Two weeks ago I got an email from a woman named Starr, who wanted to share the story of her mother’s death from Clostridium difficile (C. diff) a few weeks ago. Perhaps because Starr’s mother, Teresa Mustain, age 57 when she died, was only slightly older than our mother, who died at 56, I was particularly touched and saddened when I read her story.

But Teresa’s story also speaks to a range of problems in our healthcare system, some related to C. diff and some not. She battled C. diff and a range of chronic conditions from being overweight to being diabetic for more than 18 months. Teresa was treated by Metronidazole for several months before being put on Vancomycin. She was subjected to three surgical procedures in the last weeks of her life. Her children are still unclear as to the exact causes of their mother’s physical decline in the last year and a half of her life.

Teresa’s story also touches on how ill-equipped and unprepared a subset of Americans are when it comes to monitoring and engaging in their own healthcare, particularly when it comes to preventing, managing and reversing chronic conditions, many of which leave us more susceptible to C. diff and a host of other opportunistic infections.

C. diff Story: Teresa Mustain

Please read and share Teresa’s story with your network. There’s much we can each learn from it and in taking those lessons prevent her death from being in vain.

Christian

Chris and I spent the past two days in Washington, DC at the first-ever Selling Sickness: People Before Profits conference organized by patient safety activist Kim Witzcak and anti-medicalization academic Leonore Tiefer. In

Christian with “Selling Sickness” co-organizer Kim Witzcak

short, the conference was amazing and a bit overwhelming. The amazing part was seeing the huge number of activists, academics, physicians, journalists, and healthcare workers come together to take on the extreme dysfunction in the United States healthcare system. The overwhelming part was seeing the extent to which our healthcare system is broken and rather than healing us is too often causing more harm than good.

We are taught by our culture and the media to believe that the US healthcare system is the best in the world, the doctors are as infallible as the Catholic Pope, and that if we submit ourselves to its ministrations, we will be given a pill, a procedure or a device that will “fix” us. Sadly, for a host of reasons, our healthcare system is failing far too many Americans – subjecting us to an epidemic of over-treatment, bad science and costing the US more in dollars than any other post-industrial country while delivering, in many cases, worse outcomes.

Because we are so reliant on the healthcare system, most of us do not want to face how deeply flawed it is, particularly when we or a loved one is ill and vulnerable. Moreover, nearly everyone of us knows people who work in healthcare. We have uncles who are MRI techs, sisters who are nurses, brothers-in-law who are doctors, friends who are pharmaceutical salesmen. The vast majority of them are good, moral people who go to work every day wanting to help the sick and suffering but the corruption in our system hobbles our best intentions.

Since I can’t possibly do justice to the entire conference in this blog post, I want to share a few highlights of the people we met and stories we heard. The conference organizers will be making session materials available next month and we will post a link to them then.

• Dr. John Abramson of Harvard moderated an eye-opening roundtable of researchers and scientists critiquing the way new drugs are approved by the Food and Drug Administration. About 85% of all drug clinical trials are now funded by the companies that developed the drug. This is an obvious conflict of interest made worse by the fact that 45% of the funding for the FDA comes from the fees companies pay to have their drugs, devices and procedures approved. In real terms, this leads to drugs and devices that are ineffective and/or harmful being marketed to doctors and hospitals who are often ignorant to the truth behind the false advertising claims made by the manufacturers. Check out Dr. Abramson’s book, “Overdosed America”, for the full scoop on the dangers in our current approval process.

• I met Allan Jones, a former health investigator in Texas, who blew the whistle on state employees who were getting kickbacks from the drug industry to promote expensive antipsychotic drugs to foster children and other wards of the state. For his trouble, Jones was fired, but kept on working until Johnson & Johnson was forced to settle the case for $158 million. In talking with Jones, he told me that he had just recovered from a four-month battle with a clostridium difficile infection that nearly killed him.

• The “From Grief to Action” panel hit home for me. It featured Helen Haskell of Mothers Against Medical Error, who lost her 15-year-old son Lewis in 2000; Dan Walters, whose wife suffered terrible injuries to her heart when an intern was allowed to perform a new surgery unbeknownst to them; Sara Bostock, whose daughter committed suicide while on an SSRI; and John Fratti, a former pharmaceutical sales rep who suffered neurological damage from using the antibiotic Levaquin. Author Rosemary Gibson moderated the panel. While each of their stories is unbelievably painful to hear, they have all made amazing contributions to advancing patient safety in their own way. Helen has passed Lewis Blackman Hospital Safety Act in 2005 in her home state of South Carolina, among her many accomplishments. Sara was pivotal in creating a website, SSRIStories.com that compiles the harm caused by antidepressants. Dan published an excellent book, “Collateral Damage”, that details how his wife was harmed. John created a blog, Levaquin Hurts, and even purchased stock in Johnson & Johnson so he could tell his story at the company’s shareholder meetings. The most touching moment for me came when Rosemary asked the panel how they manage to keep doing this work after so many years. Helen simply replied that she couldn’t stop if she wanted to; losing her son was so painful that advocacy was a necessary reaction (and distraction) to her own grief and suffering.

• During the “Hijacking Patient Empowerment” session,  Rosemary Gibson gave a stirring presentation that highlighted the similarities between the mortgage crisis that blew up the world economy in 2008 and the current crisis in healthcare in terms of harm caused, lack of transparency and inflated costs, that should worry every American.

• Our good friends, Patty Skolnik and Pat Mastors, held a great session on building allies among doctors, administrators, politicians, executives in order to effect change within the system in addition to exerting pressure from outside the system.

There were many other amazing panels, sessions and people that we met during the conference. I’m proud that The Peggy Lillis Memorial Foundation was a co-sponsor of Selling Sickness and look forward to keeping all our supporters informed about the great things that result from it.

The amount of time and money spent detecting C. diff and other healthcare associated infections is an obstacle to prompt treatment. This smart (and very cute) video shows that dogs could very well be the answer to detection. In the Netherlands, a team has trained a beagle named Cliff to sniff out C. diff among patients even hours after their last bowel movement.

Peggy was a dog lover through and through. I imagine seeing this little guy work brings her joy.

Last Tuesday, I had the great privilege of being part of an all-day meeting on eliminating hospital acquired infections (HAIs), including clostridium difficile (C. diff) at the Centers for Disease Control in Atlanta. The meeting was arranged by the CDC in partnership with Consumers Union’s Safe Patient Project, of which the Peggy Lillis Memorial Foundation is a member. It brought together several patient safety activists and more than 20 CDC experts including several senior staff members, including Dr. Denise Cardo, head of Health Quality Promotion, and Dr. Cliff McDonald, Chief of the Prevention and Response Branch of Health Quality Promotion and the CDC’s leading expert on C. diff.

I’m still processing all the information we learned and all the ways that the foundation can work with the CDC. But I left Atlanta full of incredible hope and extremely proud of all the hard work we’ve done to get us to this point. Sitting next to Dr. McDonald and listening to an amazing coterie of experts, each of whom had incredible passion for eliminating HAIs, was both humbling and inspiring.

Perhaps the most energizing aspect of the meeting was seeing how upset the CDC staff were by the growth in death and harm caused by HAIs. Many doctors who work for the CDC  came to it before the modern patient safety movement, most often spurred on by the failure of the institutions where they worked to reduce avoidable harm. Some were frustrated by the fact that HAIs are a largely preventable problem and the primary reasons we haven’t eliminated them is not lack of knowledge but of  resources, particularly financial resources, and the political will to insist that the healthcare industry do better. One staff member became visibly angry when discussing the rampant nature of HAIs in nursing homes. These are not bureaucratic “drones” that government employees are often portrayed as in the media. Nearly every single person I interacted with was committed to saving lives.

Early on in the meeting, Dr. Cardo said, “We are all patients.” The truth of that statement reverberated throughout the auditorium. No matter our current health status, at some point every single American is a patient. Shortly after the meeting began, the head of the CDC Dr. Thomas Frieden came to speak to the group. Though Dr. Frieden was only supposed to spend ten minutes with us, he actually remained for over a half-hour engaging in conversation and answer questions. Dr. Frieden was unequivocal in saying “healthcare associated infections are unacceptable.” Frieden was also clear that we need to develop systems within healthcare that compensation for human error. He said, “it’s not about getting people to be perfect. It’s about getting systems and fail-safes in place that prevent harm.” Finally, Dr. Frieden emphasized the importance of patient’s stories, saying “we need to see the lives and faces behind the numbers” if we’re going to make progress.

As the day progressed, there were many excellent conversations and brainstorming sessions. Highlights of the rest of the day include:

• Learning the the CDC has three main goals around HAIs: Improved adherence to their guidelines by healthcare providers; increased surveillance and tracking of HAIs, and increasing the capacity of state health departments since healthcare is “primarily a state affair.”
• Hearing that one of the CDC’s key challenges is that public health has “no natural feedback loop”, so they have to engage patient groups to assess how they’re doing.
• Learning about the stark public health challenges caused by the rise of ambulatory surgery centers, a full 80% of which are not owned by a hospital (even when they are physically located on a healthcare campus) and only 25% of which are accredited by the Joint Commission (which accredits hospitals). These facilities are often staffed by per diem nurses, radiologists, and anesthesiologists, making it very difficult to ensure consistent and high-quality care.

Finally, a significant part of the meeting was set aside for a discussion of C. diff. The CDC staff seemed particularly perturbed by the lack of progress made in stemming the growing tide of death and harm it causes. There was acknowledgment that prior to 2000, C. diff was largely seen as a “nuisance” infection with a low death rate. But since the CDC began surveillance, they have noted (as many public health experts have) the increasing rates of death and harm caused by C. diff. One CDC expert said that C. diff is the “poster-child” for the “portability of HAIs” (or the ability for infections to be transferred from one patient/healthcare worker/facility to another and even into the community). Since the meeting, PLMF has been in touch with several CDC staff member and we look forward to working with them to increase our mutual impact in minimizing death and disability arising from C. diff.

Ricky is a 25-year-old man living in Los Angeles, California. I became acquainted with him through a Facebook C. diff Support Group.

Ricky Spiese

Ricky’s story is unique and interesting for a number of reasons. First, Ricky’s convinced that he was colonized by C. diff while visiting his late grandmother in a nursing home.  He notes that, while she had been diagnosed with C. diff, at no point did the nursing home staff warn him or his other family members to take sanitary or hygiene precautions.

Second, Ricky’s C. diff infection was set off, not by the oral antibiotics typically associated with CDIs, but by using Cipro eye drops.

Third, Ricky’s mother figured out that he was suffering from C. diff by reviewing his grandmother’s medical records and realizing the connection between her mother’s illness and her son’s.

Finally, Ricky spend months and thousands of dollars trying to cure himself of C. diff. Eventually, he and his gastroenterologist decided he should have a fecal transplant.  Inexplicably, the hospital where the GI doctor was affiliated refused to approve the procedure, so Ricky ultimately ended up doing an enema-based fecal transplant at home!

Please read and share Ricky’s story to help us raise awareness.

Ricky Spiese’s C. diff Story

Tiara Davis is 22-year-old woman living in Jacksonville, Florida. She has been battling C. diff since April 29th. Despite not having been hospitalized, or having any of the risk factors typically associated with C. diff infections, Tiara has lost more than 40 pounds in the past 4 months as she struggled to get diagnosed and received effective treatment.

Tiara’s story is a perfect example of the changing face of C. diff as it continues to morph from a healthcare associated infection primarily found in elderly Americans with compromised immune systems to a disease that can seemingly afflict anyone at anytime. We are grateful to Tiara for sharing her story with us and helping us to dispel that myths around C. diff.

Please helps the foundation and Tiara to raise C. diff awareness by sharing her story with your friends and family by email or on social media. You can click on the icons below to share Tiara’s story.

Tiara’s C. diff Story: Fighting C. diff in Jacksonville

In this blog post, I wanted to share the excerpted testimony of Jean Rexford, executive director of the nonprofit advocacy group Connecticut Center for Patient Safety, to the U.S. Senate Committee on Aging and member Sen. Richard Blumenthal. Jean is a friend and amazing activist both in her state and nationwide. While her testimony is specific to Connecticut, it contains lessons for the patient safety movement writ large. – Christian

“Preventable adverse events contributed to the deaths of as many as 950 Medicare beneficiaries last year in Connecticut alone. These 950 deaths occurred in Connecticut hospitals – this statistic does not include preventable deaths in our nursing homes or private homes, nor does it include the non-Medicare population. Another 22,000 patients acquired infections while they were treated in health care facilities and almost all of these were preventable.

Three separate recent reports in 2010 and 2011 found that at least one in four patients are harmed while hospitalized, and the financial costs are staggering. Nationally, hospital-acquired infections cost our economy as much as $45 billion, while patient falls in hospitals and nursing homes in 2005 alone added another $34 billion in costs.

Behind each statistic there is a name, a family, a story of sorrow; for some it’s medical bankruptcy, for others, it is unemployment. But for all patients harmed by the health care system, there is physical and emotional pain, a profound broken trust, and disbelief that while being treated they had been harmed by preventable medical errors.

The Connecticut Center for Patient Safety was formed in 2005 to be the voice of consumer patients. We are determined not to be forgotten collateral damage in a terribly broken health care system. Today, we are joined by other advocacy groups in a national patient safety movement. Loosely organized through Consumers Union Safe Patient Project, we work together to promote patient safety, improve quality and protect patient rights.

In Connecticut we are working with another patient focused advocacy group – Code Jump Start. We are trying to shine a spotlight on the need to put the patient first and foremost in this vast medical industrial complex and the regulatory agencies that have in the past not always had patients’ interests in mind.

“We began our work with hospital infections. When I learned in 2005 that there were just two infections reported across 31 hospitals in Connecticut, I knew that it was a good issue to tackle. We were told by hospitals executives with whom we spoke that most infections were ‘expected,’ which revealed to me a fundamental gap between consumer and medical facility perspectives. I can assure you that no health care consumer ‘expects’ to visit a licensed medical facility and acquire a deadly infection as a result of receiving care. It was not difficult to amass stories of patients and families and what had happened to them when they had acquired an infection. Keith lost his job. Mary’s infected hip replacement put her in a wheelchair for the rest of her life.

We brought these stories to our legislature – and legislators added their own stories. Twenty-six states now have legislation requiring public reporting of hospital-acquired infections, and the federal government paid attention. There is an impressive nationwide effort to begin to address infections and needless suffering and costs. But think of the individuals who have died and their families loss because medical facilities were slow to react without legislative intervention.

We have learned over the years that legislation has limitations … Health care consumers will never get all that we want or all that we deserve. There is absolutely no road map for the consumer patient safety movement and only meager funding for advocates. When funding is awarded for patient safety improvements in the clinical setting, there is seldom a requirement for consumer representation on medical facility commissions, panels, and workgroups studying patient safety innovation and quality improvement. Most funded endeavors exclude patient voices altogether.

While we have worked hard to collaborate with hospitals to get a seat at the table to solve the patient safety epidemic, we concurrently faced obstruction by the industry’s powerful and well-funded lobbyists serving profit motives first. We realized we had to think more creatively and decided that nurses make an enormous difference in the quality of care and keeping patents safe. We started an outreach program to nursing schools. Collaborating directly with providers, instead of institutions, seemed a far more positive way to work. Our nursing education program has been successful and continues to grow.

Some doors have now opened and we regularly participate in state and national efforts; however, there is much work to be done to bring awareness to an issue that for too long has been accepted by the medical community, overlooked by regulators, unknown to the vast majority of the general public and unsuspecting patients, and out of the realm of consumer protection. Without transparency and accountability, patients will continue to be harmed by medical facilities that tolerate errors at a rate unheard of in other safety sensitive industries.

We are eager to work with medical facilities and the health care system, and have just recently begun collaborating with innovators that welcome our participation … Islands of excellence … have begun to take shape and make progress, but why aren’t these islands the norm, instead of the exception?

Several years ago, the federal government launched the Partnership for Patients. This was an important initiative for health care providers but it took two years before patients and patient advocates were even invited to Washington to participate. But then we were told not to come. There was no money – no money for the patients.

We were sadly an afterthought. Patients and patient safety must be a reflex. Only when we become an equal partner will we begin to see safe patient-centered care.”

http://westfaironline.com/25340/patient-safety-must-be-a-reflex/#comments

Though the news about Clostridium difficile (C. diff0 infections has been grim of late, there are several things that you can do to protect yourself and your loved ones. A recent report by the Centers for Disease Control and Prevention noted that, contrary to the common wisdom, most people acquire C. diff, not in the hospital but in medical settings such as nursing homes, doctors’ offices, and outpatient centers.

However, as WebMD stated shortly after the report came out, here are 5 ways you can be proactive in protecting yourself:

1) Use antibiotics appropriately and only when necessary. Per WebMD, “Antibiotics are lifesaving medicines, but do much more harm than good when you don’t need them. Don’t beg your doctor for an antibiotic prescription if he or she doesn’t think you need one.”

2) Tell your doctor if you have been on antibiotics and get diarrhea within a few months.

3) Wash your hands — carefully — after using the bathroom.

4) If you have diarrhea, try to use a separate bathroom from the rest of the family. Be sure a bathroom is cleaned well if someone with diarrhea has used it.

5) If you are a caretaker for a person with C. diff infection, wear gloves during active treatment. Then clean your hands thoroughly. If the patient is using the bathroom, clean it well with a bleach solution.

Being smart and careful as a patient and caretaker can make all the difference!

Read the full report from the CDC: Making Health Care Safer – Stopping C. difficile Infections

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.

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

We’re pleased to share the foundation’s latest op-ed (the second we’ve placed!) which was posted on KevinMD.com. Kevin Pho, the site’s creator is a physician who aggregates smart thinking on healthcare, including policy, and shares it with his hundreds of thousands of followers on his blog, and social media networks.

We realize that our supporters are a diverse group and you probably have a variety of opinions on the Patient Protection and Affordable Care Act (or “Obamacare”) from being thrilled about it to hating it. Whatever your political persuasion, we hope you’ll agree that the media has relentlessly focused on the individual mandate to the near exclusion of other aspects of the law, including important elements related to patient safety and healthcare associate infections like C. diff. Our co-founder and director, Christian John Lillis, wrote the piece to highlight the dearth of discussion on these aspects of the law and to raise awareness of the dangers inherent in throwing out the aspects of the law that serve public health along with the parts that are less politically palatable.

Whatever your position on the Affordable Care Act, we do hope that the crux of the piece’s argument, that patients have a right to know infections rates when deciding on a hospital and that payment should be aligned with lower infection rates, will resonate with you.

 How the Affordable Care Act combats preventable hospital infection

I just returned from Hadley, Massachusetts, where I attended the first gathering of NorthEast Voices for Error Reduction (NEVER), a regional coalition of patient safety advocates. Despite often being lost in “acronym hell” because most of the other advocates are much more experienced than me, it was an amazing experience with a great group of people.

NEVER grew out of the Consumers Union Safe Patient Project (where many of us first met) from a desire to be more connected with the work each other is doing in our state, to identify areas where we can collaborate across states, and learn from each others’ experiences, good and bad.

I had been communicating with most folks in the group since I attended the Consumers Union Safe Patient Project Summit in October. While most of the day was taken up with a lot of conversation about logistics, putting together a website for NEVER, and other stuff that’s “inside baseball”, I did come away with some observations I’d like to share.

First, we talked quite a bit about how to get more people involved  in the patient safety movement. Of the 9 people at the meeting, two are employed by consumer organizations. The rest of us had all lost a loved one to negligence, medical errors, a hospital-acquired infection, or some combination. We wondered how we could reach out to more people on the periphery. Through our foundation, we have so many wonderful supporters who donate, volunteer and spread the word, but when compared to the magnitude of the problem we remain the David starting up at Goliath. So how do we get more people involved in patient safety issues (and, more generally, qualify health care) in a meaningful way?

That brought me to my second, related observation. The “price of admission” for becoming an effective patient safety advocate is very high in a number of ways. The primary cost seems to be losing someone you can’t bear to live without. For me and two other advocates, it was our mother. For another two, it was their father. Another woman’s husband had his spinal cord accidentally severed during an unrelated surgery. He lived as a paraplegic for 18-years before succumbing to problems related to his loss of mobility. He was only 50.

Beyond our grief, which is often our entry point into this work, to be a patient advocate in this massive and complicated overlapping series of corporations, nonprofits and government agencies that compose the US health care system means to be at the bottom of an enormous learning curve that you will probably never master. I’ve been at this for two years now and the amount one could know is staggering. The very complexity of our health care system is often a barrier to a huge swath of Americans being engaged in reform. Finally, in a country where most families require two incomes (not to mention the single parents), being an advocate takes time. I should note that there are other members of NEVER that couldn’t join us because they couldn’t get away from their job, or have family obligations, or other normal things that meant they couldn’t get to Hadley today.

Lastly, I couldn’t help but notice how involved nurses are in the patient safety movement. Of the 9 advocates assembled, four hold nursing degrees. We also met another nurse in the hotel this morning who was happy to share her experiences with us. My aunt, Helen, who serves as an adviser to the foundation, is also a nurse. This is not to say that doctors or other healthcare providers are not interested in patient safety, but my experience definitely skews towards nurses being the foot soldiers in this battle. I suspect that relates back to time. Doctors, generally, work longer hours than nurses. And nurses, generally speaking, spend a great deal more time with their patients then doctors do by simple virtue of their unique roles in health care delivery.

I’m excited that The Peggy Lillis Memorial Foundation is part of NEVER. I’m confident that Mom would have liked each and every member of this tireless group, particularly the extraordinary moxy on display. I also look forward to keeping the Peggy Foundation family informed of NEVER’s progress and sharing other reflections as they come up.

In closing, I want to offer a shout out to the folks I spent today with and encourage you to visit their organizations’ websites and get involved in your state.

Jean Rexford, Susan Manganello, and Lisa Freeman from the Connecticut Center for Patient Safety

Lisa McGiffert from Consumers Union Safe Patient Project (double shout out to CU for covering our lodging and food!)

My compatriot from New York state, Martha Deed (check out her awesome online book, “The Last Collaboration” about her late daughter Millie whom we lost to medical errors)

Lori Nerbonne from New Hampshire Patient Voices

Kathy Day a retired nurse and patient advocate from Maine

Patricia Kelmar a consultant on patient safety issues (pictured above)

Jean Rexford (speaking) and Lori Nerbonne (taking minutes) at the NEVER Meeting

Two years ago today, we said goodbye to our mother, Peggy. The service was beautiful with friends and family participating in the Catholic funeral rites through readings, presenting the gifts and serving as Mom’s pallbearers.

As Mom’s good friend Maryann said, “the Church isn’t this full on Christmas Eve!” The hundreds of people who joined us to bid our mother goodbye is just one example of the broad reach and impact that Peggy had on their lives.

Since we lost Mom, so many people have come forward to share their own memories and reflections on the woman she was, the impact she had on their lives and the lives of her students. Here are some we’ve found particularly touching:

Peggy was my childhood friend and a friend to the end. I used to play with her when we were just kids and hung out with her as teenagers. We always ran into each other in Bergen Beach. The last time I saw her she showed me pictures of her beautiful children and said she was going to teach. I was so proud of her! She was a lovely, warm and loving person. – Jean

Today is 2 years since I lost my sister and best friend. It seems like yesterday and forever. Every family has a force to be reckoned with and she was ours. Every family has a moral compass and she was ours. She was my rock and my anchor, not only for me but my children too. We miss her terribly. – Helen

If Peggy thought you were crazy, she’d tell you. – Cindy

Peggy’s dedication as a teacher could be seen every day, on the faces of every child, who followed her every word. She made sure they loved learning. She made learning fun. She passed her love onto each child so that their experience in Kindergarten would be the best start of their education. Peggy succeeded beyond her own expectations and that’s what makes a master teacher. – Maryann

Our dear friends at AVA Video also made this beautiful photo slideshow with Mom’s life in pictures set to some of her favorite music.

While nothing can ever bring Mom back, the work that we do in her honor and the warmth of friends and family, help keep her alive in our midst as a force for positive action against C. diff.

Another video from our first fundraiser, Celebrating Peggy’s Life, where we talk about the genesis of starting The Peggy Lillis Memorial Foundation and our initial goals.

Peggy with her sons, Liam (r.) and Christian

In 1995, I went to England with my best friend, Cindy. And while I was in England, something happened that has long been a favorite “Mom” story.

My friend Michael, who was not a terribly butch guy and pretty slim, had been dating a guy named Christopher for several months. Christopher, who was a complete asshole, was also about 6’3, lanky but built, and had a reputation for being a badass. Michael had let Christopher move in to his apartment in Starrett City.

One night while I was in England, Michael called my house in a panic. My mother answered the phone and quickly set about figuring out what was wrong.

Michael: Can I come spend the night at your house? Christopher is being mean to me.

Mom: Why don’t you just tell him to get out of your house?

Michael: I can’t. I’m afraid of him.

Mom: Well, I’m not going to let you be afraid in your own home. Stay put. I’m coming over.

Mom told Liam what was going on and asked him to come with her “just in case.” Liam was 18 at the time, significantly less tattooed, but an actual bad ass.

When they arrived at Micheal’s apartment, my mother turned to Liam and said: “You hang back, because if I hit him it’s self defense, but if you do, it’s assault.”

Michael answered the door visibly upset. Mom told him to hang out in the hallway with Liam while she handled Christopher.

Being a single mother, mom had long slept with an aluminum baseball bat under her bed. When he was a teenager, Liam had written “peacemaker” down the side of it in permanent market. She had brought this same bat with her, “just in case.”

She entered the apartment and turned the corner into the living room where Christopher was lying on the couch in his boxer shorts talking on the phone.

Mom looked at him and smacked the bat on the floor three times to get his attention. Christopher looked up at her with his eyes wide.

Mom said: “YOU. Get up. Get your shit. And get the FUCK out!”

Christopher yelled into the phone, “Holy shit! There’s a crazy lady here with a bat. Call the police.” And hung up.

Mom said: “We don’t need the police. I’m not going to hurt you as long as you get your shit and get out.”

She watched while Christopher gathered his things and got dressed. Meanwhile, the police arrived.

With Liam and Michael now in the apartment, Mom went into the hallway to talk to the cops. With two brothers who were cops, she explained that her son’s friend was being bullied by this big guy who refused to leave his house. The cops then entered the apartment and escorted Christopher out.

Weeks later, I was out at a club with my friend Erik. Christopher was there, and Erik got nervous. (He’d never been in a fight.) When Erik suggested we leave, I said:

“Erik, he’s afraid of my mother. If she chased him out of Micheal’s house with a baseball bat, what would she do if he even looked at me the wrong way???”