McCleary MRSA Prevention

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

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

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

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

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

April 18, 2016

I’m sitting in a big hotel in Chicago waiting for my ride on the Go Bus, to O’Hare and then I’ll wait to board my flight home to Bangor, ME.  Flying is hard for me, a 67 year old large woman, because it aggravates my arthritis and edema. When I get home I will be lame and exhausted, and I will need ibuprofen for a few days.

So, why am I here?  You may have guessed that I’m not particularly fond of flying or of the fast life. City life doesn’t appeal to me.  People move much too fast to accomplish the same things we hicks do and they have to fight crowds of people and traffic to do it!  They are fascinating to watch, but I haven’t left this hotel since Thursday evening, which was 4 days ago.

I came for a health care conference, with the Lown Institute, and the Right Care Alliance.

For the past 3 days, I have listened to researchers, doctors, lawyers, patients, nurses, a housing expert, a clergyman, writers, reporters, Healthcare organization leaders, medical and nursing students, and more.  We heard about the many hurdles in healthcare, and in seeking healthcare, and we heard about solutions.  When we met in small and big groups, we talked about our hopes and aspirations for a better health care approach. I hate to use the word system because that is what we have and it ain’t working.

Our fearless leaders Dr Vikas Sanai and Shannon Brownlee got us all wound up.with rallying cries and with real crying with real tears.  For the love of humanity, we have to do this.  We need a revolution.

With so much overuse, underuse, misuse and abuse of healthcare, and so much waste, up to a Trillion dollars a year, how can we go on this way?  Simple answer, we can’t.

The reason for all of my work is Patient Safety and to bring the voice of patients to every meeting and organization that lets me in the door.  The RCA WANTS MY VOICE, but better yet, they want everybody’s voice.  The more the merrier.  The more the better our chances are for a revolution.

I can come up with so many examples of overuse, unnecessary testing, too much medicine prescribed, too many office visits, and stupid routine things done, and all just in my family. I also think about the cost to us. I think of my son who is struggles with medical debt for a necessary knee surgery about 10 years ago while he was uninsured.  I think of my mother who right up until this year, at age of 90, was getting annual mammograms.  She was also getting yearly pap smears, cholesterol tests and ultrasounds on her carotid arteries that she swore she would never get surgery for, and invasive cardiac testing for a faulty valve that she has said she would not get fixed. Medicare will pay for these useless tests every year but not one penny toward her assisted living care for dementia.   Then there is the underuse…that I experienced myself last year when I had a large kidney stone that would not pass on it’s own.  When I needed an X-ray or ultrasound and blood work, I didn’t get it!  It caused temporary harm to my kidney, and unnecessary suffering, and yes, more doctor visits, delays and cost for care that I urgently needed.

The RCA movement aspires to Just Right Care. We want care that is right for the individual, at their stage of life, and for their individual needs, in the right place, at the right time. We want a democratic healthcare approach.   All of us wants and needs that because too many tests and too many medicines and too many procedures can cause harm and cost a fortune.  And all of those tests, procedures, and diagnostics are decided FOR patients by our insurance companies, and our government…. by everybody but us!   We also want a system that is accessible to everyone, from birth to death, and that does not put us at risk for bankruptcy.  A single healthcare encounter has the potential to financially ruin anyone except the very wealthy.

So, this is a rallying call.  To all of my friends and family who agrees with what the RCA and I are trying to do, please visit our webpage, and read the mission, vision and pledge.  http://rightcarealliance.org/  Take a look at the different councils and who is on them.  Consider joining a council and please sign the pledge.  Then follow and/or support the work.

We, the Right Care Alliance, will raise our voices, and cause a ruckus.  We will transform healthcare into something that is safe, high quality, accessible and affordable for all.

Read more…

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.

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.

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.

Every single day, I learn.  I am learning more now than I have in 43 years as an RN, about being a patient.  I have learned how to be a safe. engaged patient, from other patients and from patient safety activists and advocates.  A rare few professional doctor and nurse advocates are stepping forward too, and talking about important patient issues, like safety and good practices.  They discuss the necessary steps to avoid medical harm or infections in healthcare settings.  They talk about how unsafe staffing levels in hospitals and long term care facilities is a contributing factor to patient harm and complications.  Some of my colleagues are engaged more in the issues of healthcare transparency and accountability of both quality and costs.  They fight for affordable healthcare and reporting of all medical harm.  Some even work toward meaningful apologies by professionals and hospitals if harm has occurred.

I have come to realize that I worked for a dysfunctional industry and I was complicit in it.  That makes me feel sad and guilty.  I got coopted by my employers because I needed the paycheck.  I know, that is no excuse, but  I was part of things that I am ashamed of.

Example#1

When I was called “into the office” once and told about a woman who had been harmed when I was a triage nurse one day, I felt absolutely awful.  I remembered her in detail.  I remembered that she was in excruciating pain, and that her primary nurse was snotty to her and made derogatory remarks about her.  I remembered her very concerned and dedicated husband.  I remembered everything, and my first reaction was that I really wanted to talk to that patient.  My instructions were “you do not talk to anybody about this except the legal team.  you do not even talk to your coworkers about this”.  This patient had been harmed during surgery prior to her ER visit and then she was RE harmed in our ER that day.  She nearly died as a result.  A lot of years have passed, but someday I am going to call her and try to talk to her.

Example #2

When I worked in a Hospital employee health department, I got a call one day from the Loss Prevention Director.  He asked me about a SOAP nurses note I had written.  He wanted me to change it.  I believe he wanted that because it would help the Hospital’s case against that employee in a Workman’s Compensation hearing.  I was very proud of myself that day for not cow towing to that man.  I absolutely refused to compromise my professional integrity to “do good” for our employer.  The entire experience disgusted me, but that time I did stand by my patient and my convictions.

Example #3

Way back in my very early days of RN practice, a nurse always assisted the doctor. If  Dr. said jump the nurse asked “how high?”  One doctor I knew was a mean red faced bastard.  He was mean to me, and mean to patients.  He refused to allow any parents into the room when he sutured their children.  One child cried uncontrollably, even with my attempts to comfort him.  The doctor stuffed a wad of gauze sponges into the child’s mouth to silence him.  I was horrified….and I reported him to his superior.  But, I never told the parents.  I was complicit in that abuse, because I was scared out of my mind of this horribly mean doctor.   My fear overcame my moral responsibility to the patient and family.  It is the legal responsibility of all healthcare professionals to report known child abuse.  I was very young, stupid and scared.

I hate that all of this and a whole lot more,  happened during my practice as a nurse.  I have come to know that not all doctors and Hospital leaders are evil, but some are, and  many, if not most see evil every day and they turn away and ignore it.  I did to, and I live every day with that guilt.   The entire practice of nursing and medicine needs to be revamped if patients are ever going to become the priority.  Professional schooling needs to teach ethics, humanity, caring and compassion, instead of elitism and protectionism.

What can I do about it?  I can work my tail off in retirement to make things different for patients….ALL patients.  I can share my professional and personal stories in my writing, my presentations, amongst my friends and colleagues to make a difference.  I feel a burning need to do this…..something like breathing.  If I don’t, how can I ever say that I was/am a nurse?  How can hold my head up and be proud that  I helped thousands of sick vulnerable patients.  Sadly, not all of my patients’ needs were met, and some were even harmed.   I am proud of the good I did for patients, but now it’s time to see about the ones I (and others) have failed……

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.