Amy Jo Lisanti, PhD, RN, CCNS
“You made me feel human;” a mother once wrote in a letter to me after her daughter’s death. I had been a clinical nurse specialist in the CICU during her daughter’s hospitalization. Her daughter was born prematurely with a complete heart block and was being temporarily paced until she grew big enough to receive a permanent pacemaker. Her mother and father spent weeks staring at her through the walls of her incubator, barely able to touch her and connect with her. In partnership with the CICU team, we supported both her mother and father to hold her skin-to-skin for an hour each. We were even able to take a family picture for them. Little did we know that would be the only family picture they would ever be able to cherish. Weeks later she passed away for reasons unrelated to being held that day.
Some may say that we failed this family – we didn’t save her life. But was it all a complete failure? While I certainly hope we continue to advance to the point that all children entering every CICU can be cured, I am acutely aware that a fact of human existence is that none of us live forever. Death is a part of life that we cannot change. But the human existence is not without meaning. An essential part of that meaning arises from how we relate and connect with one another. I wonder, do we think about this enough in the CICU setting? What struck me from this mother’s letter is that she didn’t feel human in the CICU. She described feeling like a bystander watching things happen to her daughter. But the moment she was able to hold her child, something incredibly powerful happened inside of her: she felt human again… she felt like a mother.
When we began the work of strengthening family-centered developmental care in the CICU at Children’s Hospital of Philadelphia1,2, my mentor Dr. Barbara Medoff-Cooper told me, “Amy, it’s time to bring the baby back to the CICU.” What she meant was bringing to light the infant experience, the family experience, the human experience. Prior to her mentoring and earlier in my career as a CICU nurse, I remember focusing on the medical and post-surgical needs of infants – adjusting vasoactive medications, checking blood gases, assessing perfusion, suctioning endotracheal tubes, and juggling a host of other tasks. I don’t remember being trained to consider infants’ exposure to stress, their prolonged separation from parents, or the imbalance of the noxious stimulation they received versus comforting, positive, nurturing touch. I also don’t remember thinking about parents’ roles as primary caregivers in intensive care. Instead, I remember routinely asking them to leave whenever we rounded or performed a medical procedure. I do remember educating parents about what was happening to their child, but there was – dare I say – an arrogance in my mind that we healthcare providers knew what was best for their child, especially during periods of instability, and I felt entitled at times to tell them “please don’t touch your child right now” instead of teaching them how to touch their critically ill child.
I wonder how far we have come since then? Numerous pediatric and critical care societies have provided core principles and evidence-based recommendations to promote family-centered care in the ICU.3,4 Some examples of these recommendations include supporting parent presence in daily medical rounds5,6 invasive procedures, and even during cardiac arrest.7-9 Perhaps most CICUs have adopted these practices as standard by now, but have we truly embraced the essence of family-centered care in all aspects of our practice? Do we still sometimes ask parents to leave their child’s bedside for a procedure or not allow them to touch or hold their child? Do we value the parents’ perspectives and insights of their child as more important than our own?
I even wonder if we are inundated with data that may skew our perspectives: hospital-acquired infection rates, cardiac arrest rates, mortality rates… dashboards of rates. I’m certainly not suggesting these data aren’t valuable. But we need to recognize that they don’t contextualize the full human experience and therefore cannot be the only measures that shape our goals and actions. CICUs haven’t yet prioritized measures that may add to our understanding of the quality of life that infants and families experience in the CICU such as hours of sleep, time held by parents, or their environmental stress exposure, to name but a few. How might our care evolve if we incorporated humanistic outcomes of family-centered care, such as service, partnership, respect, communication, and empathy?6 I wonder if we are still missing “the baby in the CICU” – the tiny human who lives within a family unit who all desire reciprocal connection with one another. The challenge for us is daunting- how do we provide critical care that is ever-growing in its complexity and its use of novel technologies while balancing the needs of patients and families that are woven into human experience?
I believe that it doesn’t have to be an either-or answer. Family-centered, developmentally supportive care approaches patients, parents, and their families as interconnected with each other and with us as healthcare providers. Infants are viewed as having not only physical needs, but also psychological, social, emotional, and spiritual needs across a continuum of development. Parents are viewed as the child’s primary caregiver and central figure for caregiving and decision-making. In the CICU we have the privilege of serving parents during life-changing experiences and helping them feel included as active participants in parenting, caregiving, and loving their babies during their most fragile state. We aren’t going to provide perfect care to every family at every moment. But we can help parents feel respected, valued, and well-cared-for by integrating their preferences and needs into the care we can jointly provide. And we can look for opportunities of connection: moments when we can help parents “feel human,” moments when we can help them provide loving care to their infants, and healing moments that generate positive memories that they can cherish over time.
- Torowicz D, Lisanti AJ, Rim JS, Medoff-Cooper B. A developmental care framework for a cardiac intensive care unit: a paradigm shift. Adv Neonatal Care. 2012;12 Suppl 5:S28-32.
- Lisanti AJ, Vittner D, Medoff-Cooper B, et al. Individualized Family-Centered Developmental Care: An Essential Model to Address the Unique Needs of Infants With Congenital Heart Disease. The Journal of cardiovascular nursing. 2019;34(1):85-93.
- Committee On Hospital C, Institute For P, Family-Centered C. Patient- and family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394-404.
- Davidson JE, Aslakson RA, Long AC, et al. Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU. Crit Care Med. 2017;45(1):103-128.
- Rea KE, Rao P, Hill E, Saylor KM, Cousino MK. Families’ Experiences With Pediatric Family-Centered Rounds: A Systematic Review. Pediatrics. 2018;141(3).
- Fernandes AK, Wilson S, Nalin AP, et al. Pediatric Family-Centered Rounds and Humanism: A Systematic Review and Qualitative Meta-analysis. Hosp Pediatr. 2021;11(6):636-649.
- Toronto CE, LaRocco SA. Family perception of and experience with family presence during cardiopulmonary resuscitation: An integrative review. Journal of clinical nursing. 2019;28(1-2):32-46.
- Stewart SA. Parents’ Experience When Present During a Child’s Resuscitation: An Integrative Review. West J Nurs Res. 2019;41(9):1282-1305.
- Curley MA, Meyer EC, Scoppettuolo LA, et al. Parent presence during invasive procedures and resuscitation: evaluating a clinical practice change. Am J Respir Crit Care Med. 2012;186(11):1133-1139.