In recent years, there has been an increase in polypharmacy, reliance on medication as a treatment intervention, and the aging population, highlighting the need for systems of high reliability and standards for safety as it relates to medication prescribing and management. Our APSS Blueprints provide healthcare organizations with practical, evidence-based checklists and protocols to ensure medication safety across the continuum of care.
As told by Carol’s daughter, April Lindquist, on behalf of her father and siblings
Our mother, Carol, passed away on November 9, 2018, the day before her 77th birthday, from multi-organ failure, due to a very toxic antiarrhythmic drug that never should have been prescribed to her.
After her passing, my father and I requested her medical records from 2005-2018; which represented the 13 year timeframe her cardiologist kept her on the toxic drug. It was our goal to find out where the breakdown in her medical care occurred. Over the course of four months of reviewing 1,800 pages of documents from the same hospital and clinic system, it became evident to our family what happened. It is now our goal to inform others of her story.
In February 2005, Carol was diagnosed with new on-set paroxysmal atrial fibrillation. The first drug, Sotalol, did not agree with her, so the cardiologist team switched her to Pacerone; which is also referred to as Amiodarone or Cordardone. In 1985, the FDA approved the use of Pacerone (Amiodarone) for life-threatening, recurrent ventricular tachycardia and ventricular fibrillation, not for mild to moderate paroxysmal atrial fibrillation, due to the toxic, dangerous side effects of the drug. Before 2005, she had a known allergy to iodine, and this was listed in all of her medical records. Yet, her doctors ignored or never took notice that iodine is 37% the molecular weight of the drug, and Carol was allergic to it. In March 2015, and maybe her doctors were concerned about liability, removed iodine/iodides from her list of allergens. At this point, she had been taking Pacerone (Amiodarone) for 10 years.
Our mother had numerous side effects over the 13 years while on Pacerone, which added to her list of doctors, added to her list of diagnostic procedures, and added to her list of prescribed medications, while compounding her symptoms due to interactions. It is difficult to cover all of what she went through, yet it is important to know some of her experiences to understand the side effects of this dangerous drug, and what the doctors could have done differently to save her life.
In July 2010, a CT Urogram found increased liver attenuation at 95. The normal range is Hounsfield Unit 55-65. Here was an opportunity for the urologist to investigate what was causing damage to her liver. Instead, he neglected to share this discovery with the patient and other members of her treatment team. All follow-up office notes mention simple renal cysts, and the increase in liver attenuation was omitted.
In 2008, our mother’s hands began to mildly shake. By 2010, her head also developed a tremor. Her hands shook so severely in 2018, that we purchased adaptive utensils with a rubber grip so she could feed herself. In the pharmaceutical company Upsher-Smith Laboratories’ 26 pages of information on Pacerone, tremors are a side effect of the drug and referred to as Parkinsonian symptoms. In October 2018, her cardiologist referred her to a neurologist to test for Parkinson’s disease, and a brain MRI was completed. The doctor prescribed Primidone (Mysoline), a seizure medication, before he had the MRI results. No patient with kidney disease should be prescribed this drug, and Carol had Stage 3 Kidney Disease. The neurologist was negligent in not reviewing her past and current lab work which would have verified her kidney and liver damage. Four days before Carol passed away, and after days of IV fluid in the Intensive Care Unit, the toxicity of the medications began to lessen, and her hands were calm.
Her thyroid function (TSH) was tested from 2005-2011 by her primary physician, and after 2012, her cardiologist began testing it annually knowing that Pacerone could cause hypothyroidism. In May 2011, with this new diagnosis, her cardiologist did not stop Pacerone, nor was thyroid medication prescribed.
As Carol became older and her liver and kidneys had a harder time filtering the side effects of her medications, the doctors’ office notes became briefer and showed less involvement in her care. Her cardiologist and her primary physician were referred to as her Care Team; yet, both doctors created anxiety for the unhealthy, cardiac patient due to their inability to consult with one another about the best course for her care. Her primary physician noted Carol’s anxiety about her health, and anti-anxiety medication or sometimes pain medication was ordered to placate the patient.
The lab work reviewed in July 2017 stands out as the month when the dysfunction of her Care Team is most baffling. The cardiologist ordered lab work to check her kidney function, liver function, cholesterol levels and thyroid function. Cholesterol levels came back normal. Kidneys: Stage 3 Kidney Disease; Liver: Abnormal; and elevated thyroid. The next office visit on October 11, 2017, makes no reference to reviewing the labs ordered in July. Also, on July 20th, 10 days after her abnormal lab results, Carol sees her primary physician for a Medicare Wellness visit. There is no mention of the doctor reviewing past lab work to determine the need for new follow-up lab work.
In the summer of 2018, Carol had a cough that would not go away and she became progressively more unsteady on her feet. A chest x-ray discovered pleural effusion. At this point, the heart was stable; yet no further tests were done to determine why fluid continued to build up around the right lung.
On October 24, 2018, our mother saw her cardiologist for a follow-up office visit. She had lost 17 pounds in three weeks from lack of appetite and her gait had changed. On this date, our father asked the doctor to stop the Pacerone because of her hypothyroidism. The doctor agreed and then put her on the thyroid medication Levothyroxine. This was the first thyroid medication ever prescribed to her. The doctor should have admitted her into the hospital on this day with a blood pressure of 104/50, pulse of 52, and weight loss. Instead he sent her home. The following day our father took her to the Emergency Room where she was admitted into the hospital. ER ordered tests and discovered portal vein occlusion. The portal vein brings blood to the liver from the intestines, but it was blocked. In addition, her CT (non-contrast) test found non-alcoholic hepatic cirrhosis, due to the occlusion, plus moderate ascites from the fluid buildup in her abdomen, which explained her lack of appetite.
During her hospitalization, our father and her four children, made sure that one of us stayed with her round-the-clock. Our mother was confused and agitated on one of the evenings I slept overnight with her. She tried to pull herself over to one side of the bed to use the bedside commode. To my horror, the bed’s guard rail was down, and I reassured her that she had a urinary catheter. I pushed the call button for help, and no one came until I called out loud for help. The next day our nurse sister arrived from out-of-town and asked the ICU nurse what Carol’s ammonia level was since she had a hard time answering questions and sipping water from a cup? The nurse said it had not been tested. She had a severe urinary tract infection, and the ammonia test should have been normal protocol. With medication, the elevated ammonia level went down and our mother was able to have short, memorable conversations with us, along with eating food and drinking liquids.
Her liver continued to deteriorate, and then the kidneys and then her heart. Her last few days were spent in Comfort Care surrounded by her family.
Pacerone has a half-life after stopping the drug. It can stay active for up to 58 days in the body. If this drug is stopped and another anti-arrhythmia drug is prescribed, it is equivalent to taking two drugs, along with all its side effects. On the seventh day of our mother’s hospitalization, we requested from the cardiologist a Pacerone (Amiodarone) toxicity test. We wished we had requested this test on the day she entered the ER. Due to two weeks of IV fluids, the Amiodarone and Desethylamiodarone levels noted the drug still in her system, but at the lower range. The hospital sent her blood to a laboratory in Ohio. Carol was the first patient the ICU nurse ever remembered being checked for Pacerone (Amiodarone) toxicity. It was a test our mother’s oldest granddaughter discovered through the FDA website.
When our mother passed away on Friday, November 9, 2018, the funeral home had to follow up with the hospital on November 23 because they had not received the death certificate from them. The funeral home finally signed it on November 26. From our prospective, this delay from the hospital in filling out the death certificate was a red flag. Sure enough! What the hospital neglected to include on the death certificate were portal vein occlusion and liver failure.
We have learned as a family that requesting our medical records and reviewing them is crucial to getting answers to unanswered questions. Know the side effects of medications and its interactions with other medications to avoid undergoing unnecessary tests. Some doctors will prescribe additional tests and procedures that look good on paper, and that is all it is, it’s on their computer, it’s on our mother’s medical records… it’s called defensive medicine to protect against being sued. We feel defensive medicine was also evident in the cardiologist’s passiveness in allowing our mother to suffer through 13 years of taking Pacerone until our father requested it to be stopped.
Also, a family member or friend should accompany the patient to an office visit to take notes or ask questions. Our mother’s elevated ammonia level, from a urinary tract infection, is a good example of how it clouds a person’s ability to understand and retain information from their doctor.
In the State of Wisconsin, a spouse or child of a parent under the age of 18 can sue for medical malpractice caused within three years from the date of death. It means all our mother’s documentation from 2005 to 2015 would not be allowed in as evidence, only 2016 to 2018. The cards are stacked up against the patient’s family with a case that can last from 2-3 years.
Victoria Rose Herbertson
As told by Erin Herbertson
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
As told by Glenn's wife and daughter, Nancy and Melissa Clarkson
In March of 2012, Glenn Clarkson was helping with a controlled grass burn in rural Kansas. Something went terribly wrong and he became surrounded by flames, so he dropped into a shallow pool of water. His clothes did not catch fire, but he did suffer thermal burns. His wife, Nancy Clarkson, took him to the emergency room of the nearest hospital. He was diagnosed with second degree burns over 30% of his body, mostly on his back. The emergency room physician told Nancy there was no need to transfer Glenn to a burn center, so he was sent to the ICU for the night.
His family later learned that the hospital’s protocol called for him to be intubated to ensure an open airway, given Lactated Ringers intravenous fluid at a rate according to the Parkland Burn formula, and transferred to a certified burn center. But none of that happened that night. Instead, Glenn was given an inappropriate fluid—first at a rate too high, and then at a rate far too slow. When his blood pressure dropped, he was given a medication to raise his blood pressure by constricting his blood vessels. This decreased blood flow to his burned skin, and also likely caused the failure of his kidneys.
The nursing staff knew that Glenn should have been immediately transferred to a burn center, but were unable to convince the emergency room physician or physician on call to order the transfer. Glenn spent the night in the ICU and received several inappropriate and ineffective medications.
At the shift change the next morning, a physician assistant came to see Glenn. He immediately ordered intubation, proper fluid, and a transfer to the burn center. Once Glenn was at the burn center the staff were able to reverse some of the effects of the treatment in the rural hospital, but Glenn remained in critical condition. He underwent skin graft surgery on his entire back, but his body was too damaged to recover. He died 13 days after being burned.
Glenn’s story is not only about the errors made in his care, it is also about the secrecy surrounding the errors. The rural hospital refused to discuss Glenn’s treatment with his family. It took three-and-a-half years—and a lawsuit—to learn what happened. Nancy and Melissa (Glenn’s daughter) are now advocates for the disclosure of medical errors. You can learn more about their experiences and work at disclosemedicalerrors.wordpress.com.
As told by Irene's Daughter, Catherine Young
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.
As told by Meredith's Mother, Wendy Essenburg
Meredith was born full term on 9/16/09. She was a surprise since I was 43 (at time of conception) and all attempts to become pregnant had failed since our son was born 5 years previous (including 4 miscarriages). In April/May of 2009, we learned that Meredith had a heart defect that was common in babies with Down syndrome, and then that was confirmed via amniocentesis. I struggled so much with this diagnosis. Until she was born- then it no longer mattered. She was our precious girl!
Meredith had complications from the start, more so than is typical under these circumstances. She was in the NICU for 21 days where she was cared for beautifully. Most of the reason she was kept so long was because of feeding issues- she didn’t eat enough so was fed primarily through a feeding tube.
It was imperative that she eat to grow strong and big so that she could have her heart surgery. Finally they taught my husband and I how to feed her through a tube so that we could bring her home. Which we did on her 3 week birthday.
Two days later at her first Pediatrician appt, she was found to have a high fever. I was told with infants under 2 months, they have to go to the hospital with such a fever. We could not return to our original hospital because they don’t have isolation rooms in the NICU- we had to go to a different one within the same system. Once there, the pediatric cardiologist examined Meredith and put her on 2 heart medications to help her heart pump stronger. She would have needed heart medication at some point anyway before her surgery- this was just early.
The day after her readmission, I spent about 6 hours with Meredith. I fed her- she did great without the feeding tube! I was excited. We snuggled and napped together. I left around 4:30pm to have dinner with my husband and son, feeling hopeful- her fever was lower, she had color back in her skin and she ate pretty well.
Around 7pm, I received a call saying that my daughter was in critical condition and that we better get down there. They wouldn’t let us anywhere near her room at first, said they were working on her but their faces said it all. No one could tell us why her heart had slowed down/stopped. It was not expected even with her heart defect. We held her as she grew gradually colder. My heart broke into a million pieces. I loved her so very much.
The day after her death, we were called by a NICU doctor who said they were releasing her body to the county Medical Examiner, rather than the funeral home, because they suspected that she had been given too much of one of the heart medications and it had to be determined whether this caused her death.
It was confirmed 2 days following her death that she had been given 2-3x the amount of Digoxin she was intended to have. The attending doctor rewrote the cardiologists prescription, adding “/kg”, but not reducing the amount.
Further, all systems in place to catch these errors failed- in the pharmacy and nursing. My baby girl, our longed for and much prayed for second child, should be alive. My broken heart exploded again.
As told by Josh’s father, Ridley Barron
It only took a matter of moments for my world to fall part apart that Spring day. We were just a few minutes from our house as we returned from a family vacation when a driver raced through a stop sign and crashed into our vehicle. My wife of twelve years was killed instantly. EMTs informed me that day that I had watched as Sarah took her very last breath. At the same time, my seventeen-month-old son, Josh, had his seat belt snap and was ejected from our minivan as it tumbled down the highway after impact. Volunteers who arrived on the scene found Josh strapped in his car seat about 50 feet away from where our van had come to a stop.
Josh was taken to our local hospital in Southwest Georgia and moved from there, via a helicopter, to a larger hospital in Savannah, Georgia. For the next four days, our family would watch and pray for his continued recovery as we looked to move beyond the loss of his mother, Sarah. On day four his doctor informed me that Josh had a severe head injury but had continued to show steady improvement throughout his time in their care. He even hoped that Josh would improve enough to be a part of the upcoming trip to Middle Tennessee for the burial of his mother. His nine-year-old brother, Harrison, and his six-year-old sister, Abby, would pray each night that their little brother was safe and that he would soon be well enough to rejoin us.
So, it was with great shock that I received that phone call on the morning of day five. Doctors were asking that my family drop everything and get to the hospital as quickly as we possibly could. For us, that would be a 2-1/2-hour trip that would seem like forever. Upon arrival, we were greeted by doctors and administrators who asked us to meet with them in a conference room before they would allow us to go back to Josh’s room. It was in that conference room that the crumbling of my neat little world would reach its pinnacle. I was informed that a pharmacist’s error had resulted in a medication mistake. My son had received five times the amount of phenytoin needed for head seizures that he was having. Five times! I was lead into the room where I watched him die that day. I looked on as doctors made one last attempt to keep him alive but to no avail.
I decided two things that day. My son’s death would not be in vain; God would enable me to do something to bring good from the loss of my two family members. And I would do whatever I could with my story to help keep others from experiencing the needless pain I experienced that day. Mistakes happen. I get that. Health care workers are human. But mistakes don’t have to touch our loved ones. We must do everything we can to make sure that every preventable error becomes a distant memory. Every life matters; every half-second counts!
Donna Helen Crisp
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.
As told by Candace’s mother, Mathy Downing
Candace’s story is a horrific reminder of the damage medical error can cause.
At eleven years of age, Candace was prescribed an antidepressant, not for depression, but for test anxiety at school. After several months with no noticeable change, the dose was doubled. Candace eventually had a negative reaction to the medication, after being told that she could take an extra pill at night if she was nervous about school the following day.
The adverse reaction sent her to the hospital for monitoring, where instead, she was immediately administered not one, but two sedatives, which never should be given in combination with an antidepressant. Not only that, but the medication was doubled, given intravenously at twice the dosage one would give a 67-pound child.
The result was that Candace began having severe hallucinations, her heart rate doubled, her blood pressure skyrocketed, and she began running a fever. Then two days after being admitted to the PICU, she was given four times the amount of the antidepressant that sent her to the hospital in the first place, while I was informed that the blue pills she was given were Tylenol. Not only did I recognize the pills as antidepressants, our itemized bill validated what I witnessed. She was released two days later, still not eating or sleeping, with flu-like symptoms, and ebbing and flowing hallucinations.
Three days later, while in a drug-induced psychotic state, Candace hanged herself in her room, with no awareness of her actions. While I am glad she did not “suffer,” nothing can take away our needless emotional pain and suffering. Nothing can bring her back.
As told by Daniel's mother, Sue Stratman
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.
Stewart Dolin had the perfect life. He was married to his high school sweetheart for 36 years. He was the father of two grown, highly functioning, employed children with whom he had a very close and meaningful relationship. He was a senior partner of a large international law firm, managing hundreds of corporate lawyers. He reached that level because he enjoyed his work and derived satisfaction from cultivating relationships with his clients and helping them achieve the results they desired. He enjoyed travel, skiing, dining, joking around with his family and friends and an occasional great cigar. He was high on life! He and his wife had planned a trip to South America for the fall of 2010 and were taking their children to Costa Rica later that winter. He was 57 years old.
In the summer of that year, Stewart developed some anxiety regarding work. He was prescribed Paxil (paroxetine), a selective serotonin reuptake inhibitor (“SSRI”). Stewart’s prescription was filled with a generic version of Paxil manufactured by Mylan. Neither Paxil nor the generic version which Stewart was prescribed listed suicidal behavior as a potential side effect for men of Stewart’s age. Within days, Stewart’s anxiety got worse. He felt restless, had trouble sleeping, even asked his wife to listen to a meditation tape with him the night before he died (hardly typical behavior). He kept saying, “I still feel so anxious.” He developed extreme and dangerous thoughts. On July 15, 2010, just six days after beginning the medication, following a regular lunch with a business associate, Stewart left his office and walked to a nearby train platform of a train he never took. A registered nurse who was also on the platform later reported seeing Stewart pacing back and forth and looking very agitated. As a train approached, Stewart took his own life. This happy, funny, loving, wealthy, dedicated husband and father left no note and to this date no logical reason has been discovered that explains why someone who had previously enjoyed and appreciated his life as Stewart had would suddenly end it.
We did not know it then, but Stewart was suffering from akathisia. Akathisia is a disorder, induced by SSRI medications, which can cause a person to experience such intense inner restlessness that the sufferer is driven to violence and/or suicide. It has been said, “Death can be a welcome result.” For reasons related to the strong political and lobbying power of pharmaceutical companies, akathisia is rarely explained as a possible side effect of SSRIs and medical professionals and the general public know very little of the existence of this disorder. In fact, they want you to believe that akathisia is simply “restless leg syndrome.” As a result, sufferers of akathisia, as well as the medical professionals with whom they consult, are not able to recognize the symptoms of akathisia and therefore take the steps necessary to stop it. This lack of knowledge can and has tragically resulted in akathisia sufferers taking their own lives, leaving behind devastated loved ones. To date there are no organizations focused on akathisia awareness and therefore no website or materials regarding the disorder that can be accessed by sufferers or medical professionals.
MISSD (The Medication-Induced Suicide education foundation in memory of Stewart Dolin) is a unique non-profit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from symptoms of akathisia are accurately diagnosed so that needless deaths are prevented. A website, the creation of educational materials and support of educational conferences, will help to raise awareness and knowledge of akathisia. If this could happen to Stewart, no one is safe. MISSD will make a difference!
As told by Sabina's mother, Bodo Paradi
I would like to introduce my daughter Sabina Paradi.
She was a dietetic fellow at Columbia University, New York Hospital, in 2007 when she sustained traumatic brain injury after being struck by a truck in New York’s Lower West Side on the way from a play.
The system worked perfectly when she was assisted immediately by a passing nurse. In minutes she was dispatched via ambulance by a fine paramedical team and was brought for evaluation in the hospital.
This is where the system broke down. The immediate reaction by the team was to attempt to relieve acute elevated intracerebral pressure. The method chosen, hemicraniectomy, and the anesthetic (propofol) were both inappropriate to her care. Hemicraniectomy has been shown in a later study to be inappropriate in most cases. Propofol has been banned by the FDA in the treatment of pediatric traumatic brain injury patients because of various complications. My daughter was very slight of build, under 100 lbs, easily smaller than many pediatric cases. She was also athletic, which may have increased the tendency for higher intracerebral pressure. She had been ill for over a week, having contracted a resistant infection from one of her patients, and was taking antibiotics.
How would systems improvement have helped at this stage? Her condition should have been evaluated by a higher level of expertise, and used tools like teleconferencing and remote medicine to get the opinion of a nationwide team of experts. The hospital throughout her care lacked access to medical expertise other than what appeared to be a very overworked neurosurgeon. Traumatic brain injury cases in the first hours require extraordinary care in their evaluation.
What happened next? What happened next, I believe, is responsible for her death. She contracted a resistant pneumonia which was identified with her respirator. Complicating everything was that she was taking antibiotics, and therefore immunosuppressed; she had a head injury and was therefore immunosuppressed; she sustained extensive neurosurgery and was therefore immunosuppressed; and she was sedated and therefore immunosuppressed. The infections deepened her coma, along with the sedation.
Risking surgery and sedation in her case was very much contraindicated. There were and are many alternate protocols for handling cases like hers. Greater knowledge and the use of artificial intelligence might have led to an entirely different treatment regime. Other items needed were immediately accessible MRI, preferably state of the art; real-time polymerase chain reaction tests for the detection of microbial infections, in particular fungal infections which seem to plague the immunosuppressed; and a modern neurological intensive care facility. The facility at my daughter’s hospital had a ward shared among four neurologically impaired patients, all quite likely immunosuppressed.
In the end, what killed my daughter was a complete lack of knowledge of her condition which instrumentation and broader, specialized knowledge would have alleviated. Facilities like the US military traumatic brain injury facility at Ramstein, Germany, are more appropriate to the treatment of moderate to severe traumatic brain injury than hospital emergency rooms. It is my view that all such patients should be evacuated to very large specialty hospitals that treat only severe neurological conditions such as stroke, TBI, encephalitis, and the like. Air transport systems and stabilization protocols need to follow the military model.
As told by Dan's mother, Mary Weiss
Dan was the son of Mary Weiss. He was a gifted student and as a single mom, she was proud of his academic accomplishments. After graduating in 2000 with a degree in English, Dan moved to Los Angeles with hopes of becoming a screenwriter.
Mary visited her son in the summer of 2003. He had changed, and his mother was concerned. His behavior was bizarre, including claims of “communications” from “people who are not 100% human.”
Mary persuaded Dan to come home to the Midwest. His behavior became increasingly delusional. When he told his mother he would kill her if called upon to do so, she phoned the police.
Dan was taken to a local hospital. When no psychiatric beds were available, he was transferred to a larger teaching hospital. There he was put on the antipsychotic drug Risperdal and involuntarily committed for 14 days. His psychiatrist initially recommended that Dan be committed to a state mental institution. Later, he changed that recommendation to a proposal to enroll Dan in an industry-sponsored clinical trial for which the psychiatry department was aggressively recruiting enrollees.
Without Mary’s knowledge, Dan signed a consent form to participate in the study in return for not being committed to the state hospital. Suicidal patients were prohibited from enrollment in the study; since Dan had never threatened to harm himself, only others, he was a viable candidate for enrollment.
Dan’s mother was alarmed. She did not believe Dan was competent to give consent and saw his behavior deteriorating dangerously under the new regimen. Her persistent letters and phone calls begging for her son to be taken out of this program were disregarded. In her final communication, she left a voice message with the study coordinator asking, “Do we have to wait until he kills himself or someone else before anyone does anything?” Ten days later Dan stabbed himself to death with a box cutter, ripping open his abdomen and nearly decapitating himself.
Published results of the study showed five suicide attempts, one alleged homicide, and two completed suicides among the 400 trial subjects. An FDA investigation absolved the program of any wrongdoing and Mary Weiss’s subsequent lawsuit against the university was dismissed on a technicality. The university sued Mary for $57,000 in legal fees, but withdrew the demand when she signed an agreement not to appeal the dismissal.
As told by Millie's mother, Martha Deed
“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?
- From admission testing, we knew Millie was free of infection other than swine flu when admitted
- Developed MRSA and other infections in her central line, urinary catheter, and lungs
- Developed sepsis
- Required emergency surgical procedures at bedside
- Readmitted to ICU
- Received antibiotics intermittently despite her immune-suppressed status
- Required multiple transfusions due to medications given after we had refused them
- Waited nine days for a CT scan despite our protests
- Never had an MRI, though one was recommended
We did not know the hospital:
- Had more than a dozen active “Plans of Correction” on Millie’s date of admission.
- Had received 72 citations from New York Department of Health since 2005.
- Lacked patient complaint policies and procedures, as was discovered in a routine survey by the Medicare accrediting agency a year later, resulting in a Plan of Correction.
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.
As told by Roger's wife, Barbara Jukich
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.
As told by XingXun’s daughter, Yanling Yu.
On April 8, 2008, my dad was referred to a long-term acute care facility to be weaned off BiPAP. On admission, he was stable and had no emergency conditions. An allergy band was fastened to his wrist to warn about a life-threatening sulfa allergy that had been well documented in his medical records since 2004.
On the second day, the attending physician prescribed a sulfa medication called Diamox. Since my dad spoke little English, I held his medical power of attorney and had been his advocate for years. I asked the doctor twice about the risks of this drug specific to my dad. The doctor told me there were NO risks and he mentioned nothing about sulfa. When we expressed concerns about the drug causing metabolic acidosis, the doctor got irritated and said, “I have been a pulmonologist for over 25 years and have treated many COPD patients with Diamox. You people need to stand back and let me do my job.” We were intimidated by his abrupt mannerism. This was a deadly mistake.
Diamox caused a cascade of irreversible harm; first, ten episodes of diarrhea in two days, and then worsened breathing due to drug-induced acidosis. Shortly after the fourth dose, my dad complained of dizziness and headache as his blood pressure plummeted. To raise his life-threatening low blood pressure, the hospital pumped large amounts of IV fluids in a short amount of time. This severely compromised my dad’s heart condition. His whole body swelled up as a result of the induced edema, and his skin started to break down with large blisters and open bedsores. A few days later, my dad suffered acute respiratory failure, acute heart failure, and acute renal injury. We were devastated, helplessly watching my dad slipping away, and not knowing what had caused his sudden, rapid down spiral. My father passed away only two weeks after he was admitted. On admission, he had been recorded as being “alert,” “smiling,” “chatting with family,” and finishing 100% of hospital-provided meals.
Later, we found out that the hospital pharmacist had warned the doctor that my dad had a risk of anaphylaxis from this drug. Without any emergency, the doctor went ahead and ordered my dad to be monitored and to stop Diamox if anaphylaxis occurred. We learned that metabolic acidosis is a well-known side effect of Diamox and that Diamox can actually worsen carbon dioxide retention and respiratory failure in patients with chronic obstructive pulmonary disease (COPD). For these reasons the off-label use of this drug as a respiratory stimulant is no longer recommended for severe COPD patients like my dad. The treating physician, who had never passed the board examination in his field of pulmonology, claimed that there are no negative effects of Diamox on severe COPD patients and he denied that Diamox is a sulfonamide.
As told by Nora’s mother, Claire McCormack.
If I had not witnessed it with my own eyes, I would not have believed it. How could anyone have so much bad luck? How could bad luck be so devastating?
Nora’s bad luck began even before she was born. I was young and healthy with no pregnancy risk factors. My doctor ignored me when I complained of pain contractions and heavy bleeding for weeks. He told me it was not as bad I thought and, anyway, nothing could be done. My water broke at 23 weeks as a result of prolonged bleeding and contractions.
Nora was born on December 11, 2009 – four and a half months early. She weighed 1 pound 5 oz. She was immediately taken to the Neonatal Intensive Care Unit where she spent 129 days. We were so delighted when we finally took her home after four-and-a-half months. But two months after she came home, Nora vomited and turned blue. That’s when Nora was diagnosed with pulmonary hypertension (“PH”). PH is a disease characterized by abnormally high blood pressure in the arteries of the lungs that causes the right side of the heart to work harder than normal. Nora used supplemental oxygen and oral medications to treat her PH. She needed to be on oxygen 24/7 and take oral vasodilators to help reduce the pressure in her lungs.
The doctors assured us Nora would outgrow her PH and thrive. We were very dedicated to ensuring that she ate well and stayed healthy. We had a lot of fun with Nora for the next two years – taking her to the playground, the beach, and for rides on our bikes.
But suddenly, her PH worsened. She started fainting – a serious symptom of worsening PH. The only other treatment was a continuous IV infusion of a potent vasodilator called Remodulin. In order to receive it, Nora would need a central line in her chest that would be threaded to just outside her heart. She would be hooked up to a pump 24/7 that would pump Remodulin into her. They warned us there was a risk of life-threatening infection with a central line. They told us it was imperative that we strictly followed protocol in changing her dressing and in mixing her IV medication. We studied under a nurse and practiced many times before we went home. The home nurse was also assigned to follow us at home and guide us so that we could keep Nora safe from infection.
Shortly after getting the central line, Nora developed an allergy to something in the dressing or the cleaning products. The home nurse said that we should change the dressing change protocols so that she wouldn’t have an allergy any more. So we changed protocols and sure enough, her allergy started to go away.
Nora did extremely well on IV Remodulin. She no longer fainted. She was running around the backyard and climbing stairs. She had a great appetite, was sleeping well, and was generally happy. She celebrated her third birthday with a walk around the neighborhood to see all the awesome Christmas lights. We were so happy.
Then, within two months of changing the dressing protocol, Nora developed a central line infection. They removed the line and put a temporary one in her arm. After a few days, the nurses did a dressing change and sent us home. The next day, Nora had a central line infection. Her arm was terribly swollen. When they pulled out the line, her arm was filled with pus. So the doctor switched Nora to subcutaneous Remodulin delivery that did not require a central line.
But after that, Nora continued to faint or nearly faint, and she was not herself. One morning, Nora fainted and we went to the ER. We were there for nearly nine hours. During that time, Nora was not able to eat or drink and did not receive any IV fluids. As we pulled into the ICU after nine hours of waiting, Nora crashed. She was in acute heart failure and was dying. We were told that Nora had become severely dehydrated and that had caused her blood volume to shrink. With her already exhausted heart pushed to the limit, there wasn’t enough blood to pump to the lungs.
Yet, somehow, she survived. Nora spent the next 70 days in that room in the ICU recovering from nearly dying from dehydration.
Over time, it became clear that she should get a central line to deliver a heart failure drug. So we switched Nora back to IV Remodulin at the same time. Within hours after the switch, Nora started to improve. Clearly, the SubQ (subcutaneous administration) did not work.
We had received training on how to properly wash our hands and wear masks before accessing Nora’s central line or changing her dressing. When we were in the hospital, however, we often witnessed nurses not following proper hand washing. For example, a nurse washed her hands and put on gloves. Then she went over to Nora’s bed and used her gloved hands to lower the bed rail on Nora’s bed. Then she reached to open Nora’s line. The bed rail was not sterile, but the nurse did not start her hand washing over again. We saw nurses touch monitors and pumps after washing their hands. We saw nurses open Nora’s line while leaning over Nora’s tiny chest without wearing a mask. Every time we saw nurses break the protocol, we politely asked them to wash their hands again or to put on a mask. But we could not watch the nurses every second. The pressure was unbelievable – we knew it was life or death for Nora – but we couldn’t control everything.
About six weeks after Nora got a central line, Nora developed another central line infection in the Cardiovascular Intensive Care Unit (CVICU). Hospital personnel just told us that “it happens” and “nothing can be done.”
Nora had a hard time walking for any distance and could not dance or play. But she was finally stable enough to go home. The doctors suggested replacing the temporary line in her arm with a tunneled one in her chest before she went home. When Nora came back from having the line placed, the insertion site was purple and swollen. There was blood around it and the insertion itself seemed jagged. Within 32 hours, Nora had a raging infection at the insertion site. The site became extremely swollen and the skin started pulling back from central line. Nora had a hole in her chest and I could see up into her body. Nora had to have intravenous antibiotics and this delayed her discharge home. After that infection, she was even worse.
We were finally able to bring Nora home. We had a little over two months at home together. We took Nora for lots of bike rides. She sat in a little pool on the patio and played with toys. She loved baking and cooking and doing crafts. We read many books and watched lots of DVDs. Then on Halloween, Nora did not feel well enough to go trick-or-treating. She had been looking forward to it for weeks. Within a few days, she almost fainted upon waking. We took her to the hospital. Within 48 hours of arriving at the hospital, Nora got a fever. She quickly started to crash and by that night she was in septic shock. We learned that Nora had contracted croup in the hospital. There was not much we could do but wait and hope and pray.
Nora held on for nearly two weeks. Unfortunately, she was the victim of more preventable errors. A nurse gave her a double dose of a potent diuretic that sent her into acute dehydration and heart failure. Someone else mistakenly discontinued her IV nutrition for three days until I discovered it. Nora was fighting for her life without any nutrition at all.
But one day, Nora’s heart rate started going higher and it would not come down. Nora was uncomfortable and scared. She reached up and to me and said “hold me.” My husband was right there next to me. I held her tight and she said “please help me feel better.” Then I pulled her head down on to my shoulder. She seemed to lose consciousness and she slowly slipped away. We cradled her in our arms and looked at her beautiful face as she took her last breaths. Our beautiful, compassionate, smart, funny daughter who had everything going for her – except luck – was gone.
As told by Anna’s sister, Dr. Carol Gunn.
In 2012, Anna’s world turned upside down when she was diagnosed with bone marrow failure (myelodysplastic syndrome). This disease stemmed from her previous treatment for breast cancer; she was treated fifteen years earlier. At the time of her bone marrow failure diagnosis, everything else in her life seemed to be going well. She was a (single) mom to a high school aged son, whom she adored. She loved her job, they had just adopted Kai, a career change guide dog, and they were all living in a townhouse that she helped redesign.
After testing including a thorough cardiac evaluation showed she was fit to withstand the rigors of an operation, she had a bone marrow transplant in early 2013 at a well-respected teaching hospital. Anna did fine initially. Seven months after her transplant, she began to have odd neurologic symptoms and five months after that, chest pain. When she told me about her chest pain, I told her she had to go to the ER. Even though I am a doctor, she considered me just her kid sister. So, she elected to ask her teaching hospital physicians about her chest pain. First, her doctor recommended antacids. When her chest pain persisted, another said her nerve pain medicine was treating it – never fully evaluating its root cause. She was hospitalized two months later for her neurologic symptoms. Anna continued to have intermittent chest pain and was increasingly short of breath. The teaching hospital physicians “treated” her chest pain with narcotics. Seven days after admission, a cardiology consult was requested. Inexplicably, it took another five days for a cardiologist to evaluate her. By then, she needed a coronary stent and was finally begun on all the correct cardiac medications. But it was too late – the damage was already done. She had a fatal cardiac arrhythmia days later. Her autopsy revealed she had been having “ongoing waves” of heart attacks.
For several days after her passing, I was in shock. Then, my anger was off the charts. Convinced her death was likely preventable, I was driven to find the truth. After countless hours of reviewing all her medical records, I knew without a doubt: her death was preventable.
I returned to the teaching hospital that treated Anna, multiple times in fact, asking to hear about the changes being put in place to prevent more death like Anna’s. You see, many of her medical notes were “cut and pasted” and contained outdated information. One of her attending doctors confessed that although he had not evaluated Anna, he had written an admission note on Anna as if he had, because it was “late at night.” A second, when asked why he had not fully evaluated her chest pain, said “I would then have to refer out all my patients” [to cardiologists] for which I responded, “Sir, you could have been a hero”.
Clearly, as a physician, I have a huge advantage that most afflicted family members don’t: I understand medical records, how hospitals work, and the hierarchy in medicine. Even so, the road was difficult and at times overwhelming for me. But I was determined.
If it had not been for my dogged persistence, the providers at the teaching hospital would have chocked up her death to “long standing cardiac disease,” which she did not have. But I kept raising questions and it became evident I was not going to go away. She did not have “long standing cardiac disease.” She died a preventable death due to delays in diagnosis of chest pain.
So, I wonder, how many more Annas must die?
You know, for me, even over the loss of my precious sister, the ultimate medical mistake is the deafening silence that continues to surround medical errors.
Damon Daniel Weber, born 8/8/88 with congenital heart disease, had two successful surgical repairs by the age of four, and thrived into his teen years. A top student at one of the nation’s leading magnet schools, he was a theater director and actor who made his national television debut on the HBO series, Deadwood. He also skied, sailed, and rode wild horses with a world-champion bull rider.
After developing complications related to his original repair, Damon underwent a heart transplant in January of 2005, at age sixteen-and-a-half. The transplant was successful, and worked even better than expected. Damon returned home after 30 days with an excellent prognosis. There was jubilation in the family and among his friends.
But unbeknownst to Damon or his family—though his cardiologists knew—Damon’s heart donor had tested positive for Epstein-Barr virus (EBV), known as “the bugaboo of heart transplants.” But no treatment was given to Damon, appropriate preventive measures were not taken, nor were any warnings provided to Damon or his family. When Damon started reporting flu-like symptoms and other signs of EBV infection several weeks after returning home—cough, fatigue, fever, loss of weight, mental confusion—his cardiologists dismissed them, and said there was nothing to worry about. When the symptoms worsened and his family brought him in to the emergency room, the cardiologists still insisted on treating him for a full course of rejection, despite the fact that he tested negative for rejection and had every symptom of infection.
It was like stepping on the accelerator instead of the brake.
The treatment for rejection—suppressing the immune system to stop the patient from rejecting the heart—is the opposite of the treatment for infection. With infection, the treatment is to reduce the immune suppression so the patient can fend off the infection with natural defenses. Damon’s head cardiologist, the unit’s medical director, knew what the right treatment was: a year earlier she had co-authored a book chapter which stated that reduction or temporary cessation of the immunosuppression is the proper standard of care for a patient in Damon’s condition.
So not only did his cardiologists fail to help Damon, they actually hindered him from fighting back with his own strength by not following their own protocol. By the time his cardiologists had correctly identified EBV as the cause of his illness, it was too late. Damon’s unchecked infection had turned into a full-blown case of post-transplant lympho-proliferative disease (PTLD), and he died a terrible death, his organs ravaged from within.
Following his death, Damon’s family brought a lawsuit against the hospital and the cardiologists. After failing to produce his relevant medical records for three years, Damon’s chief cardiologist testified at her deposition that his records had been shipped to an off-site storage and “could not be located despite all best efforts.”
In 2012, Damon’s father, Doron Weber, published a critically acclaimed memoir about his son’s life, Immortal Bird: A Family Memoir (Simon & Schuster) but to date the lawsuit remains unresolved and Damon remains gone.
As told by Jerry’s wife, Linda Carswell.
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.
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.
As told by Josie's mother, Sorrel King
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.
Dan Ford developed a deep passion for patient safety as a result of medical errors experienced in Illinois by his first wife, Diane, and the inhumane treatment experienced when he asked Diane’s providers logical questions about what happened. The mother of three children (11, 14, and 17 at the time), Diane was pursuing her second master’s degree when she entered the hospital for a hysterectomy. During surgery, her colon was cut, leading to a colostomy. Twelve hours later, she overdosed on morphine given to her through a PCA pump. The code team was called, and took over 21 minutes to intubate her. Narcan was not available. This time frame caused a respiratory arrest and permanent brain damage/short-term memory loss. This was followed by three other hospitalizations and two major surgeries…residuals of her initial hospitalization/surgeries. Diane now resides in an independent living facility.
Desiring to convert his anger, hurt, and frustration into constructive activities, and using his visibility as a health care executive search consultant, Dan accepted invitations to become involved with the American Society for Healthcare Risk Management in 2002 and the National Patient Safety Foundation in 2004. He has since given over 70 patient safety presentations, including at the Annual Leaders Forum of World Health Professions Alliance in Geneva, Switzerland in 2006, and to boards of directors, executive management and physician leaders of hospitals, systems, and other provider and insurance companies. His experience on patient safety and quality boards of directors and committees includes the MHA Keystone Center for Patient Safety, TJC, NQF, ISMP, TMIT, AzHHA, IHI, CHP, Carondelet Health Network, and GE.
Dan focuses on patient expectations, roles that patients and families can play, and expectations of leadership. Consistent with his values, he feels the industry needs to focus on:
- Leaders that are role models for patient safety and high quality;
- Partnering by providers/clinicians with patients and families, including inviting patients and family members to participate in their own root cause analyses;
- Patient and family-centered care;
- Portals for direct patient entry into the electronic medical record;
- A genuine patient and family-centered focus by insurance companies and the legal profession;
- Human civility, respect, and transparency.
Dan recently retired from a fulfilling 36-year career as a health care executive search consultant. He continues his patient safety passion and journey, including presentations, boards/committees, writing, workshops, and networking with other patient safety advocates and provider colleagues. He is enjoying more time with his three children and five grandchildren. He has an MBA from the University of Chicago and is a lifetime fellow of the American College of Healthcare Executives.
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.
Nile Moss took his first breath of air in a California hospital on August 23, 1990. His parents welcomed Nile with hope and great joy.
Fifteen years later, Nile Moss struggled for his last breath of air in a California hospital, the victim of a hospital-acquired infection. A deadly form of bacteria called MRSA had invaded Nile’s bloodstream and led to deadly pneumonia. Nobody knew that at the time.
Nile said good-bye just before midnight on Easter Sunday. He lost consciousness and died the next morning. His parents were stunned and confused. What went wrong? What could have been done to save Nile’s life? Their confusion turned into a quest for answers.
Tragically, the information provided did not quiet the concern for the parents, or lessen their pain. Nile’s death should not have occurred. Like 100,000 other patients who died that year from hospital-acquired infections, Nile’s death could have—and should have—been prevented.
Nile was born with a treatable condition called hydrocephalus. That condition required two brain surgeries and annual MRIs to monitor his condition. Each visit produced a report of good health. At no time did Nile’s parents fear harm would come to him through routine hospital screens. They were never informed about the dangerous bacteria that accumulate on surfaces in our nation’s best hospitals, and are inherent in many medical facilities.
Seventy-two hours before Nile died, he developed symptoms that looked like the flu—a fever, deep cough, dark mucus, headache, shortness of breath, and fatigue. Pediatric doctors tested Nile for strep bacteria. The test came back negative, but no other tests were performed. He went home with antibiotics that were appropriate for strep and ineffective for MRSA. Nile’s fever peaked at 104.5 and his breathing was labored. Nile was taken back to the doctor early Easter morning. An x-ray confirmed pneumonia. Nile was in a medical emergency, but the truth of his condition had not yet been diagnosed. A rapid two-hour test for MRSA existed at the time, but was not the standard practice.
Five hours passed before Nile was admitted to the hospital, as his fever continued to rise, and his breathing worsened. Five additional hours passed before he received his first antibiotics. His heart began to fail. His parents saw urgency in the faces of the doctors. Nile was dying and the doctors knew it. He was pronounced dead at 5:30 the next morning.
The official cause of death was recorded as sepsis, but later identified as MRSA bacteria that Nile had acquired from simply lying down on a contaminated MRI bed. CDC estimates more than two million people per year will contract one of a growing number of deadly infections while visiting the hospital. Many will pay the ultimate cost for the lack of urgency that has allowed this epidemic to go untreated for decades.
Upon learning these statistics, Nile’s Project was launched to help bring awareness to other families. In 2008, California passed SB1058, called Nile’s Law, requiring hospitals to screen, measure, and report hospital infections.
Please see http://www.nilesproject.com/ to learn more about Nile’s Project, Nile’s Law, and the dangers of MRSA.
As told by Justin’s mother, Dale Ann Micalizzi.
On January 15, 2001, Justin Micalizzi, a healthy 11-year old boy, was taken into surgery to incise and drain a swollen ankle. He was dead by 7:55 the next morning, leaving behind two grieving and bewildered parents who desperately wanted to know why their son had died. But medical care was to fail them twice – first their son died and then no one would explain to them why.1
Justin’s mother, Dale Ann Micalizzi, has spent years searching for answers as to why her son died from what she had been told would be a 10-minute procedure. No one involved with the case would talk to the family, and Justin’s original medical records were incomplete and inaccurate. Depositions revealed some information that the family had not known, but the case was ultimately dropped for lack of evidence. Dale went on to become an international figure as a patient safety advocate, but despite her many contributions to the field she was never able to find out what had ultimately happened to Justin during the surgery.
Nine years and nine months after Justin’s death, Dale received a call from a physician with whom she worked on patient safety issues. He said that he was informed that a colleague of one of Justin’s providers confided that he couldn’t live with himself any longer, knowing that Dale was still searching for the truth. He went on to say that the hospital doctors, administrators, and attorneys had known from the beginning that Justin was overdosed on the medication phenylephrine after the physician reached for the wrong medication in error and used it in overdose proportions.
Dale wrote a letter to the physicians and administrator of the hospital in which she said, “Although this physician’s informant’s information was troubling, it was also healing. You see, parents blame themselves when something happens to their child. It was our duty to keep him safe. You may not understand this, but I could literally feel the burden of the unknown melting from my shoulders even though I have yet to hear the rest of the story.2
Dale shared this new information with the physicians who had helped her over the years and has presented the case study for multiple healthcare conferences, medical schools and Grand Rounds, while also authoring articles on the topics of patient safety, compassion and disclosure. She said, “Learning from the event is important to me. My child did not die in vain.” And, we can do better.
Justin’s HOPE Project at the Task Force for Global Health
As told by John James
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.
As told by Lewis' mother, Helen Haskell
Lewis Blackman was one of those children who just shines. For all his short life, he seemed to float effortlessly to the top no matter what he tried to do. He was a soccer player, a saxophone player, a writer, an actor in community theater, one of the top students in our state of South Carolina. We, his parents, thought he was the most brilliant boy in the world. We thought he would grow up to set the world on fire.
Two months after Lewis’s fifteenth birthday, we took him to a large teaching hospital for a minimally invasive operation to correct a defect of the chest wall, pectus excavatum. The surgery, as far as we know, went uneventfully. Afterward, Lewis was put on heavy doses of opioid pain medications, delivered through an epidural. He was also prescribed a full adult course of the IV painkiller Toradol, a regimen not now recommended for young teens. Even so, his pain was difficult to control. His opioid dose was continually increased. The Toradol, which had no discernable effect, was faithfully injected every six hours.
With so many painkillers, Lewis’s breathing was affected. He was monitored by pulse oximeter, and his oxygen saturation levels were never what they should have been. Because he had a history of asthma, the hospital staff did not seem to take this seriously. The day after surgery they moved the setting for the alarm from 90% saturation down to 85%, a very low level. They were concerned that the alarm would keep Lewis awake.
On Sunday morning, the third day after surgery, Lewis was suddenly stricken with an excruciating pain in the area of his stomach. This was very different form his surgical pain and much more sever: 5 on a scale of 1 to 5. Initially concerned, the nurses eventually decided he had an ileus, severe constipation caused by the epidural narcotics. That assessment stuck like a burr as Lewis’s condition spiraled downhill. His belly grew distended and bowel sounds ceased. He became paler and paler and his temperature dropped. His heart rate skyrocketed. He ceased to urinate. Because it was a Sunday, the only doctor we saw was an intern, five months out of osteopathic school. When we requested an attending physician, another resident came (and neglected to inform us of his status). All confirmed the diagnosis of constipation.
That night, Lewis’s oxygen saturation dropped so low that even the 85% pulse oximeter setting was too high to prevent the alarm from going off. The nurse turned the pulse oximeter off, again in the hope that Lewis could get some sleep. But in his state there was no sleep. We spent the night trying to manage his agonizing pain, nausea, and growing weakness. When the vital signs technician came the next morning, she could not find a blood pressure. In response, the intern and nurses spent 2 ¼ hours scouring the hospital , looking for a blood pressure machine or cuff that would register a reading. In all, they took his blood pressure 12 times with seven different instruments. The crisis was declared over when a second-year resident arrived from the operating room and, in a fit of wishful thinking, announced she had found a normal blood pressure. Just over an hour later, Lewis went into cardiac arrest and died. No attending physician had ever been called.
An autopsy the next morning showed a perforated duodenal ulcer, a well-known risk of the medication Toradol. From a known deadly side effect of a drug he was taking, Lewis had developed peritonitis and lost nearly three-fourths of his blood over the course of 30 hours, while his young caregiver assured us that nothing was seriously wrong.
What happened to Lewis was a result of a system that had no care for its patients. Residents and young nurses were left alone to perform jobs for which they were inadequately trained, with no ability to recognize a declining patient and no one to turn to when questions arose. Our family was also left completely isolated without a way to call for help. Trends in vital signs were not noted or even charted. The one objective monitor, the pulse oximeter, was first modified and then silenced. No one was there to speak for the patient.
As told by Leah's mother, Lenore Alexander.
Ten years ago, Lenore Alexander’s healthy, 11-year-old daughter, Leah Coufal, underwent elective surgery to correct pectus carinatum at a prestigious Southern California hospital.
Though the surgery went well, Lenore awoke at 2 a.m. on the second post-operative night to find Leah “dead in bed,” a victim of undetected respiratory arrest, caused by the narcotics that were intended to ease her pain. If Leah had been monitored continuously after the surgery, staff would have been alerted and Leah would probably have been rescued. But ten years later, knowing that the standard of care remains unchanged, Lenore works to make continuous postoperative monitoring the law (Leah’s Law) to help prevent other children suffering the same fate as Leah.
Visit http://leahslegacy.org/ to learn more.
As told by John’s wife, Pat LaChance.
John LaChance was a Christian who served His Savior at Tabernacle Baptist Church as a Sunday school teacher, youth leader, choir member, and trustee with faithfulness and joy for 14 years.
He was a well-liked and respected man at church, in the community, and at work. He had a great sense of humor and an infectious laugh. His life verse was, “A merry heart doeth good like a medicine.” Proverbs 17:22
John was a loving son and brother. He was my husband for 27 years and a wonderful father. He cared for our three children and me unselfishly and with loving devotion. He was the hero of our lives.
John was a patriot who served his country on land and at sea in the United States Navy with dedication and pride for 21 years. He quickly advanced through the enlisted ranks and onto becoming a naval officer. Upon retirement from active duty, he continued serving the Navy as a government contractor. He was truly an officer and gentleman. John was a selfless man who gave freely of himself in life and then in death through organ donation.
On March 15, 2007, John underwent his second routine rotator cuff repair surgery. Due to numerous adverse reactions to several pain medications after his first surgery, his surgeon recommended John spend the night following the surgery for pain management. He was to come home the next morning. John also had a condition called sleep apnea, which when mixed with opioids, puts a patient at a much higher risk of respiratory depression. This condition was dismissed by all attending medical staff, and a CPAP machine was not ordered. Immediately following surgery, John seemed to be doing well. His pain had been managed with a shoulder block and patient-controlled morphine through a PCA pump. During the afternoon, John became very hot and uncomfortable but had no fever. The nurse dismissed this as a side effect to the morphine. By early evening, the shoulder block wore off. The morphine was not managing his pain but was causing extreme vomiting. John was removed from the PCA morphine, pulse oximeter, and supplemental oxygen as directed by the surgeon (this was the hospital’s standard of care), and was given an injection of Dilaudid for pain and an anti-nausea medication. This change was prescribed by an on-call doctor who was never informed of John’s sleep apnea. John was assured the Dilaudid would give greater relief as it could be given more often and at higher doses.
Within less than a half hour, he was what I can only describe as comatose. He never looked at me or spoke again. Because he had not been able to urinate, which the nurse also attributed to the morphine, he had to be catherized. A very private man, John normally would have been unnerved by this. John never flinched or blinked an eye. Motionless and staring at the ceiling, John did not respond. The nurse stated that male patients normally experience a fair amount of discomfort from the procedure and she was quite surprised at the lack of any response from John, but dismissed it. (Throughout the day and evening, his vital signs were giving indication of possible patient distress, but these were dismissed as well.) Shortly thereafter, John seemed to be sleeping well, so I went home for the night with the intent of taking him home the next morning.
Instead, I was awakened by that dreaded telephone call from the hospital around 5:30 the next morning. The head nurse from the orthopedic ward informed me that my husband had taken a turn for the worse and had been moved to ICU and was on life support; the doctor needed me there immediately. I was later told that a nurse making rounds around 4:20 a.m. found John unresponsive in his bed. The “crash team” worked on John for over 40 minutes. They were able to regain a heartbeat, but his brain had suffered a major brain hemorrhage due to anoxia – or lack of oxygen. John was brain dead. We lost him – he was gone from our lives. The nurses and doctors responsible for John’s care did not appreciate the dangers of the respiratory depressing effects of opioids upon patients with sleep apnea. We believe John’s death could have been prevented if his nurses and doctors had not simply dismissed his sleep apnea and if he had been placed on a CPAP machine and/or kept on the pulse oximeter throughout his overnight stay.
As told by Christopher S. Jerry
Emily Jerry was diagnosed with a yolk sac tumor about the size of a grapefruit when she was about 18 months old. Her doctors and nurses assured me that Emily’s cancer was not only treatable, but curable.
Emily endured months of surgeries, grueling testing, and rigorous chemotherapy sessions. Emily’s treatment had been so successful that her last MRI showed there wasn’t even any residual scar tissue. Emily’s doctors said it was as if she never had cancer.
Regardless, she was scheduled to begin her last chemotherapy session on her second birthday, Feb. 24, 2006. This was just to be sure that there were no traces of cancer left.
Sunday, Feb. 26, after the third day of her last chemotherapy treatment, Emily awoke from her nap groggy. She kept trying to sit up and asked her mom to hold her in her lap. She kept grabbing her head and moaning that it hurt. Emily spotted her mother’s can of Coke that she had on the tray and begged to have a sip. She sipped the rest of the can through the straw in a matter of seconds. She cried some more before she started screaming, “Mommy, my head, my head hurts! MY HEAD HURTS!”
I was just walking in as nurses were grabbing her from her mom’s arms. Emily went completely limp and the nurses began to resuscitate her. Within the hour, my precious daughter was on life support.
Emily wound up brain dead and on life support – essentially dead due to the massive brain damage she had incurred. Our Emily was killed by an overdose of sodium chloride in her chemotherapy IV bag.
We had planned a belated birthday and a cancer-free party for her. Instead, Emily was delivered to the Cuyahoga County Morgue.
My family has been completely destroyed by the preventable and tragic death.
A pharmacy technician who had been working for the hospital for a number of years decided not to use a standard prepared bag of sodium chloride solution (with less than 1% of sodium chloride solution).
Instead, the pharmacy technician filled a plastic bag with a concentrated sodium chloride solution of 23.4%, which she had compounded herself.
When the pharmacy board investigators and others investigating Emily’s death asked the technician why she had made this outrageous error, she replied that she did not know. The pharmacy technician was asked if she knew that an overdose of sodium chloride could result in death. She claimed that she was not aware of that fact. How can a person who works in a pharmacy and compounds medications daily not know that?
At the time of Emily’s death, Ohio didn’t even register pharmacy technicians. In fact, there weren’t even any training or licensing requirements.
As told by Amanda’s parents, Brian and Cindy Abbiehl.
As parents of a teenage daughter, our worst fears were that our daughter would become pregnant, take drugs, or drink and drive. Never did we imagine that our daughter would go into a hospital with an infection, be hooked to a patient-controlled analgesia (PCA) pump to manage her pain, and never come out alive; but this is exactly what happened.
Our 18-year old daughter Amanda was admitted to a local hospital on Thursday, July 15, 2010. She was dehydrated, had lost at least 10 pounds, and had a virus that was causing a great deal of pain in her mouth and throat. Our family physician’s plan was to rehydrate her and put her on medications for both viral and bacterial infection. This was to help jumpstart her system and hopefully she would be back home with us in a couple days.
The rest of Thursday was a rough day for Amanda. The morphine that the hospital staff was giving her was not getting rid of the pain. Moreover, Amanda’s tonsils and uvula were extremely swollen. She was still not interested in eating; even drinking hurt. To help manage her pain, Amanda was put on a PCA pump that allowed her to control the pain medication used (hydromorphone).
The next morning, Amanda was found unresponsive and died.
We realize that we cannot get our daughter back, but we can raise awareness regarding respiratory depression, and in honor of our daughter we intend to make this our lifelong mission. We have started A Promise to Amanda Foundation to remind patients, their families, and their healthcare providers to always monitor PCA use with oximetry and capnography.
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