Loriann’s Story

In February of 1993, I was a typical college student.  My only worries were upcoming mid-terms, papers due, and what the plans were for the weekend.  That all changed on February 6, 1993. It was a snowy Saturday in New York City, and I decided to head to the store before the snow got worse.  I was walking across the street and fell, dislocating my ankle, fracturing my fibula, and causing two other fractures of my ankle.  I was rushed to the Emergency Room by ambulance. I was told by the ER doctors that I needed surgery the next day to repair the fibula.  I was assigned the house orthopedic surgeon, and my parents were assured by the nurse he was a great doctor.

On February 7, 1993, I went into surgery for repair of the damage.  I had a plate and screws placed on the fibula.  When I woke up from surgery, my family and I were told that everything went great.  I would only miss that semester of school.  That night I started to run a fever.  The fever continued over the next few days.  I was told that was normal, and maybe I was coming down with a cold.  On the fourth day of a 103 degree fever, my mother asked the doctors if they could run a CBC blood test.  She was told it wasn’t necessary.  On the 5th day, the doctors ordered Tylenol every 2 hours, and the minute the fever went down, they discharged me.

My fevers continued at home.  When my mother called the doctor’s office, she was told that this was normal.  My cast was on for 8 weeks, and over the 8 week period, I continued to run a fever off and on. In April of 1993, my cast was removed, and I was told to start walking and physical therapy.  I continued to have extreme pain, swelling, and fevers.  I again told my doctor of this at my next appointment, and I was told by him I was being a “BIG BABY.”  I then decided to go for a second opinion.

In June of 1993, I went for a second opinion, and the new doctor ordered x-rays.  We were all shocked to see the new x-rays — a 3 inch section of my fibula was gone, and the plate and screws were hanging by a thread.  I was then sent for a battery of scans, x-rays, and tests.  I was told I had osteomyelitis, an infection of the bone which ate away at the fibula.  If my doctor would have run a simple CBC blood test, which was covered by my insurance, I could have been treated with antibiotics and would have been fine.

Nineteen years later, I have had 15 surgeries on my foot and ankle, including a total ankle fusion.  I also have nerve damage and am in constant pain requiring numerous pic lines and courses of antibiotics.  For me, this cycle never seems to end.  All I can do is encourage others to seek second and third opinions until you get the answers you need.  Take someone with you to doctor’s appointments, ask questions, and don’t be afraid to speak up.  I sometimes wonder if I did these things, would my outcome have been different.  I hope so.

Wendy’s Story

A Medication Error and Subsequent Systems Failure Result in the Loss of a Precious Newborn

Meredith was born full term on 9/16/09. She was a surprise since I was 43 (at time of conception) and all attempts to become pregnant had failed since our son was born 5 years previous. In April/May of 2009, we learned that Meredith had a heart defect that was common in babies with Down syndrome, and then that was confirmed via amniocentesis. I struggled so much with this diagnosis, until she was born. Then it no longer mattered.

Meredith had complications from the start, more so than is typical under these circumstances. She was in the NICU for 21 days. She was cared for beautifully. Most of the reason she was kept so long was because of feeding
issues- she didn’t eat enough so was fed primarily through a feeding tube.
It was imperative that she eat to grow strong and big so that she could have her heart surgery. Finally they taught my husband and I how to feed her through a tube so that we could bring her home. Which we did on her 3 week birthday.

Two days later at her first Pediatrician appt, she was found to have a high fever. I was told with infants under 2 months, they have to go to the hospital with such a fever. We could not return to our original hospital because they don’t have isolation rooms in the NICU- we had to go to a different one within the same system.  Once there, the pediatric cardiologist examined Meredith and put her on 2 heart medications to help her heart pump stronger. She would have needed heart medication at some point anyway before her surgery- this was just early.

The day after her readmission, I spent about 6 hours with Meredith. I fed
her- she did great without the feeding tube! I was excited. We snuggled and napped together. I left around 4:30pm feeling hopeful- her fever was lower, she had color back in her skin and she ate pretty well. Around 7pm, I received a call saying that my daughter was in critical condition and that we better get down there. They wouldn’t let us anywhere near her room at first, said they were working on her but their faces said it all. No one could tell us why her heart had slowed down/stopped. It was not expected even with her heart defect. We held her as she grew gradually colder. My heart broke into a million pieces. I loved her so very much.

The day after her death, we were called by a NICU doctor who said they were releasing her body to the county Medical Examiner rather than the funeral home because they suspected that she had been given too much of one of the heart medications and it had to be determined whether this caused her death.
It was confirmed 2 days following her death that she had been given 2-3x the amount of Digoxin she was intended to have. The attending doctor rewrote the cardiologists prescription, adding “/kg”, but not reducing the amount.

Further, all systems in place to catch these errors failed- in the pharmacy and nursing. My baby girl, our longed for and much prayed for second child, should be alive. My broken heart exploded again.

Allison’s Story

A Communication Breakdown Results in a Surgery Not Being Done

My name is Allison, and I have experienced medical errors during two surgeries.  This is the story of the second.

I was scheduled for two procedures, a myomectomy and tubal ligation.  During the informed consent process, done by a nurse, I noticed that the tubal ligation procedure wasn’t listed on the consent form.  I talked to the nurse about it.  The nurse thought that the tubal ligation would be covered by consent form language which stated that the surgeon may perform other procedures he deems necessary.   I wasn’t comfortable with that, and added the tubal ligation to the list of procedures that the surgeon would perform on the form.  I also emailed the physician about it, along with some questions about the surgery that the nurse was not able to answer.  He got the email and called me one evening before the operation.  We went through my questions, but didn’t talk about the tubal ligation.  I was in bed when he called, and didn’t have the email in front of me to remind me to clarify the procedures with him.

A week later, in the pre-op room, I checked with the circulator nurse to make sure that the surgeon had signed the informed consent document, with the corrected procedures.  I told her that I wasn’t sure that he remembered about the tubal ligation.  We checked and he had signed it, and she took me off to surgery.

The day after the surgery the resident who had worked with my surgeon came to see me.  When I asked her about the tubal ligation, she didn’t know what I was talking about, but it had not been done.  She said that the circulator nurse had said something about me “wanting to have my ovaries tacked somewhere”.  I was so upset.  I had epidural anesthesia and had been awake for the operation, listening to music.  It would have only taken a second to check the consent form or ask me to clarify what my expectations were.

Later that day, my surgeon came to see me.  He also had no idea what I was talking about.  The conversation did not go well.  I could not convince him that he had made a mistake.  He left my room very flustered, and it was obvious that he was very distressed.  I thought that he would check the paperwork and get back to me about what we would do about the tubal ligation after he had collected himself.

However, I did not see or hear from him.  I thought that he needed some time.  One week went by, and then two.  I had been told by his office to see him three weeks post op, but I decided not to make the appointment.  I was angry and confused about why he didn’t follow up.  The last time I had seen him he was angry.  It didn’t seem like a good idea to go in for an appointment which would include an intimate examination with the two of us in that state.

A bright spot is that three weeks after the surgery I contacted the hospital’s complaint line and left a message telling them what had happened.
About 30 minutes later the CEO of the hospital called me back and apologized!  You could have knocked me over with a feather.  It was the only apology I had gotten so far, and it meant a lot.

I did not hear from the surgeon for three months.  I thought about contacting him, but I was wary.  I could not understand how a physician could have a patient tell him that he forgot procedure, and even then not check the informed consent form, or investigate but not apologize and help me.  When he did contact me, he did not admit his error.  I decided to meet with him, and he did then apologize, but mostly assigned blame to other people such as the nurses and me.

I feel so defeated by this.  After my first medical error, I have been so careful.  I did my best to “speak up” in writing, in person, via email, yet to no avail.

However, I believe that my experience could help physicians avoid this kind of error because there is documentation that shows exactly where and how the communication process derailed.

Susan’s Story

A Nurse Finds Herself on the Other Side as the Patient

In December of 2006, I found a small lump behind my ear lobe.  I consulted a plastic surgeon because, being a nurse, I know that they do surgery on small areas around the head and neck.  Dr. Grey was a plastic surgeon at the hospital where I worked whom I knew casually.  He had a great reputation – all his patients loved him.  I went in for an appointment and was given a local anesthetic, but Dr. Grey was unable to remove the entire mass.  He was able to get enough tissue to send off to pathology.  A week later when I got the stitches out, the report came back, and it didn’t rule out spindle cell.  The recommendation was for a complete excision – they needed to clear the margins.  It was at this point that I began to freak out.  All I could think was “Get it out – just get it out!!!”

Day surgery was scheduled for just after Christmas.  I was a bit worried – I had been on the internet and read about some scary things about spindle cell.    That morning I was brought to main OR at the hospital where I work.  One of my three grown daughters was with me, but she wasn’t allowed to stay in the pre-op. A good friend who is also a nurse stayed with me because that is what we do for each other.  Dr. Grey came in and marked on my right side.  He asked “Do you want me to tell you about any complications?”  I didn’t want to hear it – I kept thinking “just get it out.”  Anesthesia came in and made the decision to do a general.  Someone held my hand while I went to sleep – the OR nurse — and this meant a lot to me.  I told my daughters that it would be about an hour long surgery, and I’d be home by noon.  My daughter, Maddie, was in the waiting room.  There was no support person in there that day – this is done on a volunteer basis, and it is not always staffed.

I woke up at 1 pm (the procedure began at 8) with a horrible headache.  The nurse said “If you smile, I’ll give you an ice chip.”  I was very tired and not really connecting.  No one said that the surgery went well or that I was doing ok.  I had forgotten that my daughter had been in the waiting room the entire time.  No one came out to my family during the surgery.  My daughter was sitting there waiting for some news, and no one ever came out to her.  She was watching everyone get their news, and no one was speaking with her.  My other daughter, who is a nurse, sensed that something was wrong and came over to the hospital.  People at work were starting to get worried, too – they knew that it was just taking too long.

The recovery room experience is what brings on the anger for me and my family.  Dr. Grey finally came out – he told my daughters it had taken longer, was more involved, and he was being careful.  He told them that my smile was shifted, and he hoped it was temporary.  Maddie said that all the color seemed to drain from his face.
The nurse brought me out into the main hallway from Recovery – my daughters, girlfriend, and grandson were there, and everyone was crying.  Now I knew something was really wrong.  My 5 year old grandson was sticking his finger into the side of his cheek and pulling it down (sort of like a fish hook).  My family later told me that they didn’t feel at all prepared for what they saw.

I was transferred to Day Recovery, and, when I tried to drink a cup of ginger ale, it poured all over me.  This was when I realized that I couldn’t drink.  The nurse said that I probably needed another nap.  The entire time, I was thinking – Where’s Dr. Grey?  I questioned whether or not I should be going home.  The nurse called Dr. Grey’s office and said “Susan feels she can’t go home.”  That’s when I felt I had FAILED.   “Susan feels she can’t go home.”  It was put on me.  I was then admitted very quickly.  I was taken to the general elevator where people were gawking at me – people I work with were horrified; others were just trying to be polite.

By that evening, my daughters and friends were with me, and they were very, very angry.  Dr. Grey came in.  He felt I would be ok – it was probably some swelling.  He said that he saw the facial nerve and that he did not cut it.  Later that evening a young nurse on the 3 to 11 sat on my bed, looked at me, and said “Do you know what happened to you?”  She was the first one to talk about the elephant in the room.
The next morning Dr. Grey came in, and I asked if I could go home.  I had seen myself in the mirror with a friend, and it was unimaginable.  The entire side of my face was drooping, and my eyelid would not close.  He said I could go home and didn’t talk about the eye.  I asked if I should have a neuro consult, and he said that while I didn’t need it, I could if I wanted.  The neurologist came in later in the day.  The ombudsperson came in to talk with my daughter about the waiting room issue.  Neuro couldn’t offer anything.  They didn’t feel that I had had a stroke and felt that I needed to wait until the swelling went down.  They didn’t mention the eye either.  I went home that day – the day after surgery.

I was lucky to get two spoonfuls of anything in my mouth.  I was drooling a lot, and I slept most of the day.  Despite the pain meds, I had an awful headache.  On Friday, Dr. Grey called to check in.  He spoke with my daughter who told him that I was frustrated because I couldn’t eat.  By the time I woke up, it was after 5, and I didn’t want to bother him by calling.   By Saturday morning at 1 am, I awoke with the worst headache I have ever had in my life.  I was desperate enough with the pain to call Dr. Grey at this ungodly hour.  He told me I could take 2 pain meds.  “You’re going to be ok, Susan,” he assured.  At 8 am, I told my daughters to take me to the ER.  I was scared and kept wondering whether I was having a stroke.  It turned out that I had a dry cornea.  I was given IV meds and fluids and was made comfortable.  I went to CT scan to make sure I didn’t have a stroke.  I spent 8 hours in the ER, but I was comfortable and felt safe.  I didn’t have to eat or drink any more.

The eye doctor diagnosed corneal dryness because my eyelid wouldn’t come down, and I had to be readmitted for four days for hydration and pain control.  I was surrounded by people who cared for me but just didn’t know what to do.  I am single and self-supporting, so I began to stress about how and when I could go back to work.  My grandson was so upset by my appearance that he wouldn’t come back to see me.
On Monday night, Dr. Grey came in to see me.  He hadn’t known that I had been readmitted.  He told me that the tumor results were negative.  He sat with me while I cried my eyes out.  I just kept asking him if I was going to be ok.  I saw him again when he came in to remove my stitches.  Speech and Swallow came in and helped me with eating and drinking.

I went to see a facial neurosurgeon at Mass. Eye and Ear.  Dr. Grey and my primary care physician had called and advocated for me.  They got my appointment moved up since my original appointment was not until March.  She was very upbeat – Dr. Grey had spoken with her.  She was very hopeful that I would get some, if not all, movement and sensation back.  She didn’t want to operate – just wanted to wait.  She was very supportive of Dr. Grey and explained to my daughter that sometimes these things just happen.

Somehow, in all of this, I knew that both the patient and physician struggle when something goes wrong.  Because I am a nurse, I know firsthand how care providers are also deeply affected.  I wanted to change the system, not through anger and litigation, but through awareness and education.  Risk Management at my hospital gave me the MITSS DVD, and that was the first time that I realized that there was something out there for me.  It was amazing to witness two people openly talking about what I was experiencing.  Now, a year later, I still have facial paralysis and lots of emotional ups and downs.  But, Dr. Grey and I are working together to get through this.

I have been asked what would I change and what could have been better:

  1. Dr. Grey would have cancelled his office hours and stayed after my surgery once the facial palsy surfaced.  He would have been available to talk with me about what had happened once the anesthesia wore off.
  2. Nursing could have called to get support to my daughter left alone and isolated in the waiting room, long past time.
  3. My daughters also needed support once they knew that things didn’t go quite as planned.   There should have been a quieter, more private area provided for them to take it all in.
  4. Everything needed to stop once a problem was detected – people needed to take it in.  I couldn’t eat or drink, my face was drooping, my eyelid wouldn’t close, and I still would have been sent home if I didn’t ask.  No one asked “Would you like me to call Dr. Grey?”

The physical trauma of what happened to me was bad.  But it was what happened after my injury that changed my life mentally, physically, and spiritually. I felt I was a good clinician.  Now, I’m an even better one.  No one was there for me.  It’s affected some of my work.  I want clinicians to know what a difference they can make in the emotional well-being of their patients.

Jane L. Martin’s Story

“A Patient’s Testimonial”

At the beginning point of this journey the very thought of discussing the trauma I had experienced felt entirely beyond my capabilities.  My survivalist’s instinct was to tuck the entire ordeal neatly into a far corner of my mind; or better yet to pretend it didn’t happen at all.  Soon though it became apparent that that approach wasn’t working. Daily functioning became an overwhelming task.  The harder I tried to forget, the more daunting everything became.  Every aspect of my fairly predictable life was now a thing of the past.  How was I going to deal with a world that was so foreign to me?

At the urging of my primary care physician I sought counseling as a way to attempt to put some order back in my life.  I attended the first counseling session enthusiastically.  I was looking forward to being instructed on exactly what steps I needed to take in order to regain control in my downward spiral.  I guess I thought that somewhere there was a manual, that listed steps 1-10, sitting on the counselor’s shelf just waiting for this particular patient to use.  Surely all I had to do was follow these “golden rules of recovery” and all would be well. Unfortunately, my expectations of counseling were as unrealistic as the world I was forced to live in daily.  It became apparent all too quickly that my foolproof method of recovery would require a lot more hard work than I had planned on.  After weeks of some emotionally charged days and nights I finally felt I was making some real progress. Dealing with the grief, anger and betrayal associated with the loss of my unborn baby at the hands of a medical community I had been taught to trust was a painstaking task, but one I had made some positive strides in addressing.  I discontinued the therapy sessions some months later.

Still there were some long-term issues of which I couldn’t quite understand or put my finger on.  Frequent terrifying nightmares, checking numerous times to make sure all the windows and doors were securely locked, freezing at the sound of an ambulance siren and avoidance had all become deeply ingrained.  These constant fears pushed me to seek out additional resources to help me to recapture the person I had once been.  Perhaps the biggest fear that motivated me was that I did not know the person I was becoming.

I began counseling anew with a therapist that by chance, and much to my good fortune had specific training in trauma.  She helped and encouraged me to take control of the roller coaster that up until this point I had felt was my destiny.  I gained the knowledge that I could again be in control of my future; I just needed to take the positives I did possess and work with them in the context of the trauma.  The fear of being emotionally hurt again was a large factor in what had been holding me back from making any forward progress with the long-term issues.  After some time I came to learn that I had already been to the worst place in my life that I ever imagined possible; there was no worse place to fear.

After having dealt somewhat with the emotional fallout of my trauma I felt the next step was to somehow connect with others who had experienced a similar situation.  I began to seek out some additional resources that dealt specifically with medically induced trauma. My quest began by contacting Senator Moore’s office and requesting information about the Betsy Lehman Center.  I was told that the Lehman project had had the funding cut and was not operational.  I was then referred to Paula Griswold at the Massachusetts Coalition for the Prevention of Medical Errors.  During a lengthy conversation with Paula she informed me about a group called MITSS, and gave me Linda Kenney’s phone number.  My conversation with Linda was the first time I had actually talked with anyone who had also dealt with medical trauma.  I knew immediately that becoming involved with MITSS was the next logical step to take in my recovery.  Not only had Linda offered a compassionate ear, but also for the first time in the past year and a half, I was convinced that someone really understood what it felt like to undergo such an ordeal.  I was very excited to be “interviewed” for the support group that was being started, and desperately hoped that I would be a good fit for the group, and likewise that the group would be a good fit for me.

After the first group meeting I instantly felt a bond with each and every person in that room, unlike any I had known before.  Those bonds only continued to strengthen as we went around the table and 4 other women shared their heart rendering experiences.  I received a special gift that night and at each of the following 5 meetings.  That gift was validation.  What I found was that the emotions I had experienced were a common thread we all shared – maybe not exactly in the same way, but just as deeply.  Through the materials and knowledge that Jean Bellows so carefully shared I slowly came to know that all of the emotions and feelings that follow such as loss and/or trauma were all normal things to have felt.  Some were in fact the bodies healthy way of coping with an overwhelming experience such as we all had had.  I gained a better understanding of the sequelae inherent in Post Traumatic Stress Disorder and the profound effects it had on both my conscious and unconscious being.  Education was provided that explained the hows and why’s of the physiological processes that occur when someone deals with trauma.  She explained ways to make situations that feel uncomfortable more bearable and not so out of our control or helpless feeling.  Everyone listened to each other in a non-judgmental, empathetic way.   The ability to trust was an issue that I had continually struggled with.  Again, I quickly came to find this just wasn’t something I had to worry about within this group.  We were all in the same boat just with different oars by our sides.

Our conversations at the Tuesday night meetings encouraged and strengthened my conviction to continue the same dialogue at home.  I felt empowered to talk more openly about my trauma with my husband.  I had never fully understood his reactions or better yet how he was able to let it go so seemingly easily after he got over the initial shock.  This had never been an easy topic of conversation to discuss with him as we both approached our grief from very different directions.  That piece kept coming up time and time again and was a very painful part that up until that time was never adequately explored.  I believed he “just didn’t get it.”  He thought, “Why isn’t she getting over this.”  What came to light after our talk was something very different and came from a prospective that I had never been attuned to.  To my husband, after witnessing my being rushed to the hospital by ambulance with Advanced Life Support, being told he could not ride with me, not being given any answers when he reached the hospital, and then the worry of recovering from emergency surgery – he experienced a tremendous sense of relief and was just thankful that I was alive.  To him that was the most traumatic part of our experience and when that aspect was over and he knew I would recover well physically he went on with his life.  I was finally able to understand why he had reacted the way he did to our loss – something I so desperately needed to know.  Being able to understand his position felt like a huge weight had been lifted from my shoulders.

Many more pieces came together for me through this support group not only through the camaraderie and encouragement, but through a deeper understanding of what Post Traumatic Stress Disorder entails, and helpful ways in which to further climb out from under it’s frightening grip.

I consider my being included in this group a godsend that helped me further along in my road to recovery.  I don’t know where the next step will take me, but I hope someday soon to be able to reach out to others who are dealing with the painful aspects of Medically Induced Trauma so they too know they are not alone.  I can truthfully say and feel now, with conviction, that “I will never forget, but I need not always remember”.

Lisa Wattley’s Story

A Patient’s Story

It’s Halloween Day, 2003. A mom dresses her two boys, ages 9 months and 3, in their costumes for a visit to Grandpa, who is in the hospital due to recent exploratory surgery. As the family enters the room, 2 hospital staff members, both with masks and gloves, are assisting Grandpa. Mom wonders aloud why the staff has masks on but receives no answer. Meanwhile, the staff makes comments about how cute the grandchildren are and Grandpa seems pleased to see his boys.

Later that night, Mom receives one of those phone calls you hear about in magazine stories – one of those calls that change everything. Nana is on the line saying that Grandpa has something contagious called MRSA and that Mom should probably wash her hands after she visits with Grandpa in the future.

That mom, of course, was me. My name is Lisa Wattley and I live with my husband and two sons in Plantatation, Florida, just west of Fort Lauderdale. Grandpa was my father, William Cosentino. The episode above marked the beginning of a long and as of yet incomplete journey into the shadowy world of patient safety and infection control. I say shadowy because that’s how patient safety appears to me – some nebulous, secretive issue that is often dismissed by both the medical profession, patients and their loved ones.

To continue with our story, I spent several frantic hours that evening trying to find out about MRSA in the hopes that my two sons were safe. A nurse friend, who refused to give specifics about what MRSA could do, suggested that I call my pediatrician. The hospital nurse assigned to my father that evening also would give me little information. She did mention a small sign posted the window of my father’s room. Hadn’t we seen that?

I did eventually get the information I needed. MRSA is short for Methicillin-resistant Staphylococcus Aureus. This bacteria is sometimes called a super bug because of it’s resistance to certain types of antibiotics. Highly contagious, it can be transmitted on clothing, medical and other equipment, and can live outside the body for three hours. If this bacteria, which can remain on the skin without causing harm, somehow travels into a patient’s body (such as through a catheter or other tube), it can lead to such complications as pneumonia, blood poisoning, and bone infections. Although many healthcare providers point out that MRSA is usually only a danger to patients with a weakened immune system, MRSA has been known to infect infants, healthy adults, and even NFL football players. According to the Centers for Disease Control information sheet on MRSA for healthcare workers, “The main mode of transmission of MRSA is via hands (especially health care workers’ hands) which may become contaminated by contact with a) colonized or infected patients, b) colonized or infected body sites of the personnel themselves, or c) devices, items, or environmental surfaces contaminated with body fluids containing MRSA.”

In other words, a patient is infected with MRSA most often because healthcare workers do not wash their hands when they are supposed to.

As for our family, MRSA had a devastating impact. The surgery, my father had before our fateful Halloween visit, revealed lung cancer. Our plan was to have our father at home, surrounded by those he loved, enjoying his Dunkin’ Donuts and his boxing on tv with as much comfort and love until the cancer took him from us. Instead, MRSA led to pneumonia, which led to the use of a ventilator, a tracheotomy, and a gastric feeding tube. My father never again got to hold any of his grandchildren on his lap as he sat in his recliner. He never saw his own home again. On December 21, 2003, our family made the decision to end life support for my father. The cause of death on the certificate read cancer.

Throughout the two months between my father’s initial diagnosis with MRSA and his death, I repeatedly requested information from the hospital staff without satisfactory results. I could not get beyond the cursory hand patting. “No, there was not a forum to share my experiences. We’re going to do some training in a few months. Yes, it’s tough getting staff to wash their hands.” I also observed the staff caring for my father using varying levels of infection precautions. (That’s “med speak” for what you wear and what you do to prevent carrying infection with you to other patients. Gloves, masks, hand washing would be included.) Some staff came in looking like they are from the set of that movie, “Andromeda Strain.” Others were bare handed and some even drew blood without gloves.

The information I learned on my own about infection precautions was a bit of a shock to say the least. Here are a few tidbits:
Healthcare providers only wash their hands about 50% of the time
Doctors are worse at this than nurses
It’s cheaper to prevent infections than to treat them
80,000 people die annually in the US from hospital acquired infections
Most states do not require hospitals to report infection rates

Armed with this information and what I learned on my own about MRSA, I wrote a letter to the hospital infection control specialist and copied it to the hospital board of directors, state department of health,and (JACAHO) Joint Commission on Accreditation of Healthcare Organization, which accredits the hospital.

Two days later I was called by the chief nursing officer from the hospital and a meeting was scheduled during which our experiences were reviewed. The hospital did not deny what occurred. A committee was formed to revolutionize the hand hygiene practices and mindset of the staff. (Hand hygiene is more “med speak” for cleaning your hands). This was no small project. We have been working nearing two years on what I consider to be progressive changes. I was even invited to video tape a message detailing my father’s case so that employee’s could hear from an actual victim.

I would so much like to report that things have changed, that the day to day practices of the hospital system that allowed my father to contract his infection have changed. Sadly, we recently had a family member enter the same hospital. When visiting her, I was dismayed (okay, stunned is a better word). Why didn’t healthcare workers wash their hands consistently (even after I repeatedly spoke with the charge nurses)? Where were the patient information brochures on hand washing? Where was the language in the admission papers that clearly informed the patient of her right to have all staff wash their hands? And finally, sadly, was my two years of work with the hospital in vain?

As I write this, I am awaiting a meeting with the original hospital staff regarding these issues.

I was privileged to speak with Linda Kenney recently. Thanks to hearing her shared experiences in attempting institutional change in the hospital, I was able to sleep again. (Have two years of heart wrenching work invalidated sometime and see how you cope.) Linda Kenney encouraged me to continue to work for change in the culture of the hospital in an effect to prevent future pain and grief for patients and their families.

In closing, I would like to express my gratitude to Linda and MITSS for being a sane, rational voice for patients and their family. Who said, the longest journey begins with a single step… Thanks to Linda, I am continuing this journey. With help from God and an understanding family, I hope to be able to look back on this time as one that I hope would make my father proud.