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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 Xochitl Amarillas, and I want to share with you the unpleasant and unexpected experience I had in December 2019.
First, I’ll tell you that I’m a television host and I started my career back in 2000. First, I will say that working in television is crazy because you work a lot during important dates, much more than any other month of the year. That’s why feeling tired and having a headache for me was not alarming.
December 24th was my last day working live, since from January 25th to 5th we would be recording programs and I would not work again until Monday, January 6th, 2020.
On December 25th in the morning, I remember how I woke up to go to the bathroom at 3:00 am, and I felt that my stomach was very swollen and I thought “I have eaten too much and this is the consequence. I need to go on a diet. This last month I’ve eaten very badly and I haven’t taken care of myself, and this is the result”.
Anyway, I went back to bed and fell asleep, and I woke up again when my children came happily to my bed saying that Santa had brought them many gifts. I felt very tired! (I thought it was because of all the work I had had during the last few weeks).
We all had breakfast together. I was taking my mom to mass at church at 9:00 am but, while I was driving, I developed a headache. I felt a lot of pressure, so I went home and went to bed. Then, I went back to pick her up at 10:00 am and I still felt very tired, and I noticed my stomach was super swollen. The pressure in my head was intermittent.
At about 12:00 pm, I ate and went back to bed on the couch to watch TV. My children wanted me to play with them, but I felt very bad. I didn’t feel well, I was tired, and my stomach was very swollen. I asked my children to be careful and not to jump on me, because they were playing very close to where I was lying on the couch.
So, I spent around two hours feeling sick and thinking that it would go away when my daughter jumped on me and fell on my stomach pressing it. At that moment, I woke up with a lot of pain in my stomach, and I told them I didn’t feel well. I immediately went to the bathroom, but when I sat down to pee, just as the urine started to come out, I felt a horrible cramp in my belly that made my eyes blur.
I got up as best I could and cleaned up. Shouting, I called my husband and my mother, who were very close by (in the kitchen), to help me because I felt that I was going to faint, and to quickly take me to the couch. They caught me between the two of them, but I didn’t make it to the couch. I had to get on my knees on the carpet and wait for the fainting feeling I was feeling at that moment to go away.
My mother told my husband to take me to the hospital, but I told them it wasn’t necessary, that it would go away and that they should simply put me on the couch. My mother, however, insisted, and my husband took off his pajamas and pulled the car out of the garage, leaving it as close to the front door as possible, since I couldn’t walk because I was so weak at that point.
Between my husband and my mother, they put me in the car and we drove away. Straight to the hospital. My mother stayed with my children at home and, while my husband drove, I still thought it was unnecessary to go to the hospital, as I thought it would go away.
When we arrived at the hospital, my husband helped me out of the car and I leaned on him while driving because I felt that I could fall at any moment and I felt very weak. When we got there, my husband sat me down and, when it was my turn to go to the emergency room, I was asked to get up and walk to the window, but I couldn’t.
I sat down in a wheelchair, and a nurse took my blood pressure while my husband gave out my personal information.
Then the nurse told the person behind the counter that that was my blood pressure and that it was for both arms (pressure 40, temperature 104).
Quickly two other nurses arrived and three doctors approached. In total, six people took me to the emergency room. I only remember one nurse asking me “how are you feeling madam?”, and I answered, “bad, very bad”. There I was unable to hold my head up and I lost consciousness. My husband was scared to see so many people taking me in.
I heard her talking to me when we reached Cardiology, and when I woke up I was already in the surgery, naked with three intravenous lines and a catheter in my bladder, plus thousands of stickers on my chest with wires connecting me to a machine.
Many people came in and out of the room quickly. They asked me how I was feeling. My answer was “bad, very bad”. I noticed my stomach was very swollen and I had discomfort, but I never had any pain. I felt very weak and not strong at all, and suddenly I felt pressure in my head, but it wasn’t painful either.
They took a lot of blood for thousands of tests and samples. I stayed there for several hours until I was transferred to one of the hospital’s new locations. They always knew that what I had was sepsis.
They gave me a lot of different antibiotics, but none of them worked. So, I stayed in the hospital for three days until they got the results of the samples and started me on the right antibiotic. That’s how, little by little, I started to feel better.
Apparently, the infection started in the urinary tract in November, but I never had any symptoms. From there, the infection went to the kidney and ended up in the blood. I never had any pain, I just felt tired and my stomach was swollen.
I was discharged five days later with intravenous treatment. The nurses would come to my house and take my blood every second day. All the hospital staff behaved extremely well.
Back home I had to spend almost three weeks on bed rest until I was discharged when the intravenous antibiotic ran out.
I went back to work, but sometimes my stomach felt bloated again. My husband said that it was my mind and I thought “well, it’s me, and besides, today I ate a lot and I was very shocked by what happened; since I am a super healthy person who never gets sick, not even with the flu, and the times I went to the hospital were because of my two pregnancies”; so, I didn’t think about it anymore.
I made an appointment with my doctor to see her and to be officially discharged, so I had an appointment on January 28, 2019. There the doctor told me I was fine and again explained everything that had happened before.
I asked her to, please, do two more tests to be 100% sure I no longer had the infection, but she said it wasn’t necessary, even though she was going to do it anyway. That was on the Tuesday of the week of Friday, January 31st.
Leaving work, I realize I had several missed calls from an unidentified number. I looked at my WhatsApp and saw that I had a message from my husband saying that my doctor had been calling me unsuccessfully and that she needed to speak to me urgently
I went to get the medication from hospital pharmacy because the tests showed that I had an infection again, so I restarted the treatment.
When it was over, the doctor took another sample (about four weeks later) and it was bad again, I still had an infection.
Finally, the doctor referred me to the urologist and I am currently in treatment for three months.
I would like to clarify that I have never felt pain or any symptoms of urinary tract infection. Besides, I am a person who has lived and continues to live a very healthy life and who, before all this happened, only got sick from minor case.
My partner had received a heart valve surgery and a bypass in 2016. The consequence of years of high blood pressure and an aneurysm, which was treated with medication until it was no longer possible!
Everything went well, he got better very quickly and the operation was forgotten relatively quickly.
He got a cold/flu in December 2017. At least that’s what the doctor and I thought because he had fever for up to 2 weeks. When he got a little better, we both assumed it was over and actually thought it was the flu. But in January 2018, he felt so bad that he talked about poisoning; that’s how he felt. The doctor gave him pills and sent him home again. It was quite cold at that time and the doctor had advised him not to stay outside in the cold.
In February he had a stroke so severe that he could no longer speak.
By chance I called and found out that he was behaving strangely. I could not understand him and thought he was in a dead zone; you could only understand half of it. Later I called again and it was the same. I was not sure of what was going on. To be safe I called the paramedics. I met him in front of the ambulance and saw him. Although the stroke was obvious, they took him away with suspicion of a stroke. It was assumed that he only had fever, although I told the paramedics that I knew him and that he was not usually like this. Also, the corner of his mouth was crooked. He said he only had fever and he was dehydrated.
When I arrived at the hospital, my suspicions were confirmed. He was finally transported to the stroke unit after a 6 hour stay.
No further action was taken there because of the stroke. After a head CT, 3 strokes were found, 2 smaller, somewhat older ones about 4-6 weeks and the 3rd was very large.
What the doctors could not control was the fever, which nobody could explain. After that, they began to make investigations and detected streptococcus in the blood. He had sepsis. After a few days they started the right treatment and after 9 days, they found an older spleen infarction.
The doctors could not explain the cause of the streptococcus and the resulting sepsis and blamed it on a possible lack of oral hygiene. After 2 weeks, he was transferred with suspected heart muscle inflammation and a possible leak in the heart valve. The doctors wanted to operate the valve.
Antibiotics were administered 3 times a day and countless blood samples were taken before the antibiotics and the dose to use were determined. From the 5th week on, he was discharged, after a heart involvement was ruled out and the inflammation values had subsided. A PET examination was performed in Bonn, which ruled out endocarditis.
I am writing all of this in such details because the blood samples taken 3 times a day as a result of this sepsis led to an anemia which I was not aware of at the beginning. I did not know whether my partner received blood preserves during the heart valve and bypass operation in 2016. Until I saw the PBM program on the dangers of blood preserves, I was not even aware that blood preserves were used in these operations.
Almost 5 months after his release, he suddenly had breathing difficulties. Perhaps I should mention that he hasn’t been able to be alone since the stroke, he was afraid to be alone. I tried to calm him down, but at first I also thought that the warm temperatures were a burden. To be on the safe side, he went to the hospital.
Examinations showed that he had water in his lungs. He was terribly afraid and was not really taken seriously by the doctors and nurses. Although it was proven that he had water in his lungs. Instead, I had been advised to get psychological help.
After 5 days, he was discharged with a referral and an appointment in 2 weeks for a catheter examination.
He couldn’t have lasted that long. His fear of dying was huge.
In my distress I wanted to bring him to the heart center, because he did not want to go to back to the hospital. Since I didn’t know if we would be accepted, I called first. I was recommended to take him to a place where they know the full course of his illness.
And I did so. By now I think that was the biggest mistake I could have made.
After some examinations, they said that the heart valve must be operated again. They did that already in April, but the results did not give a clear indication of damage to the heart valve or inflammation of the heart muscle.
He was given antibiotics again. My impression is that he was fine again under antibiotics. I also did not assume that the operation would be so early. I thought that the inflammation would heal first.
However, the doctors were not able to operate quickly enough. They waited a few days until the inflammation was no longer so high, but in my opinion the operation was much too early.
The doctors took advantage of his fear of dying and imposed another heart valve operation, a Re Op on the open heart. Despite the inflammation caused by the streptococcus and an anemia, which I know of, determined by the family doctor, he was operated on within 1 week after I drove him to the hospital.
Whether the anemia would be a problem or not during the operation was not clear to me as a layman until I saw the PBM YouTube video in 2014. Also, I didn’t know that the high inflammation values were an issue. Although I had a feeling that this could not be right, but I thought again and again, I am not a medical doctor. They should know better about what is right!
Right after the operation, which was “successful”, he was connected to dialysis. The kidney values were not completely good and he should stay in an artificial coma for one day, because of the fine work that is better done in a coma.
But that was not all. A second day was added. On the third day he collapsed. He got problems with his heart. He was implanted with the heart-lung machine.
The heart is too weak!!!!????
And they only noticed that now? A left-sided cardiac insufficiency was diagnosed. Leading to the operation of 08/2016: A heart valve and a bypass because of an aneurysm. Afterwards the pump volume improved and the heart failure was minimal.
He had water in his lungs again but the whole heart was too weak??? It was a real shock! How come they only found out about it 3 days after the operation?
I wanted to know why there was no other solution such as a donor heart (I could not think of any faster solution) instead of just a heart valve Re Op, when the heart is obviously too weak!
Answer of the doctor on duty: what is gone is gone! What kind of answer is that?
After another 3 days, he had to undergo emergency surgery. He had internal bleeding. They couldn’t explain why. They couldn’t localize the bleeding. It continued on a three-day cycle.
After the second operation, the chest was left open for more than two weeks. He was given a continuous supply of blood. As he received the bottles, they flowed out again. At least that’s what it seemed to me.
By chance I learned that he was receiving type O+ blood. I asked him what blood type he had. I did not know that at that time. The nurse said O –
We have nothing else, but he got the good stuff, so she pushed it in. I looked at her, but I couldn’t do anything about it. In my ignorance, I asked if there was anything we had to consider……. Yes, she said, regular tests for antibodies…. I didn’t mean any harm. I’m not part of a medical staff. I just thought for now, it’s good we talked.
I had a hunch something was wrong but as a layman I thought again, they probably know what they’re doing!
He was bleeding like a pig from the nose, mouth, chest. The night before he was sucked out again. They’d just finished when I got there. That’s when I found out he’d had another operation.
It smelled funny and I thought he was in his own blood. I asked the nurse to give me something to take in, I thought he shouldn’t be allowed to get bedsores. Reluctantly he took something and wiped it away and told me he had preserved. When I understood that it was not blood but his own stool, I asked him why he was not cleaned! I was upset. The orderly just said he wouldn’t know. It would be uncomfortable for you; you have to clean it up. I was more upset about what he said. It was not possible. He had so many wounds on his body and an open chest and he gets answers like that? After that I had to leave the room. Some time passed. Then I was allowed back in. The nurse told me that he had been lying in his own excrement all the way up to his neck. You have to imagine that. With these wounds, a danger of infection without equal and he lay in his own excrement.
I stayed with him. He began to bleed, and it became gradually more and more. He bled massively from the open chest.
They had put some drains, but the bleeding did not stop. Only when they had got the bleeding under control did I drive home at 5 am.
I hardly slept and the phone went off early. I was supposed to come by again, they had to talk to me.
When I arrived, they told me that the heart-lung machine would be removed. They didn’t ask me.
I didn’t want to, because the heart surgeon told me, cold as ice and with a shrug of the shoulders, either he would make it, or he would not!
I tried to argue, but I didn’t know what to say. I didn’t want to take the risk that removing the ECMO would end his life. But the heart surgeon told me that my partner had received the highest possible therapy that any human being can receive. More would not be possible. That’s when the mother came in. He turned to her and briefly explained what they were doing. Then he went away.
What does that mean? He would have received 120 units of blood?? The highest possible therapy a person can receive. I can’t believe that. Restless and afraid, I waited. Few hours passed, then I was allowed to see him.
After the PBM Youtube video from 2014, I could think about it. Based on 5 liters of blood, he had 24 times the blood “exchanged ” if I can interpret it that way. And that wasn’t even his real blood type. O- is the only blood type that can’t handle another blood type.
By now I also understand why the immune system was completely overstrained and why he had so many complications.
After the removal of the heart-lung machine, I was naturally very afraid that he would not survive, that he would die. It was expected by the nurses. But he fought. It took almost another week for the chest to close.
This also went well although I was afraid that it would not work because of all the water in the body. The dialysis was discontinued. Anesthesia (Propofol) was discontinued and he started to convulse.
After 3 days, he received a low dose of propofol again, 2.5 ml or mg. The reason was that he became calmer. He was intubated and he slowly became more awake… and because of the seizures he was given it for another 3 days. It took 6 days before he had a neurological examination.
The head CT revealed several small strokes. They wouldn’t be that old, but they’d be too old to solve.
That’s probably why he’s seizing. They can’t say for sure, nor what the consequences of these strokes are.
They injected him with an anti-seizure drug without knowing for sure if the seizures were the cause of the strokes. I was angry, and I asked how this could have happened.
The doctor on duty only spoke about the tracheotomy. And I didn’t even care. I wanted to know why he had these strokes.
She answered me rather unkindly: He has been told that this can happen.
An answer that made me extremely angry, but which I could not do anything about.
At least I wanted to know what he’s cramping for! You can’t just inject him with antispasmodics when you don’t know what he’s cramping for!
In order to find out exactly, you have to take the measurement during a seizure, I was told. But the neurologist had no time. He would be alone…? No time?
The seizures subsided and the light dose of Propofol was stopped.
And he wasn’t seizing at all anymore.
I looked it up afterwards because I wanted to know whether propofol is detectable post-mortem, which can trigger a side effect of propofol, breathing difficulties and seizures. They made me believe that the seizures had something to do with the small strokes he had during the artificial coma (strokes caused by the blood preserves). And the seizures stopped.
Conclusion for me now: the seizures were a side effect of Propofol. In retrospect, it means that the chief physician made a wrong decision because he told me they do not know how he wakes up and what damage was caused by the small strokes in the cerebellum. They suspected that the seizures were caused by the small strokes.
He developed a fever. He would have mushrooms that they couldn’t control… and looked away from the tracheotomy for now.
He was given different antibiotics. Those didn’t work, according to the doctors. They’d have their guidelines, they have to follow them, and if those don’t work, it’s over. That can’t be it, I thought. I begged, please ask in other clinics, there are special clinics that only deal with viruses and bacteria. I asked them if they had an idea, or to move him somewhere else if they don’t want to do anything for him anymore. But they rejected everything.
A friend of mine had a forensic examination. The lawyer told me that my friend had died of pneumonia. I was told that he had fungus that they couldn’t control. Maybe he had both, or maybe he just had pneumonia. Maybe he got the wrong antibiotics? I don’t know.
Under dialysis it was fine. The fever was constant, so normal. An orderly once told me that dialysis can be used to cool or warm the blood. So I thought, why not put him back on dialysis? That was good. But they wouldn’t leave it on. They said the blood would clump together, that’s why. I said it was adjustable.
But they gave up on him. They wouldn’t treat him anymore.
I suspect the reason is that I turned to another clinic to transfer my partner, because I felt that he was not receiving the right treatment.
Strangely enough, the decision to stop the therapy was made on request of the chief physician of the clinic where I asked for a transfer, together with the chief physician of the clinic where he was operated on.
When the dialysis was stopped, the fever rose to 40.9, but sank to 40.1 in the course of the day. But no one was interested anymore.
Although I supported him and did not agree to a therapy interruption, he received further medication for 3 days and then the therapy was terminated by the clinic.
Without medication he had no chances. He had fever, he could not get any supporting medication, no more food and drink.
I looked at this for one day. Then I started having doubts about my decision. His breathing was sluggish, his blood pressure dropped massively, 40.1° C fever. No one wanted to help him. They weren’t ready to transfer him, or ask for other opinions, or do anything for him. The “generous” offer to have him protected was then accepted. This so-called “protection” resulted in the immediate death of my partner. Again, they wanted me to know that his time had come. I just wanted him to get some sleep and not suffer agony under these circumstances until his death as predicted by the doctors.
He had just turned 54.
Unfortunately, he was also considered in here too late: The dying process is initiated when no more food is given. At least here in Germany. Also, the life-supporting measures are slowly shut down. That means that the respiration has also been shut down. I did not know that at the time. I assumed that he was breathing badly on his own. In the meantime, however, I suspect I was led to believe that he was breathing poorly.
After their documentation about the risks of blood preserves I also understand why he had so many internal bleedings and complications. All the information was missing.
Since I contacted the public prosecutor’s office on the recommendation of a friend, his body was examined by forensic medicine.
They are not allowed to give me the results, but I was told so much that my partner had died of a heart that was greatly enlarged beyond the normal size and of pneumonia. He would also have had a lot of damage to his organs.
There was never any mention of pneumonia, except that it had invaded because of the amount of water and blood and had bruises.
I wonder why a heart valve re surgery was performed when the heart was so enlarged. Now I also understand his behavior before and his fear! Another solution would have been appropriate and lifesaving for him!
And since he was a risk patient, a recommendation in a cardiac center after PBM surgery would have been lifesaving.
My question is: Has the Ministry of Health taken action on the issue of PBM and education about it, or have they expressed themselves in any way?
They should receive a complaint for inaction, because according to your studies, 125,000 people die every year, including my partner, and that’s only because nobody has informed us that there is another way.
As described above, my partner had had all the problems to receive blood supply, as mentioned in the 2014 article.
I think it is very, very brave that you don’t let the critics get you down and don’t let yourselves be silenced, because that’s exactly what is done with the relatives.
They are told that the patient’s organs are failing and have no chance. They have been informed about the consequences of the operation. No one questions why the organs are failing! They are not told why the organs are failing.
When I saw your contribution, everything was clear to me. Unfortunately I saw it by chance on TV and my suspicion that my partner was not treated properly was confirmed for me. That makes me so angry! Only unfortunately too late for him.
I do not understand at all why the Ministry of Health does not take action? Why does the policy not make sure that at least this issue is cleared up!
It should be left to the patent holder to decide whether they go to a clinic that saves blood or one that doesn’t care. Instead of enforcing a compulsory vaccination against measles with all possible force, where only an estimated 400 deaths are known, instead of 125 000. Strangely enough, that is also possible!
If we had been enlightened, my partner would’ve still been alive. I am convinced of that!
And nobody supports my assumption. Nobody agrees with me. I am fighting on a lost cause, alone and am looking stupid from all sides.
I cannot even prove that the second operation should not have been performed in this form. I am not a doctor, but even in my layman’s opinion, I have come to the conclusion that my partner would have needed a different solution.
My son Adam had a heart of gold and a close bond with God. He was 36 years old and had suffered so much in the last 4 years. It all started when he cut off his right big toe saving a puppy from going under a riding lawn mower. He had severe pain for years after that. Then 2 years later he contracted double pneumonia and nearly died. (Sepsis and Pneumonia) We had to carry him down the stairs and at 400 pounds, it took 4 of us but we did it with love.
He pulled through from that and half a year later he contracted necrotizing fasciitis in the crease of his right leg. (Sepsis and Necrotizing Fasciitis) Again he nearly died and had major surgery which took a year and a half to recover from, during which time the hospital messed up his PICC line and sent him home with a DVT, and again we had to airlift him to the hospital to save his life. He recovered from all that and was so happy to be finally healed. Then he started having groin pain and we took him to the local hospital where they wouldn’t tell us anything. They rushed him to a larger hospital where they pumped him on a ventilator and massive antibiotics. They took him to a separate room when my wife left for a moment to call home. When she came back he was acting very strange and we found out that they told him they couldn’t do anything more for him and that he was dying. He told my wife he wanted to die at home.
As we were bringing him home, he was talking out of his head one minute then ok the next. We still didn’t know he had sepsis. Shortly after getting home, he lost use of his legs. We made him a bed on the couch and I stayed up with him all night till 8 pm. My wife came and checked on him at 8:15 pm and prayed for him. She went to the bathroom and I fell asleep as he was resting peacefully finally. Then I heard my wife scream his name and said he was dead. I jumped up and tried CPR to no avail. When the ambulance came they told us he died of sepsis, which we didn’t even know he had! He was a beautiful human being who didn’t deserve what happened to him. He lost his baby brother Daniel in a car accident 5 years prior and he kept our family together. We miss them both so very much! I HATE SEPSIS!
My life changed forever on 5th November 2008 when my baby son Joshua died. Joshua was born just 9 days earlier – a perfect beautiful baby boy. Shortly after his birth, my wife collapsed with sepsis and was quickly given fluids and antibiotics. Over the next few hours, my wife recovered. We were both concerned for Joshua, but when we asked the midwives whether he might be at any risk, we were simply reassured that he was ‘absolutely fine’. We were told that staff would keep a very close eye on him and that we shouldn’t worry.
Over the next 24 hours, Joshua in fact had many signs of developing sepsis – He was lethargic, reluctant to feed, breathing quickly and heavily and his temperature was low and fluctuating, prompting staff to put him repeatedly into some form of heated cot. My wife and I raised concerns, but each time we did we were reassured that Joshua was fine.
The next day, in the early morning, my wife found Joshua collapsed in his cot. He was blue and struggling to breath. He was rushed to the special care baby unit and put on a ventilator. Initially we were told that he may have collapsed due to heart defect, but it was soon established that he had overwhelming of sepsis – caused by the same infection that led to my wife’s collapse 24 hours earlier.
From this point onwards, Joshua fought for his life in 2 specialist hospitals, which provided the very best care possible. However, the damage the infection caused to his lungs was simply too great and Joshua passed away as a consequence of uncontrollable bleeding in his left lung.
In the weeks and months that followed, we pushed the hospital where Joshua was born for answers as to what happen and why. We wanted to know why Joshua’s hadn’t been reviewed by a pediatrician earlier and why he hadn’t been given antibiotics after his birth.
Sadly, rather than responding to what happened openly and honestly, the trust and staff involved in Joshua’s care acted to conceal the truth. Crucial records of Joshua’s observations were ‘lost’. Subsequent investigations carried out by the hospital claimed that Joshua’s observations were all within a ‘normal’ range and that even if he had been given antibiotics earlier, there was no way of knowing whether or not this would have altered the outcome for him.
It took many years to eventually uncover the full truth about why Joshua died. In March 2015, an independent investigation into maternity services at the trust was published. This report found that a ‘lethal mix’ of failures had led to the preventable deaths of 11 babies and 1 mother. Joshua’s death was entirely avoidable and was part of a much wider pattern of systemic failures that had been ongoing for years before he died.
The report made a number of significant recommendations for change and led to a new national drive in England to reduce avoidable harm and deaths in maternity services by 50% by 2025. The report also led to the establishment of a new national body that now investigates unexpected outcomes in maternity services like Joshua’s death – with a focus on learning to prevent future harm rather than individual blame.
Nothing can ever change what happened to Joshua, but I hope that part of his legacy will have been helping prevent other families going through the heartache and grief we experienced.
It all started in the fall of 2017. Pat, though she was not a fitness freak, had always been an avid aerobic exerciser. She practically wore out three stationary exercise bicycles in her 30’s and 40’s. Later, she became quite the walker. When the Fitbit craze was introduced, she needed no coaxing. She was all over it and soon became nearly obsessed with the famous 10,000 steps focus.
In early and mid-2017, Pat began to experience increasing difficulty in completing her neighborhood walks. At first, she described it as “running out of breath”, but later realized it wasn’t breath, but rather her energy that was depleting. She couldn’t walk further than 50 yards without stopping. She couldn’t endure any kind of incline. That’s what drove her to seek medical evaluation.
After voluminous testing, she was diagnosed with possible cardiac blockage of some sort. The cardiologist performed a scope, but no cardiac blockage was found. What was discovered was a femoral arterial blockage. Subsequent surgery removed that blockage, and as was predicted, she felt vastly improved, even before she recovered from the effects of the surgery itself. In short, the next six months or so were perhaps the most healthy-feeling six months of her adult life.
Unfortunately, all the testing uncovered another cardiac issue. She was diagnosed with Cardio Myopathy with mild Systolic Heart Failure. Her cardiac electrophysiologist said she needed a defibrillator implant. At first, she balked, stating that she didn’t feel ill. In fact, she hadn’t felt better in decades. However, after consulting with her cardiologist and primary care physician, who both agreed, she caved and reluctantly went through with the implant surgery on March 12, 2018.
The surgery, in and of itself, reportedly went well. The wound apparently healed well and the implant reportedly worked fine, though it never needed to intervene. There were no apparent visible signs of infection. However, the tenderness in the area of the surgical wound never abated. It should also be noted here that she was not given any special cleanser to use prior to her surgery, as is standard pre-op protocol.
Pat continuously complained about the ongoing tenderness and the lack of improvement thereof. She made phone calls and spoke directly to whomever would listen … the surgeon’s office nursing staff, the implant technician and the surgeon himself during all of her post-surgical office examinations. She and her husband even dropped in, unannounced, to the surgeon’s office and spoke in the lobby with his NP/PA. In every case, Pat was advised that there was nothing to worry about … all patients heal differently. We later found there to be no records, of any kind, for any of the phone calls or the visit with the NP/PA.
On the night of July 18, 2018, Pat developed an extraordinary and, at times, disabling pain in her spine. Having been treated for years for chronic osteoarthritis and two spinal surgeries, she assumed the pain was just another spinal bump in the road. She called her primary care physician who ordered an X-ray, which found nothing.
The pain worsened over the next few days and she developed chills. During a late-night visit to the ER on July 22, 2018, Pat explained to the ER nurse that she had a defibrillator implant. The ER nurse could not find this in her electronic health record. Pat was frustrated that the nurse could not find this in her record, when the surgery itself occurred just four months earlier in that very same hospital. She was admitted to the hospital overnight and released the next day, only to be called that evening to be advised that the cultures had come back with positive results of a staph infection. She was re-admitted the next morning, July 24, to begin what turned out to be several days and nights of testing along with oral and IV antibiotics and pain killers.
The conclusive results of the tests were the existence of massive, systemic, staph and other infections. In addition to them being systemic, the infections had found homes in her surgical implant cavity and on her spine.
That same week, on July 26, surgery was performed to remove the implant. The recovery team had trouble reviving Pat from the anesthetic. It took a lot longer than normal. Once she was returned to her room, she experienced some sort of delirium. The delirium eventually resided. Thereafter, the recovery from the surgery seemed to have gone well.
When the implant was removed, it was noted that not only was the implant loaded with infectious material, but the wire leads that went to her heart were loaded as well. When removed, infectious debris fell into her heart, and later found to have made their way to her lungs.
Over the next week, Pat experienced another delirium episode and she also begin retaining water and there was noticeable swelling in her ankles. On August 2, as she was walking around the IMCU floor, she suffered some sort of pulmonary event. She looked like a woman who was drowning. Dozens of medical personnel were quickly dispatched to her bedside, including a pulmonologist from the ICU. Her breathing was somewhat normalized. The ICU physician ordered that she be transferred to the ICU immediately.
And then it began … sepsis, more delirium and pulmonary trauma, cardiac issues, kidney failure, three admittances to the ICU with two involving intubation … all accompanied by a consistent, downward spiral of her strength, stamina, appetite and cognition. During a family meeting in her ICU room on August 22, where palliative care, cardiology and pulmonology teams were present, Pat was adamant that she was furious this had happened to her. She told the team in no uncertain terms, “I do not want to die”. She told the medical team to “do whatever it takes”. They agreed that as long as she was willing to fight, they’d keep fighting with her. It should be noted that this was the last time the family had spoken to the cardiology team.
Finally, after nearly seven weeks, Pat’s infections were all arrested. Her heart and lung capacities were diminished, but stable. The antibiotics were stopped and eventually, all other tubes were removed. Kidney dialysis was ongoing. Though clearly weak and utterly exhausted, she looked like a patient ready to be on the mend.
On Thursday of Pat’s sixth week in the hospital, the nephrologist paid her a visit. He approached the foot of her bed and told Pat and her family that she was in “miracle territory.” The next day he explained to Pat’s daughter that on paper, she should not still be alive. He went as far as to tell her “she is not so sick that she’s going to die in this hospital.” She was scheduled to start in-patient rehab the following week, with the goal of her being home by Halloween to accompany her grandchildren trick-or-treating for Halloween.
Some 48 hours later, just two days prior to going to rehab, Pat died peacefully in her sleep of heart failure.
We all agree, Pat’s inspirational fight to beat the infections and associated organ and system failures, exhausted her to the point she had nothing left. She won the battle, but lost the war.
What plagues us now, are the unanswered questions:
Pat was a fighter her entire life. She fought this illness with everything she had, and she never lost her will to live. Her family honors her memory every day to keep her legacy alive, especially for her young grandchildren.
My name is Maureen Robbins and I have a serious and disconcerting medical experience to share with you.
It is an unsettling story of the tragic and untimely loss of my 84-year-old father, Joseph Karbelk, who was denied his rights as a patient, inappropriately restrained and incorrectly treated with chemical sedation in an emergency room and then, because of these events, failed to recover. A mere six weeks passed from the date of the hospital incident to his preventable death, which was accelerated by the carelessness actions of hospital staff.
And that is the reason I am reaching out to you today: To advocate for more and improved hospital patient rights in addition to highlighting the need for thorough legal knowledge and action concerning power of attorney for Black Box drugs. Choosing appropriate POAs and family advocates — and ensuring that all family members have knowledge and access to current and relevant information – is imperative in a hospital setting.
What happened to my father — and our family — should never happen to anyone else. With that in mind, I am committed to disseminating knowledge about patient and family rights, what can transpire in a hospital emergency room and what should be done — actively and proactively — by patients, advocates, family members and doctors to ensure that this kind of emergency room misfeasance is eliminated.
My particular story focuses on the dangers of medical hubris and carelessness as it relates to chemical sedation, drug interactions, lack of communication and a careless disregard for patients’ rights and the enforcement of power of attorney.
In the autumn of 2017, my father resided with my mother in an independent living facility in Chantilly, Virginia. Although he had been diagnosed with vascular dementia, his dementia was controlled, and he was maintaining a consistent state of health. He was doing well — so well, in fact that he accompanied me in September of 2017 on a trip to Blacksburg, Va., to see my daughter at college.
One month later, on the evening of October 15, 2017 — after my father was prescribed a new medication (Seroquel), experienced a fall, then exhibited an altered mental status and behavioral changes — my sister took my father to the emergency center in Tysons Corner, Virginia.
At this emergency room, although lab work was performed, and a CT scan administered, it was determined that further tests were needed. Arrangements were made for hospitalization in Arlington, Virginia.
Before transport to the hospital, my father was given the drugs Ativan and Haldol, a drug that interacts negatively for dementia patients on Seroquel. He was also restrained against his will and without consent from the family. NEVER, throughout this ordeal, were my mother or I given the opportunity to approve or deny the treatment based on our respective powers of attorney. My sister, who does not possess power of attorney, was allowed to make decisions and support erroneous doctors’ assumptions without any attempt to contact the legal POA’s – even though my father’s power of attorney documents had been on record in the hospital system for over two years.
In addition to this lack of legal clarity and enforcement, another set of circumstances unfolded simultaneously concerning over-medication. This is where the deadly spiral of chemical sedation, and degeneration, begins. Although drugs are often needed for patients experiencing symptoms of dementia, as my father was, it is CRUCIAL for emergency room physicians and consulting doctors to inquire about, and then be more fully informed concerning the specific medications that patients are taking as they enter an emergency room and/or hospital. Otherwise, serious black-box drugs – antipsychotics known for their often-lethal consequences for interaction – can be administered without regard to other drugs in a patient’s system.
In my father’s case, he was given more doses of the very drug (Seroquel) that he was already having an adverse reaction to. This could have been prevented. All of his prescriptions were filled at the first facility –- and it is important to note that the first emergency room he was taken to was also at this same facility. Neither that hospital nor the second one he was transferred to provided a prescription list. It was this lack of background inquiry and non-communication concerning drugs and their administration and interactions that are to blame for his quick deterioration and ultimate death.
Upon arrival at the second emergency room, additional medication (more Seroquel) was continued although the ER physicians noted that my father was awake, alert and resting comfortably and calmly on a stretcher -– all indications that he needed nothing more except tests and observation. My father’s personal neurologist was never called. The ER psychiatrist on duty was called and was going to come see my father. That never happened. He consulted by phone with ER staff, recommended a chemical restraint cocktail PRN– that included even more Seroquel — and additional black box drugs throughout the evening. Within a short time, my father was mumbling incoherently and unable to follow commands.
Especially unsettling was the inaccurate assertion by the on-call ER psychiatrist. He stated to the ER staff that he was “familiar” with my father and his case. That statement was, and is, false. For the record, this doctor had no history with my father, never physically saw my father in the emergency department nor did he EVER access a list of my father’s current medications. He did not actually visit my father until the following evening when he requested that neurology be consulted.
On October 17, 2017, two days later, a neurology consult was held to discuss the state of my father’s worsening dementia; the attending physician noted that my father has been heavily sedated for days and had not regained his fully alert cognitive state. The doctor stated that my father was suffering from toxic encephalopathy probably related to the medications he had been receiving since hospitalizations — black-box medications, including ZyPREXA, Seroquel and Haldon — that were continued despite my father’s ongoing unresponsiveness.
Due to my father’s now-advanced dementia and accompanying poor prognosis for recovery, the family decided to stop both sedating and psychotropic medications and to adopt a palliative approach at home.
That evening at home, after my father was discharged from the hospital, he became exceedingly drowsy, feverish and gasped for air. An ambulance was called, and he was admitted to the emergency room in Fairfax, Virginia., for aspiration pneumonia, sepsis, and metabolic encephalopathy. Again, the on-call physician noted that my father’s symptoms were consistent with neuroleptic malignant syndrome (NMS), a life-threatening reaction to antipsychotic drugs characterized by fever, an altered mental state, muscle rigidity, and autonomic dysfunction –- due to the previous administration and dangerous interaction drugs.
Later that evening, my father was transferred to a hospital in Reston, Va., where his mental state fluctuated, and he stopped eating despite attempts at nutritional support.
On October 24, 2017, my father was transferred to the inpatient hospice facility. My father remained in hospice care for 15 days until he died on November 5, 2017.
It is clear my father was denied his rights at the hospital where he was discharged and, as a result, was negatively affected by inappropriate chemical sedation. My father represents the very patients most in need of a Bill of Rights. Patients who are unable to make decisions for themselves and rely, instead, on the legally responsible parties named as their decision-makers to ensure their safety and best interests are considered.
My father’s experience is far too common in emergency rooms across the country. His life was worth more than a series of careless missteps and avoidable mistakes. The use of antipsychotic drugs to control people without their knowledge or against their will violates international human rights. “Under international rights law, in the absence of free and informed consent, a nonemergency medical intervention that is not necessary to address a non-life-threatening condition is forced treatment”
Knowledge and pro-active communication are the tools that all of us, as family members and advocates, must gain and retain as we navigate the unforeseen dangers of America’s medical facilities. It is critical that we are all prepared to help safeguard our loved one’s care at hospital bedside, when they need us most.
The number of older Americans is expected to double by 2060. The number of Americans with Alzheimer’s disease, the most common form of dementia, is expected to increase from 5 million today to 15 million in 2050. The system of long-term care services and supports will have to meet the needs and respect the rights of this growing population in coming years.
Together we can create awareness regarding the use of antipsychotic Black Box drugs for our loved ones. My goal is to protect the American’s impacted by this disease who no longer can protect themselves.
Just and Restorative Cultures – Healing, not Harm.
Sam was my little sparkle. Life-affirming, cheeky, and bursting with life, he liked music, mud, pebbles and pine cones. He was funny and affectionate. He thought baby cows were ‘cute’ and enjoyed balancing ‘imaginary cow-pats’ on my head.
In the run up to Christmas 2010. Sam and I were heavy with cold. Britain was frozen. Sam’s energy rose and fell with his temperature on the peaks and troughs of Ibuprofen. He was excited by the falling snow, but even more so by Christmas. He thought the Christmas tree — still wrapped in netting on the floor — was ‘so beautiful’.
On the 21st of December we ventured out to see a GP, ice cold air making us cough and wretch to the point of feeling sick and sore. Had we got flu? “Maybe… but it’s just a virus” the doctor reassured us. So we went home to warm up and wait it out.
Sam and I spent the next day, the 22nd, curled up under a duvet on our sofa. Sam’s temperature had come down for the first time in a week but — unusually — he was not perking up with medication. Worried, Sue called the GPs’. We waited: first for a call-back, then an appointment. Late in the afternoon we bundled up and braved the cold again and Sam saw his second GP in two days. On the way home Sue was still anxious. The GP had seemed “in two minds”, she told me, before determining “the best place for Sam was home”. I watched Sam in the rear-view mirror. Small and exhausted. I knew how he felt. “We need to trust the doctors”, I said, “they are the experts”.
Soon after arriving home, Sam was sick. Sue sought more advice. Waiting for another call-back, I cuddled Sam beside his bed. He was sick again, but this time it was black. An out-of-hours service sent us to our local hospital. Yet more waiting. Then sudden urgency. An oxygen-mask. An ambulance. Blue lights. A&E. Drips. Blood tests. X-rays. Prescriptions written. Transfer to a High Dependency Unit. Reassurances. Shock. A circle of medics — white and blue, through dull green curtains. A kind nurse. A calm consultant. Talk of fighting as hard as any boy could. The beeping of Sam’s beating heart. And then a searing and suffocating silence. Circumstances beyond comprehension. 5AM. The 23rd. Weakened by flu. Overwhelmed by sepsis. A perfect life cut short. Aged just 3. Sam was dead.
In the UK the National Health Service (NHS) is everyone’s safety-net: safe hands if needed. So trusting ‘healthcare’ — despite anxiety for Sam — felt natural. Our trust was never blind, but always respectful, asking questions when necessary: believing the NHS existed for the health and wellbeing of patients.
But the speed and unexpectedness of Sam’s death changed everything. We no longer felt safe… and nothing made sense any more.
With broken-hearts, the need for safety and sense-making generated questions. Questions which — if safety was health-care’s priority — its practitioners would encourage and answer quickly and comprehensively.
Frightened, but in good faith, we waited. As weeks became months however, my ability to trust was systematically dismantled.
I started chasing responses. Unwilling to see through my eyes, they expected me to look through theirs. Assurances were free-flowing but — lacking evidence — meant nothing.
I was asked to be patient; to trust the professionals; trust the process; trust the system; to understand that no one goes to work to do a bad job.
Investigations were promised but dragged on interminably; excluding us; siloed; missing chunks of Sam’s journey; devoid of objectivity and, conveniently, dismissing our concerns. We were told that Sam died of something “incredibly rare” and “hard to spot or treat”; that “nothing could have been done to save him”; that his death was ‘explained’ and ‘unlucky’ but ‘unavoidable’.
But sepsis isn’t rare, and — with timely recognition — can be treated.
Independent investigations — spanning 5 bleak years — determined that Sam’s death was, in fact, avoidable. Amidst a ‘catalogue of errors’ the seriousness of Sam’s deteriorating clinical picture was repeatedly missed and misunderstood; prescribed antibiotics were not administered for hours… and so Sam died.
Lacking the courage and competence to join these dots together, the NHS’s cultural reflex was to protect itself, deflect scrutiny and bury the truth. Hierarchical power was misused. Minds closed to the possibility of improved safety. Perhaps they assumed I would give up or break down? Irrespective, it was a flagrant betrayal of the NHS’s constitutional claim to work ‘at the limits of science – bringing the highest level of human knowledge and skill to save lives and improve health’.
The ineptitude of healthcare’s co-ordinated response exposed cultures shaped by fear, blame and shame, but not compassion, trust or safety — for patients or staff. It was unjust: a festering indictment of defective leadership, governance and accountability.
Real safety depends upon timely feedback, learning how to identify and prevent avoidable harm, and sharing insight. But that requires psychological safety, which in turn depends upon trust. Both are characteristics of ‘just cultures’… but not of ‘cultures of fear’. And both are jeopardised by fear-fuelled and adversarial processes like complaints and litigation.
To be trustworthy (for patients and staff) health services need wiser leadership, better governance and radically different regulation.
Trust and safety are two sides of the same coin. Both have to be nurtured. If doubt undermines one, the other suffers too. Whether they flourish or wither is determined by actions and behaviours.
Pledges to ‘Do No Harm’ are not enough. And ‘Lessons Learnt’ mean nothing unless translated into safer care. If ‘Duties of Care’ mean anything, health services must go further, fast, stopping the cycle of avoidable-harm; banishing cultures of fear, blame, shame and scape-goating; punishing bullying and cover-ups. Safety depends on all of this… and more. Investigate for safety; encourage curiosity; welcome challenge; embrace different perspectives. Strive for learning and improvement. Reward transparency and innovation. Flatten hierarchies. Be fair and consistent. Offer kindness and respect to everyone.
Do all of this… and ‘just and restorative cultures’ will emerge and flourish. Cultural reflexes then will be to prioritise establishing who’s hurt, what they need, and who will help — ensuring that it happens.
Healing — instead of harm — depends on action. That’s what we expected for Sam. He deserved no less. Nor does anyone else. We have the know-how. We need the action. Lives — like Sam’s — depend upon it.
My name is Alyssa, and this is my 4th grade picture; I’m nine. This is also where time stopped for me. I won’t grow any older. I won’t graduate from High School, attend college, get married, have a family or career. The impact I have on the world is from a frozen state. I have a story to share, but no longer the voice to present it.
It was a Monday afternoon and I found out I had cancer, Acute Lymphoblastic Leukemia (ALL). By that evening, I was in the hospital in the bone marrow transplant unit. I was seen by a second-year resident who would only see me one time because of a rotation change. She attached a label to me that would impact my care and cause my providers to anchor in a diagnosis that wasn’t correct.
Most of the care I received in the hospital was great, but you know how quickly things can change. The last sixteen hours of my life were excruciating. I acquired a c. diff infection, was a classic case of failure to rescue, became septic and had typhlitis. All the while, my care team was anchored in the label attached to me on my first day in the hospital. It is now Thursday, ten days later, and I am dead. I did not die because of my leukemia. I died because of multiple medical errors.
I don’t want to focus on my clinical care; but rather, what happened after I died. There was no transparency, no disclosure, no discussion about what went wrong in my care. My parents walked into the hospital with me and returned home without me.
My Mom has tried to explain to me that transparency is like cellophane what you see on one side you should be able to see on the other. This didn’t happen for me. It took the organization where I died three years, seven months and twenty-eight days for them to have the first honest conversation regarding my death. This is no way to learn and make changes in the system to protect others. This was no way to treat my family.
I share my story now to make healthcare safer for others, train future providers, and make sure honest and transparent conversations are held after medical harm. You see three years, seven months and twenty-eight days was the old way of transparency. The new model for transparency is cellophane.
Alyssa Rose Hemmelgarn
My father felt something while fishing back in April 2017. He broke several vertebrates in his neck. After a 12 hour surgery, a stroke, and loss of moment on his left side he survived the surgery. During his last week in the hospital, he received a new feeding tube. With many ups and downs my father then was transferred to a rehab/nursing home facility. Within two days of being at the rehab facility his feeding tube became blocked so the doctor (an ER/internal medicine physician) replaced the feeding tube with a piece from a Foley Cather as a temporary fix until they could get him to the hospital to put a “real” feeding tube in on Friday (THREE DAYS LATER!). When they put the temporary tube in my father’s stomach, it slipped away and the tube was placed into his abdominal cavity. For 9-12 hours he was fed and given meds into the port which was pouring into his abdomen. He became unresponsive and his blood sugar was 17 when they called the ambulance to get him to the hospital (WHICH WAS ACROSS THE STREET). The ER doctor discovered his kidneys were shutting down and they realized about the Foley tube placement and found four litters of pus in his abdomen. My father had become septic. He was in ICU where they worked to save him but he continued to grow sicker, his temperature spiking to 107 degrees. He survived but so much damage was caused and resulted in more strokes. We made the decision to take him off life support on May 16, 2017. My father died because a physician did a temporary fix to a NEWLY placed feeding tube that had not had time to heal and create a stoma. As soon as he pulled it to replace it the stomach lining fell away so there was no way the tube would have gone back into the stomach and there was NO x-ray done to check placement. Placement could not have been verified with the use of the Foley tube versus a real feeding tube. This was a huge mistake in their practice and it cost my father his life.
May 1, 2012 was the start of a week which would forever change our lives. Gabby was a vivacious, funny, and smart five-year-old girl who loved cupcakes, animals, and spending time with her family. She had the sense of humor of an adult, and was the most kind, caring, and loving child. Gabby was so happy to love and to be loved. She adored her pet Chihuahua Bella, and enjoyed hanging out with her sisters, Nina who was seven at the time, and Sophia whom was thirteen at the time. Her smile was contagious and could light up a room. She had a full, promising future ahead of her until an untreated infection, which should have been caught and treated, led to sepsis and septic shock, and ultimately took her life on May 11, 2012.
Gabby died from sepsis/shock due to untreated Rocky Mountain Spotted Fever, which comes from a tick bite. We never knew of a bite, were asked about bites, or saw any marks. Several doctors considered it during her illness at the first hospital, which was negligent in her care, but not one of them ever presumptively treated with the correct antibiotic which would have treated the RMSF.
On May 1, 2012 Gabby awoke early in the morning with a fever of 102.5. We were concerned she may have an ear infection so she was taken to see her pediatrician. Her ears looked fine and the doctor thought she may have strep throat. She did a rapid swab on her and it was negative. The swab was also cultured in the lab a few days later and grew out negative. We took her home and assumed she just had a virus. Later that afternoon on May 1, she complained of a headache. Her fever continued through the day, and reached 102-104 throughout Wednesday May 3 and she was also having nausea, and eating and drinking less. On the late evening of Wednesday May 2, I put her to bed about 9:30 p.m., and went to check on her fever and give more medicine at roughly 11:00 p.m. Her fever when I took it was 105 degrees and she had broken out in a red spotted rash all over her body. The spots resembled the chicken pox, or what looked like raised mosquito bites to me. They were sparse, but did cover all parts of her body including her palms and soles. The rash seemed to lose its color and disappear when the fever would decrease a bit. We immediately visited our local ER upon the fever reaching 105 and the rash appearing.
The local ER gave more fever reducer and got her fever down, and the doctor who saw her came in very briefly, and looked down her throat noting it was red and swollen. He said she had tonsillitis and that the rash was from the fever. He administered a shot of injectable Rocephin into each one of her thighs, and prescribed her an oral antibiotic. She was discharged home during the early morning hours of May 3 at roughly 3:00 a.m. By 8:00 a.m. she was covered in even more rash all over her body. The rash now looked spotted, red, and flat, and I couldn’t get her to eat anything but small bites of ice cream, and had her taken small sips of water. She was now complaining of abdominal pain. She still had a high fever of now 103-104. I phoned her pediatrician and informed her of our local ER visit and her new symptoms and was told that she would see her in her office. Upon seeing Gabby she said we could stop the oral antibiotic because this was not tonsillitis, chicken pox, scarlet fever, or the measles, and that she thought it was an atypical Coxsackie virus (meaning she didn’t show the classic symptoms for it). Gabby never complained of a sore throat or had any classic Coxsackie blisters in her mouth/throat. The pediatrician stated that the fever could get up to 105, and that the fever reducer may not bring it down, but just to keep her comfortable. She stated that Gabby should be fever free by Saturday May, 5 or Sunday May, 6, and asked if I would call with a status update on Saturday May, 5. She never stated if she still had a fever Saturday that she wanted to definitely see her back or that it may be something more serious, just to check in.
I took her home and kept her on the couch to provide comfort measures. She was complaining that her legs now hurt, but I thought that may be due to the injections she received. The next day on Friday May 4, she spent the day on the couch and was tired, lethargic to me, and her fever remained high 103-104. She got up for a bit and moved around, and the rash still seemed to fade when the fever came down a bit, but the fever never went away. On Saturday May 5, she remained home in the morning with her older sister while my husband and I attended our seven-year-old daughter’s first communion. I briefly checked her over, and gave fever reducer before we left the house at 9:00 a.m., and returned home at 12:30 p.m. I didn’t get to check in with the pediatrician, as I knew their office had closed at noon, and my thinking at the time around 11:30 when I knew they would be closing soon, was that I felt she was no better, but not critically worse, and that given the pediatrician had told us she could be fever free by Saturday, maybe Sunday I considered she may tell us she would see us on Monday morning since we were still in the timeframe for which she believed she would have a fever.
Upon arriving home from the pediatrician we noted she was agitated, and noticed that she was off balance when she walked. I knew when I was ill that sometimes I would feel a bit dizzy and off balance. She rested on a cot while we did a quick celebration for our daughter, and was only taking sips of water at this point. I knew because she hadn’t been drinking much that she wasn’t going to be going to the bathroom much. No one had talked to us about lack of urination, or lack of balance, or that we should even watch for changes in her rash or what to look for as danger signs.
At 9:00 p.m. on Saturday May 5, I took her fever as it was time, and it was at 106. My husband rushed home from work and we phoned the patient advisory nurse telling her we were bringing her to the ER of the hospital in the next city over, which is a level 1 trauma hospital! We got admitted, were seen by the head of Pediatric Critical Care, who checked her over and looked down her throat. I stated the pediatrician thought Coxsackie virus, gave her history, and said she didn’t have any blisters in her mouth though? He said she actually had one petechiae on the roof of her mouth, and we asked about IV fluids because we were worried about dehydration. He stated that you only need one to two teaspoons of water every 20 minutes to stay hydrated and that we could have IV if we wanted though, that it would be quicker…we of course said yes, and he ordered blood work. Upon arriving at the ER she had fever, her BP had an ! next to it (on the low side), and she hadn’t urinated in 23 hours at this point! She also had a slightly elevated HR. He went off shift and passed us to another doctor. The next doctor didn’t come in for six hours, didn’t re-examine her, and said she just had to urinate and could go home. My husband took her to the restroom where she urinated very little, and it was amber in color. This was after a bag of fluids. We didn’t know this was a bad sign that it was still darker, and there was still little output.
We showed continued concern over her rash and fever….the doctor said “what do you want, it’s a virus, and it’s going to take time.” He stated that fevers could get all the way to 110! We knew that was ridiculous and didn’t listen to that, but then asked about her blood work. The doctor said it “was all good.” My husband asked a second and third time and asked about the urine. He said it was all fine! The nurse stated the doctor had a reputation for being very blasé, and went over fever and discharge info. Upon being discharged her fever was climbing at 103, and she was tired and appeared lethargic. She was carried in and out of ER…they never asked if she could walk.
Sunday May 6, she slept most of the day and her fever oddly came down to 99. My husband complained about the ER doctor and I said he had an awful bedside manner, but did say that her blood work was fine. We took that as the ultimate reassurance. She was very irritable and agitated. The next day, Monday May 7, I phoned the pediatrician at 12:30 p.m. to tell her she was no better. Three hours later the nurse called my husband back and said we could bring her in today or tomorrow and the doctor thought that her lack of balance was due to decreased eating and drinking. I said I had read more on Coxsackie virus and that I saw where bad cases could turn into encephalitis…she noted that she didn’t think it was encephalitis, but couldn’t be sure without seeing her, yet there seemed to be NO urgency on her part! My husband asked of his own will…what about her labs from the Saturday ER visit? Did you get a copy and see those? The nurse stated that the doctor was looking at them and then my husband heard the doctor say “oh my god, her labs were awful. Tell them to get to ER right away, or call 911.” We took her right to ER. The doctor who discharged on May 5 from ER didn’t look at the labs I believe or maybe just her WBC which was 4, and barely normal. I think he saw that and thought he didn’t need to look at the rest based on that! The ER doctor is claiming he switched two of her numbers around, and that’s how he didn’t note she was so sick….but what about the other 17 abnormal numbers, and the result at the top of the page of labs that said abnormal??? Gabby in her vitals and labs was showing SIRS and sepsis, and they sent her home. Without her labs, she was even showing the signs of SIRS/sepsis.
She was admitted Monday May, 7 a week after she got sick with fever, and was not given IV antibiotics for sepsis for 7 hours after admittance, even though her labs from two days prior were awful, and her labs taken after admitted were now even worse, and had decreased by half of Saturday’s numbers. Her BP dropped, she started something called “third spacing” they said, and she was moved to SICU and given an internal line. Her HR, RR, and BP were all out of whack and come to find out later the first hospital asked certain questions which we didn’t know at the time were related to tick bites, and they thought of tick borne illness in their differential, but not one of them treated her with the drug to treat it…Doxycycline. She had a spinal tap which looked ok, and a CT scan. We asked the night she was admitted if we should move her to Peoria..the children’s hospital. They stated they didn’t think they would do anything different at that time, but that she could get much sicker before better. They were not equipped, now we know, and should have known they weren’t equipped, and should have moved her.
The first hospital doctors never communicated the real seriousness of her condition to us, nor EVER mentioned sepsis to us. My husband overheard the doctor saying they thought Gabby was septic, and then he told me and then I asked the doctor. Even then there was NO urgency shown by the doctors or nurses. Tuesday May 8 shortly after midnight, in the morning hours of May 8, she became very unstable…even though she had been in what we now know was respiratory distress all day, and they wanted to intubate. We were kicked out, and it took them over an hour to intubate? We believe the doctor didn’t know what she was doing and may have over medicated her, as when we got back in she was puffy and swollen…something didn’t seem right? Gabby was then air flighted to another children’s hospital. They were wonderful, had a team of pediatric specialists, and asked the same questions, but knew their protocols and started her on Doxy for Rocky Mountain Spotted Fever, which they thought she could have. More importantly they had an ID doctor which the first hospital never bothered to consult with one despite knowing she had been wrongly discharged home from their ER, and had failing numbers when she finally got admitted back in. Gabby was put on ECMO, plasmapheresis, an oscillating ventilator, more antibiotics, and she was swollen and her lungs filled with fluid. They did an abdominal incision to release the abdominal fluid, and the kidneys started producing again. As a result of the untreated Rocky Mountain Spotted Fever, she then developed SIRS, sepsis and then shock. She also developed acquired Hemophagocytic lymphohistiocytosis (HLH) due to the sepsis, and ultimately she ended up with brain swelling which cut off flow to her brain….I was horrified when we were told she had no more brain function.
The first hospital sent her home with SIRS/sepsis in which she then lost almost two days of critical time in getting treatment and supportive measures. Her SIRS/sepsis was missed because the doctor didn’t properly look at labs and certain vital signs were ignored which I believe should have been red flags…red flags which I was not aware of at the time, but sadly now we know. Looking back we also now know that she had some blood blister type marks included in her rash when she visited the ER that night, but we didn’t notice them, but the doctor should have when examining her rash, and that is a life threatening sign now we know…why didn’t the doctor who was the head of Pediatric Critical Care note these?? We are still baffled at the incompetence that we now know what took place.
After Gabby died we learned that her pediatrician on day three of her illness, after we left her office, she dictated that she “didn’t think Gabby had Rocky Mountain Spotted Fever,” however she didn’t ask me about it, tell me about it, have her nurse phone me about it, nor did she get a history from me regarding tick exposure or possible exposure. She said it was impossible that she thought she had it, but admitted she didn’t know her facts in 2012 on it!?? She wasn’t treated for sepsis in a timely fashion once admitted at first hospital, and wasn’t intubated, nor had her airway protected like someone with sepsis should…her death was 100% preventable. The pediatrician also said she saw Gabby’s labs as of Monday morning, the day I finally called in at 12:30 p.m., but she felt “it was important to go on with her other patients and that she would come back to Gabby’s labs, and claimed she asked a nurse to call us in to be seen, but as of 12:30 p.m., NO ONE had phoned me! She never called the ER to say we were bringing her back, nor did she ever look in the computer, nor call to the hospital doctors to check on her status after Gabby was admitted! She only phoned Peoria after she saw that Gabby had been discharged/transferred from the first hospital, and was sent a summary and then went in to a panic about how she saw the doctor at the first hospital considered tick borne illness and that we needed to make sure we asked Peoria about Rocky Mountain Spotted Fever….they had already started her on it!
The negligence and mistakes started with the pediatrician on day three and continued to the ER doctor on Saturday, and the negligence now we know continued on until she was air lifted out! We shouldn’t be visiting a cemetery every day. Our surviving children have lost the parents they once knew, and have lost their innocence. The doctors and hospital (first one) have taken no accountability and no one wants to be honest we believe. Our child is gone forever…aren’t we owed some answers at least, some honesty!
One day I woke up with a pain in my stomach. At first I thought I had the stomach flu or ate something bad, but as the day went on the pain got worse and it became apparent it might be appendicitis. I took an Uber to the ER in the middle of the night; they did a CT scan and ultrasound, rule out appendicitis, and decided a cyst must have burst in my ovaries and sent me home with pain pills. A couple days later I was still in a lot of pain and was running out of pain pills. I went to the OBGYN, she sent me back to the ER. They did a blood test and an ultrasound. They told me I was healing and sent me home with stronger pain pills.
Ten days after the first day I went to the ER my parents were in town and noticed how sick I was. I couldn’t stand up straight, wouldn’t eat, and couldn’t sleep. I had lost color in my face and had lost a lot of weight. My mom brought me back to the OBGYN. She looked at my CT scan and noticed my ovaries looked fine, and told me this was not an OB problem. So, she sent me back to the ER. This time around it took a while to get a room. Once I was finally in a room, doctors came in one by one to listen to my story. Each time I felt more exhausted. My mom told me later, the doctor kept asking her if I “always looked like that” and that at one point they lifted my leg and I screamed in pain, but I have no memory of that. Eventually, they sent me in for CT scan and when they put the dye in my IV, I screamed in pain. The whole week I was in 10/10 pain, but this was 100/10. I didn’t know this pain was possible. Turns out my appendix had burst; they couldn’t see it in the scan.
Once I got back to my room, things went downhill. I began to have trouble breathing. It felt like the airway to my lungs was the width of a pin. My body felt weighted, I couldn’t move anything. I was burning hot. I tried to think of ways to say how I felt with as little words as possible because I couldn’t breathe. “Can’t breathe,” “face swollen,” “thirsty.” My mom assured me my face wasn’t swollen and I remember being so confused because it felt like I must look like one of those cartoons that have been stung by a million bees. At one point I saw my mom crying as she talked to a doctor. At that moment, I thought I was going to die. Then, they rushed me to the OR. According to my records, they did an “open appendectomy,” to wash out the infection in the peritoneal cavity (basically, all around the organs). After surgery, my surgeon told my mom it went well, but the bad news was I went into septic shock.
Every morning my blood was taken to check my white blood count and lactic acid and every few hours my vitals were checked. Doctors and residents would come in every morning to report on my WBC, check on my wound, and redress it. I was on broad-spectrum antibiotics and put on fluids to give me electrolytes and cleanse the infection from my body. I looked twice my size in a couple days. Not only was I weak from sepsis and sore from surgery, I was also incredibly uncomfortable from this huge change in body size. My hands and feet looked like they were going to pop. The swelling made it difficult for the nurses to take my blood every morning. So I was poked a lot. When they would take off the rubber band strip, my arm looked like a balloon animal. One day we lost my IV, it hurt so they took it out but I was so stuffed with fluids none of the nurses could find a vein to get another IV in me. I had to wait for a special guy with an ultrasound machine to find where my real arm was under all this fluid-arm. I think he said he had to go 1.5 inches deep to get to my vein. This set back my healing process because I wasn’t getting antibiotics for about half a day.
The sixth day in the hospital my white blood count spiked again. A CT scan showed I had a bunch of abscesses in my abdomen, which they said were probably from splashes when they cleaned my organs of the infection during surgery. They said my body should fight off the little ones but they wanted to get rid of the big one. The procedure involved me laying on my freshly cut tummy while a doctor put a needle through my right butt cheek into my pelvis region. The doctor sucked out the insides of the big abscess as I was moved in and out through an X-ray machine multiple times. The good part about this was I had an excellent nurse who monitored my pain the whole time and gave me a new IV, called a midline, which lasted the rest of my hospital stay.
I spent 2 or 3 nights in the ICU and 14 days total in the hospital. Since then I’ve dealt with depression, PTSD, and anxiety. I now have a 5-6 inch vertical scar down my belly. I lost what felt like all of my muscle. I lost 25-30 pounds. Months following, I lost more than half of my hair. I lost my job. It took months to be able to breathe or eat without pain. This experience completely changed my life.
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.
“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.
I’m an artist, an advocate, a wife, a mother, a grandmother, and most recently a victim of dental malpractice. I was actively pursuing my passion as a Semi-professional “Singer/Song Writer/Radio Host/Animal Activist” until the reality of declining health forced me out of everything I loved and worked so hard to achieve.
I lost most of my teeth at the age of 16, due to having little to no medical or dental care. The easiest solution financially for my parent at the time was to have them pulled. Because of my age, my jaw was not yet fully developed and my maxillae (upper jaw) immediately began to resorb. Over the next 27 years, my maxillae resorbed so drastically that I became a dental cripple.
Unable to effectively and comfortably support a denture, my husband remortgaged his home and paid $68,000 for me to start the process of doing a dental restoration. That involved a sinus lift, a bone graft from my hip to my maxillae, and 11 implants finished with crowns and bridges. It all went well with the surgery and implants. There were no issues until I got the bridgework installed, that’s when my nightmare began.
After a 9 year struggle for answers from the consistent dental issues and continuing declining health, I learned my dentist made a serious error in measurement. I had a constant uncomfortable feeling. However, when I expressed the “vise grip” feeling and rocking issues I had been experiencing, it was always ignored. Later in 2014, I learned that the removable prosthetic should have seated right away after insertion without any discomfort, but that was never the case. I was also told by the lab owner that designed it that stability is vital to ensure the longevity of the implants and dental device. When the dentist first saw that I had to bite down hard several times to get the clasps to close, he should’ve immediately addressed the issue. Instead, he never directly addressed it as if to imply there isn’t a problem.
I went to my oral surgeon in 2015 to express my concerns. He verified that I should not be experiencing movement or discomfort. After checking my prosthetic, he validated there was definite movement and acknowledged that is not good for the implants over the long term. Furthermore, I learned from the Lab owner that the metals used in my restoration (bridges/crowns) were not Titanium as I was told (which I had paid for and seen advertised on their website), but rather a combination of dissimilar metals. This is a practice that is all too commonplace and potentially puts patients in harm. Because of the labs choice to use those metals, I am now suffering from extremely ill health from metal poisoning along with the daily struggles of malfunctioning and deteriorating dental work.
It has been validated by both my Allergist and several other prosthodontists that my suffering for the past 9 years was caused by the initial error in measurements in combination with the lab’s use of dissimilar metals. Serious allergies to the materials used in my restoration have developed from their mistake and continues to negatively impact my life. Some of my symptoms include constant mouth rashes, nightly tongue swelling outlining metal attachments, dry and burning mouth, and loss of sublingual glands (Saliva), along with numerous systemic issues.
Through this preventable tragedy, I have created an advocacy web site to help others become more proactive in their dental care. Understanding how metals interact in the oral cavity along with learning the right questions to ask is the best way to ensure the best outcome! I encourage readers of my story to take advantage of a page I designed specifically for dental patients on my advocacy site. It contains a wealth of important info that anyone can use to make a more informed decision and avoid the pitfalls of deceitful practices.
This is a picture of Richie’s last birthday. He told us it was his Golden Birthday because he turned 27 on the 27th (of January). He said his life would have good things ahead.
Richie was well educated, graduating from the University of Texas at Arlington with a degree in English and Journalism. He was funny, with a quick wit and always a smile. He was a loyal and loved friend to all who knew him. His passions were writing and music.
Richie also had an addiction to heroin which we learned of in 2005. He continued to work two jobs and maintained a loving and close relationship with our family. We had our boundaries and he respected them. We viewed Richie’s addiction as an illness, not a moral issue.
Monday July 19, 2010 I called Richie to meet for lunch. He said he wasn’t feeling well and was having a hard time breathing. I immediately went to see him. He was weak, pale, and cradling his left arm. His arm was swollen from his shoulder and chest to his hand. When I asked what happened, he said he had relapsed.
My decision to take him to Parkland Hospital in Dallas, Texas was my belief that they could take care of his drug issues and care for the possibility of an infection in his arm, along with generalized pain and discomfort. Richie was admitted to ED at 17:40 with a diagnosis of cellulitis left upper arm; history of IV drug abuse.
Throughout the night, I made several requests to his nurse for pain meds and meds for withdrawal. This is what he rec’d:
21:50 – morphine 4 mg IV
23:49 – morphine 4 mg IV
03:23 – Valium 5mg po
Richie never received relief from any of his symptoms. He was repeatedly short of breath and fainted at one point. I was at his bedside all night and his nurse never even observed his arm. Nurses showed little interest and never documented these events.
07:20 July 20th – Richie was finally given a bed on the surgical unit.
12:15 – Richie began to show a rapid decline. He fainted in the hallway and then returned to bed.
13:40 – Finally sleeping, Richie then vomited a large amount of coffee ground material. As I assisted Richie to the restroom to help him clean up, he had a seizure. After my call for help, it took three of us to get him back to bed. He was extremely short of breath, his body cold. He said he couldn’t breathe. I told the nurse he was septic and going into shock. Dynamap was unable to read a b/p or oxygen saturation. The charge nurse called Richie’s doctor who was in the OR. The doctor told the nurse to call the RAT Team (rapid response) or call the MD who was covering. She chose to call the covering MD. This is when the most precious moments were lost to save my son.
14:20 – MD came to bedside. As she left the room to write orders, Richie had another seizure with coffee grounds from his nose and mouth. Code Blue was called.
15:45 – Richie transferred unresponsive and on a vent to SICU. Accepting MD note: Pt coded on floor; probable aspiration thought to be related to narcotic withdrawal.
22:59 – Life support was removed and my son was gone.
I have been a registered nurse for 40 years. I have always loved my profession and the patients I cared for. I would treat my patients as I would want my own family treated.
As I left the hospital in the early morning hours of July 21, 2010, I swore I would do anything to be sure no one else ever suffered like this again.
On April 1st 2012, our lives changed forever. On that day, our 12-year-old son died from sepsis. Rory was a bright, civic-minded boy with a reputation as an ally of underdogs. At his school in Queens, he was elected to the Student Council and led a campaign entitled Spread the Word to End the Word to curtail the casual, derogatory use of the term “retarded.” He was passionate about politics, his Irish heritage, and aviation. He was a loving big brother to his little sister Kathleen and together they spent many happy times with their friends riding bicycles and playing in the local park. He dreamed of becoming a pilot like his hero, Captain Sully Sullenberger. He had his first flying lesson on his 12th birthday.
On March 28, 2012, Rory grazed his arm while playing basketball at school. After his fall, Rory’s gym teacher put two Band-Aids on his arm; he did not send him to the school nurse or clean the wound. Late that night, Rory woke up moaning with a pain in his leg. We coaxed him back to sleep and the following morning he awoke with a fever of 104. We called his pediatrician and took him to see her that evening. She took his vital signs and we showed her the scrape on his elbow. She noted his mottled skin, the pain in his leg he complained of, and the stomach tenderness he moaned about. His vital signs were dangerous at that stage but she showed no cause for concern and did not communicate them to us. She listened but dismissed our concerns, saying Rory had a stomach virus that was making its way around New York. She advised us to take him to the hospital for rehydration and fluids, saying the virus would run its course and that there was no cause for concern.
We took Rory to the emergency department of a major New York hospital where the doctors said Rory’s pain was caused by a sick stomach and dehydration. He was rehydrated and prescribed medication for nausea. They drew blood but did not read the results of the blood test. The laboratory in the hospital had actually flagged Rory’s blood as showing an abnormality within an hour of Rory’s arrival there, but there was no system in place to alert the emergency room with this information. When the critical value tests returned showing that Rory was extremely ill, no one raised any concern. No attempt was made by the hospital to contact us and tell us that our son was gravely ill. The hospital discharged a child who was, in fact, fighting for his life.
Rory fell into a deep sleep on Thursday night but awoke the following day in pain and with a fever that we could not bring down with medication. After repeated calls to his pediatrician, we returned the ER on Friday evening; this time he was admitted to the ICU. Rory was fighting a serious infection. This infection had been in his blood when we brought him to his pediatrician and to the hospital on Thursday. Bacteria had entered his blood through the cut on his arm. Rory was in septic shock; he died on Sunday evening. We cannot begin to convey the depths of our grief at the loss of our beloved son. The realization that Rory died of sepsis, a condition we had no knowledge of, and that his death could have been prevented by any of the medical professionals who attended to our son following his fall, is almost unbearable to contemplate.
Following Rory’s death, we began to research sepsis. We learned that it is the leading killer of infants and children worldwide and that it takes more that 250,000 American lives annually. We established the Rory Staunton Foundation for Sepsis Prevention and now devote ourselves to raising public awareness of the signs and symptoms of sepsis and implementing sepsis protocols in hospitals across the country. Our goal is to ensure that what happened to Rory will never happen again and that no parent will experience the devastation of burying a child, knowing that the child’s death was preventable. Through our work, we honor Rory and his belief in the power of individuals to bring about positive change. He will live forever in the work we do in his name.
My name is Brenda Ludens. I have been employed as a Respiratory Therapist for 23 years at a hospital in Sioux Falls, SD. My Mother, Norma Reiners, was a resident of a rehab unit in Sioux Falls from Aug. 27 to Oct. 13, 2014. At that point she was just four days from a scheduled return to her home following rehabilitation for a broken ankle.
My mother celebrated her 85th birthday on May 23, 2014. She was not your average 85-year-old. When I would call her at 6 a.m., she typically had already walked two miles on the treadmill, read her devotions and probably a couple chapters of her current novel, and had a batch of homemade bread rising. She was the 85-year-old who drove her friends to church activities, hair appointments, and whatever else they needed. She was politically active, continually fighting for the rights of women and children, particularly those who were abused and neglected. As part of her 85th birthday present, I asked her if there was anything she wanted to do that she hadn’t. She said, “I’ve always wanted to see an opera.” My sister and I planned a fun weekend to Chicago, IL in late September with opera included. Sadly, that trip never happened.
My beautiful mother, my best friend, and my personal hero passed away Oct. 15, 2014, from sepsis. Coincidentally, this was also the day of my daughter’s 33rd birthday. Prior to Mother’s death, my family and I only had a vague awareness of sepsis. Since her passing, we have learned just how quickly it can act and how very deadly it can be. This is my story.
On August 24, 2014, at 2 a.m., Mother called me and said, “I think I broke my ankle.” We proceeded to the ER and surgery was required to repair the fractures. Approximately 14 hours later, surgery was attempted, but due to fracture blisters and swelling, surgery could not be done and an external fixator was placed. She could not bear weight on that leg, and would be wheelchair-bound and unable to care for herself. It was recommended she go to a skilled nursing facility for rehab and preparation for surgery. The facility was our first choice and we were thankful a bed was available. She approached her placement there with a good attitude and was ready to do the work required to return to her own home. Unfortunately, the fracture blisters were not healing and surgery was continually postponed. After seven weeks, she was still at the facility but eagerly anticipating a return to her home. She was looking forward to an appointment with the orthopedic surgeon on Oct. 13 to remove the fixator and apply a cast.
On Oct. 9, therapists took her on a home visit to see if she could manage life at home. In my mind, I thought the home visit should not have been done while she had the external fixator on (increasing her risk for injury). But I thought, “They’re professionals. They must know what they’re doing. Not to worry.” The day went well, but that evening she developed exceptional pain in her leg and ankle. Prior to this point, she amazingly had not had any pain at all.
When my daughter visited her the next day on the 10th at suppertime she was in bed, which was very unusual for her. Typically she would be in the dining room enjoying her meal and visiting with residents. Up to this point, she had been doing everything for herself. Getting in and out of bed, down to therapy, to and from the dining room, on and off the stool. She did it all from a wheelchair with a heavy device on her leg but she did it on her own. Now she was nauseous, weak, and there was drainage from the pin sites of the fixator.
After her death, I obtained her medical records. Throughout the weekend there were several references to nausea, emesis, drainage from the pin sites, increased pulse and temperature, all signs and symptoms of sepsis.
On Saturday, Oct. 11, I spent the whole day with her. I was worried. Her condition had clearly changed. I visited with the physical therapist on duty. I was concerned that maybe something had been damaged during the home visit. In his opinion, he didn’t think that was possible but suggested I have the RN call the orthopedic surgeon to alert him of her change in status. I did that, and later that day she said the call had not been returned. I’m thinking, “The RN does not seem overly concerned about this, maybe I’m over-reacting.” The next morning, when I arrived early, the RN told me she placed another call to the orthopedic surgeon because of my Mom’s persistent increased temp. Later that day, she told me the PA returned the call and said because my mother had an appointment the next morning at 8 a.m. we should just wait and have her evaluated then. I’m okay with that because I think these medical professionals don’t seem to think this is an emergent situation, so again, not to worry. I have to say, I was somewhat comforted by that.
The next morning, October 13, I picked her up at 7 a.m. Clearly, her condition had not improved and in my opinion had only gotten worse. But I thought, “Now we’re going to the Dr. Finally we’ll get to the bottom of this.” I told her, “Mom, they will probably admit you to the hospital. I think we should be prepared for that.” Well, if only that had happened. When I told the orthopedic surgeon how her condition had changed, how concerned I was, and that I thought she should have an IV and be admitted to the hospital, he jokingly said, “Do you think it’s EBOLA?” I couldn’t believe it! By this time I’m thinking I’m in the Twilight Zone. There just aren’t words to express how I felt at that moment. I’ve been surrounded by medical professionals for seven weeks and this is what I get a joke about EBOLA?
Anyway, after the fixator was removed, a cast was applied and we were free to go, I asked one more time what we should do about her present condition (she even threw up in the doctor’s office), the orthopedic surgeon replied, “It’s probably a flu bug, but you MIGHT want to call her primary care physician.” In his defense, he ordered an oral antibiotic (which she likely would not receive until much later and probably wouldn’t have been able to keep down due to nausea and emesis.) Again, I’m thinking, “He’s the Dr. If he thinks this is not a big concern it must not be.” Again, I’m comforted by this. I think I’m just overly concerned because I love her.
In my gut, I knew something was wrong. I wish I had trusted that gut feeling. I wish I had screamed and yelled for someone to take me seriously. I wish I had taken her to ER then. Sadly, I placed all my trust in the medical professionals caring for her. So back to the nursing home we go.
Immediately upon our return I ask the RN to call her PCP. Of course, you know how these things go. You place the call, you wait to have the call returned, you get orders, it takes forever to get the orders implemented. By that afternoon, labs had been drawn, the RN attempted to get a urine sample, but was unable to do so, and my mother was confused and complaining of chest pressure. We were waiting for a call back from the PCP. I was beside myself with worry and I called my brother to relieve me, which he did immediately. I ran home quick to splash water on my face and calm down. I’m thinking, “I’m going CRAZY! My Mother is SICK and NOBODY CARES!!!” About that time, the phone rings and it’s the RN telling me the Dr. called back and my Mom should be taken to the ER for evaluation. FINALLY, someone is listening to me. I say, “So do you call an ambulance?” She says, “Oh no, you have to take her.”
Keep in mind, my brother is right in her room and I’m 15 miles away. I go back, we load her in the car and take her to ER. Looking back, I wish I would have stood right at the desk and called 911! Sadly, by this point it probably wouldn’t have made any difference. It was too late.
Well, you’ve probably guessed the end of the story by now. By the time we got to the ER my wonderful mother was practically unresponsive. She had suffered a heart attack, and had a raging urinary tract infection. She was transferred to the ICU and over the next 48 hours the family gathered at her bedside. My mother had very explicit directions regarding her end of life issues. When it became apparent that intubation and mechanical ventilation were necessary to keep her alive, we had to make a decision. About 8 p.m. on October 15 we made the transition to comfort care and we lost her at 11:30 that night. Cause of death: SEPSIS.
According to the Centers for Disease Control, and Prevention and Sepsis Alliance, more than 258,000 people die from sepsis each year in the U.S. It is the third leading cause of death after heart disease and cancer and is the #1 cost of hospitalization in the U.S. My mother was at especially high risk: she was elderly, she had open wounds, and she had an invasive device on her leg. Signs and symptoms of sepsis were present throughout the entire weekend prior to her death: fever, increased heart rate, pain, confusion, nausea, and vomiting.
We have learned that early detection and treatment are the key to recovery. My family and I believe that had her condition been taken more seriously and treated appropriately, her outcome could have been very different. Looking back, I blame myself, but in my defense, I entrusted her care to medical professionals. I kept thinking, “If they think she’s okay she must be.” Unfortunately, my family and I feel the medical community let us down. We intend to tell this story to anyone who will listen, we intend to speak loudly and often about SEPSIS, in hopes that no other family will have to suffer such a loss as ours.
Ten years ago, a young California political leader entered a Los Angeles hospital for gall bladder removal and bariatric surgery and died three days later with no cause given for his death. Lloyd Monserratt was a 36 year-old man who believed in community empowerment and social change. He was a Latino vote director for the Democratic Congressional Campaign Committee (DCCC), director of constituency services at NALEO, and a chief of staff for the City of Los Angeles.
During the three days that Lloyd was in the hospital, I was never told that his condition was deteriorating. In fact, the surgeon told me his operation was a success. This could not have been further from the truth. Hours before Lloyd died, I asked another physician if he was progressing normally and was told he was “exactly where he should be.” A later review of Lloyd’s medical records clearly showed that he was in organ failure. The reality was that Lloyd was on his deathbed and neither his physician nor anyone else in the hospital felt the need to tell us that there were complications from the surgery and he was facing death.
With no one willing to provide a cause for Lloyd’s death, I hired a pathologist to conduct a private autopsy. I also contacted the Los Angeles County coroner and asked that they confirm the results. The pathologist stated that the surgeon had perforated the bile duct during the gall bladder surgery. Left untreated, infection had set in and Lloyd had died of sepsis. The pathologist stated that the hospital had had until the night before he died to go in and save Lloyd. Test results showed Lloyd’s condition, yet his physician never wrote new orders as his condition deteriorated. The county coroner agreed with the findings and changed the death certificate to reflect that this was not a death by natural causes.
Sensing that there had to be something else, I continued to investigate. I learned that Lloyd’s physician had been arrested three times in a 10-year period while a licensed physician in California. One arrest was for felony possession of crack cocaine. The California medical board website did not show any disciplinary actions on his records and did not reveal any criminal issues. At the time, physician substance abuse problems were kept confidential and to a large part still are. The public has no right to know if their physician has a substance abuse problem that would directly affect their medical care.
Lloyd’s death caused me to seek change in physician accountability and transparency. In 2008, due in large part to Lloyd’s story, the California General Assembly passed SB 1441 (Ridley-Thomas), creating uniform and specific standards for dealing with substance-abusing licensees. The medical board website now shows information on impaired physicians that was once confidential. Amendments in other legislation have provided other safeguards. Much has changed since Lloyd’s death, but there is much to do.
There are no words to describe how one survives losing Lloyd Monserratt. His devotion to me, to our family, and to a community have been what has driven me to continue to testify before legislative hearings, challenge the California medical board to fulfil its mission to protect the public, and to make a legislative change that will still save lives. Lloyd was a problem-solver. He should have had the right to know his true condition while in the hospital and been given the option to find the care he needed to save his life. Lloyd was committed to changing people’s lives through the political system throughout the state of California. Yet, tragically, the state of California failed Lloyd.
On September 19, 2010, I suffered the greatest loss of my life. My husband, Donald James (DJ) Sterner died unexpectedly and needlessly due to a food poisoning infection he contracted while an inpatient at a Texas hospital. In short, his intestines were broken down by Clostridium perfringens bacteria and leaked into his bloodstream, causing organ failure and cardiac arrest. Medical staff dismissed his complaints of pain and failed to diagnose and treat his food poisoning infection and resulting septic shock. He died an excruciatingly painful death, which has compounded my grief. The horrific images of the last 24 hours of his life are forever burned into my mind.
Approximately 24 hours before his death, DJ displayed symptoms of food poisoning. He vomited three times in short succession and was complaining of severe stomach cramps near the bottom of his ribcage. He was not able to have a bowel movement and could not get comfortable. He was fidgeting every few seconds in his bed and was sweating profusely. His breathing had become so rapid he appeared to be panting like a dog. Despite being given morphine injections, his pain continued to increase throughout the day.
When DJ’s doctors came to his room during their normal round time, they dismissed his severe pain and difficulty breathing as anxiety and indigestion. Even the nurse told me DJ was just having anxiety. I had to argue with the nurse in the hallway outside his room that I had never seen my husband in this state before.
Both of DJ’s doctors failed to listen for bowel sounds and failed to take his vital signs, which would have alerted them to signs of septic shock. With the exception of an abdominal x-ray, they ordered no tests to try to ascertain the source of his pain. When one of the doctors palpated his abdomen and my husband cried out in pain, the doctor just made a startled face and walked out of the room. We never saw the doctor again.
As his condition deteriorated, DJ threw his hands up into the air and said, “That’s it. I want to be sedated.” He told me that he was scared and didn’t know what to do. These statements were very uncharacteristic of my strong-willed husband. Two resident doctors were then paged to come to his aid. However, with no explanation given to this day, neither of these resident doctors responded to the seven different pages of his nurse.
Every patient deserves proper medical care. I strongly believe that if a Patient Activated Rapid Response Team program had been in place, I would have called it and DJ would have received the medical attention he so desperately needed.
The leading cause of preventable deaths in U.S. hospitals is failure to rescue. This crucial patient safety measure will surely reduce these unnecessary deaths. Since patient-centered care is the goal of our medical care system, what better way to achieve that goal than to put the patient squarely at the helm?
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.
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.