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Posts Tagged ‘Dialysis patient stories’

Healthcare Industry Push Back, Patient Safety Activism

September 13th, 2012 3 comments

I am now well into my third year in Patient Safety Activism.  My father’s preventable death because of a hospital acquired infection continues to drive my passion.  Although he was old and he had health problems, the infection that took away his independence, his strength, his appetite and his ability walk and to live out his remaining days with my mother should not have happened.    Nobody except  hospital insiders and the grieving family and friends of the other 2 deceased victims of that MRSA outbreak knew about it.  So, my father was not only a victim of MRSA, a deadly superbug, he was also a victim of hospital secrecy. Hospitals generally sweep hospital harm under the rug and schmooz patients and families into believing it is part of doing business.  I do see a gradual change in this, but it is taking way too long.

Yet, when victims or their loved ones become patient safety activists we are expected to be kind, polite, and above all calm.  Many of us have been characterized as angry whiners. I’m sure we have been called worse behind closed doors.   Imaging that!  Let me just say, I am angry.   My anger is completely  justified.   But, when I testify anywhere, or when I share my father’s tragic story, or I work with anyone on patient safety, I remain polite, and I restrain that roaring lion inside me.  I am a professional, and I use the manners that my parents taught me.  This brings me to healthcare industry push back.  I knew when I stood up to fight for patients and patient safety, that I would be exposing the underbelly and preventable horrors of healthcare…the infections, the errors, the short staffing, the disrespect and paternalism,  the ‘toxic hierarchy’, the big bad truth of what happens inside hospitals and other healthcare facilities.  I knew it would not make me popular with the “industry”, but of course that was not the reason for my work.  Patients and their safety were my priority, much like when I practiced as an RN for over 30 years.  I saw so much during that time, but I had bosses…in fact, I layers upon layers of bosses and my family depended on me for that paycheck.  How far could I realistically go with my advocacy during my employment.  This is why I find retirement so liberating.

Healthcare industry push back is alive and well.  My first bitter taste of that was in my very first meeting with Hospital people about MRSA. A contentious doctor  proclaimed that the new Maine law to screen high risk patients for MRSA on hospital admission was  “irrelevent”.  I had just run a patient safety campaign and spent about 4 months writing and rewriting a very involved and detailed legislative proposal for MRSA prevention for the Maine HHS committee, to end up with a tiny part of it in Maine law.  That big old lion was roaring inside my head and I wanted to let him out to attack that doctor.  But, being the lady that I am, I  kept my cool, and moved  beyond that arrogance, because we were all in that room to do a job, and that was to make patients safer.   The rule making work continued in that committee for months, and his attitude never changed. If I said white, he said black.  So much for collaboration.  Interestingly, the rest of the group was mostly nurses and none would contradict that doctor.  Perhaps I am a little biased, but I love nurses and the herioc work they do, but those nurses ’just went along’.    “Toxic hierarchy” is a new term I recently learned and it describes this group’s behavior perfectly.

This summer, I spent most of my time working on a campaign to stop the acquisition of my local dialysis clinic services by a large for profit dialysis corporation.  My reasons for this action are described in an earlier blog, but the greatest concern over this is patient safety and access to care.  I talked with experts, dialysis patient advocates and former patients and employees of that corporation.  I worked with the Maine State Nurses Association, the Maine Peoples alliance and other local socially responsible groups.  I did my homework and research and compiled resources and documents. Most importantly, I collected stories of patients who said they were harmed and dismissed.  I took all of this and carefully prepared testimony for the Maine Certificate of Need hearing on July 10.  In August, I came upon a letter that the corporation had written to Maine officials. The letter was almost entirely about me!  It contained misleading and downright dishonest comments about my work, how I go about it, and my character.  It was apparently an attempt to discredit me, and my work and to silience me and the patient’s voices. It appeared that the letter was also written to pander to the current pro business and anti union sentiments in our State governement. This guy covered it all, and if one didn’t know me, and saw that letter, they would  think that I am a monster!   This carefully crafted letter and  packet of “evidence” against a  retired RN volunteer, who is now an honest hard working patient safety activist  was  the biggest and longest piece of push back rherotic I have experienced yet!    And, it is now an offical State document!     My first thought was, if they treat me this way, imagine how they treat patients.  Oh my, those poor vulnerable patients.  The good thing about this letter is that it validated my beliefs about how ‘small’ this corporation really is.

I didn’t expect to make new friends or win over the healthcare industry with my work.  I did expect to help save lives, make patients safer, and to be treated with respect while I am doing it.  All of us who do this work have the same expectation. Because we have chosen to lead in Patient Safety because of personal tragedies, instead of waiting for the industry to do it all on their own or even to invite us in, we are sometimes criticized and disrespected.    I have watched two of my passionate colleagues experience push back when we were included in industry leaned events.  One was a nurse who tried to talk about her mothers tragic healthcare debacle in a federal DHHS HAI meeting a  few years ago. The physician moderator of the group rudely cut her off mid story and she was terribly upset by that.  The second one was a presenter at the recent Patient Safety Academy in Portland, ME.  He was doing a detailed and well prepared presentation on C Diff.  His beautiful and healthy middle aged mother died of the horrible infection and he has done tremedous work on awareness and prevention.   A very rude crabby infection nurse, cut him off and ‘told him a thing or two’.  She was obviously in denial of the imperfections in hospitals, and took my colleague’s accurate and non accusatory presentation as a personal affront.  Her actions were embarrasing to her two coworkers and to everyone else in the room.  This was my colleagues first time doing a presentation at such an event.

Civility.  Is there any such thing in patient safety advocates’ conversations with the healthcare industry?  I think so, but it isn’t consistent.  All of us need to take a deep breath and think about who really matters in our discussions.  We need to put away the egos, denial and the defensiveness. Al Gore would advise us to put the anger in a lock box, and I really do make an effort to do that.  We all need to consider what and who our conversations are about.  They are about patients, suffering, hurting human beings, who need all of us to survive, heal safely and live.  Come on….let’s get along, and have these conversations without push back.  

Backbone.  That is what it takes to do this patient safety activism job and do it well.  The industry has a lot to learn from us, and perhaps the first thing they need to learn is manners.   I have never seen any of my patient safety colleagues be impolite during patient safety events or conversations.

The debate over the sale of EMMC dialysis to Davita

July 14th, 2012 7 comments

 July 12, 2012 

 The debate over the sale of EMMC dialysis patients to Davita is not a Union vs EMMC issue, as some choose to say.   It is a Patient Safety issue.  Patient safety is an issue for every single Maine resident who uses our healthcare systems. This Davita issue is also about relinquishing local control and governance over the quality and safety of care provided to local Maine patients.  Unforeseen illness, injury or medication complications could put any one of us in a dialysis chair some day.  This should frighten every single one of us.

  I asked for a tour of the EMMC (BOYD) dialysis services the other day. The clinic supervisor seated me in the waiting room for about 10 minutes while he made the necessary calls to EMMC bosses to address my request. That gave me the opportunity to talk with the spouses of 3 local dialysis patients.  They were uncertain and fearful of Davita coming to Bangor.  One dedicated husband said he wished he had known about the hearing because he would have attended.  It’s a shame they didn’t know. Patients and families would have benefited more than anyone from the DHHS Certificate of Need  hearing. It seems that EMMC staff should have posted the hearing information in a dominant spot for all to see…especially patients and their families.  Sadly, the patient’s voice is left out of decisions that are most important to them.

 I was denied a tour of the facility.  Apparently, my concern for the safety of EMMC dialysis patients was not a good enough reason to be allowed to see it. Before I left, I had a brief conversation with the clinic supervisor.  He said he had done research on Davita.   I asked if he had read about how Davita has sued doctors because they resigned and left to work elsewhere because they believed Davita policies were not safe for patients. They bucked Davita policies.   Yes, the young supervisor had read about that.  “How did that make you feel?” I asked.  He said with a very non expressive face “indifferent”.  Wow.  I didn’t have anything else to discuss with this man.  His indifference over something this damning of Davita was alarming. He was responsible for every patient who was hidden behind those securely locked EMMC clinic doors.  Even though his response floored me, I realize that EMMC and Davita have wedged him into the middle of a situation that he has absolutely no control over.  If Davita comes, he and every other person, including doctors on staff at our dialysis clinics had better get use to not having control over anything in the “business” of Davita.

 

I am extremely concerned for EMMC dialysis patients if this financial deal goes through.  At the July 10 Certificate of Need hearing, I displayed  3 posters. Two of them had the real life stories of 5 patients from Davita clinics from across the US. The patient heroes (whose photos and stories were displayed) wrote their own testimonials about personal harm from their Davita clinics.  Most of them had been dismissed from their clinics, simply because they were vocal about their concerns and harm.  These 5 people were just a tiny sample of thousands of patients who have experienced the exact same thing.  I didn’t observe one single Davita rep, EMMC manager or dialysis staff person reading those stories, even after repeated welcomes to all to do so.  Could it be that they don’t care about patient harm?  Dr Razcek, EMMC vice CMO described the patients’ experiences  as anecdotal.  It’s odd that he would describe the stories of real life dialysis patients anecdotal, but swallow the stories or “so called” evidence of Davita whole. Dr R’s comment was insulting to the integrity of those 5 people who have suffered through harm, retaliation, segregation, bullying, physical and mental abuse, and now someone is questioning their honesty?   I have spoken with each and every one of those patients and they are real, their suffering is real and their stories are real.  I offered to put EMMC leaders in touch with those patients and that offer was refused.  These patients’ stories are the absolute and dangerous  truth about Davita.  

 

 “The right care, at the right time, in the right place” was in bold print in the half page EMHS ad in today’s BDN. .  Apparently, that promise is made to everyone except dialysis patients.  EMMC/EMHS  will have no control over Davita policies or the quality of care that our Maine citizens receive in Davita managed dialysis clinics.  There will be no local governance. Davita skewered the EMMC dialysis care  outcome reports during the public hearing.  If I had been an EMMC manager, that would have made me very angry. In fact, although I am no longer employed by EMMC, I do remain loyal, and it made ME angry. My family and I receive some of our healthcare services from EMHS and EMMC.  Who validated Davita’s data?  Davita did.  Conspicuously missing were Davita’s records of dismissals and patient harm.  Records of their care outcomes, patient safety measures,  and regulatory violations in California are available online.   The 5 patient stories I displayed were just a sample of many who have been harmed and dismissed by Davita.  As a Mainer, a retired nurse and as a former employee of EMMC, I was insulted by Davita leaders and their condescending presentation. 

 If EMMC continues to pursue this $10,000,000 sale, and dialysis patients are harmed by Davita, EMMC becomes complicit in any resulting harm and sickness that our local dialysis patients my encounter.

 Keep the control and funds for dialysis services in Bangor, ME.  Use any revenue to address perceived defects  in our local clinics. Keep the dialysis business-related revenue in the local pharmacies, laboratories,  and supportive services.  Keep the  safety of Maine patients in Mainer’s hands.  Davita cannot do one single thing better than EMMC except make money and pay stockholders.

My third display poster for the hearing , showed photos of the CEO of Davita in a Three Musketeer Costume and quotes from him  saying “It is not about the patients, it is about the teammates”.  These photos, quotes and articles are available to anyone online.   This poster should have made it perfectly clear that money intended for high quality dialysis care is siphoed off by Davita and goes to glitzy rich booze soaked  parties, huge new $100,000,000 Denver, CO headquarters, a $22,000,000 annually compensated CEO,  and most importantly to them,  into stockholders hands.  Davita is even banking on boomers!  I posted that article on this board as well.

Mainers, demand that the control of our local dialysis clinics stay in local hands.  Cheapened care, cookie cutter treatments, and Walmartesque  services from Davita will not benefit Maine dialysis patients.

 The State of Vermont rejected Fresenius (Davita’s biggest competitor) because citizens declared that For profit dialysis services were not for the public good of Vermonters.

 Davita services are not for the public good of Mainers.

 

Kathy Day RN Patient Safety Activist