March 18, 2010 - An important, remarkable, and memorable Renal Physicians Association (RPA) Annual Meeting was held March 12-15 in Baltimore. The most provocative presentation was given again this year by Dr. Tom Parker, who provided an update on the 2009 Boston ESRD conference and the interactions of its steering committee with officials at the Centers for Medicare and Medicaid Services (CMS). An indication of how much impact the Boston conference has had was evident by the presence and participation of CMS’s chief medical officer, Dr. Barry Straube, at the American Association of Kidney Patients’ dinner on March 13th that honored Dr. Parker. Remarkably, these two men did not know each other a year ago. Dr. Straube also spoke to the RPA conference attendees on March 15th.
In summarizing the Boston ESRD conference and the consensus thinking that has followed, Dr. Parker called for the end of many of the foundations of end-stage renal disease (ESRD) medical care for the last 20-30 years:
It was frustrating that Dr. Parker could still not comment on changes that are being considered by CMS for implementation. However, judging by Dr. Straube’s comment that he now considers dialysis adequacy to be a composite of measures, changes appear to be coming.
Dr. Allen Nissenson gave further hints about the long-awaited work by Dr. Brennan Spiegal and his UCLA colleagues. They found that you can take two facilities with the same case mix, Kt/V, time on dialysis, albumin levels, etc – all the usual biochemical and treatment measurements – and the outcomes can still vary as much as 39%. In the past, it was reported that they were looking at over 150 variables such as personnel issues, communication patterns, patient education, facility environment, staff morale, etc. to explain these differences. Dr. Nissenson “leaked” that they have identified five variables that are associated with a 31% variance in mortality between similar CPM-performing facilities:
Dr. Straube from CMS was the next-to-last speaker at the conference. He is both the chief medical officer and the Director of the Office of Clinical Standards and Quality at CMS. He is also a nephrologist.
Dr. Straube first emphasized that the HHS/CMS data is a national asset and will be more available to researchers. As a starting point, he suggested visiting www.data.gov.
He called for a resurgence in patient-centered care in ESRD, citing a need for:
Dr. Straube also said more attention would be paid to these clinical issues:
When he took questions at the end of his presentation, a question led Dr. Straube to comment that, “We should be outraged by (patient) cherrypicking. It is our responsibility to do something. It’s immoral.”
Editor's note: As it becomes more evident that our high-tech, corporate-based approach to ESRD care for the last twenty years has not delivered the best or appropriate care for patients - and considering Dr. Straube's call for a resurgence in patient-centered care - I believe it is time to redefine care in terms of patient life experiences. It was never the intent of the federal ESRD program to create hundreds of thousands of disabled and debilitated patients, as our system does today.
This reform movement has been led by corporate outsiders. Can we trust the major corporations to do the right thing for patients? Knowing that we have been going down the wrong paths for so long, what will be seen as the legacy of the current corporate leadership of FMC, DaVita, and Amgen?This message has been edited. Last edited by: Gary Peterson,
You made an editors note today in response to the review "Dialysis Prescription: A Modifiable Risk Factor for Chronic Kidney Disease Patients" that said "First, do no harm" and then go on to ask "Do the standard treatment orders in most dialysis facilities comply with the first rule of medicine?"
Even if we all agree that current therapy is not optimal, how do you conclude or why do you suggest, that current therapy is doing harm? Doing more harm than what? No therapy?
I am not the editor of RenalWEB but, as a member of the kidney community, I do feel compelled to add some comments about your "first do no harm" statement.
Harm can be done by omission as well as comission. We harm patients every day (or should I say three times per week?) when we use the word "adequate" to describe any medical treatment. We are doing harm each time a patient is relegated to a lesser quality of life. Patients should be treated with a focus on the ultimate goal of individualized rehabilitation--the ability to work and travel, to enjoy their family and friends, to be a vital part of their community. Would any of us accept any less? We are harming patients if we allow ourselves to view them as disabled, helpless or ignorant. We harm patients when we sink into the status quo--and stay there for a few decades--even though we know better. As a community, we must give more than lip service to the concept of patient-centered care and shared decision making.
The annual mortality rate for dialysis patients is in excess of 20%. Some of those patients choose to withdraw from dialysis simply because their quality of life is so poor that death is preferable. That is harm.
Dialysis is life saving, but saved for what kind of life? The 2009 Boston Conference organizers said it well, "We can do better! We must do better!" Not in 10 or 20 years, but NOW!
For the record: My late husband,a HHD patient for 25 years, enjoyed an enviable quality of life--work, family, leisure, and travel. A few extra treatments, longer dialysis times and a health team who practiced patient centered care made all the difference!
Denise Eilers, BSN, RN
Patient centered care, a few extra treatments and longer dialysis times in your experience made a big difference. I can see where those can be very positive but I can also see where they may be more readily implemented into HHD than into a traditional chronic dialysis where the vast majority of patients receive treatment.
Since patient centered care can be a rather broad concept, what specific aspects did you find most beneficial and how can we translate them into a chronic facility setting?
How do we implement extra treatments and longer treatment times into traditional chronic facilities? Extra treatments and longer treatment times do not come without extra costs? With the realities of the current financial situation and the fact that ESRD patients make up less than one percent of the Medicare population but use over six percent of the Medicare budget, how do we deal with those financial issues?
In reply to "Guest":
Patient centered care may be a broad concept, but there are no-cost steps that would help ensure its implementation, thereby improving CKD5 outcomes.
First and foremost, patient centered care is a mindset and an attitude that encompasses respect, shared decision making, and equality. From day 1, patients and care partners should be encouraged--and expected--to become contributing members of their health team, not viewed as an entity separate and apart from professionals. Stop thinking of patients as helpless and disabled. Do everything within your power to help patients stay as active and involved as possible whether that means talking to an employer or shifting a schedule so a Mom or Dad can volunteer at their kids' school.
Patients are not dumb, but medicine is not usually their area of expertise. Grab any opportunity to educate in an interactive, non-threatening way. During my years of nursing, I have gotten in the habit of talking and explaining as I work, tailoring my remarks to the indivual patient needs. Encourage feedback by asking what the patient thinks or if they have questions.
Include patients and families in the decision making process. Don't limit that participation to formal care planning meetings. How can we expect patients to follow through on treatment decisions if they were not allowed to be involved in the process? A simple "what do you think?" makes a patient feel valued.
I have often thought that dialysis units should follow the example of long term care facilities and create "resident councils" comprised of family, patients and community members who would act as non-binding advisory committees, offering support and constructive advise to management and staff. A sort of PTA of the kidney community??
What about getting patient feedback by initiating a very simple scale similar to the numeric pain scale? Ask patients before dialysis: "On a scale of 0-10, where zero is lousy-feeling and 10 is feeling terrific, where are you on the scale?" It could be repeated after treatment, as well. Maybe not terribly scientific, but an interesting tool nonetheless! Or, as an alternative: "On a scale of 0-10, how was your dialysis treatment today?" Imagine the responses and conversation that would generate!
Ask patients if they are able to perform all ADLs but don't forget to inquire if their level of functioning is personally acceptable to them. Everyone has their own definition of quality of life. Listen as patients talk about their life outside the dialysis unit and truly hear what they are saying. They may be telling you far more than you(or they)realize.
Do your best to offer evening hours for those who work during the day.
Don't get defensive or label patients as difficult if they question procedures or want more information. If the tables were turned, wouldn't we all do the same?
Get patients involved in the unit and the larger community.
Rather than issuing edicts and telling patients what they should or shouldn't do, try a different approach: "Here's what you and I have discussed that is important for your health. How can we help you make it happen?"
Patient centered care is not a one-way street either. If patients are to be equal partners on the health team, then they also bear part of the responsibility. This includes a willingness to learn about their condition, to communicate concerns to professional team members and to participate in decision making. Take into account age and comorbidities.
In a perfect world, everyone would have the choice to dialyze longer and more often and Medicare and/or insurance would cheerfully reimburse for added treatments. But that is only a part of the picture.
"Patient centered" is not about biochemical markers, but rather about the patient experience, quality of life and the art of caring.
Denise Eilers BSN, RN
and HHD care partner (1980-2004)
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