.org/dialysis/)
A site is for dialysis patients and others who want to learn about the quality of care at individual dialysis clinics. Among other things, you can learn how often patients treated at a facility have been hospitalized, report certain types of infections or are placed on the transplant list.
ProPublica: Data shines light on dialysis disparities
http://www.propublica.org/article/dialysis-data-once-confidential-shines-light-on-clinic-disparities
ProPublica: Inspection backlogs weaken dialysis oversight
http://www.propublica.org/article/led-by-california-inspection-backlogs-weaken-dialysis-oversight
Knowledge is Power: A how-to checklist for choosing the right dialysis facility
http://www.pjwa.com/resources/knowledge_is_power.pdf
National Kidney Foundation
http://www.kidney.org
Dr. Barbara Murphy of Mount Sinai Medical Center explains why dialysis is necessary for certain patients and the risks involved with the treatment.
Maria Gordels, a dialysis patient, explains the time and effort required of her by the dialysis treatments.
Leave a Comment:
Lester, My husband's parents had a dear friend who underwent dialysis and it was an ordeal for
her and she eventually died because of it. As for the Scott sisters, they got the shaft. A life
sentence for robbery!!! An injustice, surely. Hope to see your broadcast Friday night. Phyllis
Lester,
Can you tell me how I can get in touch with Lisa Meyers. My Dad passed away from a similar situation and I'd like to get more info from her. It was through the Davita Dialysis Center in New Jersey.
Thanks!
As a Dialysis Patient Advocate, daughter of a dialysis patient, who recently died, and retired Registered Nurse, I have to state that our government, Centers for Medicare and Medicaid Services (CMS), needs to take a closer look at that care which is being given in dialysis centers. CMS needs to provide sufficient funding to the states, who act as their agent and inspect dialysis facilities. CMS has a responsibility to Medicare beneficiaires to ensure they receive safe care. The day to day care in dialysis units is what is the foundation and determines if a patient is getting good safe care. If a patient has good lab numbers that is great, but if that patient is acquiring infections due to staff not implementing correct practices, or if the patient is being retaliated against for speaking out to ensure safe care is being delivered, then this is not safe quality care. We posted the California dialysis facility surveys to our website www.qualitysafepatientcare.com after receiving requests from patients. Infection is the number two cause of death in this vulnerable population and is the most frequent cited deficiency when inspectors go into a facility. The inspections (surveys) clearly show if a patient is receiving quality safe care. However, one problem is that a sample of patients is taken. These patients have their medical records reviewed. If the inspectors find a major, serious problem with on patient in the sample. my question is "What about other patients out of the sample? Did they have the same problem. Even though there are federal regulations there is no enforcement to ensure compliance. If, for example, California restaurants are fined for not having caloric counts next to menu items then why can't dialysis facilities be fined for infractions that injury, harm or kill. CMS needs to FUND states so that surveys can be conducted timely. This must be done.
Roberta Mikles RN BA
www.qualitysafepatientcare.com Dialysis Patient Advocate, San Diego, CA
I hope people understand not ALL clinics are "bad" I was a Hemo-dialysis Nurse for 10 yrs. Dialysis was a life line for my patients awaiting transplant.....many of whom were transplanted, and live productive lives today.
Yes, there are good facilities that provide quality safe care and then there are those that do not. The Propublica articles, including the Dialysis Facility Reports, support our thinking (Advocates 4 Quality Safe Patient Care) that there are many units that are not providing quality safe care. There is more to quality than the new QIP (Quality Incentive Progam)> I would suggest that Dr. Berwick take a look at the faciity surveys and then start working towards providing sufficient funding for states to inspect timely.
Roberta Mikles
www.qualitysafepatientcare.com
No mention was made about paratineal dialysis. I'd like to hear a discussion regarding it.
I think peritoneal dialysis was not included because it is done at home by the patient rather than in a dialysis clinic.
I been a dialysis patient since 2004 and I must say that I have had many ups and downs, but so much goes into the paper side patient is often forgotten about. Dialysis has come a long way, but has a long way to go. Barely alive?
I was on dialysis for two-and-a half years before I had a friend donate on of his to me. Without asking anyone to be a donor for me I had eight people volunteer to be tested, he was the only match. On the cadaver donor list people are waiting like 5-7 years. During your time on dialysis your life is in the units hands. Some are good some are bad. Even techs and nurses within the same unit are good and bad. many doctors who run the units are too cheap to give the best. It is a lot for these sick people to be there own advocate and it is hard to know when someone isn't doing what they are supposed to do with you as a patient. I read and learned so the I could watch for human error. I still had vert dangerous human mistakes almost kill me. Many places make rules to make it hard to be your own advocate because they get defensive.
My husband picked up an infection that eventually resulted in his death from our local dialysis center. It was closed for long time after that to replace water lines. I heard many other patients got sick first though. I was told infection and death was an expected risk, and not their fault. I wonder.
Not once did anyone mention nocturnal dialysis or NxStage. More people should be given the choice to do more frequent dialysis at home; this leads to much better clinical results. Not everyone can be transplanted, and those who are ineligible for transplant need to have access to better dialysis. The current template of 3xweekly keeps people alive but not much else. It doesn't have to be this way. I know that Propublica's report focussed on in-clinic dialysis, but our attention needs to be directed to OPTIMAL dialysis whether it be at home or in clinic. I would urge NBC to report on how dialysis needs to be improved.
Great idea but even though doctors are supposed to tell patients of their options. Do they really? I don't think so and its all because of contracts and financial interest. I don't agree with NxStage but people do have the right to know. There are other home treatments as well that I support more fully like that one where the nurse goes to the house and performs the treatment. Great comment.
I agree with the need for more focus on home therapies. Unforunately home dialysis of any form takes a lot of committment from the patient and when it is home hemodialysis from a partner as well. It is easy to say we need more but there is not that much real interest. Many people have become use to the idea that someone else should take the responsibility for their care and are not willing to give up more time to go on home dialysis. Yes, many are interested in doing the treatments at home but not to do the work involved and take the time (up to 6 weeks) to get the training that is needed to perform home treatments. With this disease already taking up so much of ESRD patients' lives many are not able to cope with the rigors and responsibility of their own care - they find it too overwhelming to just deal with the diet and medication regimen and going to the clinic for treatment. As for treatments provided by staf in a patient's home - what percent of patients can afford to pay for a nurse to come to their home and perform the treatment? The government is not paying for home dialysis nurses or technicians and with the current reimbursement structure, the clinics (private or corporate owned) could never survive financially if they were to send staff for home treatments. Further problem with staff assisted home dialysis is the lack of oversight for the person doing the home treatment - if you think they don't care about what they do in the clinic what makes you think they would be more concerned in the home setting? Also, patients doing their own home therapies are not always any better at infection control practices - on the contrary, many are more lax. The current situation is not perfect, but it is not all the dialysis clinics' or personnel's fault. There are a lot of process issues and outside influences that contribute to the problems and government funding for all areas (from payment for treatments to paying for oversight) is at least in part involved in this. Nexstage requires daily treatments but Medicare does not pay for more than 14 treatmetns a month unless there is a medical reason for more days and that has to be proven to Medicare for each patient. There are other methods for home dialysis but those take more steps and might be more intimitating to a patient or partner to learn. Just pointing the finger to blame the doctor or the nurses is truly unjust - while there are those out there that don't perform well, most are in it to make someone's live better one patient at a time. Patients do have some responsibility in their care as well and in many places they are asked to participate in safety and infection control practices, such as access cleansing, making appointments for follow-ups with surgeons to get the proper access placed to reduce infection risk, checking their machine set-up prior to allowing a staff member to put them on the machine. As I said it is a group effort let's not just throw stones at a group for the sake of throwing stones at someone. I am a nurse, I have had family members in my clinic, and I had a friend on home dialysis - I know what committment his wife made to keep him alive as long as she did. I also have seen many patients start home training and give up after the first week or two because it was more than they bargained for and so much less convenient that they thought it would be - no more show up and get hooked up, at home it's do it yourself. I see many patients being asked to to things for their own health and not doing them because it is easier not to - so again, let's not throw stones without a clear target.
The TRUTH has never hurt anyone . TRUTH encourages better performance and responsibly behavior .
Dialysis therapy today has become an expensive crisis in the USA and other countries. Tax payers are footing the bill of billions of dollars per year to keep these patients alive and majority of these patients don't work nor have insurance at all. Dialysis clinics are overcrowded and stressful so mortality for those patients goes up!
How can the overcrowded and high cost be controlled?... sending dialysis patients home to do their own dialysis and by bringing nano dialysis to the masses or by allowing dialysis patients to refuse dialysis and just go home to die with dignity.
If you want the best support from a dialysis clinic, you will most likely find it at a Non-Profit Dialysis clinic....
Gus Castaneda
http://dailyhemo.org
Lester, I was just reading an article dated Dec. 31, 2010 BBC News on Bloody Sunday which was
so interesting March 7 will be the last commemorative march. The consensus is that it should
be promoted in a way that celebrates achievement. Others differ strongly. As long as they
have strong legs, they will walk. Happy New Year!!! Phyllis
PS Lester: March 7 is my brother's birthday and I believe your's is March 9 Phyllis
I been own Dialysis since June of 1998 my, arm was damage very badly twice June and July of 2005, each incident i had to get emergency surgery. After that there were time i received meds that where not ordered for me and times i did not get meds when then where orderd for me. So far i had five surgery's because of the injurys that was done to my arm in the last five years and need one more. In November 14 2007 i received a letter from Davita Lawyers telling me that they will no longer treat me at any of their facilities, as of November 15, 2007. They sent a list of non Davita dialysis centers out town and State for me to go to. For the last three years i have been getting my treatment at my local Hospital, which treatment there can end for me at ant time. a Jury found Davita guilty of Injuring me by Neglience in October 16 2009. The Public really need to know how some Dailysis are being treated at some of these facilities. IF was not for GOD and my Patient Advocate Arline Mullins Lane i don't think i would not made it this far. Thanks NBC Nightly news and Propublica for written and talking for US Dialysis Patients. WE REALLY need the Goverment to really start looking out for us. ITS VERY SCARY and should not be like that, Im not scared any more since i been getting my treatment at the Hospital they make you feel safe only NURSES are working with you. At the center they where days i walk in threw the Front Door but felt like i may be roll out the back Door on a Strecher.
Dialysis sucks for all involved but there really are fantastic clinics out there with high quality staff. I completely agree that information should be readily available so individuals can make an informed decision but sometimes these stories encourage a "jump on the bandwagon" all bad mentality. I worked in dialysis for many years and both of my parents were on dialysis prior to death. The alternative to dialysis - if a transplant is not readily available or they are not able to get a transplant is death. ---- I think it should also be noted that although Medicare pays billions of dollars in treatment each year that the Medicare rate does not cover the cost of one treatment. Centers - regardless if they are for profit or non for profit- have to do with less.
Dialysis units may vary tremendously in quality, but what if 90% of dialysis were completely preventable? In 2002, I published a paper in the medical literature showing how to prevent kidney failure due to diabetes or high blood pressure, i.e. 90% of kidney failure. I'm afraid that my paper has received no attention in the media or from the renal community. Its suppression evokes the Tuskegee syphilis experiment, when blacks with syphilis were kept away from treatment. Dialysis affects people of color 3-5 times more than whites. Please see http://tinyurl.com/healthcrime for details.
We are happy to assist people with more information regarding choosing a dialysis facility and how best to assess the safety of your facility. Feel free to make contact with us at www.pjwa.com.
You can also find a safety checklist at http://www.pjwa.com/knowledge_is_power.pdf
This is a great start! I agree that reports should be made available to the public but more so reports need to be reflective of each facility. The goverment often attempts to compare all facilities utilizing the same measure of standard. This can result in a skewed view of facility performance. Each facility has a population some sicker than others. When you measure against the standard it will show that facility as a poor performer when in essence that is not the case.
I congratulate NBC and propublica on this project but there is way more to this story than what meets the eye. Keep digging you are on the right track.
Great Investigation,,Thanks,,,for the Truth!!