Thirty years ago, I helped arrange an outpatient dialysis program on a remote Indian reservation.

Tell you the truth, the hospital was substandard, the staffing was short, and the administration pressured the docs not to transfer patients out to better facilities because our “contract health” funds were limited.

But the tribe saw dialysis, which could be arranged through the local University hospital and funded by Medicare (and not the cash strapped IHS), as a priority. You see, like many tribes, we had many people dying of renal failure due to diabetes or collagen disease (e.g. Lupus). Since many of the elderly didn’t speak English, some of them were reluctant to travel 100 miles three times a week to dialyze in a “white” hospital where no one spoke their language, and no one understood their culture…

Hence the tribe’s wishes to get a program started.

Nowadays, many of the IHS (Indian Health Service) hospitals have close liasons with the local dialysis units, or even have “outpatient” type dialysis units in their annex, where the patients can dialyze under the eye of a trained nurse.

Yes, some “younger” patients don’t dialyze: they get tranplants. And a few, mainly younger patients, chose to do outpatient peritoneal dialysis, which can be done with less interference with their daily lives.

So the average age in our dialysis patients tended to be in their 70’s, but many dialyzed for several years: few were actually “Terminal”.

Not everyone chose to get dialysis: Some patients preferred medical treatment, and a few developed other complications suggesting they were at the final stage of their lives, so we discouraged starting dialysis.

There were even a few patients developed other severe medical problems and chose to stop dialysis, so we gave them paliative care.

However, I can only think of one patient who we dialyzed who I would have recommended that she not start dialysis because of her other medical complications. Yet even there, she was intelligent and insisted that she still had a road to travel before she died. She was a brave lady.

The sad part of diabetes is that often everything starts to go slowly, so you end up with a heart attack, blindness, a stroke, losing your foot, you easily get septic from minor infections, etc. There is often a stage where the patient’s entire body is failing, and you have to encourage the patient (or more likely his or her family) that treatment isn’t prolonging life, it’s only prolonging dying, and therefore ethically permissable to stop this extraordinary treatment.

However, many patients go on as long as they feel well.

I’ve had quite a few patients who insist they want to stop dialysis because they feel lousy, but then they get a dialysis treatment and promptly change their mind. Why? the salt balance of the body was out of whack, and once the electrolyte imbalance that made them depressed was corrected, and they felt better and decided to live awhile longer.

Ah, but the NYTimes sees such people as wasting your tax dollars.

“…But the law has had unintended consequences, kidney experts say. It was meant to keep young and middle-aged people alive and productive. Instead, many of the patients who take advantage of the law are old and have other medical problems, often suffering through dialysis as a replacement for their failed kidneys but not living long because the other chronic diseases kill them…”

yeah. Save money by killing off those with “comorbid” conditions such as diabetes, acute nephritis and collagen diseases. That will eliminate most of those we dialyze, since the younger and healthier patients tend to get renal transplants.

The best summary of their true aim is this quote:

One idea, promoted by leading specialists, is to change the way doctors refer to the decision to forgo dialysis. Instead of saying that a patient is withdrawing from dialysis or agreeing not to start it, these specialists say the patient has chosen “medical management without dialysis.”

Who are we quoting here, a specialist who treats these patient every day?

No, someone whose job is to cut costs:

“That is the preferred term,” said Nancy Armistead, executive director of the Mid-Atlantic Renal Coalition, a Medicare contractor that collects data and patient grievances.

Yup. she’s a Medicare contractor, not a doc.

This is Orwellian language, because the dirty little secret is that although you can often prolong the life of a person with poor renal function, most of those on dialysis don’t have much kidney function left. So when you stop it, they die.

True, it’s not as painful a death as terminal cancer, but promoting it as the same thing to patients who might live months or years on dialysis is not the same thing….

The phrase,(i.e. “medical management without dialysis”) she says, “acknowledges that death is imminent,” but it also sends an important message: “We are not just sending people home to die. We are offering palliative care.”

No, you are talking about sending people home to die.

Some of them are dying, and sending them home to die is appropriate.

But if you read the jist of the NYTimes article, it is complaining about dialysis for the “elderly” who could live months or years on dialysis, not those with terminal disease.

Then there is this quote:

A committee of the Renal Physicians Association recently formulated guidelines to use in deciding when dialysis is appropriate. It provides questions that doctors should ask themselves before suggesting the treatment. One is the “surprise” question: Would I be surprised if this patient is dead within a year?

Yes, because all docs take Fortune Telling 101 in medical school. And of course there is that problem of a “self fulfilling prophecy”, where the idea the person is going to die changes the way you treat them, so they die faster of treatable disease.But I must admit that I’ve never heard of “Renal Physicians Association”.A quick look at their website reveals an ad for a book on “Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd edition”, and lots of links on coding of treatment (coding means how to fill out forms to bill)

Welcome to RPA

RPA is a national medical specialty association that represents and serves the interests of nephrology practitioners in their pursuit and delivery of quality renal care.
LEARN
# Communication skills to improve kidney patient safety and quality care.
# The most common causes of cardiovascular death in dialysis.
# How to approach end-of-life issues.
# …and so much more.
Discuss issues affecting nephrology practice and quality patient care:
# Impact of State Health Information Exchanges on nephrology practice
# Effects of Medicaid provisions of the Affordable Care Act
# Collaboration with carriers on development of coverage decisions

They also have pages of “guidelines” to tell docs how to practice medicine, code to get payment, etc.

And who funds them? Well, a list of “corporate patrons” include a bunch of drug companies and “for profit” corporations involved in health care.

Well, that makes me feel better (not).

In other words, this is not a patient/physician advocacy group (e.g. the National Kidney Foundation or the American Society of Nephrology). It is a site that promotes “scientific medical guidelines” and tries to tell you how to treat people in a cost effective way.

That sounds good, until you realize that treating the old, the chronically ill, and the handicapped is not “cost effective”.  Here’s another quote from the NYTimes article:

When Congress established the entitlement to pay for kidney patients in October 1972, dialysis and transplants were new procedures that were not covered by health insurance. There were horrifying stories — rich people got dialysis and lived while poor people died.

It also was expected at that time that fewer than 40 patients per million would need dialysis, and that most of those patients would be healthy — except for their failed kidneys — and under age 54.

Now more than 400 people per million start dialysis each year. More than a third of the patients are 65 or older, and they account for about 42 percent of the costs.

Imagine that. Wasting money treating old fogies instead of young healthy people.

Sounds like the article is trying to persuade you that those over 65 shouldn’t be dialyzed because it costs too much.

However, I have to admit, if you bother to read the entire NYTimes article to the end, they do quote two patients who preferred to dialyze than to die.  Here is one interview:

An 84-year-old man being treated at a clinic in Elkins, W.Va., run by West Virginia University has been counseled against dialysis. He has high blood pressure and severe congestive heart failure, a condition as lethal as terminal cancer. His heart problems make it hard for him to breathe, and he is often in the hospital. In a telephone interview, the man said he saw friends suffer on dialysis and always thought he would refuse it. But he is getting ready to start anyway. The man, whose name is being withheld to protect his privacy, says he changed his mind after he “sat and thought about how good life is.”

“What choice do you really have?” he asked.

Well, if you read the “experts” in this article, he is supposed to chose to save taxpayer money and just die. And they are busy devising “guidelines” to do just that, and with Obamacare, we just might not have any choice in the matter.

But to a health care professional,  the dirty little secret is that the symptoms given to justify not dialyzing this man are actually the symptoms of renal failure. When your kidneys don’t work well, your blood pressure goes up and your lungs fill with fluid (“congestive heart failure”).

And the dirty little secret is that these two medical problems are not reasons not to dialyze, but the very reason he needs dialysis: since these symptoms will greatly improve on dialysis.

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Nancy Reyes is a retired physician living in the rural Philippines. She blogs at Hey Doc Xanga Blog.

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