On a given day, approximately 1 in 31 patients has at least one healthcare-associated infection. In addition to the significant prevalence, any of these infections could lead to sepsis and become life-threatening.
Our APSS outline actionable steps healthcare organizations should take to successfully implement and sustain behavior change for high reliability, shared understanding, thorough communication, and meaningful person-centered care across the organization.
Actionable steps include:
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As a patient with Common Variable Immune Deficiency, I have had the unfortunate experience of getting sick from previous hospital admissions, especially post-operations.
In preparation for a major jaw surgery, my surgical team had been made aware of my previous medical history and requested a private room with a private bathroom to reduce exposure to others in the hospital. This was extremely imperative as my procedure was occurring in my mouth and nose, leaving many open incisions for possible infections. Following surgery, I was intubated for an entire day due to airway swelling and upon transferring from the ICU, I was told I was being moved to a room with a roommate. I reminded the hospital staff that I had an immune deficiency. However, the charge nurse had told me that they will not cater to my health needs.
I had to call the on-call surgeon to explain on my behalf my need for an individual room. My emergency contact also called and spoke to the charge nurse to express the prior infections I have gotten from hospitalizations. After finally agreeing to transfer me to an individual room, I was transferred to a room where a patient was just discharged with contact precautions. To my disbelief, the patient’s gown and clothes were still in the room and it was clear that the room had not been cleaned at all. I refused to enter the room even with staff reassurance that it was okay for me to enter without the room being cleaned. I waited several hours in the hallway for the room to be partially cleaned.
As a result of this hospital experience, I ended up with a severe, rare, triple bacterial infection that took seven months to clear and has permanently altered the results of my surgery. It has left me with severe scar tissue on my face, causing a deformity. Till this day, I still can not breathe properly due to the consequences of this infection.
I’m a registered nurse, and have worked in healthcare for almost 30 years. In 2011, my husband had a bout of diverticulitis. Subsequently, the surgeon recommended an elective laparoscopic colon resection. So, in 2012, he went in for this simple procedure.
When he arrived at the floor, I was told that for the most part it went well. Although, he did have lap surgery, they also decided to give him a temporary ileostomy. However, when I arrived to see him around 4pm post-operative, he was sweating, pale, very little urine output in his foley and his abdomen looked like he was nine months pregnant. I called his nurse into the room, who also was a friend of mine. She agreed that something was wrong. She called the doctor and started a second IV. The doctor came and said he was dehydrated. I argued that he looked like he was internally bleeding. He said he was fine, but agreed to order labs.
I asked also for an X-ray or CT scan and was told that was unnecessary. Labs demonstrated that there was a blood loss, and his potassium was elevated to about 7. (Elevated potassium can be a symptom of internal bleeding). The MD came back, and ordered a type and cross and transfusion of two units, plus a bolus, because his blood pressure was under 90 systolic. He still refused an X-ray. He just said well maybe he is having some sepsis, and I don’t believe he is bleeding, “I believe it’s just blood loss from the surgery”. He said he believed the potassium was in error, it wasn’t and he was give d50 and insulin to bring it down.
The hours ticked by, and my husband continued to deteriorate, and around 11pm, they transferred him to ICU. I went home, because he was in the hands of the ICU intensivist, and we 5 kids, four of whom were still in school. Around 1am, I got an urgent call from the ICU intensivist that he had ordered a CAT scan. My husband’s belly had an estimated 2 liters of blood in it, and they were calling in a trauma surgeon. His hemoglobin was about 5 and mass transfusion protocol was initiated. When they opened him, my husband was full of blood. The trauma surgeon was able Patient Safety Movement Foundation | patientsafetymovement.org to stop the bleeding, but unable to close his belly. He was brought back to the ICU intubated, and belly packed. He went back to the OR after the internal swelling went down, and was closed. It was a year-long recovery. This was due to failure to rescue. If I had as a family member called a rapid response at 5pm, this could have been avoided. My husband took a long time to recover. My husband almost died.
I’m thankful that he is alive, but his long recovery could have been avoided if he had had the proper interventions early in the evening. After the event, people couldn’t believe that this could happen to a nurse’s husband. IF this could happen to my husband, it could happen to anyone.
My Mother was eager to have knee replacement surgery so she could get back to her social activities. The other knee surgery she had 10 years prior had been such a success. She didn’t hesitate when surgery was discussed as an option at the orthopedic consult with my sister and me present. Mother was required to get her three physicians to consent to surgery and that took three months. Her cardiologist ordered several tests to ensure her heart could handle surgery.
Everything seemed to go well after surgery with 5 days in the hospital, 2 weeks in the rehab facility and 1 week with home care. Then it all went downhill from there with pain from surgical infection, a second surgery to clean the infection site, a return to rehab, a third hospitalization, then hospice care at home, then death from the infection that could not be resolved.
She probably would have died sooner if I hadn’t been present to see a medication error of two blood thinners, which I then understand was the cause for the bleeding into her catheter collection bag. I approached the doctor who confirmed she didn’t need to be on two blood thinners and thankfully the urine in the bag began to clear up the next day. We aren’t sure where her pressure ulcer (bed sore) started – hospital or rehab facility – but it never resolved either.
My Mother experienced three incidences of preventable harm: 1) surgical infection, 2) medication error, and 3) pressure ulcer. After her death, I used her story in my consulting work with healthcare professionals. Since they were so appreciative of the learning opportunity, I decided to write a book and it was published in 2017: “The Perils of Un-Coordinated Healthcare: A Strategic Approach toward Eliminating Preventable Harm.”
Now, as a Board-Certified Patient Advocate, I’ve turned my focus to spreading information to the general public about the role that individuals play in preventing Patient Safety Movement Foundation | patientsafetymovement.org medical harm to themselves and their loved ones. That role must be elevated from patient to partner in care. I wish to thank the Patient Safety Movement for taking action to reduce preventable harm. We must all share our stories to expose harm so together we can eliminate it.
Our son Josh, a 27-year-old skydiving instructor living in Colorado… He was funding his college education to become a child psychologist by teaching skydiving. During the holiday and on his final jump, a cold air density pushed his parachute inward, throwing him to the ground at 60 miles per hour, breaking his femur and fracturing his skull.
My wife Victoria (his step-mom) and I flew to Colorado to be with him and after 5 weeks in ICU, Josh seemed to be on a better road to recovery. In fact, he was doing so well that they told us we could go back home as he was admitted to a nearby physical rehab facility. But suddenly, 6 days into rehab, Josh began feeling nauseous and running a 103-degree temperature.
For these reasons, he was transported back to ICU to determine why. Enterobacter aerogenes, a dangerous gram-negative bacterium was found to be present in his cerebral-spinal fluid.
Later that night we received a phone call – the worst call of our lives; it was nearly midnight. The voice on the other end was his neurosurgeon. He told us Joshua had suddenly coded and stopped breathing, becoming comatose with no respiratory effort whatsoever. He’d been attached to a ventilator to save his life while Josh’s neurosurgeon was called from home. Upon arriving he immediately performed a ventriculostomy at which point he told us Josh awoke and was responsive again.
He said the ven-TRIC procedure saved his life but the ensuant spinal cord injury had tragically, permanently interrupted his ability to breathe on his own ever again. Josh had experienced something called a brain herniation with irreversible spinal cord damage down to the thoracic spine making him a permanent ventilator – dependent quadriplegic.
We took the next plane out of Atlanta back to Colorado and during the entire flight I kept asking myself how did Josh’s spinal cord get damaged all of a sudden.
On October 22, 2006, our son died – but not from his original injuries; Joshua died unnecessarily from hospital acquired bacteria that caused so much pressure to be put on his brain and sepsis finally took over and ended his short but unforgettable life.
Within a week, we discovered that the neurosurgeon had not been honest with us. He first performed a lumbar while Josh’s brain was swelling and then performed a ventriculostomy, therefore damaging Josh’s spinal cord…
Soon it was November. Our lives were in shambles. By the end of that month … really … I saw myself as a defeated man.
I had become a person I didn’t recognize; one I didn’t like very much and didn’t want to be. All my joy was gone. I felt searing guilt. I felt shame in having let down our son. I felt I had failed in every way it was possible to have failed as a parent.
Watching your son suffer pain, the effects of a MRSA infection, Delirium, paralysis and finally, death far before his time from something that was probably preventable will do that to you, I think.
In my mind, I had failed miserably in saving our son from what was a nightmarish descent down a dark and hideous hole into preventable medical harm, hopelessness and ultimately – unbearable loss I could not seem to wrap my head around.
It seemed I was drowning in quicksand with feelings of sadness, frustration, grief and as you can well imagine – a certain amount of anger.
Back home in Atlanta there was little left for Victoria and me to say to each other. Our house was painfully quiet and uncomfortably still. It felt dead there. I just sat in a chair at my desk in our home office looking down into my lap, gazing at nothing for hours upon end, day after day. Every day. Clearly, I was somewhere else; and wherever it was, it was not a place I should be.
Crawling into bed each night we’d turn out the lights and mutter whispered goodnights, only to, more often than not, hear the other break into muffled weeping. There in the darkness, turning towards each other in a clutched embrace, we longed for some sort of comfort from our shared pain only to find that for us, there WAS none.
Our marriage was fast decaying into a miserable wreck of bitter silence. I kept thinking … we had just lost Josh and now we were losing each other. Our happiness, our comfortable normalcy, the tight bond we’d always shared and the friendly, loving connectedness between us was gone and for me, I could hardly bear it.
As the days passed all I knew to do was to be left alone to my grief.
It was then with much quiet time on my hands that I made up my mind to search – search for an explanation of not only what these infections were but how they could be prevented and how we could keep this sort of harm from happening to anyone else ever again.
Now I had a personal mission and suddenly it was like it transformed me into a man on fire. Little did I know that for me, MORE CHANGE was again on the horizon and for a second time in as many months, I would never be the same again.
After hearing what had happened to our family, the CDC graciously invited us to meet with them at the end of 2006. They told us that in the U.S., 2.1 million patients were becoming infected annually with 100,000 patients a year dying as a result of becoming infected from their medical care. We were stunned beyond belief.
Encouraged by the CDC to bring focus to the specific problem of HAIs, Victoria and I worked day and night for a month, and straight through the holidays of 2006.
Both Victoria and I welcomed the task and as the hours, days and weeks passed, all of our time focused on our new shared mission. The idea of the positivity of it – the idea of doing it for Josh and for others who needed the information seemed to be healing us; bringing us close together again.
By January 1, 2007, we had begun Safe Care Campaign with an educational website focusing on bringing to light the problem of infections and helping to prevent the failures associated with them.
When Josh was dying, more than 70 of his friends waited for 2 days in the lobby of the hospital for their last chance to say goodbye to their dear friend before he left them forever.
Every one of them had their own favorite memory of him; fun, silly, private, poignant stories of some hilarious antic or remarkable, wonderful moment or adventure – a single, common thread that underscored their unique relationships with him.
When Josh was dying, he was only able to see in the direction his head was pointing because he had become completely paralyzed. He couldn’t move any part of his body at all but he still had facial expressions; he could still move his lips and his eyes – he could see and blink.
As his friends said their goodbyes, I stood helplessly frozen at the foot of Josh’s bed; I knew he could not feel my hand on his ankle or even see me as I stood there just outside of his peripheral vision but still, I remained there with my hand glued to him anyway, grateful just for the time we had left.
Standing there silent in the shadows, I overheard his friends utter these amazing spoken remembrances – important memories of better days – they reminded Josh of these times. Standing there in the shadows I witnessed momentous words spoken well and spoken genuinely – the kinds of words you don’t just say everyday – the kind that you save up for special times.
And when Josh friends were done and gone, I watched my own wife, Victoria, who I love more than my own life, breaking inside as she said goodbye to her dear young stepson.
When everyone had finished, I knew it was my turn to say goodbye. I remember taking one giant step towards Josh and then another; suddenly moving into his periphery. I knew when I was within his periphery because when I entered It, he smiled so big … like he ALWAYS did when I walked into a room.
Seeing him smiling at me, I broke into tears and made some transparent and lame comment about what a crybaby I was. I moved close to him now – bending over him, maneuvering my own face just inches from his, tilting my head to mirror the direction of his own. I remember him looking at me thoughtfully – determined – straight and deep into my eyes and smiling so genuinely – unafraid – being strong like he always was.
I remember hating that I had to smile back at him but I did it for his sake, touching his forehead and cheeks with the tips of my fingers and cupping his cheek in my hand so he could actually feel me there with him. I wanted so badly to comfort him now because I didn’t want him to be sad or afraid as he laid there upon what was to become his deathbed.
For what seemed like many minutes, I remained silent – just looking at him but now his smile disappeared and a furrow appeared in his brow and I knew what it meant … He wanted to know why I wasn’t saying anything.
There in that awful room, I sat there knowing full well that I had no words in me for him. I had nothing at all to say and I was ashamed of that.
I was helpless to comfort him now because I had always been “PEP-TALK” Dad. “TRY AND TRY AGAIN” Dad. “THINGS’LL BE BETTER TOMORROW” Dad. Now I had no words for him – nothing at all to say that was positive, comforting or wise.
In that dark room, on that dark day, not wanting to fail in this important moment between us – with my very best feigned smile, and a gaze that was uncomfortably long and awkwardly silent – I remember telling my brain to make my mouth open, hoping that I would somehow find the right words to say – and you know what … when I did … quiet, gentle words DID fall out.
What came so simply – naturally and directly – were words from deep inside – words I didn’t EVER have to think about – authentic, loving words I’d had for him all along. There in that room – suddenly, easily … with authentic words that expressed everything I ever felt for him inside, through tearful eyes, I simply said: “I love you SO much”.
And you know what? He seemed satisfied with that, I could tell, because that inquisitive expression on his face and the furrow in his brow disappeared – he smiled at me once again and then his eyes began to move across my face – from side to side, slowly and intentionally scanning it as if he were memorizing my features for another time, another place when he could see it no longer. Finally, Josh let his gaze fall back onto my eyes and mouthed back the words, “I love you too Pop”.
Josh died after that. After having had to say his goodbyes to dozens of friends and close family with a muted voice and mouthed words, unable to draw breath to even whisper his farewells, relying entirely on facial expressions to communicate profound thoughts only he could know.
My name is Candice Sanders. I am a 36 years old single mother to my 3-year-old daughter. During my C-section with my daughter, I contracted MRSA (Narcotizing Fascitiis), Cellulitis, and my blood was gram-negative. I had to undergo 7 surgeries and 9 blood transfusions and I was separated from my newborn for a month; while in a California hospital. I had 2 surgeries in Las Vegas and because the infection was spreading so fast, I was air lifted to another hospital, where the team of surgeons saved my life.
Although I survived the horrific experience, I am left with what looks like a botched tummy tuck but what is actually a huge scar going across my stomach that pains me every day. I sought legal counsel only to be told that I could’ve caught MRSA anywhere and there is nothing that I can do about it. At that time, I was on a walker with an healing wound and I did not push for further legal assistance. Everyone told me that it isn’t worth fight the hospital who did this to be because it will be too costly; so I gave up. I just focused on healing and making sure that I was in good condition to care for my newborn. But here I am, 4 years later and it still bothers me that I was not able to share my story or received any type of justice for what had happened to me during my C-section. I am blessed to have survived, but I have to look at myself in the mirror every day and stay reminded that I almost died giving birth to my daughter which was no fault of my own. Going to several Plastic Surgery consultation just to be told that it will cost over $20,000 for me to have my stomach reconstructed.
After 3 months of extensive medical treatment for a devastating illness it is heartbreaking to realize that my husband contracted a serious debilitating illness while in the hospital that is designed to protect and offer treatment for the specific illness he was diagnosed with.
On Nov 17, 2017 my husband Jim entered the hospital for flu like symptoms. On Dec 1 he was diagnosed with Acute Leukemia and was transferred to another hospital on Dec 6 to begin a three week chemo therapy program in an isolated and sterile ward designed specifically for Leukemia patients. Progress was moving along nicely, his numbers were heading in the right direction and Jim and doctors were pleased as was I. Jim even commented that on his worst day he felt he could make it through this and that it wasn’t that bad. Since so many improvements have been made to the chemo medications we were hopeful. We hadn’t been able to celebrate either Thanksgiving or Christmas, and I don’t wish anyone the experience of spending Christmas Day in any hospital, we were looking forward to his coming home for the New Year. We were so close to coming home when he came down with CDIF and Jim was rushed into emergency surgery to remove his colon. From there it was downhill. Since chemo was not able to be restarted due to his now compromised situation, my husband of 45 years passed on March 3, 2018. It is beyond belief how this infectious disease and others are taking so many lives and there doesn’t seem to be an answer. How is that possible?
I have filed complaints with Medicare, CDC, the Department of Public Health and Environment as well as the hospital the event took place. I was invited into PSL for a conference with their infectious disease team. I had no illusions as to what the outcome of that meeting was going to be, but, when my husband looked at me one day and said “something happened to me in this hospital, don’t let this go” I promised him I wouldn’t.
In reality I wonder what the purpose is of filing complaints with all the appropriate departments if nothing ever changes. Is it just for statistics? Does Medicare and CDC care? Are there any consequences to a hospital that does not have or perform adequate safety protocols? When an infectious disease team states that they are ranked right in the middle on a national basis, should they really be proud of that? Especially when they are the only hospital in a 4 or 5 state region offering this kind of isolation ward for Leukemia patients.
How can we stand by without standing up?
The Love of his Life, Shelley Hawthorne
The last normal day of Michael’s life began like any other. He was sitting on the couch playing with the family’s new puppy. Suddenly, he inexplicably passed out. When Michael regained consciousness, the 22-year-old EMT and nursing student knew he had to get to the emergency room right away.
At the time, a doctor suggested that Michael had probably had a seizure, a side effect of Wellbutrin, an antidepressant he had been taking for smoking cessation. But a CT scan later revealed a three-millimeter dot in his brain. The Skolnik’s believe that the neurosurgeon made a quick and deadly rush to judgment. He had warned that Michael was lucky to have survived his initial seizure and that he needed surgery immediately.
“He said, it’s a very simple operation,” Patty recalls the doctor saying. “You don’t even go in the brain. All I do is go in and excise the cyst.” The Skolnik’s say the doctor claimed to have performed many such surgeries, but he later admitted in a legal deposition that Michael’s procedure had only been his second.
Whatever the case, no cyst was removed or revealed. An exhausting three-hour operation ended six hours later, and Michael was never the same again. Other physicians have since told the Skolnik’s that at most, a shunt should have been placed in Michael’s brain and that the elusive dot was likely benign. The seizure, some doctors say, was likely a bad reaction to the Wellbutrin.
The neurosurgeon, who would later establish a […now closed…] medical practice at Western Plains Neurosurgery in Scottsbluff, Nebraska, has been unavailable for comment to the press. He reportedly still lives in the Denver area and plans to open a new practice in Glenwood Springs, according to a Western Plains receptionist.
The Skolnik’s become visibly angry when they describe the way the neurosurgeon announced Michael’s prognosis after the ill-fated surgery. “He pulled back his hat and says ‘I’ve had the worst year,’” David recalls angrily. “We were a family that made decisions together. This changed who we are. It was our life forever with Michael. Now, it’s still our life, but without Michael.”
The family’s 32-month nightmare included multiple surgeries, systemic infections, deep vein thrombosis, pulmonary embolism, DIC and sepsis. Michael suffered from paralysis, psychosis, respiratory arrest and an endocrine-system failure that caused him to gain more than 100 pounds. He was partially blinded and unable to speak. He was fed through a tube in his stomach.
On June 4, 2004, Michael looked into his father’s eyes, mouthed “I love you” and died.
It’s April 1, 1986. Seven-year old Michael Skolnik is up to his usual tricks, but this time, he is armed with a convenient little alibi called April Fool’s Day. The mischievous child is slowly creeping up behind his unsuspecting mother… when all of a sudden, crack! A perfect shot, over and easy. A broken egg scrambled on Patty’s face.
“He just thought that was the funniest thing he had ever done,” Patty recalls, as a glow quickly covers the same face. “My first reaction was, ‘What have you done?’ But then, you had to laugh because Michael just made you laugh. He was such a character.” The laughs come as easy as the tears when Patty talks about her only child. “Your life is forever changed and you hope there is something after death so you can believe you will see your child again,” Patty says. She remembers Michael’s realization, at 13, that he did not believe in God.
“What if you die and you find out there is a God, what do you think God will feel?” Patty quizzed her son at the time. “Well, if God is supposed to be all forgiving, he’ll forgive me for not believing in him,” the young teen retorted.
The exchange has resonated with Patty for more than a decade. “I thought that was pretty profound for a 13-year-old,”she says smiling.“Somehow, some way, I feel Michael is right there behind me pushing me along.”
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.
My mother, Vera Eliscu, was an alert, active, highly intellectual retired classical dancer and business-woman. In January 2009, at the age of 90, she was admitted to the hospital for treatment of a foot ulcer and cellulitis. An MRI showed the bone in her foot was unaffected.
After five days in the hospital Mom was released to a long-term care facility with a two-week antibiotic prescription and instructions to stay off her foot. Within eight days at the long-term care facility she had contracted the intestinal infection Clostridium difficile and developed pneumonia in the bottom of her left lung. She was readmitted to the hospital. While an aide was feeding her the first night in the hospital, she aspirated food into her lungs. She developed double pneumonia and was sent to the ICU, where she was intubated and put on a ventilator. In the ICU she was extubated twice but her course was uneven and after a week it was determined that she needed a tracheotomy, PICC line, and feeding tube. She received a size 7 tracheotomy tube.
After 10 days in ICU, Mom was transferred to a step-down unit and then a long-term acute care facility for vent-weaning and physical therapy. She did very well weaning and was getting out of bed and ready to walk again. We spent hours together in her room reading from her precious art books and discussing the state of the world. We looked forward eagerly to Mom coming home.
Eleven days after Mom entered the long-term acute care facility, a temporary respiratory therapist changed her tracheotomy tube to a size 4, a very small tube that is difficult to suction. The tracheotomy tube slipped out unnoticed the next day as the nurses were turning her, leaving her without oxygen for 5 to15 minutes. Oxygen was not given promptly or correctly and Mom was in and out of a coma. She was visibly in pain and unable to speak or move. I could see the pain and fear in her eyes, but she never spoke again.
Within three weeks of the tracheotomy tube event, Mom had developed a 13-cm Stage 4 bedsore. The long-term acute care facility did not offer a wound vacuum, because they did not have one, and they did no physical therapy to prevent bedsores. Mom became malnourished, was overloaded with fluids, contracted Clostridium difficile, and developed a urinary tract infection. Eventually, she was transferred to a different long-term acute care facility where she received excellent care, but it was too late. Mom passed away in August 2009, six months after her anoxic brain injury and eight months after being admitted to the hospital for a foot ulcer.
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.
“An underlying medical condition” is no excuse for lethal medical errors.
Millie Niss was a much-published web artist and poet. She was my only child and a wonderful daughter. She was a talented patient advocate due to a lifetime of painful and debilitating illness, diagnosed as Behcet’s Disease in her early 30s.
Behcet’s is a rare, auto-immune, inflammatory disease which causes vasculitis anywhere in the body. It is often characterized by severe joint pain, skin lesions, and vision loss. It is rarely fatal, but involves frequent medical intervention.
I am a retired psychologist with decades of experience in advocacy. Yet our experience and our instinct that Millie’s care in a community hospital ICU was going desperately wrong could not save Millie.
Millie died November 29, 2009. She was 36 years old. She entered the ICU on November 1, 2009 with swine flu and was intubated. But she was not silenced. After she had recovered from the flu, but a week after becoming paralyzed from the chest down, Millie wrote:
I actually asked Dr. W, if I was still at risk of relapse, and she seemed quite confident, but I sensed something was stewing ‒ I think I got a secondary infection whose symptoms didn’t show until the first day upstairs [brief transfer out of ICU]. I became feverish and my throat felt suddenly worse when it had been OK earlier. Now I hope we can treat the infection successfully FIRST before trying to wean [off the ventilator] at all. (Nov 21st)
What did we know and when did we know it?
We did not know the hospital:
Millie had endured and been damaged by medical care previously ‒ often enough that she had requested an autopsy if she died.
The autopsy revealed her cause of death as osteomyelitis of the 8th thoracic vertebra with near total necrosis of the spinal cord, severe epidural inflammation and abscess: a missed diagnosis.
The New York Department of Health issued two citations related to Millie’s care.
-Martha Deed, Ph.D., Author, The Last Collaboration (Furtherfield, 2012). A multi-genre fatality review.
“For 36 hours we celebrated a homecoming…”
It was March 25, 2011, and the day had finally arrived. After years of dreaming about becoming a mother, Tara Hansen had spent the previous nine months preparing with her husband and high-school sweetheart, Ryan Hansen, for the arrival of their first child and the start of their new life together as a family.
No detail was missed in preparation. Nursery items were purchased and put away for safekeeping. Doctor’s visits were scheduled and plans were made for the delivery. And, as a lifelong athlete and model of good health, Tara was vigilant about maintaining her healthy lifestyle during pregnancy—eating well, staying fit, and fully committing herself to those regular, recommended prenatal appointments. She used to joke with her family that she was the first pregnant woman to crave spinach and mushrooms, not ice cream.
Hers was not a “high-risk” pregnancy, and there were no red flags of any potential problems before delivery.
Yet, just six days after giving birth to a healthy, 9 pound 4 ounce baby boy, Brandon Ryan, at a hospital close to the family’s home, Tara passed away as a result of complications due to childbirth.
“Between our two hospital stays, we spent 36 hours at home as Mom, Dad, and baby. Thirty-six hours looking for all the things we had ‘conveniently’ put away. Thirty-six hours to laugh with each other, and to love one another as a family. For 36 hours we celebrated a homecoming that was a lifetime in the making. That’s it,” Ryan recalled.
“Ultimately, Tara’s death was attributed to an infection from a third-degree tear that had gone unnoticed and uncontrolled, neither caught early enough nor treated aggressively enough to make a difference in saving Tara’s life,” he said.
The condition that cost Tara her life had not come entirely without warning. She began to feel unwell in the hospital after delivery, taking the time to speak to her health care providers about her concerns and suspicions that her body did not feel the way it was supposed to. But Tara was considered a healthy postpartum patient and therefore sent home.
“In my experience, the only person who knew something was wrong was Tara, and she was right. To me it appeared that her complaints just kept falling on deaf ears, with everyone assuming that the pain she was describing was to be ‘expected’ because she just had a baby,” Ryan said.
Following this experience, Ryan wanted to be a part of enhancing the way health care providers communicate with patients. Listening to patients’ concerns and not assuming they’re part of the norm may make a difference in helping to prevent maternal morbidity and mortality.
With a firm belief that sharing Tara’s story has the ability to possibly make things better for the next patient, wife, mother, or family member, Ryan launched The Tara Hansen Foundation in 2012 and now shares the message about the importance of maternal health and safety.
Ryan sees the foundation’s mission of education and raising awareness—the first steps toward real change—as a fitting memorial for the devoted elementary school special education teacher who, with her passing, left her husband with “her final lesson plan, her most important lecture.” It is one he fully intends to see passed on, to be a part of the educational initiatives that it is hoped will enhance a safer, more successful birth experience for all.
One of the educational initiatives the foundation hopes to support is the idea of Stop, Look, and Listen!—a reimagined safety campaign to focus on maternal health and safety. Ryan is pleased to be collaborating with the American Congress of Obstetricians and Gynecologists through their Safe Motherhood Initiative.
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.
Diana Christine Brookins was born on a snowy February afternoon at Fitzsimmons Army Medical Center in 1979. She died on July 25, National Patient Safety Day, 2004. For 25 years, she was the life and light of her immediate and extended family and an entire community of people who watched her grow up onstage in critically acclaimed roles at her mother’s theatre company, HART (Hillsboro Artists Regional Theater Company), just outside Portland, Oregon.
When Diana was 25, she found out she was pregnant and made the decision to keep her pregnancy and her baby. She continued to live and work near her parents in Portland and participated in church and theatre activities. On Palm Sunday, 2004, as she stood in front of her pastor to receive an Easter blessing, Diana collapsed from the pain of a single gallstone.
She was rushed into surgery and a complication ensued immediately. The complication was not acknowledged despite frequent attempts to get attending physicians to believe her. Three weeks following Diana’s original gall bladder surgery, the surgeon did an exploratory operation and collapsed in the operating room upon realizing what permanent damage had been done to this young mother-to-be.
An eight-hour surgical repair followed. Diana lived in two hospitals in critical condition from the 14th until the 29th week of her pregnancy, when her baby daughter was delivered. Within 110 days of having a minimally invasive gall bladder operation, Diana had nine surgeries, nine PICC lines, and developed liver, kidney, and heart failure. MRSA-infected PICC lines had destroyed the tricuspid valve in her heart.
Diana died eight days following the birth of her only child, Julia Belle Brookins, who now resides with her maternal grandmother, Kim Sandstrom Hawskey. Kim is a member of Mothers Against Medical Error and speaks on behalf of patients everywhere. Kim also is the author of Damselfly: The Diana Brookins Story, which is the first full-length theatrical production dedicated to all who have been lost to medical negligence and error.
My second orthopedic surgeon began each day’s medical record with the phrase “Patient Kerry O’Connell is a very personable 48 year-old male with a very complicated arm.” I grew pretty fond of that brief summary of my life. My complications started when I fell off a ladder painting my house and dislocated my left elbow. The dislocation included a fractured radial head and a displaced coronoid process. Years later, I would learn that surgeons call this injury “the terrible triad of the elbow” or in orthopedic slang, just “triad”. The ominous name comes from some very poor rates of successful outcomes.
My first surgery was a medical disaster. The surgeon elected to use an off-label configuration of an external elbow fixator to save 30 minutes on a late Friday afternoon. The configuration placed his drill directly over my radial nerve. He then decided to use small ½ -inch long incisions, which didn’t allow him to see the nerve. The assistant holding the soft tissue guide didn’t keep it tight to the bone; my nerve slid under the guide and wrapped around the spinning drill bit, grinding about four inches of the nerve into mush. One third of the muscles in my left arm became permanently paralyzed. My doctor couldn’t muster the courage to tell me what had happened. We tinkered with electrical stimulation and physical therapy for four months to no avail. Eventually I consulted four other doctors who all told me I needed a nerve graft.
I found a new doctor who transplanted the sural nerve from my left calf into my left arm. Unfortunately long nerve grafts like mine seldom work. Months later we decided to clean the scar tissue out of my elbow to restore supination and pronation. We had a very aggressive post-surgery therapy plan that involved placing my arm in a continuous passive motion machine that would bend my arm back and forth 24 hours a day for a week. The surgery seemed to go well. The range of motion was great. I noticed that a surgical drain tube that came out of my arm just above the elbow was only secured with a piece of gauze. It slid in and out of my bending arm for three days then fell out. This seemingly minor infection which took four debridement surgeries and two months of Vancomycin to kill off. A month after the infection was gone, I rolled back into the OR for last-chance tendon transfer surgery, which thankfully worked pretty well.
Looking back over my two-year ordeal, I am stuck by the profound contrasts I found within the medical profession. I was privileged to meet dozens of competent, kind, and compassionate people who taught me many wonderful lessons in life. Yet I also experienced a handful of the most brutal individuals I have ever known, who caused emotional wounds so deep that they may never fully heal. I told this sad tale to the chief medical officer of a local hospital who replied that he had never met another person who had complicated arm for a reason. It has taken a few years to figure that reason out but I now spend a great deal of my time promoting infection control, helping wounded patients, and promoting compassion and empathy within the healthcare industry. Along the way I have been privileged to meet dozens of fellow wounded patient advocates who are making a profound difference in this world. The bottom line is, perhaps non-fatal medical errors can have the unintended side effect of extreme personal growth.
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.
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.
Alicia Cole had been a successful working actress whose only experience with healthcare was playing doctors on TV. All that changed, however, when she learned in 2006 that she needed a “routine” procedure to remove two small uterine fibroids. Originally, she was scheduled to be home in two days, but that never took place. She left the operating room with a fever, nausea, and pain, and her condition declined from there.
Five days later, during the evening dressing check, Alicia’s mother noticed a small black dot near the incision. In just over an hour, the dot morphed into a quarter-sized pustule. Right then and there, the doctor and Alicia’s mother performed a bedside surgical procedure, cutting open her abdomen and draining the toxic fluid. A terrified Alicia would eventually be diagnosed with multiple hospital-acquired infections including necrotizing fasciitis.
Alicia’s near-fatal case of flesh-eating disease turned her entire midsection into something out of a horror movie and her two-day hospital stay turned into: one month in ICU, two months in the hospital, six additional surgeries, near amputation of her leg, a year and two months of twice-a-day home health care for dressing changes, five months of daily hyperbaric oxygen chamber treatments and three years of treatment at a wound care center for an open, draining abdomen. Six years later, she is still in physical therapy and undergoing pelvic floor rehabilitation.
Alicia’s hospital was later cited for violation of five state laws and ten federal laws for patient safety, infection control, and unsanitary conditions in their operating rooms. An ICU nurse later shared that Alicia was his third patient with NF disease and the only one to survive.
With a talk-to-type program from her bed, Alicia began to share her experience via emails, blogs and social media to educate others. In 2008, she and her parents founded the Alliance for Safety Awareness for Patients (ASAP) as an education and awareness organization. Alicia became co-sponsor of California Senate Bill 158, a measure that helps ensure that hospitals maintain a sanitary environment and mandates public reporting of hospital-acquired infection rates, it also established training programs for hospital infection control professionals. The bill was signed into law in September 2008.
Alicia was also appointed to the state HAI Advisory Committee and has worked tirelessly on the Education and Public Reporting Subcommittee. This year, she also became a member of the State of Wyoming HAI Advisory Group and Chair of the Engagement Committee. She has worked with the Consumers Union Safe Patient Project, lobbied on Capitol Hill, presented at the CMS QualityNet Conference, and was among the inaugural class of patient advocates invited to contribute at the IHI National Quality Forum. All this between making her weekly doctor appointments and physical therapy!
Alicia is also currently a graduate certificate candidate in the Healthcare Management & Leadership Program at UCLA and consulted on the development of the school’s new Patient Advocate Program.
Our daughter Kate lost her life to an incurable cancer. Unfortunately, her journey was made even more challenging by life threatening hospital-acquired infection, misdiagnosis, and significant and permanent loss of lung function from septic shock.
We knew that we were facing a great battle with Kate’s malignancy but we never counted on the ravages of medical error, miscommunication, and medical care that was fragmented and chaotic. We promised Kate that we would finish the book we started together, so that others could learn from our experiences and hopefully avoid many of the adverse events we faced. The book took eight years to complete and it was the beginning of our patient safety efforts.
On an icy February day, a young man suffered a severe brain injury in a motorcycle accident. One of his healthy lungs was gifted to my dad, who was near death from pulmonary fibrosis.
Dad’s nine-hour surgery at “Super Star” medical center, the #1 transplant unit in the world, went so well his doctors predicted he’d be out on the golf course by the 4th of July. A dozen preventable hospital acquired conditions later — seven months after he got his priceless 2nd chance at life — Dad died, never having left the hospital.
We knew that patients should have someone with them during a hospital stay, so my siblings, mother, and I arranged for one of us to always stay by Dad’s bedside for a recovery period estimated at six weeks — tops. We had a vague idea that we might be called upon to speak up as advocates on dad’s behalf, but frankly, we had no idea what that might entail. We simply trusted ourselves to “figure it out” After all, we were all college educated and seemed to navigate life pretty well.
Though I didn’t know the term “patient-centered” at the time, we assumed Super Star, a leading academic medical center, offered such care — that is, care in which the entire system centers on what’s best for patients. This flawed assumption tripped us up over and over again.
One other thing we didn’t know at the time: with Dad’s discharge on the horizon, his fate was sealed with a fall. He was confined to horizontal traction until a neurologist could evaluate him “in an hour or two.” Instead, a full 57 hours passed before the neurologist came to administer a 5-minute test that confirmed Dad hadn’t suffered anything more than a bad bruise. The next morning, Dad was rushed to the intensive care unit with a raging fever and pneumonia, the inevitable result of prolonged traction.
A few weeks later, a blood clot was discovered in Dad’s arm on a Friday afternoon. His doctors decided to “wait and see what happens over the weekend.” So terrified that the clot would travel, Dad barely budged a muscle over the weekend, but even so, the clot landed in his new lung, compromising its function. I asked for a group meeting with his doctors and pleaded: “Please, tell us how can we get in front of anything else that could hinder Dad’s recovery? How can we help?” Arms crossed, their response was that there was nothing we could do.
Then came the infections: MRSA, a deadly staph infection. Then, C. difficile, yet another potentially fatal infection. Both were treated, then re-occurred — relentlessly. On the 4th of July, Dad was nowhere near a golf course.
In September, he was diagnosed with yet another infection, this one untreatable. Mom and Dad held hands for the final time in those final hours.
Despite everything, my mother wanted to thank Dad’s transplant surgeon for giving him a second chance at life and say goodbye. His staff alerted him, and Mom waited three hours, bedside with the body of her husband of 51 years, just to end their last journey together on a gracious note.
The surgeon never came and never called. Finally, she left for home. Dad’s casket was carried in the belly of her plane back to Florida.