How can we say to neonatal intensive care unit parents amid crisis, "you are not alone"?

Abstract

Perhaps the greatest challenge for clinicians in the neonatal intensive care unit (NICU) is decision-making for the critically ill, or dying, newborn with his/her family. Although we strive to engage in shared decision-making, issues of human values, prognostic uncertainty, and plurality may impede good communication. Our sympathy may be at work in our trying to understand the complexities of circumstances that a particular family operates in. Empathy, however, requires that we be able to act as if we were the other person. More than simply seeing or understanding, it requires our knowing—in essence, putting ourselves in their position and (vicariously) experiencing their dilemma. Short of having experienced similar circumstances ourselves, many of us might feel that simply saying the words, “You are not alone” is inadequate. How might we say this more sincerely and act more effectively thereafter?Clinicians can now incorporate in their practice the use of a recently produced videotape entitled “You Are Not Alone” (Colorado Trust, Colorado Collective for Medical Decisions, and Nickel’s Worth Productions, 1998, Denver, CO). It is thoughtfully composed and within 30 minutes relates parental concerns, values, and considerations from half a dozen real cases in which parents faced the difficulties of dealing with prognostic uncertainty in the NICU. Included are cases of impending death or significant morbidity, the limits of viability, lethal anomalies, decisions to continue, limit, or withdraw life-support measures, or undertake what were considered risky surgical interventions. Interjected amid these parents’ stories, replete with scenes from the NICU and, for some, scenes from home thereafter, are observations from key NICU staff: Dr Peter Hulac, a neonatologist1; Father Bill Pounds, a chaplain, NICU nurses; and psychologist-author Deborah Davis, PhD. The tape itself comes with a “User’s Guide” complete with suggestions for its use in educational settings for staff and also for interactive settings with parents.As a neonatologist, I find this videotape to be valuable in conveying our mutual burden of decision-making—something beyond our own telling it (to colleagues or families). It provides a look into scenarios similar to those our patients’ families are facing: facilitating parents’ dealing with their infant’s experience and recognizing they are not alone. This helps to both overcome denial (“This can’t be happening to me”), and validate their very real and present feelings that are experienced amid crisis. It is also helpful to hear from parents on the video who have endured these experiences how they arrived at their own decision for their child—bringing the focus of decision-making to what is in the best interest of the infant. Although parents and staff relate other concerns in the video, the message of the child’s best interest rings through clearly—whether the decision was to continue life-extending treatments or opt for comfort care. Poignant words are expressed about pain, suffering, selfishness, life’s meaning, and living with one’s decisions. In so “seeing and hearing” these parents, we can better approximate their place and their plight—we can better employ empathy. Finally, it allows parents and staff to attend to potential lingering concerns (“What will I think of myself in the years ahead when I remember the decision I make today?”).This videotape was an outgrowth of the Neonatal Care Subcommittee within the Colorado Collective for Medical Decisions Project. It involved a deliberate, multidisciplinary, and time-consuming process in generating guidelines for the appropriate use of intensive care—and then engaged the public in reflecting on them. There are 5 guidelines for neonatal intensive care stated in the tape. These are also addressed in the accompanying literature and Dr Hulac’s article.1 These guidelines, the comments of the staff and the narrator, and most importantly the visions and voices of the parents all make this tape a valuable addition to any NICU’s library.