I have been caring for newborns and their families in neonatal intensive care units for 24 years. I have seen incredible advancements, which have had historic impacts on the care and outcomes of these fragile babies. I can say without hesitation, the change, which has had the most profound impact on my practice, is the development of the family-centered care approach to medicine.
Historically physicians and hospital staff would focus on the scientific or medical aspects of a child’s care. As a doctor, I knew more than the family did, and I knew what was best for them and their child. The decisions I made and the care I provided was never really questioned. After all these years, I have no regrets regarding any medical choice I made.
What I do regret, and grieve over, is how I feel that I treated the parents of some of my patients at times. I influenced parents to make decisions I thought were the best ones for their child and their family without really knowing them, or how it was going to impact the rest of their lives. I did not know about family-centered care.
My most valuable educational experience has been talking to my patient’s parents. Nothing else has been as enlightening or valuable as meeting with parents, who: come from all types of backgrounds, who had a good or bad experience in the NICU, whose child had a happy or tragic outcome, and ask them what we did well, and what did we do poorly. Their responses never have anything to do with the medical care their child received. They always share if they felt honored and respected. Did we listen too them, and did their opinion matter. Did we communicate well, and did they have a good understanding of their child’s problems, treatments, options, and what might their future look like.
Most importantly, did we understand and respect how the very difficult decisions they made in the NICU, affects them as individuals and families on a daily basis, and might do so for the rest of their lives. The medical care available is always equal, but the care given should be flexible so that the needs and choices of the families are met, which is family-centered care.
What is Family-Centered Care?
Officially, family-centered care is an approach to the delivery of healthcare, which has been developing since the early 1990’s. At its’ heart, is the belief that the healthcare staff and the family are partners, who work together to best meet the needs of not only the child, but also the family. It recognizes that each child and each family is unique. They have different personalities, life experiences, values, beliefs, education, and religious and cultural backgrounds. The parents have perspectives and information that are incredibly important in making clinical decisions. It recognizes that even in the NICU, it is the family that is the constant in the baby’s life. It is the parents who are the true experts on their child and their family. Their perspectives and opinions are very important in the clinical decision-making process.
It is a primary goal of all the NICU’s in the Seton Family of Hospitals to understand what our families teach us, and to practice family-centered care. When the physicians and medical staff members review their child’s problems, and are making treatment plans. Parents are encouraged to participate at a level they choose. Some other ways we are working towards this goal include: having a family-centered care committee, having parents on most of our medical committees, having parents participate in the review of hospital policies and treatment protocols. Parents have a voice in everything from the wording on brochures, building new parking spaces, to what food is in the cafeteria vending machines. At Dell Children’s NICU, there are no visiting hours (parents are not visitors, it is their child!).
Excellence in healthcare with: improved outcomes, decreased costs, and increased patient and hospital staff satisfaction, all happens when the healthcare staff and parents work together, honoring and respecting the expertise each of them brings to the relationship.
Dr. Patrick Hodges received his Bachelor of Science Degrees in Chemistry and Biology from the Incarnate Word College and attended medical school at the University of Texas Health Science Center at Houston. Dr. Hodges competed his pediatric residency at the University of Texas Medical School at San Antonio and his fellowship in neonatology from Vanderbilt University in 1990. He currently serves as the Medical Director for the NICU at Dell Children’s Medical Center in Austin, Texas.