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Posts Tagged ‘HAI’

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.

 

 

 

 

Are Hospital Slippers a source of infection?

May 25th, 2015 1 comment

trackingdirtI recently underwent an emergency ureteral stent placement at Eastern Maine Medical Center here in Bangor, Maine.  My care and my outcome have been excellent.

But

I felt like a hawkeye during my care.  Although I knew some of the nurses and I appreciated everyone’s  kindness and skills, I did not appreciate the dirty floor that I walked across in my Pre Anesthesia cubicle.  The floor had some sort of spill on it and I commented.  I mentioned that I am a stickler for infection prevention because I lost my father to a hospital acquired infection.   The nurse said the floor was stained, which I found unlikely since it was tile.  What REALLY bothered me was that after I walked across whatever had spilled on that floor, I got onto my stretcher and swung my feet up with whatever crud I had picked up on that floor.  YUK!

I gave that some thought.  When I was asked to undress, I removed everything and donned a jonny, pants and hospital slippers…like footies with non slip stuff on the bottom.  Then I was escorted to the Pre anesthesia area, about 50 feet away…through a hallway and a couple of doors to my cubicle with the dirty floor.
So, I picked up whatever was on that floor all the way to my stretcher.

When I lifted my feet and slippers onto the stretcher, my stretcher was automatically contaminated.  Then….to add more concern, I wore those same slippers with whatever living organisms were on them, when I transferred onto the OR table.  The slippers were never removed until I dressed to go home.

I have an idea.  Why not let the patients wear their own shoes until it is time to get onto the stretcher, then put the new clean slippers on….OR, change the contaminated slippers before the feet are lifted up onto the stretcher?

This could be a simple precaution to prevent awful HAIs and Surgical site infections.

Being mindful of what is brought onto our beds or stretchers as patients is so important.  Sometimes it only takes a simple fix to help prevent infections.    I sent off an email to my Infection Control nurse friend at EMMC.  Maybe we can change one small thing to reduce HAIs.

And maybe, just maybe EMMC should invest more into cleaning those cruddy floors!!  Housekeepers are an essential part of the Infection prevention team.

What they say after they hurt you

February 17th, 2014 12 comments

doctorexpounding

 

 

 

In my work as a Patient Safety Advocate, and as the survivor of a harmed patient, I have heard many things that patients and families are told when things go wrong.  This is just a starter list.   I want friends and colleagues to add to it.  It seems that many of us have been on the receiving end of a widely used script that is used when bad things happen in Hospitals.

1. We did every thing we could.   (really?  When, before the harm or after?)

2. These things happen all the time.  (not to me or my family they don’t)

3. This is a very rare event.  (What about my aunt, and my classmate and my next door neighbor?)

3. There really isn’t much we can do about it.  (then, this must be your  way of doing business)

4. That is your perception of what happened and not necessarily what actually did happen.    (I saw it happen!)

5. We have met the accepted Standards of care.  (Honestly?  Then how come my loved one walked in with a minor problem a week ago and ended up sicker, with an unrelated problem?  I’d suggest changing your Standards of Care.)

6. You have an infection.  (what kind of infection? is it catching? is it curable?  will I be affected by this or disabled by it? how do I protect my family against it?)

7. You most likely carried that infection into the Hospital with you.  (Then I must have carried it around at home too.  Why didn’t I get an infection at home  and why didn’t my family get it too?)

8.  Just leave it to us, we will take care of everything.  (I already tried that)

8. You haven’t been a compliant patient and that probably contributed to the problem. (Seriously?  Just because I didn’t “obey” your commands, I got this horrible condition that is completely unrelated to what I came into the hospital for?  Are you blaming me for a problem that you caused?)

9. You knew that this complication could happen,  because you signed an informed consent.   ( You never once told me that I could become disabled or die from this procedure. My consent for treatment form was handed to me when I was medicated and scared, so I did not have the opportunity to look it over carefully before I signed.)

10.  Of course we expect you to pay for the treatment necessary after your complications.  (You infected me and now I am supposed to pay a thousand dollars a pop for an IV antibiotic??)

11. Oh, you are losing your home because you can no longer work and your bills are so high?  We are so sorry to hear that.  (No you are not!  I became disabled because of dangerous harmful hospital care and then you sicced  your collection agency on me when I couldn’t pay the bills for lousy care!)

12. You are overreacting.  (no, I am not.  My loved one is not doing well and you and your staff are not paying attention to him/her.  I know him/her better than you do)

13. Perhaps you should consider comfort care.  (he just took a turn for the worst this minute and you us to give up hope right now?)

14. If you do what your doctor tells you to do, you will be fine.  (Funny how many people do that, and more. But they are still harmed by their healthcare.)

15. At least his death was peaceful.  (He has spent the last several weeks losing weight, unable to do anything or walk, getting bedsores,  and isolated in this room because his hospital infected him….you think that was peaceful for him?  He mourned the loss of independence and inability to live with beloved wife for the past several weeks,)

16. Oh, but that IS the complete health record.  (Where is the information about when you operated on the wrong site? or the hospital acquired infection? or when he/she was given the wrong medicine? or when he/she fell out of bed and broke an arm?)

17. The family is being difficult.  (It might be  because nobody is paying attention to their concerns, or their right to safe high quality care and to advocate for their loved one)

18. We will do an internal investigation and a Root Cause Analysis.  (What part to I get to play in your investigation, and when do I get the answers I deserve?)

A colleague mentioned that I should add  “Nothing” to this list of what providers say….Providers sometimes respond to our questions with silence…no answers at all.  No responses to emails, letters or phone calls.   Ignoring the harm does not make it go away.

Another said this

“I was told it was my fault my father died because I was the one who put him in a nursing home for rehab, rehab that his primary care insisted on. The administrator who told me this somehow forgot to tell me they had drugged my dad with antipsychotic drugs which led to deadly side effects, dehydration, kidney failure, falls AND a MRSA infection. The administrator actually told me that I should have known all this would happen.”

Let’s all add to this list of things that providers/Hospitals  tell us when things go wrong.

 

 

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.

 

 

 

 

 

 

Institute of Patient and Family Centered Care

April 20th, 2013 No comments

From April 14 to April 18, I attended the Institute of Patient and Family Centered Care intensive training course.  I was alerted to this conference by my colleague Lisa Freeman.  I was unfamiliar with this approach to healthcare, but I had attended a very nice presentation by Bev Johnson, Director , for the Patient Centered Medical Home practices here in Maine.  She is a brilliant and kind teacher.  She recognizes that Patients and their families must partner  with providers to improve healthcare.   So, I knew that at least Bev’s involvement in this organization would make this training worthwhile.

I have been involved in Patient safety advocacy and activism for over 4 years now.  I belong to and affiliate with different organizations and I attend meetings, conferences, online webinars, phone conference calls, PLUS, I read everything I can get my hands on about Patient Safety.  The solutions are out there to make healthcare safer, better, and cheaper.  I know the problems and the negatives in Healthcare, but I also know that healthcare can be an miraculous cure for what ails you.  I have definite ideas about solutions for problems, but the quandary has always been…How do we get there?

The IPFCC training taught me how.  We include patients and families in every aspect of care, from the primary care office through discharge from the Hospital and into post Hospital care, whether it is in LTC, rehab, or at home.   Partnering WITH patients through out the journey of care is absolutely essential.  Patient and family advisory councils at every level are necessary.   TOs and FORs are removed from conversations regarding patients and families and in their place we put WITH.

I was skeptical.  What exactly is accomplished when providers partner with patients and honor them and their families? These are the measurable improvements that I heard about this week.

1. Reduction in HAIs (my initial reason and primary focus for doing this work!)

2. Reduction of medication and medical errors

3. Reduction of Hospital readmissions

4. Improvement of HCAPS numbers, improved Patient Satisfaction

5. Improvement of Healthcare outcomes.

6. Reductions of costs.

7. Elimination of Visiting Hours.   Family members are partners, not visitors.  Ability of all patients to have a 24 hours bedside advocate.

8. Increased honor and respect of patients and patient dignity.

9. Improved employee satisfaction and improved employee retention.

10. Patient Portals to Electronic Records and how to use them.

11. Addresses all 3 arms of the IHI Triple Aim.

This is the short list.  I heard stories of success, from patients and patient advisers,  and from Hospital administrators, providers and workers.  I learned that this work is not easy, but it is worth every minute of effort.    It is an approach that is inclusive of everyone involved and affected by healthcare  in a collaborative partnership.

Now what?  I plan to tell my colleagues at the Maine Quality Counts Consumer Advisory Council about my training.  I hope to mobilize them and MQC to do a survey of Maine Hospitals and to assess where Maine is at in PFCC. How many Patient and Family Advisory councils do we have in Maine, and are they honored, valued and included in the work of caring for patients?   Then we will go from there.  I has to happen.  I hope that it will happen very soon.  We need the change. We need to do whatever it takes to make patients safer, control costs, and preserve our ability to access care.

Last week I attended the Maine Quality Counts annual conference about achieving the Triple Aim in Maine.  This week I connected some big ole dots on how to do the work.

 

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.

Is Healthcare Harm a Misadventure or a choice?

December 31st, 2012 1 comment

As a nurse, a patient and a consumer, I know I have to make wise choices for my Health and my healthcare.  Last year, I had to choose the best doctor and best Hospital for my cancer surgery.  It was no small task.  I also had to choose a healthy approach to my surgery.  I drank more water for several days, ate iron rich foods, exercised more (better late than never), clipped and scrubbed under my nails and did antiseptic showers each of the 3 days up and to the day of surgery.  I had a stellar healthcare outcome.  Since my surgery, I have made even more choices to be healthier, like going on a weight loss diet and moving more.  Although I stumbled a bit with this effort over the Holidays, I will continue in the New Year to lose excess weight.  That chore will be accomplished by even more choices…choosing healthier foods, less sugar and fat, and more protein, fruits and vegetables.

I believe I am making a lot of the right choices for myself.

Are Hospitals making the right choices for patients?

It’s all about choices isn’t it?

When a Hospital chooses not to invest in patient safety and infection control programs and practices that are known to work, patients suffer.

When they choose to chronically under staff, and patients are not getting the direct care they need when they need it, patients suffer.

When they fail to coordinate admissions and keep infected or colonized patients separate from unaffected patients, patients suffer.

When a direct caregiver chooses not wash their hands before patient contact, or chooses not to use the 5 rights of medication administration,  or chooses not to use a check list or a time out prior to surgery or other medical procedures, patients suffer.

This is a short list of choices that are made by Hospitals and caregivers every day.  So, when I heard recently that medical harm is called a “misadventure” by the Centers for Medicare and Medicaid, I was dumbfounded.    Healthcare is not an adventure or a fairy tale.  Illness and injuries are a brutal reality for human beings.  None of us choose to be sick.

My colleagues in Patient Safety have treaded lightly when talking about medical harm, errors and infections.  None of us believe that these things are deliberate or intentional.  We do however believe that most healthcare harm is preventable. Errors and infections that occur over and over are no longer errors. They continue to occur because poor or inadequate preventative choices have been made.    Patients suffer every day because of healthcare harm, and I believe that much of that harm is because of poor choices.   Choices are made every day in Hospitals and other healthcare settings that can cause preventable harm to patients and unnecessary suffering.

Let’s all work together to make  better Patient Safety choices in 2013.

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.

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.