On August 31, 2010 after two years of medical confusion around our son, Declan’s health, we thought for once there might be an answer to his mysterious blood work, swinging fevers, pneumonia and arthritis. The doctor who thought she was prescribing the correct medicine to help with all of these symptoms actually made a grave error. Two days later on September 2 at the age of two, Declan took his last breath and joined the angels in Heaven. In the midst of indescribable grief, our loss mounted when we learned that Declan was afflicted with a rare immune genetic disease and the medicine given to him actually accelerated his decline and ultimate death.
In Search of Answers
Though many emotions emerged from this time in our lives, a nagging question surfaced: why did Declan’s pathologist determine his condition at his autopsy instead of the physicians who were treating him his entire life? With answers we so longed for while Declan was alive found in his death, we wanted to see if we could impact change. We needed to give Declan a voice.
In January 2011, I presented “Declan Donoghue: A Parent’s Perspective” to the executive team at Wake Forest Baptist Health, Brenner’s Children’s hospital, the hospital where Declan was cared for and passed away. The documents provided included an overview of my experience throughout Declan’s care — my numerous emails, charts and a timeline of care. It was a forum to discuss what I believed was missed throughout his care, the errors made and how we could make a change for better patient care protocol in honor of Declan. Our request was that children with complicated, undiagnosed medical ailments like Declan, have a medical quarterback at the hospital who would manage all of the specialists working with that child and create a forum for communication between them all together at one time. The goal was to increase communication on behalf of the patient, decrease medically adverse events and design and implement a plan to result in a productive diagnosis.
Engaging Physicians in a Collaborative Way
With a commitment to staff resources, a business plan and funding from Wake Forest Baptist Health, The Declan Donoghue Collaborative Care Program (DDCCP) was launched in April 2011. Its goal is to reduce mortality and morbidity by increasing collaboration between healthcare providers in the care of children with undiagnosed complex medical conditions or complex medical conditions with unresolved serious clinical problems. The DDCCP Structure is defined as a program within Brenner Children’s Hospital and embedded as a part of the pediatric palliative care/complex care program. It requires 0.15 FTE of physician time and 0.5 FTE of nurse coordinator time. DDCCP Eligibility is specific and includes the following requirements:
- Complete work-up done by the referring physician, AND
- Child has an undiagnosed complex medical condition/ unknown problem after the work-up, AND
- Child receives care from 3 or more specialist physicians
A Three-Step Process
The Declan Donoghue Collaborative Care Program process consists of the following steps:
- Medical record summarized
- History and Physical exam
- Input from Primary Care Physician
- Key participants identified
- Conference facilitated
- Detail plan developed
- Post conference
- Plan communicated to parent/caregiver
- Plan communicated to Primary Care Physician
- Plan implemented
A Proven Model of Care
Through August 2014, we are thrilled to share that the program has had 35 referrals, 20 conferences (with up to 15 specialists in each conference) and 14 completed diagnoses. You can click for detailed samples and results here.
We have poured our grief into hope that this program does not stay within the walls of Brenner’s Children’s Hospital in Winston-Salem, but instead becomes a program adopted by hospitals throughout the country. What better way to do this than looking at diagnosing patients differently? We believe when you have wonderfully smart doctors in one room, they will challenge each other’s thinking and look for answers until there is agreement. This collaborative thinking will result in more accurate diagnosis and give the patient a stronger voice. It will create an environment that puts the patient’s health and resolution first and reduce the risk of medically adverse events.
Changing Lives of Pediatric Patients
We are committed along with our partners at Wake Forest Baptist Health, Brenner’s Children’s Hospital to make this happen. We hope that others fighting for patient engagement are inspired by a program that changes the lives of children patients by engaging their physicians in a collaborative and effective way. And inspired by “just a mom” who now has a voice and is effecting change in a seemingly unchangeable medical system.
Editor’s Note: On November 13, the Declan Donoghue Foundation was recognized with the HOPE Award at the the 13th Annual MITSS Fundraiser and Dinner in Boston. You can view a video of the Declan Donoghue story here.