Photo by RIDVAN AYRIK/ Pexels
In the past month, we had a couple of patients in our pediatric ICU who had suffered tragic neurological injuries and were declared medically brain-dead. In the state of California as in most states, a pronouncement of brain death is equal to a legal pronouncement of death, and the medical team then possesses legal permission to remove mechanical support from the physical body that has remained under intensive care.
In both of these cases in our ICU, the parents struggled to accept the terminal implications of brain death and pushed back to varying degrees for more time to see if their children might still somehow find a way to recover. In these types of cases, the actual moment-by-moment practice of bedside nursing care becomes complicated. How do we honor the personhood of the patient as we provide intensive care for the body prior to removing mechanical support, and at the same time gently help the parents accept that their child has medically died?
The potential for misunderstanding nursing care
The interactions nurses have with family members as we care for their brain-dead child present many opportunities for either confusion or clarity. Nurses field the barrage of family members’ questions about what one reflexive neurological twitch might mean, why we still diligently protect the skin if the patient is really gone, and why we still tell the patient what we’re about to do if they can no longer interact with the outside world.
Our desire to continue to respect the personhood of our patient by way of a tender approach can unintentionally prolong the hope of struggling parents that the patient remains fully present and just needs a little more time to ‘wake up’: “Our child isn’t dead. After all, the nurse says she doesn’t want his skin to break down, and she’s still talking to him, so why would we take out the breathing tube?”
The shared human struggle with disconnecting from the brain-dead patient
I feel the moral distress of keeping this bodily shell viable through aggressive medical interventions when the spirit has already moved on. At the same time, if I change the way I provide care by withholding some of my personal touch, I feel a sense of loss in who I am and what I value as a nurse. In this way, I find myself deeply conflicted.
But I am aware that this is not just my struggle but that of my patient’s family as well. Human beings are not wired to simply shut off our hearts at the flip of a switch or the uttering of a medical pronouncement. We value personhood and struggle with the idea of disconnecting from an individual who was once embodied by this flesh and blood that now only remains present because of mechanical support. I don’t want to be a disconnected nurse; how much more do my patients’ parents resist the idea of a final disconnection from their beloved baby?
This awareness of our shared human struggle with disconnection gives me more empathy to meet my patients’ parents where they are as they grapple with the implications of brain death. It enables me to give them the emotional safety they need to wrestle, grieve, and then perhaps slowly trust what we are telling them about their child’s condition.
Tailoring patient care with sensitivity to the family struggle with loss
If the parents remain ambivalent regarding the brain death status, it benefits everyone for me as the nurse to clearly explain the reasons for my approach to patient care. I might say, “I want to be gentle with your child’s body, and I talk to every patient I care for whether they can hear us or not. But even though I do this, I need you to understand that we do not expect your child to recover or respond again, and I am so sorry. It feels important to treat him as respectfully as I can while he remains under our care.”
Stating this as clearly as possible helps all of my verbal and nonverbal messaging to stay consistent with the entire medical team as we seek to help the parents understand and eventually accept brain death. However, in situations where the parents are particularly resistant to the idea of brain death and the case has become drawn out and with heightened moral distress for the health care team, I and other colleagues have chosen to stop talking to the patient in front of the parents in order to avoid any misunderstanding.
My interactions all have to be in the context of broader communication with the family, built on openness, close listening, and goals of trust. Only then can the parents recognize my personalized care towards the patient as my show of deep respect but not as an indicator that the brain-dead patient might somehow still have a chance to be revived.
We cannot overstate the importance of discernment, empathy, and patience on the part of the entire medical team when caring for brain-dead patients, but particularly bedside nurses as the ones most present with the patient and family in this extremely delicate time.
Such a beautiful telling of the struggle to support parents through the unthinkable, while providing the tenderest nursing care guided by your moral compass and deep humanity. The holding of competing goals, to honor the body of a little one no longer living and, at the same time helping parents begin to know the unknowable. This is the essence of nursing. Thank you for bringing light to the shadows.