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A Daughter's Story

In August of 2005, late at night after getting up to use the bathroom, my Dad tripped and fell down the stairs.        

A visit to the nearest emergency room led to a diagnosis of a sprained neck, and instructions to rest at home. A couple of days later Dad’s pain remained so great we took him to Rhode Island Hospital, where another X-Ray confirmed a broken neck. It was something of a miracle, we learned, my Dad could actually walk around and function. Surgery was scheduled for the next day.

As a one-time medical reporter for a local TV station, I had faith in the folks at Rhode Island Hospital. As Dad’s only daughter, I also wanted to keep a close eye on his care.

My Dad, Bob Stegeman, with our son, Nick.

None of us realized we were beginning a six-month odyssey of odds-defying triumphs and depressing setbacks. A relentless cascade of medical complications continued to drain my Dad’s vigor and energy. During that time, new and awkward-sounding words like “MRSA” (potentially deadly bacteria) and “C-diff” (another one) gained starring roles in my burgeoning medical vocabulary.

It all ended on a snowy day in February of 2006 in the same hospital, when the machines Dad was hooked up to couldn’t help him anymore. A nurse had checked on him in the early hours of the morning, and found him barely conscious, his breathing shallow.

It was surreal. Just the day before, Dad had told me about his hopes to drive a car again. And now I was watching him die.

We buried my Dad. We gathered as a family, tried to move on. I wrote a letter to the president of Rhode Island Hospital commending the caring, compassionate and professional staff that had cared for Dad throughout his ordeal, and fought for him on his final day.

But it didn’t make sense. What had happened to this once-robust 76-year-old man? How could a surgery and recovery expected to take ten days end like this?

What I’ve learned since then, about the world of hospitals and infections and cleaning standards (or lack thereof), took me from bewilderment, to horror, to action.

It also scares me to death.

Hospital Infection – America’s Fourth Largest Killer

Often when I went to visit Dad, there would be a sign outside his door saying “Use Contact Precautions”. The sign was posted next to a cart bearing stacks of folded paper or cloth gowns, and a box of disposable gloves. A bin nearby contained the discarded cast-offs. Every person entering the room would have to first don a gown and gloves, to limit the spread of whatever bacteria Dad had tested positive for. Often it was MRSA; a few times it was C-diff. At that point, to me these were just odd-sounding names for something I couldn’t see and which didn’t seem particularly debilitating, relative to all my father’s other problems.

As the saying goes, I didn’t know what I didn’t know.

The killer bacteria known as MRSA (methicillin-resistant staphylococcus aureus) has been a growing problem for years, especially in hospitals and nursing homes. The “R” –  for “Resistant” – distinguishes it as a strain of staph most antibiotics can’t kill. In fact it’s our own over-use of antibiotics that’s taught these resilient organisms how to mutate quickly – quick enough to stay ahead of most antibiotic weapons in the arsenal churned out by drug companies.

You may recall in late October 2007 a spate of stories about deadly MRSA jumping into our schools, locker rooms and other community facilities. MRSA infections killed students in Virginia and Brooklyn, as well as a special education teacher in Maryland. From Kentucky to New York, California to Connecticut, elementary schools to colleges, stores were stripped of antiseptic cleaning supplies as affected schools raced to clean and disinfect classrooms. These events renewed calls for more aggressive government action to help prevent the spread of the "super bug" bacteria called MRSA.

MRSA is common and relatively harmless when it’s in the nose or on the skin. If it gets into a little scrape in the skin, it can produce what looks like a spider bite or an ingrown hair. Such sores may not even require antibiotics to heal. But when MRSA travels more than skin deep, it can be deadly and difficult to stop with current medicines.           

Despite this recent rash of cases in communities (called “Community-Acquired”, or “CA”-MRSA) across the country, the threat from MRSA is greatest — and often starts — in health care settings. This is called “HA” – or “Hospital-Acquired” MRSA. Medical settings are where 85% of the infections occur, according to a recent landmark study in The Journal of the American Medical Association. This study shows infections acquired in hospitals are the fourth largest killer in America. Every year in this country, some two million patients contract infections in hospitals, and an estimated 103,000 die as a result. That’s as many deaths as from AIDS, breast cancer, and auto accidents combined. HA infections also add an estimated $30.5 billion to the nation's hospital costs each year…an average cost of over fifteen thousand dollars per infection (www.hospitalinfection.org)

MRSA is a tough little killer. The bacteria multiply every 20 minutes. They can live for weeks on blood pressure cuffs, medical device cables, privacy curtains, bed rails or a doctor's white lab coat. They’re easily picked up on the hands or sleeves and deposited on another surface…or person.

The CDC points out there are five Cs that are the contributors to MRSA: Crowding, frequent skin-to-skin Contact, Compromised skin (such as cuts or abrasions), Contaminated items and surfaces, and lack of Cleanliness.

There’s a lot we can do to minimize the latter two, such as vigorous and consistent hand hygiene, but we often don’t. Neither, in many cases, do hospitals.

I learned all this in the months after my father died. 

Going into Battle

Imagine facing the most physically risky event of your life. You prepare by taking these steps: surrender your watch, jewelry, contact lenses, eyeglasses, car keys, wallet and any hearing aids or false teeth. Give up your clothes, including your underwear. Take off your shoes. Put on a thin cotton Johnny. Put on a plastic ID bracelet so a succession of people you mostly don’t know can check to see who you are. Now allow this succession of strangers to touch you, stick needles and IV’s in you, and maybe cut you with sharp instruments. This is how my Dad went into surgery, and it’s the same drill for most of us. We trust in our doctors, and by association, those that assist them in caring for us. The vast majority of these people are (in my experience) extremely caring, committed professionals, doing extraordinary work in health care settings fraught with reimbursement problems, insurance pressures, dwindling budgets, lean staffing and increased mandates which can be burdensome.

Bottom line, though, we trust that hospitals are clean and safe, the best place for us to get healthy again. But if you do a little research, you’ll find you owe it to yourself to ask questions.

Hospitals are Dirty 

I learned a lot by visiting www.hospitalinfection.org, which posts a vast and frightening collection of data. Some of it is shared here:

“First, no one inspects hospitals for cleanliness, or mandates that they be cleaned at all. Though restaurants and cruise ships are subjected to these inspections, hospitals, even operating rooms, are exempt. The Joint Commission (JCAHO), which inspects and accredits U.S. hospitals, doesn't measure cleanliness. Neither do most state health departments, nor the federal Centers for Disease Control and Prevention.

According to new data presented in April of 2007 at the annual meeting of the Society for Healthcare Epidemiology of America:

• Boston University researchers who examined 49 operating rooms found that more than half of the objects that should have been disinfected were overlooked.
• A study of patient rooms in 20 hospitals in Connecticut, Massachusetts, and Washington, D.C., found that more than half the surfaces that should have been cleaned for new patients were left dirty.

A new University of Maryland study shows

• 65 percent of physicians and other medical professionals admitted they hadn't washed their lab coat in at least a week, even though they knew it was dirty.
• Nearly 16 percent said they hadn't put on a clean lab coat in at least a month. Lab coats become covered in bacteria when doctors lean over the bedsides of patients who carry the organisms. Days later the bacteria are still alive, repeatedly contaminating doctors' hands and being carried to other patients.
• A 2004 study of doctors' neckties at a New York hospital found nearly half of them carried at least one species of infectious microbe. (Beginning in 2008, in a move to control the spread of hospital-acquired infections, the UK passed a new hospital dress code banning the wearing of lab coats, long sleeves, neckties, fake nails and jewelry).

Hospitals once tested surfaces for bacteria, but in 1970, the CDC and the American Hospital Association advised them to stop, saying testing was unnecessary and not cost effective. MRSA infections since then have increased 32–fold, and numerous studies have linked unclean hospital equipment and rooms to infections.

The CDC and other organizations urge caregivers to clean their hands between patients, and even advise patients to speak up and request that caregivers have clean hands. But as long as hospitals are inadequately cleaned, doctors' and nurses' hands will be re-contaminated seconds after they’re washed—when they touch a medical chart, open a supply closet, pull open a privacy curtain, or contact other bacteria–laden surfaces. In a recent Johns Hopkins Hospital study, 26 percent of supply cabinets were contaminated with MRSA and 21 percent with another stubborn germ, Vancomycin-resistant Enterococcus (VRE).

Stethoscopes, blood pressure cuffs, and EKG wires are used on successive patients without being cleaned. Studies published as long ago as 1978 warn that blood pressure cuffs frequently carry live bacteria, including MRSA, and are a source of infection. At a hospital in Galveston,Texas, where a burn patient became infected with VRE, molecular typing traced the bacteria to an unclean EKG wire. The VRE on the wire had been left behind by a patient discharged 38 days earlier.

In a newly released British report, one third of blood pressure cuffs were found to be contaminated with Clostridium difficile often called “C-diff”, a germ that can cause lethal diarrhea if it enters via the mouth. It's a short trip from a cuff to a patient's bare arm, then to the fingertips and into the mouth. According to the Centers for Disease Control and Prevention, each year in the United States C. difficile is responsible for tens of thousands of cases of diarrhea and at least 5,000 deaths. And the problem is getting worse. The number of C. difficile infections doubled between 1993 and 2003, with most of the increase coming after 2000.”

Again, when my father first entered the hospital, I didn’t know any of this. 

One Thing After Another 

My Dad greeted me the day of his hospital admission in good spirits. Thank God the gravity of his injury had been discovered in time. The surgery would be delicate, but the prognosis for getting back to a normal life was good. He could probably go home after a week’s recovery.

Except…he had a low-grade fever. He needed several days on antibiotics before surgery.

When it finally took place, the operation to fuse my Dad’s neck vertebrae went well. But while Dad was still recovering in the ICU, I noticed his abdomen under the sheet was distended and hard. I asked the attending nurse to please tell the doctor.

The next day, in the step-down ICU, Dad had a procedure to ease the pressure on his intestines. But just after I left him, he was rushed back into the OR.

His intestines had ruptured.

My Dad underwent emergency surgery during which part of his colon was removed. In day-long vigils by his bedside I counted eleven IV lines snaking fluids and drugs into his prone and bloated body, helping him fight the likelihood of sepsis and shock. I stared at his waxen face behind the breathing tube and thought about Dad grinning ear-to-ear, sitting in the audience at all my ballet recitals when I was a little girl. I thought about the days we drove around the high school parking lot in the wheezy little Fiat Dad could ill-afford but bought me anyway, bucking and stalling as he taught me how to drive a stick shift. I thought about how we couldn’t have family gathering where we’d start dinner together – because Dad had to first get out the video camera and make sure the occasion was recorded. I thought about the times people who worked with my father would approach me in the grocery store, or parking lot, and tell me how proud he was of his daughter on TV.

I asked Dad’s surgeon and other doctors what had caused my father’s colon to burst.

They said they just didn’t know.

Meantime my brothers arranged to fly into town, having been told it might be time to say goodbye.

But amazingly, and despite the guarded prognosis of his doctors, Dad eventually opened his eyes. Days later the breathing tube came out, and Dad could talk again. I knew he’d be OK when he started complaining about the hospital food.

“What would you like, Dad?” I asked.

“Chocolate ice cream!” he grinned.

But between two surgeries and long days on a respirator, my father had become weak as a kitten. He couldn’t stand or walk. He’d gone from 175 to 137 pounds. He suffered an outbreak of a painful skin rash diagnosed as Shingles (a cousin to the Chicken Pox virus that emerges under stress). And he frequently tested positive for the presence of MRSA and C-diff. He needed to gain weight and be infection-free before he could be transferred to the rehab hospital, where the hope was he’d gain enough strength to go home. 

The Dirtiest of the Dirty 

It was in October, two months after Dad’s fall down the stairs, that I read a disturbing news story about germs in hospitals. According to research by Dr. Chuck Gerba, a microbiology professor at the University of Arizona, “TV remotes tend to convey more harmful microbes than toilet-bowl handles, bathroom doors or call buttons, among other hospital-room items.” MRSA was among the harmful bacteria found on these remote controls. Gerba detected, on average, 320 different types of bacteria on TV remotes, compared to an average 91 in the rooms in general. Sites tested included hand rails, call buttons, tray tables, door knobs -- both in and out -- faucet handles and flush handles.

I lifted my eyes from the article in my newspaper and looked at my Dad, who was dozing in his hospital bed. I spotted the TV remote (combined with the call button) resting near his hand. The gadget was never in the same place twice. It ended up falling off the pillow, or tucked under his covers, and I’d seen it drop on the floor a few times.

Also, virtually everybody that came into the room handled it.

Of course it would be dirty. With all those little buttons, and delicate electronics, it would be tough to clean (though I hadn’t seen anyone cleaning it, or his bedrails, or the doorknobs, come to think of it).

I mentioned this study to some of the staff that came into the room. Shouldn’t there be some kind of cover for the TV remote? There was dismay when I shared the study results, but no answers.

I filed the thought away. We worked at getting Dad into rehab, then home. Ultimately we had two weeks to move my parents out of their house of more than 40 years and into a hastily-purchased handicapped-accessible condo.

It was an intense and emotional time, but we were elated when Dad, shuffling along uncertainly on his walker, came home for Thanksgiving. He was also with us for two family birthdays, and for Christmas. It seemed like the worst was behind us.

In January he re-entered the hospital. His colostomy was causing him a lot of trouble, and he was having surgery to reverse it.

This time, he never left the hospital. 

An Offer of Help 

All of us handle grief differently. Prior to my Dad’s illness I’d been consumed by my work on a philanthropic project. But now I threw myself into finding some meaning and purpose to what my Dad had gone through. Maybe some good could come out of it.

I researched hospital remote controls and searched exhaustively on-line for evidence of a simple cover available for hospitals…something cheap and disposable. If the remote was the dirtiest thing in the hospital room, maybe I could find a product and encourage RI Hospital to use it. But there was no product available for the larger, tethered (wire attached) hospital remotes.

Someone, I thought, should make one. I decided that someone should be me.

Within a month of my Dad’s death I’d made a prototype of the cover. I found a medical products design and marketing company and agreed to hand over my research and samples.

Meantime I met with Dr. Joseph Amaral, then-President of Rhode Island Hospital. We’d talked before, when I’d covered medical stories. I shared my research and showed him my cover prototype. He said the concept was ridiculously simple…and that intuitively you knew it had to work,

Dr. Amaral referred me to the hospital’s director of infection control. I had a great meeting with this woman, during which I offered to have the cover manufactured at my own expense. I told her I’d be willing to donate the covers to see if they helped curb infections at the hospital, and to find out whether staff and patients liked them. She thanked me for coming and said she had to talk it over with a colleague.

I followed up, but never heard back from her. Later I learned there was no interest because the remote covers “were not mandated by CDC guidelines,” and “there’s no way to measure whether it’s effective.”

I hoped my medical device marketing partners, with their vast experience and many contacts in the field, would have greater success. But they eventually gave up too. “Hospitals don’t want to add the expense”, they said.

Expense? Pennies a day to change a disposable cover, versus an average of fifteen-thousand dollars in additional hospital costs per infection? It seemed I’d been naïve about how things worked.

But I was also “stubborn Dutch”, like my Dad.

A New Plan, a New Insight 

During my research, a doctor friend recently pointed out MRSA was getting the headlines – but I shouldn’t underestimate the emerging danger of C-diff infections in hospitals. “Antibiotics can cure it,” he said. “But a new strain has emerged that works very fast. It can release toxins in the colon quickly enough to be fatal.”

I revisited C-diff on the internet. The Mayo Clinic points out risk factors include people who:

• Are taking or have recently taken antibiotics.
• Are 65 years of age or older.
• Have a serious underlying illness or weakened immune system.
• Are or have recently been hospitalized

All of these had applied to my Dad. Then I found this memo from the Rhode Island Health Department to “all Rhode Island licensed physicians”, dated February 28, 2007:

“…We are sending this advisory due to the emergence of a new strain of C. difficile -associated disease causing hospital outbreaks in several states (including CT, NY and MA), which has been reported by the Centers for Disease Control and Prevention (CDC) at scientific meetings. Over the past 3-4 years, several states have reported increased rates of C. difficile- associated disease, noting more severe disease (with complications such as perforation, shock, and increased rates of colectomy) and an associated increase in mortality. The new epidemic strain (PFGE type BI/NAP1, also called ribotype 027) appears to be more virulent, with the ability to produce greater quantities of toxins A and B.”

Was this what had caused my Dad’s colon to burst, launching the cascade of debilitating setbacks? A chill went through me as I realized I may have found the answer to what ultimately killed him.

But even if my Dad suffered a perforated colon due to a virulent C-diff infection, he was not among those reported to have had an infection at all. He wouldn’t even have been a statistic. At the time, Rhode Island was among the states that don’t report hospital infection rates (though we worked successfully to change the law. Rhode Island’s Hospital Infection Reporting bill was signed by Governor Don Carcieri July 1, 2008). 

What now? 

Odds are each of us will one day be a hospital patient…or visit a loved one who is. I wish I could stop each of you in the hospital parking lot on your way in the door. I wish I could impress upon you your responsibility—to your own health—to be proactive in keeping things clean. I wish you would politely insist that everyone who touches you uses proper hand hygiene. I hope the person cleaning your room will wipe down your tray table and bedrails with antiseptic, and clean your remote control. But I’m sad to say there’s no guarantee.

I want your hospital stay to be safe, and the standard of care as hygiene-conscious as you expect it to be.

I want you to go home to your family again.