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Read the Leaked P.R. Plan to Spin Our Dialysis Investigation

The umbrella group Kidney Care Partners (KCP), an advocacy and lobbying organization for dialysis providers, patient groups, drug companies and others, drew up a plan to respond to our investigation into dialysis care.

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Update (2:39 p.m.): Kidney Care Partners released an official statement.

The umbrella group Kidney Care Partners (KCP), an advocacy and lobbying organization for dialysis providers, patient groups, drug companies and others, drew up a plan to respond to our investigation into dialysis care. We obtained a leaked copy that you can read below. (We have tried to reach the group's communications counsel for comment but have not yet received a response.)

 

 

Our Planned Response:

The Message

The attached general talking points have been assembled based on what we assume will be in the ProPublica story on Tuesday. Our talking points focus on communicating four key messages:

  • Quality: Quality is very high and on an upward trajectory in the U.S., and the kidney care community is committed to continuing those positive quality trends.
  • Patient Education and Early Detection: The kidney community has been a leader in its efforts to educate patients about disease symptoms and effective disease management.
  • Care in the U.S. vs. Other Countries: In a worldwide view of kidney care, the U.S. is second in kidney transplantation rates per million population. While excelling in this key area, the U.S. continues to focus on improving in other areas.
  • Payment Issues: The kidney care community has worked with Congress to improve and strengthen the integrity of the Medicare benefit to ensure patient access and sustained quality improvements. A key improvement has been the inclusion of a value-based purchasing program and an annual cost of living adjustment.

Points to support these basic messages are provided in the attached document. Because many of these points may be left out of the ProPublica story, we believe it is important for us to reinforce the facts, if asked to react to the content of these stories.

The Process

Schmidt Public Affairs has been in close contact with the reporter and has provided materials and information (as have numerous other KCP members) in an effort to round out the story and ensure that a fair and balanced perspective of the kidney community is reported. Despite our collective efforts, we do not anticipate a balanced presentation, and we therefore feel it’s essential to create the "machinery" necessary to orchestrate an aggressive and prompt community-wide response. Key steps in our plan include the following:

  • Preparation:
    • Distribute story background and preliminary talking points on to all KCP members and lobbyists to ensure they are aware of the story and are prepared to respond to it, if necessary. We do not suggest that either members or lobbyists reach out to government officials or others in advance of the story’s release. (Patton Boggs will determine who among our allies should be contacted and assess content of article to set an action plan for outreach.) We do not want to call unnecessary attention to the story or give it “legs” in any way.
    • Distribute the story as soon as it is available online to all KCP members.
  • Immediate Post-publication Activities:
    • Post a KCP response on the ProPublica website and the KCP website immediately upon release of the story. Our message will be brief and will mirror the attached talking points in an effort to put forward an immediate positive statement containing facts not likely highlighted in the story.
    • Provide KCP statement (and any KCP member statements) as well as talking points to legislative counsel for proactive or reactive use (defer to lobbyists.)
    • Trigger postings from all Operations Committee member organizations and other KCP Board members responding to the story, giving direction as to how to post responses, with key message points as guides. Because we want to rebut as many of the allegations contained in the story as possible, we ask that constituency groups within KCP take the lead in focusing their responses on specific issues:
      • i. Physician groups and individual providers focusing on quality issues
      • ii. Patient and nursing groups focusing on patient education and payment issues
      • iii. All other members sending general responses consistent with KCP talking points
    • Prepare a more detailed response within 24 hours that is sent to the ProPublica editors and to Robin Fields. This detailed response will be posted to the KCP website as well. In preparing it, we will work with a small KCP subgroup of the Operations Committee.
    • Determine whether organized outreach to Capitol Hill is warranted and, if so, determine communication content and vehicle.
    • Track national, regional, policy/trade news outlets and social media to determine whether story will get traction through other media outlets.
  • Longer Term Post-publication Activities:
    • Begin process again in preparation for second, third and future stories.

PRELIMINARY/DRAFT TALKING POINTS

The ATLANTIC /ProPublica Story On Dialysis

Message 1: Quality of patient care is high and has improved measurably in the United States, and the kidney care community is committed to continued quality improvement.

  • Medicare’s end stage renal disease program is one of our nation’s greatest health care success stories, ensuring the delivery of life-saving care to nearly 400,000 patients with kidney failure every year, and doing so with unparalleled transparency and demonstrably high quality of care.
  • Despite positive quality trends in many areas, the community recognizes the need to continually improve. One area the community and other stakeholders are working on is improving mortality for patients in the first year of dialysis.
  • The kidney community has been deeply engaged in a variety of quality improvement initiatives. Activities have ranged from establishing the Kidney Care Quality Alliance to develop quality measures, which have been endorsed by the National Quality Forum, to launching a major initiative to reduce mortality in first-year dialysis patients by 20 percent by the end of 2012 (PEAK).
  • Government data clearly show that quality improvement trends are on the rise and have been for more than a decade. In fact, since 2002, providers have sustained or improved quality in 9 of 11 quality measures tracked by CMS, such as:
    • Some measures that have improved include hemoglobin levels, Kt/v, phosphorous, and calcium.
    • Outcomes have improved in universally accepted clinical process measures, such as:
      • Infectious disease is the second most common cause of death among ESRD patients.
      • Vaccinations of ESRD patients to avoid infectious disease have increased dramatically in recent years. According to 2009 USRDS data, vaccination rates increased 58 percent between 1996 and 2008.
  • AV Fistula use increased 99 percent between 1998 and 2008. Fistulas are the safest way to get access to the bloodstream, with patients experiencing lower rates of mortality, infection and fewer hospitalizations. Fistulas are a primary area of emphasis for CMS and the kidney community for significantly improving outcomes, spearheaded by the Fistula First Breakthrough Initiative which has resulted in significant improvement.
  • Facilities and providers report quality data routinely and will report even more quality data in the months ahead.

Message 2: The kidney community has been a leader in its efforts to educate patients about disease symptoms and effective disease management.

  • The kidney community has been a leading advocate for private and public programs that address early detection, education, and disease management for those suffering from kidney disease and kidney failure.
  • In 2007, Congress enacted into law provisions strongly supported by KCP that fund public and patient education initiatives to increase awareness about chronic kidney disease (CKD) and to help Stage IV CKD patients learn self-management skills that help prevent further disease progression control their CKD
  • The Medicare Improvements for Patients and Providers Act (MIPPA) establishes coverage for 6 educational sessions for Medicare beneficiaries with Stage IV CKD, the precursor to kidney failure, and establishes pilot projects to:
    • Increase awareness regarding CKD, focusing on prevention
    • Increase screening for the disease, focusing on Medicare beneficiaries at-risk of CKD
    • Enhance surveillance systems to better assess the prevalence and incidence of CKD
  • Different organizations within the kidney community offer a myriad of screening and educational programs.

Message 3: In a worldwide view of kidney care, the U.S. is second in kidney transplantation rates per million population. While excelling in this key area, the U.S. continues to focus on improving in other areas.

  • The U.S. is a leader in kidney transplantation rates. In 2007, the U.S. reported transplant rates of 58.1 percent per million population.
  • While excelling in the area of transplants, U.S. providers continue to focus on improving in the following areas: early detection of kidney disease, use of fistulas, and improved rates of survival. Factors that should be taken into consideration when making international comparisons include the following:
    • More expanded health care coverage in other industrialized nations leads to early detection of kidney disease, more frequent access to medical professionals, which can include more preventative, interventional and specialty care.
  • In the U.S., 40 percent of patients who are diagnosed with kidney failure have never visited a nephrologist prior to needing dialysis, and because of this fact, more patients come to dialysis with catheters.
  • 82 percent of dialysis patients in the U.S. start dialysis using a catheter. While the use of fistulas is growing, more attention needs to focus on fistula insertion as a means of producing positive clinical outcomes.
  • Until recently, the Medicare program has included disincentives for surgeons to insert fistulas. By increasing awareness through the “Fistula First” program and increasing payments for surgeons for the fistula procedure, the use of fistulas is also increasing.
  • Patient demographics play a significant role in clinical outcomes. The typical dialysis patient in the U.S. has more medical and co-morbid conditions than patients in other countries. These conditions include heart disease, high blood pressure, obesity, and diabetes, complicated by poor diet and nutrition, than in many other industrialized nations.

Message 4: There is a direct link between quality and economic stability in health care. And for that reason, KCP has led efforts to improve and strengthen the Medicare benefit through the creation of a value-based purchasing program and an annual cost-of-living adjustment.

  • Starting in 2012, Medicare will link payment to performance in kidney care. Dialysis providers who fail to meet government-established quality benchmarks will be penalized with a Medicare funding cut of up to 2 percent. Dialysis providers are the first of any health care sector to operate under a true value-based purchasing model.
  • Dialysis providers have been improving quality outcomes (see Point 2 for details) despite very thin operating margins. According to the Medicare Payment Advisory Commission (MedPAC), dialysis provider margins in 2008 were 2.5 percent, much lower than most other sectors of healthcare.
  • According to MedPAC, 25 percent of dialysis providers have margins at or below negative(-) 5.5 percent.
  • After decades of kidney community advocacy, Congress mandated that Medicare provide an annual payment adjustment to reflect cost increases associated with delivering quality care, which is now going into effect. Dialysis providers had been the only health care providers who did not receive such an update

I love love love it when original documents aimed at spin control get posted. Great work.

Does not question the veracity of your piece.  The bullet points are fine and dandy, are all true, etc., but the bottom line is, your report is the noose.  They are simply asking for a longer rope with their response.

Good job.

Love you guys. Keep it up.

I will admit right at the top that I don’t know the particulars of this story, either side, and can’t speak to the merits either of the investigative reporting or its target. But it’s naive to think that an organization under fire—corporation, not-for-profit, government agency, whatever—would not prepare for what it knows will be a negative story. Why shouldn’t they prepare for the fallout? It’s all too easy to make that appear sinister and manipulative, when it’s just sound communications strategy. Your shopping list could look sinister if turned into a public spectacle.

Aree with Bill S., although fair enough, the document was posted here wihtout any comments as well. So a neutral, leaker communications briefing, posted without comment. Much too learn for people who do not work in comms (yes - this is what a comms briefing looks like), but fairly unexciting otherwise I’d say.

KCP is just a corporate front organization cobbled together to blow smoke on behalf of the for-profit segment of the ESRD industry.  To drill much deeper into this you need to understand the real role of the ESRD Networks, pharmaceutical giant Amgen and its long-term relationship with the National Kidney Foundation, and the worst for-profit company providing ESRD in America, DaVita, based in Torrence, California.  Good luck.  You are at the tip of an iceberg.  You need to speak to Robert Wolf at the University of Michigan regarding ESRD data, Merrill Goozner regarding Amgen and Epogen, and anyone in the DHHS IG’s office who is willing to talk to you, but it would liley be off the record (all of their previous investigations, however, are public information).

Roberta Mikles

Nov. 10, 2010, 10:49 a.m.

It is truly a sad day when we see such as this PR release

Roberta Mikles RN Patient Advocate

Nov. 10, 2010, 10:57 a.m.

This PR release awakens many and supports that which many have believed for a long time. The lack of true transparency, honesty and care for patients is evident in this release. Ofcourse, the industry wants to immediately do damage control, however, it is well known that being upfront and honest when mistakes are made goes further than denial. They mention infection, which is the number 2 killer of this vulnerable population, but do they mention that infection control continues to be the most frequent cited deficiency e.g. basic practices as hand hygiene and changing contaminated gloves when needed????? NO, they do not mention such. This shows a lack of understanding that there ARE problems in facilities. I have heard over and over, from patients throughout the US of how staff do not implement correct practices. Foundation of care is for all to be appropriately educated and trained so that there is a clear understanding of why correct practices must be implemented and effective unit-level supervision must be ever-present to ensure correct practices are being implemented.
Again, why can’t the providers just agree there are major problems, work with those of us who have ideas about how to change this existing culture and move on to improve ‘real’ care.
Roberta Mikles RN
Dialysis Patient Advocate
http://www.qualitysafepatientcare.com

Jonathan Steen

Nov. 10, 2010, 11:45 a.m.

I don’t get all the excitement. This is not a press release, it’s a communications action plan. And it doesn’t look like “spin,” it looks like an organization doing the best they can to make sure their side of the story is told. In fact, I see no instance of their communications team suggesting anyone decieve or hide the truths - just ensure that their side of the story is available for balance. It looks to me like this communications team did an outstanding job and should be given a pat on the back for a professional job well done.

Joe Harrington

Nov. 10, 2010, 12:23 p.m.

I agree that there’s nothing sinister in planning for a response, but I give a “thumbs down” to the KCP plan. A better approach would be to tell affected people that a potentially negative story might be coming, and to watch for a response by KCP to the actual content.

All the “good news” about kidney dialysis should be available already on the web and elsewhere; if stakeholders and reporters aren’t aware of it, PR hasn’t done its job. Responding to bad news with irrelevant boosterism would be like an airline, after a crash, saying “Well, all our other planes landed safely this year.”

Lindsey McCaffrey

Nov. 10, 2010, 1:44 p.m.

I agree with Bill S and Jonathan Steen. Of course the organization in question would create their own risk-mitigation plan. That’s just business.

That said, I’m curious to know if KCP is going to scrap this comms plan and draft up a whole new one.

Bravo to these PR folks for being prepared.  Isn’t that their job? I don’t know much about dialysis or these issues, but I would hardly call this “spin.” Seems like solid facts that are relevant and needed to tell the whole story.

I, too, agree with Bill S and Jonathan S. It looks as if KCP is working its tail off to be prepared for a potentially ugly story. They’d be missing the whole point of communication if they didn’t make an effort to counter this. That’s just part of the job.

Robert F. Hickey, Ph.D.

Nov. 10, 2010, 2:55 p.m.

As a dialysis patient for more than 5 years I can attest to the corruption within the dialysis/transplant industry. Every visit to the DaVita center I attended included a screed encouraging all patients to contact their congressional reps to urge higher payments from Medicare/Medicaid. Kent Thiry, CEO, DaVita, had total income in 2008 of more than $29 million. His salary is right at $1 million with bonuses and stocks making up the remainder. The bonuses and stocks were granted for outstanding profit performance. Nephrologists across the country contracted by DaVita to provide ‘medical oversight’ get paid bonuses for productivity. (i.e.: keeping the chairs full). As a result, as reported by Ornstein & Weber, in their LA Times 27 installment investigative series patients are not told on average for 12 months that they should go to a transplant center to register for the National Transplant Death Waiting List. This story just scratches the surface of the corruption, conflicts-of-interest, and outright theft that is permeating the medical-industrial complex that operates all transplants in this country.
I have been researching this travesty for the past 5 years. Go to my blog at: http://www.innovativestrategies.us to read more specific details.

I am surprised that ProPublica considers this newsworthy ... Naturally when a company or organization is under attack, they will counterattack in the best possible way. Oftentimes, seeking professional expertise on how to make sure the correct message is disseminated appropriately is the best way to go. This move should not come as a surprise to anyone with any media savvy. Handling crises from the inside can get messy because internal employees are often too close to the issues, and can even be emotionally tied to them. It is plain good sense to hire outside professionals ... Especially in this case where the leaked media strategy offers such sound advice. No facts are twisted, no issues are spun. It clearly and concisely addresses the points raised in the article. The organization is engaging in conversation with its critics ... I just don’t see the problem with that?

@ Carissa - ProPublica is noted (and praised) for offering readers every single fact it can on a given story. That makes this newsworthy - it is an original doc from a stakeholder in the series about kidneys.
No-one said they were “surprised” to see this. Of course the lobbying group would not remain silent, no-one expects that. This is their position, in their own words.
Your straw man arguments - “what is the problem with that” and “this is no surprise” ring false. You alone see a problem, we are glad to have ProPublica speak truth to power, power that stands to make a lot of money enabling the status quo.
Nobody says this is a problem. It is a fact - this group takes this position.
News does not get more fair or balanced than that!

I agree with Starry. This is newsworthy simply because it adds more information about a facet of the story. The fact that the plan exists is neither good or bad.

I’m a communications professional, so I’m interested in the inside-baseball aspects of this. My questions include: Is the story balanced or is the industry just afraid it won’t be? Or have the industry’s executives been drinking their own Kool-Aid to the point that they can’t recognize a balanced story, and think that anything short of effusive praise is a hit piece?

Frankly I think ProPublica aids the kidney community by publishing their rebutall message points prominently.  This memo is a well-thought, rationale response to help an organization communicate in the face of coverage with which it takes issue.  the memo passes a key test:  will it be okay if it shows up in print (or online in today’s world) ?  For this memo, the answer is yes.  What would be derlict is if the PR firm didn’t prepare a memo such as this.  The only “spin” in this whole conversation is ProPublica’s use of the word in their headline.

Roberta Mikles RN Patient Safety Advocate

Nov. 10, 2010, 11:45 p.m.

Perhaps KCP is just defending instead of not admitting that there are major problems that exist in many facilities and that preventable errors that cause injury or death are inexcusable. As I have stated, for six years in my advocacy, if providers would admit mistakes and work with patients/families to correct same so that these mistakes do not continue all would be better off rather than denying same. This continued mentality that denies when preventable errors occur is a lack of respect for the patient and their loved ones. I am guessing that dialysis providers have not been on the same track as hospitals in admitting when there is an error and being transparent. This avenue has proved to result in more effective results e.g. less law suits. I remember my father being at the receiving end of a preventable error that caused him distress. The nurse who made the mistake apologized and it was evident that she felt very bad. However, no one, including the physician, ever discussed with us and it was basically shoved under the rug, unless I brought it up and then there were vague responses. The result of our interaction with this nurse was that we had more respect for her because of her apology and desire to learn to correct practices. Another time, knowing there was an error, staff denied such.
Transparency and being truthful and upfront when mistakes happen are the best avenue to travel. Again, I would welcome dialogue with providers to tell them loud and clear that being upfront, honest, and transparent when preventable mistakes happen goes a long way and often prevents a law suits as have been proven.
Roberta Mikles RN
Dialysis Patient Safety Advocate

Roberta Mikles

Nov. 10, 2010, 11:48 p.m.

afterthought—- perhaps KCP wanted this leaked? Maybe KCP thought if it was leaked the information would get more media attention?

Certainly something to think about

Roberta Mikles, RN
Dialysis Patient Safety Advocate

The sad part is that nowhere does the KCP prepare for or show some compassion for the folks who died while in the care of dialysis centers. If I had lost my mom or sister because of mistakes made, and I saw this as a planned response - I’d be furious.

okarol/admin
ihatedialysis.com

It’s a PR action statement, not a press release as others have pointed out. Reasonably professional, although relying on an awful lot of people to do an awful lot of lobbying which will never happen. Essentially a PR company covering its own ass because it knows the fan is going to become very, very dirty and here’s nothing to be done about it. . . but it won’t matter in the long run because Washington sold out to the healthcare industry a long, long time ago. Has anyone asked the Tea Party what they think about this?

When I read the headline, “Read the Leaked P.R. Plan to Spin Our Dialysis Investigation,” I was expecting you’d uncovered a devious plot that would embarrass the KCP.

But this “leaked plan” simply reflects a smart communications strategy for responding to an important news story. I’m glad you’ve taken the opportunity to post the group’s talking points on your web site because that side of the story certainly didn’t show up in the original article.

The coverup drew me to the story. Thanks to KCP’s proactive stance (no doubt also in creasing billable hours)’ I read an article that I normally would have missed.

Roberta Mikles,RN Dialysis Patient Safety Advocate

Nov. 11, 2010, 9:38 p.m.

Okarol, I agree completely. This is the part that is so disheartening for many. I remember, as we all do, many incidents that resulted in harm to a patient(s) that made media attention. Obvious, from recall, that providers never admitted anything but made excuses. This is about honesty, admitting mistakes happen and truly realizing that although there are wonderful caring people that work in dialysis that there are also those who implement incorrect practices, intimidate patients and just don’t care about what they are doing. The culture within the unit, as describe to me by many patients, if often that of ‘a hostage like situation, we are at the mercy of the staff’.
Roberta Mikles RN
http://www.qualitysafepatientcare.com

I’ve followed this story as it’s developed; and paid close attention to the comments posted in regards.  I am a dialysis administrator.  Prior to joining this industry, I was an officer in the military.  I joined the dialysis community, after retirement, not because I had to ... but because I choose to.  Your article highlights all this is or may be wrong.  What it doesn’t do is talk about the grandfather, who after 25 years on dialysis, got to see his grandson graduate from college.  Without dialysis, this would not have been possible.  There are many more stories like this ... than what is highlighted in the article.  Everyday, thousands of dedicated dialysis workers give tens of thousands of patients a longer lease on life.  That being said, there’s no such thing as perfection in dialysis ... or in any industry.  Mistakes happen, and will continue to as long as humans are involved.  The best that can be expected is that you guard against them, train, train and remain vigilant, and when they do happen, learn from them and don’t let them repeat.  I will say this, the people I work with are some of the most dedicated professionals I’ve had the pleasure to be associated with.  They care about their patients and go the extra mile, and work long hours to ensure that patients have the best quality if life possible.  We do everything we can to make sure that brothers, sisters, mothers, fathers, grandparents … are around to be with their loved ones at holidays, etc.  As I said is dialysis perfect … no.  But the alternative to dialysis is not perfect either….

well stated David.  I,too, work in a dialysis center and know that mistakes happen because we’re human.  I also know that our patients assume the risk when they sign the consent forms to receive dialysis treatment.  The patients rely on us for care, for compassion, for advice, and for many…a place to be social.  We are in-serviced often and reminded DAILY to be vigilant about infection control practices; I challenge the author to spend a week working (not shadowing), actually working in a dialysis unit as a CCHT.  Good luck.

Roberta Mikles, RN Dialysis Patient Safety Advocat

Nov. 13, 2010, 8:27 p.m.

And, our group, Advocates 4 Quality Safe Patient Care, in all due respect (we agree to disagree) challenge those working in the dialysis-setting - RNs, LVNs, Techs, Physicians, etc., to walk in the shoes of one who requires this life-sustaining treatment, for a week, or less, specifically when one has a bad treatment with cramping, nausea, etc.

There is no arguement that many facilities and many staff provide quality safe care, however, due to the culture within the dialysis-setting, often this prevents true patient centered care of which all providers profess they give.

Roberta Mikles
http://www.qualitysafepatientcare.com

Kidney Care Partners, in my humble opinion, is nothing, but a corporate front for the dialysis industrial complex designed to influence media and politics to their benefit.  In other words, follow the dollar. 

Is this group any worse than any other corporate spin doctor group that represents any other industry?  Probably not.  I venture to say that every corporation in this group has convinced themselves that they are advocating in the best interest of the dialysis industry, as a whole, as well as the many patients their corporations serve.

Basically, like any other corporate spin doctor group, their job is to convince you that ‘a turd on the floor is really a Baby Ruth and that, if you have a bug in your food, it’s free extra protein and you should be glad to get it.’  That’s what spin doctors do.

I’m addressing this posting to “David” the military fellow turned renal administrator.  I, too, am ex-military.  What you’re talking about, here, is “acceptable loss.”  You’re not saying it, but you’re implying it.  I once had a boss that wanted to excuse a situation where there had been obvious and gross malpractice, which resulted in the death of a patient who’s soul survivor was a 16 year old boy still in highschoo.  She simply wanted to cover it up.  Her words were, “Joe, everyone dies, eventually, and you can’t save everyone.  Mistakes happen, but it’s not the end of the world.  And, why punish the whole hospital for the mistakes of a few.”  My answer to her was, ‘we’re all going to die, eventually, but that doesn’t mean that we line people up and push them off a cliff.  Needless to say, we didn’t see eye to eye on morals and ethics and we parted ways.  We can’t excuse wrongful injury and deaths to patients by convincing ourselves that “well, you can’t save everyone and, well, overall, we’re doing a good job.  Hey, you have to break a few eggs to make an omlet.  So, let’s just turn a blind eye to our mistakes, because, that’s safer for us.”  Being an apologist for death and injury in the world of dialysis is not a good start for you, as a renal administrator.  In fact, I’d be concerned about you as a military man.  I wouldn’t want to be in your foxhole and have my life depending on you.

I’m addressing this post in answer to “Collins.”  Collins, I don’t think that patients sign concents for dialysis, expecting that a nurse or technician is going to pour all their blood out on the floor, or that they’re going to dehydrate them to the point they’ve become a raisin, resulting in their death.  Let’s be clear, things can and do happen, which is part and parcel of Murphy’s Law.  However, gross neglect and failure to properly train staff is not part of the bargain when a patient signs a consent.  The consent isn’t a get out of jail free card for incompetence and neglect.  One thing really bothering me is the defensive responses from those who think they’re protecting or defending ESRD providers.  No one is saying the USA hasn’t done a wonderful thing in creating the Medicare ESRD program.  It’s a great program.  However, it won’t be great for very long if we don’t get a back bone and correct our mistakes.  You can’t correct problems if you can’t even admit they exist.  Again, what providers want is for patients to sit in their dialysis chairs, take their treatments and be quiet.  The ESRD providers are the all wise parents that know what’s good for patients and patients are the children, who should be seen and not heard.  Patients who speak up about problems are labled as “trouble makers.”  We’re not improving ESRD care in this country by stifling the voices of our patients.  Furthermore, we do a dis-service to our patients, and ourselves when we don’t discuss what’s wrong with our industry.  Part of the trouble with our nation is that everyone wants to hear only good news and pretty stories.  Well, reality states that some of the news is not good and the stories are not pretty.

Joe, thank you for your service to our country!
I think you misunderstood me.  I don’t believe any type of misconduct or malpractice should be tolerated.  Indeed the opposite is true; it must be addressed and corrected.  What I’m saying is ... dialysis, as with practically all types of medicine isn’t an exact science ... it’s very complex.  For people to believe that nothing’s ever going to go wrong is naïve.  But, weighing all the positives and negatives, what is the better solution?  I recently read a play, by a playwright named Meeks.  It’s called “Who Lives.”  It’s about the death panels on the 1960’s and the struggles they went through trying to decide who got the few dialysis spots available at the time, thus assigning some to death.  It struck me, why the hate.  Dialysis is a right in America.  And like most things in America that are deemed rights, there’s a tendency to take for granted.  Despite the venom in these posts, I’m honored to work with some of the best people in healthcare, caring for some of the best patients in dialysis.  Every day I go to bed knowing we made a difference.  I refrain from personal attacks in commentary, but will respond to your comments, Joe.  I’m retired because I was injured in Afghanistan.  I now walk with a cane and have been pieced back together.  I served in the medical service … so there are many people that were in my “foxhole” that are alive because they were with me.  Had you’d been there, Joe … you would have been welcome too.

David,
Perhaps I misunderstood you.  I’m a two tour of duty Vietnam Veteran, 12/69-12/71, so I sympathize with your situation, and your time in service to your nation.

The fact is that when patients and their families have no outlet for their anger, you’re going to be reading the “venom” in their posts.  Trust me, after 37 years in this business and seeing how patients are patronized at renal network meetings, I can understand how they feel.

Here’s the deal, if it were not for these hundreds of thousands of people on dialysis, we wouldn’t have the jobs we have, today.  We need to respect patients and their families.  They are patients and consumers.  We provide service, but not customer service. It isn’t just dialysis, it cuts across all lines of healthcare.  Providers have created an “us against them” mentality, which is not patient friendly.

China’s just about ready to have the largest, most modern train system in the world, very soon.  That will mean little if they treat their customers like crap.  “Hey, your lucky you’re on the train, so shut up and eat your stale crackers, while I ignore you.”  That’s not customer service and that’s how many patients are treated.  The overwhelming feeling, especially amoung larger providers, is that “patients just need to appreciate what they’ve got and shut up.  I don’t want to hear any complaints.”  So, everytime a patient or family member complains about anything, they are labled as “trouble makers.”  Some have even been threatened with discharge from the dialysis unit for complaining.

When professionals are in a position of power over a patient, they need to be aware of their actions, and how they are presenting themselves when a patient has concerns.  Of course, like in any other business, there are chronic complainers, who will never be satisfied with care, no matter how good it is.  In spite of that, you can’t generalize that opinion to all patients.  Most patients and families won’t say anything until a situation becomes onerous.  When they bring issues to administration, people need to listen.

For example, a nurse was poisioning patients.  Some patients were suspicious, but no one said anything out of fear of reprisal.  The result was a bunch of dead patients.  That’s the price of silencing our patients and their families.

Joe; seems like we’re more alike than different, I’m glad to say.  I totally agree with everything you said in your latest post.  That’s the way I endeavor to conduct myself and my clinics everyday ... with utmost respect for our patients and families.  Most of the time we accomplish; sometimes we fall short.  When we fall short ... we have to make doubly sure we don’t fall again.  This business, like all business where people are in power positions is ripe for abuse.  I know it happens.  My point in all of this is/was ... to make the industry appear evil (you didn’t in my opinion) is a stretch and could scare future patients.  Is there room for improvement, always.  The nurse you mentioned; I believe sge administered bleach ... are we talking the same case?  If so, what bothers me is not only that it happened, but review of the clinics data by management and the medical director would have shown the problem developing.  Instead it looks like they possibly paid lip service to a review of their patient care indicators.  The whole lot deserves whatever they get.

You are a patriot ... thanks again for your service.

David,

No, I am more than aware of the situation you are speaking of down in Texas, but, sadly, no, it’s another situation.

Thanks for your kind words.

Joe

This article is part of an ongoing investigation:
Dialysis

Dialysis: High Costs and Hidden Perils of a Treatment Guaranteed to All

Nearly 40 years after Congress created a unique entitlement for patients with kidney failure, U.S. death rates and per-patient costs are among the world's highest while the biggest for-profit providers flourish.

The Story So Far

Dialysis holds a special place in U.S. medicine. In the 1960’s, it was the nation’s signature example of rationing, an expensive miracle therapy available only to a lucky few. A decade later, when Congress created a special entitlement to pay for it, dialysis became the country’s most ambitious experiment in universal care.

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