I just returned from the Mid-Atlantic Researchers Conference (MARC) at George Mason University in Fairfax, Virginia. The conference is an annual gathering of people from my “day job”, fundraising research. I have attended and presented workshops at MARC many times over the years and always enjoyed it.

This year was a bit different. Last month, an I published an article in Connections, the journal of the Association of Professional Researchers for Advancement (APRA), which is the professional association that organizes MARC. The article, which I will be sharing excerpts from on here in the near future, was about how my career in fundraising research helped us to start the Peggy Lillis Memorial Foundation. Since the article was published pretty recently, I thought I might get some congratulatory comments from conference attendees that head read the piece, but that would be the end of it.

I wasn’t prepared for two of the women at the conference to come up to me and “out” themselves as C. diff survivors.

The first woman was involved in the planning of the conference and she approached me as I was getting ready for my presentation (which was completely unrelated to C. diff or the foundation). She told me that she had hesitated to bring it up since she was afraid discussing my mother would upset me right before my presentation. I told her I love talking about my mother, no matter the circumstances. That’s when she told me that following a surgery a few years ago, she came down with C. diff. Though she was sick for a few weeks she did recover. This woman is in her 30s and otherwise healthy. Not the “typical” C. diff patient.

The second woman attended my presentation. While giving the audience a brief overview of my career, I mentioned the foundation. Later, we both ended up in a group that went to dinner together. This woman sat next to me and during dinner she told me that she got C. diff after giving birth to her first child. She told me that she was extremely sick for 5 months and was misdiagnosed at first. Her OBGYN didn’t think it was related to her giving birth and her primary physician thought it was IBS. Ultimately, she lost more than 25 pounds and spent the her first few months as a new mother desperately ill. She thanked me for the foundation’s work and said she will probably send us her full story to help build awareness.

I am struck by the fact that at a conference of 200 people, 2 young women, who were otherwise healthy, both had fought C. diff. It makes me wonder how many others are out there – undiagnosed, misdiagnosed and suffering, possibly dying because of old stereotypes and the dearth of knowledge among the public.

Friday morning I had the privilege of presenting the 3rd Annual Peggy Lillis School Spirit Awards to four awesome kids during the PS 198 Kindergarten Graduation.

Despite the 100 degree heat in the auditorium, the parents and students were very excited to celebrate and I was delighted to be on hand to hand out the awards to the four recipients. According to their teachers, each of them embodied the commitment to service and community that Mom was known for as a teacher.

While attending the graduation inevitably makes me sad because it’s a reminder that Mom won’t be teaching more students, the hectic energy of being in a room of 100 5-year-olds and a bunch of Kindergarten teachers managing them, also makes me feel closer to her.

Two years and 2 months after losing Mom, seeing the commitment that the PS 198 Principal, Joy-Ann Morgan, and Mom’s colleagues have to keeping her memory alive and honoring her love for her students through this award, continues to inspire me to continue our work to fight C. diff and warms my heart knowing that we have so many wonderful friends keeping their love for Mom alive.

At its heart, The Peggy Lillis Memorial Foundation is an educational enterprise. Not only because the public is in desperate need of greater understanding related to C. diff, but also because to her core Mom was an educator.

She taught me and Liam to love each other even when we were fighting. She taught us to prize our friends and family and keep them close to us even when they were screwing up. She taught us to stand up and fight back when we see an injustice.

Those are the great lessons she taught us and that we teach others through the foundation’s work. So take a minute now, and share some information about C. diff with your friends and loved ones.

By clicking on the link below, you can let people know about the C. diff and the foundation through email, by posting a link to Facebook or tweeting about us.

Help Fight C. diff. Spread the Word!

Despite the common wisdom of most doctors and patients that clostridium difficile is primarily a threat to elderly, hospitalized people, recent studies indicate that not only are cases of “community-onset” C. diff growing but they are more likely to result in surgery and other serious complications.

In April, the Infection Control and Hospital Epidemiology journal published a study from the Centers for Disease Control, that found people who developed a C. diff Infection outside of the hospital setting were four times more likely to require a colectomy (surgical removal of the colon) than those who developed symptoms while hospitalized. And people 65 or older are at even higher risk.

People in the community, including those living in nursing homes or recently treated in physicians offices, were previously thought to be at low risk for C. diff.  The CDC study showed that up to 75% of all C. diff infections show up in community settings.

The combination of increased infection rates and a larger percentage of people becoming symptomatic outside of a hospital speaks to the growing trend and severity.

While the study doesn’t speculate as to the reasons why community-onset cases more frequently lead to colectomy, from my own experience, I suspect the following reasons:

• Unlike MRSA and pnuemonia, the public is largely ignorant to both the existence and danger of clostridium difficile infections.
• Therefore, people who become symptomatic outside of the hospital are likely to assume that their symptoms (diarrhea, fever) are the result of a virus or food poisoning and delay treatment.
• Many physicians and healthcare providers working outside of hospital settings hold outdated notions of what a “C. diff patient” looks like (i.e. elderly, hospitalized, immuno-suppressed) and, therefore, miss the tell-tale signs.
• Finally, there is a new, hypervirulent strain of C. diff that has emerged wherein the toxins produced by the bacteria are much stronger and cause great damage to the patient more rapidly than older strains.

To protect yourself and your loved ones, keep in mind that C. diff symptoms can appear long after your last hospitalization, visit to a nursing home, or doctor’s office. Remain vigilant for C. diff symptoms in anyone who has recently been in a hospital or healthcare setting, particularly if they are taking or have recently taken antibiotics.

You can read more here:

Vital Signs: Preventing Clostridium difficile Infections.  (free registration required)

Community onset Clostridium difficile linked to higher risk of surgery

Helen Haskell

Since the CDC released its latest and, at 14,000 the highest, annual estimate of the number of people killed by clostridium difficile infections, numbers have been on my mind a lot. In future posts I will address in more depth why I doubt the accuracy of even this extraordinary number of lives lost. Suffice it to say for the moment that i suspect this number is just the tip of the iceberg in terms of lives lost.

For now, I want to turn your attention to an article from my fellow patient advocate, Helen Haskell. Helen found her way into patient advocacy following the death of 12-year-old son, Lewis, from numerous medical errors. I met Helen through the Consumers Union Safe Patient Project last fall.

In person, she’s a very unassuming woman from South Carolina with a slight accent and quiet (at least by New York standards) speaking voice. But that persona belies her incredible passion and a activist spirit. Since Lewis’ death, Helen has founded Mothers Against Medical Error, lobbied to pass patient safety legislation in South Carolina and succeeded in passing the Lewis Blackman Hospital Safety Act in memory of her son.

Helen’s piece is an important call for more widespread studies of the scale and variety of patient harm and death.

Please read and share it.

How We Err When Counting the Casualties of Medical Care

Since joining the Consumers Union Safe Patient Project, I have had the pleasure of meeting and getting to know a number of amazing patient advocates. By and large, those who enter the world of patient advocacy come from

two groups: people who lost a loved one as the result of a medical error, negligence, hospital-acquired-infection, etc., and advocate on behalf of the person they lost, and people who were themselves harmed but survived and are able to advocate to prevent others from suffering as they did and are.

Martha Deed belongs to the former group. Martha is a psychologist who lost her daughter, Millie, in November 2009 to a series of medical errors that compounded her existing autoimmune syndrome: Behcet’s disease. I first met Martha at a convening of patient safety advocates in Yonkers last October. Since then we have also worked together as part of North East Voices for Error Reduction (NEVER), a regional collective of patient advocates from Northeast states.

I recently read a piece that Martha wrote for Patient Safety Insight, the magazine of American Society of Professionals in Patient Safety, “Connecting the Dots: From Family Advocacy to Patient Safety in the Hospital“. I like the article for a number of reasons. First, Martha shares the uncertainty that many of us feel in doing this work. As anyone who has visited a hospital knows, the American healthcare system is incredibly complex, and many of us who come to work in patient advocacy do not have formal training. Second, Martha shares the fear and confusion anyone might feel in trying to advocate for their family member. Finally, Martha shares her hard-earned wisdom  on how to be an effective advocate for your loved one.

I encourage you to read the piece in its entirety, but at a minimum. please take time to review the following tips from Martha:

Before hospitalization occurs:

1. Family members can make themselves familiar with the hospital they are most likely to use by looking up their local hospitals on their state health department website. States vary regarding information they make public. Helpful information includes the record of citations and corrective actions that have been taken against the hospital by the Department of Health. Even if the entries are not current, the citation record can alert family members to potential hazards in the hospital.

2. Look up results of patient satisfaction surveys for the hospital. Check for infection rates, medical errors, and mortality and failure to rescue rates as reported by such websites as Hospital Compare
(http://www.hospitalcompare.hhs.gov)

3. Especially if you have a family member with chronic illness, read a good book on patient safety, so that you do not find yourself trying to learn about patient advocacy under fire. The Empowered Patient by Dr. Julia Hallisy (theempoweredpatient.com) is almost encyclopedic in scope and practical detail. While it may not be feasible to do everything that Dr. Hallisy recommends, it is very helpful to become aware of the pitfalls and steps she suggests.

Often, however, the hospitalization comes as a surprise and a shock. Under those conditions, it is difficult to operate at one’s best.

1. Read the hospital’s orientation material carefully. Find out who is in charge of your loved one’s case. Be present for rounds by that physician.

2. Make sure that others are available to visit and comfort the patient if you are engaged in advocacy.

3. Have someone stay with the patient as close to 24/7 as possible, because problems can occur day or night. Do not attempt to do it all by yourself.

4. Get some rest yourself so that you can remain helpful and clear thinking.

5. Keep a log, so you do not lose track of what is happening with your family member’s care. Include notes of any contact with medical staff. Write your notes as soon as feasible after a conversation. This step can go far in preventing misunderstandings as well as mistakes.

6. The hospital will likely wish the patient or family to designate a single contact person. However, the contact person (you, the patient advocate) can benefit if you have someone with whom to discuss patient’s treatment. This back-up person ideally should know the patient well and be someone the patient trusts. The back-up can assist the family advocate with keeping focused, identifying communication or treatment gaps. If this person has had previous advocacy experience at that hospital, it can be a bonus. The back-up can be a relative, friend, clergy, or any other person who is informed about the workings of the local medical community.

7. Always, no matter what, remain polite. This is true even though you should not hesitate to go right up the hospital hierarchy if you sense an emergency. 

I came across Pastor Vic on Twitter where he was sharing the story of his recent battle with C. diff. The Pastor was sick for 10 days before he finally reached out to his doctor who urged him to go to the emergency room. Luckily, Pastor Vic did recover and is back working with church.

After reading his story on the pastor’s blog, I reached out to him and asked if we could use it on the foundation website. I’m happy to say that he agreed.

I’m particularly pleased because his is only the second story we have from a man who fought C. diff. Despite the fact that men and women are diagnosed with C. diff on a roughly equal basis, the men who have reached out to the foundation have been more reticent to share. That’s in keeping with the general trend of men being more circumspect about sharing information about their health.

Even if you’re not religious, I think you’ll enjoy Pastor Vic’s perspective on C. diff and how he links the need for better hygiene to old Biblical tales. If you are a Christian, you can also check out his weekly sermon blog: Monday Mornings with Pastor Vic.

As always please tweet, Facebook or otherwise share this the pastor’s story with your friends to help us raise awareness.

Now, on to Pastor Vic’s story:

Pastor Vic

Monday’s Wall Street Journal had an excellent article showcasing how Hunterdon Medical Center in New Jersey has made enormous strides in controlling clostridium difficile and other healthcare associated infections.

It’s definitely worth reading the whole article, but I want to highlight just how successful Hunterdon has been. From 2006 to 2011, the hospital:

• Cut its rate of C. diff infections by 79%
• Reduced MRSA by 66%, and
• Dropped its vancomycin-resistant enterococci (VRE) rate by 23% last year

This is great progress that is undoubtedly saving hundreds of patients from needless suffering and even death.

These gains are not the result of luck but of concerted effort and investment by Hunterdon:

Prompting Hunterdon to overhaul its methods was a growing threat from a strong strain of C. diff in 2004. At highest risk for C. diff are patients, especially older adults, who are on antibiotics for other infections. The drugs destroy good germs that protect against infection for several months, during which time patients can get sick from C. diff picked up from contaminated surfaces or spread from a health-care provider’s hands.

The hospital began isolating patients who had contracted C. diff and asked doctors to restrict the use of the antibiotic Cipro. But it was becoming clear that spores could survive for weeks, even on a doorknob. Alcohol-based hand sanitizers didn’t kill C. diff, and hand-washing wasn’t sufficient.

So the hospital adopted new, stronger soaps containing the antiseptic chlorhexidine for staffers and patients. Cleaning crews began using bleach and a more potent form of hydrogen peroxide. Rooms were scrubbed as never before: In rooms where C. diff patients had been treated, even the curtains were taken down and cleaned.

Ms. Nash coaches cleaning staff on the importance of disinfecting “high-touch” surfaces on which germs can linger. One current focus: the remote control devices whose buttons allow patients to watch TV or call a nurse. Cleaning staff are encouraged to speak up if they feel they are being rushed to clean a room.

The visual checks traditionally done to confirm a room was clean “are no longer sufficient,” says Ms. Roye-Horn.

The Hunterdon team conducts random audits with the swabbing device on about 300 surfaces a month. Some 95% to 100% of checks get a passing grade, up from 75% when the hospital acquired the device in 2009.

Effectively combating healthcare associated infections costs money. In addition to hiring additional staff, including more cleaners, Hunterdon has spent hundreds of thousands of dollars over the past 5 years to upgrade its infection surveillance and control technology. Given than the average extended stay or readmission for an infection like C. diff can cost over $30,000, investing in prevention is increasingly seen as cost-effective.

What Hunterdon proves more than anything, is that change is possible. That smart investment in staff, training and upgraded infrastructure to monitor and prevent healthcare associated infections can stave off needless pain, suffering, and even death. And those of us who have lost someone to an HAI know you can’t put a price on that.

Behind One Hospital’s Fight Against Deadly Infection, Wall Street Journal