Pushing Back

PUSHING BACK

BY Kerry O’Connell

When the doctor told me that my dislocated elbow and fractured radial head would take 6 weeks to heal after surgery I sighed in relief, I would still be able to ski that year. Never in my wildest dreams did I imagine that it would take 8 surgeries over 2 years costing $250,000 to get my arm back to 80% of normal. Modern medicine is an unforgiving science, you only get one chance to fix people right. In 2004 I was a completely naïve, trusting, patient, who went where the doctor said to go, signed anything that they put under my nose, and most of all never questioned treatment that my providers suggested. Not much unlike the vast majority of Americans who grew up expecting that medical marvels could fix anything that we can break. Had my first doctor positioned his drill an inch further up I would still be that overly trusting soul. Life isn’t always that simple.
My doctor’s errant drill wrapped my radial nerve around the drill bit pureeing the wiring for 13 of my arm muscles into mush and launching my 2 year ordeal in our health system. As compared to some surgical mishaps walking around with a limp arm is not that bad, at least it didn’t hurt. In those 2 very long years I had a crash course in surgical errors, billing errors, Hospital acquired infections and the strange, strange world of orthopedics.

My advice to those who find themselves in similar dilemmas:

1. Document every single word your Doctor says.

2. Research your condition thoroughly, use the resources at your local teaching hospital library their   computers will get you into websites reserved for doctors.

3. Ask all of your questions in writing. Send your Doctor your questions via Email a few days before each appointment. Bring a hard copy with you and ask him to add it to your medical record, insist on written answers.

4. It he suggests a treatment plan ask for the clinical studies that show this treatment works.

5. Always obtain a second or third opinion.

6. Always triple check every drug that they give you to be sure it is the right patient, right dose and right time.

7. If you have been harmed  insist on meeting with the CEO of that organization. Lower level managers have no authority to make compensation decisions, talking to them is a waste of time.

8. Figure out what you want and request it in writing. If you are shy they will ignore you.

9. Find other patients who have survived your condition, they are invaluable for advice and empathy.

10. Never ever give up hope. This will be one of the greatest learning experiences of your life.

Our Healthcare System is cold and indifferent because we patients allow them to be that way. The only way that they will ever improve is if patients stand up and demand to be treated humanely. A few months ago I met a guy who broke his leg skiing and wound up with a deep Staph Infection. His broken leg will take 3 years and $1.5 million dollars to fix, Pray for the best outcome but plan for the worst.

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Two arms Two Choices

As Paul Harvey would say the “Rest of my Story”

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Lifelong Infection Prevention

Thousands of patients sign surgical consent forms every day, briefly glancing over three little words “Risk of Infection” without a second thought. My friend Shaun was attending college on a full ride football scholarship in 1983 when he learned the true meaning of those three little words. Shaun tore some minor cartilage in his right knee that required a scope job to repair. He elected to do the procedure over the Christmas break at a hospital where his mother was the vice president in charge of nursing. The surgery at first seemed to go very well, but a week later he noticed grey leakage from his knee incision. Two days after that, he could not bend his knee. By the following morning it had become septic and Shaun was rushed back to the hospital. It was the beginning of a grueling six-week hospital ordeal that progressed to osteomylitis that was eventually killed by six months of IV antibiotics.

Shaun was fortunate: they managed to avoid amputation but the infection damaged so much bone and tissue that he walked with a limp and could no longer ride a bicycle. His football career was over. One would think that having a very important mother on your side would lead to immediate discovery of what caused this tragedy. The staff tested every object and every person in the operating room and never did find the source of the bacteria. The clinical best guess was that a dye injection for an x-ray the day before surgery may have been the problem.

Shaun suffered with a very stiff knee with very little range of motion for six more years. In 1989 he found a US ski team doctor who cleaned up the damaged bone and scar tissue enough that he could jog and ride a bike. In 2005 he was letting his kids ride his ankle like a horse when the weakened knee fell apart. This time repairs were out of the question and a full artificial knee was installed. Shaun knew what I had gone through the year before and elected to have full decolonization therapy before his knee replacement to reduce the risk of another infection. It may have been one of the factors in his successful knee replacement, but sadly he developed a staph lesion on his nose after the operation that required more IV antibiotics.

Two years later, his good left knee developed a cyst that required surgery to remove. Again Shaun prepared for surgery by going through two weeks of decolonization therapy. This time the surgeon avoided an infection but nicked the bursa in his knee which required yet another surgery in an ambulatory surgery center to repair. This minor repair caused Shaun’s third staph infection. Unfortunately, the PICC line that was installed to administer antibiotics caused a blood clot which put him back in the hospital. The damage to his left knee from his third infection led to a partial left knee replacement in late 2007.

Shaun’s right knee now has a plastic button that has come loose and is putting pressure on his nerve. Like me, Shaun is very fearful of going back into operating rooms of any kind until the problems associated with infection prevention are brought under control. Perhaps Irish guys like Shaun and me should be contraindicated from having surgery.

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Numerators

Five years ago this summer while under deep anesthesia for arm surgery number 3, I drifted above the line and joined the group called Numerators. I awoke with a Hospital Acquired Infection. Numerators are the most diverse minority group on earth. Our members include every race, every creed, every color. Some are very old, sadly some are only days old. Numerators have lost a lot to join this group. Many have lost organs, and some have lost all their limbs; all have many kinds of scars from their journey. It was not our choice to leave the world of Denominators (those at risk of getting a health care acquired infection) and many will struggle the rest of their lives to understand why.

Today Denominator docs argue with Denominator bureaucrats on whether 70% of us have suffered needlessly. All too often they blame us for being too dirty, too unhealthy, too wounded. We Numerators are a great embarrassment to both groups; thus they passionately count the successful Denominators but struggle daily to count us. There are lots of silly rules for not counting some infected souls as if by not counting us we might not exist. The Denominator world created a huge computer network called NHSN (Center for Disease Control and Prevention’s (CDC) National Healthcare Safety Network) requiring thousands of man-hours to run yet they still can’t find most of our Numerator members. Numerators that are identified are then divided by the Denominators to create a nameless, faceless, mysteriously small number called infection rates. “Rates,” like their cousin “odds,” claim to portray hope while predicting doom for some of us. Denominators are in love with rates, for no matter how many Numerators they have sired, someone else has sired more. Rates soothe the Denominator conscience and allow them to sleep peacefully at night. Recently, rates have even evolved into sadistic SIRs (CDC’s Standardized Infection Ratio) which ruthlessly sanction how many unlucky souls it is acceptable to infect each year.

As large as our Numerator group is, we are still plagued with great loneliness as Denominators do their best to make sure we don’t talk to each other. The Denominators created an act called HIPAA to protect the Numerators but somehow it became a means to steal our names and faces, preventing the world from knowing that we exist. Numerators have no organization, no colored ribbons, no walks, and no marathons. Our knights are few and far away. Our nightmare is devalued from disease to a mere “complication,” an event not even worthy of a simple apology. Yet as I travel the state of Colorado speaking, one third of all Denominators I meet have a family member or close friend who has become a Numerator.

Upon our initiation into the group, Numerators have only two real choices: either a slow painful death, or hand over your life’s savings for treatment. Sadly, some hand over their money and still endure a slow painful death. Numerators cope with the full physical, emotional, and financial burden of infections on their own. As tough as it is to be a Numerator, it is far worse to be a Denominator whose loved one has joined our ranks and suffered a slow painful death.

Numerators don’t ask for much from the world. We ask that Denominators look behind the numbers to see the people, to love us, count us, respect our suffering, and help keep us out of bankruptcy, for once we were Denominators just like you. Our greatest dream is that you find the daily strength to truly care. To care enough to follow the checklists, to care enough to wash your hands, to care enough to only use virgin needles, for the saddest day for all Numerators is when another unsuspecting Denominator rises above the line to join our group.

Kerry O’Connell, June 2010

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Patient Empowerment in Infection Prevention

Steps that I took prior to Surgery Number 8:

  1. Attended a Colorado Patient Safety Coalition meeting in hopes of finding comparative infection rates for Hospitals.  Result: No information was available.
  2. Read all the current guidelines from SHEA, APIC, and CDC.  Result: Good knowledge and considerable increase in fear.
  3. Met with my surgeon and demanded a prescription for decolonization therapy.  Result: Surgeon recommended an infectious disease doctor who put me on a decolonization program two weeks prior to surgery. I used chlorhexidine shampoo, mupirocine in my nose, and oral antibiotics.
  4. Took vitamin E for three months prior to surgery.  Result: ??
  5. Requested an 8:00 AM surgery time.  Result: Ignored.
  6. Got a really short haircut and shaved my upper body with clippers two weeks prior to surgery.
  7. Increased sleep from 7 hours/night to 9 hours/night.  Result: Got very hard to sleep the night before.
  8. Prayed constantly.  Result: Worked.
  9. Negotiated with surgeon to include vancomycin as the prophylactic antibiotic, full air-supplied suits for the surgical team, no shaving, double gloves.  Result: Doctor did all but the suits.
  10. Wrote, “Please, please, don’t infect me,” across the doctor’s informed consent form.  Result: Surgery team chanted, “Let’s get it right this time,” on the way to the OR.
  11. Post-op doctor put me in a private room (probably to keep me from talking to other patients).  Result: Big bill ($900) to fight about.
  12. Continued taking vitamins and avoided taking showers until stitches were removed.

But the ultimate question remains. If a patient insists on treatment that his doctor disagrees with, is he guilty of practicing medicine on himself? If something still goes wrong, who is the responsible: the doctor or the patient?

There is a very interesting medical term called “conservative treatment,” generally defined as the plan that uses the very least amount of medicine to create the highest probability of a good outcome. Doctors don’t always choose the conservative approach. Sometimes they choose the most expedient plan, the most profitable plan, or the really new high-tech plan that they are dying to try out. One question a patient should always ask multiple doctors is, “What is the most conservative treatment plan for this condition?” They may not agree with each other but you will gain a great deal of knowledge on the range of options available.

Kerry O’Connell

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Infection Extinction

Since surviving a tough battle with MRSE in the fall of 2005, about a third of my waking thoughts are consumed with the question of how do you win the war with the invisible enemy called bacteria. I have a bookcase full of textbooks, studies, recommendations, and evidence-based science. The experts all agree that there are no easy answers, no miracle cures, no silver bullets. I helped pass the infection reporting law in Colorado but have come to believe that we cannot write laws that are detailed enough, flexible enough, or tough enough to win this war.

In the past two decades we have witnessed the corporate takeover of healthcare. Interestingly, corporations are very much like bacteria. Both exist for the sole purpose of growth and survival. The means for corporate survival has always been and will always be profitability. While some will deny this fact, and others will spend their lives trying to get corporations to act morally, the truth is that profits will always take precedence over quality of care. Consider the two things that you will never hear come out of a healthcare CEO’s mouth:

  1. We made too much money this year!
  2. We lost money this year but that is acceptable because we didn’t harm any patients!

The plan to win the war is simple. Make infection prevention highly profitable. Currently this nation spends about $4 billion dollars a year treating two million infections which at 7% profit equates to about $280 million dollars a year in healthcare profits. Most experts would agree that if we spent that same $4 billion a year on prevention measures, infections would be nearly extinct. The problem is that neither insurance companies nor CMS would pay for $4 billion in prevention measures; thus the resulting $8 billion dollar swing from revenue to overhead would bankrupt a lot of providers.

My solution is to quit paying providers an average of $2,000 per patient to treat the unlucky souls that get infected, and instead give them a $25 bonus for every patient they don’t infect. They then get $5 billion in revenue but now it is distributed to the providers with the best rates instead of going to the facilities with the worst rates. Infections will become extremely hazardous to the bottom line. Corporate healthcare, like bacteria, will quickly adapt, morph, and change into mean, clean, bacteria-killing machines. The providers that I have proposed this to have an interesting response: “But would we have to share the bonus with the doctors?” Again the profit-centered culture. The right answer is “Yes, of course,” as doctors (especially surgeons) are integral to stopping infections.

No one will argue that hospitals are grossly understaffed in infection control, that screening takes money, and that isolation wings cost big money. Give them the funds to fight the war effectively and quit rewarding them for failures!

Kerry O’Connell   4/14/08

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The Consequences of a Hospital-Acquired Infection

Hospital:

Added revenue from additional treatment $25,000 to $250,000
Added profit from additional treatment $1,750 to $17,500
Patient census goes up five to 20 patient days
Added work for infectious disease doctors and lab specialists
Slim chance of a hit on a public report in 27 states for a few procedures
Greatly added revenue for pharmacy
Might cause a move from a two-patient room to a private room (usually compensated)

Staff:

Possible guilt feelings for an individual or team
Usually don’t know who caused infection
Usually don’t know which patients received an infection
Not recorded in any performance reviews
No change in compensation
Major headache for infection control professionals

Patient:

Significant chance of death
Significant chance of permanent disability
Full emotional burden
Full physical burden
Full financial cost (sometimes bankruptcy)
Highly likely loss of workdays
Haunted by fear of recurrence
Greatly increased chance of infection in future surgeries

Consequences are one of the few events in life that, depending on context, will produce either action or apathy. Healthcare is learning that one of the side effects of infections is an ever growing, extremely passionate family of infection victims and survivors who will no longer accept infections as an inevitable cost of treatment.

Kerry O’Connell, 2011

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