In congenital heart surgery, success is much more than ratings
After decades of care, best practices for treatment of congenital heart disease have emerged.
In the 1940s, the survival rate for infants born with congenital heart defects was less than 10%. Now, breakthroughs in the detection and treatment of congenital heart defects have greatly improved the prognosis for affected children. Only 80 years later, more than 90% of infants born with congenital heart disease survive into adulthood.
Those of us who care for children with severe congenital heart defects have learned powerful lessons along the way. Adherence to best practices is certainly integral to delivering the best-possible care. A heart center’s surgical outcomes link to its surgical volume. Shared accountability, an empowered team and a true appreciation of the life-or-death nature of our work impact a physician’s ability to care for every child, from infants with mild heart defects to patients with highly complex cases.
Phoenix Children’s Hospital has consistently been rated as a top children’s hospital. But even with the best teams, and in the best centers around the world, things can go wrong. People make mistakes. We all do.
Therefore, it is standard practice at our institution to aggressively evaluate any adverse situation to determine where we must modify our approach and processes to mitigate future mistakes and ensure we’re doing right by every patient.
Through this constant growth process, several best practices have emerged. Some are clinical, whereas others center on softer skills that make a hard impact on patient outcomes.
The team at Phoenix Children’s performs, on average, more than 500 heart surgeries per year — and every patient case is different.
High-volume, high-acuity heart centers such as ours are able to diagnose and treat a wide range of conditions, from routine procedures to rare life-threatening conditions. We understand that our volumes have a direct connection with our surgical outcomes. In a study that evaluated 35,776 pediatric patients at 68 centers in North America, higher-volume heart centers were linked to lower rates of postoperative mortality.
Of course, high volumes don’t automatically yield good outcomes, but volume is a proxy measure for other factors that impact patient care, including adherence to best practices in the care and follow-up of postoperative congenital heart patients.
Although congenital heart disease is the most common birth defect, there are many different types of congenital heart defects diagnosed.
It is incumbent upon an institution dedicated to treating these patients to establish processes and protocols to standardize the treatment approach. This ensures the institution is providing the best, most specialized care for its patients. For example, in the CV ICU at Phoenix Children’s, our team developed and implemented evidence-based clinical pathways for a variety of common procedures like ventilator weaning, anticoagulation and sedation administration.
This also means that when we are faced with outlier patient cases with complex physiology, we can focus our attention on developing the unique treatment plan they require.
In 2007, our institution implemented an interstage cardiac surgical monitoring program, now named the CHAMPION program. As one of only 68 interstage monitoring programs in the country, CHAMPION accepts infants who have severe congenital heart disease and single-ventricle physiology. These infants will require multiple complex surgeries to correct their condition, many before their third birthdays.
The program allows ongoing monitoring of babies at home and around-the-clock support for parents. Most are overwhelmed by the prospect of caring for extremely fragile children, but with unlimited access to providers, regular check-ins via text message and a concierge hotline that is always active, combined with weekly appointments at the heart center, clinic checks and physical, occupational and feeding therapies, parents become an integral part of the care team. The program has completed surgeries and administered successful monitoring and care for more than 250 patients since its inception.
Another significant addition has been the incorporation of 3D imaging and printing for surgical planning and parental education. Efforts by the biomedical engineering team have helped the care team to achieve a better understanding of the intricate anatomical variants that may be in play, which minimizes the guesswork that was needed in the past. Parents have also benefited from a better understanding of their child’s anatomy and can integrate with the care team to feel comfortable with the plan being carried forward. We are now working to print cardiac structures in materials that can be sterilized so that we can bring them into the operating theater for real-time use and implementation.
Every hospital and health system — indeed, every organization — talks about the importance of “team.” Good intentions aside, oftentimes it’s just talk. But it should be a central part of the work at any institution that cares for patients with congenital heart defects.
This can play out in a number of ways. Our institution pursues a relentless commitment to accountability and openness. Every single person on our team, from schedulers and administrators to nurse practitioners and surgeons, is accountable and contributes to our outcomes. For example, we might come together to celebrate a positive outcome in an extremely difficult case, and likewise, we doggedly pursue problem-solving opportunities to improve as a team.
In the surgical suite, every team member must be empowered to speak up if they don’t understand what’s happening or if the surgeons are doing something different than what was anticipated. Instead of shrugging it off or assuming that the doctor knows best, every member of the team should be charged with asking questions to check and double-check that the patient is receiving the right care. There should be no threat of reprimand for speaking up, nor should the institutional culture convey that there are egos to cultivate. This simple protocol has made all the difference in several patient cases over the years.
We believe the team approach should get a major part of the credit for our successes in ratings and rankings, and for the growth of our cardiothoracic surgery program. Even so, we are keenly aware that surgical outcomes can change in an instant.
Behind every outcome is a child with a complex cardiac medical issue and parents desperate for answers. Saving their baby’s life is a medical triumph. Any failure from our team leads to their very worst day. With such high stakes, we know there is always room for improvement.
- Pasquali SK, et al. Pediatrics. 2012;doi:10.1542/peds.2011-1188.
- For more information:
- Daniel A. Velez, MD, is co-director of The Heart Center and division chief of cardiothoracic surgery at Phoenix Children’s Hospital. He can be reached at Phoenix Children’s Medical Group, Thoracic & CV Surgery, 1919 E. Thomas Road, Phoenix, AZ 85016.
Disclosure: Velez reports no relevant financial disclosures.