(Author’s note: Permission has been granted by all parties involved, including the patient’s family, to share medical details that may make this patient identifiable.)
One of the things that feels most unfair about pediatric ICU nursing is that with critically ill children, you don’t get the comfort of being able to look back and say “At least they lived a long and happy life.” You ache that a baby, a toddler, a school-aged child, a teenager, was supposed to have their whole life ahead. But instead, much of their short life was marked by illness, prods and pokes, lines and tubes, sedation rather than play, a sterile environment full of strangers at all hours rather than a home full of time with friends and family. The deep desire in both the parents as well as the healthcare providers to do anything possible to give them a shot at a future – hopefully one that is meaningful and healthy – is in and of itself right and good. Yet the decision about how much to push both medicine, and the child as the obligatory recipient, in the fight for a future that is neither guaranteed in quantity nor quality, can often be wrought with profound controversy and ethical distress. Clinicians do not necessarily find peace with their work just because a life was physically saved; sometimes quite the opposite, as so potently described in this NEJM article.
K was a little girl who came to our unit for PJP pneumonia secondary to an unknown autoimmune disease; she quickly won over the staff with her charm and spirit. Ben became her primary nurse, and she would count down the days when Ben would be back to work. K once told her frightened neighbor in their shared room, “Don’t be scared. You’re okay, and you’re not gonna die because Ben’s your nurse.” The insight, generosity, and pure trust of this statement give only a small glimpse into the extraordinary person that K was at her young age. But we weren’t naïve; the reality of her condition made her statement so very ironic and bittersweet. We knew she had a battle ahead, so we weren’t necessarily surprised when she was transferred out of the ICU to the regular ward, only to emergently return to us a few days later in worsening respiratory distress. We held our breaths and made faltering efforts to hold up our spirits as she finally succumbed to the need for a breathing tube, which took away the ability for her parents or any of us to hear her sweet voice or see her feisty spirit, now sedated by necessary medications.
K wasn’t getting better, and everyone knew it, including her parents. She had asked for everything to be done, and so her parents promised they would give her every effort. But they knew the final effort at a very invasive therapy known as hemodialysis was going to be a Hail Mary. And as expected, once the hemodialysis started, K’s blood pressure did not improve; it became, in fact, incredibly labile. The miracle was not to be, and so the family decided within the hour of starting the therapy that it was time to remove the breathing tube and say good-bye to this beautiful, vibrant soul. Their heart.
They mourned deeply and immediately, with the heaving sobs of parents who loved their child enough to give her every chance, but also respected her personhood enough to not relegate her to a limbo, sedated existence on machines when there was no real light of life left in her. They had been so kind, so brave, so generous in spirit with the hospital staff through all of our time with them. No one would have once blamed them for being angry or withdrawn; yet they held a posture of such open partnership with the doctors and nurses throughout the entire process. Perhaps they saw us as advocates, caregivers, medical authorities; they might have even seen us as heroes. But in the way they treated us? They simply treated us as people who saw, knew, loved, and wanted the best for their daughter the same way they did. We had conversations in this spirit, and it felt like a safe place for everyone. We talk a lot about wanting to rightfully create a safe place for the patient and family. But we talk very little about how families can create a safe place for the healthcare workers, too. This family gave us a safe place.
You see, this family gave us the gift of meeting and caring for their child. But they also gave to us the profound hope that it is still possible, in this era of pushing the envelope with medical technology, to do everything medically possible for their child and still be completely reasonable and respectful of the personhood of everyone involved – the patient, the family, and the healthcare providers. I find this to be deeply healing, because so much of what I do as a pediatric ICU nurse hurts me in ways that I never anticipated. I anticipated hurting with great apology over having to participate in administering painful procedures, but I accept this gladly if it gives the child a decent chance at survival and meaningful recovery. I anticipated hurting with grief over bearing witness to death, but I accept this if it means I can be a meaningful presence in a terribly isolating time of loss. I did not anticipate hurting with such cynicism over a profession that I once thought to be only driven by good, for good. I did not anticipate hurting with such doubt and self-loathing on the days when I felt myself to be the one who would not let a weary soul rest in peace, but rather continued to agitate, turn, feed, clean, and medicate someone in perpetual distress over their over-medicalized nightmare when there was no real chance of meaningful recovery.
This family’s brave, selfless and clear-minded approach to their daughter’s last days showed me that it is still possible for me and my colleagues to heal in the ways we want to heal, hurt in the ways we accept we will hurt, and not harm in ways we never, ever intended to harm.
Ben may have been present when this precious soul died, but he and K’s parents – and the entire healthcare team in close partnership – allowed K to truly live, up until her last breath.
I find this to be so deeply healing in this era of medicine.