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March 11, 2009

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Zach

Bravo!

Miriam Lippel Blum

Great work! I sent it to everyone I know.

richard

Not being American but can see very clearly how this petition affects Canadian dialysis patients as well

Carol Minick

I have been a dialysis nurse for 25 years & I can say with no hesitation that very few patients would come every other day regardless of the research findings. I work in an inner city dialysis center with 24 beds/3 shifts a day. We see an average of 150-180 skipped treatments a month.

Also, being closed Sunday makes in center hemodialysis an attractive position in an oft times psychologically & physically demanding job.

Bill Peckham

Carol, it may be that people will choose (rather than be compelled by CMS) to continue with a bare minimum dose of dialysis but what is CMS's rationale for requiring two days without dialysis. Why should CMS say no to better dialysis on behalf of adults with CKD5? They're adults, they can decide for themselves once CMS steps out of the way.

Just maybe if dialysis wasn't quite so violent your charges wouldn't skip so often. Just maybe if people felt better during and after dialysis they would come to see it for what it could be rather than what it is to often today.

I'm not sure why the dialysis unit needs to be closed for you to take a day off.

Carol Minick

When it was decided that no American woud be refused dialysis for any reason, no one had an idea of the financial burden this would become. I doubt I will see every other day dialysis approved by CMS in my life time.

Also 45% of CKD5 are diabetics. As a nephrologist I work with says "a non-compliant diabetic leads to a non compliant dialysis patient'. Same for those who knew they had HTN & didn't take their meds. It is hard to convince these folks to follow direction, even if it's for their own good. It is not that I'm uncaring, far from it (otherwise I would not bother to keep up with the latest CKD info), but I call it as I see it. I will ask some of my patients what they think about it being sure to include the above info.

Miriam Lippel Blum

Re: Carol's last post
I'm glad he's not my nephrologist and I feel sorry for his patients.

Carol Minick

Re: Mirim's posting

Don't feel sorry for the MD's patients. He is an excellent nephrologist, one I would choose for myself or those close to me. He is very scientifically minded and is merely stating what he has observed in his practice. Patients that shoulder no responsibility (non-compliance) have poor outcomes.

Zach

"Patients that shoulder no responsibility (non-compliance) have poor outcomes."

Which gets us back to Bill's idea of paying for patient compliance --by way of reduced Medicare premiums.

Peter Laird, MD

Carol, pardon me for being blunt, but I am sick and tired of American nephrologists blaming bad outcomes on noncompliant patients. Optimal dialysis overcomes even the most noncompliant patients. Once again, another example of America offering excuses while the other countries offer optimal results.

The Antelope Valley has one of the highest rates of child abuse and methamphetamine use in the entire nation as well as a large Medicare, Medicaid population, yet my nephrologist was able to reduce annual mortality from about 20% six years ago when he first opened his unit to 7% for 2008 despite many noncompliant diabetic patients. It is time to stop blaming diabetics and noncompliance for poor outcomes, nephrologists are accountable for the missuse of the other gift of life. More is better.

The time has come to stop looking for excuses of America's poor performance. I have seen personally the results of a dedicated nephrologist and two companies coming together to provide excellent care. No excuses at my unit, just better results each and every year no matter how many noncompliant diabetes are gathered in our unit. It is time to get away from excuses to results. Just my opinion on this issue.

Miriam Lippel Blum

The tone of your comments is contemptuous and trying to hide behind a partial truth comes across as immature and insincere. Your statement suggests that dialysis patients should be blamed for their condition. This may apply to some but certainly not all.

You claim to be compassionate but your statements show that you are not. At best, you are patronizing and arrogant.

As to your statement about patients who "shoulder no responsibility," I cannot help but wonder if this is a tautology because you already assume that most dialysis patients have caused their own condition. Further, it has been my experience that it is often short-sighted and narrow-minded dialysis nurses who refuse to accept responsibility for their contribution to the poor state of U.S. hemodialysis.

If you are not actively encouraging your patients to take advantage of the best advances now being seen in the scientific literature then you are complicit in the unnecessarily high morbidity and mortality rate.

I assume you wouldn't deign to sign the petition since you think it might affect your days off. You've made your priorities clear.

roberta mikles

When the term, 'non-compliant' patient is used, which I believe is used all too often without cause, one should remember the following:
(1) Why is the patient being labeled as non-compliant?
(2) What is the underlying 'real' cause of the patient being noncompliant? Can the reasons/causes be adjusted so that the patient is able to be compliant?
(3) Have staff, including the entire team, investigated further to make a true determination of causes and reasons for noncompliance e.g. including the patient in the treatment care planning meeting (in person).
Roberta Mikles

richard

"psychologically & physically demanding job"

geeez that sounds like dialysis to me and to think no vacations...

richard

"noncompliance" is a cop-out...I look at it as the "Team" bus getting a flat tire and nobody getting out to fix it

Bill Peckham

I welcome Carol's comments because we need her on our side and if she hadn't commented we wouldn't really understand the objections. I think those who support the petition should be welcoming of skeptics and try hard to really understand what the skeptic is saying.

I would like for people with 25 years caring for those with CKD5 to be listened to and taken seriously on DSEN. I would like to try and encourage them to share their thoughts without having to worry that their comments will be parsed and combed for a fight.

Carol is not our opponent in this, she is a potential ally. My last sentence was a bit snarky and I may have set a bad tone. Let's all try to encourage people who are interested but skeptical. If we can't bring a 25 year veteran on board we're not going to have much luck with the skeptics in Congress and at CMS.

Rich Berkowitz

Oh Bill, so true, and I don't doubt Carol's sincerity. It's not that the other posts didn't have a ring ot truth as well, but prehaps could have been said more gently. So let me see if I can walk this fine line!

I see non-compliance and poor outcomes as more of a chicken and egg question. Which came first, non-compliance or poor outcomes? And, in Carol's case, it might not just be medical.

Carol, I believe you're in a particularly difficult situation since you're involved in an inner city center. Many of your dialyzors may already have two strikes against them and the pitcher is throwing nothing but heat. How devastating it must be to perhaps having diabetes and already living a life with many socioeconomic obstacles that one muct now also have to deal with dialysis! I could only imagine. One of the most important aspects of attaining better outcomes, let alone optimal, is having a positive attitude when faced with this new obstacle that life has thrown your way. At first, dialysis isn't the kind of life anybody has expected, and now it comes with the other hardships of inner city living!

What I have believed for a long time is that the dialysis team is missing a member — the psychologist. Now wouldn't that cause a wrinkle in the composite rate? But seriously, it's time to deal with CKD holistically. We're all aware depression is a side effect of CKD. Whose responsibility is it of the current team members? The closest we have is the sooial worker — not really. Is it the nurse? It's not her area of expertise, although she may be closest to the situation. Definitely not the tech. Maybe the neph — I don't even want to go there. So it comes down to the dialyzor — any self-help books out there? What we need is a way to deal with the whole person.

I also see how non-compliance can be a cry for help — help that's not available. Is the non-compliance a death wish? Is it the last desperate act of a difficult life? Is it really a type of suicide, albeit not as overt as a putting a gun to one's head?

Carol, you have brought up very real issues, and I wouldn't want to be in your shoes. Your 25 years of service isn't because you just want a job. I believe you're deeply committed to helping your dialyzors. And I know how difficult it is to answer that chicken and egg question. It may determine whether a dialyzor lives or dies. To attain optimal dialysis, the first and very real hurdle to cross is having the will and hope to go on. Let's not put that much pressure on Carol. She can't be the dialyzor's psychologist too. She's only human!

Peter Laird, MD

Dear Bill and Rich, thank you for your insightful advice on these issues. Yes, we can still remain forceful but polite in our responses and we should strive to do so. However, there remains a collective anger over the suffering that all of us that have been with the standard care for years suffering much from "usual" symptoms of dialysis. Too long, many in the industry have blamed the patient for the bad outcomes, the intradialytic hypotension, the nausea, the vomiting, the fatigue if "we would only take better care of ourselves." But in many ways, the need for psychiatrists and the incidence of depression is lack of dosage related.

Usual post dialysis symptoms are actually signs of undertreatment and not the treatment itself which disappear when the dosage increases. And through all of this, America continues to offer patient centered excuses for why we do so badly I truly doubt no one can dispute.

Yes, there are times for polite discussion, but is there not also times where outright confrontation of current practices is called for as well. Where the line between the two is drawn is certainly a subject of debate. Where there is no debate is in the lack of compassion that we often see from many in the dialysis industry. Perhaps that is their defense mechanism to cope with the horrific nature of usual care dialysis. I speak this in short to say, perhaps Rich, it is not only the patients that need a psychiatrist, but the also some of the staff who have lost their compassion in the pursuit of objectivity that all of us medical providers we are TRAINED to acquire. It is an industry in need of an overhaul.

Perhaps in all things, simply having a dialogue is the most important part, and to do that, yes, we do have to maintain a sense of civility, on both sides, no matter the underlying anger over our current situation.

Rich Berkowitz

Peter, how right you are, perhaps the staff should have access to a psychiatrist as well (but remember that in today's medical environment a psychiatrist main function is to push pills). However, let me raise a question. Is it a lack of compassion or lack of hope that some staff members acquire?

Zach

Once again, it may be the lack of high expectations.

K-12 education has that problem, especially in urban America.

Carol Minick

Let me say that I am amazed by & admire the patient who shows up for every scheduled treatment, stays the fully precribed time & follows that awful diet. I know from medical problems of my own that I would certainly try things my own way first. I am also aware that dialysis patients begin to think that feeling rotten is normal for them & find out differently if they get transplanted.

Non-compliance in my eyes is the patient who does nothing suggested, blames the consequences on "the machine" the staff, their family, life's circumstances, etc. It is not the majority of my patients. It is my job to explain renal failure & dialysis, medication & diet teaching, and keep abreast of the latest news in CKD. Not all patients are receptive & I've learned when to stop beating my head against a wall.

My husband told me I should have left out the Sundays off comment, but it's the truth. It is hard to keep good dialysis staff. The job's not for everybody & there is ususally a high turnover rate. We need to look at how to keep people on board. Sometimes Sundays off is a good start.

My favorite thing to do at work is make my patients laugh because I don't see enough of that in dialysis units-maybe that's my arrogance.

I have been having some interesting conversations about every other day dialysis with my patients. "Transportation would be a nightmare" Ms M. said. I'll get back to you with more...

Anna Bennett

Thank you Carol for your comments and insight. This is a Herculean task that has been taken on, and in today's climate, advocating for the best possible health care is like swimming upstream in a flash flood. The more medical professionals that step back and look at our perspective, even if they don't agree - just to respect us enough to enter into conversation,the more we feel we are being heard.

To give up on patients is a natural response to an overstressed, understaffed medical environment. Medical staff are people too, and the stress of the job can be overwhelming, you are right, sometimes, you have to just stop bashing your head against the wall. That is why we the patients are trying to educate and empower our peers to let them know that they can feel better, all is not lost and life can be regained with a higher dose of dialysis. Now, we just need to get someone to pay for it.

Often, when people are depressed and suffering, they lash out at those who appear to have all of the power, the paid professionals, because it would be overwhelming to face the truth - some of the discomfort is due to poor choices. Non-compliance could be denial, depression or lack of education, I am just saddened that it is so pervasive in today's dialysis incenter 3x a week enviornment.

Optimal health when you have CKD5 is a team effort, and we are glad to have you here.

Peter Laird, MD

Dear Carol, when I was considering what specialty to enter after medical school, I remember one podiatrist who offered a compelling argument for his profession. He said he had instant patient gratification for a someone that would walk into their office with painful feet and walk out immediately improved from his treatment. After years of practice, he did indeed appear to be satisfied with his choice of career and enjoyed great patient appreciation.

Unfortunately, dialysis staff are under payed and overworked compared to many similar health related fields. In addition, with 24% of patients dying every year, painful needle insertions, patients with nausea, vomiting and hypotension related to usual dialysis portends for very stressful work situations.

Imagine taking care of patients who are happy, feel well, and are energetic and active. I suspect that many in the dialysis industry would have a much greater appreciation for the work they are doing if they could see those results before them. Certainly, chronic renal disease is always going to have adverse events no matter how optimal the care that is provided. Yet, there is the possibility to gain great satisfaction in running home based programs and watching all of the labs normalize and people have their lives back again. Simply implementing EODD would also improve patient outcomes to such a degree that there would also be great professional satisfaction.

Perhaps the issue of having Sunday off is not really the issue. So many of the technicians that work MWF at my unit leave by 7pm when my shift is over and then get ready to go home and open at 2am for their other job on TTS. I believe that is the great debate. Why are the techs paid such a low wage that they must work for up to 72 hours a week to pay their bills? If pay was enough that they could do 3 or 4 shifts a week instead of 6 and still work more hours than most Americans do then the issue of Sundays off would not be an issue. The entire system needs overhaul, not just patient schedules.

That is the silent issue of reading between the lines on wanting Sunday off. Europe has much higher pay and staff support than we have here in America. An additional issue is the growing epidemic of renal disease in America. Simply put, we will have to send people home on their own machines to meet this new demand.

Optimal dialysis will be of great benefit to those such as yourself who work in this industry.

Let me end with one encounter from my travels last summer. The lead nurse where I spent over a month was brought to tears when my wife and I gave her a thank you card on our last day. She told my wife that no one had ever giving her a thank you card in over 25 years as an accomplished dialysis nurse. If this is common then no wonder we have so many grumpy patients and grumpy dialysis personnel. Patients do have a responsibility to appreciate those that have dedicated their lives to our care. In this, yes it is a two way street.

God bless,

Peter

Carol Minick

Hey! What's the latest going on with increasing dilaysis time. I've been busy getting my parents settled in a new place (a topic for a different website). Just like they tell me at work-"Carol, when you're not here it's awfully quiet". Discussion stopped when I couldn't get to this site. It seems some of you needed to vent & found someone to listen. Sorry, I will try to check in more often. I'll speak my mind, but I'm always willing to listen. In my previous hospital based unit we tried the psychiatrist thing. A hospital staff psychiatrist came once a week & we had an open discussion about what was on our mind or something we were having trouble coping with.- We loved it!(again-someone to listen). Our sessions became quite animated & sometimes heated. Cross taalking would get out of control as every wanted to vent. I think we overwhelmed him. He decided he couldn't fit us in his schedule anymore.

Enjoy the summer!
Carol

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