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Sepsis, a race against time

August 25th, 2016 No comments

The day after my 83 year old father was readmitted to the Hospital, where he had contracted MRSA pneumonia, he slipped into Sepsis.  He was extremely weak and feverish on admission, and they had put him through a lot of testing and diagnostics.  My mother and I went into his room after lunch and I immediately saw a change in him.  His skin was ashen, and he was hard to arouse.  His nurse, a freshly minted RN, was typing on the computer on wheels right next to his bed.  I asked her to check his vital signs.  She said, “oh, he is just exhausted because of all the testing”.  This was a reasonable excuse for his exhaustion, but I knew something was off.  I reiterated that his color had changed and he wasn’t responding to us appropriately.

Dad’s nurse checked his blood pressure and it was dropping very rapidly.  He was going into septic shock, part of sepsis.  She called for the crisis team and they brought the code cart with them.  While my mother and I watched, they injected life saving drugs and slowly brought Dad back.  He was transferred into ICU and kept there for several days.   Mum and I called the priest.

That was the most frightening day of my father’s illness.  Neither he nor our family were ready for him to go, and so he fought valiantly to stay alive.  His infection sapped his strength and he had become bedbound, but he lived for a few more months.   Rapid response of the hospital team brought him back from the brink of death.  Septic shock is a very dangerous medical condition.  Dad’s sepsis symptoms were very subtle, and without my intimate knowledge of my father, and my ability to assess his status as a nurse, his sepsis might not have been caught as early as it was.

This week, the CDC has raised the alert about Sepsis and how important it is for everybody, not just medical people, to know the symptoms.

http://www.cdc.gov/vitalsigns/sepsis/index.html

	Graphic: Healthcare providers are key to preventing infections and illnesses that can lead to sepsis.

 

Everyone should learn the signs of sepsis and be able to detect it in themselves or a loved on.  Sepsis progresses rapidly and it can affect major organs and/or cause death.  Rapid response to Sepsis is the only way to stop it.   It is indeed a race against time.

 

7 years of Patient Safety Advocacy

May 21st, 2016 2 comments

kathyatcdc

What’s different now?  How are we doing?  Have we made progress in Patient Safety?

Its hard to tell. I don’t have sophisticated ways to measure the results of my work.  There is a difference though.  I am received differently than I was 7 years ago.   It will actually be 8 years ago this fall that Dad became infected with MRSA while rehabilitating in his small community hospital.

When I busted onto the scene in 2009 in Augusta Maine to fight for MRSA screening and isolation of patients who are being admitted to Maine Hospitals, I had to get my feet under me.  I didn’t know how politickin’ was done.  I didn’t “know” people.  I was an obscure grandmother, wife, mother, daughter.  I hadn’t worked in nursing for quite a while.  What I did know is that what happened to my father should never, ever happen to anyone.  With that knowledge, and powerful passion fueled by grief, I forged my way.

There was sympathy, and understanding, but there was inconceivable push back.  The greatest push back came from the Maine Hospital Association, their members and even some healthcare professional groups!  That was astounding to me.  I thought we would all be on the same side…the side of the patients.  We all want safe care, don’t we?  Well they want it, but they don’t want it to COST anything.  Cheap or free MRSA prevention would be good for them.  They also wanted it without looking bad for causing infections.   This means that my work could go on  if I didn’t tarnish the polished image of hospitals.  REALLY?

The push back did not deter me. I forged ahead and I still do.

I just got back from the CDC in Atlanta, GA.  This was my third trip.  My first trip in 2010 blew me away.  I was a bit intimidated, because the CDC wrote the bible of infection prevention and that was part of my job as an employee health nurse.  In fact, I was pretty nervous when I called there for expert advice, as a working nurse.  To be a guest there, as part of a larger group of healthcare consumers/patients was a little overwhelming.  I spoke out, but not with a lot of conviction or confidence.  The second time was better.  THIS time…watch out!   I had no qualms about speaking up, and often.  I BELONG there.  My colleagues, each and every one of them affected by healthcare harm related to infections, or medications, were all equally confident, informed and eloquent in their comments, questions and ideas.

The CDC staff that organized our meeting knew exactly what they were doing.  We met on the premise that this would be a discussion.  None of us were rushed through our introductions or our stories.  We each had equal opportunities to offer questions, solutions, and ideas.  Top leadership, including Dr Thomas Frieden, Director of the CDC,  introduced themselves, and briefly talked about their work and programs, and then we talked.  We had a real exchange.

Fresh new ideas around Sepsis, HAI prevention and treatment, Multi drug resistant organisms, Antibiotic use and stewardship, Death Records reform and so many more very important issues in Patient Safety were covered.  I learned so much, but I also brought the nursing perspective.  Programs, mandates, policies and recommendations are essential, but without proper bedside staffing levels in all healthcare settings, they will not work.   We will not get to ZERO infections without adequate  nurse staffing.

There were no commitments made during our meeting, and I do understand that it is not that simple.  But, tons of notes were taken during our conversations.  We also populated large idea boards on the wall.  I look forward to the compilation of all of this material.

Before the meetings, 4 other amazing colleagues were photographed and videotaped for the CDCs blog and other use.  While we waited our turns, a random CDC employee came by asking what we were doing there.  When we told him he said  “oh ya, I had a surgical infection and sepsis too!”  then he shared his story.  This happens everywhere we are.  Everybody has a tragic infection story about themselves, a loved one or a good friend.  We want those stories to go away…we don’t want everyone to have an infection story.

I am grateful for the opportunity to visit the CDC and I look forward to working with them more in the future.

 

 

 

 

Medical Error is the THIRD Leading Cause of Death.

May 8th, 2016 No comments

http://www.pressherald.com/2016/05/07/mainers-call-for-more-data-to-help-prevent-medical-errors/portlandpressarticle

This morning the Portland Press Herald had this article on the front page.  The  high numbers of vulnerable sick and injured patients who die not because of their illness, but because of preventable harm is just not acceptable.  It makes me crazy that  1/4 to 1/2 million people die unnecessarily every year in the US.   Dad died in 2009, after his hospital infected him with MRSA, but he was not counted in any of the voluminous data that I read.   He suffered a great deal and died within several weeks of the infection.

I have worked, as a volunteer, in Maine and nationally since Dad’s death, to help stop this epidemic of needless deaths.  Just last week, on May 4, there was a Patient Safety conference in Augusta Maine sponsored by the Maine Sentinel events team.  I asked several times for the agenda and details for this event, so I could register and attend.  None were sent.  Then I was told that there was such an overwhelming response to this event that it was “sold out”. I could only attend if there was a cancellation.  There were no cancellations.   I was very disappointed because the patient’s voice is essential to any discussions about them or about Patient Safety.  So I asked again for an agenda so I could advise the organizers about where it would be good for them to include the patient’s voice.  None was received.   Since I got nowhere with this, I wrote to the Commissioner of the Department of Health and Human Resources of Maine, and expressed my disappointment that the State would have such a conference without inclusion of the patient’s voice.  I would be very surprised, but pleased to hear back from our Commissioner.

Coincidentally, on May 4, the very day that I was excluded from a Maine Patient Safety conference that was held about an hour away from my home, a reporter from the Portland Press Herald called me because of a recent report from Dr Marty Makary, of Johns Hopkins, that healthcare harm is the third leading cause of death.  This was not news to me, but I was certainly happy to have the opportunity to talk with this bright reporter.  He also sent a photographer to my home and this became a front page article on May 7, today.  I am very grateful to this reporter and his newspaper for recognizing the importance of awareness on this issue.

We all know the old saying “there is more than one way to skin a cat”.   Well apparently, there is more than one way to get the  word out on Medical errors and preventable healthcare harm. I missed the opportunity to bring the patient’s voice to the Patient Safety conference in Augusta, but my voice was shared with thousands of others on the front page of the Portland Press Herald this morning.  Although this is an unpleasant and for some an unpopular subject, all of us, as a society must talk about this openly and often,  and demand better.

 

Advocates campaign for National Patient Safety Board.

July 15th, 2014 5 comments

Weary

October 20th, 2013 2 comments

After 5 years of this work to improve healthcare safety and quality, I have become very  weary. From my perspective, things are not improving very quickly.    It seems I have become a magnet to strangers who have had tragic healthcare harm experiences.  Many of these tragedies involve death and disability.  Here are a few of the recent stories that complete strangers have shared with me in an airport, a hairdressers shop and on the phone.   I am privileged that they trust me with their stories and that they have confidence in me to make a difference.

1.  A woman in her late 40s sat next to me at the DCA (Washington DC) airport.  I offered her a Wet One wipe to clean her hands after she ate a Cinnabon roll, and so the conversation started.  She had mesh implanted for a  prolapsed bladder.  She said  “It has ruined my life”.  She is unable to have sex because of the pain and her husband divorced her.  She makes frequent trips to a GYN office (not the one who did her surgery) for exams and reconstructive surgeries.  That doctor told her that she repairs the many messes that her original doctor makes, but “you didn’t hear that from me” follows her comments.  One doctor will not rat out another. She knows at least 4 other women who had similar surgical mesh outcomes (done by the same doctor) in my region who  would share their stories.  I encouraged her to talk with a local news reporter and I connected her with the reporter and others who can help her and the other victims of this local doctor to share their horrible stories.  They can help to prevent this from happening to other women.

2. A hairdresser in my usual salon approached me when I was getting my hair cut a few weeks ago.  She told me about her 77 year old Aunt, who was still an employed nurse, and who fell and broke her femur recently.  She had surgery in one of my local hospitals.  Within a day or so, she was critically ill with MRSA and sepsis.  That Hospital said they couldn’t give her the care she needed so they transferred her to the other Hospital in town.  She died within one week because of infection/sepsis.  She was infected during her surgery.  Then she told me about her sister.  She had the sling placement surgery for her sagging bladder.  This was done by a GU surgeon.  She had excruciating pain after the surgery and made repeated visits to the Medical center ER for treatment.  She was readmitted several times, but her surgeon kept insisting that there was nothing wrong, and there was no infection and she was discharged each time to suffer more at home.  Her regular family doctor later detected something wrong with her heart. She was referred to a cardiologist, who told her there was nothing wrong with her heart.  Finally she was admitted to the hospital again, in sepsis.  The infection from her sling surgery had become systemic and affected her heart and she died.  This debacle happened over a 3 month period, more than sufficient time for this infection to be diagnosed and treated.    She was 36 years old and left a 4 year old child behind.  Heartbreaking.

3. A retired RN who was an OR nurse in a local hospital, called me after I was in a newspaper article recently.  I had been quoted in the paper about the death of a new Mom who died of necrotizing faciitis within a week of giving birth to her first baby.  This nurse felt a need to tell me about her observations of 2 surgical cases involving NF during her career as a nurse. She described the surgeries to me in detail and they were horrific.  One was a nosocomial (contracted in the hospital) post operative infection and he died.  The other patient was transferred to Boston and he survived. She also told me about how her hospital hired people from a paper mill layoff, who were immediately placed in her OR.  They had no orientation, certification or experience.  They might have been a floor sweeper in the mill before they landed in her OR.  She was ordered to teach them to scrub in.  WHAT??!!  No training, no knowledge of sterile technique, no familiarity with anatomy, instruments etc.  Mill worker to scrub tech with nothing in between.  No wonder people are getting infected in that OR…and who knows what else is happening there.

The pain, grief and suffering at the hands of healthcare providers continues.  In some cases it is repetitive, untethered and unpunished.  It is horrible and unacceptable and although I am weary and disgusted that these things continue to happen,  I know I can never give up.  My heart breaks for these victims and their survivors.  I extremely grateful to  them for trusting me with their stories.

Things that I recognize in these three women’s stories are provider arrogance, dismissal of suffering and pain, lack of respect for patients,  secrecy, protection of one doctor by another,  lack of accountability, missed diagnosis and misdiagnosis, failure to rescue,  failure to fund appropriate safety measures and training, cheap labor,  license to continue doing the same harmful things over and over, no accountability, devalued life.  Where else in society does ongoing harm to human beings,  that sometimes causes death,  go  unreported, unpunished and uncontrolled.  Repetitive harm is criminal.  And those who continue to hide it are complicit in the crimes.

This has to stop.

They called me crazy!

June 19th, 2013 33 comments

I recently ran into a doctor, that I knew during my work on MRSA prevention in 2009.  Well, actually I corralled him in a lobby after he did a presentation at a recent conference I attended.  He remembered me, and he didn’t call on me for Q&A, so I decided not to let him get away with that.  I have never been rude to anyone in my work, but I am certainly determined and honest.

His demeanor has changed drastically from when he testified against the bill I wrote in 2009, to prevent MRSA infections in Maine Hospitals.  I don’t know  if he was afraid of me because I am bigger than him, or if he agreed with others who called me crazy 4 years ago, but I sensed his discomfort while talking with me.    Even so, he was incredibly candid.  He actually told me that “they” called me crazy and they thought I would quit and give up on my endeavor for safer healthcare.  He was a more humble and agreeable man than I remember.  I believe that his personal healthcare experiences with his beloved parents  have changed his tune.  It’s amazing how humbling an experience with healthcare harm can change just about anyone’s perspective on the whole issue.

Imagine…calling me crazy.   Perhaps I was a little crazy.  I was crazy with anger and grief, because a downright dangerous healthcare system killed my father. His infection WAS preventable, but his facility failed him.    I believe that my craziness was justifiable.   My craziness  led to passion and an obsession of sorts.  That passion was to make a change in the lax and cavalier system that allowed this to happen to my father, and as I learned later, hundreds of thousands of others.   Passion led me to others, MRSA activists and experts, the internet, other MRSA victims and their families, legislators here in Maine,  media both written and TV, the Consumers Union Safe Patient Project, Maine Quality Counts, Maine Quality Forum, Maine CDC, CDC headquarters, the Federal DHS HAI stakeholder meetings, speaking and presentation opportunities, conferences, blogging….and on and on it goes.   My trip because of my craziness continues to be amazing.  The most amazing part of this work has been the other “crazy” people I have met.  Some of the most amazing patient safety experts and advocates in the world are on my email list.

Call me crazy, but I’m feeling pretty good about what I am doing….and if it helps to eliminate healthcare harm….we can add craziness to the list of necessary ingredients for success.

 

 

 

 

 

 

Maine Quality Counts Consumer Advisory Council

February 16th, 2013 2 comments

Since April 2012, I have met monthly with other healthcare consumers as part of the Consumer Advisory Council of the Maine Quality Counts organization (MQC CAC).

http://www.mainequalitycounts.org/page/895/who-we-are

In 2009, I was the lone healthcare consumer representative on the Maine Quality Forum Multi Drug Resistant Organism Metrics (MQF MDRO) committee. I was the only uncompensated volunteer. Other members were infection control nurses from Maine Hospitals, an attorney from the Maine Hospital Association, representatives from the Maine Health Data organization and a couple of epidemiologists.   I was there because my father died of hospital acquired MRSA and because of my passion to do stop MRSA infections in Hospitals. My goals were very straight forward and simple.   The committee worked on the legislative rulemaking for our new law to screen all high risk patients in Maine for MRSA.  I had already spent months working with my State representative, other stalwart supporters and MRSA victims to get that law passed.  The monthly  MQF meetings  were brutal.  Without the skilled mediation of our noble physician leader Dr Josh Cutler, the meetings would have been dominated by one physician, who challenged almost everything I said.  In our first meeting, he said the new law was “irrelevant” and that was how we started.    Back then Patients and/or healthcare consumers were rarely represented on healthcare committees and their opinions were generally disregarded.  There was a prevailing attitude that they were doing us a favor.    Suffice to say that healthcare committees were not accustomed to having an educated and  assertive consumer like me in their midst in 2009.  I disrupted their business as usual when I doggedly pursued better outcomes for patients.  MRSA infections certainly should never be accepted as “part of doing Hospital business”.  I remember sitting in those meetings in 2009 and feeling my face grow red and the pressure behind my ears.     I struggled to stay respectful and polite, but I never succumbed to the dominating and paternalistic behavior I was confronted with.   When I left those meetings, I was exhausted and so frustrated.  We never came to consensus.  When we “finished” our work in that  MQF committee, it was far from finished. We had not completed the work of MRSA prevention in Maine  Hospitals, and it still has not been completed.  Because the MDRO metrics  committee was shut down, my consumer “position” was eliminated and I was effectively and efficiently removed from the work.  I have repeatedly expressed an interest (to the powers that be and through the State and  Federal CDC ) in participating in the work on Hospital Acquired Infections in Maine with the Maine Infection Prevention Collaborative, but those requests have not been answered. I often wonder if there is a powerful patient’s voice in those meetings anymore. I also wonder if we have really moved beyond the perception that healthcare consumers are token representatives in healthcare committees.

When I was invited to be part of the MQC CAC my skepticism was well founded…..BUT,  these meetings are a complete turn around from the Maine Quality Forum MDRO metrics committee meetings.   I sit with other Mainers every month who are all working toward the same goals, but from many different organizational perspectives. We are all seeking safer, better, integrated and accessible  healthcare for all Mainers.  Staff of the MQC organization facilitate every meeting, and they do it with great skill, discipline and organization.   Each of the consumers on this council  was recommended by a consumer organization. I was recommended by the Maine People’s Alliance.  Others represent the  Area Agencies on Aging, the AARP, National Alliance of Mental Illness, Univeristy of Maine, NAACP, Deaf Community, The Homeless,  etc.  Each of us have already accomplished great things in our chosen advocacy work and together we are unstoppable.  Our group is making huge accomplishments for Maine patients, and we are giving them a voice!  We are all respectful equals and there are no tokens in this group.    Together we are strong, proactive and progressive.    The combined experiences and accomplishments of the healthcare consumers in our group are unmatchable.  Some of us have begun to share our work and our accomplishments from outside of the MQC circle, with each other inside the MQC circle.   How can it be that I have become part of this wonderful group of generous and brilliant Maine healthcare consumers?  Most  Maine patients will likely never know who we are, but there is no doubt in my mind that they will all benefit from our work.

It is different for me now.  My earlier days of advocacy and activism were more contentious, a struggle and very challenging.  I left meetings exhausted, angry and frustrated.  Now I leave  meetings exhilarated and inspired.   I contribute and share much of what I have learned during my 4 years of activism and advocacy to this group, and so do the others.  This group is a gift and a miracle in my work and my life.

Missing Dad on Thanksgiving

November 23rd, 2012 No comments

Whenever I whip cream or potatoes, I think of Dad.  He was a man who loved to eat!  Potatoes and whipped cream were two favorites.  I stashed a lot of leftover potatoes after our Thanksgiving dinner and thought, if Dad was here, these would not be going back into the fridge.  Family and food were my father’s favorite two things.  When I put leftover whipped potatoes  into the fridge, I asked my mother “Where is Dad when we need him?”

Dad’s suffering after he was infected at his small town hospital was long and difficult.  But, the most difficult thing for my family to witness was his complete loss of  appetite.  For his entire life, he was a hearty eater and loved his food, in  large portions.  He never had a problem with cholesterol, and that was a miracle.  I love to eat too, but I could never imagine packing away meals like he could.  It took him as long to prepare his mound of potatoes as it took for the rest of the family to finish eating.   We all use to laugh about that.  Potatoes, gravy, meat, vegetables….oh, didn’t he love a big meal.  He loved his deserts too, but he also ate fruit and veggies.  I guess there just was not a food he didn’t love.

He wasn’t selfish about his food.  He grew up during the depression and in  poverty.  Rare old photos of him reveal a  thin child dressed in ragged clothing.  Meals were sparse and often meatless.  So, as an adult, he not only relished food, he absolutely loved sharing food.  When any of us said we had enough to eat he would say “Oh come on, have some more!”  This generosity made him feel good I think, and proud that he could provide more then enough food for his family, unlike his parents for him and his siblings.  They squabbled over food. 

I remember when Dad was in the nursing home during his last few weeks of life. My mother and my family were very concerned about his loss of appetite and a lot of weight.  He shared his dreams about food and said he would love some Hersey’s chocolate.  We brought it to him, but he could not eat it.  He gagged on it.  One day he said he thought he could eat a tuna sandwich with onions.  I didn’t want to bother the Nursing Home kitchen with special requests, so I went a got the stuff and made him that sandwich.  Same thing..unable to eat it.  When he couldn’t eat a Maine lobster and butter (his absolute favorite!), we knew the outlook was very bad for Dad.  This  starvation went on for about 3 months.

Aside from the fact that Dad became totally dependant on others for his daily activities and was rendered a bedbound patient overnight because of preventable infection,  this alarming loss of appetite and weight was the absolute hardest thing to watch.  My poor Dad. 

Who knows how long Dad would have lived if he hadn’t been infected with MRSA?  He managed fairly well at home, with my mothers help.  She cooked healthy balanced meals for them every day.  He still drove his car and did a few errands.  They both had visited in my home, 70 miles from their home,  just a week before he fell and broke his ankle, and needed rehabilitation (during which he was infected).    He ate well, he was engaged with all of us and our lives and little kids  loved him and his sense of humor.  He got around. He didn’t move fast, but he did what he needed to do  without assistance. He was upright and mobile, just using his cane.

All of his independence was taken away by preventable infection.  That is just plain wrong and should not have happened.  Although Dad had ongoing health problems, he managed ok before MRSA.  Recently I found myself in a position to tell Dad’s story and describe his condition.   I was asked  if he was frail. I’m not sure how I answered but I have given that some thought.  NO, before MRSA he was not frail.  My perception of a frail person  is someone who is bent over, constantly wobbly on the feet, and always needing assistance to do about anything.   It  took his trusted community hospital less than 2 weeks to drop Dad  dead in his tracks and land him in bed permanently with a multi drug resistant infection. He had clear uninfected lungs when he went into the hospital.  After he was infected, he never walked again.  He lost is appetite, his strength, his ability to stay at home and eventually his life.  It was his  trusted community Hospital and MRSA that turned him into a helpless frail man.  Before that he was living independently with my mother in their own home.  Although he had problems with occasional falls, generally he did ok.  His determination and my mothers dedication kept them both going.

We missed Dad at our Thanksgiving table again this year. 

 Dad, I hope you are upright and strong, surrounded by loving  family,  funny little kids and that they served whipped potatoes and chocolate cream pie where you are now.

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.

My Classmate died of MRSA

May 15th, 2012 3 comments

The 1967 graduating High School Class of Stearns High School, Millinocket, ME  was a very close bunch.  Like all young people, we  each moved on with our lives. Most of us moved “away”, but part of our hearts stayed in Millinocket.  We sometimes lost touch, but a lot of us tried to go to the reunions as often as possible.  I saw my friend Mike Simone just a couple of years ago for the first time in years.  It was like those interim  years never happened. He was such a sweet guy and he loved his hometown and classmates.   We talked about life, his diabetes and old friends.

It was with great sadness I read my classmate’s obituary today.  I just visited with him a little over a month ago.  I was contacted and told by a co- classmate that Mike had MRSA.  This was not good news.  Mike was a big man with a big heart and he had problems with diabetes.  He was considered “high risk” for infections, although it is my belief that infections can be prevented for ALL patients in Hospitals.  It is their job!

Mike had a cardiac valve replacement done last fall. His preoperative MRSA screening test was negative.  He had the heart surgery because he needed a knee replacement and the heart  problem  was fixed to prepare and bolster  him for the second surgery. He told me he never felt right after the heart surgery.   Then several weeks later, when he took off his shoe and sock, there was a tremendous odor. He hadn’t felt pain because he had neuropathy and decreased sensation in his feet.   He  found pus in his sock.  His toe was infected with MRSA.  He was seen by his local doc and Hospital and then transferred to EMMC here in Bangor for further treatment.  He had to get his toe amputated, and the pervasive MRSA infection was also in his blood and in his heart….his newly repaired heart.  This was very serious business for Mike.  His appetite disappeared, he was unable to get out of bed and his strength was gone. The damage to Mike’s body caused by MRSA, and the high powered antibiotics needed to treat it  was much worse than what years of diabetes had done to him.   His treatment at EMMC lasted a few weeks and then he was told “there is nothing more we can do”.  According to his wife Carolyn, his liver and kidneys had begun to fail.  I advised them that perhaps the Joslin Clinic, with their cutting edge diabetes interventions, could help.  Mike just wanted to go home.  He missed his family and  his lifelong community of friends.  His wife said that he already had his finger on the pulse of all ‘goings on’ at his hometown hospital just a day after his transfer back ‘home’.  He saw everyone who roamed the Hospital halls and talked to a lot of them.   He was where he wanted to be. 

I visited Mike just a little over a month ago in our hometown hospital.  I carefully washed my hands and donned gloves and sat with him. We talked again.    His once large arms were skinny and  had wrinkled  sagging skin on them.He couldn’t get out of bed and he was very weak.  He had become a shadow of the Mike I knew.  But,   he was comfortable, and content and glad to be home.  When I asked if there was anything I could do for him, he said  “I don’t think there is much anyone can do for me”.   He had accepted what was coming.  The following was in this morning’s newspaper.

Michael J. Simone, 67, passed away May 13, 2012. A complete obituary will be published in a later edition of the Bangor Daily News. Arrangements are by Lamson Funeral Home, Millinocket. Messages of condolence may be expressed at www.lamsonfh.com.

Published in BDN Maine on May 15, 2012

Mike died on Mother’s Day, May 13.   I am so saddened by this news and for his family.  He died in the same Hospital where my father contracted MRSA.  Today, I grieve Michael Simone and my father, both victims of preventable Healthcare Associated MRSA infections.

My renewed passion to STOP THE INFECTIONS NOW has pulled me back to my blog and other places where I will share Mikes story (with both his permission and his wife’s).  I became part of a 10 member panel to help determine the gaps in MRSA Screening Research.  I will tell about Mike and Dad to the  other 9 members, all with impressive MD resumes and who manage insurance companies, influence  CDC recommendations and teach at medical schools.   I will share these tragedies anywhere, and with whomever I think  can make a difference.  At the end of the month,  I will attend a national conference on the reporting and data of these infections.   Mike’s  infection and my father’s will not be buried  in data. They will be reported in person.

When I visited Mike, I told him that I was sorry this was happening to him.  My heartfelt apology was on my behalf and that of others who really care about stopping infections.   We hadn’t done enough yet to prevent Mike’s infection…it’s time to stop metering out prevention in fits and spurts.  We need to go “ full court press”  to eliminate HAIs.

Addendum.  A few days ago, I spoke with Mike’s widow Carolyn.  She is doing well and taking stock of Mike’s life and healthcare journey.  Like most of us who have had similar experinces,  she is still seeking answers about Mike’s debacle.  She believes that patients are not warned enough about the possibilities of MRSA when they are asked to give consent for the surgery.  She also had great concerns about the lack of education for the patient and their families and visitors about MRSA.  She made a plea to me to get the word out on these concerns.  I made a promise to Carolyn that I would do my best, and spread the word on her requests and concerns.