​Kim Neudorf has been a patient champion with Patients for Patient Safety Canada since 2009. Her areas of interest include health promotion, patient safety, patient engagement, infection prevention and control, and antimicrobial stewardship. Kim recently co-authored a paper that provides an overview of patient advisors' perspectives on the state of antimicrobial resistance and stewardship in Canada, Engaging patients in antimicrobial resistance and stewardship.

Each time I tell this story, it seems more unbelievable. I wonder if this experience had to be extreme for me to take notice and realize patient safety isn't something that can be taken for granted. And later it made me realize that I needed to be a part of the solution.

I took immediate notice of the change in Mom, as I met her at her front door. Her usual welcoming smile was replaced by a grim, puffy face and swollen, blue-tinged lips. I tried to make sense of the dark brown mittens she wore on that warm June morning. Her soft moans and one-word replies to my probing questions told me everything was an effort for her—that she was really sick. Barely audible, she whispered these words, "Backache…flu…fever…weak."

It was clear to me she needed to be seen in emerg. I am a retired nurse and viewed her situation to be pretty straightforward. I expected her to receive the required diagnostics and treatment, and be treated well. I trusted the system that I'd worked in all those years prior. I did not expect my seventeen-year-old daughter to ask this question days later: "Doesn't anybody care about her?"

Mom walked into the emergency room. I was with her, concerned about what was percolating in her body and her mental decline. She was diagnosed with a urine infection, given a large bolus of IV fluid to correct her dehydration, an oral antibiotic (Ciprofloxacin), an opioid for her back pain, and released. The slippery slope began on that first day. The urine culture test was missed, she vomited right after she received the antibiotic pill, her pulse was well above her usual rate, and the necessary tests to diagnose sepsis weren't ordered, even though the physician mentioned it was a possibility.

She returned to the emergency department the following two days. The second day she arrived by wheelchair. The intravenous bolus of fluid she received the day before made her legs so swollen, none of her shoes fit and her breaths were crackling with fluid. The doctor asked if she had dementia. I worried that his assessment was overshadowed by how she presented at that moment. He would have seen an older adult, slumped in a chair, barely capable of answering questions—because as she told him, "my brain is in a fog." I knew I needed to be her voice, her eyes and ears, and in time understood that I would also hold her memories. I made a point of speaking about her previous vitality at every opportunity—at each history taking, during assessments, with each new interaction. I wanted them to be clear—what they were seeing now wasn't who she'd been.

On the third day she arrived by ambulance. She fell in her bedroom in the middle of the night, as she helplessly searched for her socks and pills—pills she'd already taken. She wasn't harmed, but she was in such a muddle and could not carry a thought through to complete a sentence. She had a fine rash over her body and the nurses had a difficult time getting an oxygen reading from her finger. The high intake of fluids washed the salts from her blood. Her heart rhythm was rapid and erratic. I informed the staff that on the first day she was seen in the ER, the physician considered sepsis. She was admitted to the hospital with the diagnosis of urinary tract infection and hyponatremia.

Mom's mental decline and extreme fatigue became a touchy point. I saw Mom as someone who needed more intensive monitoring and surveillance, so when the nurses popped in and said, "Oh good she's sleeping." I retaliated with, "She's almost sleeping around the clock—it's not a good thing. She seems toxic."

I believe the medical team trusted that once the antibiotic took hold, Mom's condition would improve; so we were told, "Slowly," and that they would "Wait and see." The twelve day course of Ciprofloxacin may have contributed to the complications that evolved. I asked the team to investigate deeper, and offered many suggestions. They seemed to be missing something. I thought I was a partner participating in Mom's care, in her best interest. I was wrong.

This experience can be described as watching someone drown with a life preserver on. You expect it will help, but it's not, and you're watching that person die in front of you. As a nurse, I could influence the system—make good things happen in the worst of circumstances, but as a family member I was powerless. Therefore, I second-guessed my own ability to judge the situation objectively. There was tension, I tried to be delicate and wanted to trust the team, but they didn't seem to see the changes we did. After repeated requests for improved care including a handwritten letter that was placed on the front of Mom's chart, I worried about the chasm developing between Mom's family and the staff, and wondered how Mom ever got into this quagmire.

On day ten as I fed my debilitated mother lunch, I noticed subtle, but ominous signs: her skin and eyes were tinged with a sickening yellow hue, her urine dark orange. These new findings were reported to the charge nurse. I believed it was a call to action—the action never came.

My brother called me that evening and said, "Mom looks like she's dying. She looks like Dad did when he died." Indeed she was. She was in a hemodynamic crisis—her red blood cells were self-destructing , and components of her blood dropped to levels incompatible with life. I had a hard time reconciling how my brother, a carpenter, could see that death was eminent, yet health professionals could not.

I won't forget her desperation hours later—her struggle to live. She looked like an apparition buried in stark white sheets, her skin pale, transparent with a yellow cast. When she saw me, she sat straight up, her eyes fixed with fear. Her hoarse, loud voice pleaded, "I'm glad you're here... I'm so sick." Mom wasn't sleepy any longer. Although her body systems were depleted, her resolve was fierce. I ran to the desk and called for help.

Her room became an instant hub of activity. Several physicians poured over her chart and concluded she developed autoimmune hemolytic anemia, pneumonia and was in a coronary crisis that resulted in a heart attack.

An amazing team took over. She was in the hospital for five weeks and it took six months before her vitality returned—she lived, but there was functional loss. That was ten years ago.

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Today sepsis protocols and early warning assessment tools have improved the odds of surviving sepsis.

Sepsis takes infection to another dimension. Pneumonia is the most common cause, but any infection can trigger the body's varied and complex response, that can either eradicate the infection or lead to multi-organ damage and death.

Sepsis is the leading cause of death in hospitalized patients. In 2011, Health Canada reported 30 to 50 per cent of people who develop sepsis die from it.[1] While complete recovery is possible, the after effects can linger with conditions that affect the heart, kidneys, muscle strength and mental health, and there is a predisposition to recurrent infections. Research indicates patients may acquire neurological damage resulting in long-term moderate to severe cognitive impairment.[2] These effects are devastating consequences to an individual's quality of life.

The severity and duration of a septic reaction to an infection is determined by a variety of factors. Children under one year are at greater risk, as are people with weakened immune systems, or chronic health conditions, and those over sixty-five years of age.[3]

Sepsis is not a new disease, and fortunately fewer people die from it today. However, sepsis remains difficult to diagnose because it mimics other conditions, infectious or otherwise. For the public, the best defence is a good offence: maintain good health and avoid infections, practice hand hygiene, keep vaccinations current, and cuts clean and covered. Learn to recognize the telltale symptoms of sepsis: temperature more than 38.3 C or less than 36 C, a heart rate more than 90 beats per minute, more than 20 breaths per minute, tissue swelling, confusion, and discomfort.[4] If these symptoms exist in whole or in part, go to the emergency department, and be prepared to announce, "I'm worried I may have sepsis,"[5] to avoid being placed to the back of the queue.

In order to beat the odds and survive sepsis, it must be recognized as a medical emergency. The longer there is a treatment delay, the greater the likelihood of progressive organ failure and death. Organ failure manifests itself with signs such as low blood pressure, an altered mental state, high blood sugar values in the absence of diabetes, low oxygen levels, changes in lab values associated with the blood's ability to coagulate, and a raised lactate level that indicates organs are not receiving enough oxygen.[6]

A standardized approach to the medical management of sepsis is reducing complications and death. Intravenous fluid infusion and diagnostic tests to determine the source of infection is strongly recommended for the best possible outcome. Intravenous administration of the most appropriate antimicrobial drugs, such as antibiotics should should occur within one hour. This appears to be the single most important intervention. Specialized monitoring systems and medications may be necessary to prevent organ dysfunction.[7]

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Mom remembered little of those weeks in the hospital. Together, we've shared her story with the public, health professionals and students. During our presentations we identified "pearls of wisdom" to ensure patients receive the right care at the right time. At the podium, Mom would describe her health goals and demonstrated her heartfelt gratitude to her family and all healthcare workers with her closing comment: "We need all of you!"

[1] Tanya Navaneelan, Sarah Alam, Paul A Peters, Owen Phillips, "Deaths Involving Sepsis in Canada. 2016"; Release date January 21, 2016, http://www.statcan.gc.ca/pub/82-624-x/2016001/article/14308-eng.htm
[2] Hallie C Prescott, Derek C Angus, "Enhancing Recovery from Sepsis: A Review," JAMA 319 no. 1 (2018):62-75.
[3] "Protect Yourself and Your Family from Sepsis," CDC, accessed February 1, 2018, https://www.cdc.gov/sepsis/pdfs/Consumer_fact-sheet_protect-yourself-and-your-family_508.pdf
[4] Derek C Angus and Tom van der Poll, "Severe Sepsis and Septic Shock," New England Journal of Medicine 369 (2013):840-51.
[5] "Protect Yourself."
[6] Angus and van der Poll, "Severe Sepsis."
[7] Andrew Rhodes et al.,"Surviving Sepsis Campaign: International Guideline for Managing Severe Sepsis and Septic Shock: 2016," Critical Care Medicine 45 no. 3 (2017):486-552. https://journals.lww.com/ccmjournal/Fulltext/2017/03000/Surviving_Sepsis_Campaign___International.15.aspx