Needed: A well dialysis patient model of care that also addresses larger societal and environmental concerns

by Gary Peterson

At a time when U.S. lawmakers are examining the value and worth of all tax-payer funded services, dialysis patient groups should be proactive and take the lead in insisting on major changes in dialysis care. Leading this process will require a "big picture" view.

Looking back over my 36 years in the field, I believe there are four major shortcomings in the "big picture" of dialysis care:

1. No "well dialysis patient" model of care exists. ("well dialyzor")
2. The pursuit of optimal life outcomes has been minimal and they are effectively being ignored. Despite the psychological and overall health benefits, there are no meaningful incentives for patient employment and rehabilitation in the current system.
3. In terms of overall societal costs, the current system is penny-wise and pound-foolish. Instead of assisting them to be working and/or rehabilitated citizens, the system now creates hundreds of thousands of debilitated and disabled people — who consume even more societal benefits.
4. Patient groups need to take responsibility for the environmental and financial costs of dialysis treatments. Dialysis patient rehabilitation should address and focus on these responsibilities.

Dialysis care professionals would not accept the care that over 90% of their patients receive. Few will admit it, but the current model is a "sick patient" model of care. Based on Kt/V and/or URR, it focuses on two outcomes, death and hospitalization. Sadly, after more than forty years of chronic dialysis care, a "well dialyzor" model of care simply does not exist. Even worse, nearly all patient organizations have educational programs that accept and reinforce the sick patient model. New patients must figure that out for themselves.

Today's model of care is a chronic illness model that does not include patient employment or rehabilitation as realistic goals. This long-ignored shortcoming contradicts the original intent of long-term dialysis care and the justification for its funding with tax-payer dollars. Instead of optimal life outcomes, today's model of care targets biochemical markers (urea and hemoglobin) as measures of success, which has resulted in little improvement in survival over several decades. Until higher level outcomes are targeted, little improvement in patient life outcomes — such as long-term survival, employment or rehabilitation — will be seen.

Almost unnoticed over the last thirty years, the sick patient model of care has led to continually declining patient employment rates and the decimation of psychosocial services for dialysis patients. The result has been widespread debilitation, disability, and depression. Instead of producing working, tax-paying citizens, the current system produces hundreds of thousands of disabled people who consume even more societal resources. While Medicare's composite rate and bundling payment schemes have reduced dialysis treatment costs, they have had unintended consequences that have resulted in far greater societal costs of in terms of widespread debilitation and disability.

The influence of the financial power and motives of the two large for-profit corporations that dominate U.S. dialysis care cannot be overstated. For the most basic financial reasons, they have never placed emphasis on patient employment and rehabilitation in their models of patient care. At this point, there is not enough money in the current payment system policies for them to justify rebuilding the psychosocial services that are needed to encourage and support patient employment and rehabilitation. Presently, the only way to have these powerful corporations develop and implement well-dialyzor models of care is to offer them substantial financial incentives. Fortunately, this can be done quickly within the current payment system by making relatively minor change to existing policies, mainly tying extensions of the MSP-period to patient employment. This would also reduce Medicare costs.

Lastly, the increasing costs and environmental damage that result from hundreds of millions of dialysis treatments can no longer be ignored. A shift from entitlement to responsibility is needed. The end-stage renal disease program must become a renal rehabilitation program that stresses the importance of societal involvement. In exchange for a commitment to long-term dialysis care, patient groups should commit to patient rehabilitation programs that both provide benefits to their communities and offset the environmental impact of their treatments. By combining these responsibilities with the health benefits of patient rehabilitation, dialysis patient groups can establish themselves as leaders of chronic illness medical care policymaking.

Comments

[Zach]

What is meant by, "... minimize the environmental damage caused by their treatments."

[Gary Peterson]

I changed it to read "... offset the environmental impact of their treatments."

[Zach]

I guess I'm a bit thick headed (comes with 29 years on hemodialysis), but I still don't understand your reference to "environmental impact."

Are we to advocate for reuse?

[Gary Peterson]

I really don't want this thread to become a discussion for environmental issues. That will come later. However, to summarize, this work would involve both reducing and offsetting the carbon footprint of dialysis treatments, reducing landfill volumes, recycling, water conservation, electrical power grid conservation, alternative power generation, possibly urban forestry and gardening, and more.

[Denise Eilers]

And there are some examples out there. Stay tuned. I know I am!

[MooseMom]

I want to be that model. I want to be that "well dialyzor" that DOES exist (in people like Zach and Bill Peckham and Peter Laird). But I do recognize that for many patients, dialysis is the end of the road; there are too many co-morbidities at play for them to become suddenly truly "well", but dialysis shouldn't make them sicker.

I confess that I don't really understand what is meant by shifting from "entitlement" to "responsibility". I know that you, Gary, don't want this discussion to become about the environment, but this whole part of your argument is very fuzzy. What do you have in mind regarding making well-dialyzed patients become more socially responsible? I agree with all of your other points wholeheartedly, but the last bit...well, I'm confused. How do you envisage a patient rehabilitation program that provides benefits to the community and to the environment? Are you saying that a well-dialyzed patient should commit to volunteering and recycling?

[MooseMom]

Oh SNAP!! Looking at RenalWEB, there's that story about the dialysis patient advocate at a Davita Clinic in Tulsa. Now THAT's a way to "give back", to show societal benefit in being a well-dialyzed patient. Is that the type thing you had in mind? I'd LOVE to do something like that!!!

[Rich Berkowitz]

Gary and I have been talking almost daily on this subject for a couple of months. We have often differed on strategy, but not the basic premises. He is absolutely correct a well dialysis patient model of care that addresses larger societal concerns is needed. We disagree on some concepts, but generally are in agreement. I have to admit that it bothered me that additional incentives will be necessary for providers to want to rehabilitate patients, but he’s correct that there’s not enough money in the system for its accomplishment, especially considering the impact bundling and its corresponding lower reimbursements. Already we’re seeing providers cutting back on named pharmaceuticals and other specific ones.

I’ve been tossing around a chicken or egg question about what comes first — a well patient or rehabilitation. I remain in the camp that most patients are not getting enough dialysis and get more debilitated as time goes on making rehabilitation less likely. So I’m still a fervent believer for longer and more frequent dialysis, meaning home dialysis for more people. There’s a greater chance of habilitation, keeping people healthier as they begin their dialysis journeys. However, it’s true that the original intent of Congress when the Social Security Act first hit the books that rehabilitation was to be foremost. So in my own dilemma of the chicken and egg question, I’ve come to the conclusion a well patient is needed first.

So what’s needed to make rehabilitation a success? It’s clear to me that we must get more people to go home. But the fact is that over 90% of dialysis patients are still in-center. One thing needed is to have more centers open after 5:00pm. Dialysis centers must conform to workers schedules and not the other way around. With centers open in the evening it would be possible to have more frequent dialysis for some per the protocol of the FHN Study where daily was done for an average of 5.2 days per week. After that shift, centers could remain open for nocturnal dialysis, preferably every other day rather than three times per week as conventional hemodialysis should be.

One hope would be that the members of the frequent group could move home when they felt more comfortable, thus making slots available for others. Will this require more funding for providers other than typical reimbursements? Perhaps! But we already know that more frequent dialysis also brings the need for fewer meds and this translates into less cost in the age of bundling. By getting people off of disability and gainfully employed again (assuming jobs are available as the economy rebounds), the system can save a tremendous amount of money. In fact, many people are getting Medicare benefits because they are disabled by CKF. That would possibly mean they would regain employee health insurance and return to the world of private pay instead of Medicare.

To get a perspective on the data which indicates only 19% of dialysis centers remained open after 5:00pm, only 2% were employed through a vocational rehabilitation service and only 20% were employed, please see Table 20 of the Annual ESRD Consolidated Network Report for 2008!.

So where can extra money come from to handle additional expenses. We know it’s not going to come from the bottom lines of the for-profits. We also know it’s not going to come from Medicare or the government. Once again, Gary offers the only real solution, which is to shift funding from Medicare to the private insurance companies who pay more than Medicare. Providers have been trying to get the Medicare Secondary Payer (MSP) provision extended from its current 30 months before Medicare picks up responsibility for the majority of reimbursement. It’s almost guaranteed they will try again. Thus, more funds would be available for dialysis. But there will be a big fight to accomplish this as the insurance companies will object.

It’s time for patient organizations to step in and speak in one voice to represent their constituencies. Not to be necessarily adversaries to providers, but they must find a way to truly help return the ESRD program to its initial intent. They must help dialysis patients regain as much as possible the lives they had before their kidney failure and allow them to meet their own life goals. If that means insisting on strings attached to any increase in the MSP, then that’s what they must do. Of course, there are other issues which need to be tackled. Patient organizations must always put patients first. We need to depend upon ourselves. We need to be our own best advocate. No one knows better about dialysis than us.

Rich Berkowitz
NxStageUsers

[Denise Eilers]

We may be arguing semantics--"rehabilitation" vs. "well" patient. Aren't those terms somewhat synonymous? Falling back on a precise definitions, Webster defines rehabilitation as "fitness for living in normal conditons" and describes wellness as "in health." Hmmm...those seem similar to me.

What really matters is that the kidney community helps patients lead the lives they wish to live. That is highly individualistic.

I agree with Dr. Agar that the kidney community is fragmented. Why can't we put aside egos and individual agendas to look toward the common good?

[MooseMom]

An unwell patient isn't going to be able to work. First, the patient has to get well.

A patient has to have access to optimal dialysis to get well. Optimal dialysis costs more money than is available via Medicare at the moment. Insurance companies are big and powerful, but the big dialysis companies and the medical supply companies that feed them are big and powerful, too. We have one big industry vs another big industry with a lot of money at stake. Let them fight it out between the two of them and let the US taxpayer off the hook. Extend the MSP for infinity.

I really don't think anyone disputes the benefits of optimal dialysis, so I don't think that's where our fight should be. I really think it's all about money. We tend to be short-sighted as usual. A patient who is not getting enough dialysis will ultimately gobble up more resources as his heart fails, his arteries crumble, his bones disentegrate and his bloodstream is poisoned. THAT's where the big expense lies...the hospitalizations and all the extra bumph needed to treat the side effects of crap dialysis. We need to keep pointing out that the financial consequences of "adequate" dialysis are more costly than those incurred providing "optimal" dialysis.

[MooseMom]

PS..When I say "We tend to be shortsighted as usual", I mean we as a society.

[John Agar]

As I recognise that Gary does NOT want this thread to turn into an environmental discussion ... and fair enough too ... I will open up a thread in the next few days at the HDC site on Green Dialysis ... though if you look back through past threads at that site, you will find one (sadly largely ignored) from some time back.

Some may know that we were the 1st (anywhere) to publish in this area and have authored much of of the literature on the neglected areas of both water conservation in dialysis and, more recently, solar powering of dialysis. Our unit reclaims and recycles ~100,000 litres of reject water a week (we have been since 2004) and now solar powers our home training service.

I have presented on water recycling at the last 4 x ADC's and on our solar work at the most recent ADC in Phoenix with a special session on it at that meeting.

There is a discussion of Green Dialysis and environmental conservation in dialysis at my webite (www.nocturnaldialysis.org) and a not-very-uptodate bibliography of our publications. Google 'solar power dialysis' and this will bring up some of our solar work.

The Brits have an NHS department for Green Nephrology built on our earlier work at Barwon Health and have taken the area and its implementation to a whole new level. Andy Connor published his work on the carbon footprint of a dialysis unit in the January issue of HDI. More than 40 dialysis units across Britain now practice a range of green dialysis and green nephrology programs. These are described at the NHS 'Green Healthcare' website. The UK work can be accessed through Google using the key words Green Dialysis.

[John Agar]

NB ... the 'Thinking Green' thread at HDC was posted on July 20 2010.

[Gary Peterson]

In response to MooseMom about responsibility and rehabilitation:

I have come to believe that a “whole patient” approach is essential in CKD5 care and that especially for American patients, it must include employment or rehabilitation.

Without employment or rehabilitation as goals of dialysis care, I believe caregivers are actually harming many, if not most, American dialysis patients.

I believe clues have been staring us in the face for years. Many prominent nephrologists have told me that they consider a patient’s “will to live” or “reason to live” a significant factor in predicting their survival on dialysis. The U.S. patient survival rate has been stagnant or barely improving for decades. European dialysis patients enjoy better survival rates than U.S. patients, while Japanese patients enjoy even better survival rates than Europeans. The U.S. medical community tends to explain these differences away with co-morbidities, catheter usage, and compliance issues. However, if one accepts some importance or significance to a mind-body connection in medical care, I believe there are cultural attitudes and psychological forces at work that might explain why the U.S. performs so poorly.

This explanation requires some generalizations about the American, European, and Japanese cultures, but I believe they are necessary and essential. Briefly put, here they are:

I believe, in the U.S., we define our social worth primarily through our work. Unlike Japan, we do not have a culture that values and treasures its elders. Europeans, much more than Americans, emphasize “living well” more than their work life.

Consider these questions:

In Japan, dialysis patients are older than U.S. patients, yet they survive longer. Could it be that they benefit from attitudes of respect and support from their families and caregivers? Do these patients feel valued, even though they are elderly and not working? Does this cultural difference change interactions between caregivers and patients? Do these feelings translate in higher survival rates?

Could it be that Americans who are disabled by their dialysis care feel less valued by their families, friends, and society? Are caregivers’ attitudes different towards non-working patients? Is it likely that not working or not being involved in some enterprise significantly lowers American patients’ self-worth? Do these feelings translate into lower survival rates?

Could it be that European patients benefit from the societal attitudes that emphasize living well? Are European caregivers less judgmental than American caregivers about employment status?

I believe medical history will show that it was a major mistake in chronic dialysis care not to include employment and rehabilitation as essential goals for American patients. Someday we may see that simply focusing on biochemical markers subjected these patient to unnecessary stress, shame, and ultimately, harm.

Perhaps one of the more elegant ways to remedy much of what is wrong in dialysis care today is to require that large dialysis provider organizations employ dialysis patients. It would quickly educate co-workers as to what actions and environments reduce treatment and illness burdens. It would also provide the feedback, collaborations, and tensions that are necessary in a healthcare system that is always self-improving.

There are three areas where a natural fit appears to exist for dialysis patients to provide more services to fellow patients, their communities, and society:

• Kidney disease and diabetes education
  
• Patient care and mentoring/support of fellow patients
  
• The “greening” of dialysis care

It is also time for the patient organizations to strongly consider accepting environmental responsibilities for the medical care they receive. Among the supporting reasons and benefits:

• Joint projects for government, corporations, patient groups, and individual patients.
  
• Could be a legislative bridge for those with opposing political views, i.e. large corporations and progressive social activists
  
• Offsets or minimizes the carbon footprint of dialysis care
  
• Dialysis units typically send thousands of gallons of uncontaminated water down the drain every day
  
• Offers a give-back by patients to society for providing life-sustaining care
  
• Would make dialysis the first healthcare sector to take environment responsibility for the care it provides
  
• Create meaningful rehabilitation experiences for patients, i.e. growing and nurturing living things that sustain other life
  
• Provides a purposeful social participation, essential for successful dialysis care, for retirees
  
• Can meet a need in local communities for fresh produce, especially in inner city "food deserts"

[MooseMom]

I am intrigued by the notion of cultural attitudes influencing dialysis success rates. I think it is true that Americans tend to define themselves by their work, although the Japanese are legendary in their vociferous work habits. I lived in the UK for many years, and I frankly do not think the Brits place much emphasis on "living well", but then again, most Brits don't like to think of themselves as "European" if that means lumping themselves in with the French and the Germans. So I am not sure why British patients are better off than American dialyzors.

(Defining self-worth through your work is what started the mommy wars. While it may be true that work is the yardstick by which we measure such things, I'm not so sure it's a very good tool. It is divisive as long as we believe that one job is worth more than another, and THAT is a whole 'nuther topic.)

I do think, however, that American patients are perhaps shamed in their disability. There is this pervasive attitude in this country that attempts to shame anyone who is not seen to be "pulling their weight". And it goes beyond not merely pulling your weight; it also means that you are a leech. You are a burden. You are getting benefits that me and mine are not getting, and THAT'S NOT FAIR. This is a cultural attitude that is harmful to the psyche of any American with a chronic illness.

I agree wholeheartedly that rehabilitation should be the goal, and that could mean simply being able to have the life you have long worked for. If you are young and employed, rehabilitation would mean returning to work. If you are retired, it might mean being able to travel freely to visit your grandchildren or to take that trip around the world you had dreamed of all of your working life. I personally would jump at the chance to mentor a CKD patient and "give back" in that way, but we have to be careful that we don't somehow make dialyzors feel that they owe society anything. We never chose to get CKD, just as my next door neighbor never chose to get cancer. If my dialysis keeps me alive, you can say the same thing about his chemotherapy or his surgery. At what point do we stop making people feel like they have to "pay" for their treatment? Are sick people going always be in society's debt? That seems to perpetuate the cycle of illness and shame.

Gary, I understand what you are saying and don't entirely disagree, but I don't know if it is right or even practicable to make dialyzors "take responsibility" for their treatment. I don't want to have CKD. I don't WANT to start dialysis. I don't WANT ANY OF THIS AT ALL. I'm sure I'm not alone in feeling this way. To add "responsibility for my treatment" on top of everything else is...well, I'm not sure of the word. "Unfair", perhaps? Would you tell a cancer patient the same thing?

[Denise Eilers]

When I meet someone for the first time, their next question to me is invariably “...and what do you do?” I agree that our culture defines people by their employment. Even the media publishes a yearly list of the most respected professions. Is it any wonder that unemployed patients might be viewed as less valuable members of society and that depression is rampant?

However, employment is only one aspect of the larger issue of life goals. Those goals may include continuing education, volunteering in the community, pursuing leisure activities during retirement, or raising children. The end result is a feeling of self worth and fulfillment.

I also concur that other cultures have an entirely different outlook. Many societies place more emphasis on the accumulated wisdom of experience. They respect those persons as “sages” who can pass on their accrued knowledge to others (as in patient to patient mentoring??).

Any well or whole patient concept should also acknowledge that CKD5 impacts the entire family and affects every aspect of their lives on an ongoing basis including socialization and personal relationships.

A well patient concept should also encompass real shared decision making. In his book “Patient, Heal Thyself,” Robert Veach makes an analogy to the business world comparing the patient to the “managing partner” in directing his/her care. But the challenge is to provide the education necessary for patients to assume that role.

There's been quite a lot of discussion about rehabilitation vs a well patient concept. In the book “Biology of Belief” cellular biologist Bruce Lipton wrote, “When I provide a healthy environment for my cells, they thrive; when the environment was less than optimal, the cells faltered. When I adjusted the environment, those 'sick' cells revitalized." Couldn't that apply to the environment of center vs. home therapy?

Maybe that is a worthy goal: a revitalized patient! The question of how to best accomplish that still remains.

[MooseMom]

I am of an age where I don't care how people define my "value". I just don't care. I will not apologize for what I choose to do with my life. I shouldn't have to justify my existence, and I shouldn't have to "prove" that I am worth saving. Just because I am unfortunate enough to be stricken by a disease that is completely random doesn't mean that suddenly I have to become "worthy" by anybody's definition save my own. The more I think about it, the more I dislike this unspoken burden of somehow being required to reimburse society because I have an illness that I didn't ask for that is treated by a process, dialysis, whose cost is beyond my control.

I personally think that as much money and manpower should go toward research that will result in growing kidneys to replace damaged ones. Dialysis is costly on just about every level imaginable, and the sooner dialysis becomes ancient history, the better. In the meantime, I feel we should do a lot more to educate people about CKD to KEEP THEM OFF DIALYSIS IN THE FIRST PLACE. Better pre-dialysis care, particularly for those in more vulnerable populations (which tend to also be those populations who lack adequate insurance and, so, access to preventative care) might help in this regard. More and more people are ending up on dialysis; surely we can do something about this?

[MooseMom]

Ooooh, I sounded a bit snarky there...I don't know how to edit my post to make me sound a bit more reasoned.

Look, here's the thing...when the thought of having to go on dialysis first really hit home, I was terrified. When I sat down and really examined what was frightening me, I realized that it was DIALYSIS that scared me. My greatest fear was that dialysis would disable me. I think it is fair to say that in many, if not most, renal patients, the TREATMENT ITSELF is what causes disability. Dialysis should not in and of itself cause disability. It doesn't HAVE to! That's the most aggravating thing...dialysis doesn't HAVE to cause disability!!! People in America are ashamed of being disabled. It shouldn't be that way, but the truth is that having your value societally defined by your work is only one side of the equation. The other side of the equation is your ABILITY to work. If you are unemployed, that's bad enough, but people will understand, especially these days. But if you are unemployed BECAUSE you are DISABLED, then that's cause for shame. Take the disability out of dialysis, and dialyzors will have a fighting chance to "redeem themselves".

[Gary Peterson]

MooseMom,

You have really hit the nail on the head when you say, “The treatment itself is what causes the disability.” I feel that is the primary reason why dialysis care professionals would not accept standard in-center care for themselves and would seek longer and/or more frequent treatments.

In terms of my statements, I need to clarify between patient organizations and individual patients.

First and foremost, I completely agree that no good is accomplished by having an individual feel they need to justify their dialysis treatments. However, if dialysis care is going to stop being debilitating, patient organizations must justify additional dialysis therapy.

I know that many prominent nephrologists have little interest in patient employment or rehabilitation. It has never been a goal during their long careers and they show little enthusiasm for change. The few successful “well patients” that exist were lucky enough to meet or find those few nephrologists who believe otherwise. I believe that only patient organizations can effectively challenge the medical establishment to change their views and actions with any sense of urgency.

I do believe patient organizations do have responsibilities to act as representatives of groups of patients to society. They need to establish independent agendas that advance the patients' needs for optimal life outcomes. To do this, they need to provide the justifications for the additional dialysis treatment that is necessary for employment and rehabilitation. These groups need to be actively engaged in the preparing economic analyses, lobbying, and must challenge the corporate and medical establishments.

A major problem, of course, is that many of these patient organizations can only exist with funding from corporate sources. Unfortunately, these corporations are fine-tuned, profit producing organizations --- that do not emphasize patient employment or rehabilitation Too often, patient organizations become “de facto” branches of the corporations.

How bad is it?

Tomorrow night, the American Association of Kidney Patients (AAKP) is hosting a dinner honoring the medical directors of the two largest for-profit dialysis providers at the Renal Physicians Association meeting in Washington, DC.

After the ProPublica articles on shortcomings in dialysis care were published last fall, no patient organization spoke out for the patients.

Finally, concerning the different "cultures" of care, U.S. patients are often shocked to discover that most dialysis care in Europe and Japan is provided solely by nurses with degrees. If we were to make employment and rehabilitation goals of dialysis therapy in the U.S. , I believe we would see far more RNs working in our dialysis centers. Today, the U.S. for-profit centers rely heavily on low-paid patient-care technicians, many of whom are repeatedly failing their certification exams, yet continue to dialyze patients.

[MooseMom]

Thanks for the clarification, Gary.

I don't mean to make myself the center of the discussion, but at this point, I have only my own experience to guide me. While my neph has provided me with good pre-D care, he has NOT been instrumental in educating me. A patient will not receive optimal dialysis if he doesn't know it exists. If his neph doesn't tell him, his chances of getting it are slim. At what point do we reach a newly diagnosed CKD patient so that he can have the information available to make a good choice for himself? I believe this is what Peter/hemodoc calls "informed consent". How to we reach patients whose nephs are uneducated?

Why do you think that nephs aren't interested in a "rehabilitated" patient? That's staggering! Don't physicans want their patients to "get well"? If a neph can't cure CKD, surely the goal would be to assist the patient in getting back a life worth living. But if what you say is true, I guess I'm misguided.

It's true that PCTs in this country are low-paid dogsbodies. And that means that PCTs are not highly valued, which means that they won't feel highly valued, which will often mean that they can't be arsed to provide the best of care. I saw that a lot in my mother's clinic while she was alive. Another reason to dialyze at home.

I can now see why "patient organizations" may not always work for the benefit of actual patients. How disappointing that so many of them are linked to the big D providers. But if the big providers can provide optimal dialysis, then that's OK. The problem is that optimal dialysis seems to be available only at a patients own home. I'm preaching to the choir here, I know...