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Colin James Haller at age 28, ran a successful business that he founded right out of college that would have paid his tuition to medical school. He met the love of his life a few years prior, and the two were planning a wedding as well as adjusting to new living arrangements. Before he could begin medical school, Colin was diagnosed with melanoma, a deadly form of skin cancer. Colin’s cancer went into remission and he was disease free for almost a year. When the melanoma returned, his doctor started him on one of the new immunotherapy drugs. He was informed that the disease would appear to get worse before it got better. Two months later, Colin was hospitalized for shortness of breath. A pulmonary embolism was suspected, but physicians ruled it out. He was moved out of ICU and onto the oncology floor. It was discovered in ICU that he had thrombocytopenia, and it was decided that he would need blood transfusions to correct it. This was Tuesday; he was scheduled for discharge on Thursday. On Wednesday, his attending doctor told him that his blood values were such that he could not continue to give him immunotherapy. Without it, he would die. However, Colin had just completed two weeks of radiation therapy, and a month prior to that 4 weeks of radiation therapy. The doctor suggested that he wait three more days and monitor the blood work to see if the values would improve. He agreed, but stated that he wanted every intervention needed within that three day window. On Wednesday, there was a written order for a thoracentesis to remove water around the lungs. The condition worsened throughout the evening. The doctor in charge of the oncology unit also received a consult from ICU that morning that stated Colin would undergo vital organ damage if he was not transferred there immediately. No one communicated any of this to the patient or the family. No one took any corrective measures to avert the dire outcome of the radiology and ICU warnings. This was a preventable error in communication that would have saved Colin’s life. He died in the early morning hours on Thursday, November 6, 2014.
My name is Maureen Robbins and I have a serious and disconcerting medical experience to share with you.
It is an unsettling story of the tragic and untimely loss of my 84-year-old father, Joseph Karbelk, who was denied his rights as a patient, inappropriately restrained and incorrectly treated with chemical sedation in an emergency room and then, because of these events, failed to recover. A mere six weeks passed from the date of the hospital incident to his preventable death, which was accelerated by the carelessness actions of hospital staff.
And that is the reason I am reaching out to you today: To advocate for more and improved hospital patient rights in addition to highlighting the need for thorough legal knowledge and action concerning power of attorney for Black Box drugs. Choosing appropriate POAs and family advocates — and ensuring that all family members have knowledge and access to current and relevant information – is imperative in a hospital setting.
What happened to my father — and our family — should never happen to anyone else. With that in mind, I am committed to disseminating knowledge about patient and family rights, what can transpire in a hospital emergency room and what should be done — actively and proactively — by patients, advocates, family members and doctors to ensure that this kind of emergency room misfeasance is eliminated.
My particular story focuses on the dangers of medical hubris and carelessness as it relates to chemical sedation, drug interactions, lack of communication and a careless disregard for patients’ rights and the enforcement of power of attorney.
In the autumn of 2017, my father resided with my mother in an independent living facility in Chantilly, Virginia. Although he had been diagnosed with vascular dementia, his dementia was controlled, and he was maintaining a consistent state of health. He was doing well — so well, in fact that he accompanied me in September of 2017 on a trip to Blacksburg, Va., to see my daughter at college.
One month later, on the evening of October 15, 2017 — after my father was prescribed a new medication (Seroquel), experienced a fall, then exhibited an altered mental status and behavioral changes — my sister took my father to the emergency center in Tysons Corner, Virginia.
At this emergency room, although lab work was performed, and a CT scan administered, it was determined that further tests were needed. Arrangements were made for hospitalization in Arlington, Virginia.
Before transport to the hospital, my father was given the drugs Ativan and Haldol, a drug that interacts negatively for dementia patients on Seroquel. He was also restrained against his will and without consent from the family. NEVER, throughout this ordeal, were my mother or I given the opportunity to approve or deny the treatment based on our respective powers of attorney. My sister, who does not possess power of attorney, was allowed to make decisions and support erroneous doctors’ assumptions without any attempt to contact the legal POA’s – even though my father’s power of attorney documents had been on record in the hospital system for over two years.
In addition to this lack of legal clarity and enforcement, another set of circumstances unfolded simultaneously concerning over-medication. This is where the deadly spiral of chemical sedation, and degeneration, begins. Although drugs are often needed for patients experiencing symptoms of dementia, as my father was, it is CRUCIAL for emergency room physicians and consulting doctors to inquire about, and then be more fully informed concerning the specific medications that patients are taking as they enter an emergency room and/or hospital. Otherwise, serious black-box drugs – antipsychotics known for their often-lethal consequences for interaction – can be administered without regard to other drugs in a patient’s system.
In my father’s case, he was given more doses of the very drug (Seroquel) that he was already having an adverse reaction to. This could have been prevented. All of his prescriptions were filled at the first facility –- and it is important to note that the first emergency room he was taken to was also at this same facility. Neither that hospital nor the second one he was transferred to provided a prescription list. It was this lack of background inquiry and non-communication concerning drugs and their administration and interactions that are to blame for his quick deterioration and ultimate death.
Upon arrival at the second emergency room, additional medication (more Seroquel) was continued although the ER physicians noted that my father was awake, alert and resting comfortably and calmly on a stretcher -– all indications that he needed nothing more except tests and observation. My father’s personal neurologist was never called. The ER psychiatrist on duty was called and was going to come see my father. That never happened. He consulted by phone with ER staff, recommended a chemical restraint cocktail PRN– that included even more Seroquel — and additional black box drugs throughout the evening. Within a short time, my father was mumbling incoherently and unable to follow commands.
Especially unsettling was the inaccurate assertion by the on-call ER psychiatrist. He stated to the ER staff that he was “familiar” with my father and his case. That statement was, and is, false. For the record, this doctor had no history with my father, never physically saw my father in the emergency department nor did he EVER access a list of my father’s current medications. He did not actually visit my father until the following evening when he requested that neurology be consulted.
On October 17, 2017, two days later, a neurology consult was held to discuss the state of my father’s worsening dementia; the attending physician noted that my father has been heavily sedated for days and had not regained his fully alert cognitive state. The doctor stated that my father was suffering from toxic encephalopathy probably related to the medications he had been receiving since hospitalizations — black-box medications, including ZyPREXA, Seroquel and Haldon — that were continued despite my father’s ongoing unresponsiveness.
Due to my father’s now-advanced dementia and accompanying poor prognosis for recovery, the family decided to stop both sedating and psychotropic medications and to adopt a palliative approach at home.
That evening at home, after my father was discharged from the hospital, he became exceedingly drowsy, feverish and gasped for air. An ambulance was called, and he was admitted to the emergency room in Fairfax, Virginia., for aspiration pneumonia, sepsis, and metabolic encephalopathy. Again, the on-call physician noted that my father’s symptoms were consistent with neuroleptic malignant syndrome (NMS), a life-threatening reaction to antipsychotic drugs characterized by fever, an altered mental state, muscle rigidity, and autonomic dysfunction –- due to the previous administration and dangerous interaction drugs.
Later that evening, my father was transferred to a hospital in Reston, Va., where his mental state fluctuated, and he stopped eating despite attempts at nutritional support.
On October 24, 2017, my father was transferred to the inpatient hospice facility. My father remained in hospice care for 15 days until he died on November 5, 2017.
It is clear my father was denied his rights at the hospital where he was discharged and, as a result, was negatively affected by inappropriate chemical sedation. My father represents the very patients most in need of a Bill of Rights. Patients who are unable to make decisions for themselves and rely, instead, on the legally responsible parties named as their decision-makers to ensure their safety and best interests are considered.
My father’s experience is far too common in emergency rooms across the country. His life was worth more than a series of careless missteps and avoidable mistakes. The use of antipsychotic drugs to control people without their knowledge or against their will violates international human rights. “Under international rights law, in the absence of free and informed consent, a nonemergency medical intervention that is not necessary to address a non-life-threatening condition is forced treatment”
Knowledge and pro-active communication are the tools that all of us, as family members and advocates, must gain and retain as we navigate the unforeseen dangers of America’s medical facilities. It is critical that we are all prepared to help safeguard our loved one’s care at hospital bedside, when they need us most.
The number of older Americans is expected to double by 2060. The number of Americans with Alzheimer’s disease, the most common form of dementia, is expected to increase from 5 million today to 15 million in 2050. The system of long-term care services and supports will have to meet the needs and respect the rights of this growing population in coming years.
Together we can create awareness regarding the use of antipsychotic Black Box drugs for our loved ones. My goal is to protect the American’s impacted by this disease who no longer can protect themselves.
Just and Restorative Cultures – Healing, not Harm.
Sam was my little sparkle. Life-affirming, cheeky, and bursting with life, he liked music, mud, pebbles and pine cones. He was funny and affectionate. He thought baby cows were ‘cute’ and enjoyed balancing ‘imaginary cow-pats’ on my head.
In the run up to Christmas 2010. Sam and I were heavy with cold. Britain was frozen. Sam’s energy rose and fell with his temperature on the peaks and troughs of Ibuprofen. He was excited by the falling snow, but even more so by Christmas. He thought the Christmas tree — still wrapped in netting on the floor — was ‘so beautiful’.
On the 21st of December we ventured out to see a GP, ice cold air making us cough and wretch to the point of feeling sick and sore. Had we got flu? “Maybe… but it’s just a virus” the doctor reassured us. So we went home to warm up and wait it out.
Sam and I spent the next day, the 22nd, curled up under a duvet on our sofa. Sam’s temperature had come down for the first time in a week but — unusually — he was not perking up with medication. Worried, Sue called the GPs’. We waited: first for a call-back, then an appointment. Late in the afternoon we bundled up and braved the cold again and Sam saw his second GP in two days. On the way home Sue was still anxious. The GP had seemed “in two minds”, she told me, before determining “the best place for Sam was home”. I watched Sam in the rear-view mirror. Small and exhausted. I knew how he felt. “We need to trust the doctors”, I said, “they are the experts”.
Soon after arriving home, Sam was sick. Sue sought more advice. Waiting for another call-back, I cuddled Sam beside his bed. He was sick again, but this time it was black. An out-of-hours service sent us to our local hospital. Yet more waiting. Then sudden urgency. An oxygen-mask. An ambulance. Blue lights. A&E. Drips. Blood tests. X-rays. Prescriptions written. Transfer to a High Dependency Unit. Reassurances. Shock. A circle of medics — white and blue, through dull green curtains. A kind nurse. A calm consultant. Talk of fighting as hard as any boy could. The beeping of Sam’s beating heart. And then a searing and suffocating silence. Circumstances beyond comprehension. 5AM. The 23rd. Weakened by flu. Overwhelmed by sepsis. A perfect life cut short. Aged just 3. Sam was dead.
In the UK the National Health Service (NHS) is everyone’s safety-net: safe hands if needed. So trusting ‘healthcare’ — despite anxiety for Sam — felt natural. Our trust was never blind, but always respectful, asking questions when necessary: believing the NHS existed for the health and wellbeing of patients.
But the speed and unexpectedness of Sam’s death changed everything. We no longer felt safe… and nothing made sense any more.
With broken-hearts, the need for safety and sense-making generated questions. Questions which — if safety was health-care’s priority — its practitioners would encourage and answer quickly and comprehensively.
Frightened, but in good faith, we waited. As weeks became months however, my ability to trust was systematically dismantled.
I started chasing responses. Unwilling to see through my eyes, they expected me to look through theirs. Assurances were free-flowing but — lacking evidence — meant nothing.
I was asked to be patient; to trust the professionals; trust the process; trust the system; to understand that no one goes to work to do a bad job.
Investigations were promised but dragged on interminably; excluding us; siloed; missing chunks of Sam’s journey; devoid of objectivity and, conveniently, dismissing our concerns. We were told that Sam died of something “incredibly rare” and “hard to spot or treat”; that “nothing could have been done to save him”; that his death was ‘explained’ and ‘unlucky’ but ‘unavoidable’.
But sepsis isn’t rare, and — with timely recognition — can be treated.
Independent investigations — spanning 5 bleak years — determined that Sam’s death was, in fact, avoidable. Amidst a ‘catalogue of errors’ the seriousness of Sam’s deteriorating clinical picture was repeatedly missed and misunderstood; prescribed antibiotics were not administered for hours… and so Sam died.
Lacking the courage and competence to join these dots together, the NHS’s cultural reflex was to protect itself, deflect scrutiny and bury the truth. Hierarchical power was misused. Minds closed to the possibility of improved safety. Perhaps they assumed I would give up or break down? Irrespective, it was a flagrant betrayal of the NHS’s constitutional claim to work ‘at the limits of science – bringing the highest level of human knowledge and skill to save lives and improve health’.
The ineptitude of healthcare’s co-ordinated response exposed cultures shaped by fear, blame and shame, but not compassion, trust or safety — for patients or staff. It was unjust: a festering indictment of defective leadership, governance and accountability.
Real safety depends upon timely feedback, learning how to identify and prevent avoidable harm, and sharing insight. But that requires psychological safety, which in turn depends upon trust. Both are characteristics of ‘just cultures’… but not of ‘cultures of fear’. And both are jeopardised by fear-fuelled and adversarial processes like complaints and litigation.
To be trustworthy (for patients and staff) health services need wiser leadership, better governance and radically different regulation.
Trust and safety are two sides of the same coin. Both have to be nurtured. If doubt undermines one, the other suffers too. Whether they flourish or wither is determined by actions and behaviours.
Pledges to ‘Do No Harm’ are not enough. And ‘Lessons Learnt’ mean nothing unless translated into safer care. If ‘Duties of Care’ mean anything, health services must go further, fast, stopping the cycle of avoidable-harm; banishing cultures of fear, blame, shame and scape-goating; punishing bullying and cover-ups. Safety depends on all of this… and more. Investigate for safety; encourage curiosity; welcome challenge; embrace different perspectives. Strive for learning and improvement. Reward transparency and innovation. Flatten hierarchies. Be fair and consistent. Offer kindness and respect to everyone.
Do all of this… and ‘just and restorative cultures’ will emerge and flourish. Cultural reflexes then will be to prioritise establishing who’s hurt, what they need, and who will help — ensuring that it happens.
Healing — instead of harm — depends on action. That’s what we expected for Sam. He deserved no less. Nor does anyone else. We have the know-how. We need the action. Lives — like Sam’s — depend upon it.
Due to lack of knowledge, communication, and negligence, my daughter was taken from me in an emergency June 3rd, 2018. Miscommunication between transfer hospital and new hospital caused the life if my beautiful 7oz baby girl. I was transferred to this hospital for observation for placenta previa. My bleeding was under control, until the resident doctor gave me pitocin and cytotec causing my cervix to dilate, placenta to explode, and the birth of my baby, who died during the process. There is much hope in my fight for truth. The state is investigating, and I have a great support system from my family. Misjudgment and negligence also led to end another woman’s pregnancy the same night as mine by the same facility. I found this woman by chance—although unfortunate, our combined events help build a stronger case against the hospital. Every day is a fight to the truth and every day I get closer to it. The closer I get to the truth, the more I will be willing to share as well. Due to being in the middle of the case, I am hesitant to share too much. I hope this helps. Thanks, Erin
May 1, 2012 was the start of a week which would forever change our lives. Gabby was a vivacious, funny, and smart five-year-old girl who loved cupcakes, animals, and spending time with her family. She had the sense of humor of an adult, and was the most kind, caring, and loving child. Gabby was so happy to love and to be loved. She adored her pet Chihuahua Bella, and enjoyed hanging out with her sisters, Nina who was seven at the time, and Sophia whom was thirteen at the time. Her smile was contagious and could light up a room. She had a full, promising future ahead of her until an untreated infection, which should have been caught and treated, led to sepsis and septic shock, and ultimately took her life on May 11, 2012.
Gabby died from sepsis/shock due to untreated Rocky Mountain Spotted Fever, which comes from a tick bite. We never knew of a bite, were asked about bites, or saw any marks. Several doctors considered it during her illness at the first hospital, which was negligent in her care, but not one of them ever presumptively treated with the correct antibiotic which would have treated the RMSF.
On May 1, 2012 Gabby awoke early in the morning with a fever of 102.5. We were concerned she may have an ear infection so she was taken to see her pediatrician. Her ears looked fine and the doctor thought she may have strep throat. She did a rapid swab on her and it was negative. The swab was also cultured in the lab a few days later and grew out negative. We took her home and assumed she just had a virus. Later that afternoon on May 1, she complained of a headache. Her fever continued through the day, and reached 102-104 throughout Wednesday May 3 and she was also having nausea, and eating and drinking less. On the late evening of Wednesday May 2, I put her to bed about 9:30 p.m., and went to check on her fever and give more medicine at roughly 11:00 p.m. Her fever when I took it was 105 degrees and she had broken out in a red spotted rash all over her body. The spots resembled the chicken pox, or what looked like raised mosquito bites to me. They were sparse, but did cover all parts of her body including her palms and soles. The rash seemed to lose its color and disappear when the fever would decrease a bit. We immediately visited our local ER upon the fever reaching 105 and the rash appearing.
The local ER gave more fever reducer and got her fever down, and the doctor who saw her came in very briefly, and looked down her throat noting it was red and swollen. He said she had tonsillitis and that the rash was from the fever. He administered a shot of injectable Rocephin into each one of her thighs, and prescribed her an oral antibiotic. She was discharged home during the early morning hours of May 3 at roughly 3:00 a.m. By 8:00 a.m. she was covered in even more rash all over her body. The rash now looked spotted, red, and flat, and I couldn’t get her to eat anything but small bites of ice cream, and had her taken small sips of water. She was now complaining of abdominal pain. She still had a high fever of now 103-104. I phoned her pediatrician and informed her of our local ER visit and her new symptoms and was told that she would see her in her office. Upon seeing Gabby she said we could stop the oral antibiotic because this was not tonsillitis, chicken pox, scarlet fever, or the measles, and that she thought it was an atypical Coxsackie virus (meaning she didn’t show the classic symptoms for it). Gabby never complained of a sore throat or had any classic Coxsackie blisters in her mouth/throat. The pediatrician stated that the fever could get up to 105, and that the fever reducer may not bring it down, but just to keep her comfortable. She stated that Gabby should be fever free by Saturday May, 5 or Sunday May, 6, and asked if I would call with a status update on Saturday May, 5. She never stated if she still had a fever Saturday that she wanted to definitely see her back or that it may be something more serious, just to check in.
I took her home and kept her on the couch to provide comfort measures. She was complaining that her legs now hurt, but I thought that may be due to the injections she received. The next day on Friday May 4, she spent the day on the couch and was tired, lethargic to me, and her fever remained high 103-104. She got up for a bit and moved around, and the rash still seemed to fade when the fever came down a bit, but the fever never went away. On Saturday May 5, she remained home in the morning with her older sister while my husband and I attended our seven-year-old daughter’s first communion. I briefly checked her over, and gave fever reducer before we left the house at 9:00 a.m., and returned home at 12:30 p.m. I didn’t get to check in with the pediatrician, as I knew their office had closed at noon, and my thinking at the time around 11:30 when I knew they would be closing soon, was that I felt she was no better, but not critically worse, and that given the pediatrician had told us she could be fever free by Saturday, maybe Sunday I considered she may tell us she would see us on Monday morning since we were still in the timeframe for which she believed she would have a fever.
Upon arriving home from the pediatrician we noted she was agitated, and noticed that she was off balance when she walked. I knew when I was ill that sometimes I would feel a bit dizzy and off balance. She rested on a cot while we did a quick celebration for our daughter, and was only taking sips of water at this point. I knew because she hadn’t been drinking much that she wasn’t going to be going to the bathroom much. No one had talked to us about lack of urination, or lack of balance, or that we should even watch for changes in her rash or what to look for as danger signs.
At 9:00 p.m. on Saturday May 5, I took her fever as it was time, and it was at 106. My husband rushed home from work and we phoned the patient advisory nurse telling her we were bringing her to the ER of the hospital in the next city over, which is a level 1 trauma hospital! We got admitted, were seen by the head of Pediatric Critical Care, who checked her over and looked down her throat. I stated the pediatrician thought Coxsackie virus, gave her history, and said she didn’t have any blisters in her mouth though? He said she actually had one petechiae on the roof of her mouth, and we asked about IV fluids because we were worried about dehydration. He stated that you only need one to two teaspoons of water every 20 minutes to stay hydrated and that we could have IV if we wanted though, that it would be quicker…we of course said yes, and he ordered blood work. Upon arriving at the ER she had fever, her BP had an ! next to it (on the low side), and she hadn’t urinated in 23 hours at this point! She also had a slightly elevated HR. He went off shift and passed us to another doctor. The next doctor didn’t come in for six hours, didn’t re-examine her, and said she just had to urinate and could go home. My husband took her to the restroom where she urinated very little, and it was amber in color. This was after a bag of fluids. We didn’t know this was a bad sign that it was still darker, and there was still little output.
We showed continued concern over her rash and fever….the doctor said “what do you want, it’s a virus, and it’s going to take time.” He stated that fevers could get all the way to 110! We knew that was ridiculous and didn’t listen to that, but then asked about her blood work. The doctor said it “was all good.” My husband asked a second and third time and asked about the urine. He said it was all fine! The nurse stated the doctor had a reputation for being very blasé, and went over fever and discharge info. Upon being discharged her fever was climbing at 103, and she was tired and appeared lethargic. She was carried in and out of ER…they never asked if she could walk.
Sunday May 6, she slept most of the day and her fever oddly came down to 99. My husband complained about the ER doctor and I said he had an awful bedside manner, but did say that her blood work was fine. We took that as the ultimate reassurance. She was very irritable and agitated. The next day, Monday May 7, I phoned the pediatrician at 12:30 p.m. to tell her she was no better. Three hours later the nurse called my husband back and said we could bring her in today or tomorrow and the doctor thought that her lack of balance was due to decreased eating and drinking. I said I had read more on Coxsackie virus and that I saw where bad cases could turn into encephalitis…she noted that she didn’t think it was encephalitis, but couldn’t be sure without seeing her, yet there seemed to be NO urgency on her part! My husband asked of his own will…what about her labs from the Saturday ER visit? Did you get a copy and see those? The nurse stated that the doctor was looking at them and then my husband heard the doctor say “oh my god, her labs were awful. Tell them to get to ER right away, or call 911.” We took her right to ER. The doctor who discharged on May 5 from ER didn’t look at the labs I believe or maybe just her WBC which was 4, and barely normal. I think he saw that and thought he didn’t need to look at the rest based on that! The ER doctor is claiming he switched two of her numbers around, and that’s how he didn’t note she was so sick….but what about the other 17 abnormal numbers, and the result at the top of the page of labs that said abnormal??? Gabby in her vitals and labs was showing SIRS and sepsis, and they sent her home. Without her labs, she was even showing the signs of SIRS/sepsis.
She was admitted Monday May, 7 a week after she got sick with fever, and was not given IV antibiotics for sepsis for 7 hours after admittance, even though her labs from two days prior were awful, and her labs taken after admitted were now even worse, and had decreased by half of Saturday’s numbers. Her BP dropped, she started something called “third spacing” they said, and she was moved to SICU and given an internal line. Her HR, RR, and BP were all out of whack and come to find out later the first hospital asked certain questions which we didn’t know at the time were related to tick bites, and they thought of tick borne illness in their differential, but not one of them treated her with the drug to treat it…Doxycycline. She had a spinal tap which looked ok, and a CT scan. We asked the night she was admitted if we should move her to Peoria..the children’s hospital. They stated they didn’t think they would do anything different at that time, but that she could get much sicker before better. They were not equipped, now we know, and should have known they weren’t equipped, and should have moved her.
The first hospital doctors never communicated the real seriousness of her condition to us, nor EVER mentioned sepsis to us. My husband overheard the doctor saying they thought Gabby was septic, and then he told me and then I asked the doctor. Even then there was NO urgency shown by the doctors or nurses. Tuesday May 8 shortly after midnight, in the morning hours of May 8, she became very unstable…even though she had been in what we now know was respiratory distress all day, and they wanted to intubate. We were kicked out, and it took them over an hour to intubate? We believe the doctor didn’t know what she was doing and may have over medicated her, as when we got back in she was puffy and swollen…something didn’t seem right? Gabby was then air flighted to another children’s hospital. They were wonderful, had a team of pediatric specialists, and asked the same questions, but knew their protocols and started her on Doxy for Rocky Mountain Spotted Fever, which they thought she could have. More importantly they had an ID doctor which the first hospital never bothered to consult with one despite knowing she had been wrongly discharged home from their ER, and had failing numbers when she finally got admitted back in. Gabby was put on ECMO, plasmapheresis, an oscillating ventilator, more antibiotics, and she was swollen and her lungs filled with fluid. They did an abdominal incision to release the abdominal fluid, and the kidneys started producing again. As a result of the untreated Rocky Mountain Spotted Fever, she then developed SIRS, sepsis and then shock. She also developed acquired Hemophagocytic lymphohistiocytosis (HLH) due to the sepsis, and ultimately she ended up with brain swelling which cut off flow to her brain….I was horrified when we were told she had no more brain function.
The first hospital sent her home with SIRS/sepsis in which she then lost almost two days of critical time in getting treatment and supportive measures. Her SIRS/sepsis was missed because the doctor didn’t properly look at labs and certain vital signs were ignored which I believe should have been red flags…red flags which I was not aware of at the time, but sadly now we know. Looking back we also now know that she had some blood blister type marks included in her rash when she visited the ER that night, but we didn’t notice them, but the doctor should have when examining her rash, and that is a life threatening sign now we know…why didn’t the doctor who was the head of Pediatric Critical Care note these?? We are still baffled at the incompetence that we now know what took place.
After Gabby died we learned that her pediatrician on day three of her illness, after we left her office, she dictated that she “didn’t think Gabby had Rocky Mountain Spotted Fever,” however she didn’t ask me about it, tell me about it, have her nurse phone me about it, nor did she get a history from me regarding tick exposure or possible exposure. She said it was impossible that she thought she had it, but admitted she didn’t know her facts in 2012 on it!?? She wasn’t treated for sepsis in a timely fashion once admitted at first hospital, and wasn’t intubated, nor had her airway protected like someone with sepsis should…her death was 100% preventable. The pediatrician also said she saw Gabby’s labs as of Monday morning, the day I finally called in at 12:30 p.m., but she felt “it was important to go on with her other patients and that she would come back to Gabby’s labs, and claimed she asked a nurse to call us in to be seen, but as of 12:30 p.m., NO ONE had phoned me! She never called the ER to say we were bringing her back, nor did she ever look in the computer, nor call to the hospital doctors to check on her status after Gabby was admitted! She only phoned Peoria after she saw that Gabby had been discharged/transferred from the first hospital, and was sent a summary and then went in to a panic about how she saw the doctor at the first hospital considered tick borne illness and that we needed to make sure we asked Peoria about Rocky Mountain Spotted Fever….they had already started her on it!
The negligence and mistakes started with the pediatrician on day three and continued to the ER doctor on Saturday, and the negligence now we know continued on until she was air lifted out! We shouldn’t be visiting a cemetery every day. Our surviving children have lost the parents they once knew, and have lost their innocence. The doctors and hospital (first one) have taken no accountability and no one wants to be honest we believe. Our child is gone forever…aren’t we owed some answers at least, some honesty!
In 2010, my mother was in a residential care home. She had moderate vascular dementia and, I now realize, a delirium. She was disabled because she had no hip joint and had become doubly incontinent. I had done my best at home, but it became clear that she needed more professional support than I was able to give. She arrived on the 13th of July. 2 medication cycles were correct but not the third. On the 13th of September, I had become concerned over her deteriorating condition. It transpired that 2 patient records had been mixed at the doctors’ surgery. 12 changes had been made, 9 taken off and 3 added. Steroids were missing and 2 eye drops for glaucoma added. No-one had noticed, not the doctors, not the pharmacists and not the care home. I raised the alarm because of her withdrawal and skin reaction around the eyes. We were lucky that the medications involved were not more serious. We were lucky that I visited every day. There are many concerns here, but what health professionals have to realize is that residents need protecting from the care staff. In this home they did not employ nurses. I moved her and she lived for another 3 years.
I never imagined I would work in healthcare. Like most people, my impression of hospitals was that they were calm and organised and had a characteristic smell of antiseptic. Then I was sucked into the vortex of hospital operations as I cared for my daughter as she suffered with brain cancer. I saw distraction, error, chaos. I saw well-meaning people unable to function as they wished. I saw and felt pain and suffering and after my daughter passed, I had to do something about it. The terrifying numbers of preventable deaths are concerning in the abstract, but when you see the suffering of innocents it becomes visceral, painful, and in my case an obsession.
I remember clearly the day that Jem showed her first symptom, she was 15 months old. I arrived home from work and there she was at the front door, waiting for me, as always. Her arms raised, saying ‘Dad, dad, dad’, waiting to be picked up and carried through the house as I found and greeted the rest of the family. It was a routine I cherished, that I began to look forward to on my commute home from work, only today something was wrong. Her broad and infectious smile did not have it’s usual symmetry and nether did her eyes; instantly I was worried. I picked her up and she snuggled to my hip and hugged me as I carried her to the kitchen. “How has Jem been today” I asked. “Ok, but she was nauseous at lunch time” her mother replied. “She hasn’t really kept anything down since breakfast”. It being dinner time I was concerned and took Jem to my study, where I looked up her symptoms on the internet. The loss of symmetry of facial expression pointed to only two causes: Bells Palsy which describes damage to the nerves supplying the face or a brain tumour affecting the cranial nerve supplying the nerves of the face, tongue and oesophagus. I gave her a snack and though hungry, she appeared to gag. I had an ominous feeling. The nausea was a worry. I got her a milkshake and a straw and tried her on that. To my immense relief she drank it down and her symptoms literally disappeared. We decided to put her to bed and take her to the hospital the following morning.
When we awoke, Jem’s symptoms had returned. We dropped her sister to school and headed straight to the hospital. The emergency department was a mad house. Tired, harassed-looking people in pale blue uniforms arrived at irregular intervals, asking the same questions as the last over and over. No-one seemed to know what to do, so we waited….and waited. After 7 hours or so a listless, sleepy paediatric registrar appeared. “Bells’ Palsy he said in a flat tone. “Take her home and if her symptoms don’t improve bring her back in six weeks”. I explained that, given her problem with swallowing, I was concerned the problem was a deeper one and asked for an MRI. He informed me that he would have to discuss my concerns with his colleagues and left. A nurse came in and applied some topical analgesics to her writs and feet.
Five hours later the registrar appeared again, looking even more tired than before and informed us that some blood tests were to be performed. A colleague accompanied him, with whom he conferred. “You have to learn to do it some time” she said cheerfully. The registrar looked apprehensively at my daughter and approached with syringe in hand. A nurse was called in and she pinned Jem down, pulled off one of the analgesic plasters off and the registrar began the first of his attempts to draw blood from my baby girl. She screamed as he jabbed her wrist and broke free from the nurse’s grip. The inexperience red registrar, sleepy as he was reacted altogether too slowly and the needle sheered through her delicate flesh leaving a livid red semi-circle. Jem was always one of those children who was brave and stoic, who recovered quickly and made a minimum of fuss. I picked her up, and she soon calmed down, despite the obvious pain and shock to which she had been subjected. The registrar asked his colleague to take over the task, but she demurred. This time an analgesic plaster was removed from her foot. “She is very strong” the nurse said “perhaps you could hold her”. I looked at Jem reassuringly and clamped down on her ankle as firmly and gently as I could. As the needle penetrated the sole of her foot she tried to break free, screaming in intense pain. “She is a really tough little kid” I told the registrar “this is really hurting her”. The registrar looked at me dubiously and said “Nonsense, see these pads, they make her numb. She can’t feel a thing.” And with that he started to pump the needle around inside her foot, looking for a vein. “Why is she screaming then?” I persisted. “She doesn’t like being held” he opined. I looked at her contorted face and never had I seen a look of such distress. She was screaming with such conviction that her tongue was rippling. But only on one side…..
“Listen” I said forcefully. “Stop doing that. I am telling you, you are hurting her”. He looked at my serious face and withdrew. “Did you notice her tongue?” I asked. “Tongue?” he said numbly. “Yes, tongue. It was rippling but only on one side.” He gave me a look of incomprehension and I explained about the cranial nerve grouping. The consultant was called, and I told him the same thing. “Take her home and come back in 6 weeks if the symptoms persist…” he began. “There is no way we are leaving here without an MRI” I responded, repeating the rationale. He looked at me sternly “The imaging lab is shut for the night, but I will try and book her in for tomorrow.”
I made a mental note of the brand of analgesic pads and we headed home. Once she was settled, I looked it up. The window of efficacy was 60-120 minute after application. “How can they not know such a basic protocol?” I wondered.
The next day was one of the worst of my life. The MRI showed a large mass (bigger than a golf ball) in the middle of her brain. We would have to travel for special treatment, we were told, and so our immersion into the confusion of hospitals really began. Her surgery was scheduled quickly, but the biopsy revealed a dire prognosis. Also, because of the location of the mass the surgeon had noted for an entry that required a cut through the head of the neck muscle. One of the cruelest cuts imaginable of the human body. Normal intra-cranial surgery is not very painful. I noticed her obvious pain, but it took days of arguing before the error was acknowledged.
There were many such incidents over the coming weeks. Far too many to mention, some to0 horrible to tell. Suffice it to say that despite the best efforts of well meaning staff, my daughter endured a great deal of unnecessary suffering. She suffered extreme pain, great fear and even torment in a life that was cut all too short. Why? Because there are deep systemic problems that make errors and omissions inevitable in hospitals. The fragmented information environment, a lack of effective team co-ordination, among many others. So we took her home and cared for her there. She died at 19 moths of age. The last words I spoke to her were ‘I love you Jem’ as she lay in her mother’s arms and gave up her last breath. I decided then that I would design a system to overcome these problems as a legacy to her.
Jem’s life was all too short, yet the most beautiful and valued experiences are often brief, consider:
a buttery glowing sunrise;
a boring red-orange sunset;
a peal of joyous laughter;
a flash of shooting starts;
a single fragile blossom;
a cloud of butterflies; or
an unexpected rainbow.
Such things light up our lives. They stand out like bright and shining jewels in our memories. No pure and beautiful experience is lessened by brevity, it is made more intense and more deeply treasured. We will forever treasure the time we had with her. We have vowed to use what we have learned through her suffering, to make her legacy. I am an inventor and now work in healthcare. The system my company has developed has been shown to triple nurse time spent on patient care, while helping ensure quality care is delivered and keeping the patient safe. That is her legacy.
After trying so hard to get pregnant with our first child we were surprised to find ourselves pregnant with our second child so soon. We joke that Grant Lars Visscher was in such a hurry to get here that he didn’t allow his body to fully develop and that is why he was born with a heart defect.
I was 18 weeks pregnant with Grant when we got the news during an ultra-sound that there was something wrong with his heart. From that day on we got to watch his heart grow on the hospital monitors during our almost weekly medical checks. After he was born on April 8, 2008 we learned that he had coarctation of the aorta and would require surgery.
Grant’s surgery was on Saturday, April 12 at 10:00 am and lasted until after 3:00pm. The surgery went well, they inserted a gortex valve to replace the coarctation and put the replacement valve correctly in front of his esophagus and trachea. The doctors said we could expect to be in the hospital for about 10 days.
Our little boy was recovering so well from his surgery that he was moved from the Pediatric Intensive Care Unit to the Cardiac Progressive Care Unit on Tuesday, April 15. However, the very next day he was having trouble with his pulse ox so a chest x-ray was ordered and they discovered his lower left lung had collapsed so he was put on a CPAT machine. He quickly recovered from that and the next day the CPAT was removed. At this time he struggled with feedings so the staff deemed it necessary on Thursday, April 17 to have him put on a feeding tube. However, they struggled with putting it in and ended up doing it under x-ray that day.
On Saturday, April 19 the nurse on duty that morning was not comfortable feeding Grant with a bulster feed in a TP feeding tube. She consulted with the doctor and was approved to change the style of feeding tube. She then proceeded to insert the tube into Grant’s nose. I told her that the staff had to do it under x-ray a few days earlier. She struggled a bit and then got it in. She then asked me if I wanted to learn how to verify feeding tube placement since Grant would probably be going home with it.
She then proceeded to show me how to insert a burst of air into the NG tube and listen for the sounds in his body through the stethoscope. At this time I ask her how you would know if the burst of air was in his stomach or not? I stated, “Wouldn’t there be a burst sound regardless of where it is in the body?” The nurse said that she supposed that would be true. She then told me that is why they take a sample of fluid out of the tube to verify that it is taking fluid out of the stomach. She then did that and showed me the fluid in the tube. I then asked her, “How did she know that was fluid from the stomach and not elsewhere in the body?” She then told me she had been doing this for years and just knew. I had no idea that the questions I was asking then would foreshadowed the events that followed.
The nurse then started Grant’s feeding of milk for the day. This was late morning. At that time I took Grant out of his bed and held him while seated. While holding him he became very fussy and his pulse ox started to fluctuate. The nurse checked things and said it could because of them weaning him down on his oxygen. A couple of hours later I paged the nurse because Grant was sounding raspy and was blowing whitish bubbles out of his mouth. A different nurse came in because our regular day nurse was at lunch. I explained what was happening to Grant and the nurse had me put him in the crib. She then began to suction out his mouth with a long tube. Grant seemed to do a little better after that.
That afternoon my husband Rich came and picked me up so that we could run some errands. While we were out my dad and step-mom went to visit Grant. We returned to the hospital around 6:30/7:00 p.m. and my step-mom handed Grant to Rich to hold. They then proceeded to tell us that Grant seemed to be distressed and that when they called the evening nurse in she told him that the sounds from his monitors were going off probably because he was moving down in his crib and needed to be moved back up. They said that they noticed that Grant seemed to do better when they held him upright.
It was around 8:00 p.m. when my parents left and Rich was holding Grant. At this time Grant started blowing whitish bubbles again and made gurgling sounds. We also noticed that Grant’s color was off. I told Rich that he didn’t look right and we paged the nurse. The evening nurse came in we told her that his color was off and that he was gurgling and blowing whitish bubbles. We also told her that when Grant did this earlier in the day that the mid-day nurse suctioned him out. She then got a big suction tube to suction out his nose, we told her that the earlier nurse used a smaller suction tube in his mouth, not his nose, she then got the other suction tube and started to suction him through his mouth.
At this point the evening nurse seemed a bit distracted to us. We felt like we were having to tell her what to do. After she suctioned Grants mouth she started his evening feed. I am not sure why she started his feed when we were concerned about his coloring and his blowing white bubbles. Just after she started his feed his color got worse. The nurse was doing something with the feeding tube or monitor when I told her that Grant was turning blue around his mouth. She then hit the call light and told the person that answered that we needed a nurse in here. The lady told her that she would send my nurse in. Our nurse told the lady that she was the nurse and needed a charge nurse in here right away. No one came in at that second so the nurse told me to go into the hall and holler for a charge nurse. I ran into the hall and hollered that we needed a charge nurse now that Grant was turning blue. A few nurses ran into the room then and within in seconds an over head page was made requesting code blue to room 902. Immediately thereafter about 20 people charged into the room to help revive Grant.
We had Mason with us so Rich took Mason out into the hall while I stayed in the room watching them work on Grant. One of the male doctors in the room started to ask me questions and I answered them. A nurse took Mason from Rich so that he could be in the room too. While Rich and I watched them work on Grant we heard the doctor that was putting a breathing tube into Grant’s mouth state that the NG tube had gone through Grant’s trachea. Sometime during this a nurse started describing what the team was doing to try to save Grant. Around 9:00pm a doctor turned to us to start to tell us that they have done all that they could for Grant. I cut her off and begged her to keep working on him and to not give up. She gave us sad eyes and said that they would try for 10 more minutes. The nurse that was describing things to us then asked us if we would like to hold Grant’s feet while they continued to work on him so we did, each of us taking one of Grant’s tiny feet into our hands. Shortly after that the doctor said that they had done all that they could for Grant. Rich and I both collapsed to the ground in sobs of despair. Grant had just died before our eyes. He was only 11 days old.
After we collected ourselves the staff let us be with Grant alone. Sometime after, while we were holding him together on the couch in the room, the doctor came in to tell us how sorry she was that they could not save him. I asked her how come this happened, that I didn’t understand since he was doing so well and was supposed to go home later that week. She told us that they think the NG tube had something to do with his death.
An autopsy proved the doctor correct. Grant died because a feeding tube was misplaced into his lung and the verification technique used incorrectly verified its placement. Soon after Grant’s death on April 19, 2008 the hospital changed their policy for feeding tube placement and verification. Once a feeding tube had been placed a pH strip is used to verify the fluid pulled from the tube to verify it is fluid from the stomach and not elsewhere in the body. If there is any struggle to place the feeding tube it is then inserted under x-ray.
Since Grant’s death in 2008 I have been on a quest to find a “Gold Standard” solution to prevent others from experiencing the loss that I have due to a misplaced feeding tube. Through this journey I have become a parent partner on the Patient Safety Committee at the hospital that he died at and have also become a member on the American Society of Parenteral and Enteral Nutrition (ASPEN) sub-committee NOVEL (seeking New Opportunities for Verification of Enteral tube Location). It is also through this journey and working with these groups that I have learned there is much more work needed to find the “Gold Standard” for feeding tube placement and verification.
Upon entering a large teaching hospital for surgery one hot summer morning, I expected to go home the next day, to rest and recover before going back to work the following week. Unfortunately, fate had a different plan for me. My surgeons unknowingly damaged my bowel and everything changed. I woke up in agony late that night when my small intestine burst open in two places. Everyone thought I would die, but somehow I survived multiple medical errors. I have no memory of pain, or the events of the next three weeks.
As daybreak arrived, I was still in acute pain, while residents were writing orders for me to eat breakfast and be discharged. While I was slowly dying, no one was coordinating my care or supervising the new doctors that morning. It took about forty hours before anyone realized how sick I was.
After I was finally rushed to emergency surgery, things got worse, when a student nurse anesthetist incorrectly placed a breathing tube down my throat causing me to aspirate. A gallon of barium dye infiltrated my lungs. In addition to the infection I had from my leaking bowel, I developed raging new infections, including sepsis.
After more surgeries and weeks in a coma, I finally regained consciousness. Still psychotic from the drugs, I vowed to write a book after I figured out what had happened. As a child, I was curious about everything, always asking questions. As a patient, nurse, and nursing professor who taught medical ethics, I knew my perspective would be unique. Because the hospital would not tell me anything, it took eight years to discover the truth and write my memoir.
After five surgeries and a month in the hospital, I finally went home with a large hole in my abdomen, hooked up to a draining machine for two more months. I had no idea how to put my life back together. Unable to move, bathe, dress, or prepare food, my initial recovery focused on regaining enough strength to walk and attend to my usual daily activities. Fourteen months later, I had to undergo a major repair surgery to put my abdomen back together.
During the years it took to write my book, I was amazed to learn how unsafe hospitals can be. Even though I had trained, worked, and taught students in hospitals, I had never realized all the dangers patients face. For example, I had no idea how many patients die from healthcare-associated infections (HAIs) each year in hospitals. In 2014, the HAI Prevalence Survey published findings showing there were approximately 722,000 HAIs in acute care hospitals in 2011 in the USA; and these infections caused the deaths of 75,000 patients during their hospitalizations. https://www.cdc.gov/hai/surveillance/index.html
I was shocked to learn that medical errors is not included on the annual list of major death causes compiled by the Centers for Disease Control and Prevention (CDC). Why? Because the CDC creates its annual list based on information from death certificates, which are filled out by physicians (and others), who use the International Classification of Disease (ICD) code for each cause of death – and there are no ICD codes for human and system factors. When hospital patients die from preventable errors and adverse events, their deaths are not linked to the real causes of their demise, such as misdiagnosis; unnecessary tests, treatments, and procedures; medication errors; immobility and preventable falls; infections from central lines, catheters, surgeries, and ventilators; skin breakdown (bed sores); blood clots; uncoordinated care; missed warning signs (vital signs and pain); poor or absent communication; pharmacy and lab mistakes.
In the hospital where I almost died, I suffered from: inadequate care from inexperienced doctors; lack of knowledge and uncoordinated care; deadly infections and unsafe practice; poor critical-thinking skills; poor or scant communication; and staff who saw me as an object instead of a suffering human being.
While heart disease and cancer are the two leading causes of death in this country, between 250,000 and 500,000 patients die every year from medical errors, making medical errors the third leading cause of death in the USA. Unfortunately, it is currently impossible to get a more accurate estimate, since many hospitals (and physicians) do not disclose errors. A problem not acknowledged is a problem that cannot be studied or resolved. Many patients get worse, or die, without knowing what went wrong.
As I struggled to rebuild my life, I yearned to know why I had almost died in a hospital. The more I learned, the stronger my moral courage grew within me. I was incredulous that the hospital had told me nothing, not one word – as though I did not exist, and had never been a patient there for a month. As I learned the pieces to my story, I wrote my book to help others understand how one failed moment in surgery, for example, can cause unquantifiable suffering and enduring hardship, for patients and their loved ones.
People who know my story often ask me what can be done to prevent medical errors. I say there is little one individual can do. Vulnerable patients cannot diagnose themselves, prescribe correct medications, observe their surgeries, coordinate their own care, or disclose errors when things go wrong. However, healthcare systems and insurance companies can evolve to value patient safety more than profit. Hospitals can operate with transparency so that errors can be identified, understood, and minimized. Everyone who uses health care can become their own change agents.
We need to understand more about medical errors and how so many people die from them. We need to ask lots of questions, especially when we (or people we love) enter a hospital. We need to know more about the informed consent we sign before surgery. We need to maintain current advance directives (living will and health care power of attorney). We need to get second opinions. We need to know which medications we are given. We need to have someone with us at all times (if possible) to be our advocate and witness.
Medical errors are ubiquitous. For the medical paradigm to change, those who work in health care – including hospital administrators, risk managers, attorneys, insurance companies, physicians, and nurses – must summon the integrity and courage to put patients first – before ego and money – and stop denying or covering up medical errors. We consumers of health care must become better critical thinkers and more proactive about our bodies. We must stop trusting blindly that everything is as it should be. We must not wait for corporate profiteers to change their goals. We need to become our own consumer advocates and protectors. Now.
As I struggled to rebuild my life, I yearned to know why I had almost died in a hospital. The more I learned, the stronger my moral courage grew within me. I was incredulous that the hospital had told me nothing, not one word – as though I did not exist, and had never been a patient there for a month. As I learned the pieces to my story, I wrote my book to help others understand how one failed moment in surgery, for example, can cause unquantifiable suffering and enduring hardship, for patients and their loved ones: ANATOMY OF MEDICAL ERRORS: THE PATIENT IN ROOM 2, by Donna Helen Crisp, JD, MSN, RN, PMHCNS-BC.
On July 10, 1996, we took our precious 11-year old son to the Children’s Hospital for what was to be a routine inguinal hernia surgery. Daniel was no stranger to Children’s, having undergone three open heart surgeries there over the course of his short life. Those surgeries went textbook; however, this one would prove to be our worst nightmare.
During surgery, the attending anesthesiologist made not one, but several mistakes, we would later find out. First of all, she set the anesthetic too high for too long (almost as if Daniel were having another open heart procedure). Then, while she placed a blood pressure cuff on Daniel’s arm, she never reset the blood pressure machine to read it. (As we understood it, normal surgery protocol calls for a blood pressure reading every 2-3 minutes; Daniel’s machine was never reset to give out those numbers.) And then, she left the room, leaving a nurse anesthetist student in charge.
Eleven minutes into the surgery, the surgeon noticed things didn’t look right. Upon questioning the student as to Daniel’s status, the student realized the blood pressure numbers had not changed during those 11 minutes, and he hit the “reset” button. Daniel’s blood pressure was 34/13. Immediately he coded, and even though the “crash team” got his heart going again, the damage to his brain due to a lack of oxygen was significant and global…and our precious, active, energetic little boy was given back to us severely brain damaged.
Today, as a grown man, Daniel has extremely limited vision, speech, and motor skills. He walks only with a great deal of assistance and cannot take care of his needs by himself at all. He requires 24-hour assistance.
Jessica was born with a cluster of heart defects called Tetralogy of Fallot with pulmonary atresia. This caused a condition known as Eisenmengers syndrome, which left her vulnerable to both uncontrolled bleeding and unpredictable blood clots. When she was born, the pediatrician didn’t detect her abnormality before we left the hospital. This is perplexing given the severity of her condition, but athey didn’t have newborn pulse-oximeter monitoring and she was not blue, as babies with heart defects often are. At her six-week checkup the nurse practitioner noticed something was wrong and scheduled an appointment with a pediatric cardiologist. Heart catheterization confirmed the heart defect.
She developed pulmonary hypertension early on, but had a fairly normal childhood with regular exams and two palliative surgeries. She was worked up for a possible heart transplant in 1993, then several years later was taken off the transplant list because her doctors were concerned about the mortality rate of the procedure. They said she had compensated for her defect with numerous collateral vessels. Throughout late childhood and early adulthood she was followed by the same pediatric cardiologist, who was an expert in her condition.
In February 2004, at age 23, Jessica was hospitalized with a urinary tract infection and pneumonia. She continued to have a severe cough and was unable to clear her lungs. Continuity of care was lost because she could not be admitted to the children’s hospital where her cardiologist was in practice.
By September 2004 she had been hospitalized four times in the adult hospital. She began coughing up blood, was hospitalized and released home. A few hours later she began coughing up blood again. She was Life-Flighted back to the hospital, released again, and was home until October 16th. This time she had a massive hemorrhage from an aneurysm in her lung. She was intubated by Life Flight. Because long-term oxygen therapy can create serious problems in patients with her condition, I asked them to extubate her once they got to the hospital.
The doctor at the adult hospital refused to extubate her and days later after many tries he was still unable to wean her off the ventilator. The pediatric cardiologist was out of town. Eight days after Jessica had been intubated, he returned and treated the aneurysm by occluding the blood vessel, but she was unable to come off the ventilator or breathe on her own. The doctors did not hold out hope for a positive outcome. We agreed to let her be extubated, and she then died.
The doctors at the adult hospital had a hands-off approach to Jessica and this caused a delay in care. If Jessica’s CT scans and numerous x-rays had been read by someone qualified in pediatric cardiology, they should have been able to diagnose the aneurysm in April, six months before her hemorrhage. A treatment plan might have given her a positive outcome. I guess I met with the doctors too soon after she died. I was grieving and emotional and did not get my questions answered in an effective manner. This still leaves me confused. I had no apology, not even from her cardiologist of 11 years who knew her risks well and did not act.
“An underlying medical condition” is no excuse for lethal medical errors.
Millie Niss was a much-published web artist and poet. She was my only child and a wonderful daughter. She was a talented patient advocate due to a lifetime of painful and debilitating illness, diagnosed as Behcet’s Disease in her early 30s.
Behcet’s is a rare, auto-immune, inflammatory disease which causes vasculitis anywhere in the body. It is often characterized by severe joint pain, skin lesions, and vision loss. It is rarely fatal, but involves frequent medical intervention.
I am a retired psychologist with decades of experience in advocacy. Yet our experience and our instinct that Millie’s care in a community hospital ICU was going desperately wrong could not save Millie.
Millie died November 29, 2009. She was 36 years old. She entered the ICU on November 1, 2009 with swine flu and was intubated. But she was not silenced. After she had recovered from the flu, but a week after becoming paralyzed from the chest down, Millie wrote:
I actually asked Dr. W, if I was still at risk of relapse, and she seemed quite confident, but I sensed something was stewing ‒ I think I got a secondary infection whose symptoms didn’t show until the first day upstairs [brief transfer out of ICU]. I became feverish and my throat felt suddenly worse when it had been OK earlier. Now I hope we can treat the infection successfully FIRST before trying to wean [off the ventilator] at all. (Nov 21st)
What did we know and when did we know it?
We did not know the hospital:
Millie had endured and been damaged by medical care previously ‒ often enough that she had requested an autopsy if she died.
The autopsy revealed her cause of death as osteomyelitis of the 8th thoracic vertebra with near total necrosis of the spinal cord, severe epidural inflammation and abscess: a missed diagnosis.
The New York Department of Health issued two citations related to Millie’s care.
-Martha Deed, Ph.D., Author, The Last Collaboration (Furtherfield, 2012). A multi-genre fatality review.
My husband, Roger, was admitted to a South Carolina hospital with pneumonia and an embolism. He began to improve and after a week in the hospital we were told he was ready for discharge.
Then the hospitalist shared with us that Roger had gotten too much blood thinner and said he was stopping his Lovenox shots immediately. But before he entered this important change into the medical record, a nurse came into the room with an injection. We told her the doctor had stopped injections and instead of checking with him, she proceeded to give another overdose, stating, “This will be the last one.” She was correct. It was the last one and it nearly cost my husband’s life.
Later that evening, Roger complained of side pain. The nurse did not come to the room but told her aide by phone that it was gas. When he complained later that the pain had gone to the other side, I heard her tell the aide on the phone to say the gas had moved to the other side. To make a diagnosis with second-hand information over the phone to an aide is not acceptable.
When we finally did see the nurse, we asked about pain medication. She said he could have either Tylenol or morphine. We both said out loud, “No morphine!” A few hours later she came into the room and gave him a shot. When I asked what it was she said, “Morphine,” and added, “That’s how we do things around here.” If the nurse had checked, she would have seen that Roger had severe bruising across his entire stomach and sides, a telltale sign of internal bleeding, especially with pain present. She did not check with or report his condition to the attending physician.
Roger was in a stupor for about 15 hours bleeding to death with no rescue in sight. The physical therapy team tried to get him on his feet the next afternoon and both times he collapsed backward onto the bed with eyes rolling. They also did not call the attending physician. As I watched his blood pressure plummet downward to a critically dangerous level, I finally screamed to get a doctor. The doctor came in and immediately rushed him to the critical care unit.
In critical care, they found every organ in his body had failed. The physicians were lined up outside his room with specialties in liver, kidney, heart, lung, etc. They worked extremely hard to save his life. While there he bloated up and had to have his wedding ring cut from his finger. He endured so much pain and suffering among other things with veins collapsing and had to have surgery to put an IV in his neck.
My question is: How does a patient go from pending discharge to every organ in his body shutting down? There is a clear explanation. Roger was the victim of one of the most common causes of death/near death experiences in hospitals across the nation, namely blood thinner overdose and “failure to rescue.” This could have been prevented if the people assigned to care for him had paid attention to their patient.
My husband left the hospital a broken man. He had been an active, robust man working 50-70 hours a week at a power plant and walking around the plant and staircases on a regular basis. When he entered critical care they could no longer hold his job for him. He was our breadwinner and it broke his heart and spirit that he could no longer provide for us.
Roger only lived another year. The assault on his body ultimately proved to be too much. The world has lost a fine man. We missed our 50th wedding anniversary last June and he will not be here for the birth of his grandson. Roger deserved better. He should still be with us.
I’m an artist, an advocate, a wife, a mother, a grandmother, and most recently a victim of dental malpractice. I was actively pursuing my passion as a Semi-professional “Singer/Song Writer/Radio Host/Animal Activist” until the reality of declining health forced me out of everything I loved and worked so hard to achieve.
I lost most of my teeth at the age of 16, due to having little to no medical or dental care. The easiest solution financially for my parent at the time was to have them pulled. Because of my age, my jaw was not yet fully developed and my maxillae (upper jaw) immediately began to resorb. Over the next 27 years, my maxillae resorbed so drastically that I became a dental cripple.
Unable to effectively and comfortably support a denture, my husband remortgaged his home and paid $68,000 for me to start the process of doing a dental restoration. That involved a sinus lift, a bone graft from my hip to my maxillae, and 11 implants finished with crowns and bridges. It all went well with the surgery and implants. There were no issues until I got the bridgework installed, that’s when my nightmare began.
After a 9 year struggle for answers from the consistent dental issues and continuing declining health, I learned my dentist made a serious error in measurement. I had a constant uncomfortable feeling. However, when I expressed the “vise grip” feeling and rocking issues I had been experiencing, it was always ignored. Later in 2014, I learned that the removable prosthetic should have seated right away after insertion without any discomfort, but that was never the case. I was also told by the lab owner that designed it that stability is vital to ensure the longevity of the implants and dental device. When the dentist first saw that I had to bite down hard several times to get the clasps to close, he should’ve immediately addressed the issue. Instead, he never directly addressed it as if to imply there isn’t a problem.
I went to my oral surgeon in 2015 to express my concerns. He verified that I should not be experiencing movement or discomfort. After checking my prosthetic, he validated there was definite movement and acknowledged that is not good for the implants over the long term. Furthermore, I learned from the Lab owner that the metals used in my restoration (bridges/crowns) were not Titanium as I was told (which I had paid for and seen advertised on their website), but rather a combination of dissimilar metals. This is a practice that is all too commonplace and potentially puts patients in harm. Because of the labs choice to use those metals, I am now suffering from extremely ill health from metal poisoning along with the daily struggles of malfunctioning and deteriorating dental work.
It has been validated by both my Allergist and several other prosthodontists that my suffering for the past 9 years was caused by the initial error in measurements in combination with the lab’s use of dissimilar metals. Serious allergies to the materials used in my restoration have developed from their mistake and continues to negatively impact my life. Some of my symptoms include constant mouth rashes, nightly tongue swelling outlining metal attachments, dry and burning mouth, and loss of sublingual glands (Saliva), along with numerous systemic issues.
Through this preventable tragedy, I have created an advocacy web site to help others become more proactive in their dental care. Understanding how metals interact in the oral cavity along with learning the right questions to ask is the best way to ensure the best outcome! I encourage readers of my story to take advantage of a page I designed specifically for dental patients on my advocacy site. It contains a wealth of important info that anyone can use to make a more informed decision and avoid the pitfalls of deceitful practices.
This is a picture of Richie’s last birthday. He told us it was his Golden Birthday because he turned 27 on the 27th (of January). He said his life would have good things ahead.
Richie was well educated, graduating from the University of Texas at Arlington with a degree in English and Journalism. He was funny, with a quick wit and always a smile. He was a loyal and loved friend to all who knew him. His passions were writing and music.
Richie also had an addiction to heroin which we learned of in 2005. He continued to work two jobs and maintained a loving and close relationship with our family. We had our boundaries and he respected them. We viewed Richie’s addiction as an illness, not a moral issue.
Monday July 19, 2010 I called Richie to meet for lunch. He said he wasn’t feeling well and was having a hard time breathing. I immediately went to see him. He was weak, pale, and cradling his left arm. His arm was swollen from his shoulder and chest to his hand. When I asked what happened, he said he had relapsed.
My decision to take him to Parkland Hospital in Dallas, Texas was my belief that they could take care of his drug issues and care for the possibility of an infection in his arm, along with generalized pain and discomfort. Richie was admitted to ED at 17:40 with a diagnosis of cellulitis left upper arm; history of IV drug abuse.
Throughout the night, I made several requests to his nurse for pain meds and meds for withdrawal. This is what he rec’d:
21:50 – morphine 4 mg IV
23:49 – morphine 4 mg IV
03:23 – Valium 5mg po
Richie never received relief from any of his symptoms. He was repeatedly short of breath and fainted at one point. I was at his bedside all night and his nurse never even observed his arm. Nurses showed little interest and never documented these events.
07:20 July 20th – Richie was finally given a bed on the surgical unit.
12:15 – Richie began to show a rapid decline. He fainted in the hallway and then returned to bed.
13:40 – Finally sleeping, Richie then vomited a large amount of coffee ground material. As I assisted Richie to the restroom to help him clean up, he had a seizure. After my call for help, it took three of us to get him back to bed. He was extremely short of breath, his body cold. He said he couldn’t breathe. I told the nurse he was septic and going into shock. Dynamap was unable to read a b/p or oxygen saturation. The charge nurse called Richie’s doctor who was in the OR. The doctor told the nurse to call the RAT Team (rapid response) or call the MD who was covering. She chose to call the covering MD. This is when the most precious moments were lost to save my son.
14:20 – MD came to bedside. As she left the room to write orders, Richie had another seizure with coffee grounds from his nose and mouth. Code Blue was called.
15:45 – Richie transferred unresponsive and on a vent to SICU. Accepting MD note: Pt coded on floor; probable aspiration thought to be related to narcotic withdrawal.
22:59 – Life support was removed and my son was gone.
I have been a registered nurse for 40 years. I have always loved my profession and the patients I cared for. I would treat my patients as I would want my own family treated.
As I left the hospital in the early morning hours of July 21, 2010, I swore I would do anything to be sure no one else ever suffered like this again.
On Sept 21, 2013 we and others were involved in a serious boating accident in which Jennifer sustained multiple internal life-threatening injuries, including several broken bones, head and neck trauma, and external lacerations. She was airlifted to a Level 1 Trauma Center and underwent multiple emergency surgeries.
She remained in a medically-induced coma and on life support systems for the next three weeks. In addition to her recovery from the injuries, Jennifer had to battle hospital-acquired conditions including VAP (Ventilator Associated Pneumonia), a UTI (Urinary Tract Infection), and BSI (Blood Stream Infection) before she regained consciousness and was able to breathe on her own through a trach airway.
After a total of four weeks stay in the Trauma Unit, she was discharged to an LTAC (Long Term Acute Care) facility. Soon thereafter, additional complications showed up including surgical site infection at the trach and a Peg Port infection in the abdomen. After three nights at the LTAC facility, Jennifer had to be admitted back into a Community Hospital for treatment of these newly acquired complications.
After two weeks at this hospital, her condition had significantly improved to where she had become mobile, was disconnected from most all tubes and lines, was able to go to the bathroom on her own, and was looking forward to eating soft foods again. At this time, she was breathing on her own, however, still with assistance through the trach port. Discharge planning had begun and we were told that by Wednesday morning she would be going home and would receive physical rehabilitation assistance. We really thought we had climbed a huge mountain and were now homeward bound.
A final requirement in support of the discharge and to starting on soft foods was that Jennifer needed to pass a barium swallow test.
Early Monday morning during this swallow test it was discovered that Jennifer had a TEF (tracheoesophageal fistula), which is a hole in the tissues between the trach and the esophagus. This a very serious complication and it requires a complex surgery to repair. This discovery triggered a series of intervening events, or at least we assumed so.
First and foremost, as a result of the barium migrating into her lungs, this brought about a high degree of respiratory distress. Over the next 36 hours, Jennifer was bounced and transferred back and forth between multiple units and caregivers. Her respiratory distress was also misdiagnosed as anxiety and thus multiple doses of Ativan were administered, further complicating the situation.
As the distress continued to progress, it ultimately landed Jennifer back in the ICU on Tuesday afternoon. There were no rooms available at this time, so they placed her in a recovery area, at which time the decision was also made to place her back on a ventilator.
Sadly, the caregivers at the time were unaware of the recently diagnosed TEF and they simply began ventilation through the existing trach. For the next 6 hours, they increased the cycle rate and O2 concentration levels until they were at 40 cycles per minute and 100% oxygen. No physical assessment was made, no blood gases were taken, and no ETCO2 monitoring occurred. All the while, the air being pumped into Jennifer was not going to her lungs, but instead escaping and collecting into her abdomen via the TEF.
At 12:04 AM, her body and organs had become completely oxygen deprived and Jennifer went into full cardiac arrest. A code blue was called and CPR was administered for 14 minutes, finally resulting in a restored heartbeat.
Needless to say, her brain had been so severely deprived of oxygen and glucose during this extended period of time that an unrecoverable amount of damage had occurred. The code blue team discovered Jennifer’s belly had been extended to 4X normal size, They did an emergency pressure relief through her abdomen and then re-intubated her, removing the trach and then using a longer ET tube where they isolated the TEF from the lungs.
For the next three weeks, Jennifer was kept alive on life support while remaining in a totally non-responsive state, during which time countless tests, scans, and neurological consults were conducted, all of which pointed to the same conclusion: massive and non-recoverable brain damage.
On November 19th, the decision was made to discontinue life support as there was no hope of reversing or recovering from the complexity and tragedy of these multiple medical communication hand-off errors and acquired complications. To this day, over two years later, not a single person at the hospital has ever said a word to me about the death of my beautiful wife.
Oddly, Blue Cross/Blue Shield (the member Health Plan) paid everyone involved in full, to the tune of $2.1M in submitted medical bills. BC/BS did not even know that Jennifer had passed away from these errors until I contacted them 1.5 years after the fact. And we all wonder why these types of patient safety tragedy stories continue to occur year, after year, after year. It’s really not hard to understand…to say that the system is broken is a gross understatement.
On Monday, January 19, 2004, my husband Jerry Carswell entered the emergency room and was quickly diagnosed with a kidney stone. He was given multiple injections of morphine and Dilaudid to relieve the intense pain. Later that day, he was admitted for observation and further tests. The physician began an aggressive regimen of additional narcotics and Toradol by IV to control the pain.
Jerry’s hospital stay was prolonged by an elevated creatinine level, which his physician thought was discontinued. Jerry continued to receive other pain medication. His pain was moderate and he was scheduled to go home Thursday if lab results tests showed that his creatinine levels were returning to normal. But Jerry never left the hospital.
I received a call around 6:00 Thursday morning: “Your husband had an emergency. Can you come to the hospital?” When I asked for details, the nurse simply asked how long it would take for me to get there.
When I arrived, a nurse guided me to an empty patient room. With her was a young woman I had not seen before. She looked at me and said, “Your husband is dead.” The nurse added, “He died peacefully in his sleep. You can take comfort in that.”
My shock was so complete that I could not process their words. I turned and ran to Jerry’s room – I tried to wake him – tried shaking him – and finally collapsed in screams and sobs. The nurse stood in the doorway: “Doesn’t he look like he is just sleeping? He looks so peaceful, doesn’t he?”
I got no answers to my questions. The young woman who had announced Jerry’s death was gone. I later learned that she was the new, inexperienced on-call physician for the urology group. The charge nurse would not supply any information or details. She just kept saying Jerry had died “peacefully.”
After Jerry’s funeral, I ordered his medical records and learned that he had been found lying “unresponsive” across the end of this bed by the phlebotomist who had come to draw blood at 5:15 a.m. The code team worked for 25 minutes and administered repeated doses of Narcan, a drug used to reverse drug overdose. These startling facts were in direct contrast to the “peaceful death” described to me by hospital employees.
We learned that at 3:30 a.m. Jerry had been give 75 mg of Demerol with 25 mg of Phenergan, injected intravenously all at once. No vital signs had been recorded in his chart before or after, and no one went back into his room to check his reaction after this concentrated dose of narcotics. The LVN who administered the drugs later stated she did not understand that Phenergan enhanced the effect of Demerol on the respiratory system. When she spoke with the on-call urologist at 3:30 a.m. she did not mention the pain medications Jerry already had in his system.
I asked for an autopsy by an independent pathologist or the county medical examiner. I was told that the on-call physician had requested a hospital autopsy that would be “the same” as one done by an independent pathologist. Too late I learned that, unlike a medical examiner or independent pathologist, a hospital pathologist does not investigate a possible drug overdose. The hospital pathologist did not determine a cause of death. In a sworn statement, he stated that as a hospital pathologist who had performed over 1000 autopsies, he had never done a drug panel to screen for possible medical errors. Three years later, we learned that Jerry’s heart had been retained by the hospital pathologist without my knowledge or consent. We are still attempting to gain possession so I can bury his heart and finally put my husband to rest.
Ten years ago, a young California political leader entered a Los Angeles hospital for gall bladder removal and bariatric surgery and died three days later with no cause given for his death. Lloyd Monserratt was a 36 year-old man who believed in community empowerment and social change. He was a Latino vote director for the Democratic Congressional Campaign Committee (DCCC), director of constituency services at NALEO, and a chief of staff for the City of Los Angeles.
During the three days that Lloyd was in the hospital, I was never told that his condition was deteriorating. In fact, the surgeon told me his operation was a success. This could not have been further from the truth. Hours before Lloyd died, I asked another physician if he was progressing normally and was told he was “exactly where he should be.” A later review of Lloyd’s medical records clearly showed that he was in organ failure. The reality was that Lloyd was on his deathbed and neither his physician nor anyone else in the hospital felt the need to tell us that there were complications from the surgery and he was facing death.
With no one willing to provide a cause for Lloyd’s death, I hired a pathologist to conduct a private autopsy. I also contacted the Los Angeles County coroner and asked that they confirm the results. The pathologist stated that the surgeon had perforated the bile duct during the gall bladder surgery. Left untreated, infection had set in and Lloyd had died of sepsis. The pathologist stated that the hospital had had until the night before he died to go in and save Lloyd. Test results showed Lloyd’s condition, yet his physician never wrote new orders as his condition deteriorated. The county coroner agreed with the findings and changed the death certificate to reflect that this was not a death by natural causes.
Sensing that there had to be something else, I continued to investigate. I learned that Lloyd’s physician had been arrested three times in a 10-year period while a licensed physician in California. One arrest was for felony possession of crack cocaine. The California medical board website did not show any disciplinary actions on his records and did not reveal any criminal issues. At the time, physician substance abuse problems were kept confidential and to a large part still are. The public has no right to know if their physician has a substance abuse problem that would directly affect their medical care.
Lloyd’s death caused me to seek change in physician accountability and transparency. In 2008, due in large part to Lloyd’s story, the California General Assembly passed SB 1441 (Ridley-Thomas), creating uniform and specific standards for dealing with substance-abusing licensees. The medical board website now shows information on impaired physicians that was once confidential. Amendments in other legislation have provided other safeguards. Much has changed since Lloyd’s death, but there is much to do.
There are no words to describe how one survives losing Lloyd Monserratt. His devotion to me, to our family, and to a community have been what has driven me to continue to testify before legislative hearings, challenge the California medical board to fulfil its mission to protect the public, and to make a legislative change that will still save lives. Lloyd was a problem-solver. He should have had the right to know his true condition while in the hospital and been given the option to find the care he needed to save his life. Lloyd was committed to changing people’s lives through the political system throughout the state of California. Yet, tragically, the state of California failed Lloyd.
Mark was 26 years old and living in Florida. He collapsed one day while out with friends and suffered a traumatic brain injury. He was taken to the hospital, where he was fully conscious until he was placed into a drug-induced coma.
On the second day in the hospital, Mark developed pneumonia, probably due to a mishap with his feeding tube. His parents were told that all was well and that it was a matter of time before he would awaken. On the fifth day, Mark’s mother was informed that he was in serious condition. The doctor questioned Mark’s parents about their son’s use of cocaine. Mark was not a cocaine user, and had not been in the past. That being established, the doctor mentioned that the culprit might be the propofol Mark had been given, and said he would recommend dialysis as a treatment for propofol poisoning. Another team of doctors came in, however, and decided Mark wasn’t ready for dialysis. This was a major error, according to later reviewers of Mark’s record. On the final day, a new doctor said he would move Mark to the cardiac unit and give him dialysis. Mark was prepared for dialysis but never received it. After this doctor left, Mark was not moved to the cardiac floor but to the basement, where he was placed in a barren room without even a char. The parents later learned from the medical records that vital medication had been considered and declined.
As Mark’s parents were visiting him in his new room, a nurse told them there was an emergency and asked them to leave the room. The next news they got was their son was dying and that treatment was futile. Mark’s parents were brought back into the room and he died in his mother’s arms.
The medical examiner ruled that Mark’s death was due to excessive bleeding caused by alcohol and drug abuse. Mark had no history of substance abuse; blood work done at the hospital had shown no drugs in his system and the equivalent of one light alcoholic drink. Later, Mark’s parents had his records reviewed by an independent physician who said that their son’s rapid decline was caused by a condition called propofol infusion syndrome. The reviewer also found many other system failures in Mark’s case. Because Florida law forbids lawsuits over the death of adult children, Mark’s parents were not able to get the answers they were seeking about his care. They wrote the hospital and received a written apology acknowledging poor communication, but the hospital refused to meet with them. They were, however, able to get a retraction of the coroner’s erroneous report that their son had died as a result of substance abuse.
Josie King was admitted to the hospital after suffering severe burns from climbing into a hot bath. She had healed, and was set to return home two weeks later. Josie died days before she was to be released. She had an undetected central line infection and severe dehydration.
After she left the PICU, Josie’s central line was removed. Every time she saw a drink, she screamed for it. She was sucking feverishly at her washcloth. Josie’s mother asked the nurses about this and was assured it was normal, although it was not something Josie had ever done.
Sorrel King had been with her 18-month-old daughter every minute from the day she entered the hospital. The nurses assured her Josie was doing well, and suggested it was time for Mrs. King to sleep at home.
Arriving back at the hospital at 5 a.m., Josie’s mother knew something was drastically wrong. The medical team was called. They administered Narcan, and Josie’s mom asked if she could give her daughter something to drink. Josie gulped down a litter of juice. Verbal orders were given: no more narcotics. Josie began to seem a little better.
At one o’clock, the nurse entered with a syringe of methadone. Sorrel told her there was an order for no narcotics. The nurse responded that the order had been changed, and gave Josie the injection. Soon after, Josie’s heart stopped. Her mother was ushered out of the room.
The next time Sorrel saw Josie, it was back on the PICU floor. Her child was hooked up to many monitors and looked awful. Eighteen-month-old Josie King died in her mother’s arms two days later. She had a hospital-acquired infection, was severely dehydrated, and had been given inappropriate narcotics.
Seth was a 23-year-old young man who had lived his entire life in the Riverdale section of New York. Seth was a good student who attended a school for the gifted in the city. At age 16, he developed Crohn’s Disease, and while his condition showed some improvement, it never left him and he was often totally incapacitated. This changed his plans, and he attended college close to home.
Seth then developed panic disorder. During the last year of his life, Seth was prescribed Xanax to control the panic attacks. This medicine was working. He maintained an A average until his death.
In August of 1993, Seth suffered a seizure. Although his physician father gave the emergency room doctor extensive information regarding his son’s medical history, including the medication he was taking, none of this was found written on his chart. Seth was experiencing classic withdrawal symptoms from Xanax. What was called his “bizarre” behavior led to his being put in restraints. Because no notes were written regarding his Xanax use, he was not treated for withdrawal but instead was consistently restrained and given medications.
His blood pressure became elevated, and by day seven was a dangerous 160/110. An EKG showed his heart rate at 116 beats per minute. Seth was transferred to the psychiatric ward of the hospital, miles away. Seth died alone, naked in a bathroom, of emboli caused by a week of thrashing to get out of restraints and being given a medicine that was causing him to become more and more agitated.
Nineteen-year-old Alex James, a Texas college student, collapsed while running on a university jogging path in the late August heat. He recovered and was taken by ambulance to the emergency room, where tests showed a low potassium level and an abnormal heart rhythm called a long QT interval.
Alex was seen by a cardiologist and by a consultant recommended a cardiac MRI. Alex thought one had been done since he was put through the procedure, but we later learned that the test had been aborted because the technicians at the hospital were not trained on new software. On the basis of this “inconclusive” MRI, Alex gave consent for a cardiac catheterization and an electrophysiology test, both invasive procedures. He spent four days in the hospital and a fifth day as an outpatient at a second hospital undergoing these procedures. He was never told that the cardiac MRI was not completed.
Alex’s heart catheterization and electrophysiology test showed no structural abnormalities. He did, however, meet the criteria for a diagnosis of long QT syndrome, a dangerous condition that can lead to sudden death. Inexplicably, this diagnosis was not made. One possible cause of long QT syndrome is low potassium, which can be brought on by strenuous exertion in a hot climate. The protocol in such cases is to replenish low potassium. Although we were told in the hospital that this would be done, it never was.
The doctor at the second hospital told Alex not to run and wrote this restriction in the medical record. However, the medical record also shows that Alex was given a second milligram of Versed, a drug known to cause loss of memory, just before being warned not to run. The total dose of Versed in Alex’s case was quite high for a 155-pound man. The only written instruction given to Alex when he was discharged a few hours later was not to drive for 24 hours. Alex was a good patient. He followed instructions and did not drive, but he apparently had no memory of the warning not to run.
Five days later Alex was seen by a family practice physician the cardiologists had recommended. This young doctor, still in her residency, lacked basic knowledge of cardiology. She did not know that Alex was supposed to be referred for genetic testing and gave him a clean bill of health.
Two and a half weeks later Alex was again running alone on the jogging trail. About a mile into his last run he collapsed and was found unresponsive by a passer-by. He died after three days in a coma. Pathology showed heart injury consistent with severe potassium depletion.
Our daughter Kate lost her life to an incurable cancer. Unfortunately, her journey was made even more challenging by life threatening hospital-acquired infection, misdiagnosis, and significant and permanent loss of lung function from septic shock.
We knew that we were facing a great battle with Kate’s malignancy but we never counted on the ravages of medical error, miscommunication, and medical care that was fragmented and chaotic. We promised Kate that we would finish the book we started together, so that others could learn from our experiences and hopefully avoid many of the adverse events we faced. The book took eight years to complete and it was the beginning of our patient safety efforts.
Smith, C., Buzalko, R., Anderson, N., Michalski, J., Warchol, J., Ducey, S., & Branecki, C. (2018). Evaluation of a Novel Handoff Communication Strategy for Patients Admitted from the Emergency Department. Western Journal of Emergency Medicine, 19(2), 372–379. https://doi.org/10.5811/westjem.2017.9.35121
Friesen, M., White, S., & Byers, J. (2008). Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Handoffs: Implications for Nurses, 1. https://www.ncbi.nlm.nih.gov/books/NBK2649/
Smith, C., Buzalko, R., Anderson, N., Michalski, J., Warchol, J., Ducey, S., & Branecki, C. (2018). Evaluation of a Novel Handoff Communication Strategy for Patients Admitted from the Emergency Department. Western Journal of Emergency Medicine, 19(2), 372–379. https://doi.org/10.5811/westjem.2017.9.35121
Friesen, M., White, S., & Byers, J. (2008). Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Handoffs: Implications for Nurses, 1. https://www.ncbi.nlm.nih.gov/books/NBK2649/
Clutter—Part, C. (2012). Joint Commission Center for Transforming Healthcare Releases Targeted Solutions Tool for Hand-Off Communications. Joint Commission Perspectives.