McCleary MRSA Prevention

People ask me what I would do to help stop Hospital acquired infections. It’s been 10 years today since my father died of HAI. Right after he was infected with MRSA, I started researching the causes, the prognosis, the incubation period, prevention, spread and prevalence of these infections. The subject is complex and broad, but these are a few of my ideas about how we can actually make a huge dent in this problem.

1. Get a more accurate count of infections and the deaths caused by them and make it public. Transparency and accountability will lead to better funding and actions to stop this scourge.

a. Develop a way for patients or their family members to report their own infections, because we know hospitals and other healthcare facilities are not reporting all of their infections

b. Require that all infections that contribute to a death, be listed as a cause of death (COD) on death certificates in every State.

2. Require Hospitals/LTCs/Dialysis centers/Surgical Centers to post any current outbreaks on their websites and in plain view for incoming patients.

a. “Outbreak” must be defined first.  Currently ‘outbreak’ means something different according to what infection is being discussed.

3. Rapid screen patients for MRSA and other common infections on emergency admission, or a week in advance of planned admissions. Practice Universal precautions without exception. Postpone elective surgery until the patient has been decolonized.  Contact precautions must be followed without exception for all MRSA colonized and infected patients. All other precautions according to the offending infection must be followed to a tee, by all staff and visitors and this must be enforced.

4. Put everyone in their own room, preventing spread of infection from one patient to another in the same room.

5. Clean up Hospitals and the equipment in them. Assign each patient their own frequently used equipment, ie. Blood pressure cuffs, wheelchairs, walkers, etc.

6. Handwashing all around every time, before and after touching,  nurses, doctors, xray and lab  techs, visitors, and anyone else who touches patients.

7. Help patients to understand their own role in prevention of infections, examples are  handwashing, general hygiene, covering wounds, good nutrition/hydration, covering coughs, not wearing slippers that have been on dirty floors into their bed.

8. Give the Federal and State CDCs regulatory powers. This way, instead of writing recommendations, they can write requirements. Every hospital that is held accountable for infections that they caused, will say “we met the CDC recommendations” and/or “We met the standards of care”.  And they may have met some of them, but certainly not all of them because they don’t’ have to…none of the recommendations are mandated.

Also, the CDC would not have to wait until crisis to go into places with known problems. An invitation would not be needed. Places with known infection outbreaks and/or ongoing infection issues could be visited and problems remedied without waiting for permission to enter. Not a single patient should become infected because the CDC is waiting for an invitation to help the facility.

9. Stop paying Hospitals and other Healthcare facilities for the costs of these infections.  Nobody should have to pay ONE PENNY for an infection they caught while in a facility. Penalties are not enough.  Stop payment from any source patients, insurances or the Federal Government.

This is my short list of ideas. They were gleaned from all sorts of experts and meetings on the subject of infections.  If these things had been in play when my father was hospitalized for rehab for a simple ankle fracture, I sincerely believe his infection would have been prevented.  Two other community members had already died of hospital acquired MRSA infection the same month he was admitted. No outbreak was declared and nothing was ever reported on a State level about that.  No extra precautions or steps were taken to stop the hospital MRSA outbreak.  There was no consistency with handwashing, gloving or precautions even after his infection was diagnosed.  With some hard work and dedication to patients, we can stop this from happening to others.

Networking

The most gratifying and inspiring part of my Patient Safety work is when I can help someone who has been harmed by their healthcare. Although I am a retired RN, I certainly do not have all the answers to people’s questions.  That is where my expert patient safety colleagues come in.  https://www.patientsafetyaction.org/

Last week a friend asked if I would talk with Jane (fictitious name), who is a friend of her sisters.  Jane lives in New York State and had a robotic radical hysterectomy for endometrial cancer.  She is 70 years old.  Her surgery was nearly 2 years ago, and she is still working on her recovery, with Pilates and trying to improve her abdominal muscle tone.  She has come a long way in her recovery, but she isn’t done and 2 years is a long time for recovery from Robotic assisted hysterectomy.

I had the same surgery and it went very smoothly.  I recovered in a very short time, and I had no complications or lingering disability.  I was operated on one day and I went home the next.  I only took Tylenol occasionally for very mild pain.  In just a few weeks I was back to my old self.

Jane had a completely different experience, although she planned on one like mine.  During her surgery the robot failed. Her doctors exact words were “The f*^#ing machine just stopped working”.  As a result, her vena cava (assuming it was her inferior VC) was nicked, and she had a serious hemorrhage.  In order for the surgeon to find the bleed, her belly was opened from  the bottom of her sternum to just above her pubis.   She woke up in the ICU after a 6 hour surgery.  She  has suffered with brain fog and a number of physical issues that required a lot of rehab and physical therapy.  She has a long zipper like scar from the top to bottom of her abdomen, unlike my own 5 barely visible  scars.  After hearing about her experience, friends advised Jane to seek legal recourse.  Three attorneys have looked at her case but have not taken it anywhere.  So, Jane did not know where to turn next and she felt very alone.

Obviously, I can’t fix Jane’s problem, but because of my network of patient safety experts in PSAN, I knew who to ask for help.

1. I messaged a PSAN member who is an expert on patient harm data from the volumes of reports to the FDA.   She gave me info for Jane on where and how to report her experience. Jane was astounded to learn  that there are over 20,000 FDA reports on the Davinci Robot.  Jane felt totally isolated  with her problems, until she learned about this.  Her doctor told her she was the only one he was aware of.  That may be true, but she is certainly not the only one in NY or the US!  https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

2. I wrote a brief email to the Consumers Union Safe Patient Project Email listserve with a brief description of what had happened to Jane and asked for suggestions. This email listserve will soon transition to the PSAN.   I got responses from 3 esteemed colleagues.

The first response came from a man who has also been harmed under the Davinci Robot.  and he also recommended that Jane report on the FDA website, and to check if her hospital has reported this robot  failure to the manufacturer.  If not then they are in violation of reporting requirements.

Angie recommended that Jane join the Unplug the Robot group,  http://unplugtherobot.blogspot.com/  and sent along the email address of the leader of that group.  This puts Jane in touch with other women who have had very similar experiences as her.   The group also has information on expert attorneys who handle the same kind of harm that she has suffered.

Then a PSAN member who is an attorney emailed me.  He offered to talk with Jane.   He  told me that there is no class action lawsuit against Intuitive (makers of the Davinci Robot) which was a surprise.  He said the robots are used for too many different kinds of surgery to do a class action.

Four amazing colleagues in our network responded to me about Jane’s dilemma over 2 days and I have passed on all of this information to her.  I guarantee that she no longer feels alone.  There is nothing any more isolating than being sick or in pain, and knowing it is because of a failed device, or a preventable human error.   People who have not experienced anything similar are uncomfortable with this kind of conversation and there are no local community support groups.  Efforts are made by doctors, hospitals and device makers to keep these things under wraps, and that is even further isolating.

In this quest to help Jane,  I have learned so much.  This is what our PSAN network does.  We learn, we share and we help.  We are a family of expert patient safety advocates.   The value of that in our Patient Safety work ,our own lives and the lives of those we help is immeasurable.

Thank you.

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.

I don’t generally talk much about my own health, but when I think it might help somebody else out, why not?  I have been a generally healthy fat woman most of my life, and I hardly ever go to the doctors.  I don’t take many medicines and I haven’t had as much as a cold this winter. In my lifetime, I have had a two  babies, a few gynecological procedures, got my tonsils out,  had a broken ankle, two kidney stones, and that bout with uterine cancer a few years ago….quickly cured with surgery.  That’s my history in a nutshell.

But, lately I have suffered with shortness of breath. It’s no fun because small tasks like doing laundry and brushing my teeth brings it on, and it diminishes my stamina and interferes with walking distances.  For several years, I have had difficulty breathing after climbing stairs, but it has gotten much worse.   After a flight home last November, when I got off my plane, I started feeling a tightness in my chest and then the unrelenting cough that followed.  Since then, I have had persistant difficulties.  I have blamed it on our pellet stove, my weight, getting old, a dusty house, etc.  But, it finally sunk in that  this was not going away, and it is not smart to diagnose myself.  I am not a doctor, and I don’t pretend to be one.

So, today I had my first doctors appointment for SOB.  This  is only my 2nd visit ever with this new doctor.   I really appreciate his manner, his  no nonsense way of speaking, and his intelligence.  Mostly I appreciated that he both listens AND speaks.  We partnered up!   He ordered a 6 minute walk test, a pulmonary function test, an EKG (all done in his office)  and a Chest Xray.  He considered adding a chemical stress echo cardiogram, but we delayed that because the PFT indicated emphysema!

OH MY GOD!

I smoked in my youth and until I was 35. It’s been 30 years since I lit up.   Interestingly one of the reasons I quit is that in two of my nursing jobs,  I administered  PFTs , and so I did a couple on myself!  My pulmonary function was declining back then because of smoking  and so I quit.  It was one of the hardest but best things I ever did for myself.  I had an immediate improvement in my breathing, stamina and capacity for exercise back then.

I’ve always been proud that I quit, and afterward, I could  do things without huffing and puffing.  My deceased father had emphysema, and my mother has asthma.  I have seen them both struggle to breath.   I have watched them suck in inhaler mists and take medications for most of my adult life.  I never thought I would have emphysema, but could it be the lesser of two evils?  The differential diagnosis was  Coronary Artery disease/blockage….and guess what they would have recommended for that.  No, I don’t want to think about that.  We won’t go there unless necessary.

So, my plan is to drop some of this weight, start some kind of walking regimen (spring MUST be almost here isn’t it?), use the steroid inhalers that the doctor gave me, and hope for improvement.

I’ll go back in 2 weeks.  I’m hoping to avoid further testing and procedures.  We shall see.  I’ll share this journey, like I did with the cancer. It just might help someone else.  I’m so pleased that I found a doctor that I could ask as many questions as I wanted.  He explained ‘our’ plan in detail, and we move on.

Chapter 2 in 2 weeks.

Read more…

Whaaa??  I am sure most who are reading this are wondering about the title.  This is the title of my most recent conference, the Summer Institute of Informed Consent.  http://siipc.org/program-2014/   It was held at Dartmouth College, and they generously gave me a scholarship to attend.  They understand and value the importance of the Patient’s Voice in the room.  There were doctors, lawyers, reporters, educators,  healthcare executives, nurses (oh, I LOVE nurses), patients and Patient Safety Advocates, just like me.  It was a gathering of about 150 passionate people who want better healthcare, but all focusing on Informed consent and Shared Decision making.

We learned about education tools, and approaches to SDM. We learned the history and saw example of SDM policies.   We shared ideas and concepts, and we networked.  The speakers were some of the most powerful people in healthcare, just plain brilliant people.  What the heck was I doing there?

I had an epiphany this morning.  I don’t talk about money too often, and I don’t generally whine, but although I was granted a scholarship, my husband and I paid to rent a car, get a room and have meals.  This conference cost us around $600.  That is quite a bit for two older folks on a limited retirement income.  My husband (who accompanies me to most of these conferences) and I paid to be part of this conference.  At the conference I was surrounded by some very rich executives and others.   Why do I do this?  Am I crazy?

No, I don’t think I am crazy.  If I don’t go, and the others who speak up as patients and for patients don’t go, the most important and powerful part of any healthcare conference is missing.  Lately,  all of the conferences I attend include patient speakers (often unpaid volunteers), patients on panels with experts, and patient attendees.  Organizers carefully choose strong patient advocate/representatives and donate scholarships, and sometimes expenses for these generous patient advocate volunteers to be part of the conversation.  I contend that our  increasingly large and loud voice is the most important and powerful presence at any of these conferences.

When  healthcare executives and leaders meet in exclusive expensive conferences without patients…..just exactly what are they accomplishing?  We patients often make leaders very uncomfortable, but we keep the conversations real and honest,  and isn’t that exactly why we are there?

Thank you to the SIIPC for  this intense and valuable conference, and for making me part of it.

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.

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……