McCleary MRSA Prevention

57 meatballs

That’s 1 beega meata ball……….

John McCleary, my father, was a great spaghetti and meatball maker and eater.  For 62 years, he and Mum coordinated their efforts dozens, maybe hundreds of times to present this delicious meal to our entire family. When Dad was younger, he helped more, but as it became more difficult for him to stand for long periods,  he sat in his chair at the head of the kitchen table and peeled garlic and cut up green pepper.  Then my mother would put that and the already ground beef through the hand cranked meat grinder.  Then Dad would begin rolling meatballs by hand, and lining them up on the table.   When we all arrived with our families he could tell us exactly how many meatballs he made that morning and what time he started working on this meal.    And, the house would smell amazing….. garlic, tomato sauce, frying beef.   Oh my God, that was the most amazing smell, and Dad sat in his place of honor with his bragging rights that he (and Mum of course) had made something we all loved.  My oldest son and I loved to have a meatball right out of the frying pan with just a little sauce and a bit of salt.  Yummm.   I never thought I could recreate that meal for my own family, but a long while back, Dad wrote down what he put in his meatballs and sauce, so I could try.  I have tweaked it only slightly….  I use fewer cracker crumbs, and eggs, and more meat in the meat balls, but the sauce is the same.   I am always confident that when I put the effort into this meal, that both of my sons will be here with their big appetites.

This morning, I put together tomato sauce and meatballs.  Dad was on my mind the whole time.  Today is a big football day, semi finals for the season.  I could care less about that because Downton Abbey is on tonight and that is my thing.   But, because it is mostly a ‘man’s’ day, I thought I would make the effort and do it up big with this meal.  For almost a whole year, I have been watching my diet and weight.  I have done pretty well, but today I will feast.  Why?  Because I made 57 meatballs (I will announce that to everyone later, like Dad use to in the old days) and the aroma in my house is beautiful.

This meatball is for you Dad!

Today, I spent my morning volunteering at a flu shot clinic at the brand new Brewer, Maine Community School.  My name is on a list with the State of Maine called Maine Responds.  My name landed on that list a few years ago when we had massive flu shot clinics in Bangor because of the Swine Flu scare and epidemic.  I love volunteering and doing this work to help preserve public health in my area.

The new school in Brewer impressed me.  I met and talked  with the school nurse, Carol.   She offered a tour of their school health clinic.  Jeesh, I remember my school nurse’s office and it was the size of a closet.  When I substituted for a regular school nurse in a different bedroom community outside of Bangor, same thing….a closet size room with a cot for sick children that needed to lie down.   Carols office was so exciting. She had her own space with supplies, records and medications.  There was a separate exam room with 2 cots…but what really floored me was the  in-school  medical clinic with dental services and regular medical services.  Two days a week a Family Nurse Practitioner visits from Penobscot Community Health Services up the road.   The children are seen by appointment and a sliding scale fee is arranged.  In other words, children in need can get care for free.  Wow…we have come a long way.  This is a community oriented and patient centered way to meet the needs of all children, no matter the financial circumstances at home.

I remember small  children coming into Walk in Care at Eastern Maine Medical Center, where I worked in the 90s.   Too many of them had horrible cavities. Some of their teeth were just stubs and they were infected and in pain.  Some of these children had never sat in a dentist’s chair and of course they had not been taught proper flossing and brushing.  Diet was another problem.  Now, these kids can be cared for  and educated about their health AND their teeth right in the school in Brewer.   This needs to happen everywhere.  No child should be ‘different’ than another when it comes to physical and dental health.

I felt so good coming home from my little excursion today.  I learned that in places, there is progress in healthcare education and maintenance…..and what better place to start than in our children’s schools?

OUCH

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.

http://www.cnn.com/video/#/video/bestoftv/2012/11/29/ac-griffin-medicare-fraud-investigation.cnn

On November 28, Wolfe Blitzer, CNN,  reported that a whistlblower lawsuit against Davita Corporation for major medicare fraud is impending.  If the allegations in this video are found to be true, then this lawsuit has the potential to be the biggest case of Medicare fraud in US history (according to Blitzer).  Davita recently was approved by the Maine DHHS Certificate of Need office,  to purchase (for $17,000,000)  and operate  the Dialysis assets of Eastern Maine Medical Center in Bangor, Lincoln and Ellsworth Maine.  Davit, EMMC and the Maine CON office were aware of this an other lawsuits against Davita at the time of approval.

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

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

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

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

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

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

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

We missed Dad at our Thanksgiving table again this year. 

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

I arrived home last night around midnight, after flying north to Bangor from Washington DC. Frankenstorm (the frightening Halloween nightmare that all of us in on the East coast are facing) was just brewing up down in our nation’s Capitol. Because I live north of almost everywhere in the US, it is difficult to get a direct flight home, so I had to take off and land twice. DC to Philly, to Bangor. DC to Philly was a ‘filling your pants’  kind of flight. Philly to home was a piece of cake, comparatively speaking. I realized, that every time I fly, it is like when I had surgery last year….I put my life into another human’s hands….last night, my pilots were heroes to me!

So what drew me to DC when I knew Frankenstorm, also known as Hurricane Sandy, was brewing. PCORI did.

From the PCORI About page: http://www.pcori.org/about/

 Honestly, I didn’t have a clue what PCOR was until I went to this meeting. Getting chosen to attend was a challenge to me, and I was very curious about the work, so I wrote an essay about who I am and what I do. Apparently, they liked it and I was one of 150 (out of 350 applicants)  chosen to attend this meeting.

The focus of PCORI is to involve patients, caregivers, organizations, and other stakeholders in patient centered medical research. Their explanation was to do research WITH patients and  WITH their involvement rather than about or for patients. Rather than becoming a numerator or denominator after a research project (very cold and demeaning), patients will be involved from beginning to the end of a research project. Patients will create research questions, and be part of the process and review of the research. How refreshing.  Anyone can create and submit a research question on their webpage http://www.pcori.org/get-involved/. PCORI’s  job is to field and match questions with researchers.  Those people seeking funding for a research project must comply with the rules of PCORI engagement before they are granted funds.

This is my simplistic perception of PCORI and their innovative approach to medical research. I applaud them for doing it.  Imagine this….medical research BY and WITH patients. Let’s face it, patients are the experts about themselves.  Before just recently, that was unheard of. 

The other 149 participants of our DC meeting were from all over the country, and came from all levels and varieties of patient advocacy.  There were doctors, nurses, patients, researchers,  specific diseases foundations representatives (arthritis, breast cancer, Lyme disease, parkinsons,  Kernicterus http://www.kernicterus.org/ etc), family members of disease/medical injury patients, survivors of diseases, advocates, activists, consumer advocates …………….   It was impossible to meet everyone, but the ones I did meet were all equally passionate about their causes,,,,and most wore multiple hats…     My hats were, survivor of a loved one who suffered  medical harm, survivor of cancer surgery, healthcare consumer,  nurse, activist, advocate, and family caregiver.   I was surrounded by people just like me, and it was an amazing experience.

So, what do I do with my new contacts, energy, and information?  I can train to become a research reviewer for PCORI, and I am considering that.  I can and probably will come up with some challenging research questions.  I will spread the word about PCORI by writing to my local newspaper.  But, what I want to do most is drive or at least be a passenger in the PCORI RV/bus.   When PCORI decides to use my suggestion to do a nationwide PCORI tour to raise awareness of their work, and to hold  town meetings about Patient Centered Research in every corner of the US, I want to be there. My PCORI partner (chosen for me by PCORI prior to the meeting) had the great idea of town hall meetings, so maybe she can join me on that bus. Last night when I left, one of the leadership people told me the driver of the bus had to have a tattoo……it would be a first for me, but I am willing to do that to be part of the PCORI tour.  That is how important I think their work is.

Patient engagement and Patient Centered Care are buzzwords and trendy goals of primary care doctors, Hospitals and other providers these days. I will attend a meeting with PCORI, or Patient Centered Outcome Research Institute starting on Friday. Before I go and absorb what the other 149 stakeholder attendees have to say about Patient Centered Care, and I forget what ideas are mine and what are somebody else’s, I am going to write this blog entry.

There was a day when becoming a healthcare worker was considered a calling. That calling was rated right up there with becoming a nun or a priest. It was kind of a sacrifice, a career chosen to be in service of society and sick people. There have always been different levels of caring. Some cared more than others, and some were just plain mean spirited..(nasty tempered crotchety nurses and doctors were not unheard of for sure). But, generally, becoming a medical worker meant your patients came first, and you genuinely cared. You didn’t just care because you were paid to. When you cared for patients, you didn’t consider what kind of insurance they had, or if they had any at all. You didn’t worry about who they were or where they came from. You never judged them. You just knew they were sick or injured and vulnerable and they needed your comforting and help. You gave that help/care unconditionally. I’ll admit, that was difficult sometimes, like the time I had to triage an arrogant young murderer and rapist of a little girl , or when I had to care for the young woman who beat my son black and blue when he was only 3 years old, while she baby sat him. But, I was never cruel to anyone, even those despicable people.
I didn’t recognize it during my years working as a nurse, but I believe I was delivering patient centered care. Of course, I never asked them how I was doing, so it might be a little arrogant of me to say that.

Now we have corporate centered money making care, government centered care, rich vs poor centered care, political centered care, and provider centered care.

The quality of care that a person gets now depends on way too many factors. Money is #1. If you do not have good insurance coverage, you will find it terribly difficult to find a practice that will care for you. Some say…that’s no problem…just go to the ER. The ER does not give patient centered care. They treat a problem, not the entire person. Healthcare maintenance and necessary screenings are not provided in ERs. If you cut yourself they will sew you up, but you will not get your hypertension or other chronic illness treated there. They only treat the immediate problem.

If you do have good insurance, there may be some who will take advantage of that and order studies that are not necessary. Automatically doing an MRI for back pain is not patient centered care…that would be money oriented care. MRIs are very expensive. Advil, heat alternated with ice and some gentle exercise may cure your back pain and at a much lower cost, to both you and your insurer.

Balance is necessary for care to qualify as patient centered.
This is a list of components that I think are absolutely necessary to qualify care as Patient Centered.

1. The patient is at the hub of their care
2. The patient is revered, respected and deferred to on all decisions
3. The patient makes the final decision on care
4. Questions are encouraged and answered.
5. All alternatives, including no care at all, are discussed and the advantages and disadvantages of all.
6. Possible complications, including possible harm and or infections must be part of the discussion of alternatives. Real time patient safety and quality data will be readily available on hospitals and other healthcare settings, and on providers.
7. No one will be asked to sign an “informed consent” until they are informed.
8. All projected costs would be laid out for the patient.
9. The patient’s age, healthcare status,  medical literacy, cognitive skills, abilities and disabilities, cultural beliefs, and all other particulars about the patient will be considered in recommendations and decisions about their healthcare.
10. Decisions on end of life or comfort care will be the decision of the patient as long as they are competent to make that decision. All patients will be encouraged to assign a durable Power of Attorney, and write a living will.
11. All possible preventative education will be provided to patients prior to treatment and/or hospitalization when time allows or during Hospitalization during emergencies
12. Appropriate screenings will be done according to age, and the care or procedures that patients are facing. Unless emergent, procedures will be delayed if screenings indicate that the patient is currently at risk if they have elective procedures.
13. A trusted bedside advocate will be with the patient if they want, at any time of day. Restricted visiting hours would be eliminated.
14. RN to patient ratios would always be appropriate for the level of care being delivered.
15. Long waits in waiting rooms and for assistance when hospitalized would be eliminated.
16. If things go wrong, honest immediate disclosure would take place and assistance (emotional/financial/other) in dealing with any harm would ensue. Patients would never be charged for costs associated with preventable healthcare harm. Patients and their families would become integral in the root cause analysis, and considered part of the solution so other patients would not suffer through a similar preventable harmful event.
17. Second opinions would be encouraged and a matter of routine. All insurances would reimburse for second opinions.
18. Patients will be able to request their records or at least a look at their records and there will be no reluctance or altering of records by the provider. Better yet, the patient can access their entire health record online.
19. Patients would not be expected to leave their free will at the door of a Hospital or other healthcare setting.
20. Patients would be cared for in freshly disinfected room with clean equipment, and never in a room with another patient. This eliminates chances of contracting an infection from a roommate or being mistaken for the roommate, and will be more conducive to having an advocate with the patient. All healthcare workers would wash hands with soap and water before and after any patient contact and it would be done without reminders from Patients or families.
21. Verification of patient identity and staff identity would be routine, particularly prior to procedures and medication administration. Evidence based bundles and check lists would always be used , observed, and mandated.
22. Only recipients of care get to declare if the care was Patient Centered.

This is a long list, I know, and it is probably incomplete. I can add to it anytime. I welcome additions!

It’s weird the things you remember…maybe even more weird the things you forget. One year ago today, I got my diagnosis of uterine cancer. I remember that phone conversation with my doctor almost word for word. It was alarming, but it didn’t really floor me. I just knew I had to get busy…and I got busy. I found the best GYN oncologist surgeon in Maine, and the best hospital to have my surgery in. Other than a long delay for an appointment and surgery, my experience was stellar. I am one of the lucky ones….or maybe it wasn’t all luck. Maybe it is what healthcare leaders and consumers are calling Patient Engagement. Every patient should do their homework before asking their doctor questions about prognosis, alternative care, and other things. Then they should research all that is availa
ble about their providers and learn about possible complications and what they can do to avoid them. I honestly think that preparing for healthcare…surgery or other procedures….is half the reason that some patients do better than others. Watch your caregivers…trust them to do right, but don’t assume they will….get them to wash hands, and not touch you unless it is with clean hands. Follow advice on showing up clean for surgery (antibacterial showers for a few days before), get a MRSA screening done, and have a trusted loved one or friend stay with you in the hospital. I did all of the above and more….and look at me today. I am cancer free and I had absolutely no surgical complications. I don’t consider myself a survivor…cancer was just a temporary condition that I managed to get rid of with some incredible help. I was very lucky, but I was also very careful making my choices.

I am now well into my third year in Patient Safety Activism.  My father’s preventable death because of a hospital acquired infection continues to drive my passion.  Although he was old and he had health problems, the infection that took away his independence, his strength, his appetite and his ability walk and to live out his remaining days with my mother should not have happened.    Nobody except  hospital insiders and the grieving family and friends of the other 2 deceased victims of that MRSA outbreak knew about it.  So, my father was not only a victim of MRSA, a deadly superbug, he was also a victim of hospital secrecy. Hospitals generally sweep hospital harm under the rug and schmooz patients and families into believing it is part of doing business.  I do see a gradual change in this, but it is taking way too long.

Yet, when victims or their loved ones become patient safety activists we are expected to be kind, polite, and above all calm.  Many of us have been characterized as angry whiners. I’m sure we have been called worse behind closed doors.   Imaging that!  Let me just say, I am angry.   My anger is completely  justified.   But, when I testify anywhere, or when I share my father’s tragic story, or I work with anyone on patient safety, I remain polite, and I restrain that roaring lion inside me.  I am a professional, and I use the manners that my parents taught me.  This brings me to healthcare industry push back.  I knew when I stood up to fight for patients and patient safety, that I would be exposing the underbelly and preventable horrors of healthcare…the infections, the errors, the short staffing, the disrespect and paternalism,  the ‘toxic hierarchy’, the big bad truth of what happens inside hospitals and other healthcare facilities.  I knew it would not make me popular with the “industry”, but of course that was not the reason for my work.  Patients and their safety were my priority, much like when I practiced as an RN for over 30 years.  I saw so much during that time, but I had bosses…in fact, I layers upon layers of bosses and my family depended on me for that paycheck.  How far could I realistically go with my advocacy during my employment.  This is why I find retirement so liberating.

Healthcare industry push back is alive and well.  My first bitter taste of that was in my very first meeting with Hospital people about MRSA. A contentious doctor  proclaimed that the new Maine law to screen high risk patients for MRSA on hospital admission was  “irrelevent”.  I had just run a patient safety campaign and spent about 4 months writing and rewriting a very involved and detailed legislative proposal for MRSA prevention for the Maine HHS committee, to end up with a tiny part of it in Maine law.  That big old lion was roaring inside my head and I wanted to let him out to attack that doctor.  But, being the lady that I am, I  kept my cool, and moved  beyond that arrogance, because we were all in that room to do a job, and that was to make patients safer.   The rule making work continued in that committee for months, and his attitude never changed. If I said white, he said black.  So much for collaboration.  Interestingly, the rest of the group was mostly nurses and none would contradict that doctor.  Perhaps I am a little biased, but I love nurses and the herioc work they do, but those nurses ’just went along’.    “Toxic hierarchy” is a new term I recently learned and it describes this group’s behavior perfectly.

This summer, I spent most of my time working on a campaign to stop the acquisition of my local dialysis clinic services by a large for profit dialysis corporation.  My reasons for this action are described in an earlier blog, but the greatest concern over this is patient safety and access to care.  I talked with experts, dialysis patient advocates and former patients and employees of that corporation.  I worked with the Maine State Nurses Association, the Maine Peoples alliance and other local socially responsible groups.  I did my homework and research and compiled resources and documents. Most importantly, I collected stories of patients who said they were harmed and dismissed.  I took all of this and carefully prepared testimony for the Maine Certificate of Need hearing on July 10.  In August, I came upon a letter that the corporation had written to Maine officials. The letter was almost entirely about me!  It contained misleading and downright dishonest comments about my work, how I go about it, and my character.  It was apparently an attempt to discredit me, and my work and to silience me and the patient’s voices. It appeared that the letter was also written to pander to the current pro business and anti union sentiments in our State governement. This guy covered it all, and if one didn’t know me, and saw that letter, they would  think that I am a monster!   This carefully crafted letter and  packet of “evidence” against a  retired RN volunteer, who is now an honest hard working patient safety activist  was  the biggest and longest piece of push back rherotic I have experienced yet!    And, it is now an offical State document!     My first thought was, if they treat me this way, imagine how they treat patients.  Oh my, those poor vulnerable patients.  The good thing about this letter is that it validated my beliefs about how ‘small’ this corporation really is.

I didn’t expect to make new friends or win over the healthcare industry with my work.  I did expect to help save lives, make patients safer, and to be treated with respect while I am doing it.  All of us who do this work have the same expectation. Because we have chosen to lead in Patient Safety because of personal tragedies, instead of waiting for the industry to do it all on their own or even to invite us in, we are sometimes criticized and disrespected.    I have watched two of my passionate colleagues experience push back when we were included in industry leaned events.  One was a nurse who tried to talk about her mothers tragic healthcare debacle in a federal DHHS HAI meeting a  few years ago. The physician moderator of the group rudely cut her off mid story and she was terribly upset by that.  The second one was a presenter at the recent Patient Safety Academy in Portland, ME.  He was doing a detailed and well prepared presentation on C Diff.  His beautiful and healthy middle aged mother died of the horrible infection and he has done tremedous work on awareness and prevention.   A very rude crabby infection nurse, cut him off and ‘told him a thing or two’.  She was obviously in denial of the imperfections in hospitals, and took my colleague’s accurate and non accusatory presentation as a personal affront.  Her actions were embarrasing to her two coworkers and to everyone else in the room.  This was my colleagues first time doing a presentation at such an event.

Civility.  Is there any such thing in patient safety advocates’ conversations with the healthcare industry?  I think so, but it isn’t consistent.  All of us need to take a deep breath and think about who really matters in our discussions.  We need to put away the egos, denial and the defensiveness. Al Gore would advise us to put the anger in a lock box, and I really do make an effort to do that.  We all need to consider what and who our conversations are about.  They are about patients, suffering, hurting human beings, who need all of us to survive, heal safely and live.  Come on….let’s get along, and have these conversations without push back.  

Backbone.  That is what it takes to do this patient safety activism job and do it well.  The industry has a lot to learn from us, and perhaps the first thing they need to learn is manners.   I have never seen any of my patient safety colleagues be impolite during patient safety events or conversations.

In 2008, my father John McCleary was infected with MRSA while he rehabilitated from a minor ankle fracture at a tiny hospital in our home state of Maine. After he died, I began a Campaign in Maine to screen all high-risk patients for MRSA. Months later, Governor John Baldacci signed a law requiring all high-risk patients entering Maine Hospitals be screened for MRSA.

Then I shared Dad’s story with others, including the Consumers Union Safe Patient project. The CU gave me opportunities to join the nationwide campaign for Patient Safety. This networking has been helpful in my local and national Patient Safety work. I now work in the Maine Quality Counts consumer advisory council. We are making a difference for patients in primary care settings in Maine. I see attending Partnership With Patients Summit in KC as a way to grow this network of patients working in patient safety.

When I became a cancer patient last fall, I used everything I had learned to improve my chances. I learned all I could about my condition, my surgery, my alternatives, and my care. I improved my diet and exercise habits, and I asked for MRSA screening 2 weeks ahead of surgery. I used Chlorhexidine showers for 2 days before and on the day of surgery. I used online resources to find the best Hospital and doctor for my needs. I am now cancer free and I’ve had a complication free recovery. Knowledge is power, and we are safer with it than without it. I can share my experience of being an engaged patient with others and they can share my story with even more.

I didn’t assume that the hospital would keep me safe; I explained my expectations clearly.

Excerpt from my letter to the hospital:

Take the important “time out” before surgery and complete that check list. Give me the appropriate pre op antibiotic and give it at the right time. Keep me warm and clip, don’t shave my hair. Tell me your name and I will tell you mine, on every contact. Please don’t ask my husband to leave my side. He will help keep me safe. Wash your hands every time you touch me or my environment. Pain Control is very important to me. Use the 5 Rights for every medicine you give me. Remove my urinary catheter as soon as possible. Involve me in all discussions about my healthcare plan even if something has gone wrong. Secrecy erodes trust. This list of steps can keep me safe and sustain my trust. Push me hard to walk, cough, deep breath, and take fluids. I want to be out of here as soon as possible because I know it is the best thing for me and my health.

I am giving you my trust, gratitude and sincere admiration for the incredible work that you all do.

You are giving me the safe, clean and expert healthcare, so I can get back to my family for Christmas and begin my recovery.”