Partnering With Parents to Save Children’s Lives

Author: Dale Ann Micalizzi, PIPSQC Ambassador Lead

Founder/Director Justin’s HOPE Project at The Task Force for Global Health


I was recently reminded of a team building activity, usually for youth, referred to as the "Trust Fall." You’ve heard of it, I’m sure. It’s where you place your arms across your chest, close your eyes and free fall backwards into the interlocking arms of your friends or team. Some may be reluctant to be the one falling or the one expected to catch. But the goal of the exercise is to build harmonious team spirit and trust. You can depend on me and I can depend on you…no matter what. A sports team often feels this deep connection and bond. My hope is for hospitals and healthcare organizations to feel that partnership and trust with their staff, patients and their families.


My life as a Pediatric Patient Safety Advocate


Over the past 12 years, I’ve worked as a pediatric patient safety advocate driven by a passion for change following the death of my 11-year-old son, Justin, in 2001. Justin loved sports! He was having his ankle drained due to an infection under general anesthesiaarrested during the procedure and died the next morning after transport to a Pediatric Intensive Care Unit close by.


There have been no answers, no explanation, no apology or compassion from the anesthesiologist or healthcare team involved at the community hospital, to this day. They simply stated to us that they had no idea what went wrong and that these things happen. We were left alone to cope. The silence drove us to attorneys for answers. Sadly, this happens often in healthcare when the doors close on you. Wouldn’t it be kinder (and more beneficial) to help a family that has lost a child or had been injured during a medical procedure as much as you possibly can? After many years of searching on my own, I learned the truth:  My son was overdosed on a medication causing the arrest. This was revealed by a colleague of the hospital almost 10 years later.


I have not always been welcomed into the healthcare community since I was bold enough to ask what happened to my son and seek ways to fix the communication problem among patients and providers.


I’ve been told by a few I was not wanted at conferences when I first began this work, and even just recently a pediatrician from Pennsylvania inferred that I was “riffraff,”  had no opinion on parent surveys, and removed me from a pediatric listserv. It was sad. I always thought that pediatricians were kind, would always protect children and would welcome the parent presence. Our only motive is to help fix problems that we see. Parents are a gift and resource in the healthcare process, not a burden.


But not all providers have responded so negatively.  I have had a unique experience of partnering with many, many doctors, nurses and healthcare leaders since I began this journey. Focusing on the positive and not on a few hurtful encounters is important for progress.


I’ve been involved in more national workgroups and committees than I can count, teaching thousands of healthcare providers in presentations, Grand Rounds, RCA, and other educational settings. I’ve presented nationally for healthcare organizations, medical schools and parent advocacy groups, and collaborated on multiple publications, policies and procedures.


Sharing my story has healed me to some extent by knowing that others could learn from our tragedy. I could teach through authentic collaboration even when my voice shakes.  I have felt the gentle touch of a nurse from the LA County Health Department and consoled a surgeon sobbing after my talk at a Florida hospital. Staff confide in me about their past errors and their passion to do the right thing for patients, continuously. A med student from Yale begs me, “Please just tell us how to do it right.” These are life-changing moments for me, when I inspired caregivers to heal. This is real.


If more providers can embrace change and be open to better communication, we will have truly made a difference in the care process. All parents want to know is what happened to their child when they are harmed, why it happened and what’s being done to prevent it from happening to another child. Parents’ being part of the solution and cure is the next step in pediatric patient safety. Social media has done a great job in connecting us. The knowledge is there, now let’s collect it and use it wisely to save other children.


Catch me if I fall 


I’ve also had the privilege of working with many parents whose children have died following healthcare-related errors.  I’m in constant contact with families who were also left isolated with no answers after adverse medical events. This is where the Trust Fall comes into play.


Before families became more comfortable and involved in their child’s health care, we would blindly trust our child’s doctor and care team without asking many questions. We all now kick ourselves for being so naïve. Parents simply freefell into the arms of these providers and hospitals without understanding their knowledge, infection rates, how much sleep surgeons have had or their history and how comfortable they were with the procedure.  We had built little trust with them and many of us were dropped by hospitals that provide no safety net or support system.


When this blind trust is broken, parents and families will remember.  It’s isolating, sad and humiliating to be left alone with no resources, support or answers when your child dies. Who would ever think that after a child dies in a provider’s hands that they would allow the family to freefall into this other world of pain and trauma?


Developing Family Assistance Programs (FAP) at hospitals is way past due. We need a new system that truly supports staff and families when bad things happen or counseling is needed. There needs to be a framework or safety net in place for recovery of both the patient/family and provider. Don’t leave us alone! We can easily do better with this simple concept and it will also build that team spirit of being supported if things go wrong.


Families and providers that have lived through loss will surely like to be asked to create this program for you. Please also invest in authentic, honest, disclosure policies that tell us the truth. The time has come to treat a family and provider as you would like to be treated if this happened to you. Yes, I’m speaking to leaders here as they are the ones that make the decisions. This is a safety and economic issue. Your mergers and economic problems should not get in the way. Plans for those that need to be retrained or disciplined must be created.


Partnerships that work


I’ve been on faculty for the Institute for Healthcare Improvement since 2005 when Dr. Don Berwick told Justin’s story as his keynote to thousands during their yearly Forum. I met the PIPSQC group in 2010 when I attended their session on Keeping Children Safe. They recognized me and asked if I would speak at their mini course along with other families in the audience that year. I don’t think that this had been done before where families were invited to share their story off the cuff, some for the first time, in a room full of pediatric providers.


I’m honored to be one of the first Pediatric Patient Safety Ambassadors for PIPSQC, along with other parents that presented at the IHI Forum that day. We hope to expand this new program to include many families and providers that wish to partner for the common goal of patient safety and saving children’s lives.  Forming partnerships that are real and meaningful and will get results is exciting to me. There is no one that has more passion to make this collaborative team work than a patient or family member who has lived through tragedy or pediatricians who have lost a child after giving their best efforts.  


Parents always remember the sharp edge of grief and loss, as it visits us often, but most are motivated to get past it because there is no deeper pain. We know that our knowledge can help others.


My dad was a semi pro baseball player who always coached his grandchildren to “Keep your eye on the ball!”  When the playing field is even and the mission of safety and family-centered care is embedded into the organization, we will win the game together. I take pediatric patient safety personally and seriously. No excuses! I assume all of you do, as well. Please, never, ever give up on patient safety as the children and families need us!


Understanding what matters


At one of my presentations, I was giving the number of 98,000 deaths per year from medical error to the audience. A dad stood up and asked, “How many of those deaths involve children?” I was taken aback as no one had ever picked up on that statistic before, and I didn’t know the answer; nor was I sure that I wanted to pursue how many. He is an engineer with three beautiful young children pleading for the answer that I knew he didn’t want to hear. Since there had been little datahonest reporting or research on this subject, I sadly answered him that it is most likely more than either of us could handle but we could all help to improve it.


Marie Bismark and I co-authored a chapter in  Pediatric Clinics of North America, The Heart of Health Care: Parents’ Perspectives on Patient Safety. We had both interviewed hundreds of families over the years who filed a complaint or contacted us about their child’s care, both good and bad. We wove the stories through the lessons that we learned from these amazing families who wanted to share their experiences to help providers know some things that they may not have learned otherwise. 


This is where the pot of gold is hidden—in the family experience. I invite you to share our chapter with all of your healthcare organizationsnot just staff in social work, but students and surgeons and all disciplines as there are many teaching moments. We discuss the physical and emotional impact that is caused to a family following an adverse medical event. There is always the need for a healing hospital to come to the rescue. We also expose the resiliency of families that have lived through trauma only to develop strength and courage that they never dreamed possible. They’ve learned to live with the loss that never goes away and have moved forward to help others find a better way. The treasure that these families hold should be invaluable to the medical community. They possess information about diseases that can save lives.


As I review my surveys, most deaths or injuries to children that I’ve been contacted about were caused by adverse drug events, undiagnosed or improper treatment of sepsis, poor healthcare provider treatments, diabetic complications, improper tubing connections and healthcare facility-contacted infections. Surgery complications were usually from anesthesia errors and not the surgery. There were some rare disease and special needs complications, as well. Shared decision making was most always absent.


“A healing hospital means a compassionate, caring, trusting environment where the best possible care will be provided to our family,” a dad writes. 


Moving Forward and Demonstrating Results


Parents possess information that can save children’s lives, advance research and improve care. Families can be included in Rounds, participating in Root Cause Analysis, Rapid Response teams, contributing to research or co-authoring papers. They can help providers apply for grants for equipment that may no longer be funded but that has demonstrably helped save their child’s life. Partnering with parents who have experienced harm within the medical system can be a significant boost to your care practices. Include these parents on your teams, your boards, invite them to present their passionate story and share them with your medical students. Most families want to help. 


Some are not ready and remain angry. You will know the difference when including patients and families into your organizations. Don’t be afraid of them or make this a “choose the carpeting color” type of partnership. They are still a life-saving resource, and need compassion from you as they move through their grief.


Many families are facing a new diagnosis for their child and need support from parents who’ve been there and specialists who are willing to help. Forming these networks with providers and other parents would be transformational.


A few of the new partnering projects where results have been received:

- A Family Integrated Care (FIC) Model is explored here in BMC Pregnancy & Childbirth, A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit” One mom writes: “I’ve loved to be in the FIC project, being able to do rounds is one thing that I have liked the most and having the doctors and residents actually really listening to what you have to say.”

- Advanced Hernia Solutions I presented Grand Rounds at Halifax Health and met this extraordinary team of providers and patients working in unison to improve care.

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Expectation: “It is important at the onset of this work that the organization set realistic expectations.  It is also important that those involved understand that ‘how the patient/family is approached and treated from the very beginning sets the stage for this work.’ If the approach is positive, supportive and honest, patient/families will be more willing to work with the system to help make important improvements. If the approach is not caring and careful, then these valuable resources may be lost.” ~Canadian Patient Safety Institute. Harm to Healing-Partnering with Patients Who Have Been Harmed


Setting the Stage


Many of your organizations are working on this new culture shift. Below are a few recent publications and lessons learned that may assist you. Building those programs that embrace parents/families that have been harmed will surely heal and promote excellence before you begin to partner:

- Hire those with value: Through the Eyes of the Workforce: Creating Joy, Meaning, and Safer Health Care

- Honest Leadership with passion, integrity and involvement Leadership and Pre-Occupation With Failure 

- Create a service organization see HEART model Pediatric Clinics of North America, The Heart of Health Care: Parents’ Perspectives on Patient Safety.

- Remove obstacles Lucian Leape Wants Tougher Patient Safety Regs and Lessons Learned from Aviation Can Bring Remedies to Patient Safety  

- Educate the Students (provide patient stories and patient partnerships to medical students as part of their curriculum)

- Keep your eye on the ball of patient safety always! Leadership Response to a Sentinel Event: Respectful, Effective Crisis Management/Through the Eyes of Patients and Family Members

- Communicate and Listen Learning to listen: parents speak out at IHI Forum

- Collaborate- Learn about different personality types, cultures, diversity and inclusion and then add team work.

- Build your team-include all players Goal-Play!: Leadership Lessons from the Soccer Field 

- Be responsible for, and accountable to, your patientsstaff and board. Learn from complaints Identification of doctors at risk of recurrent complaints: a national study of healthcare complaints in Australia

- Promoting a Culture of Safety as a Patient Safety Strategy: A Systematic Review 


Other Resources to help you get started with your safety net:

1. Palliative Care: Partnering for Children because every day is a gift: 

2. Children’s Project on Palliative/Hospice Services:

3. CPSI ICSP Harm to Healing- Partnering with Patients Who Have Been Harmed:

4. Medically Induced Trauma Support Services MITSS:

5. Pediatricians Partnering with Patients and Families to Save Lives:

6. Patients and Families: Key Partners in Improving Patient Experience PSQH:

7. See Resources in our chapter: Pediatric Clinics of North America, The Heart of Healthcare: Parents’ Perspectives on Patient Safety.