Unite for Safe Care - patients, advocates, health workers and leaders, together globally - working to ensure patient and health worker safety in every nation on earth.
The Problem
A Central Line-associated Bloodstream Infection (CLABSI) in one patient can result in as much as $56,000 for payers, due to a mortality rate of 14-40% and an average prolonged length of stay of between 7.5 and 25 days (Ranji et al., 2007). Researchers estimate that process change and the
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“An underlying medical condition” is no excuse for lethal medical errors.
Millie Niss was a much-published web artist and poet. She was my only child and a wonderful daughter. She was a talented patient advocate due to a lifetime of painful and debilitating illness, diagnosed as Behcet’s Disease in her early 30s.
Behcet’s is a rare, auto-immune, inflammatory disease which causes vasculitis anywhere in the body. It is often characterized by severe joint pain, skin lesions, and vision loss. It is rarely fatal, but involves frequent medical intervention.
I am a retired psychologist with decades of experience in advocacy. Yet our experience and our instinct that Millie’s care in a community hospital ICU was going desperately wrong could not save Millie.
Millie died November 29, 2009. She was 36 years old. She entered the ICU on November 1, 2009 with swine flu and was intubated. But she was not silenced. After she had recovered from the flu, but a week after becoming paralyzed from the chest down, Millie wrote:
I actually asked Dr. W, if I was still at risk of relapse, and she seemed quite confident, but I sensed something was stewing ‒ I think I got a secondary infection whose symptoms didn’t show until the first day upstairs [brief transfer out of ICU]. I became feverish and my throat felt suddenly worse when it had been OK earlier. Now I hope we can treat the infection successfully FIRST before trying to wean [off the ventilator] at all. (Nov 21st)
What did we know and when did we know it?
From admission testing, we knew Millie was free of infection other than swine flu when admitted
Developed MRSA and other infections in her central line, urinary catheter, and lungs
Developed sepsis
Required emergency surgical procedures at bedside
Intubated/reintubated
Readmitted to ICU
Received antibiotics intermittently despite her immune-suppressed status
Required multiple transfusions due to medications given after we had refused them
Waited nine days for a CT scan despite our protests
Never had an MRI, though one was recommended
We did not know the hospital:
Had more than a dozen active “Plans of Correction” on Millie’s date of admission.
Had received 72 citations from New York Department of Health since 2005.
Lacked patient complaint policies and procedures, as was discovered in a routine survey by the Medicare accrediting agency a year later, resulting in a Plan of Correction.
Millie had endured and been damaged by medical care previously ‒ often enough that she had requested an autopsy if she died.
The autopsy revealed her cause of death as osteomyelitis of the 8th thoracic vertebra with near total necrosis of the spinal cord, severe epidural inflammation and abscess: a missed diagnosis.
The New York Department of Health issued two citations related to Millie’s care.
-Martha Deed, Ph.D., Author, The Last Collaboration (Furtherfield, 2012). A multi-genre fatality review.
On Sept 21, 2013 we and others were involved in a serious boating accident in which Jennifer sustained multiple internal life-threatening injuries, including several broken bones, head and neck trauma, and external lacerations. She was airlifted to a Level 1 Trauma Center and underwent multiple emergency surgeries.
She remained in a medically-induced coma and on life support systems for the next three weeks. In addition to her recovery from the injuries, Jennifer had to battle hospital-acquired conditions including VAP (Ventilator Associated Pneumonia), a UTI (Urinary Tract Infection), and BSI (Blood Stream Infection) before she regained consciousness and was able to breathe on her own through a trach airway.
After a total of four weeks stay in the Trauma Unit, she was discharged to an LTAC (Long Term Acute Care) facility. Soon thereafter, additional complications showed up including surgical site infection at the trach and a Peg Port infection in the abdomen. After three nights at the LTAC facility, Jennifer had to be admitted back into a Community Hospital for treatment of these newly acquired complications.
After two weeks at this hospital, her condition had significantly improved to where she had become mobile, was disconnected from most all tubes and lines, was able to go to the bathroom on her own, and was looking forward to eating soft foods again. At this time, she was breathing on her own, however, still with assistance through the trach port. Discharge planning had begun and we were told that by Wednesday morning she would be going home and would receive physical rehabilitation assistance. We really thought we had climbed a huge mountain and were now homeward bound.
A final requirement in support of the discharge and to starting on soft foods was that Jennifer needed to pass a barium swallow test.
Early Monday morning during this swallow test it was discovered that Jennifer had a TEF (tracheoesophageal fistula), which is a hole in the tissues between the trach and the esophagus. This a very serious complication and it requires a complex surgery to repair. This discovery triggered a series of intervening events, or at least we assumed so.
First and foremost, as a result of the barium migrating into her lungs, this brought about a high degree of respiratory distress. Over the next 36 hours, Jennifer was bounced and transferred back and forth between multiple units and caregivers. Her respiratory distress was also misdiagnosed as anxiety and thus multiple doses of Ativan were administered, further complicating the situation.
As the distress continued to progress, it ultimately landed Jennifer back in the ICU on Tuesday afternoon. There were no rooms available at this time, so they placed her in a recovery area, at which time the decision was also made to place her back on a ventilator.
Sadly, the caregivers at the time were unaware of the recently diagnosed TEF and they simply began ventilation through the existing trach. For the next 6 hours, they increased the cycle rate and O2 concentration levels until they were at 40 cycles per minute and 100% oxygen. No physical assessment was made, no blood gases were taken, and no ETCO2 monitoring occurred. All the while, the air being pumped into Jennifer was not going to her lungs, but instead escaping and collecting into her abdomen via the TEF.
At 12:04 AM, her body and organs had become completely oxygen deprived and Jennifer went into full cardiac arrest. A code blue was called and CPR was administered for 14 minutes, finally resulting in a restored heartbeat.
Needless to say, her brain had been so severely deprived of oxygen and glucose during this extended period of time that an unrecoverable amount of damage had occurred. The code blue team discovered Jennifer’s belly had been extended to 4X normal size, They did an emergency pressure relief through her abdomen and then re-intubated her, removing the trach and then using a longer ET tube where they isolated the TEF from the lungs.
For the next three weeks, Jennifer was kept alive on life support while remaining in a totally non-responsive state, during which time countless tests, scans, and neurological consults were conducted, all of which pointed to the same conclusion: massive and non-recoverable brain damage.
On November 19th, the decision was made to discontinue life support as there was no hope of reversing or recovering from the complexity and tragedy of these multiple medical communication hand-off errors and acquired complications. To this day, over two years later, not a single person at the hospital has ever said a word to me about the death of my beautiful wife.
Oddly, Blue Cross/Blue Shield (the member Health Plan) paid everyone involved in full, to the tune of $2.1M in submitted medical bills. BC/BS did not even know that Jennifer had passed away from these errors until I contacted them 1.5 years after the fact. And we all wonder why these types of patient safety tragedy stories continue to occur year, after year, after year. It’s really not hard to understand…to say that the system is broken is a gross understatement.
If I had not witnessed it with my own eyes, I would not have believed it. How could anyone have so much bad luck? How could bad luck be so devastating?
Nora’s bad luck began even before she was born. I was young and healthy with no pregnancy risk factors. My doctor ignored me when I complained of pain contractions and heavy bleeding for weeks. He told me it was not as bad I thought and, anyway, nothing could be done. My water broke at 23 weeks as a result of prolonged bleeding and contractions.
Nora was born on December 11, 2009 – four and a half months early. She weighed 1 pound 5 oz. She was immediately taken to the Neonatal Intensive Care Unit where she spent 129 days. We were so delighted when we finally took her home after four-and-a-half months. But two months after she came home, Nora vomited and turned blue. That’s when Nora was diagnosed with pulmonary hypertension (“PH”). PH is a disease characterized by abnormally high blood pressure in the arteries of the lungs that causes the right side of the heart to work harder than normal. Nora used supplemental oxygen and oral medications to treat her PH. She needed to be on oxygen 24/7 and take oral vasodilators to help reduce the pressure in her lungs.
The doctors assured us Nora would outgrow her PH and thrive. We were very dedicated to ensuring that she ate well and stayed healthy. We had a lot of fun with Nora for the next two years – taking her to the playground, the beach, and for rides on our bikes.
But suddenly, her PH worsened. She started fainting – a serious symptom of worsening PH. The only other treatment was a continuous IV infusion of a potent vasodilator called Remodulin. In order to receive it, Nora would need a central line in her chest that would be threaded to just outside her heart. She would be hooked up to a pump 24/7 that would pump Remodulin into her. They warned us there was a risk of life-threatening infection with a central line. They told us it was imperative that we strictly followed protocol in changing her dressing and in mixing her IV medication. We studied under a nurse and practiced many times before we went home. The home nurse was also assigned to follow us at home and guide us so that we could keep Nora safe from infection.
Shortly after getting the central line, Nora developed an allergy to something in the dressing or the cleaning products. The home nurse said that we should change the dressing change protocols so that she wouldn’t have an allergy any more. So we changed protocols and sure enough, her allergy started to go away.
Nora did extremely well on IV Remodulin. She no longer fainted. She was running around the backyard and climbing stairs. She had a great appetite, was sleeping well, and was generally happy. She celebrated her third birthday with a walk around the neighborhood to see all the awesome Christmas lights. We were so happy.
Then, within two months of changing the dressing protocol, Nora developed a central line infection. They removed the line and put a temporary one in her arm. After a few days, the nurses did a dressing change and sent us home. The next day, Nora had a central line infection. Her arm was terribly swollen. When they pulled out the line, her arm was filled with pus. So the doctor switched Nora to subcutaneous Remodulin delivery that did not require a central line.
But after that, Nora continued to faint or nearly faint, and she was not herself. One morning, Nora fainted and we went to the ER. We were there for nearly nine hours. During that time, Nora was not able to eat or drink and did not receive any IV fluids. As we pulled into the ICU after nine hours of waiting, Nora crashed. She was in acute heart failure and was dying. We were told that Nora had become severely dehydrated and that had caused her blood volume to shrink. With her already exhausted heart pushed to the limit, there wasn’t enough blood to pump to the lungs.
Yet, somehow, she survived. Nora spent the next 70 days in that room in the ICU recovering from nearly dying from dehydration.
Over time, it became clear that she should get a central line to deliver a heart failure drug. So we switched Nora back to IV Remodulin at the same time. Within hours after the switch, Nora started to improve. Clearly, the SubQ (subcutaneous administration) did not work.
We had received training on how to properly wash our hands and wear masks before accessing Nora’s central line or changing her dressing. When we were in the hospital, however, we often witnessed nurses not following proper hand washing. For example, a nurse washed her hands and put on gloves. Then she went over to Nora’s bed and used her gloved hands to lower the bed rail on Nora’s bed. Then she reached to open Nora’s line. The bed rail was not sterile, but the nurse did not start her hand washing over again. We saw nurses touch monitors and pumps after washing their hands. We saw nurses open Nora’s line while leaning over Nora’s tiny chest without wearing a mask. Every time we saw nurses break the protocol, we politely asked them to wash their hands again or to put on a mask. But we could not watch the nurses every second. The pressure was unbelievable – we knew it was life or death for Nora – but we couldn’t control everything.
About six weeks after Nora got a central line, Nora developed another central line infection in the Cardiovascular Intensive Care Unit (CVICU). Hospital personnel just told us that “it happens” and “nothing can be done.”
Nora had a hard time walking for any distance and could not dance or play. But she was finally stable enough to go home. The doctors suggested replacing the temporary line in her arm with a tunneled one in her chest before she went home. When Nora came back from having the line placed, the insertion site was purple and swollen. There was blood around it and the insertion itself seemed jagged. Within 32 hours, Nora had a raging infection at the insertion site. The site became extremely swollen and the skin started pulling back from central line. Nora had a hole in her chest and I could see up into her body. Nora had to have intravenous antibiotics and this delayed her discharge home. After that infection, she was even worse.
We were finally able to bring Nora home. We had a little over two months at home together. We took Nora for lots of bike rides. She sat in a little pool on the patio and played with toys. She loved baking and cooking and doing crafts. We read many books and watched lots of DVDs. Then on Halloween, Nora did not feel well enough to go trick-or-treating. She had been looking forward to it for weeks. Within a few days, she almost fainted upon waking. We took her to the hospital. Within 48 hours of arriving at the hospital, Nora got a fever. She quickly started to crash and by that night she was in septic shock. We learned that Nora had contracted croup in the hospital. There was not much we could do but wait and hope and pray.
Nora held on for nearly two weeks. Unfortunately, she was the victim of more preventable errors. A nurse gave her a double dose of a potent diuretic that sent her into acute dehydration and heart failure. Someone else mistakenly discontinued her IV nutrition for three days until I discovered it. Nora was fighting for her life without any nutrition at all.
But one day, Nora’s heart rate started going higher and it would not come down. Nora was uncomfortable and scared. She reached up and to me and said “hold me.” My husband was right there next to me. I held her tight and she said “please help me feel better.” Then I pulled her head down on to my shoulder. She seemed to lose consciousness and she slowly slipped away. We cradled her in our arms and looked at her beautiful face as she took her last breaths. Our beautiful, compassionate, smart, funny daughter who had everything going for her – except luck – was gone.
Josie King was admitted to the hospital after suffering severe burns from climbing into a hot bath. She had healed, and was set to return home two weeks later. Josie died days before she was to be released. She had an undetected central line infection and severe dehydration.
After she left the PICU, Josie’s central line was removed. Every time she saw a drink, she screamed for it. She was sucking feverishly at her washcloth. Josie’s mother asked the nurses about this and was assured it was normal, although it was not something Josie had ever done.
Sorrel King had been with her 18-month-old daughter every minute from the day she entered the hospital. The nurses assured her Josie was doing well, and suggested it was time for Mrs. King to sleep at home.
Arriving back at the hospital at 5 a.m., Josie’s mother knew something was drastically wrong. The medical team was called. They administered Narcan, and Josie’s mom asked if she could give her daughter something to drink. Josie gulped down a litter of juice. Verbal orders were given: no more narcotics. Josie began to seem a little better.
At one o’clock, the nurse entered with a syringe of methadone. Sorrel told her there was an order for no narcotics. The nurse responded that the order had been changed, and gave Josie the injection. Soon after, Josie’s heart stopped. Her mother was ushered out of the room.
The next time Sorrel saw Josie, it was back on the PICU floor. Her child was hooked up to many monitors and looked awful. Eighteen-month-old Josie King died in her mother’s arms two days later. She had a hospital-acquired infection, was severely dehydrated, and had been given inappropriate narcotics.
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Central Line-Associated Bloodstream Infections
