A Tale of Two Cities: The Story of Dialysis in America

[MooseMom]

I plan to write my newly elected GOP Congressman and ask him why, if he is an advocate of reining in spending and personal responsibility, we continue paying for a treatment that ultimately creates risk and almost actively discourages patients from speaking up out of fear of clinic retribution.

Am I wrong?  I know that dialysis saves life, but the way it is practiced in the US, it seems that it actively creates risk.  And THAT is why I have been so utterly terrified of dialysis...until I learned how to make dialysis far safer and far more effective, ie MORE dialysis.  Why do we funnel everyone into a treatment that CREATES MORE RISK?  That's what I don't understand.

People believe what they WANT to believe, and too many people, both patients and legislators, WANT to believe that "adequate" dialysis is fine.  As one of your posters wrote on your blog, there is no shortcut to living with ESRD if you want to be healthy.

[mogee]

MooseMom, when I began dialysis I was anemic and required EPO to maintain an adequate level of red blood cells.  After about a year of nocturnal hemo I was able to discontinue the EPO and now, five years later, my hemoglobin is uncomfortably high to my nephrologist.  Anemia in ESRD is not always caused by the loss of the kidneys ability to secrete EPO.  It is also caused by uremia, which shortens the life of erythrocytes.  Conventional dialysis is never sufficient to reduce uremia to the point where erythrocyte survival becomes normal, but nocturnal hemo and peritoneal dialysis are able to achieve such results.

In Canada there are always controversies over which treatments are worthy of funding and which are not.  Recently the government of Ontario has struggled with whether to fund early childhood interventions for autism, treatments that can cost as much as $100,000 per child per year.  Sex change surgery for transgendered individuals has also raised some heated debate.  Cancer treatments which extend life for weeks or months, but at exorbitant costs have also been controversial.  In each of these examples there is certain suffering to result from the decision to decline funding, yet funding remains a question.  The benefit to the patient is only one factor among many in deciding how health dollars are allocated.

I don't know whether my experience is typical, but I received a great deal of renal education prior to starting dialysis.  I knew many years ahead that I would eventually progress to ESRD, and for about a year before I needed dialysis I was placed in a "renal management" program.  As my kidneys declined I was encouraged to opt for home nocturnal dialysis, which was an easy choice for me ("You can eat whatever you want").  Keep in mind that it is also common for people to suddenly discover that their kidneys have failed.  I've met many people who have been diagnosed with ESRD in the emergency room and then sent directly to dialysis.

It is worth noting that the benefits of longer, slower dialysis have not been known for long.  Nocturnal dialysis began in the mid 90's and was not widely adopted until less than a decade ago.  Hopefully, the lessons learned in the last ten years will translate into more dialysis for everyone.  Dialysis every second day is a great idea, lets hope it catches on.  My sister's brother-in-law was a very large man who had difficulty managing his diet and fluid intake.  At age 54, after two and a half years on dialysis he suffered heart failure and died.  Not surprisingly, he died on a Monday morning.  I believe the proximate cause of his death was insufficient dialysis.  Strangely enough, when I told this to my sister she was incredulous.  "He always reacted badly to dialysis treatments" she said, "more dialysis probably would have been worse".

[Bruno]

The Australian system is identical to the Canadian and similar to the American in some ways. patients have the option of extended hours but must be prepared to do dialysis, pd or hd, at home but with plenty of support.
The majority do not follow this path for any number of reasons and it is these people who find themselves in a situation identical to Americans...3 sessions weekly each of 5 hours. This is for the same reason - money - in this case lack of it. The government won't or can't provide the funds that will enable more and longer sessions despite the fact that those managing the system know that longer and more frequent dialysis is more beneficial and produces better outcomes. What is happening here is that those who know the score...the younger people, the better educated, those able to access a site like IHD if you like, people willing to self cannulate and some awaiting transplants go to pd or hd...whilst the rest try and fit into a system that is vastly overstressed.
But I ask you all to remember one of the reasons this site was set up, a lot of people hate dialysis and will do as little as possible.
 You should see the comment I get when I post on IHD the fact that I do 24 hours of dialysis per week.

[MooseMom]

Mogee, thanks for explaining more about the relationship between anemia and uremia...I did not know this and am pleased to have learned something new.  Another reason to do longer dialysis.

I know that in the US when dialysis was first offered, longer sessions of dialysis at home was the norm.  It was only once the profit-making corporations got their hands on dialysis that the shorter sessions in clinic became standard practice.  So the mantra of more dialysis is actually an old one.

Bruno, you are right...there are plenty of reasons to hate dialysis and to be in that chair for as short a period as possible.  My own mother leapt for joy when her neph said she could take 15 minutes off her sessions.  But she never really understood the mechanics of dialysis nor the effects of short, violent sessions.  No one ever explained to her why she felt rotten so often, why she would cramp up and why her bp would plummet, and even worse, no one told her that it didn't have to be that way.  No wonder people hate dialysis!  I understand that the more educated and vocal of us are more successful in getting better dialysis, but perhaps we are the people who should advocate for those whose voices are too soft to hear.

[Hemodoc]

The Australian system is identical to the Canadian and similar to the American in some ways. patients have the option of extended hours but must be prepared to do dialysis, pd or hd, at home but with plenty of support.
The majority do not follow this path for any number of reasons and it is these people who find themselves in a situation identical to Americans...3 sessions weekly each of 5 hours. This is for the same reason - money - in this case lack of it. The government won't or can't provide the funds that will enable more and longer sessions despite the fact that those managing the system know that longer and more frequent dialysis is more beneficial and produces better outcomes. What is happening here is that those who know the score...the younger people, the better educated, those able to access a site like IHD if you like, people willing to self cannulate and some awaiting transplants go to pd or hd...whilst the rest try and fit into a system that is vastly overstressed.
But I ask you all to remember one of the reasons this site was set up, a lot of people hate dialysis and will do as little as possible.
 You should see the comment I get when I post on IHD the fact that I do 24 hours of dialysis per week.

I do about 24 hours of dialysis each week as well, just 5.5 times each week at a little over 4 hour sessions.  It is the only true survival strategy with dialysis, more frequent and longer duration.

[Bill Peckham]

The Australian system is identical to the Canadian and similar to the American in some ways. patients have the option of extended hours but must be prepared to do dialysis, pd or hd, at home but with plenty of support.
The majority do not follow this path for any number of reasons and it is these people who find themselves in a situation identical to Americans...3 sessions weekly each of 5 hours. This is for the same reason - money - in this case lack of it. The government won't or can't provide the funds that will enable more and longer sessions despite the fact that those managing the system know that longer and more frequent dialysis is more beneficial and produces better outcomes. What is happening here is that those who know the score...the younger people, the better educated, those able to access a site like IHD if you like, people willing to self cannulate and some awaiting transplants go to pd or hd...whilst the rest try and fit into a system that is vastly overstressed.
But I ask you all to remember one of the reasons this site was set up, a lot of people hate dialysis and will do as little as possible.
 You should see the comment I get when I post on IHD the fact that I do 24 hours of dialysis per week.

The guy who started this site came to see that what he hated was being under dialyzed.

[MooseMom]

Being underdialyzed is what eventually killed my mother.

[mogee]

Sadly, being underdialysed is the norm.  Even many health professionals do not understand how dramatically superior long, slow dialysis is to conventional dialysis.  Those of us fortunate enough to enjoy the benefits of better dialysis should preach the gospel, especially to new patients who may not be getting the straight facts from their dialysis provider.

[MooseMom]

Sadly, being underdialysed is the norm.  Even many health professionals do not understand how dramatically superior long, slow dialysis is to conventional dialysis.  Those of us fortunate enough to enjoy the benefits of better dialysis should preach the gospel, especially to new patients who may not be getting the straight facts from their dialysis provider.

Exactly.  But we can't let "fortune" determine whether or not we or anyone else gets better dialysis.

[Hemodoc]

Sadly, being underdialysed is the norm.  Even many health professionals do not understand how dramatically superior long, slow dialysis is to conventional dialysis.  Those of us fortunate enough to enjoy the benefits of better dialysis should preach the gospel, especially to new patients who may not be getting the straight facts from their dialysis provider.

Sadly, we have failed in that duty as well.  We do need to become more vocal but to do so, they have to give us access to the rest of the patients, something they control as well.

[MooseMom]

Well, we have access to patients via IHD, so that's a start!

[Hemodoc]

Actually, if everyone that read IHD would send Dr. Murray and email about her biased report as an example, that would be a start.  If we post every positive report in the news on optimal dialysis and criticize every negative report, I believe we have the power to begin making changes just by doing that.  Nothing wrong with advocating the right attention to the problem.

[MooseMom]

Actually, if everyone that read IHD would send Dr. Murray and email about her biased report as an example, that would be a start. 

I emailed her yesterday.  Since it's the holidays, I don't know if she has read it yet, but if she responds, I'll let you all know.  I also wrote to NBC.

[Hemodoc]

Actually, if everyone that read IHD would send Dr. Murray and email about her biased report as an example, that would be a start. 

I emailed her yesterday.  Since it's the holidays, I don't know if she has read it yet, but if she responds, I'll let you all know.  I also wrote to NBC.

I hope more follow in your example.

God bless,

Peter

[Bruno]

I think we do a disservice to the professionals (specialists, doctors and nurses) in the system if we think they don't do their best to change the system, I know they do in ours. The fact is some dialysis patients won't take the advice that is offered...if you watch this site you'll see it in action..and I include some of those on home dialysis who do know better. Look folks, some are even unwilling to stick a needle in their arm and to mind that's the start point for extended dialysis, at least it is here in Australia.
Many baulk at even going on dialysis in the first place.
There is a wider discussion going on here and it relates to the advisability of dialysis in certain circumstances...with the elderly for example. If I look at the daycare 3 x 5 hour weekly program at my hospital I see a lot of elderly people in there who are marking time. I've seen people brought to the centre by ambulance so there is no doubt the system needs discussion.

[Hemodoc]

I think we do a disservice to the professionals (specialists, doctors and nurses) in the system if we think they don't do their best to change the system, I know they do in ours. The fact is some dialysis patients won't take the advice that is offered...if you watch this site you'll see it in action..and I include some of those on home dialysis who do know better. Look folks, some are even unwilling to stick a needle in their arm and to mind that's the start point for extended dialysis, at least it is here in Australia.
Many baulk at even going on dialysis in the first place.
There is a wider discussion going on here and it relates to the advisability of dialysis in certain circumstances...with the elderly for example. If I look at the daycare 3 x 5 hour weekly program at my hospital I see a lot of elderly people in there who are marking time. I've seen people brought to the centre by ambulance so there is no doubt the system needs discussion.

Dear Bruno, I don't believe we need to include the elderly and infirm nursing home patients in this discussion so much as a need for better informed consent.  I was involved in hundreds of cases in my practice of medicine where we withdrew care after a truthful discussion with family members about expected outcomes and futile treatments.  Age by itself should not be the discriminator. ALL patients can benefit from better dialysis strategies, such as going to every other day dialysis which eliminates a substantial risk from the long weekend. The other issue is that is one of the largest excuses people use to attack the dialysis program as NBC just did a couple of days ago.  Yes, there are indeed patients started on dialysis who probably shouldn't be, but in reality, their individual mortality even with dialysis is excessive. If we exclude deaths in the first three months of initiating dialysis, what impact do these unfortunate folks who have really reached the end of the road have on dialysis outcomes anyway?

http://www.hemodoc.com/2011/01/nbc-commentator-dr-arthur-caplan-calls-dialysis-cruel-and-lousy-care.html

[Bruno]

I think there is a case for better informed dialysis outcomes with the young and certainly with the elderly and I don't mean to discriminate with the latter, but it is a fact that our western hospital systems are clogged up with older people and some discussion needs to take place even if it is only to keep them working. It makes no sense to refer people to dialysis where the only outcome an over stressed system can provide is to move from 3 x 5 hour to 3 x 4 hour sessions weekly as has been mooted here.
And by the way, we have a six day  dialysis week because we need to run at least 2 three day programs each week and it's hard enough to get staff for those programs anyway, let alone a Sunday.

 

[Hemodoc]

I think there is a case for better informed dialysis outcomes with the young and certainly with the elderly and I don't mean to discriminate with the latter, but it is a fact that our western hospital systems are clogged up with older people and some discussion needs to take place even if it is only to keep them working. It makes no sense to refer people to dialysis where the only outcome an over stressed system can provide is to move from 3 x 5 hour to 3 x 4 hour sessions weekly as has been mooted here.
And by the way, we have a six day  dialysis week because we need to run at least 2 three day programs each week and it's hard enough to get staff for those programs anyway, let alone a Sunday.

I don't doubt that as a factor, but as a physician and as a patient, that decision is best left between the patient and their doctor.  In my opinion, there are people that will use this extreme example to damage the entire program. I don't think we should be complicit with that.

[Simon Dog]

I'm sure even gun toting Republicans can develop ESRD.

You talking about me?

Back on the Dialysis topic - I've notice that docs are not very forthcoming with dark side news about "compromises made for cost".   My doc confirmed that EOD dialysis is better when asked, and even mentioned that the "third day" is the one with the most heart attacks - but at no point during the process of entering the dialysis system, signing consent forms, etc. was I told "you are getting three days per week which multiple studies conclude is sub-optimal, but is where your payer places you on the cost/benefit curve."

Patients REALLY need to do their own reading to get to the info that will not be automatically shared with them.

[Bill Peckham]

I'm sure even gun toting Republicans can develop ESRD.

You talking about me?

Back on the Dialysis topic - I've notice that docs are not very forthcoming with dark side news about "compromises made for cost".   My doc confirmed that EOD dialysis is better when asked, and even mentioned that the "third day" is the one with the most heart attacks - but at no point during the process of entering the dialysis system, signing consent forms, etc. was I told "you are getting three days per week which multiple studies conclude is sub-optimal, but is where your payer places you on the cost/benefit curve."

Patients REALLY need to do their own reading to get to the info that will not be automatically shared with them.

But this is why it makes no sense - right now it would be profitable to offer EOD schedules. Current reimbursement policies mean that the seventh treatment every two weeks would result in about a $70 bonus payment, and yet to my knowledge no unit is routinely offering EOD schedules. I know of one unit where EOD schedules were going to be trialed but in the end it never happened.


Based on financial incentives alone EOD schedules should be widely available.

[noahvale]

But this is why it makes no sense - right now it would be profitable to offer EOD schedules. Current reimbursement policies mean that the seventh treatment every two weeks would result in about a $70 bonus payment, and yet to my knowledge no unit is routinely offering EOD schedules. I know of one unit where EOD schedules were going to be trialed but in the end it never happened.


Based on financial incentives alone EOD schedules should be widely available.

"...meaning in effect the seventh treatment would carry a ~$70 premium. This gain would have to be weighed against the wage premium and possible tenant costs associated with opening on Sunday, but the higher average reimbursement and lower non-labor costs suggests EOD schedules would be viable with relatively few patients."  - Labor and associated costs are the highest costs of a clinic, and most states have staff to patient ratios (both techs and nurses) that must be met.
 

Beyond the straight revenue/cost analysis EOD schedules would be a financial plus if it keeps patients out of the hospital. Dialysis units pay a price when their patients are hospitalized, and they will benefit if EOD schedules keep their patients in their chairs, dialyzing. - Many providers are also contracted by hospitals to run in patient dialysis services.  So in actuality, they make MORE profit if clinic patients happen to end up in the hospital.  If a few chairs end up being open for the day, the charge nurse will call patients to come in early (which most want to do) and then either close the clinic earlier or let a staff member go home earlier.  This is a reality you fail to acknowledge.

"Based on financial incentives alone EOD schedules should be widely available." - I agree, so why won't the DaVita's and Fresenius's offer EOD in some clinics and increase shareholder profits?   Maybe because their professional bean counters believe actual costs and an unreliable patient population willing to follow an EOD schedule (just read on IHD the number of patients who don't even want to dialyze 4 hours p/treatment! x 3 weekly) undercut your premise. 

There would need to be a massive education/re-education effort put in place for EOD incenter dialysis to become viable.  It would need to start with nephrologists and "friendly persuasion" by CMS along the lines of the Fistula First initiative.

[jeannea]

Not related to cost, I think there could be a lot of confusion with EOD schedules. Right now people can say I know I'm busy on Wed from 11-3. But with EOD you have to know what week you're on and keep track. Then you're trying to schedule a doctor appt for 3 months from now. You've screwed it up and scheduled two things at once. Which do you cancel? Your cardiologist will charge a cancellation fee and not reschedule you for another 3 months and you still might get it wrong. So much of the dialysis population already has a little trouble keeping track of their lives. And then to add the nursing homes trying to keep it straight it would be tough.

In New Jersey, if you want to get a week at a summer home, you have to schedule your dialysis in Jan/Feb. many people would get the days wrong.

I understand the medical benefit of EOD. I just wonder about the practicality of it.

[Hemodoc]

Not related to cost, I think there could be a lot of confusion with EOD schedules. Right now people can say I know I'm busy on Wed from 11-3. But with EOD you have to know what week you're on and keep track. Then you're trying to schedule a doctor appt for 3 months from now. You've screwed it up and scheduled two things at once. Which do you cancel? Your cardiologist will charge a cancellation fee and not reschedule you for another 3 months and you still might get it wrong. So much of the dialysis population already has a little trouble keeping track of their lives. And then to add the nursing homes trying to keep it straight it would be tough.

In New Jersey, if you want to get a week at a summer home, you have to schedule your dialysis in Jan/Feb. many people would get the days wrong.

I understand the medical benefit of EOD. I just wonder about the practicality of it.

EOD is most easily implemented in the comfort of your own home where you also have the freedom to adapt to schedule needs.

In center, yes, advance appointments can be an issue, but if concerned, you can keep a calendar marked out in advance to avoid conflicts. I don't see this as a real issue with a modest amount of effort to make it work.