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Regina Holliday's Medical Advocacy Blog: Embracing Failure »

I’m reposting Regina’s blog about our journey. Thank you for all you do in telling stories through your art, seeing all of those invisible details that make the story complete and real! (comments can be made on Regina’s blog linked above.)

Embracing Failure

1977, three bright students who graduated from Stanford University had an idea.  Using a mimeograph machine as a printing press, they self-published a book.  They set up on street corners and distributed the work by bicycle and backpacks.
The name of the book was Juggling for the Complete Klutz.

The book launched a publishing company named Klutz Press.  I am sure you have seen Klutz Press books.  They are very distinctive because the book is usually packaged with all the materials needed to complete an art project, science experiment or some type of athletic endeavor.  Klutz Press has literally become a fixture in the world of book and toy stores selling millions of books since it was first created by three young people who thought anyone could be taught how to juggle.
They did that by embracing failure as a core design feature.  If you have read the Klutz juggling book you know it is full of uplifting cartoons and funny comments about the challenges inherent in juggling.  It tells you the many tricks of the trade and explains technique.  Most importantly, the book is sold with three square soft juggling balls.
It comes with these three practice balls, because you will drop the ball. 
You will drop the ball again and again as you learn to juggle.  The balls are square so they will not roll.  They are soft so they will not bounce.  This book is a best seller because it embraced the lessons that failure taught.
I wish there was a klutz press book called “Juggling Sorrow: Medical Error, Harm and the Patient/Family Apology.”   I know exactly which supplies I would package with that book.  I would package envelopes, pens and stationary.  And just like any other Klutz press title I would even pre-print the first few lines to make it easier.  Each piece of paper would say
Dear _______,  
I am so sorry.  This is what happened______________________________________

Now, was that so hard?  Was that something a grieving mother should wait 10 years for?
Do you know Dale Ann Micalizzi?  She is an amazing woman and patient advocate.  And this is her painting for The Walking Gallery:  “The Tale of Two Justin’s”

The Tale of Two Justins

She posted an incredibly moving post in September of this year about a letter it took her ten years to write.The Letter that took me ten years to write…  In January 15, 2001 eleven-year-old Justin underwent a simple surgery to drain an ankle infection.  He never awoke again and died the next day.  Dale Ann and her family began asking questions immediately but they did not get answers.  Instead they were treated to a wall of silence and began a lawsuit against the provider.  Dale Ann endured the utter hell of a lawsuit just trying to find answers.  And she did not stop there. She spent the next ten years doing advocacy work to help other families to prevent the kind abuse she and her family suffered.
Almost ten years after the fatal event that led to Justin’s death, someone reached out to share the true sequence events with Dale Ann.  He said he could no longer live with himself knowing that she was still searching for answers.  Justin had been overdosed with the wrong medication: Phenylephrine.
Young Justin

So in Dale Ann’s painting she has two sons named Justin.  To the left a young Justin sits.  He holds a book open.  It is the book of Justin, the book of his life.  He is a happy child and frozen forever in his youth.  In the center in front of Justin’s garden, Dale Ann sits.  She holds a letter of apology that explains the events that led to Justin’s death.

An older Justin

To the far right is another Justin.  This is the Justin of uncertainty; this is the Justin of what-ifs. Justin would be young man today. He may have looked something like this young man.  This Justin holds a closed book and represents 10 years of advocacy and searching for a resolution.
Here we reach the balance point of Dale Ann’s life with Justin.
She held him close and loved him dearly as a living child for a little over a decade.  And for a decade more she held him close as a memory engulfed in a roaring chasm of questions.
Now the book is closed and there can be one Justin.  And that is just and fair and right as Justin’s name itself.
      
But Dale Ann will continue her journey so others shall not suffer.  She will work with providers to help them embrace the lessons of failure and share the healing power of knowledge with others.
 

5 months ago

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Justin's HOPE healthcare blog

Justin's HOPE healthcare blog

Justin's HOPE Project at The Task Force For Global Health

CONTACT INFO: Dale Ann Micalizzi Founder/Director of Justin's HOPE Project at the Task Force for Global Health (Child Survival and Development.) Healthcare advocacy and education in loving memory of our precious child. Collaborations, speaking requests and comments to: micalizzidag@aol.com

"Dearest Dale, All over the world, your love for Justin burns brightly and fills hearts and lives with hope for a safer future. Our thoughts and love are with you. Arohanui." ~ Marie Bismark MD, JD

"I cannot fathom walking a mile in your shoes, but the emotional intensity for me was as real as it was when we first met – and that my friend is you delivering such a heart-felt story!." ~Maureen McKee NJ Council Teaching/Children's Hospitals

Our Recent Health Education Projects:

Author to an issue of Pediatric Clinics of North America on Patient Safety (Summer 2012)

What happens when things go wrong? (Pediatric Anesthesia 2011)

Our PIPSQC Faculty Presentations "Making Health Care Safer for Children."

Informed choice: The meeting point of law, medicine, and person-centred care

RCA: Engaging Patients and Families in Root Cause Analysis of Sentinel Health Care Events 2012


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Justin's HOPE Project will focus on Healthcare Openness, Professionalism and Excellence via education, research and reform. Our vision is to promote quality, safe, compassionate, patient and family centered healthcare. Thank you for visiting and for helping us save lives together!

Justin's HOPE Project Annual Report/ 501 (c) (3) tax-exempt organization

The letter that took me ten years to write

Join our Facebook Group: Compassion in Healthcare-The Heart of Healing (Creator)

My 2011 IHI Forum Presentation

A Heart of Healing-family perspective research

*Now accepting essays-Apply for Justin's 2012 Institute for Healthcare Improvement Forum Scholarships!

Justin's HOPE IHI Forum SCHOLARSHIP WINNERS: Nora Dackiewicz, Rachel Wang, Kelly B. Garrison, Paul Trani, Carolyn Phelps Kergosien, Munashe Kaseke, Acklema Mohammad, Kelly O’Connor, Thomas Spain, Margaret Coit, Tamara Bavousett, Meredith Perry and Lori Montagna. I am extremely proud of this project and of these healthcare providers!

"‘You and your story are such an inspiration to me to continue to work to truly improve the field of health care. IHI is such a wealth of information an educational opportunity, but as a graduate student, I have been worried about how I would be able to afford attending the forum. It would be an absolute pleasure to be able to be there with you.” ~A scholarship beneficiary

Donations warmly appreciated to Justin's HOPE Project 325 Swanton Way, Decatur, Georgia 30030 (or click here)

IHI 24th National Forum-Please join us!

#ptsafety #transparency #pediatrics #medicine #medethics #meded #hcsm #hcr #healthinnovations #hospital #law #disclosure #compassion #children #nurse #pharmacist #physician #medstudent

Health Education Resources to help you save lives from harm, to educate and to heal:

A Mother’s Journey Through a Health Care System that was Meant to Comfort and Heal (IHI)

A Family's Search for Truth (PSQH)

The aftermath of a never event (Modern Heathcare Commentary)

BMJ-Leadership for safety: industrial experience

National Association for Healthcare Quality CPHQ Certification

Remaking American Medicine: Hand and Hand

Patient Family Anesthesia Check List (MHAUS Board Member)

The power of apology (New Zealand Medical Journal)

Realising the research power of complaints data (NZMA)

Remedies sought and obtained in healthcare complaints BMJ

From tragedy to advocacy (Modern Healthcare)

Respectful Management of Serious Clinical Adverse Events (IHI Partner/Advisor)

Integrated Accountability & Collaborative Transparency Program IACT (Co-Presenter IHI Forum 2012)

Patient & Family Centered Care partners (PFCC)

PSNET Patient Safety Primer Error Disclosure (AHRQ)

HHS Partnership for Patients (Partner)

AHRQ M&M: Duty to Disclose Someone Else's Error?

Welcome to the Walking Gallery by Regina Holliday (I am jacket #102)

The Grief Toolbox

Medically Induced Trauma Support Services (MITSS)

*NEW SURVEY: Partnerships with parents/families and pediatricians to safeguard children and save lives! Click here to take survey

Survey: Emotional/Physical Impact Following Child's Death and A Heart of Healing (Research)

Justin's Life on Vimeo

My affiliations, supporters and partners in care:

Compassionate Friends Grief Support Resources (Co-chapter leader)

IHI Open School for health professions (Chapter speaker)

PIPSQC: Pediatric International Patient Safety and Quality Community (IHI Co-presenter & faculty)

Partnership for Patients - Healthcare.gov. Proud to be Partners in Better Care at Lower Costs

Please sign the pledge and join the partnership!

One and Only Safe Injection Practices Campaign NY Pilot Site (Work group member and patient safety advisor)

 Medscape Education: Free CME Courses (SIPC Partner)

MHAUS - Malignant Hyperthermia Association of the United States

(MHAUS Board Member)

Dale Ann Micalizzi

Presentations, Interviews and Partnerships: Yale Medical School, Institute for Healthcare Improvement, NRC+Picker keynote and webinar, NJ Council of Teaching/Children's Hospitals, PSQH Magazine, Institute for Patient- and Family-Centered Care, LA County Health Dept., Southwestern Vermont Medical Center, Health Mgt. Associates (Presenter for C-Suite & Faculty), CBC Radio, Modern Healthcare Magazine, Pediatric Anesthesia, Newsweek, Forbes, Time, "Dead By Mistake" Series, Wall Street Journal, Harpo Productions, Medscape, New Zealand Medical Journal, ASA Closed Claims Project, Remaking American Medicine Documentary, Josie's Story, Chicago Tribune, Albany Times Union, Schenectady Gazette, Slate Magazine, Joint Commission Resources, IHI Open School at SUNY Albany School of Public Health & Texas Tech, World Health Organization Patient Safety Champion, MHAUS Scientific Conference "Patient Safety First" and Board Member, Loma Linda School of Medicine Simulation Center keynote, NYS School of Public Health/Dept. of Health One and Only Campaign Partner-SIPC, PIPSQC, ACES ORLC, Co-Chair 2011 IHI National Forum, Consumer Health Coalition Speaker Series Carlow University 2011. Northeast Hospitals IHI Open School Chapter affiliated with Endicott College, North Shore Community College and Salem State University in Massachusetts Jan. 2012. NJHA Partnership for Patients Medication Safety Conference May 2012. Saint Barnabas Medical Center New Resident Orientation Aug. 2012

“Dale is an inspired speaker and organizer advocating for the interests of patients in health care systems. She first inspired me by her presence and telling of her story at a national meeting of the Institute for Health Care Improvement. Following that meeting she became a valued resource in helping our health system design and implement full disclosure policies that truly meet patient and family needs at the time of disclosing errors and harm. Her integrity, poise, and core commitment help keep this health care executive thinking about the 'right stuff''. I am forever grateful to her.” ~Dr. Mark Novotny, Chief Medical Officer

"Dale is a nationally recognized champion of patient safety. If there is one person who embodies the resilience of the human spirit and the transformation of a personal tragedy into a powerful force for health care improvement, it would be her. She is both tireless and inspiring in her mission, building bridges of communication between patients, families, and healthcare providers through her work with Justin’s Hope. I am proud to call her a mentor, a colleague, and a friend." ~Tricia Pil MD, Pediatrician

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