Medical Error Interviews
Mike Eisenberg: To Err Is Human: A documentary about medical error and patient safety

Mike Eisenberg: To Err Is Human: A documentary about medical error and patient safety

September 13, 2019

The Sheridan family knows first hand the devastation caused by medical error.

Sue and Pat’s newborn son Cal, due to misdiagnosing his jaundice, was brain damaged. Cal now lives with significant cerebral palsy.

Years later, Pat was correctly diagnosed with cancer, but for 6 months a pathology report failed to be communicated to the doctor or Pat. Pat died of cancer at age 45.

In this episode of Medical Error Interviews, I chat with documentary filmmaker Mike Eisenberg about his film To Err Is Human and about the Sheridan family and the state of patient safety.

Mike is the son of late patient safety pioneer Dr John M Eisenberg, and as you will hear Mike say, when he started looking into medical errors and patient safety, he felt compelled to carry on his father’s legacy.


Mike Eisenberg Show Notes

Following his Father's footsteps
Mike was born in Philadelphia - childhood mostly in Maryland - but as a child was not interested in health care, even though his father was a patient safety advocate - as documentary filmmaker he wanted to tell stories otherwise not seen - fiction is harder and more expensive to make into film - the documentary path led down the path to make "To Err is Human"
About 3.5 years ago it started with a short film on AHRQ: Agency for Health Research and Quality, the organization Mike's father started and was the Director until he passed away in 2002 - there was annual debates over AHRQ's budget and attempts to slash it - but AHRQ has far less money they should given their role
Started the documentary by driving to DC, pay out of pocket, and interview his father's old colleagues about AHRQ's role that the public knows nothing about - themes of medical error, patient safety and improving care emerged - it was evident to Mike that conversation was no longer being had - if felt to Mike it was his responsibility to carry on his father's work
We, including his production partners Matt Downe and Kailey Brackett try to stay positive in tone and show what happens when people take this seriously - focus on the process to make things better
Report in late '90s titled To Err is Human, Building a Safer System - a report that used research that determined how bad medical error was - the data was shocking - it said 44,000 to 98,000 died each year from medical error - that was brand new concept, made new headlines, President Clinton said it would be tackled
At the time, those numbers were questioned - but today one study, Marty Macquarrie out of John Hopkins that says 251,000 die each year - and John James's study that says between 240,000 and 440,000 die each year from medical error - hard to quantify because CDC (Centre for Disease Control) doesn't have a box to tick for 'death by medical error' - even conservative estimates have medical error as 3rd leading cause of death
We compare how many plane crashes, 7 or 8, would happen each day to equal medical error deaths each day - a staggering number, almost the same as the opioid epidemic - the important question is not accuracy of numbers, but how to get accurate numbers
The Sheridan family and medical errors
There is not a consensus around medical error death numbers - sometimes people die at home from hospital errors - part of the reason we've not seen more solutions is that the public, especially Americans, have been trained to treat the medical system: that physicians don't make mistakes, they are right all the time
The real reason we've not seen change in patient safety is because physicians have not embraced the patient in this process - some health care systems have, they visited over 250 health care systems - many of them doing interesting things to help curb error, but only a few have really engaged the patient
If a Hospital engages patients in a patient safety process, then the Hospital is admitting it makes mistakes, and that admission is considered guilt - but Med Star Health, especially out of Georgetown, show promise: they had a public facing explanation of an error that was prevented - great message that most of these errors are preventable
It is easy to say to public we are humans too and make mistakes, and most are not egregious or intentional - most hospital surgeries have a practice called 'stop the line' and reasses if things are organized correctly, a bean counter will say it is not efficient and costs money, but it costs less then lawsuits
Regarding body cameras worn by physicians for patient safety, Mike considered including that aspect but thought it was too touchy subject - solutions for other societal problems can be embraced by health care - aviation is the most obvious, they interviewed Sully Sullenburger of the water landing in the Hudson River - vital health care takes a look outside its own walls
In Toronto we found a surgical team using video and other data to show when errors are most likely to occur and to use that data for better safety - 'hand offs' to other staff is obvious time things can go wrong
Improving patient safety is more than preventing law suits - the real 'bottom line' is about lives not profit - we expect health care to do what it is supposed to do and not cause new problems - what's important is communication with the patient
One of the stories in our film is about Sue Sheridan - her family experienced 2 medical errors - the 1st was her son Cal who has cerebral palsy and got that at 5 days old because of a small over sight by not performing an available and cheap test when he was born with jaundice - the other case is about the father Pat who was diagnosed with cancer - they thought it was benign but sent sample for pathology examination
Aviation Culture vs Medical Culture
The results showed it was malignant, dangerous and needed to be removed - but those results didn't get through for 6 months because it was an over looked fax - so Pat didn't get treatment and died of cancer - but what doesn't go on the death certificate is that he lost 6 months of treatment
Organizations like the Society for Diagnostic Error in Medicine (SDIM) is leading the charge on diagnostic errors
The biggest difference between airline industry culture and medical industry culture is the lack of transparency of the latter - recently an airplane window cracked and fell off and sucked a woman out the window, that was the 1st aviation accident that lead to a death in years - studies have found that most plane tragedies are not accidents
Recently Boeing had 2 large plane crashes and they've been open about determining what went wrong and how to fix it - the same thing should happen in health care
In aviation pilots have to re-take their test every 5 years to prove their competence - don't do that with driving cars, just give licenses when people are 17 and assume they'll good for the rest of their life - same thing with health care - we need to be honest about where health care is weak and where it can be improved
In aviation, airlines work together globally to improve safety for all airlines - but this is not the practice in most hospitals - but there are exceptions that share their research and date like Inter Mountain Heath Care in Utah, and some in Boston that have embraced imperfection - when an error happens they gather the team to learn how to prevent it in the future, as opposed to how avoid bad PR (public relations), or blaming someone and firing them - that's not how you fix the problem
In the documentary, Sue's family engaged in litigation, they 'won' in one instance of medical error, but not in the other - Mike chose not to focus on the litigation angle in the documentary - for the medical error to Sue's son, they did not get a resolution - Sue has turned her entire life into advocacy - one of her achievements is that the test her son should have received - bilirubin - is now a requirement
For Sue's husband's medical error - been about 18 years since her husband died, and the hospital recently had a screening of the documentary and a panel discussion afterward - the first time the hospital had openly discussed the case with its own staff - the pathologist had told Sue that it was not his responsibility to make sure the info he sent got through to the receiver
Physicians have highest suicide rate
The US will have a shortage of physicians by 2024 often due to burnout - because they are also enterpreneurs - they have one of the most challenging jobs in the world
Physicians have highest suicide rate of all professions - rampant in physician culture, especially clinicians - Mike's friends that are doctors are over worked and its scares him - they needed to be treated right - but its hard to expect humans to be perfect all the time when they are not treated that way - when things go wrong, the hospital worries more about its image then the people, its a systems vs people problem - it promotes volume and that is not conducive to reliability
Mike calls upon patients to be a voice, its not just a hospital problem - don't have to go to school for many years, just need to listen and look - can avoid a lot of these mistakes if they listened to patients, and patients felt empowered to engage
Re physician suicide, it is an individual choice - wouldn't be surprised if financial problems are a factor - many start with 6 figure deaths, have families, and witness trauma every day, its a tough job - Mike has screened his film a lot in hospitals and he hears staff worried about losing job if point out errors - there is heirarchy in health care that is not healthy - old gaurd is not embracing new reality
One hospital claimed they had solved physician burnout by mandating that there was at least 6 hours between shifts - but that is still not reasonable - lessen to learn is suicide is individual, but common is that they feel their profession is not respected, appreciated - the message is that its been working for 70 years, why change now - but now is the time to change to take patient safety seriously
Fixing patient safety is about how care is delivered, and how we treat health care workers
In aviation, they do not permit pilots to fly if they haven't had a specific number of hourss of sleep, or if they've had even one drink of alcohol - some hospitals have similar standards, but why is that not a federal mandate? The Agency for Healthcare and Research Quality (AHRQ) is important to learn where to get better - but not much done with that info because they are underfunded but could cause huge change
This is not new issue, its been around for 20 years - need to have discussions about access to care, about diversity and care - but they are only improved if thought from a patient safety perspective
Media and its messages
Aviation has done it well because they've collaborated globally, but in the US hospital are autonomous and its hard to develop a plan that all will follow - while aviation has an organization that investigates crashes, that doesn't exist in health care - why is that not happening in health care? Because one person dies at a time.
In aviation, they 2 or 3 hundred at a time and those stories are on all the front pages - but when someone dies from communication breakdown there isn't the same collective impact or response - it boggles the mind
Since his documentary released, seen a documentary on HBO called Bleed Out, made by a comedian who tells about his family's experience with medical error over the years - also Bleeding Edge on Netflix about tthe FDA's lackadaisical approval of medical devices - 3 documentaries coming out in 1 year is progress - but how to make progress on the national stage? Mike working collaboratively on a project to put patient safety on the map
Media has a responsibility in patient safety too - Mike says every day there are 4 or 5 stories on gun violence in Chicago, where he lives - and that problem persists despite local government action to fix it - in health care errors will always occur, but can learn from errors to prevent future harm - but to fix the problem requires engaging the public
Media is hugely responsible for what people care about - the media has all the power about what people care about - essentially telling the political atmosphere what it should care about - Americans choose what they want to protest about - we need a better way to show the scope and scale of medical error without blaming doctors and nurses - there is no villain in patient safety - malpractice is different from patient safety
We need a villain, somebody to blame - last year at Vanderbilt, a nurse was thrown under the bus for making an error that resulted in death, but it was actually a system failure that allowed her humanness to make an error, it was not her fault - instead of the hospital changing the system, they throw an employee under the bus, and she went to jail - then we wonder why people don't report errors when they see them
A culture shift in health care is needed, and it must come from the top - by working together we can send a message to 'the top' to make a change
Most patients want to be treated with honesty and transparency and will work together if something goes wrong - but that's not usually how it happens, it is usually a cover up, or denial, or this is how health care works and sucks to be you - but a culture of lawsuits has emerged as the way to get info out of hospitals - its not about money for most of these people
Less money, more transparency
In Sue's case, she sued for less money in exchange for greater transparency - we should get away from lawsuit culture and move toward working together
Mike has been fortunate to travel around the country to talk to people who knew his father {Founder of AHRQ} and sharing the film - a lot of people share the sentiment and passion he had still inspires them today - it is really cool as his son to hear that 17 years after passed away that he still has an impact on the health care system
Mike feels that a lot of the work that his father did - you can see clips of him on Youtube addressing Congress - is gone - don't why - was it because of his leadership, or because it was the right time? Mike thinks we need another leader who has the ability to bring people together - the way culture is set up, we need a celebrity - Dennis Quaid, famous actor, almost had his 2 sons die due to medical error and he made a short documentary and started a foundation
There are other examples, Serena Williams who nearly died due to preventable harm and racism - problem is 'medical error' is a very scary term and it is applied to all doctors, nurses, surgeons and it shouldn't be that way - there is resistance by the health care industry to embrace the terms 'patient safety' etc and not as an offensive term
Mike is proud of father's legacy, but worries that it has been forgotten by the people who spearheaded it in the first place - we need a superhero who can jump up and say these are issues we should be talking about
Mike is now balancing promoting To Err is Human and speaking at medical conferences and symposiums and screened the film hundreds of times - we need to go one person at a time, change one mind at a time
There will be a screening of the film in Ottawa on World Patient Safety Day {Sept 17th} and for the first time there will a free online screening of the movie - to find link for free online screening check out his website and through twitter @ToErrIsHumanDoc
Website also lists other screenings in local areas - if you're interested in hosting a screening for your community, contact Mike - they tried to make the film so it is a conversation starter - but this issue is not solved, so we need to remind people where we are at, so we can continue in the right direction
Connect with Mike
Twitter: To Err is Human @ToErrIsHumanDoc
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Elizabeth Hopkins: “Please kill me. Please let me die.” How patient shaming by doctors harms and kills.

Elizabeth Hopkins: “Please kill me. Please let me die.” How patient shaming by doctors harms and kills.

September 6, 2019

Elizabeth went to the hospital emergency department with intense abdominal pain and was shamed by the doctor for wasting his time.

A few days later, Elizabeth was in even more pain and started projectile vomiting - she returned to the hospital and they found what they missed the first time: Elizabeth’s bowel had ruptured and the infection had spilled out of her colon and she was in life-threatening sepsis.

Then Elizabeth’s health care got much worse. 

The doctor gave Elizabeth 2 options: simple minimally invasive laparoscopic surgery to drain the infection filled abscesses and let the bowel heal, or invasive surgery. Elizabeth asked for the simple procedure to drain the abscesses.

When she woke from surgery the intense pain felt like she had been cut in half - she begged the hospital staff to kill her to escape the pain.

Then she found out they had removed 10 inches of her bowel and left her with an ostomy bag.


Growing up with a parent with PTSD

Elizabeth's father was in the military, so they moved every few years - normal for her, but didn't know same people all her life - father was Military Police and Korean War veteran with PTSD (post traumatic stress disorder) - he had rages, inability to handle stress - fairly high up in military and investigated military suicide - he was hospitalized for a couple of weeks during the Korean War for 'shell shock' - lived on the sharp edge of his emotions
Be wary, be quiet - very quiet family, kids well behaved - {sound of ambulance siren in background} - Elizabeth says she is triggered by the ambulance siren that goes by several times a day - she's had PTSD since she was 16 - PTSD had gotten some better, but worse in the last 5 years since the medical error
Family moved to Ottawa when Elizabeth was 15 for a year before her father retired and they moved to Nova Scotia - Elizabeth went to university in New Brunswick when she was 20 - her Mom got sick and during Elizabeth's 2nd year, her mother was diagnosed with bowel cancer - both her parents would die of bowel cancer - mother battled for 4 years and 4 surgeries
Elizabeth graduated university and came home to work and care for her mother - Elizabeth worked as a reporter for a small town newspaper for 3 years, then a photo tech but kept connected to the newspaper - went back to school a couple of times, in 2011 to community college to take Information Technology - had been working with intellectually challenges adults and had a bad back with no chance of advancement
2014 Elizabeth got sick - working as a caregiver for a man with MS (multiple sclerosis) - and working another job and not eating much for about 3 months - August 2014 Elizabeth's bowel stopped functioning - a few days later started to hurt badly - no past history of gastro intestinal problems - Elizabeth was just a few years older than when her Mom was diagnosed with bowel cancer
The pain so bad she went to an emergency room (ER) - Elizabeth does have high blood pressure and arthritis but had never been sick - told ER she had pain in lower left abdomen - doctor said she had good bowel sounds and told her to go home and eat something, that she was only constipated - Elizabeth was relieved hearing she was going to be okay
Shamed by emergency room doctor
Elizabeth didn't really believe him because she'd never had pain like this before - doctor didn't do any blood tests or xrays, just sent her home at 11pm and and told her ER was for emergencies - Elizabeth felt shamed, like she was abusing the system
Elizabeth went to work for 8am - at about 3:30am Wed Sept 10th, Elizabeth woke up incredible pain and projectile vomiting - Elizabeth knew something was wrong, but also knew she had a 15 hour shift ahead - she went to work but spent much of the day laying on her client's bathroom floor vomiting - while also trying to take care of disabled client - Elizabeth in incredible agony and could barely walk - got home at 11pm
Elizabeth spent the next few days on her couch, thinking she should go to the hospital, but had been shamed - she couldn't eat - Elizabeth's roommate came home Friday Sept 13th - she asked her roommate to take her to the ER - they took some blood tests and xray - results showed diverticulitis - 'pockets' in the bowel where food / seeds can get trapped and cause infection and to be treated with antibiotics or can get sepsis and die
Elizabeth's white blood cell count was 28.02 and normal is 9 - but xray didn't show anything, and no surgery was mentioned - Elizabeth was given gastrograffin drink and told to come back in the morning for another drink of gastrograffin to prepare for a CAT scan
Resident physician took Elizabeth to small private room - he said CAT scan shows 4 holes in her intestine - he said can do 1 of 2 things: drain the abscesses and allow the bowel to heal on its own, or #2 is surgery, but he didn't say what kind - Elizabeth said 'the first option'
The abscesses were spilling infection outside her colon - they didn't say, but Elizabeth figured she had peritonitis because she had been walking around for 4 days with a ruptured bowel - Elizabeth was scared and thought about leaving the hospital - Elizabeth knew of a woman who had died of peritonitis induced heart attack within 12 hours of her bowel rupturing during a colonoscopy
Resident physician returns and says they will have to do surgery and need her to sign a form without further explanation - Elizabeth figured it was to drain the abscesses - and be done by simple laparoscopic surgery - Elizabeth could barely see because of pain - but could not see the form to read it, so she signed it
Begging to die
Nurse prepped Elizabeth and asked her some questions, including if she was wearing contacts lenses - they hooked Elizabeth up to an IV and gave her some pain killers and she waited 5 - 6 hours
They prepped Elizabeth for the surgery - asked if she had problems with blood products or allergies and confirmed she was at the hospital a year earlier for anaphylaxis - they asked if she was allergic to quinapril - anaethesiologist checked her throat and neck flexibility - but no one during all those hours asked Elizabeth if she understood what procedure she was about to undergo
Surgeon spoke to Elizabeth, shook her hand, a very nice man - Elizabeth felt calm, in good hands, and safe - the next things Elizabeth remembers is waking up feeling like she was cut in two - screaming, couldn't catch her breath, and tried to sit up - she couldn't see but could hear the anesthesiologist say 'No Elizabeth' - then people were holding her down, laying on top of her
"I felt like I had been cut in half horizontally" - Elizabeth remembers thinking it was like something out of a Stephen King novel - like a monster with claws cut her into twos - the next thing she remembers is screaming and crying and begging to die - 'please someone kill me, please let me die' - more pain than her ruptured bowel
Elizabeth knew something had gone horribly wrong - she was sweating from the pain - the nurse told Elizabeth that she had lost her sigmoid colon and now had an ostomy - a bag that is connected to accept waste from her colon
Elizabeth know also had an art line in her chest to put medications directly into her system - the nurse asked if Elizabeth was still feeling suicidal, that she must have had a reaction to the anaesthesia - but Elizabeth was still in a huge amount of pain and wanted death to escape it - her pain was not being managed
The nurse told Elizabeth she was emotionally overwrought when first brought into the recover room and asked if Elizabeth wanted to see a psychiatrist - Elizabeth's sight is worse because her dirty contacts are still in her eyes - Elizabeth also develops sepsis, she was already septic before the surgery - her white blood count was 25, which is very septic, but had been at 28 the night before
The notes from the CT scan did not mention a ruptured bowel - but the forensic report said she had one hole in her bowel - it could've been repaired with colonoscopy - but Elizabeth lost 10 inches of bowel - she was very septic and they pumped her full of antibiotics - her white blood cell count shot up to 36, 'critical'
Elizabeth so pumped full of fluids to flush out sepsis she couldn't bend her legs - but nobody told Elizabeth she was septic - a couple of young surgeons told Elizabeth that surgery went well - Elizabeth said she didn't believe in surgery and the doctor laughed at her and asked if that was a religious thing - they apparently did not know Elizabeth had surgery she did not expect
Only when Elizabeth got her medical records did she find out that her insestines had been glued to her peritoneum and had to be cut or burned off, a result of bowels bursting - Elizabeth does not have a spleen that was removed without her permission after a car accident, and that started her PTSD
Her instestines we glued to her liver, and pushing on her bladder, which was partially collapsed - it was bad and they had to do a lot of work - Elizabeth was in hospital for 11 days with infections needing IV antibiotics - the surgeon finally comes to see her and says they'll send her home next day - Elizabeth is happy but still in horrible pain
The next morning a different physician says that Elizabeth's white blood count is 11, and normal is 9, so they are iffy about sending her home - but they did with antibiotics and a bottle of morphine - Elizabeth spent 4 days at home in horrible pain and getting sicker and sicker - used all the morphine if first couple of days - and had to move to another apartment
Elizabeth calls a help line to speak with a nurse and tells her about vomiting and other symptoms - the nurse told Elizabeth to go back to the ER and was readmitted with a small bowel obstruction and the abscesses had grown, multiple infections, colitis and other things - kept Elizabeth for 2 weeks with IV antiobitics and pain killers
Elizabeth's health worsened because they had moved her from IV antibiotics to antibiotic pills - Elizabeth was released when the infection was under control again, 2 weeks later
Elizabeth was in shock for the first 3 months - she could have a conversation but couldn't think right - dissociative - couldn't believe this was happening to her, or had not been offered psychiatric help because she told them she was suicidal - when she told people she had surgery she didn't want, they dismissed her
Elizabeth had no depression before surgery, but sense of violation, like she'd been raped, caused suicidal feelings - those feelings not so strong now, but for 4 years Elizabeth woke up every day thinking "I want to die" - sometimes wake up in the middle of the night screaming - the trauma constantly replayed in her head - PTSD was overwhelming
Elizabeth may have appeared 'normal' to others, but she wasn't laughing like she did before - complelely unfocused, like in a dream - Elizabeth sees her GP a few months later and says to the GP "Look what they did to me" tells the GP she just wants to die, so the GP puts Elizabeth on antidepressants to try to keep her alive
Elizabeth has "tomophobia", a fear of invasive events that can be traced back to an unwanted splenectomy after a car accident when she was 16 years old, and had tried to escape the hospital then - Elizabeth had been asymptomatic for PTSD since 2009, but was re-triggered by the bowel removal surgery
In the late 70s, Elizabeth thought the concussion from the car accident was causing her anger and rage until she read about 'shell shock' symptoms of Vietnam War vets and thought their symptoms were like hers - but she didn't receive any support
25 years later and another traumatic event caused PTSD and therapy helped some - venting, talking and writing about it always helped - being able to take control also helps a lot - this last trauma has not been so bad because she's been able to talk about it and file a complaint to the Nova Scotia College of Physicians, but they didn't believe her and dismissed her complaint
Elizabeth didn't want any one to get into trouble, she justed wanted to know how and why it happened to her - the surgeon was not very honest, his report said he was surprised Elizabeth was claiming she wasn't properly informed, then descended into an ad hominen attack on Elizabeth's character and made her sound ridiculous and like a crazy person
Surgeon also wrote that Elizabeth had been diagnosed with a sexually transmitted disease, dyspareunia - this shocked Elizabeth, almost as much as waking up with an ostomy bag - but Elizabeth had blood tests that showed no infection - Elizabeth knew this was the surgeon trying to discredit her - Elizabeth asked the College of Physicians to ask for the notes the surgeon claims show an STD, but they didn't - more institutional betrayal
Elizabeth's GP received a copy of the surgeon's report - but there was nothing about informed consent - the GP tried to defend the surgeon - but Elizabeth pointed out they had 5 hours and no body talked to her about what procedure she was going to have
Elizabeth thinks they are good people, but too routine and easy to forget if no check list in place - this unwanted surgery is the most horrid inhumane thing any one has ever done to Elizabeth - but she feels conflicted: on the one hand, they were working to save her, and on the other hand, she didn't want bowel surgery
This should have been a 'never event' - it never should have happened - but writing letters and complaints has helped - Elizabeth likens it to Restorative Justice where the victim gets to tell the perpetrator how the crime has affected them
Making meaning (and cookies)
Having the College of Physicians dismiss Elizabeth's complaint and believe the surgeon's lies, makes her PTSD worse - Elizabeth just wanted him to accept responsbility - Elizabeth's brother is a lawyer and said suing is useless, only 2% find in favor of the victim - Elizabeth just wants people to learn from it so others don't have the same experience
Elizabeth is writing a mental wellness cook book using a lot of her Mom's old recipes - Elizabeth is also a graphic designer and will design the book and include information about mental wellness - people have been able to accomplish a lot in spite of mental illness - Madame Currie had depression, Veronica Lake had schizophrenia
A lot of the cook book is about depression and PTSD, but includes facts and figures, like countries where the suicide rate has decreased - her book is titled Mental Health Cook Book, she's illustrating it herself and is half way done - but it has helped distract her from PTSD
Elizabeth makes dinner each day for an intellectually challenged friend, and this adds more meaning and reason to live - Elizabeth has believed in the righ to die since she was 15 and her mother was dying from cancer - but also believes in the right to life, so both sides of the right to die debate
Elizabeth does not want to point fingers at specific doctors, she beleives they meant well - but what happened to her can happen to any one - sometimes PTSD can be so bad you'd rather die
Elizabeth is still healing physically, some lessened pain, and her bowel is working a bit better - emotionally quite a bit better, but she still has PTSD and will last a long time - Elizabeth tries to find the positives in things
Sometimes anesthesia can mess up a person's brain - Elizabeth was not depressed before the bowel surgery - but her PTSD has always been treatment resistant - but some people do respond to trauma therapy - Elizabeth finds writing it down both difficult and therapeutic
From Elizabeth's experience, anger - even justifiable anger - is darker and more malignant than any cancer - doesn't do any thing to person you're angry at, it destroys you - Elizabeth suggests video recording the informed consent - there was a doctor who lost her license for performing multiple surgeries and taking out body parts without getting consent - she had 27 patients with adverse outcomes
You can only make decisions based on what you are told - a doctor is only as good as the information that passes back and forth with the patient - and recording the informed consent is safety for the hospital and the patient
Connect with Elizabeth
Need an experienced counsellor for medical error, or living with a chronic illness, or LGBT issues?
You can book an online video counseling appointment with me, Scott Simpson, at Remedies Counseling.
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Paul Smith: How a somatization ‘diagnosis’ almost killed him

Paul Smith: How a somatization ‘diagnosis’ almost killed him

August 16, 2019

Paul Smith, an artist and self-described workaholic, for years experienced weird and increasingly debilitating symptoms, that would come for periods of time and mostly or completely dissipate.

Flu like symptoms, abdominal pain, muscle weakness, confusion - problems with his vision speech and balance - breathing problems where felt like he was suffocating

These symptoms were so intense that at times Paul felt like he was going to die, and so he wrote letters to his children.

Doctors dismissed his symptoms. Doctors labeled Paul with a somatization diagnosis, basically saying he wasn’t physically sick, just mentally. 

For years, every doctor Paul went to about his debilitating physical symptoms would see the somatization diagnosis on the front page of his medical record, and dismiss Paul’s symptoms as being in his head.

Then Paul developed a massive abscess next to his bowel and developed life threatening sepsis. The doctors couldn’t dismiss those facts. Paul received antibiotics for the sepsis and his other symptoms disappeared.

Yet when that treatment ended and Paul fell sick again, the somatization diagnosis preceded him to every doctor and once they saw that label, any of Paul’s physical symptoms were dismissed. 

But Paul did not give up. Eventually he found a couple of doctors - his ‘heroes’ - and he was finally and correctly - after 20+ years since the symptoms started - diagnosed with D-Lactic Acidosis, which is an over growth of bacteria in the gut, flooding Paul’s body with its neurotoxin.

Paul thinks many other people with other diagnosis like ME/CFS or somatization, may also have bacterial over growth in their guts.

Paul had to fight for years to get the harmful somatization label taken out his medical file. That label prevented Paul from receiving appropriate medical testing and treatment for years and Paul contends that the somatization diagnosis is in effect, a human rights violation.



Fit, healthy and productive until...

Paul - very health child in Cheltenham (UK) - not into sport during school, but got into weight lifting as an adult - went to a very good school, good teachers
Studied art, European history, and sociology, A Level - later in his 30s did his degree in Fine Art, sculpture - but got an electronics job out of school - Foundation course important
After college started to have problems for the first time - different ways Paul could have developed chronic fatigue or ME (Myalgic Encephalomyelitis) leading to D-Lactic Acidosis because he re-built 3 houses and exposed to pesticides - when he got really ill in early 90s - sprayed his loft with pesticides and that's when he had problems from that point - started cleaing up the loft space - had been treated many time over the years
House built in 1840s so lots spraying - when Paul got a broom to sweep up dust and debris he immediately fell ill - also using NSAIDs (nonsteroidal anti-inflammatory drug) during this period - symptoms fatigue, muscle pain - abnormal fatigue after activity - NSAIDs affect mucosal lining of gut and healing of gut - inhibit different synthesis - taking NSAIDs during working, rebuilding house, and working out
Bit of workaholic - damaged both shoulders and collapse a disc - at this point encountered the pesticides - a number of things contributing to his illness - using NSAIDs to push through and mask the pain
Developed bowel perforation with sepsis with D-Lactic Acidosis symptoms: overgrowth of bacteria in the small intestine - sounds benign but isn't - Paul thinks there are many different types of bacterial overgrowth - like IBS - gut bacteria produce metabolites like D Lactic Acid - produces a neurotoxin D-Lactin would explain neurological symptoms in a lot of people
Paul had been diagnosed with chronic fatigue syndrome and ME, but he believes bacterial overgrowth may be affecting others with those diagnoses - Australian researchers found high level bacteria in ME patients
Fell really ill in 1999 - developed infection and D-Lactic symptoms at same time - hard to tell apart in early stages as D-Lactic feels like infection - flu like symptoms, abodominal pain, muscle weakness, breathing problems due lactic acid in blood - visual problems, confusion, speech problems, balance problems - symptoms can fluctuate - can disappear and don't know why
Entering Hell
Symptoms so bad "thought I'd entered Hell" - expecting to die or commit suicide to escape suffering - only reason Paul didn't was because of his children - but had written letters so his children would know why he had committed suicide
Before got really sick in '99, medical system mostly useless - Paul did have raised CK (creatine kinase) levels - but given somatization diagnosis by psychiatrist even though had raised ALT levels
Raised CK shows muscle or heart problems - raised ALT shows problem with liver - Paul believes that a somatization is a human rights issue because an unreasonable diagnosis because its based on any one experiencing multiple changing symptoms with a period of 2 years - they are basically saying "if they can't find it, you're the problem"
D-Lactic Acidosis causes multiple changing symptoms - but when give a somatization diagnosis, doctors don't have to search for other causes and patient conveniently swept under the rug - they tell you your brain is manufacturing the pain and the symptoms - Paul was shocked, upset, scared with that diagnosis because he was so sick
NSAIDs caused a massive abscess next to his bowel - damage to mucosal lining and his lower bowel perforated but not found until 2003, more than 3 years since sepsis - then difficult to treat, still infected in 2006
Paul noticed his symptoms would abate when he took antibiotics - this was a clue D-Lactic Acidosis was causing symptoms - but could be treated with same antibiotic (metronidazole) that helped with sepsis - Paul kept telling them from 2003 that he had some other kind of infection even after sepsis eradicated
Paul's doctor noted for emergency doctors that Paul was 'drunk not drunk' because this were D-Lactic symptoms and not somatizing - but 'somatization' label was in his health record and took to 2017 to get it removed - had to fight hospital continuously to get it corrected even after they found the abscess
People with multiple changing symptoms will get somatization diagnosis - a highly prejudicial diagnosis - this is where it becomes a human rights abuse
0:30:45 Psychiatrist (MD Allen J. Francis) has written a lot about misdiagnosis - he wrote "Mislabeling medical illlness as a psychological disorder" - he has blog that outlines harm from somatization


Brother's betrayal

0:31:30 Paul had a good doctor who said he wasn't somatizing but other doctors took the somatization label seriously - in the UK there is a document called Your Significant Medical History - the first document a doctor will see, highly influential and prejudicial - Paul steered clear of psychiatrists and was not sectioned
0:32:45 Paul was left in danger because of somatization label - he had a sepsis infection with periods of shock - but D-Lactic symptoms really serious with breathing issues, felt like Paul was suffocating at times - can have normal oxygen levels in your blood because D-Lactic affects mitochondria
Couldn't work - if Paul tried his energy levels would crash quickly - breathing problems, weakness, very ill - remembers trying to do things when he was ill, dizzy - Paul partially bought into the idea he must have psychological problems because that's what the doctors kept saying - so he kept pushing his body, making himself sicker - could end up in bed for weeks - had oxygen tank at home - but couldn't recover
Paul's brother is a doctor - he told everyone in their family that it was all in Paul's head and they all turned their backs on Paul - he was shocked how people treated him when he fell ill, even when he went asking for their help - people would just ignore him
But Paul did have a good doctor who believed Paul was physically sick and got him to see neurologists but they just said it was somatization - 2 of them noted that he had D-Lactic illness but did not comprehend - D-Lactic Acidosis is a hidden problem - normally associated with Short Bowel Syndrome
Dr Luke White gastroenterologist believes D-Lactic Acidosis is much more common then being diagnosed - Dr White believes that any one with bacterial over growth can develop D-Lactic Acidosis - Paul says a lot of people with ME/CFS have bacterial over growth - and still much research to be done
Paul eventually got a diagnosis from Dr Malcolm Hooper and Dr Sarah Myhill - but NHS (National Health Services) cut off Paul's benefits before Dr Myhill could order the tests - Paul considers both doctors to be his heroes - and wouldn't have made it without Dr Hooper - Paul positive response to antibiotics was the clue to D-Lactic - when his GP retired he left Paul a big supply of antibiotics to treat himself - and Paul realized he was on his own and started to investigate


Expecting to die

By 2016 Paul was expecting to die as he was developing reistance to the antibiotics - very worried so looked further - found D-Lactic Acidosis by chance after a conversation with Professor Hooper about fermented gut - when natural gut bacteria build up in small intestine they cause production of D-Lactic and imbalance occurs
Antibiotics failing, Paul had written his will - but in his research he found a list of symptoms for D-Lactic Acidosis and knew immediately that is what he had and made an appointment with a D-Lactic specialist - Paul took his records and symptom list and his positive response to anitbiotics
Specialist quickly diagnosed Paul and said it may have been the cause of his symptoms for the last 20 years - Paul was given a diet that restricted consumption of carbs and sugars thereby decreasing production of D-Lactic neurotoxin - so can control symptoms without antibiotics
A number of auto immune illness patients also do well on low carb / sugar diets - Paul says D-Lactic can damage the gut causing auto immune problems - Paul says D-Lactic is an infection, but doesn't raise your temperature because they don't get into the blood stream like a normal infection - but the metabolites do exit the gut and cause symptoms - but small quantities will damage mucosal lining and cause an immune response - bacterial overgrowth may be causing a lot of problems
Antibiotics can select for certain types of bacterial over growth - they can also cause over growth through resistance - treating live stock in our food system with antibiotics can also 'train' bacteria to be resistant - high carbs + antibiotics + NSAIDs maybe contribute to bacterial over growth
Paul was able to use antibiotics until he became resistant - antibiotics are primitive way of dealing bacterial over growth - he's hoping to get a fecal transplant to completely reverse the condition - he's had some temporary success with probiotics, but it is complex and he needs help, but is not getting it from health system
Just E Coli has both helpful and unhelpful forms, so too do gut bacteria - but nobody explored and mapped gut biome - Paul has to do own research just to keep himself alive
Lucky to be alive
Paul believes D-Lactic Acidosis may have already caused some deaths since it is a multi systemic neruological illness - Paul is fighint the NHS and the Hospital - he's asked them to investigate but they don't want to - the local NHS is fighting Paul tooth and nail - and his brother / physician believes his doctor colleagues somatization label in spite of acknowledging they only get 10 minutes with a patient - the somatization label negatively impacts subsequent health care
In spite of abnormal blood results, 2 psychiatrists labeled somatization diagnosis - making life difficult and no doctor would take Paul seriously, even in emergency room - other doctors requested blood gas testing but it was ignored for years because of somatization label on front of his medical records
Paul was very 'lucky' to get a proper D-Lactic Acidosis diagnosis, very lucky to have met Professor Hooper - Paul believes others will also have been misdiagnosed - people with IBS and other bacterial growth as some Australian researchers have found
Getting D-Lactic Testing is 2 stages: first is testing for bacterial over growth from a gastroenterologist - symptoms would include bloating, burping, production of a lot gases, abdominal pain, and problems from food with carbs - Paul needs to keep his carb consumption low
2nd step far more difficult - Paul is one of few who has been diagnosed - so will have to be pushy with gastroenterologist for further testing for D-Lactate - possible through Dr Sarah Myhill - definitely worth the expense - and ask for D-Lactic gastrenterologist specialist
Fecal matter transplant is using 'poo' from a healthy super donor to put back into the ill person's body the healthy bacteria - Paul hopes to pursue it and has done some research and there are cases of reversal via FMT - Paul is getting further testing - and is pioneering his own diagnoses and treatment
Paul has had to transform himself from a sculptor to a medical researcher - Paul says a lot of other people also unwell so he's trying to get as much info out to others
Paul thinks there other forms of bacterial over growth beyond D-Lactic and its metabolites - that research needs to be done so others can get diagnosis and treatment
Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
Microbiota Transplantation for Fibromyalgia: A Case Report and Review of the Literature
Medical Illness As Mental Disorder
Felicia Mahmoud - White Coat Terror Victim

Felicia Mahmoud - White Coat Terror Victim

August 2, 2019

In this episode, I interview Felicia Mahmoud, from Indiana in the US. Felicia’s story begins with a minor injury from her athletic lifestyle.

Now imagine you’re Felicia - and you’re having very minor surgery on one of your ankles to remove a suspected cyst, a small pimple size cyst.

Unusually, there is a medical device sales rep observing your non-medical device surgery.

Imagine you wake to find the doctor has cut away a huge chunk of your calf muscle. On both legs.

Imagine you find out the doctor has implanted mesh devices in both your legs. Devices that were not designed to be inside the human body.

How would you feel? Betrayed? Angry? Frightened? Maybe all that and more.

I recently chatted with Felicia about her experience and how she’s dealing with the aftermath.

Watch the video version by being a Premium Patron:

A caution that some may find Felicia’s health care experiences distressing.

Felicia's twitter images:

  Felicia_pic.jpg  Felicia_twitter_image.jpg



Felicia: Personal Trainer with Athletic Injury 


Felicia was very active - got her degree in Exercise Science, then Personal Training Certification with American College of Sports Medicine - working at a gym - 2 year old daughter - ended up getting an injury common to athletes called Compartment Syndrome (CS) - a condition common in endurance athletes, a vascular condition - like an over-blowen tire, usually bilaterally in both legs

Pressure in muscle compartment, causes swelling, can cause nerve damage if not treated - 2 versions of CS in athletes: acute and chronic - acute can be life and limb threatening, but athletes usually get the chronic version - usually reversible with simple procedure - Felicia symptoms were tightness, pain, pinched nerve - hard to stand for even 10 minutes, otherwise a lot of leg pain - believe damage was too tight roller blades
Can take 1 - 2 years to get diagnosis - pressure testing for diagnosis of CS - Felicia had very high pressure indicating CS
Treatment is like peeling an orange and the thin white skin is like the fascia covering the muscle - procedure is to make a small slit in the fascia to relieve the pressure - reversible condition, 90% success rate - Initially (before CS diagnosis), Felicia had small pimple size point of pain on her leg - thought it may be a small cyst - found a doctor that agreed
Doctor / podiatrist has Felicia in for surgery for cyst removal - but had not been diagnosed with CS yet, assuming this 'cyst' is causing all her leg pain, just above her ankle - Felicia found out later that he didn't even think she had a cyst - also found out later that a 'mesh wound care vendor' was at her surgery and wondered why a sales rep would attend her surgery?
Day of surgery, Felicia asked to sign 2 forms: one for cyst surgery, and one for sales rep to attend surgery - Felicia read the form and it didn't say any thing about changing or implanting any thing, just that he would be in the room - Felicia reinforced that she was just there for the small cyst removal - nurses put Xs under procedure line so that nothing could be added later - witnessed by hospital nurse
Felicia confirmed that they were not doing any thing beyond cyst removal and the doctor nodded his head, but glared at her - Felicia's husband noticed and said to her 'you're making him mad' - Felicia thought she could walk out, but already in gown, and lots of people, what could go wrong?
Felicia's leg 2 days before surgery
Minor Surgery. Major Assault
In the small print of the form it says that nothing could be done without her consent unless life threatening emergency - Felicia walks up from surgery and half of her calve is missing, a health muscle, on both legs - doctor said it was his opinion the muscles were too big, so he cut them down
There were 2 surgeries - and the mesh product has been implanted in both legs - gets more creepier and bizarre - there is a hole in her leg - but has 2 incisions in her leg so that he can charge her insurance more for additional surgery - he doesn't get paid extra if he uses same incision - Felicia assumes he cut her other leg so he could charge for that as well
The surgery he performed doesn't really exist - at home Felicia could see all the incisions, called to the hospital immediately, and in a lot of pain - the hospital put the doctor on the phone and he was nasty to her - told her to schedule an appointment to discuss what he did and if she'll recover - 2 days later she met with the doctor and he had his nurse in the room to intimidate
Felicia asked her husband to turn on his audio recorder - doctor lied to saying Felicia has accessory muscle - justified surgery since Felicia is young and fit and would heal quickly - but weeks later having a problem with one leg where mesh was implanted - he started acting bizarre and wanted to remove it in his office
He seemed very impulsive, intimidating at times - Felicia called hospitals to say she wasn't comfortable with this doctor, but because post-operative care is free, no other doctor wanted to take over her case and not get paid - so she had to keep going back to this doctor - Felicia couldn't find the procedure he performed on her - he just made it up - even the product he put in her leg, is only supposed to be used topically, not intended to be used - or sold - for under the skin
Felicia continues to have problems - the doctor could be charming, maintain composure, but a convincing liar - sounds like he's very caring, but its false - she believes he's an expert con artist - probably done it to other patients
Felicia asked for physical therapist, but he says no - but he writes in his report that she declined conservative treatment - but Felicia was recording the convo - there was no antibiotics, or steroids to treat a reaction to the mesh - no imaging or blood test to diagnose reaction to the mesh - Felicia still believing he knows what he's doing at this point and he schedules her for another surgery
Felicia's leg after surgery
Experimental Guinea Pig
Surgery to remove mesh from one leg and will improve scar tissue - she comes out of surgery with a carving in her leg the shape of the implant - a perfect square - she thinks he carved square into her leg as way to punish her - Felician finds out the mesh is a bovine product that can't even be removed
Felicia asks for pathology report, but there wasn't one - he didn't send any thing to pathology - no record of any thing removed - she questions his behaviour - perhaps he's a sociopath
Felicia had been complaining to the hospital about the doctor - she didn't know the hospital was telling him she was complaining - hospital kept defending the doctor
Felicia asked for copy of consent form - but the copy in her chart is blank, only the doctor's signature, not her signature - Felicia recalled that the nurse had a funny look on her face just before surgery - Felicia suspects the doctor switched the consent forms to include an option to remove muscle - nurse held the form up for Felicia to see but not hold, placed it down and left the room - the doctor comes in and proceeds with surgery
When Felicia awakens she finds she has carvings in her leg - Felicia since asked herself: Why didn't the nurse hand her the form?
Felicia has an attorney - Felicia is convinced the doctor did it intentionally so hard for lawyers to understand his motive to intentionally harm - but turns out the doctor has other lawsuit against him for doing procedures outside the scope of his practice
The doctor contends he removed extra muscle and Felician questioned if it was due to Compartment Syndrome, as that would explain the swelling - the doctor admits that he considered CS - Felicia asks herself, but not the doctor, why he didn't do the standard CS procedure
The attorney was also baffled why a doctor would do something like that - he ripped out healthy muscle of a young and athletic woman - operated on both legs with multiple incisions - Felician feels violated and has launched a lawsuit
Doctor has been in practice over 30 years - but no reviews online when Felicia researched him before surgery - no indication or warning flags - she thinks he should be in jail
Compartment Syndrome (CS)
Intentional Harm. No Error Here.
Terrifying waking up every day - emotional toll - frequent nightmares - every day is a reminder of disabling surgery for nothing - did finally get proper CS surgery, but still dealing with aftermath from harmful surgery
Felicia not sure if mesh is actually taken out - but the doctor had to have intentionally done something to make the square shape in her leg
Because mesh was made topically, not under the skin, so long term effects of mesh not known - doctor was trying to make a sale
Subsequent surgery has repaired some of the damage - but if had proper CS surgery she wouldn't be missing muscle and have tendon surgery - but has permanent disfigurement to her legs, pain every day, can walk, but cannot stand in one place for long - cannot do personal training business - instability in ankle muscles is ongoing concern - can only do sit down jobs now
Felicia says that if a shark bite part of her leg off she could accept it, but to be a medical experiment causes anger - "who does he think he is?"
Felicia feels angry - was also hard for her husband to initially understand the doctor would do such intentional harm
Dehumanizing to take part of a person without their consent - hospital tries to shut down her complaint, dismiss it - the doctor still working there - maybe his reputation takes a hit, but they manipulate the online reviews
Felicia advocates on social media - but hard to be advocate and traumatized person at the same time - but thinks it takes a lot of people getting the message out in different ways - still a long way to go, but getting some momentum
Surprised nobody talking about this issue online - not much about fraud and abusing patients, vs framing as an error or mistake - Felicia wants to bring about accountability
Compares driving a vehicle responsibility same as surgery responsibility, but the system does not treat them the same - should be criminal negligence in her case - not just a small fine for the harm they've done. 
Medical abuse = criminal negligence?
I checked in with Felicia a few days ago.
Felicia writes:
The injury is actually worse now as when they tried to remove it (scar tissue) nerve damage occurred.
But my original injury the compartment syndrome is reversed but I’m left with the damage he caused.
I actually close my eyes every time I open my twitter page so I don’t have to see what happened to my legs because they look totally mutilated.
You can connect with Felicia on twitter: @WhiteCoatTerror  End White Coat Worship 
To watch video versions of the podcast interviews, you can support the podcast be becoming a Premium Patron at
For counseling support, you can book an online video counseling session with podcast host and counsellor Scott Simpson at
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Donna Penner: Every surgery patients nightmare: Awake during surgery. “Scalpel please”. And the anesthesiologist has left the OR.

Donna Penner: Every surgery patients nightmare: Awake during surgery. “Scalpel please”. And the anesthesiologist has left the OR.

June 13, 2019

Donna Penner was having routine surgery but something went horribly wrong and  through the failure of her anesthesiologist - Donna was awake during her abdominal surgery, but also paralyzed so she couldn’t tell the surgical team. Donna could feel every excruciating scalpel cut, and the surgeon moving her internal organs around.  


In torturous pain, and suffocating through lack of oxygen, Donna resigns herself to death and mentally says good bye to her family. But the surgeon notices Donna’s heart rate is very rapid and she can hear him ask the anesthesioligist why Donna is in distress. 


Donna feels a sense of relief that the surgeon has noticed and that she is about to be saved from death. But then she hears the nurse reply that the anesthesiologist has left the operating room. 


The surgery continues, the excruciating pain continues, the suffocating continues - as death nears, Donna has an out of body experience and is immersed in warmth and safety and she welcomes its sweet embrace.


But death does not come in that moment, and Donna finds herself in her body again - with the pain and suffering.


But the medical errors do not end there - as the surgery ends Donna can’t believe she has survived, but her breathing tube is removed prematurely and Donna’s paralyzed body cannot breathe on its own and she starts to suffocate again - the nurse yells at Donna to breathe, but she can’t….



I wish I could say Donna’s trauma from the medical system ended after the botched surgery, but as you are about to hear, Donna’s experience with a system designed to protect physicians and undermine patient victims adds another layer of trauma onto her life.

 Follow Donna on twitter 




Donna grew up on a farm in Manitoba, Canada, middle child of 3, cows, dogs, cats, hogs - very happy childhood - raised to be responsible, honest, hard working, good values and qualities - parents did a good job


Donna's health care error started several years ago when she had abdominal pain and went to the local clinic - kept for 24 hours they didn't know what was going on - but transferred Donna to another hospital - had laproscopic surgery scheduled


Donna has had surgeries before, anasthetic before no problem - but feeling anxious this time and asked for sedative and was refused - the first thing that went wrong - taken to operating room (OR) and prepped for surgery - anesthesiologist said to Donna take a deep breath and Donna 'was out'.


The next thing she remembers is waking up and hearing sounds in the OR and thinking 'good it's over' and know I can feel relaxed and don't need to feel nervous any more' - and then the surgeon spoke and what he said haunts Donna to this day: "Scalpel please." - then Donna felt the first incision - excruciating pain, beyond description


Donna tries to alert surgeon and staff that she is awake and tried to scream - but couldn't open her mouth - couldn't sit up - realized she's paralyzed by the paralytic medication used for abdominal surgery - so the anasthesia did not take effect, but the paralytic did - Donna could not scream or move but could hear her heart rate on the monitor as it sky rocketed to 147 according to the surgeon (later) - Donna starts to panic - trapped in body and couldn't do anything.





As Donna heart rate quickens, she needs to breath faster to supply more oxygen but she couldn't take a breath because she was intubated (tube in her throat to ventilator that breathes for her) - but the ventilator set at 7 breathes per minute, but what Donna needed was much more - so she felt like she was suffocating


"She's in distress, she's in distress" surgeon says, asks anasthesiologist what's wrong - a nurse replies that the anasthesiologist is not in the OR anymore and doesn't know where he is - Donna panic increases - surgeon tells the nurse to find the anasthesiologist immediately - Donna's hears the nurse leave the OR - after what felt like an eternity, anesthesiologist returns - Donna feels relieved that he will realize she's not unconscious and will save her from the pain


That did not happen - anesthesiologist gave her another medication via IV, but did not make Donna go back to sleep - for the next 90 minutes Donna felt the surgery happen - insertion of instruments into her abdomen, exploring, she could her the surgeon comment as he looked at her appendix, kidneys, colon - the whole time Donna is experiencing excruciating pain while he pushes her organs around


Donna hears the surgeon exclaim that there is a lot of blood, and this is not good - Donna continues to panic and wonders why they are not noticing she's in trouble - Donna didn't think she was going to live through it - the pain was so bad she thought she was going to die - this is every surgery patients nightmare 


Donna thought about her kids, her husband and worried that if she died they would never know what her last few hours of life were like, the pain and torture - Donna resigns herself to death and says her mental good byes to her family - and ask God to take her away from the agony and pain of surgery.





Surgery ends and Donna feels relief that she survived the surgery, but she's still in an immense amout of pain - Donna notices she can mover her tongue a little bit as paralytic wears off - starts to wiggle breathing tube in her mouth to get their attention - anesthesiologist noticed and he removed the tube from her throat - but Donna is still paralyzed and cannot breathe and starts to suffocate and realizes she's about to die - the nurse starts telling Donna to breathe, but Donna cannot breathe


Something amazing happens - Donna has an out of body experience - she could hear OR sounds, voices - in a place somewhere between heaven and earth - Donna could feel a presence and felt it was God with her - her fear left, the pain was gone, it was warm and she felt safe and protected - Donna smiles when she thinks of this - at this point she knew she would be okay whether she lived or she died


Donna prayed and asked God to take her - she heard a voice that said she would be okay - that was reassuring - Donna gets very emotional when she thinks of that - Donna hears the anesthesiologist say 'bag her, bag her' and put a mask on her face to force air into her lungs - immediate relief with oxygen - lungs were on fire - anesthesiologist gave her another injection, a paralytic reversal and within a few minutes Donna started to regain movement


Donna moves her head side to side to get their attention - nurse asks anesthesiologist why Donna is doing this, anesthesiologist says he doesn't know


"I was awake, I felt him cut me" were the first words Donna was able to speak - 2 nurses and anesthesiologist in room, but they had shocked look - Donna repeated herself and told them what she heard during the surgery - but 2 nurses and anesthesiologist did not say a word - Donna realized they were not going to even acknowledge what she had said, a wall of silence went up


Donna asks for husband Brian but he was not allowed until Donna was in recovery room and tells him immediately what happened - Brian tells nurse they want to speak to anesthesiologist immediately - nurse says anesthesiologist has already left the hospital - Brian says 'I don't care, you go find him, bring him here' - a while later the anesthesiologist walks into Donna's room





anesthesiologist has papers in his hand with portable table and shuffled papers - did not make eye contact with Donna or Brian - Donna tells him her experience - anesthesiologist shrugged his shoulders and said 3 words "It happens sometimes" and left the room - Donna and Brian shocked 


Scott says 'invalidated trauma deepens trauma' - Donna says it is secondary harm - just as traumatizing as original trauma itself - felt like she didn't matter, no big deal for anesthesiologist - Brian asked for surgeon - Donna told surgeon her experience, he held her hand as she spoke with tears in his eyes and said he was sorry this happened and we will get you help to get through this and do an investigation - but the nurse did not acknowledge or offer words of comfort or kindness


Donna went home that day and that night the nightmares started - the surgeon called the next day to check how Donna was doing - she spoke to him several times over the next few weeks - Regiona Health Authority (RHA) was notified and Donna was in therapy 2 weeks later and diagnosed with complex post traumatic stress 


3 weeks later Donna asked for an interview by RHA for an investigation and asked her to meet with them at the hospital where the trauma occurred - they did care how the location of the meeting would impact Donna - one of the worst things they could've done - Donna says they have changed this practice since


Donna does RHA interview and doesn't hear from them at all - Donna went back to work to use as a distraction and to feel 'normal' - 3 months later Donna is scheduled for a hysterectomy surgery - she struggles with PTSD and the need for more surgery - still no word from RHA, Donna contacts VP of medical services to talk - Donna had to reach out, when RHA should have been following up


Donna is given a contact at RHA for any of her questions - but Donna is just given the run around - Donna realizes that is futile and goes directly to VP with her questions - as time went on, Donna was able to get some information - many things wrong - Donna very mistrustful as her next surgery approaches at different hospital - but she needed the surgery - they gave her a spinal anesthesia instead - But Donna does wake up half way through surgery and turns to the anesthesiologist and says 'just checking to make sure you're here' - that surgery went well




Donna told by RHA she would get a report of her medical error - Brian did a lot of research about anesthesilogy and standard of care and found that anesthesiologists are never to leave the OR - "crictical incident" report to be sent to Manitoba health and Donna keeps asking for it and given the run around - finally after many, many months of trying to get a report she finds out that it was not recorded as a 'critical incident' because the patient had reported the error, therefore labeled a 'complaint' - only when staff report an error is a 'critical incident' report filed


No critical incident report filed because the patient made them aware of the error - the system is set up to help providers, not to protect the patient - Donna asked for internal report - and again given the run around - Donna meets with Theresa Oswald Provincial Minister of Health - Oswald says she will get the report for Donna - about 3 weeks later Donna get a copy


But the report is only 1.5 pages and has only 3 bullet points recommendations to improve safety - Donna cried because so disappointed - the report did not mention the effect on Donna, it did not admit a mistake was made, it was very vague - Donna asked again to meet with VP and with CEO of Hospital and confronts them with their own weak report and threw it on the desk and said 'you have to do better' - the report did not address what went wrong with Donna's surgery - they admit there were actually 3 more recommendations that they did not share with Donna 


Donna demands to see the full recommendations - they were 'a joke', ludicrous, ridiculous, a shame they didn't learn anything from their medical error - then Donna learns that another report had been sent to Manitoba health - Donna has tried for years to get that report but the goverment has legislation that protects medical providers and does not allow public access to reports - 11 years later Donna still doesn't know what went wrong during her surgery


Donna knew early on she had to share her story to bring awareness - "need to tell my story, need people to know what happened to me" - contact with CPSI (Canadian Patient Safety Institute) with their Patients for Patient Safety Canada group - other patients or surviving family members, common factor is all have been harmed by medical system, and all have desire to change the system - through this group Donna started advocating and tell her story publicly - as time went on, HRA became less interested in Donna sharing her story publicly




Donna made a video with PPSC for HRA to use to make the process works to support the patient harmed by medical error - Donna wanted to share beyond her region - contacted Head of anesthesiologist at university and Donna invited to speak to medical students about her experience - travels to share with different medical conferences, nursing students - healing and empowering to do advocacy - making meaning out of horrible event


Husband Brian a solid support over the years - Donna worked for 2 years but was not dealing with the trauma - did not want to go on medical leave for PTSD, but had no choice - still has flashbacks, nightmares, memory problems - still struggles every single day


"I was surviving, I wasn't living" - Donna tells Brian she doesn't want to live any more - asks Brian to hide her medication - Donna wants to escape the pain - the darkest day she had - but has struggled with suicidal thoughts - but children and grand children are reasons to live and first grand child helped with wanting to live


Donna advises other medical error victims is to talk about it - therapist warns that some family and friends and co-workers will get tired of hearing about it, but to keep sharing with others - best advice she's ever received - but also has received negative feedback and judgment from family, friends, co-workers who do not understand PTSD or mental health and have accussed Donna of faking it


Donna persists in sharing and raising awareness of medical physical and mental harm - the more we share, the more people can learn - let people know how devastating medical error can be - some days feels like beating her head against a wall with frustration with the uphill battle of advocacy


There are days when she feels like giving up with advocacy - cried many tears - maybe time to move onto something else - feels like a loss, betrayed, abandoned - "I will not be silenced" - Donna will continue to share her story and not hide from the culture of silence - not an easy road - continues to receive therapy because of medical error - Donna continues to pay the price for someone else's error - dealing with unwanted change is the hardest change




There are people who listen and want to change the system so it is safer for patients - there are good people, not all are narcissists - Donna focuses on those who can make change happen, listen to patients, and learn from horrific mistakes - system allowed bad behaviours against standard of care, and allowed it to continue and that is why Donna was harmed


Surgeon said 'I hate it when he leaves the OR, it puts more pressure on me to monitor the patient' - so the hospital knew this was happening and against standards of care and allowed it to continue to happen until Donna got hurt - they shouldn't wait until there is harm to make changes


Donna has had to have multiple surgeries since and it is very difficult to trust the system that hurt you, and the people in those same positions, although at different hospital - takes courage - finds vast majority of doctors and nurses are good people, but a few bad apples can ruin it 1:17:20

Donna wonders what would've happened if she had of died on the operating table, would any one have known what she went through and things would've continued - using her survival as meaning making because there are bad behaviours - 1:18:15Who are the real experts in medicine?' - it is not the doctors or nurses - patients are the experts in their own care - doctors need to get off their pedestals - Donna tells medical students: don't confuse your 1 hour of training in PTSD with my 11 years of living with it


It is a hard story to hear - Donna tells it like it is because people need to hear - we need to educate people on patient safety - the momentum of patient safety advocates is great to see

1:20:38 END 




Jeff Wood: The new Patient Zero: Hear how Jeff overcame years severely ill, bed bound, & medically abused to find his own diagnosis.

Jeff Wood: The new Patient Zero: Hear how Jeff overcame years severely ill, bed bound, & medically abused to find his own diagnosis.

May 29, 2019

Jeff Wood has one of the greatest Lazarus-like life stories you will ever hear. Jeff’s experience is made even more remarkable by a health care system that denied he was even ill. Jeff was so sick and disabled he spent years bed bound requiring care from his family, while physicians told him he was not really sick and that he had psychological problems.

But Jeff was very, very sick, and through his own tenacity and own research from his hospital bed, was able to determine the cause of his inability to be vertical, set up a meeting with a world renowned neurosurgeon, get a diagnosis over his phone, and a referral from that neurosurgeon to transfer Jeff to his hospital for surgery.

But the current hospital, deeply ego invested in their psychological diagnosis, refused to transfer Jeff for the surgery, while they continued to verbally and psychologically abuse and torment him.

I am amazed by Jeff’s journey to hell and back, but especially by his rational and grounded account of medical errors that can be traced back to when he was a toddler, and his determination to help other patients not have to endure the medical error and abuses he survived.




Jeff talks about how his story will blow people's mind - his tethered cord, leg and foot pain as a child, Jen Brea


Tethered cord and its relationship to craniocervical instability (CCI) and the 3 parts to our spinal cord, but Jeff's cord was still attached, but he had no idea except for leg and foot pain until he was 4 years old - diagnosed with 'anxiety'
Dr Petra Klinge - top tethered cord surgeon in the world - a lot of her patients also have CCI - 2 conditions often occur together
After Jeff's CCI surgery, he started to experience the same foot pain he had as a small child - 2nd surgery to free his cord - more symptoms went away
Jeff thinks if he had of been diagnosed properly as a 4 year old and had the tethered cord surgery, he would not have developed CCI as an adult and lost 4-5 years to severe illness
Two conditions related to tethered cord: Spina bifida and Ehler Danlos Syndrome (EDS)
Jeff studied cognitive science - standard childhood - he is interested in the human mind - mutliple realities - how do we open our minds?
Working toward his Doctorate - but started to get sick with 'mild' ME (Myalgic Encephalomyelitis) in Graduate School (end of 2011) - had bad flu but didn't get better - only half the energy he used to have - shocking, didn't know what to think - 'I'll just push through and it will go away' - it didn't, the more he pushed, the sicker he got
Can't socialize, can't go to the gym - had to go part time to school - then ended up bed ridden June 26 2014.
How being severely ill impacted his relationship - Jeff's parents came to help take care of him - put fridge in his room - couldn't prepare meals, needed help bathing
Many tests and specialists but none could figure out his problem - Jeff would try to generate hypothesis to explain his symptoms - but the doctors would say he was healthy, that maybe he had anxiety - imply he was depressed or malingering or take advantage of medicine or seeking attention
After bad crash in 2014 Jeff started looking into ME - started seeing Dr David Kaufman
Relieved to find illness, ME, that matches his symptoms - but no known cure, and is life long - a death sentence, overwhelmingly sad
Dr Kaufman history of HIV physician - works with discriminated populations - had moved onto the puzzle of ME - a very compassionate doctor who understands some patients are harmed by health care system - same office as Dr Bela Chheda
First visit with Dr Kaufman - he was very curious - wanted chronology of symptoms, Kaufman was very prepared, very good listener - Jeff had to lie down during appointment because he walked but too embarrassed to use his wheelchair - Kaufman did not blink - diagnosed with POTS (postural orthostatic tachycardia syndrome) - autonomic system dysfunction when going from laying to standing, heart rate, blood pressure affected - took lots of blood for testing
Jeff learns for first time he has abnormalities in his blood in spit of many tests over previous years - Epstein Barr virus (EBV) - IgM antibodies for acute infection - IgG antibodies indicate persistent infection - Jeff recently infected with EBV - but Kaufman sees it a lot in ME patients - but when Jeff gets to wear neck collar, his titres disappear
Jeff explains how brain stem compression can affect the immune system, autonomic system - turns out both systems work together - cause downstream effects including energy and Kreb Cycle - Dr Ron Davis had found abnormalities in energy metabolism in ME - if you have a structural problem in your brain stem it can impact auto, immune and metabolism, all found in ME - endocrine problems too? Jeff thinks there would be
Also found Jeff's natural killer function low late 2014 - unsure why - discovered very low vasopressin causing frequent urination - also a symptom of tethered cord because it is a neurological problem - neurogenic bladder - Jeff basically had no vasopressin hormone - associates tethered cord with frequent urination as his body tried to create a new balance - ME structural problem triggers cascade of symptoms
Started antivirals for EBV, 2 standard meds - also started 2 meds for POTS and some symptom relief but would then be too active and crash / get sicker - likens meds to a bandaid, but had to 'pace' - budgeting energy - if Jeff made breakfast and showered he'd be sick for days, but if only made breakfast, he could shower the next day
ME, Myalgic Encephalomyelitis - Jeff explains a 'crash' from exertion, like showering or making breakfast - equates showering to running a marathon without any training and carrying 40 pounds - the more severe ME, the less a person can do - Jeff couldn't even shower on his own, he had to have people to wheel chair him to the shower chair and directly back to bed and that would cause a crash
Periods when Jeff is so sick he cannot speak, then did not have energy to write simple notes - crashing can be caused by light and sound - Jeff experienced this, he could not tolerate light, it would crash him for days - dark room, ear plugs, only showered every 2 weeks because it would make him so much sicker - very low quality of life
Jeff became more severe in 2015 after starting to see Kaufman and had some improvement but Jeff pushed himself and crashed into severe - emaciated, extremely pale - Jeff's Mom said he looked like he was dying of cancer - only when he was very severe did Jeff look ill, contributing to dismissal by doctors
Jeff's partner and parents knew he was ill even though doctors said Jeff was fine - Jeff's partner saw his daily decline - fortunate to have support of partner and family - Jeff's mental health had to fight to want to keep going, to live, to figure out what was going on - even though he knew the odds of getting better was slim - but he was going to try to defy the odds and had to psych himself up - Jeff would say to himself when feeling overwhelmed and hopeless, he'd focus on good things like his cat and his partner - profound grief and sadness from his situation, but not depressed because he wanted to do things
With ME, Jeff wanted to do things, be social, but too ill
When very severe, Jeff realized that only improvement came by being completely still, no talking, no movement - after few days slight improvement - realized he needed to do extreme pacing to get small gains - now understands that was taking pressure of his brainstem by being supine - allowing body to heal
One day Jeff's neck started to hurt - had root canal and some teeth removed, noticed he had to chew differently - then 'boom' his neck was very painful and getting headaches - felt like his head was sinking down between his shoulders - breathing difficulty when upright - felt like 'the opposite of winning the lottery twice' - very sad situation with ME and completely new problem - went to emergencvy room (ER) several times and treated horribly
Jeff reluctant to go to ER - had horrible, traumatizing issues when going with ME symptoms - Mast cell issues - assumed Jeff had psych issues and labeled him with anxiety - ER physically ejected him by security - so when neck problems developed he had to try 3 different ERs in one night but none would help - Jeff asked for cervical collar and that was helpful
Collar is helping, breathe easier - will tide him over until he can get more help - but not getting any where in California in spite of research being showed to specialists - journal articles about CCI and how they can cause every symptom Jeff had - took them to Stanford hospital and University of California, San Francisco (UCSF) hospital but doctors offended Jeff would self-diagnose, and dismissed him and journal articles
Jeff gets MRIs but they are read as 'normal' but Jeff knows from his research that he needed specific type of MRI so specialist can interpret - pivotal moment when he got admitted when he switched to 'weaker' collar, but soon collapsed, but sill couldn't sit up - something had fundamentally changed - waited 24 hours still could not sit up - perhaps 'stronger' collar weakened Jeff's already weakened muscles - Catch 22 - but Jeff so severe, the collar allowed some function
Jeff thinks CCI symptoms is extension of ME - but once Jeff had CCI surgery, his ME symptoms lifted - tethered cord since birth, pulls on brain stem, related to EDS
How does viral infection fit into this puzzle? 2 ways: virus can degrade collagen / ligaments - if you already have EDS, even more vulnerable to viral degradation of collagen - 2nd way is already have structural problem impacting immune system, then a viral onset may cause CCI / ME.
Admitted to local hospital, they were hostile to him always, that didn't change - Kaufman and family advocated to get Jeff admitted - they did MRI but not the right one to detect CCI and no CCI experts in California - but Jeff knew he needed to get to a hospital with CCI neurosurgeons - but this hospital treated Jeff as malingerer - finally a neurosurgeon coerced to see Jeff, but surgeon lied about EDS and CCI knowledge - arrogance factor
"I was very traumatized" - Jeff knew the only way to get through was to fight - hospital cruel and hostile to him, causing trauma - systemic medical abuse - iatrogenic harm
3 weeks flat on back, head down, feet up in hospital - transferred to world renowned hospital that considered very, very good - abuse intensified at new hospital
Nurses generally very kind - doctors were abusive - they gave him cerebral spinal fluid (CSF) surgery in case he had a leak - when that didn't work, they became more hostile - told he needs to accept there is nothing wrong with him - wasting our time - abuse by residents, physical therapists in spite of Jeff vomiting - but 2 internists validated Jeff's symptoms but they were powerless - others would berate him - Jeff wanted to be transferred to east coast to see CCI doctors, but they refused - they tried to transfer Jeff to a nursing home
Jeff recounts laying in hospital bed having a consult with east coast surgeon via skype - Jeff gets diagnosed with CCI via video conference by looking at images - but hospital refused to transfer Jeff to east coast - so forced Jeff to endure abuse and torture and threat of financial ruin - these same neurosurgeons at same hospital also did same thing to a female with CCI - Jeff experienced new level of abuse, mistreatment - expresses empathy for others experiencing same
Jeff's family helps get insurance coverage, but it took months to change health insurer so he could to out of state for care - had to hire attorney to prevent hospital from shipping Jeff to nursing home - his lawyer tells him that he must have a family member with him at the hospital 24 hours a day so the hospital doesn't transfer him - fortunately no homes would accept him - treatment from hospital staff much worse when Jeff's family not in room
Contrasting health care experiences with something common and simple like broken arm to treatment when having complex illness
Hostile hospital runs more tests and do find CCI and put Jeff in the halo he'd been asking for since he was admitted - Jeff's explains screws put into his skull to hold head in place - used until he got surgery
First week of halo was difficult but Jeff adjusted - but gave him freedom from bed bound - he could stand up! "Felt like freedom" - Jeff's legs like toothpicks because of atrophy
Waiting for surgery with halo - then had surgery Jan 31 2018 - drilled holes into Jeff's skull and first and 2nd vertebrae and implanted plate to stabilize neck / head - 7.5 hours of surgery - had lots of pain meds coming out of surgery - but 'a hiccup' compared to years of severe ME - no more POTS, post exertional malaise - viral and urination normalized - light and sound sensitivity and brain fog disappeared - but hard to have hope but slowly accept that surgery helped ME
Jeff first person to link CCI and ME - wants to make others aware - Phoenix Rising forum to share info for ME patients
Dr Peter Rowe paper 3 people have ME but found to have CCI and surgery cured their ME - up to 10 people with CCI diagnosis, including Jen Brea - more people getting tested and treated - Unrest documentary about ME made by Jen Brea - both are sharing their CCI stories
Dr Chhedda works same office as Dr Kaufman - Jeff originally took CCI article to Kaufman - Jeff is 'patient zero' - Kaufman believed Jeff and wants to solve problem and help patient - Centre for Complex Diseases
Jeff decides to tell his story publicly - feels he 'had to' tell people - when patients come together we can pressure the system to act quickly
Jeff's website and twitter account - will build Facebook page - wanting to partner with MDs and organizations to incorporate CCI into diagnosing ME - want to shout from roof tops so this knowledge can be intergrated into ME care
As Jeff was repeatedly mistreated, he became angry and that is driving him toward patient advocacy - Jeff thinks he will be 100% recovered - amazed by his progress - had accepted he would never get better - hard to believe he's not living like that any more
Mast cell problems and POTS disappeared after surgery - can go to gym, go for a run, be around his cats
1:47:30 End

About the podcast

I’m Scott Simpson, a personal counsellor by day, a podcast host by night, and a sick and disabled patient advocate surviving medical error.

My hope is that by sharing stories of medical error, we can bring awareness to this 3rd leading cause of death, and implement solutions for patient safety.


But the podcast is not just about medical error experiences, I also interview people who are trying to make health care systems safer for all of us.

Turns out that a lot of people working on patient safety, have personal experiences with medical error.

The airline industry is quite transparent about their safety incidents. The exact opposite is true about the medical industry.

They work hard to ensure the public does not get easy access to data about medical errors.

Medical Error Interviews brings transparency to medical harm and death, giving voice to survivors and change makers.

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