McCleary MRSA Prevention

Happy Birthday Dad.  Today,  March 17, 2014, you would have been 89.  Imagine that!  I don’t know if you would have lived this long, nobody ever knows.  I do know that your life was cut short by a preventable deadly Hospital infection.  That was not fair to you, and certainly not fair to us, the ones left behind who love you and miss you.

Five years have passed since Dad died.  My observations while I spent time at his bedside, and as he suffered through the life draining Hospital infection MRSA, were that prevention was sadly lacking.  I watched as caregivers used varying levels of precautions….from handwashing, to gloves, to gowns and masks.  Some did it well, some did nothing.  It was mostly the doctors who did nothing….no gloves, didn’t clean the stethoscope, no mask, gloves or gown.  It was ok sometimes because one doctor didn’t even come into the room….he did his routine visit without touching Dad at all…..he stood away from him and asked,  “How ya doing John?”  Apparently that doctor didn’t believe in hands-on medicine.   His approach to infection control was…”I’m keeping my distance and none of this infection for me!!

I grilled his caregivers and the administers of his hospital with questions, both in person and in letters.  None of the responses were productive or complete.  The most important piece of information that my family could have been given should have come the day of admission.  They had an outbreak of MRSA, with 2 deaths just before Dad was admitted that fateful day in September 2008.  Nobody told us that, and he was admitted without true informed consent.  He was placed in a Hospital with an outbreak, and with his health problems, he was ripe for infection.  It’s strange and frightening how a simple ankle fracture can escalate to a deadly MRSA infection in a Hospital setting and in just a few days.  Hospitals are definitely very dangerous places.

A MRSA outbreak, lousy handwashing and precautions compliance, random rooming together of infected or colonized patients with uninfected and vulnerable patients, and failure to escalate prevention steps according to CDC regulations for outbreaks  all led to the infection that took my father away.  And as long as I draw breath myself, I will fight for improvement, not just in that Hospital, but all hospitals.

My mother now lives a very lonely solitary life, alone in the house that she and Dad shared for over half a century.  Her memory is failing,  so she doesn’t recall details about Dad’s illness and death, and that is ok.  Sometimes memory loss is good.  The memories about Dad’s infection and suffering are  very painful.

I will go out somewhere Dad and have a green beer and toast you on your birthday.  You are still very alive in my heart.

Last fall,  I attended a family funeral with my cousins and Aunt.   She lives just down the street from my mother in Millinocket, Maine.  My Uncle and my father both worked at the paper mill there, which was owned by Georgia Pacific at the time of their retirements. Their respective unions negotiated healthcare benefits and they sacrificed other benefits to get great insurance coverage.  When they retired, they and their surviving spouses were promised those benefits for life. In 2005, Koch Industries bought GP.  My aunt told me that their insurance was changing, and that the enrollment had to be completed in the next several weeks.  So much for the excellent comprehensive lifetime benefit.  I’m confidant  that this decision puts more $$$$$$ in the Koch brothers pockets.  But, how does this affect seniors in my mother’s and Aunt’s neighborhood.

Many of these seniors are sick, disabled, and/or they have hearing, cognitive and other problems that makes this change difficult or impossible for them. They needed assistance getting through the insurance exchange process, and some of them have no one to help.   Because many of these surviving wives, including my mother,  had never dealt with insurance, and because it is so complex, I handled this new insurance enrollment for my mother who is 87 years old.  I am her Power of Attorney.  The letters and instructions, booklets, and rules, and so called choices, and all the other ‘stuff’ of insurance started to roll in.  Their old plan through GP was simple, never changed,  required no filling in of forms, and offered a $2 copay for any and all prescriptions.  They had this great coverage for almost 30 years.  The people who are affected by this insurance change  are all in their 80s and 90s.

Herbie Clark, the long time former State Representative for the Millinocket region started hearing about problems that these seniors were having with enrollment.  Then some colleagues at the Area Agency on Aging in Bangor told me that they had received many calls from concerned and confused seniors about this issue.  They tried to get some general  information from GP so they could help the seniors.  They were basically told to butt out and nobody would tell them anything unless they were a retiree or the survivor/beneficiary of one.   Herbie started going to people’s home’s to help them through this exhausting, complex and lengthy process of enrolling.  My mother’s enrollment took me 4.5 hours…and entire afternoon, and it was riddled with errors.  So far, Herbie has helped over 60 seniors get through this  process.   There was so much angst and confusion about this insurance business that I suggested community meetings about it.  Herbie and the AAA arranged the first meetings and I attended (I live 70 miles away).  One was held in Millinocket and one in East Millinocket just 8 miles away.  About 40 seniors showed up.  The AAA gave some great advice about medicare benefits and how their new insurance would work with it and Herbie gave what information he had, but those seniors had questions about Why??  How come a benefit that they had negotiated in good faith and worked and sacrificed for, could just be changed out of the blue like this??  They were angry…so am I!  Rep Mike Michaud’s aide attended this meeting also.  Mike is running for governor this year.

Susan from Mike’s office arranged for a GP rep and and Extend Care (the contracted insurance exchange company)  rep to come to Millinocket for two more meetings in the two communities,  to answer some questions and address problems.  Everyone on the list of beneficiaries was sent a letter about the meeting, but they were told to attend ONLY if they had not yet enrolled. In other words, “don’t come to complain”.  So, attendance was not what it could have been.  There were probably 30 people at the Millinocket meeting and fewer at the East Millinocket meeting.  We asked the tough questions, but nobody answered the question “Why would you change this insurance now, at our age?”  Their weak response was  “We wanted to offer you more choices!”  These seniors made their choice about 30 years ago and they had been perfectly happy with that choice.  Nobody in the room wanted any new choices.   We were told that about 30% of the affected and eligable seniors had not enrolled yet, and this was just a few weeks before the enrollment deadline.  We worried that these seniors would fall through the cracks and asked for a list of those people. We were denied a list because of HIPAA privacy laws.   I wondered how worried those people would be about HIPAA when their insurance is gone.  30% of 600 is 180 people with a benefit worth between $3500 and $4000 per year…that is around $720,000 that GP/Koch can keep if the benefit is not claimed.   I really do wonder how much HIPAA has to do with this decision to not give us names so we could help find and enroll these seniors.

When my father died 5 years ago, he went with the comfort of knowing that my mother had great insurance coverage, a comfortable savings account, and a solid nice  home that she owned outright. He would be livid about this change.  My mother’s first visit to the drug store after her insurance changed shocked her.  Her cortisone nasal spray went from $2 to $95! She left it on the counter, and the concerned pharmacist called me at home.   I was sold a policy that did not cover her medicine, even though they had a list of all her medicines.   Because I got such a run around from Blue Cross about this, the only option was to call her doc and ask for a comparable medicine.  That one cost $11.  My friend Herbie has told me many similar and worse stories.   Many of the seniors who are affected by this change are living on the edge financially.  They are now required to pay a higher copay, or full price for their medicines and they must pay the insurance premiums up front, to be reimbursed down the line.   This may mean financial ruin for these elderly people, or that they will be forced to choose between rent/food/heat and medicine.

This corporate decision and action by Georgia Pacific, owned by Koch, borders on elder abuse.  This is an unforgivable burden placed on elderly people in my hometown and region ……by all appearances,  to make rich people richer.   Unforgivable. 

ADDENDUM:   I wrote this blog in early 2014.  Since then, my mother has had numerous incidents at the Pharmacy including reaching the “donut hole” which I was told would not happen with the plan chose.  An inhaler she uses to keep her from having asthma attacks was not covered and would cost her $150 until her new plan year started.  She didn’t buy it and left it on the counter.  This lead to the pharmacist calling her doctor.  Her doctor then called me concerned about my mother’s memory, which is not good, but she does incredibly well with help from neighbors and my family.  People with dementia need routine and consistency, and this new Koch insurance plan changed everything about her medicines, and did not meet my mother’s needs.  Because of that, her doctor questioned whether my mother should even be driving?  My mothers driving is excellent, as witnessed by me and her neighbors, and she never leaves her tiny community.  All of this discomfort and confusion is just part of the snowball effect of complex, tricky, expensive and NON comprehensive insurance that was forced onto my mother and 599 other northern Maine elders by a remote, detached, cold hearted and greedy corporation.   Again…Unforgivable.

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

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

Who else do we share more secrets or private information with than doctors and Hospitals.  We reveal embarrassing secret details about our bowel movements, urination, sex lives, emotional status, skin rashes, zits, lumps,  bumps, warts, fungi, our weight (probably the most private and difficult one for me) and our own and our family’s entire medical and behavioral health histories.   My goodness…there is little personal stuff that we do not share with our caregivers.  On top of that we give them our protected social security, credit card (sometimes) and insurance numbers.  Fortunately, our bank accounts balances remain secret, but we share what is in the accounts with caregivers. We give them all of our vital statistics and our addresses and place of work, so they can bill us and/ or come after us if we don’t pay.  Then, our providers enter all of our secrets into an electronic medical record (EMR) that we trust will remain secure at the place of care and beyond (think Target hackers!).  There are varying availabilities to us if we want to see what they enter into the EMR, and sometimes we have to pay for a copy of what they write about US.  There are no guarantees that what they have written and shared with us is complete, accurate or has not been changed or redacted when we do get our copy.  At the same time, we are asked to sign papers that give them the right to share our secrets with our insurers so they get paid.   I never really saw a need for that….just send the insurers the bill and they can pay for my visit if it is a covered expense…that is all I want my insurance company to do for me, and know about me.  I really don’t want them in on my secrets or controlling what my doctor can or cannot offer me. I pay them, and they pay my provider..period.   In Maine, the most amazing thing is that we don’t sign anything before our secrets and EMRs are shared with data depositories.   Some of it is de identified (Maine Health Data Organization) and some of it is not.  We only sign papers if we REFUSE to share our private information with the largest (for profit)  health information depository in Maine. That HI company turned the consent process ass end to….just to make things a little more confusing for us to understand what happens to our secrets.  They came up with a REFUSAL to CONSENT form.  I wonder how many Mainers realize that their very secret stuff from their electronic medical records with identifying information is being shared.  There are potential advantages to this when it comes to coordinating our care. Our providers who are part of the big Health information system can access our medical records, but ironically we patients cannot!  So, there is no way for us to assess if the secrets in our complete records are, first of all, OUR secrets and not someone else’s secrets, or if they are accurate, unless we do it through our doctor’s office or Hospital.   And, what else are our secrets being used for?  Is somebody making a ton of money on all that data collecting and by sharing OUR most personal secrets?

There is a Health Information Protection Act  that is supposed to protect our privacy, but who does it really protect?  We trust our providers to keep our very private stuff private, and we do this willingly so we can get the professional and personalized patient centered health care that we need.  There are some things that my healthcare people know about me that I would not want shared with anyone else…it is a huge deal.  Beyond information, our doctors also get to see, palpate and probe our secret private parts that nobody else ever gets to see our touch.   How many have had anyone but a doctor look at their cervix? Their colons?  Even our most intimate partners or spouses have not seen those things (not that they would want to)..those deeply hidden and private parts of ours.    Ultimately and beyond all else, we trust our providers with our lives, particularly when we face a serious emergency, illness or surgery with anesthesia.   This is by far the greatest trust there is.  And we sometimes give all of that trust over to complete strangers, who may have frightening secrets of their own!  Think about your first visit to a new doctor….Do you ever think during an appointment and exam “who are you, why are you asking me all these questions,  and why are you doing looking up there and touching that??”  Is the entire process of choosing a provider a crap shoot, because we do not know their secrets?   How much can we really find out about our doctors, or Hospitals, or other caregivers before they hear, see and touch and then share our most secret things?

How many secrets do they share with us?

What if…

1. Every Hospital had current up to date report cards?  Real ones with a genuine grading system.  They could be graded on things like HAIs, unanticipated deaths, readmission rates, medical/surgical errors and complications, Patient satisfaction, handwashing compliance rate and nurse to patient ratios.  A link to any State or Federal regulatory disciplines would be also be displayed. These report cards could be displayed on a digital display or TV monitor in the Hospital lobby, and on their website.  Then I would know their (quality) secrets, just like they know mine.  All we see on webpages now are awards that our providers have received.  I’d rather know about their actual healthcare outcomes.  And if I have a specific problem, I would want access to information specific to my problem.
2. Doctors had report cards too?  The grades would include details about licensing agency disciplines in my state and any other State, lawsuits and settlements.  Whew…that’s a lot of secrets.
3. All of our own personal protected and secret data is available to us by clicking a simple button (blue button) online or with a quick phone call/request to the depository that holds it.  That way we could access it on our own tech devices if we have them.  Since so much of the time with my caregiver (every minute compensated for by me or my insurer) is spent with them entering stuff into my EMR,  instead of comforting me, caring for, talking with and educating ME,  at the very least, I should be able to see what the heck they are typing about me.
4. Contact information for on call Hospital leadership displayed on patient room tv monitors.  Oh my!  Doctors should provide emergency contact information to patients as well. ….no more secrets!   No more relying on the goodness of my nurse to contact my provider in case of emergency or status change.  Don’t cut off those lifelines just because I am in the Hospital.
5. They always accommodated my care partner/advocate with comfortable seating/or sleeping place, and they would be allowed in on my secrets.
6. When something goes wrong, I am told about it immediately and I am supported and included throughout the process that follows. I would be regularly updated  on  any root cause analysis or investigation.  No more secret exclusive internal investigations.
7. All providers publicly reported all adverse events, and HAIs accurately, so that we consumers knew the real extent of their excellence (or lack of).
8. Patients were educated thoroughly about possible complications of procedures that are recommended and told if they are absolutely essential for the treatment of their problems.    This is true “informed consent”
9. Hospitals and Doctors make a price lists of everything.  If they can charge it, they can list it.   You voluntarily tell me as exactly as possible how much my care will cost, so I am not blown away by an outrageous bill that I had no idea in God’s world I would get.   That secret is downright evil. An unexpectedly HIGH medical bill may determine if or when I will sink or swim financially.   It is always horrible to learn about a secret that could cost you your home.
10. My proxy or I could take video of anything I want that involves my care.
11. Nothing is discussed about me without me and/or my care partner.
12. Providers and Hospitals would reveal if they are being compensated by Pharma or Medical Device Companies for any reason like trials or to promote their products, particularly products they recommend for me.  This would include any relationships with medical equipment companies, such as surgical robots, medical monitoring devices, etc.
13. Providers and Hospitals would only implant medical devices that are absolutely proven safe and carry warranties.
14. Hospitals would tell us ahead of time that they will not charge patients for preventable healthcare harm, example: contracting an infection while hospitalized. This would be a guarantee of sorts, that we would get safe, high quality care, and if we did not, we would not be paying for harm because of substandard care.
15. Providers and Hospitals would practice Truth in Advertising and list all of the risks for whatever procedure they are promoting in newspapers and on TV.  Better yet, they would skip the advertising altogether and spend that money on keeping me safe when I am in the Hospital.

Let’s all be adults about healthcare.  No more patronizing.   No more underestimating my intelligence and ability to understand your special stuff…..that is just an excuse for you to keep secrets.     Let’s drop the veil of secrecy that forces patients to rely on gossip and guesses for our most important healthcare provider information.    There is no place for secrets in healthcare.

I want complete transparency, and accountability in my healthcare and from my providers.  In return, I will trust you with my secrets, my money, and (most importantly) my life and the lives of my loved ones.

I prefer not to partner with anyone when there is no mutual secret sharing and trust.

Definition of Pontification from the Urban Dictionary

http://www.urbandictionary.com/define.php?term=pontification

The act of speaking out for the purpose of hearing oneself speak.
Posturing…speaking to people that don’t really care what you say one way or another since you’re speaking solely to front yourself as “someone in charge”.
Speech or written communication that is generally pointless except to cast favorable light upon the speaker or author as if the message were a pronouncement from on high.

Usually full of shit.

As those who know me have observed, I am spending a lot of my time at conferences these days.  The topic is always pertinent to Patient Safety, because that has become my true calling.  I am finally confident enough to speak up at these conferences and meetings.  It took me a while to get to this point, because I was angry, grieving and skeptical and I might have come across as whiny or mean.    But, most of all, I never wanted anyone to call me a windbag.

We all know wind bags.  But, no profession is any better at being WBs than doctors.  Please do not get me wrong.  I know, respect and honor many doctors and many of them are my friends and colleagues.  I have learned so much from doctors, and a few have given me excellent treatment and care.  I am not casting a big net here when I say that some doctors are the biggest windbags I have ever met, and they have really honed their skills at their windbaggery.

Example.  When I attend conferences, I consider myself an equal with all of the other attendees and presenters.  I may not have the titles and letters behind my name or the years of education, but I wouldn’t be there if the conference organizers and I didn’t think I had something to offer.  It has taken me a long time to build my experience, education and passion to a point where I feel like I can make a contribution in the form of comments and questions, and sometimes as a speaker or part of a panel presentation.   When I started my advocacy for Patient Safety 5 years ago, I barely said anything in my meetings.  Now I do, and I want to, but I honestly do try to hold and organize my thoughts and I politely wait my turn.  And I do not go on and on and on and on, with what I have to say.  I try to sound intelligent, respectful and sometimes humorous and to make my message important and brief.    When I know that there are several other people behind me waiting for their turn at the microphone, I keep it brief.

Now Doctors….that is another story.  Some doctors are just fine…they introduce themselves as a doctor, say where they work and go on with their brief comment or question.  These brilliant doctors can often say so much in such a short time that I know I MUST pay close attention.

MDWBs are a different story. ( Medical Doctor Wind Bags).   I recently listened to one like that.  He was about my age, quite heavy, very imposing and extremely long winded.  He spent the first 5 minutes at the mike listing his titles, his jobs, his schools, his professional accomplishments, and his IMPORTANCE!   This pontification of HIMSELF made me bite my tongue, and gave me heartburn.  Then after that 5 minutes he launched into his comment.  He had no questions for the presenters…he just wanted to be sure he had HIS comments heard.  I lost interest after he listed his first several titles, and I remember very little of what he had to say.  He conducted this boring self-portrait and comment while at least a half dozen other attendees waited behind him for their turn to comment  ….he had no regard for anyone except himself. I did not get to make my comment on that particular presentation and neither did about 6 others, because this doctor was so long winded.   That kind of ego and arrogance  can actually get a doctor into trouble in his/her practice.

When I described this experience to my lifelong friend Charlotte, she said that these meetings ought to have a GONG!  HA…what a great idea.  I honestly think I will suggest this to the organizers of the event I just attended.

Another example of MD Windbaggery in these meetings is when we have workshops with doctors.  We are all equals in those workshops.  We all start out politely, and with respect for each other and our time, and we raise our hands to be called on in order.  Then one long winded doctor speaks, and another doctor feels the need to respond out of turn, and all of a sudden, it is a doctor to doctor conversation, and the rest of us, who politely hold up our hands to be called on, are left out.  A woman sitting next to me at my most recent conference (also a patient advocate) said  “I’m deflated”, and she put her hand down.   Disgusting.  When I had about lost my patience with this arrogance and rudeness, I whispered in our meeting facilitator’s ear that my hand had been up for a really long time.

So, my suggestion for a solution to this windbaggery and pontification is a GONG…..or maybe a little bell or gavel,  and time limits for every single comment or question……including those of DOCTORS.

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.

On September 13, 2013, I was recognized  for my work  by the Maine Patient Safety Academy.   It was their inaugural  award ceremony and I am extremely humbled and proud  to have been chosen for this award.  I was in the company of  a nurse from Maine Medical Center who dropped the CLABI rate to ZERO in her NICU and  a doctor whose serious determination, dedication and teaching has made patients at MMC and all over the State of Maine safer.

Maine Patient Safety Academy, Rising Tide Award

I am very grateful for this recognition from the PSA and to the people who nominated me for this award.

I remember the first time I attended the PSA.  3 years ago, I walked into the event, alone, and not knowing anyone.  I had been working hard at that time on MRSA prevention in Maine and on the national level.  I knew that many  in the Maine Hospital community were against what I proposed for the State,  Active Detection and Isolation for the prevention of MRSA in Maine Hospitals.  I am still a firm believer in that approach to MRSA prevention.  Not knowing who was at the event, except for Judy Tupper, the organizer of the event, I felt a little skeptical and nervous.  At the same time I knew I had to broaden my knowledge base and collaborate with others who are doing the work.    During my attendance,  I learned about the work that dedicated professionals were doing in my own State.  I was so impressed with this energetic conference, that I promoted it to my national group of Patient Safety Advocates with the Consumers Union Safe Patient Project.  By the following year, the CU  had formed a sub group called NEVER, or Northeast Voices for Error Reduction.   This smaller group joined me at 2012 at the Maine PSA!  I was so proud and excited to welcome them to Maine and to introduce them to some of the Patient Safety work that Maine was doing.  Three of us did a co presentation on Patient Safety as a break out session.  Inclusion of healthcare consumers and the Patient’s voice was a significant gesture of the PSA.

I continued to work doggedly for the past year.  I attended, helped to plan and participated in conferences here in Maine and nationwide.  This year when I attended the PSA, I knew a lot of the attendees, and even the keynote speaker.  I  met him at the Institute of Medicine event I attended last spring, and he  remembered me and came up to me to chat!  He is a wonderful young ER doc from Boston.  He and I share  similar tragic healthcare experiences with a parent.     My new participation in the Maine Quality Counts Consumer Advisory Council has opened even more doors for me to bring my ideas and the patient’s voice to healthcare reform in my State.  I also continue to advocate for individual patients, which is my most gratifying work of all.    More recently, I have reached out to my own city’s healthcare leadership to field the possibility of forming a Patient and Family Advisory Council in our community.

I don’t have a guidebook to do this work, but my path  becomes clearer as I go along.  My goals never change… they are accessible and affordable, safer, infection free care for all and inclusion of the patient’s voice in all levels of healthcare decision making.    I feel more comfortable in my own skin every time I go to another conference, event or meeting.

I have my beautiful award prominently displayed on my living room mantle.  I will bring it to my MQC Consumer Advisory Council meeting on Sept 20, 2013 and proudly share it with my consumer colleagues there.  But, I will not allow my head to swell, and I will keep my feet firmly planted on the ground and keep plugging away to make patients safer.

Heather Nichols

In mid August,  on the front page of the Bangor Daily News, I saw a stricken, young and vulnerable new Dad holding his beautiful new baby girl.  The story was about Heather Nichols, a first time Mom, who contracted Flesh Eating bacteria or Necrotizing Faciitis, after an episiotomy during delivery of her daughter.  One week after delivery, she died.  The few days leading to Heather’s death brought suffering and pain that nobody should have to endure.  This shouldn’t happen to anyone.

http://bangordailynews.com/slideshow/bangor-man-warns-of-rare-flesh-eating-infection-that-killed-his-wife-days-after-childbirth/?ref=comments

http://bangordailynews.com/2013/08/15/health/a-look-at-hospital-infections-after-young-bangor-mothers-death/?ref=search

This tragedy brings tears to my eyes every time I hear or think about it.  Matt Nichols carried out his TV and newspaper interviews one day after his wife’s funeral.  He did it to raise awareness in the community about this horrible infection and how it can kills otherwise healthy young people, more specifically, his beloved wife.  His generosity and concern for the community astounds me.

How did this happen? Who is going to answer the hundreds of questions that Matt and his family have?  Who is going to answer this community’s questions? EMMC, the hospital where Healther delivered her baby and later died, hasn’t answered anything yet.  The shroud of secrecy has fallen.  Rather than secrecy, the better path is to join with the family and  community, and use this horrible tragedy as a way to educate everyone about these serious infections and ways to prevent them.  The Hospital would do well to follow Matt Nichol’s lead on fostering awareness.

Matt Nichols, his infant daughter, his family and this community  deserves answers.

1. Why is there only an internal investigation?

2. Is the Maine CDC or some other unbiased regulatory agency involved?

3. Where did this infection come from?

4. Could it have come from a contaminated environment, unsterile instruments, or poor sterile technique?

5. Could pre-delivery screening and decolonization for Strep A have helped, or could simple bathing with anti bacterial soap have helped?

6. Is Home delivery a safer alternative, and is episiotomy absolutely necessary?

7. Did caregivers miss early signs of infection?

8. Did Heather Nichols get the RIGHT CARE, at the RIGHT PLACE, at the RIGHT TIME?

9. Would Hyperbaric treatments have helped?

10. Has this tragic infection and death been reported to the Maine or National CDC, the Maine DHHS, the Joint Commission or other regulatory/oversight agencies?

11. Why isn’t  this tragedy being used as an educational opportunity for everyone, including EMMC staff?

12. Where is the transparency and accountability?

13. Were there enough qualified nurses on duty when Heather was a patient there (ie. appropriate nurse to patient ratios)

14. How many others have become infected while staying at EMMC (and other Maine Hospitals), with Necrotizing Faciitis, MRSA, C Diff  or other deadly infections?

15. How many have died because of infections contracted at EMMC, and other Maine Hospitals?

16. How many have become disabled,  maimed or disfigured by infections that were contracted at EMMC and other Maine Hospitals?

17. Why is there no detailed quality information on the Hospital website?

18. How can I learn detailed and real time facts  about Hospital and provider quality and safety when I am shopping here in Maine,  for healthcare services?  Existing public information is superficial and incomplete.

19. Would a community Patient and Family Advisory Council help to make patients safer, and to make healthcare more transparent?

20. How can we all (patients, families and caregivers) work together to make infections like Heather’s a thing of the past?

I had a lot of these same questions almost 5 years ago when my father contracted MRSA  (Methicillin Resistant Staph Aureus) at his community Hospital.  He died as a result.  My father’s preventable infection and death ignited a passion in me and I have worked as a volunteer Patient Safety Advocate and Activist since then.  There has been some progress in preventing some infections and in patient safety, but it obviously isn’t enough and it certainly is not fast enough. We shouldn’t have to ask the same questions today, that I asked 5 years ago.

I live in Bangor, ME.  EMMC is my hospital of choice.  I worked there for a total of around 20 years, off and on.  Many colleagues and friends continue to work there.  I know their dedication and also their grief and pain when something this tragic happens.  But, secrecy and image control are not the way to handle horrific outcomes like Heather’s.  Learning the “truth”  through Hospital gossip that leaks into the community is not acceptable and it is also a violation of the family’s right to privacy. Matt Nichols and his family get to decide what information will be shared and what will not,  but as far as I know,  they are not privy to the actual facts around Heather’s case.    Bringing in the family, listening to them, answering their questions, involving them in the investigation of the event, and being transparent are the only ways to handle this.  EMMC will never have a complete investigation until they ask the family what their observations were. Patients and families deserve the right to share what they heard, saw and went through.    EMMC has gone secret and silent…and that fosters distrust.  Struggling and grieving  families sue Hospitals when they don’t get the answers and other support that they need during their time of need.

We, as patients and families, must use our voices  to shine a light on the dark problem of healthcare harm and lack of transparency and accountability.  My place at the table with the new Maine Quality Forum Healthcare Associated Infections council gives me an opportunity to represent healthcare consumers and to invite and inform patients and their families to come and speak out during public comments.  Then next meeting is September 23, 9am at 211 Water Street in Augusta (Dirigo Health building).  Please come with your questions and concerns.  If you can’t make it, email me at kathydayrn@aol.com.

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.

This past week, I got an email from my independent doctor saying that she is going to close her practice.  Darn.  I have gone to her for about 10 years and I am pretty settled in.  I only had to get on her case a few times and she was pretty responsive to my ideas and complaints.  I wasn’t a whiner, but I never hesitated to pursue an issue with her.    So, after my July annual exam, I will be shopping for a new doctor.  Fortunately, I will be able to take my time, because generally, I am pretty healthy and I don’t deal with ongoing chronic health problems (well, except for excess weight).

Yesterday I was part of a “patient panel” at the Maine Quality Counts educational session for 75 Patient Centered Medical Homes.  Most of them were brand new to the PCMH brand and ideology. The model for PCMHs  includes Patient and Family Advisory councils for each practice.    This was the 3rd time that MQC has asked me to be part of a panel, so I am getting more comfortable with it as I go along.  3 other brilliant and engaged patients/consumers were also on the panel.  Our moderator was Bev Johnson, CEO of the Institute of Patient and Family Centered Care.  My only discomfort with being part of this panel was that I didn’t feel that I was prepared very well and didn’t really know what was expected of me.  The four of us met with Bev before the panel discussion, and she didn’t tell us what to do.  She gave us a simple format and the rest was up to us.  OK…I can handle that.  Bev is all about Patient Centeredness, and that must be what it is like to be in a practice or Hospital that embraces that concept.  The voice of the patient is wanted and necessary and the patients are  highly respected and honored.  Bev is such a wonderful, gentle teacher and so highly regarded for her work, and I completely understand why.

So, each of us patients introduced ourselves and told our stories of Patient engagement.  I was stunned by the powerful stories of the others on the panel. Amazing really!  When I finished my story about becoming engaged before my hysterectomy for uterine cancer in 2011, I added a little zest.

I told the audience…almost all of them providers…that I was not part of a PCMH, and in fact my independent doctor was shutting down her practice and I wasn’t a patient of anyone.  I said I lived in Bangor, on Pearl St, and that  I was up for bids!!   It was perhaps the lightest moment of the day….and the entire group cracked up.  BUT, surprisingly 2 Bangor PCMH practices bid on me.   That was so funny…   I told them if I chose one of their practices that I would help them with their Patient and Family Advisory council.   The one thing that occurred to me after I got home was that I didn’t make a choice after their bids.  Maybe I should have politely told them  “I’m sorry, but although my doctor is closing her practice, I will not be accepting new doctors at this time”.  Talk about turning the tables!  Patients hear that a lot…”Dr X is not accepting patients at this time”.  I spent 10 years in my previous practice under the care of a very young PA waiting to become a patient of the practice’s doctor.  When that PA told me she was leaving and I would get yet another very young, inexperienced PA, I asked again about becoming a patient of the doctor who co-ran the practice with her husband.  Again, I was told…”she isn’t taking any new patients”.  My arguments about being a patient there for 10 years didn’t pan out, so I found the newer doc….who is now shutting down her practice.

All joking aside, when patients lose their regular doctor for any reason, it is a big deal.  The established relationships, trust and the comfort that comes with a long time provider is gone, and we, the patients, are burdened with the chore of finding someone new.  There is nothing like the trust we put in our regular doctors….just think about it.   We engage with them on our  journey of staying well or attaining wellness. That patient/provider partnership is the key to success.  So, finding a new doc to fill an old doc’s shoes is a daunting proposition.  I will find one, but I will take my time and do some asking around and quality and review checking online.

In the meantime, I will keep those two practices in mind, because they were brave enough and interested enough to actually  bid on ME!!