McCleary MRSA Prevention

I have often thought of the nurses and other caregivers my father had while he was hospitalized in his small community hospital.  It was a full 6 days before he was diagnosed with MRSA pneumonia when he was readmitted to his hospital with fever and pneumonia.  For a full 6 days, while he coughed up copious amounts of sputum, there were no contact or respiratory precautions used during his care.  My mother and I both helped care for him and he had numerous visitors as well.  All of us…caregivers and visitors alike were exposed to Dad’s infection.  I wonder sometimes if any of his caregivers became colonized because of unprotected contact with my father.  It’s an awful feeling to know it was possible and it was because of inadequate infection control policies in that hospital.  Dad had several risk factors for MRSA, but of course they didn’t to MRSA screening at all back then, and my impression is that they still don’t.  That will change soon with our new law.

I spoke at length with a middle aged RN tonight.  She is a friend of my cousin’s.  She was an ICU nurse and she contraced MRSA while working in a Maine Hospital.  Initially, she was denied any compensation from that hospital. A lawyer helped her with that.   She suffered from bilateral MRSA pneumonia and went into MRSA sepsis.  She has had bouts of illness since her acute infection and still suffers lasting effects from the illness.  If she was 80 instead of 45, she would probably be dead.  She knows that.  Now she cannot get a job in an acute care hospital.  She was infected in one, but now nobody will hire her.  I wonder why????   There is something just plain unfair and wrong with this picture.  It is OK for a hospital to be lax with Infection control, and infect employees and/or patients,  and then they can deny a nurse work and/or compensation.  My father had to pay for his own nursing home care tha was necessary because of his infection.  The injustice of it is astounding. 

Many victims of MRSA suffer emotional stress, life altering illness, and sometimes death and yet hospitals get to keep their rates a big secret, deny compensation to those harmed by the infection and they get to continue on doing business as usual.  This is kind of like loading a gun (using inadequate Infection Control measures), shooting the gun (infecting patients and caregivers), and then just reloading the gun to start over.

Let’s just hope that our Maine hospitals are at least law abiding.  The law says they have to do surveillance of high risk populations.  The screening of those populations will start January 4.  And, if Representative Goode and I accomplish what we hope to, the screening will be done correctly and adequately in order to make a big change in our MRSA infection rates. This screening and the appropriate isolation and precautions necessary after a positive result, will drop MRSA rates.  Decolonization when indicated is also a very important component of prevention.

We must be optimistic.  MRSA will be conquered.

I’m inspired by the wish list from the Consumers Union Safe Patient Project group to write my own 2010 wish list.

1) I wish that Maine Hospitals and every other hospital in the US would adopt the entire 2003 SHEA recommendations for MRSA prevention.  It works and there is no denying it.

2) I wish all hospitals would acknowledge MRSA as an ever present and evolving deadly infection and approach it as such.  We now have a world wide epidemic.

3) I wish that doctors would list MRSA as a cause of death on all death certificates of patients that MRSA has been a contributing factor in their death.  Just writing “Sepsis” is not sufficient.  They must list the cause of Sepsis.

4) I wish that Maine hospitals would become more transparent with their MRSA infection numbers by reporting them to the Maine CDC.  At this time it is only mandated to report invasive MRSA.  According to the Maine CDC there have been a grand total of 9 invasive MRSA infections in the entire State of Maine from 1998 to 2007.  In 2008 there were 45 reported for the single year.   These numbers are misleading.  Do we need a mandate to get Hospitals to report their infection rates, recognize the problem, measure it and deal with it.

5) I wish all healthcare providers would learn to respect the space and bodies of all patients by faithfully washing their hands EVERY time they touch a patient or their surroundings

6) I wish that every hospital would isolate every MRSA positive patient to prevent spread of disease.  We know that many do not do this and that failure to do so fosters spread of disease.

7) I wish that every hospital would offer those who are MRSA positive the opportunity for decolonization treatment prior to an invasive procedure.  The simple treatment of Mupirocin nasally and Chlorhexidine baths for 5 days preoperatively can and will prevent many invasive infections.

8)  I wish doctors and other prescribers would stop giving antibiotics to patient who do not need them.  This would help to stop the emergence of new and scarier multi drug resistant organisms.

9) I wish we activists didn’t have to fight so hard with the providers of our care to take the necessary steps to STOP MRSA NOW!

10) I wish our “experts” and others had paid attention to MRSA in the late 1980s rather than waiting until it killed my father and 19,000 to 45,000 other patients every year….more than AIDS, or Breast Cancer, or Motor Vehicle Accidents.

11) I wish we didn’t have to continue our fight in Maine to get MRSA screening and prevention right.  Screening will begin in 2010, but it is not optimal and will be of limited value.  I wish we could get it right the first time.

Anyone can add to this list.  Just write in comments.

Yesterday, I passed the nursing home where my father suffered for 9 weeks with MRSA pneumonia.  He died shortly after the holidays on January 9, 2009.  His passing was very sad but welcome after we had watched him gradually and progressively fade away.  His body weight was just falling off, steadily and alarmingly,  and his physical and emotional strength was gone.

This year will be our first Christmas without him.  In the weeks preceding Christmas last year, my mother and I and my brothers kids all tried to think of things that might please him, while he was in his lonely isolation room in the Nursing Home. Most years anything with chocolate  or other sweet foods would totally satisfy him.  He had an appetite that wouldn’t end.  Last year,   my brothers kids put together a collage of photos for his bare walls.  He had a profound hearing loss from the necessary antibiotics, so he had difficulty hearing his TV.  I picked up a new digital TV for him that we thought could have an amplifier device added to it to help him hear.  It didn’t work, so we brought back his older one so he could hear it a little.  Then we got him one of those amplifier devices that you see on TV.  When Mum or us kids weren’t there, the TV was all he had….other than his caregivers that is.

I brought in a big fake poinsettia, and somebody brought by a little crocheted ornament to hang on his drawer handle.  All of these things made his room more festive, but he didn’t care.   He wanted to be with my mother at home.  He pleaded and he bargained with us all the time.  He would ask, “If I eat, would I be able to go home?”  “If I walk, would I be able to go home?”   The sad fact was that he couldn’t do either.  He couldn’t even sit up or turn over in bed on his own.   His illness and the powerful drugs he needed for it made him unable to do either, eat or walk.  At times, I think his caregivers thought he was being difficult…they thought he wouldn’t walk or eat.  I am convinced now, after reading stories of others who have suffered through deadly MRSA  that he just plain COULDN”T eat or walk.  The disease and the treatment took away his strength and his appetite. 

My mother and I considered taking him home.  For him to come home, we would need help.  My mother was 82 at that time.  I am 60.  I am big and strong, but I could not do all that my father needed done alone.  He had become a complete care bedbound patient when he became ill with MRSA.  He needed so much care and of course there was the problem of him still being colonized and coughing up huge amounts of sputum.  How do we go about caring for him at home without putting my elderly mother at risk for MRSA herself?  Hospice would help, for perhaps an hour or two a day.  The logistics of taking Dad home were overwhelming.  He never came home and it broke his heart and ours.

So, although all of us did what we could to cheer Dad up on the holidays last year, the only thing that worked was our visits and especially my mothers constant presence at his side.  He needed her more than anything else, including medicine.  The medicines never worked.

I drove by his nursing home yesterday.  The Christmas lights are there and the front of the building is festive, but none of that hides the suffering going on inside.  My selfish comment to my husband was…”I am so glad that Mum and I are not still going in there all the time”.  I miss Dad more than anyone can imagine, but I do not miss seeing him suffer and I don’t miss the frustration of not being able to make him healthier or happier. 

These intimate details of the suffering and frustrations of dying MRSA patients and their families are the facts of life and death with MRSA.  It is impossible to know the pain of the disease unless you have had it yourself or you have helped care for someone you love only to see them  suffer and die from it.  These are the details that we must get across to law makers, the CDC, healthcare providers and others who can make a difference in MRSA prevention.

On November 17 and 18, I attended an event sponsored by the Consumers Union, Safe Patient Project, titled “To Err is Human, To Delay is Deadly”.  Other activists and advocates very similar to me, attended and participated in panels.  Victims and organizers also attended.  The CU has the momentum to make  difference for patients and their safety.

I was inspired by the work and the level of dedication of these activists.  Most of us work alone with no funding and our goal is simple, to protect vulnerable patients from harm when they are being treated in our nation’ or State’s hospitals or by our doctors. It is little to ask or expect.  We pay a huge premium for care and we deserve the best.

The work of the Maine Quality Forum MDRO metrics group regarding MRSA  has culminated in a plan for a “Point Prevalence Test” .  This is the approach they have chosen rather than just going ahead with a good solid MRSA screening program.  During this ”test” we will screen known high risk populations for MRSA only on admission  for 6 months.  Then each and every hospital will report their results.  If at those hospitals, any population tests less than 7% positive screenings, they will eliminate that high risk population from the populations to be screened from that point on.  This sounded reasonable until I figured out that only 5% MRSA positives of the over 4000  transfer patients to EMMC has each year would be 200 patients colonized that would be admitted with  undetected MRSA colonization. (Only 1% would be 40 patients).   200 or more patients would go into EMMC each year colonized with MRSA colonization facing a myriad of procedures, or surgery, or other risky events that could leave them infected and disabled or dead.  Colonized patients are 7 times as likely to suffer an active MRSA infection.   200 patients would not be isolated and so could spread MRSA to other patients who are roomed with them.  This is not acceptable.   The goal should not be to do a test and eliminate high risk populations for screening purposes. The screening program should have the goal of finding all colonized patients.  Any percent of patients testing positive should validate a high risk population for screening purposes. On top of that,one single MRSA active hospital acquired infection in any population should trigger the beginning testing in that new high risk population.

If however there are no positive MRSA screenings in any particular high risk population after a full year, it would be reasonable then to eliminate them from screening.  If  in that facility, any patient in that High Risk population or any other population has an active hospital acquired infection at any time beyond that, that population should be added back into the high risk screening program.

So, after all these months of debating and negotiating in the MQF, we now have a plan that has potential to self destruct within the next 6 to 9 months. We also have a plan that has no method of determining efficiency.  Screening on discharge is the only way we would know if a pateint has become colonized or infected while hospitalized.  Our law says that  “hospitals will do surveillance on high risk patients”.  It does not specify that the surveillance would be only on admission.  Most patients are at increased risk for colonization or infection because they going into the hospital or a particular hospital department.  We should re screen these patients one week into a hospital stay or on admission into the ICU, and on discharge.  THIS ADDITIONAL SCREENING IS THE GUAGE ON HOW EFFECTIVE INFECTION CONTROL FOR MRSA IS IN A FACILITY.  It is exactly what the VA hospitals all across the country are doing.

6 months isn’t  enough time to evaluate if the screening and the other preventative recommendations are stopping MRSA or even decreasing it.  It will take a year or two to know if a program is working.  Of course, most of my proposal for Active Detection and Isolation was tossed in HHS committee hearings.  In it’s place the ESO (Epidemiologically Significant Organism) draft was accepted.  It is a generic prevention program that may help, but it really does not clearly address specifics of MRSA prevention.  The specifics are in there, but  they are obscure and subject to interpretation.  ADI specifially outlines the steps necessary to stop MRSA.  All of ADI was included in my original proposal but it was considered “too cumbersome” for our hospitals.  That’s too bad, because it works when enacted.  It will take at least 2 years to see if this ESO draft and this limited MRSA testing will work.  I am not confident that it will.  One can hope it will……

This work is frustrating.  Advocates and Activists don’t have access to accurate numbers of MRSA and infections or deaths because of it.   Most of us have a family member that has either died or become disabled because of it, or have had MRSA ourselves. Because of our loss and troubles we have come in contact with many MRSA victims or their survivors, but we never have the actual numbers of patients effected by this horrible scourge.   Keeping the number of infections a secret by not reporting them (and making the numbers public )allows hospitals the advantage of knowing the “data” and the rest of us are kept in the dark. This puts anyone like me, who is  trying to improve patient safety with work toward prevention, at a disadvantage.   This secret keeping about data doesn’t have anything to do with prevention or saving lives…it has to do with power and control and elitism.  It also has to do with lack of transparency and disclosure. And it has to do with outright fear.  Hospitals are more afraid of liability than they are of almost anything else.   I did not know the rate of patients who test positive in current MRSA screening programs in Maine hospitals when I agreed to the 7% rule.  Since the day of that meeting, I have written to both of the biggest medical centers in Maine.  One responded but did not answer my question and the other did not respond.  So much for transparency or collaboration.

I have all kinds of time.  I am retired.  I don’t require a paycheck.  I have a home office…my laptop, my printer, my phone  and my lazyboy.  So, I am prepared to keep working at MRSA prevention until I believe Maine hospitals have it right. I do not believe they have it right yet.  When rates drop and our hospitals are safe and infection free, we will all know we have it right.