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In a comment to “The Best is Yet to Come Part II” Dr. Peter Laird writes:”How to improve dialysis is not a medical mystery, all of
the other developed nations have extremely more reasonable approaches and
outcomes than America that is dominated by profit and greed. The American
nephrologist has left their first mandate to do no harm and instead filled
their pockets with the wages of death from shortened and violent dialysis that
they themselves would never submit to.”
Like almost every profession there may be some bad apples,
but Dr. Laird’s comment is way off the mark in making the generalization that “The
American nephrologist…[has] filled their pockets with the wages of death”. Scapegoating nephrologists may have shock value but it is neither accurate nor points to potential solutions.
Even taking into account the risk of sounding defensive, the truth
is that we work diligently and humanely to take care of our patients. Unlike 40 years ago when the majority of patients died, nearly 80% now survive.
Could we do better? Sure. Are we doing badly? In the eyes of some yes, but for
the most part over 300,000 individuals receive quality dialysis care, feel OK on dialysis, and stay alive.
Nephrologists are a part of a team that includes payors, dialysis providers, nurses, and technicians who provide care. Rather than focusing one’s anger on one group of people (the
nephrologist) I suggest that we look at dialysis as a whole to see how we could
improve.
For starters, we should modify the metrics for
quality outcomes. Patient-centric outcomes: quality of life, depression, rate of
hospitalization, and yes, even mortality should be measured and reported. In a previous article I discuss in
more detail some of my issues with the Medicare QIP.
Don’t you think that it is laughable that one of the CMS measures for 2014 is “whether
the facility administers a patient experience of care survey”? Who thought that one up? These measures focus on processes, but we need more and better patient outcome measures.
Some would have us dispense with trials to test
whether more frequent dialysis and/or more time on dialysis improves outcomes, but funding these trials is important. Proving that a
therapy is truly beneficial compared to current therapy is necessary for it
to be accepted by patients, some of whom would rather settle
for less time or less frequent dialysis. And, results drawn from a well designed trial showing that a therapy works is essential for a payor to approve reimbursement for it.
I
agree that “nephrologists have to speak up for their patients” and stand-up and take responsibility. But should we be held responsible for all that is wrong with dialysis? We have limited influence on the inadequate measures for quality, the ongoing lack of trials, the lack of technological innovation, and the somewhat lax regulatory oversight.
Irrespective of where, or even whether, it is appropriate or useful to "fix blame" misses the point. We can pat ourselves on the back for better outcomes compared to "40 years ago" all we like, while ignoring a nearly complete lack of progress over the past 20.
ReplyDeleteNobody else but the nephrologist writes the prescription, so nobody else has a bigger "lever" by which to drive change. It's not about whose "fault" it is. Rather, it's a matter of who has the greater *responsibility* based on role and position within the equation.
As soon as we invoke the "we have limited influence" cop out, we have already lost. This mindset is how the status-quo maintains itself in all human endeavors. In truth, we should be telling ourselves "We have MORE influence than ANYONE else." So use it wisely.
I agree with anonymous. It's not about "fault" or "blame". It is about influence.
ReplyDeletePatients do not come in contact with the plethora of people who are defining the criteria for their care. We do not have the time nor the energy to research QIPs and RCTs and such. The nephrologist is our bridge and our wingman. You are the one to whom we look to ensure that we are able to have access to treatments that will make our lives less of a living hell. We have enormous responsibilities as it is. Our lives become so medicalized that we have no time to advocate and research. There are so many things that we need to do to ensure our survival and our own quality of life; we cannot be expected to do everything all the time. We can't do your thinking for you.
Dr. Singh, I entirely agree that nephrologists cannot be held responsible for "all that is wrong with dialysis", but for what that is RIGHT with dialysis do you take credit? What do you personally do for your dialysis patients that ensures their greatest possible quality of life, working within the confines of the current system? Where do YOU think the nephrologist fits into this puzzle? How do YOU use YOUR influence?
What is it they say? If you're not part of the solution, you're part of the problem.
What would you say is the biggest single thing that is "wrong with dialysis"?
Again, I'd be very interested to know if you were able to calm and reassure your distraught patient. If so, how did you do it?
May I respectfully ask...how does it feel for you when you tell a patient s/he must initiate dialysis? Do you ever go home at night and think about how that patient's life is about to change forever? Or have you done this so often that you don't think twice about it, anymore?
I believe that Dr. Singh is doing a tremendous good service by addressing these issues in his blog.
ReplyDeleteFew others in such a prominent position have taken such a bold position regarding the "Is more dialysis better?" question.
--but I also agree somewhat with the previous posters.
The time has long past for "Kum Bah Yah" lets-all-just-get-along-better sentiments.
American nephrology is STUCK. Outcomes are worsening, (or at best not getting demonstrably better). This unacceptable situation has persisted for DECADES--and mere congeniality will not break the impasse.
It's not the raw numbers or mortality statistics that are themselves unaceptable--It is the lack of improvement that is unacceptable.
Dr. Laird's rhetoric may at times come across as hyperbole, so it is no wonder Dr. Singh might feel a bit defensive. Take it with a grain of salt. An attack on complacency within the profession is not necessarily a personal attack on you.
Then again, to a PATIENT this is a matter of life and death.
Maybe as part of his or her mandatory training, every nephrologist should be required to undergo high-flux dialysis for a month.
What better way to comprehend how things might be improved in your unit? Or to assuage the fears of a patient through your own first-hand experience? There's nothing to fear, right?
Dr. Laird has PERSONALLY EXPERIENCED this. Have you?
Indeed, Dr Singh is to be commended for creating this blog. It is one of my go-to reads each day.
ReplyDeleteThe lack of improvement is unacceptable...yes, that's it. There seems to be new iphone technology every time you turn around, not to mention new Playstations and 3D wotsits. Technology seems to be advancing at the speed of light in so many other areas. Since the 1960s and Star Trek, we now have paperless communication devices the size of the palm of my hand. I can send a text message to the other side of the world in a matter of seconds, but we have had no parallel advancement in dialysis technology since communicators and transporters seen in sci-fi TV. Think of the technology advances we have seen in the military. Why has there been this profound stagnation in the realm of dialysis? Usually, the answer is found in the money trail. Who is benefitting from this treacle-pace?
Dearest MooseMom, it’s time we had dinner again and have a long talk. I agree that the nephrology profession has generally abdicated its responsibility for dialysis care, and it’s basically in the hands of the providers. But to say patients don’t have the time to advocate is an abdication of our responsibilities.
ReplyDeleteIt is indeed our lives and life or death issues are decided upon constantly. We have to be our best advocates, whether with our individual doctors or CMS and Congress. It is poor dialysis which is affecting our patient community. We cannot shirk from our responsibilities and expect our nephrologists to fight our fight. Patients MUST lead the fight for optimal dialysis.
The fight is also against nephrologists who have either abdicated responsibility or refuse to accept commonsense, if not scientifically, proven solutions. The original intent of the Medicare Kidney Failure (notice I didn't say ESRD) program was to rehabilitate patients, and for those not of retire age to allow them to remain employed. Obvioully that hasn't occured with 79% of dialysis patients between the ages of 18-54 are unemployed.
Why is it that 90% of nephrologists say they wouldn;t do conventional hemodialysis if they needed renal replacement therapy, and only approximately 9% of their patients are doing a home modality? What we have is an ethical dilemma within the nephrology profession. As such, we cna't depend on them to be our advocates. It is up to us!
Rich, I absolutely agree that it is up to we patients to be our own best self-advocates, but that is a task that is much easier for some of us though not for the majority of us. But the reality is that our nephrologists need to be our allies and not work against us by consistently prescribing treatments that they themselves would never agree to.
ReplyDeleteWe shouldn't HAVE to advocate for compassionate, patient friendly treatment from PHYSICIANS, of all people. We shouldn't be made to plead, beg and cajole. We shouldn't have to fight anyone for decent, life affirming, life restoring treatment options. It should be self-evident. It is unethical and immoral to consistently offer less that optimal treatment when we ALL agree that it doesn't have to be this way.
Yes, patients should lead this fight because no one else is going to, are they?
Rich, what do you see as the single best result of patient advocacy in, say, the last 2 years?
Sorry...there are so many typos in my last post... s/b "us patients" and "...immoral to consistently offer less THAN..."
ReplyDeleteI always read this blog with great interest and it seems as though this topic has really hit home with quite a few followers, including me.
ReplyDeletePerhaps it is time for a Plato's Republic type argument on the role of a dialysis clinic and the structures that support it.
It is obvious that the current trend of McDialysis is not providing patients with either a solution to their problem (transplant) Dorry L. Segev, M.D., Ph.D reports that patients in "For-Profit Dialysis Centers Less Likely to Give Kidney Transplants".
But not only are patients not given a solution at McDialysis, in fact they are at a higher risk of mortality as well "Dr. Pushkal Garg of Harvard Medical School reports that patients at "For profit" clinics were 20% more likely to die during the study period (3500 patients)
At the same time you have the large private Dialysis chains getting bigger by the day.
Was dialysis not supposed to be a temporary alternative until a donor could be found?
There are of course cases where transplantation is not an option and dialysis is the only alternative but it seems as though when profit comes into play this becomes the norm.
We can talk about quality of life and less intrusive care with minimal pain but this does not change the fact that patients are dependent on dialysis until a donor can be found.
So I boldly suggest that the goal of a dialysis clinic should be to "Get the patient off dialysis"
I would also argue that it is in the interest of the patient to be strongly involved in this process using all modern tools available to him/her (social media, internet, etc.) in order to speed up the process.
Perhaps there is someone out there with much more experience than me who could paint this "Platonian Clinic" for us to keep thinking about.
And to the doctors out there reading this: "Who guards the guards?"
We put our trust in you since you are supposed to hold yourselves to higher morals than the rest of us. When you fail, the system fails.
"McDialysis"...LOL!
ReplyDeleteKristoffer, there are so many people on dialysis who wouldn't survive transplant surgery; what would you do with them if the purpose of dialysis would be merely to serve as a bridge to transplantation?
I think a better goal is to "Keep people from having to resort to dialysis in the first place", but for a goodly number of people, their kidneys will fail eventually no matter what, and then some of THEM will never qualify for transplant surgery.
"Keep people from having to resort to dialysis in the first place"
ReplyDeletePreventive medicine sounds like something that a Dialysis clinic should definitely be working with.
Perhaps going out to schools and teaching about obesity and diabetes and the effects of this might be a good way...
But there will of course be patients who end up on dialysis through kidney disease rather than through a poor diet.
Some of these patients like you say will never survive a transplant.
What do we do here?
Wearable devices should improve quality of life and finding a better way to gain vascular access should also do this.
But it seems as though as long as you have a health care system that needs to turn a profit preventive measures do not make economical sense and therefore will not be implemented......
I come from a Nordic country so healthcare is govt. operated and not profit making. I have a feeling this is tainting my views....=)
"But should we be held responsible for all that is wrong with dialysis? We have limited influence on the ___blah blah blah." No, of course the nephrologist is not solely responsible for a system that fails to adequately reward outcomes, or impose consequences.
ReplyDeleteHowever, the nephrologist is absolutely 100% responsible for the actual dialysis prescription. Not 99%. Not 98%. 100. The overwhelming majority of the time in the US this is not consistent with would be personally chosen. Each time this occurs, it again gives in effect a stamp of approval.
You make a choice. You can either keep making excuses, or start making a difference. One physician, and one patient, at a time.
Kristoffer, I lived in the UK for 20 years and have many friends in Norway, so I understand your viewpoint. I think you may find that there are a lot of Americans who agree that a for-profit medical system lets a lot of patients down, especially when it comes to basic preventative care.
ReplyDeleteDr. Singh, I'm still very curious to hear how you talked your distraught patient off the proverbial ledge!
ReplyDeleteIt's really too bad that AST-120 has yet to receive FDA approval (for this purpose), despite literally millions of safe Japanese prescriptions spanning more than a decade, used to reduce uremic symptoms and delay dialysis. http://www.hindawi.com/journals/ijn/2012/376128/
ReplyDeleteIf uremic toxins and AGEs cannot be adequately dialyzed, the rationale is to prevent their absorption in first place. It has even been suggested that this drug is a major factor in the superior first-year survival seen in Japan, nearly triple the US.
These delays in dialysis initiation in Japan are estimated to be on the order of 18 months, often two years. Instead, the FDA has demanded yet more large RCT's (EPPIC and EPPIC-2) to assure us that a drug millions have taken is safe. These trials are now completed, but as of yet unpublished.
Anyway, what to the Japanese know? It's not like their outcomes are any better than ours. Wait, never mind. . .
And, we all want to delay dialysis as long as possible, right?