Josie King Care Journals in a Pediatric Intensive Care Unit
I am pleased to share an article that was published in the Journal of Nursing Care Quality (JNCQ),July/September 2013 - Volume 28 - Issue 3. The JNCQ is a "peer-reviewed journal that provides practicing nurses as well as nurses who have leadership roles in nursing care quality programs with useful information... the journal offers a forum for the scholarly discussion of “real world” implementation of quality activities."
The article, Implementation of the Josie King Care Journal in a Pediatric Intensive Care Unit A Quality Improvement Project by Kathleen Turner, DNP, RN; Karen Frush, MD; R´emi Hueckel, DNP, CPNP-AC; Michael V. Relf, PhD, RN,ACNS-BC, AACRN, FAAN; Deirdre Thornlow, PhD, RN,CPHQ; Mary T. Champagne, PhD, RN, FAAN was written after the Josie King Foundation 30-day Care Journals were implemented at a pediatric intensive care unit and feedback was collected.
It is nice to know that the Care Journal project which grew from my days with Josie at Hopkins is making a difference. The Care Journal allows patients and their loved ones to record important details of the hospitalization-the 30-day Care Journal and our new 7-day Care Journal mini are shipped to hospitals all around the country and given to patients and families by the hospital upon admission. Most hospitals choose to add a personalized label that reads: This Care Journal is a gift from us to you. We encourage you to keep track of information and to ask questions and most of all we invite you to partner with us in your care.
We are working hard at the Josie King Foundation to continue creating innovative projects and programs that are patient centered and that will lead to better communication. Our latest projects are geared towards educating and inspiring the next generation, our future caregivers to listen to the patient, listen to the family members and to each other.
Thank you to the team of medical specialists at Duke who wrote the JNCQ article and for making this tool available to your patients and their families.
Good things are happening at the Josie King Foundation but we have a long way to go. Your support allows us to continue our work. For more information on the Care Journal project please click here: http://www.josieking.org/carejournals
Christmas in April at the Josie
April is an
especially exciting month at the Josie King Foundation. For me it is a little bit like Christmas. It
is that time of year when little treats arrive in the mail, big manila
envelopes filled with letters and reflection papers from nursing students who
have read my book, Josie’s Story.
Most of the
students are about to embark on their careers. In their letters they tell me
the impact that Josie’s Story has had
on them not only as future caregivers but also in their lives. These letters
are thoughtful, insightful and very moving. What these letters tell me is
something I have come to know over the years -- sometimes it takes more than
power point presentations and text books to move the hearts and minds of our
caregivers. Sometimes it takes a story, a real story.
I am honored
that Josie’s Story is being used in
the healthcare industry and after reading so many wonderful letters I am
excited to know that her story will continue to make for a very special new
generation of healthcare providers.
I wanted to
share with you some excerpts from a few of the many reflection letters we have
received in the years since Josie’s Story
was published. Also, check out the
picture of some of the students. The Josie King Foundation was so moved by
their letters that we threw a little pizza party for them to show our
appreciation :) See below --
From a professor: “As you can tell by
their letters, they were deeply touched by the story. Reading Josie's Story has
not only helped the students and I grow as nurses professionally, but also
personally as well.”
“This book lit a fire in me. It makes me want to
strive to be the best caregiver I possibly can be. I want to be the nurse that
patients rave about.”
"Josie's Story has inspired me to advocate for my patients as a
nurse and promote patient safety. In my practice, I want to ensure that my
patients feel safe and are well cared for at all times. This story has affected
me personally because it really shows how one simple thing such as not
listening to a worrying mother can dramatically affect your patient's care.
Listening to my patients and their families is something I will do as a nurse
and I will work hard to ensure patient safety so that I can avoid any medical
“Josie’s Story will forever be my beacon for patient safety. I will keep
open communication between myself the patient, the family and the doctors. If I
am unsure about something I will speak up. I will be a leader by not letting
concerns go unnoticed.”
"This story gave me a new insight into my patient’s experience
and how important my job is as a Patient Care Assistant. As a lesson from Josie's Story I will practice
for quality and accuracy. Josie's Story has brought on many positive changes
within the healthcare system. Through the completion of this story, I am
thankful to have the insight, and I can now personally influence the
transformation to a safer health care system."
"One part of the book that I truly loved is the part about reconnecting
the nurses and doctors who had made mistakes with the patients or their
families. I have wondered about the possibility of making a mistake in my own
practice. I'm sure I would be very upset with myself and I didn't know how
it would be handled if I ever did. Learning about the initial separation of the
patient and the doctor or nurse was horrifying. There must be a system in place
for if mistakes are made and how healing can be made on both ends. This is
something that I personally can work on setting up or learning about in my own
“After reading Josie’s Story I realize my role, as a nurse in the patient
safety movement is monumental.”
"It is quite powerful how one person (you), could implement numerous
ways to enhance patient advocacy and safety. Not only did you implement
multiple advocacies and safety measures as the focus, but also acknowledged the
suffering that healthcare workers endure when an error is made, and teaching
them how to handle the patient and their families when one occurs. If
one individual can make all of these improvements to save lives, and
improve patient outcomes, it makes me wonder what else is there that I can do
to further enhance your crusade?? Josie's
story has further solidified my conviction in enhancing patient safety and
“As a senior year nursing student I had always believed I was just an
ordinary student nurse – going through the program, working two jobs, writing
papers and gaining the knowledge I needed. Although, I found the work interesting
there were times when it was difficult and tedious. But then I read Josie’s
Story. Never before has something touched me the way that this story has and I
have never felt so moved and passionate about any topic discussed in school.”
“Josie’s Story has changed me profoundly. It has made me more aware of my
actions. Every action (no matter how big or small) has an impact on the patient
and their family.”
“After reading Josie’s Story I realized my role as a nurse is so crucial
when it comes to patient safety. I will be sure to follow the protocols, voice
my concerns and give the patient everything I’ve got. I now know that it is
essential to double check orders and medications because in the end we are all
human and mistakes can happen.”
“Josie’s Story was brought up in my hospital in a mandatory High
Reliability Training course…. Throughout school and in practice doctors and
nurses get fed so much information on patient safety that they sometimes just
glaze over it all. Josie’s Story is one of the most valuable patient safety
lessons and I will never forget it.”
“I would like to spread the word of the Josie King Foundation and Josie’s
Story to other nursing underclassmen.”
“Josie’s Story has truly impacted the way I will practice nursing. It
will be forever engrained in my mind and I will carry it with me and use it to
influence my decisions in providing safe care to my patients.”
Students from a
Nursing School in Connecticut after the JKF pizza party
thank you to the many students who have contacted us. It is clear to me that you will make a difference
in the lives of many.
On a side
note-the Josie King Foundation was so inspired by the many nurses who
contacted us that we partnered with some brilliant minds at Duke University
School of Medicine. Together we created a more robust patient safety
curriculum/educational tool based off of Josie’s
Story. Can’t wait to tell you about
it. Stay tuned, more to come in the next few weeks.
the Josie King Foundation
HIPAA-Its Negative Influence on Mental Health Care?
I recently received this letter about HIPAA from a husband who believes it played a role in his wife’s death. I was saddened to read his letter, but grateful to him that he is speaking out in order to do something to improve health care in his wife’s memory. With his permission, we are sharing it with you- the patient safety community- to generate discussion. We would love to hear your thoughts.
Sorrel and the Josie King Foundation
Nearly three years ago, my wife took her life shortly after an anti-depressant prescription change. She had been treated for depressive illness for several years. The change, a very risky period when psychotropic drugs are consumed, produced dramatic mood changes, a continual desire to sleep and other danger signs all indicated on the manufacturer’s warning label. The manufacturer also stressed that no one should take the medication without the knowledge of family or others close to the patient.
Unfortunately, my wife was essentially alone in her medication program. Although she had told me she was taking anti-depressant and anti-anxiety drugs, I did not know the details of possible side effects, including a suicide risk. Her doctor, who knew the manufacturer’s emphasis on family awareness, failed to advise the family or counsel my wife to make sure I and other loved ones knew the risks and their danger signs. The doctor elected to prescribe the drugs without counsel, citing HIPAA confidentiality restrictions.
HIPAA, The Health Insurance Portability & Privacy Act of 1996, was originally intended to control electronic distribution of personal medical information by insurance companies. It has since evolved to become a much broader restrictive force. My wife had elected confidentiality at the beginning of treatment, assuming it would apply to the content of sessions with the psychiatrist and therapist, not to the details of medication, especially the risk of fatal reactions. Medical staffs receive regular briefings that focus on HIPAA penalties which have created a high level of paranoia among health care providers to the point where they are intimidated from passing essential knowledge to those, especially the spouse, who are in most frequent contact with patients.
Family awareness is arguably most essential because doctor monitoring of anti-depressant medication is undependable, especially during the risky medication change periods. Policy, established by the American Psychiatric Association, requires that medical providers check the patient at least once every seven days. In my wife’s case that was too late. She demonstrated negative reaction the day after prescription change. Doctors expect the patient to call if there is a medication problem before the next appointment. But my wife was in no condition to call anyone. She probably did not realize she was having a reaction. And she was a registered nurse with 40+ years of experience. And I, who noticed her behavioral changes immediately, did not see them as potentially dangerous, and certainly not suicidal. But I had not been briefed. There was no family awareness. My wife was essentially alone as a direct result of misguided HIPAA interpretation.
Before more lives are lost, HIPAA needs to be revisited by Congress and its implementing agency, the U.S. Department of Health & Human Services. HIPAA is going in the wrong direction. It has become a barrier to effective health care.
Disclaimer: These views are those of the author, not those of the Josie King Foundation.
Guest Blogger - "I Want More"
Last month, Sorrel visited the New York College of Osteopathic Medicine to speak to a group of medical students. It was a terrific visit, and we wanted to share a med student's perspective on Sorrel's visit. First year med student Syed Gillani shares some interesting thoughts. Thank you, Syed!
I want to tell you the story of a little girl named Josie King. She had a whole life ahead of her that was drastically cut short due to medical error. Today, she would have been in middle school thinking about her next soccer game, dance recital or sleepover at a friend's house. However, on February 22, 2001, Josie King died at the Johns Hopkins Hospital at eighteen months of age.
Rolling forward to February 9, 2011. It was lunchtime and a Student Osteopathic Medical Association (SOMA) meeting was scheduled. Like all other meetings, people signed in, grabbed their food and settled down in their favorite seats. The speaker was Sorrel King, Josie's mother, and the room was packed. I am not sure whether it was because of our gourmet food or Sorrel King, but I'll let you figure it out on your own. I signed in and sat in the front row, waiting for the speaker to talk. Since I am a SOMA E-board member, I had heard about the speaker's tragedy in and E-board meeting, but did not anticipate how it would play a role in my life.
Dean Scandalis introduced Sorrel King and she took the stage. This confident, professionally-dressed woman started out telling the details of her daughter's death as a result of a medical error. Right from the very first minute of her talk, I felt that she engaged everyone in the audience. I was not an exception. The story was so emotional that my throat started to get dry. Being in the front row, I was sitting very close to all the refreshments, but I could not get up and grab a drink. My eyes were locked on Sorrel and I would not want to be distracted for anything. I felt a different energy in the room than most lunch meetings, and I am sure that I was not the only one in the room who was feeling like that. As I noticed the face of a guy sitting next to me turning red, I knew he was as emotional as I was.
I still remember Sorrel King telling us that during the last days of her life, Josie was thirsty and asking for more water. That helped me to forget about my dry throat, which was bothering me. I cannot imagine the shock and emotional trauma this entire family had to bear. I can tell that Sorrel King has not yet recovered from that loss and, not surprisingly, may never recover fully. I found her to be passionate about patient safety and uniquely aware of the factors that affect patient outcomes.
As Sorrel so insightfully stated, we all go through some sort of trauma sometime in our lives. It ranges from having a bad day at work to losing a loved one. The kind of human beings we are is defined by how we react to these events and the choices we make down the road. Sorrel King turned her adversity into an opportunity to delivery her message effectively. She has made choices that are making a difference in so many lives. She started to dig deeper into her tragedy and found out that 98,000 people die every year from medical errors, making it one of the leading causes of death in the United States. She decided to build the platform that would help to decrease the deaths from this particular cause. She formed the Josie King Foundation (JKF) with the money she received as compensation from her daughter's death....
As we begin our professional lives in medicine, I strongly recommend that you visit www.josieking.org and read all of the information at your own convenience. This information will be very helpful in the future and gives a different perspective of what it means to be a physician. I was overwhelmed to discover how much power I will have based solely on the trust my patients will place in me. As always, power comes with accountability. Since I have a choice, I would rather create my own accountability than have someone else do it for me. I would rather facilitate medical error prevention by acquiring updated knowledge and developing effective communication skills than be externally reprimanded following an adverse event I caused out of ignorance. According to research, communication breakdowns are the most common cause of patient death due to medical error. I have learned that in my future practice, when I am not sure about something, I'll simply ask. I will not let any factor stop me from being a patient advocate. At the end of the day, I may only be able to save one family from their lifelong grief, but that is the priceless reward.
It was after 1:00pm, but few people had gotten up to leave and the room was still silent. Due to time constraints, Sorrel had to wrap up the talk quickly, but she had effectively conveyed her message. I left the room with my dry throat and I was not even able to talk for awhile. I wanted to walk down to Alyssa Bennett, current President of SOMA who arranged this unforgettable event, and ask her (out of necessity, in the sign language my fourteen-month old nephew uses) "I Want More!" I want more awareness and education about the prevention of medical malpractice. I want children like Josie growing up to a rightful old age, having trust in our health care system and processes.
Labels: by Andrea, Guest Blogger, Medical Students
Donating One's Body to Science
Lately we've been thinking about progress in health care- how advanced medical care has become, how we still are working towards even more advancement (particularly with regard to safety improvements), how we got to the point where we are. Knowing that there are a multitude of roads that got us to this point (i.e., evidence-based medicine and its application in the clinical setting, biotechnology, the list goes on and on...), we've recently become interested in the medical advances engendered when volunteers donate their bodies to science. Thanks to these donors, researchers can discover causes (and potentially cures) for diseases and medical students gain essential first-hand knowledge of the human body.
It seems like we don't hear enough of these donors' stories.
Have you considered donating your body to science? Why or why not? We would love to learn from your reasons. If you would like to share your story, please email me at firstname.lastname@example.org, or post a comment.
Labels: by Andrea
A New Meaning for Halloween
I don't particularly like Halloween. I never really have. The candy makes everyone feel sick; the pumpkin carving is difficult even when you have the special little tools; and the costumes- it's just too hard to decide what to be. Three of my children- the teenagers- luckily have sort of outgrown it, except now instead of having to worry about costumes I have to worry about what they are doing as they run around the neighborhoods with a bunch of other teenagers at night. Eight-year-old Sam is still into the trick-or-treat thing. Every year I have grand plans of the two of us making his costume together, and every year we end up going to the "costume express" website where he picks out a costume (which usually comes with a plastic weapon of sorts and probably has a "Made in China" label somewhere on it). We type in a credit card number and pay for express shipping because we put it off until the last minute.
Last year, though, I started to think about Halloween a little bit differently, thanks to a special person named Cindy. Cindy makes Halloween feel a little bit like Christmas here at the Josie King Foundation. I met her a few years ago when I was speaking to a group of doctors and nurses. She was in the audience not because she was a doctor or a nurse, but because her husband died from medical errors in 2008.
I remembered Cindy because after that speech she handed me a sealed envelope with the word "confidential" printed on the front and she had tears in her eyes. I didn't open the envelope until I was on the plane heading home. In the letter she told me about her husband Steve and the medical errors that led to his death.
Steve's birthday was on Halloween. He loved Halloween. Each year, he would decorate his garage with strobe lights, flying witches and scary sounds that reverberated a block away. He loved to sit out front and greet all the neighborhood children who came to trick or treat and wish him a happy birthday. He would give them handfuls of candy, and then he would bring out the good stuff- little scary presents like glow necklaces, flashing teeth and pumpkin pins.
As the first Halloween without Steve approached, Cindy struggled with what to do. Should she go out of town? Should she visit a friend and pretend Halloween didn't exist? She couldn't possibly put on a happy face, greet the trick-or-treaters with a smile and do what her husband was meant to be doing. A part of her wanted to shut the door on it all and just leave a bowl of candy on the doorstep.
That year Cindy read my book Josie's Story. She told me that she felt a connection to the book and to the Josie King Foundation. She knew what she was going to do for that first Halloween. She was going to dedicate Halloween to her husband and to raising awareness on patient safety. She purchased a case of books and placed them next to the bowl of candy. As the trick-or-treaters rang the doorbell she handed them the candy and the little presents, just as Steve had done. Then she took a copy of Josie's Story and handed one to each parent who committed to reading it, and asked that they spread the word on the need to make medical care safer.
A few weeks ago, as the weather cooled off and the leaves in Baltimore began to turn red, yellow and orange, Cindy contacted the Josie King Foundation again. She told us that for this Halloween she would like to hand out Care Journals, our little green book for patients and families to help them track new, complicated medical information during a stay in the hospital. Once again Cindy will follow through with what her husband would have wished- candy and little presents for the children, along with doing what she can to educate her friends and neighbors on patient safety and the need to prevent medical errors.
Thank you, Cindy, for your support and for the generous donation to the Josie King Foundation. Thank you for your work in preventing medical errors. Most of all, thank you for making this a special day to remember Steve- even for those of us who never knew him.
Happy Halloween to you, and to everyone else.
Labels: by Sorrel, Halloween, partners
A Morning with Blue Cross Blue Shield Executives
I spent the morning
in Chicago at the Blue
National Summit of the
national Blue Cross Blue Shield Association
. This conference
was unlike any previous conference that Blue Cross Blue Shield had put together
. In the past
separate entity of the
Blues- the account people
, the marketing people
, the information technology people
- would have their own
. This year
Blues decided to mix it up
. They decided to
bring everyone together
- 1,100 executives from varying backgrounds
all under one roof for
a three day conference
A few months earlier I had been asked to be one of the conference's keynote speakers. I was hesitant to accept. This was not my usual hospital group of doctors, nurses, CEOs. How could I make a difference in the way health insurance executives think about patient safety?
In my efforts to answer that question, I simplified it, as I sometimes have to do in order to understand something. I began to see more clearly that these Blue Cross Blue Shield executives were just a group of people who wanted to help their clients- people like me and 100 million other people: they help pay our bills when we are in the hospital; they don't want us to receive a hospital-acquired infection; and they don't want us to be put into harm's way by medical errors, because these things lead to longer hospital stays or even death.
These executives don't want any of this to happen to their clients because it will cost them more money AND because they are good people. They want their clients to receive quality care, which is what we deserve and what they are paying for- nothing less.
BCBS is a big, powerful company. If I could somehow inspire them to put added pressure on the hospitals to prevent central line bloodstream infections or other medical errors that kill 98,000 Americans annually, then my job and that of the Josie King Foundation could possibly be made easier. They could come at this patient safety work from a different angle.
I decided I would miss Jack's soccer game and Eva's hockey game and I flew to Chicago. Usually when I am asked to address an audience I choose to stand behind the podium because it gives me a little sense of security. But this time I stepped away from the podium and moved closer to the edge of the stage, closer to the audience. I had only one chance, forty minutes to make a difference. I shared Josie's story and I asked the audience for their help. I flew home after the conference hoping that Josie's story had moved them.
That afternoon, the Josie King Foundation began to receive emails from people who were in the audience. They told us that they would remember Josie's story, and that they planned on using the story along with some Josie King Foundation programs to transform their work. That was all I needed to hear. I knew that the trip had been worth it. There would be many other soccer games, but not many opportunities like the one I had been given in Chicago.
Thank you to all of the wonderful BCBS executives who gave me forty minutes of their time last week. Thank you for letting Josie's story into your hearts. Thank you most of all for taking that story and letting it be more than just inspiration. Thank you for your work in encouraging hospitals to provide us with safe care. Please keep up the good work and know that the Josie King Foundation is counting on you.
Labels: by Sorrel, Speaking