A Mother’s Prescription for a Health Care System that is Meant to Comfort and Heal

1. A Mother’s Prescription for a Health Care System that is Meant to Comfort and Heal Dale Ann Micalizzi Advocate for Pediatric Patient Safety & Transparency in Medicine Medical Resident & Staff Training Presentation 2006 Questions/comments welcome micalizzidag@aol.com Justin’s HOPEhttp://www.taskforce.org/justinhope.asp The Task Force for Child Survival and Development

2. Justin’s HOPEHealthcare/Openness/Professionalism/Excellence

3. Objectives: • Passionately convey patient/family perspective following adverse event • Emphasize importance of patient safety, full disclosure, empathy and an apology • To demonstrate why we are in need of system recovery, regulation and change • Move from knowledge to action now!

4. Justin’s story: Adrienne G. Randolph, MD, MSc “On January 15th, 2001, Justin, a healthy 11-year old boy, was taken into surgery to incise and drain a swollen ankle. He was dead by 7:55 a.m. the next morning, leaving behind two grieving and bewildered parents who desperately wanted to know why their son had died. But medical care was to fail them twice – first their son died and then no one would explain to them why. I was one of the consultants, from another Children’s Hospital, contacted by Justin’s parents to review his records and figure out what went wrong.”

5. The Grief Process • Shock, numbness, sadness, regret, guilt, disbelief, terror, despair, anger, physical pain and loneliness are common. Few people can understand how deeply a bereaved parent hurts unless they have been there. The pain and sadness is always with us. • It was our job to keep our child safe. If we don’t know what happened, we inevitably blame ourselves for having failed in our duty as parents.

6. The Muddied Waters • The Coroner’s office states, “ We need you to sign for a complete autopsy because something isn’t right…you need an attorney.” • Nurse states, “Justin wouldn’t wake up- we all knew that meds were given that caused the arrest.” • An attorney’s spouse confides , “There was a secret meeting with the physicians and their attorneys to get their stories straight because they were afraid of criminal charges.” • Journalist states, “Residents are pulling double shifts at area facilities to meet requirements causing medical errors.” • Expert states, “They never gave him a chance.”

7. What would you do as a parent?

8. Will You Help Me Find the Truth? Who is in charge? NPSF

9. Possible Etiologies: • Pulmonary embolus • Septic shock/Severe Sepsis • Pneumonia • Medication over dose • Malignant Hyperthermia • Tourniquet • ET tube insertion • Succinylcholine • Mitral valve abnormality • Joules of electricity • Allergic reaction • Anesthesia machine malfunction, etc…

10. Patient/FamilyContactsFollowinganAdverseEvent

11. Negligence • The records were illegible, missing meds/dosages, and timings are wrong. • Anesthesia machine not impounded and checked following event. • No recorded vitals for hours. • Justin’s records were mixed with adults. • Lack of communication and team work sharing history, labs, plan. • No labs, urinalysis, echo, chest x-ray done pre-op on child w/positive staph aureus. Lack of knowledge of sepsis treatment. • Ortho resident completed surgery and irrigation alone without knowledge to parents. • “Justin's case was a constellation of errors and hurried approach that left everyone with a share of the blame.  There is no such thing as a minor procedure".

12. My Expectations I know the chaos, the nursing shortages, overtime, the financial obligations, the insurance company guidelines and the arrogance that interferes with the quality of care. I have worked in healthcare and education for over 20 years. I also know, when it came time for my son’s surgery, you remove the chaos. You develop a team effort to review all information and establish a plan. You openly communicate between specialists, remove arrogance and intimidation and have a common goal to heal.

13. My Expectations It is your obligation to complete checklists, check and double check medications and dosages, assign a nursing team and treat every case as a possible emergency with the patient as your ONLY focus. Look at the child, listen to the parents and use common sense and professional judgment when making all decisions. Slow down! You are holding my child’s life in your hands. Justin WAS important and should have been important to his healthcare providers also. I trusted you.

14. My Disappointments The hospital failed us, the nurses who were his advocates failed us, and the resident who failed to draw pre-op labs failed us. Most importantly, the surgeon who gave the case to the resident and was NOT even in the OR at the time of surgery failed us. The health department failed us by accepting the medical personnel's information as truthful. The hospital CEO failed us by not providing us with any information or support. Error upon accepted error killed my son and my faith in a medical system that was meant to comfort and heal. We will not let this happen to another family as the pain is unbearable!

15. Obstacles • System failures • Fear of legal action • Peer review/pressure • Physician culture of protecting their own • Ordered to deny and defend • Accepted practices • Weak medical regulation and standards of care • Holiday weekend/add on case/surgeon behind/disparities • Secrecy/Intimidation/Arrogance/Narcissism • Drug/Insurance/Med-Mal company protocols • Politics/Attorneys/tort reform • CEOs resisting change and not taking responsibility • Drug/alcohol abuse • Nursing shortages-minimal staffing

16. A Physician’s Perspective “ All day, each and every day, we are making decisions affecting people’s lives. We do not and cannot stop to cross every T and dot every I. If you live in that mind set, day after day, it is hard not to become casual about the people we deal with. Sometimes the outer shell is necessary to continue to do what we do, to see what we see, and still keep doing it. Caring parents are then regarded with suspicion, labeled as over-protective. A culture of us Vs them develops. Then when disaster we cannot fix tears us out of our complacent, protective shell, we have no effective coping mechanisms. At that moment we doctors are at our most vulnerable, easily persuaded by hospital spin doctors and risk adjusters…told to say nothing. Perhaps it is the hospital administrators you need to convince that the “truth will out” in the end.” ~by an Anesthesiologist abroad.

17. What NOT to say to a Parent • “YOU signed the consents for surgery and anesthesia.” • “Are you receiving counseling?” You need to get over it. • “These things happen and you may never know what went wrong.” • “I knew there was a problem when I heard the alarms.” • “I have no idea what happened-go ask a specialist.” • “I guess I can squeeze you in for a meeting but I’m very busy.” • “I don’t have to share the M&M and QA investigations with you.” • “I didn’t tell the resident to begin surgery alone.” • “Medicine is an imperfect science- I did nothing wrong.”

18. Compassion "We are truly social animals who need to know that someone cares. That is not a weakness; but, a basic need like eating and breathing.” ~ by Colonel John H. Chiles, M.D.

19. What Parents want and NEED following an adverse event • Immediate unbiased investigation with complete disclosure • To be listened to and taken seriously • Practices/systems changed to prevent a similar event • Standards of care mandated for pediatric patients with regulatory systems in place and someone in charge • Respect/Empathy/Apology • Medical bills dismissed* • Justice*

20. Provider/Patient Relationship The family needs to sit down with all of those involved and discuss the adverse event with honesty and civility. This is OUR CHILD and it is your obligation to release every detail. Don’t protect us. Don’t lie to us. Don’t diminish our need to know. You owe us this much. Disclosure is part of healing those who are left behind. It is your responsibility to make sure that disclosure happens for your patient and yourself.

21. Ethics in Medicine "I'd doubt that an ethics course would have made a difference in the docs attitude toward you.  That kind of attitudinal change must occur on a much deeper level than cogitating about the right and the good (which is what ethics courses usually emphasize).  Rather, one has to feel utterly disgusted over deceiving or stonewalling.  I'm convinced of that. You have to be so revolted by dishonesty that you simply won't do it.  And because physicians become inured to cutting the corners on honesty all the time, they often do poorly on disclosing mistakes, etc." ~by John Banja PH.D. Author of Medical Errors and Medical Narcissism and Bioethics Professor Emory University

22. A Mother’s Plea… • No one involved in Justin’s care has ever been accountable, apologized or learned from our loss…. and that is heart breaking to me. We still don’t know what happened to our son and that is difficult to live with. • I want to change the system so that this does not happen to others. I have become revolted. • Please help me make this better for the children… who are the future.

23. Lessons Learned • I learned that to improve the system, the patient and family must become an active member of the health care team and not feel intimidated or embarrassed. Trusting their senses and their instinct, they should speak up to save the lives of those they care most about. • I learned that doctors are not perfect and they need to be held accountable. Doctors are no different than the rest of us-they cry and they have addictions, divorces and skunks in their backyards. They are human. • I learned that the current legal system is archaic in dealing with the death of a child. • I learned that people sue out of anger not financial gain. • I learned how to beg and be persistent. • I learned an immense amount about medicine, law and humanity. • I learned what a broken heart feels like and how much sadder it is to be left alone with uncertainty.

24. Courage to Change Some of the most despicable human behavior has been conducted in the name of “I’m only following the law” or “I’m just doing my job.”

25. My Agenda is Bold but Essential • Develop, train and implement real time electronic format (IT) of all medical records, digital recordings of all OR procedures and transparency in medicine. The records should have been our eyes. • Re write your disclosure policies as if you and your family were the patients. • Unannounced walk through safety inspections. • Sepsis education, research and standards of care. • Create non-punitive environment for mandatory reporting of errors via Hot Line with trauma support for patients and providers. • Demolish the “walls of silence.” Find your voice. • Do not fall victim to arrogance or accept it from others-we are in this boat together. • Equal care and coverage for all- NO disparities.

26. leadership Empathy teamwork honesty education Puzzle of Hope-We need you! technology communication patient centered care

27. Medical School "Despite the difficulty in changing actual behavior, there may be symbolic importance and moral worth for medical schools to demonstrate their normative commitments, encourage apologies as the virtuous thing to do, and to put increasing moral pressure against the silence that surrounds mistakes." ~by Marlynn Wei (MD/JD Yale candidate)

28. Changing a Culture • Gathered a group of patients/family members who had experienced an adverse medical event (either at that facility or another).  • Hired an outside consultant to lead focus group • Interviewed group:  asked them about specific good and bad experiences with staff/systems, etc. (all concerns) • Data collected/reported/shared with group • Assigned group of key staff in the Patient Safety/Quality Dept to write a new policy on Full Disclosure • The staff group met with the family/patient group to discuss policy elements (used the focus group report) • Draft policy written; reviewed & edited by family/patient group • Attorneys, CEO, insurance company consulted and approved  • Disclosure policy re written • A core group of physicians trained on disclosure using family members in role play situations  

29. Rx….. HOPE • Dedicate yourself to patient/family centered quality care • Work as a team and focus on communication and safety • Don’t be afraid or intimidated to ask questions-be human and courageous • Report/Research/Teach-share knowledge and learn from mistakes • Respect/Empathy/Apology/Listen. Be real following adverse event • Be responsible for your provider/patient relationship • Become revolted and insist on change Result: Healthcare/Openness/Professionalism/Excellence

30. Thank you! Special thanks to all of the physicians from across the US and abroad who cared enough to help a grieving stranger understand. I had to search for them but I found them in abundance. They were my teachers, my confidants, my friends. They listened to my heart and shared theirs. They are the reason why I know compassion, integrity and safety really do exist in medicine and we can do better. I will be forever grateful. They know who they are~ • Music by Karen Taylor-Good “Precious Child.” • Ark drawing by Erika G. age 7 • Gratitude to Mark L. Rosenberg, MD, MPP (All rights reserved 2006)

31. Studies • Patients’ and Physicians’ Attitudes Regarding the Disclosure of Medical Errors, 289 JAMA 1001, 1006 (2003). Gallagher et al. • Effect of Reducing Intern's Work Hours on Serious Medical Errors in Intensive Care Units, New England Journal of Medicine, Oct. 28, 2OO4, Landrigan. • Risk management: extreme honesty may be the best policy. Ann. Int. Med. 1999;131(12):963-7, Kraman & Hamm. • When Things Go Wrong: Responding to Adverse Events, Leape et al, 2006. • Disclosure of Medical Errors Desirable but Difficult, Researchers Find, University of Iowa, Kaldjian, 2006.

32. Affiliations and Resources: • Justin’s HOPE founder http://www.taskforce.org/justinhope.asp • Institute For Healthcare Improvement-Patient, Family, Consumer Communityhttp://www.ihi.org • Sorry Works! Coalition board memberhttp://www.sorryworks.net • AHRQ Patient Safety Networkhttp://psnet.ahrq.gov/ • Medically Induced Trauma Support Serviceshttp://www.mitss.org • Patient SafetyGrouphttp://www.patientsafetygroup.org • The Institute for Family-Centered Care-expert panel http://www.familycenteredcare.org • Compassionate Friend's support group co-leaderhttp://www.compassionatefriends.org • Parent to Parent of NYS-advisorhttp://www.parenttoparentnys.org

33. A NEW ERA It is most certainly a time in history for an era of compassion, integrity and safety. Let’s begin with medicine and blaze the trail. The others will follow when they see our success.

34. No More Needless Deaths Please remember me…. ERIN CLAIRE JUSTIN STEFANIE SETH SPEKEN Tyler MONICA JESSICA MICHAEL LEWIS JOSIE JENNIFER KATIE CHARLOTTE LIBBY ZION SEAN LISA Amee

35. Justin A. Micalizzi5/31/89-1/16/01He did matter and he deserved better!