Jerolyn Ireland at the Maine Patient Safety Academy

September 7th, 2014 No comments
Jerolyn Ireland RN

Jerolyn Ireland RN

On September 5, I attended the 5th annual Patient Safety Academy.  This event was another great learning and teaching time for me.  Every year this event improves and the speakers are talking more and more about the things I have been fighting for.    I can relate!  FINALLY!  I don’t feel alone anymore.

This year, my colleague Jerolyn Ireland RN, and I brought the patient’s voice to the conference. We did a co presentation called Nurses as Patients, When Harm Happens.    Jerolyn’s personal healthcare harm story is downright incomprehensible.  I first met her about a year ago.  She contacted me through this blog. She was looking for someone who understood MRSA or Methicillin Resistant Staphylococcus Aureus and the harm that it does.

In 2012 at the age of 70, Jerolyn was actively employed as the Public Health Liaison Nurse for the Maine Tribes. She had no intention of retiring until she was around 75 years old.  But, out of the blue, she suffered a grand mal seizure.  When she fell, she broke both of her shoulders.  She required surgery on the shoulders and became immobilized with both arms in casts and across her chest.  During her hospital stay she suffered through bilateral Deep Vein Thrombosis, a urinary tract infection, hallucinations and skin ulcers.  With all of these complications and problems she was shipped off to a Rehabilitation facility, an affiliate of the Hospital.  During her stay one night, she called for assistance to use the bedpan, remember, both arms were immobilized.   She was told to pee in her bed because the nurses were too busy.  I cannot begin to imagine the humiliation and degradation that Jerolyn experienced.

After she rehabilitated, she did return to work for about a month.  But, she also learned that the cause of her seizure was a benign brain tumor.  Her neuro surgeon assured her that she would be back to work within 5 or 6 weeks after removal of this tumor.  This was when Jerolyn’s real problems started.

Within a few weeks of her surgery, she got a surgical site infection.  When she called her doctor, he said he couldn’t see her right away.  No cultures were done.  The infection progressed.  At one point, when the doctor did finally see her, he prescribed  Zyvox, a hugely expensive oral antibiotic.  Her son went to pick up the medicine and the cashier asked for $1200.  That isn’t an amount of money that most of us carry around.  So, they gave her Bactrim, which is sometimes effective with superficial skin MRSA or boils, but her infection was a tough one, and at this point, it still had not been cultured.  Her troubles continued, and multiplied and got worse.  By the time I met Jerolyn, she had 5 additional skull surgeries, long term antibiotic treatment, more rehab and home nursing and physical therapy, and several more seizures.

Jerolyn's Fifth skull surgery

Jerolyn’s Fifth skull surgery

Jerolyn went from being an engaged and widely respected and highly regarded professional nurse, to her current state of medical disability in just a few years because of healthcare harm.  She told her neurosurgeon about her infection and he blamed her C Pap machine (used for sleep apnea)  for the infection (that was the first time I have heard that crazy excuse for a preventable MRSA infection).  When she wrote a letter to the Hospital where she contracted the infection, she got a standard “fluff” letter in response.  That Hospital, and the many other services she has needed after the harm, continue to bill her.  And she can’t pay.  So they have bill collectors after her.  She has lost all of her hard earned possessions…..all except the most important one…her life. And Jerolyn’s life is precious.  She is one of  the most generous, courageous women I know.    Hang on  Jerolyn because you and I have work to do!

Jerolyn will likely file for bankruptcy, when she can find the money to pay for it.  She has lost her home, her car, and she has even sold her jewelry.  She gets wads of medical bills every day.  Early on, she tried to keep up with the bills by paying with credit cards, and those bills come in regularly too.  She struggles to pay for food, but does not qualify for food stamps. During her seizures, she has damaged some teeth, but cannot access and pay for dental repair. This financial and emotional harm has also rippled out to her son and family, because he is her steadfast advocate and POA.

Jerolyn's overflowing bureau full of bills

Jerolyn’s overflowing bureau full of bills


I was so humbled and proud to stand with Jerolyn Ireland at the Maine Patient Safety Academy and raise awareness of the impact of healthcare harm.  Most of this harm is invisible to professional caregivers. It is unlikely that any of her caregivers from her hospital stay for her first brain surgery know a single thing about Jerolyn’s struggles.   The ripple effects of harm come in many forms and they multiply and accumulate at an amazing speed.   Jerolyn and I worked very hard for several weeks to prepare this presentation, but I learned so much from her and we have become friends. Just a few weeks ago, she was readmitted from 2 more grand mal seizures.  When I asked if she wanted to cancel our presentation, she said no, that she absolutely wanted to tell her story.  So, her dedicated son Mark, a paramedic, drove her to Portland from Houlton…a 4 hour drive, and we, all three of us,  brought the real story about healthcare harm and the patients’ voice. Jerolyn’s determination, optimism and sense of humor is amazing.

Only in America.  It only happens here.  Medical debt is the #1 cause of bankruptcy in the US.  Healthcare harm is the #3 cause of death in the US.  This is a huge SHAME ON US!

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Advocates campaign for National Patient Safety Board.

July 15th, 2014 11 comments


June 28th, 2014 43 comments

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.   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.


Catching my breath after MQF 2014

April 3rd, 2014 2 comments












I returned home yesterday bone tired and breathless, after 3 action packed healthcare advocacy days.  The 3 days culminated with the MQC annual conference.   The meeting started with a lovely opening by my friends and esteemed colleagues Dan L’Hereaux, Chairman of the MQC board of directors,  and Dr Lisa Letourneau, MQC Director.  Then a brand new patient advocate Loren Arford spoke from his heart about his experience as a member of his doctors Patient and Family Advisory Council.  After our State Commissioner of Health, Mary Mayhew spoke,  we all got  a slap down by Dr Doug Eby, from South Central Foundation, a population owned healthcare service in Anchorage AK.  WOW, I loved that guy.  I sat at a table with my husband, my niece Angela McCleary, Rosemary Gibson, Daniella Nunez from the Consumer Union Safe Patient Project, Poppy Arford and her husband Loren, and we all agreed, Dr Eby speaks OUR Language. It was soooo nice to take our wading boots off and listen intently to this man’s message.  With his brilliance, he cuts through the BS in healthcare, and because of that, and his willingness to partner with  his patient/owners (most importantly), and his staff, his practice has immensely improved the health and reduced ER visits of the native population he serves.  He isn’t that overly impressed with his work because he knows it isn’t 100%.  He settles for nothing less.   Oh yes…this guy is getting it done.  Bring it on Dr Eby!

As always, there are so many things to see and do, and so little time.  I’m thinking that maybe our next conference should go for an extra day, and then we would all have the opportunity to go to every single break out session.  Making choices is always hard. I attended the Choosing Wisely session first.   I must say, Dr Santa earned his keep in Maine this past few days.  He shared his wisdom with us 4 times in 2 days, and I am so grateful for that and for him.  Choosing Wisely is an incredibly transformative campaign.

Next, I introduced my friend and mentor Rosemary Gibson.  She joined with Karen Heck, Mayor of Waterville, and David White, small business owner, to have a conversation about how ever increasing healthcare costs are affecting our communities and businesses.  Her soft spoken wisdom blows me away every single time.  After I stumbled on my introduction of Karen (saying “tea tree” instead of Tree Spirits LLC/ the name of her small business), Rosemary carried us off into this deep and often disturbing discussion.  She speaks the truth, and the truth is hard to hear.  Oh my, our communities and our small businesses are suffering, and a big part of that is because of healthcare benefits and services costs.  There is an undeniable connection.  Something’s got to give.

I was in line getting my lunch and having an incredible conversation with my friend Susan Schow, when I heard the announcement that the awards were beginning.  OH NO…I asked to skip in line because there were a LOT of people there.  My dear friends Dan L’Hereaux and Poppy Arford presented me with the Patient Partnership Award yesterday.  Time to get the Kleenex out.   It’s hard for me to put into words how this affected me.  The reason I am doing all that I do, is because of my Dad.  His preventable infection and his poor healthcare outcome catapulted me into this fray.  There is no doubt he was with me yesterday.  It still makes me incredibly sad to think about this, but from bad comes good.  After Dad’s infection I wanted improvement.  I still do.  I have  come to realize that the work is never ending and that the goals need to be (ala Dr Eby) 100% or excellence, and nothing mediocre.  No compromises.  So, my greatest award in this work is that gradually,  patients are safer, and fewer of them are getting infections. My next greatest award is that room full of patient safety advocates and activists. Three years ago I attended this conference alone and I sat with strangers. The only person I knew was Regina Holliday!  What a difference 3 years can make.  I’m amazed at who surrounds me at meetings now.  I am very humbled by and grateful for my growing circle of like minded advocates and  for my beautiful award.

Dr Susan Burden is absolutely something else!  I totally appreciated the s-t-r-e-t-c-h.  It was silly, fun and much needed after lunch.  She is dynamic and progressive, and I totally understand the success in her California programs.  I’m not making excuses for my excess weight, but really….we are at a bit of a disadvantage with our long difficult winters.

Finally, I was honored to facilitate a late afternoon break out session for 3 other consumer advisory council colleagues.  Poppy Arford, Dian Boas and Kim Humphrey each made their cases for  1. healthcare costs transparency 2. pharmaceutical information transparency and 3. Organizational transparency.   These three experts squeezed an amazing amount of information into 24 minutes (8 minutes each..I know because I timed them).  Their messages resonated big time.  The response, and questions from our audience were proof.  This type of presentation  is not only informative, but it is essential.  Thank you to my very special friends/colleagues for sharing your knowledge and insight.

Maine Quality Counts, under the leadership of Dr Lisa Letournneau, is very adept at coordinating this incredible yearly event.  They are not afraid of ‘mixing it up’ and including controversial and sometimes uncomfortable messages with the good news in healthcare.  That takes great skill and wisdom.  The hard working staff and the awesome planning committee (I was on that!) deserves a huge applause.  Can you all hear me clapping??

I’m beat…time for a nap.




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St Patricks Day Birthday

March 15th, 2014 1 comment






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

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

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

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

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

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


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How the Koch Brothers hurt 600 retirees and their survivors in Northern Maine

February 19th, 2014 9 comments

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

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

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

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

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

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

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


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What they say after they hurt you

February 17th, 2014 12 comments





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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another said this

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

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



I’ll tell you my secrets if you tell me yours

January 18th, 2014 8 comments

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


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

How many secrets do they share with us?

What if…

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


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

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

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

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December 7th, 2013 45 comments


politician-windbagDefinition of Pontification from the Urban Dictionary

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.


October 20th, 2013 2 comments

After 5 years of this work to improve healthcare safety and quality, I have become very  weary. From my perspective, things are not improving very quickly.    It seems I have become a magnet to strangers who have had tragic healthcare harm experiences.  Many of these tragedies involve death and disability.  Here are a few of the recent stories that complete strangers have shared with me in an airport, a hairdressers shop and on the phone.   I am privileged that they trust me with their stories and that they have confidence in me to make a difference.

1.  A woman in her late 40s sat next to me at the DCA (Washington DC) airport.  I offered her a Wet One wipe to clean her hands after she ate a Cinnabon roll, and so the conversation started.  She had mesh implanted for a  prolapsed bladder.  She said  “It has ruined my life”.  She is unable to have sex because of the pain and her husband divorced her.  She makes frequent trips to a GYN office (not the one who did her surgery) for exams and reconstructive surgeries.  That doctor told her that she repairs the many messes that her original doctor makes, but “you didn’t hear that from me” follows her comments.  One doctor will not rat out another. She knows at least 4 other women who had similar surgical mesh outcomes (done by the same doctor) in my region who  would share their stories.  I encouraged her to talk with a local news reporter and I connected her with the reporter and others who can help her and the other victims of this local doctor to share their horrible stories.  They can help to prevent this from happening to other women.

2. A hairdresser in my usual salon approached me when I was getting my hair cut a few weeks ago.  She told me about her 77 year old Aunt, who was still an employed nurse, and who fell and broke her femur recently.  She had surgery in one of my local hospitals.  Within a day or so, she was critically ill with MRSA and sepsis.  That Hospital said they couldn’t give her the care she needed so they transferred her to the other Hospital in town.  She died within one week because of infection/sepsis.  She was infected during her surgery.  Then she told me about her sister.  She had the sling placement surgery for her sagging bladder.  This was done by a GU surgeon.  She had excruciating pain after the surgery and made repeated visits to the Medical center ER for treatment.  She was readmitted several times, but her surgeon kept insisting that there was nothing wrong, and there was no infection and she was discharged each time to suffer more at home.  Her regular family doctor later detected something wrong with her heart. She was referred to a cardiologist, who told her there was nothing wrong with her heart.  Finally she was admitted to the hospital again, in sepsis.  The infection from her sling surgery had become systemic and affected her heart and she died.  This debacle happened over a 3 month period, more than sufficient time for this infection to be diagnosed and treated.    She was 36 years old and left a 4 year old child behind.  Heartbreaking.

3. A retired RN who was an OR nurse in a local hospital, called me after I was in a newspaper article recently.  I had been quoted in the paper about the death of a new Mom who died of necrotizing faciitis within a week of giving birth to her first baby.  This nurse felt a need to tell me about her observations of 2 surgical cases involving NF during her career as a nurse. She described the surgeries to me in detail and they were horrific.  One was a nosocomial (contracted in the hospital) post operative infection and he died.  The other patient was transferred to Boston and he survived. She also told me about how her hospital hired people from a paper mill layoff, who were immediately placed in her OR.  They had no orientation, certification or experience.  They might have been a floor sweeper in the mill before they landed in her OR.  She was ordered to teach them to scrub in.  WHAT??!!  No training, no knowledge of sterile technique, no familiarity with anatomy, instruments etc.  Mill worker to scrub tech with nothing in between.  No wonder people are getting infected in that OR…and who knows what else is happening there.

The pain, grief and suffering at the hands of healthcare providers continues.  In some cases it is repetitive, untethered and unpunished.  It is horrible and unacceptable and although I am weary and disgusted that these things continue to happen,  I know I can never give up.  My heart breaks for these victims and their survivors.  I extremely grateful to  them for trusting me with their stories.

Things that I recognize in these three women’s stories are provider arrogance, dismissal of suffering and pain, lack of respect for patients,  secrecy, protection of one doctor by another,  lack of accountability, missed diagnosis and misdiagnosis, failure to rescue,  failure to fund appropriate safety measures and training, cheap labor,  license to continue doing the same harmful things over and over, no accountability, devalued life.  Where else in society does ongoing harm to human beings,  that sometimes causes death,  go  unreported, unpunished and uncontrolled.  Repetitive harm is criminal.  And those who continue to hide it are complicit in the crimes.

This has to stop.