By Jim Manzardo
An ICU bedside nurse caring for an intubated post-stem cell transplant child whose swollen and discolored body was painful to see: “We’re torturing her. When will her parents let her go and die in peace?”
A CNA, after listening to a mom whose son was dying of a terminal brain tumor: “It’s so hard to listen to the mom as she struggles with her decision to stop nutrition seeing that after three weeks he is still alive. I, too, am wondering if we’re doing the right thing.”
A physician reflecting on a patient whose test confirmed brain death, yet whose parents wished to continue full support: “What are we doing? Why do we have to keep going? We’re treating a dead child. It makes no sense and goes against everything that medicine is supposed to be.”
These thoughts, feelings, and questions, which have kept my colleagues awake at night, are some examples of the moral distress I have heard as a pediatric chaplain in an intensive care unit. Being one of the top-ranked specialized pediatric hospitals in the country, having some of the best physicians, and utilizing the most advanced medical treatments are both a blessing and a curse. Highly critical and near-death patients, whom other hospitals have determined they cannot help, are often sent to us. Parents’ expectations of cure, or at least of avoiding death, are high. In fact, in the past 30 years, death in pediatric intensive care units has decreased due in large part to technological advances.
But with the saving of lives has come an increase in children with profound deficits requiring tremendous lifelong advanced medical intervention. With pediatric healthcare for the most part no longer being paternalistic, parents are the ones making treatment decisions for conditions which in the past were fatal but now with ventilator assistance, other therapies, and 24/7 nursing allow a child to survive and be cared for at home. The majority of children who do not survive in pediatric ICUs die as a result of a decision to stop life-sustaining treatment.
In this context, my colleagues are practicing their craft, witnessing incredible suffering both of children and parents, and wondering if they are doing more harm than good. Their moral distress is the emotional, mental, and spiritual struggle stemming from choices they have made that they perceive to be contrary to what for them is the right thing to do; witnessing or participating in directly or indirectly an event which they feel in some way violates their conscience and values; or deciding what the right action is, but, because of constraints, not being able to make it happen.
Each of my colleagues experienced moral distress to differing degrees on emotional, mental, and spiritual levels. Emotionally, some felt guilt for what they did or did not do or simply for their complicity, for being upset with the parents and their choices or lack of decision. In some cases, they felt some frustration and anger with parents’ decisions, with colleagues over communication breakdowns or disagreements about goals of care, or with the institution for not backing them. Some verbalized powerlessness and helplessness to influence the outcome. All felt sad for the parents witnessing the depths of their grief.
Mentally, they second-guessed themselves. They wondered if they made the right treatment decisions. They questioned their own judgment.
Spiritually, they struggled with a loss of control and finding meaning, experienced some crisis of their own faith and of their vocation, and felt some disconnection from colleagues, family members and friends.
Fortunately, the leadership of the intensive care unit in which I work recognizes how stressful this place of intense caring can be for staff. We know that moral distress is a given and a sign that we are conscientious caregivers practicing in very complex circumstances. We know too that the awareness, naming, validation, and acceptance of this very real stress, and the range of accompanying feelings and questions, as well as forums for expressing and discussing it, are vital for staff wellness.
At our institution, chaplains provide one-on-one check-ins with staff, facilitate debriefings, meet regularly with leaders at all levels throughout the hospital, and participate in other gatherings where open and honest communication is encouraged. With our well-developed listening and facilitation skills, our nonjudgmental perspective and willingness to ask the hard questions, chaplains play an integral role in addressing moral distress.
Jim Manzardo, BCC, is a chaplain at Lurie Children’s Hospital of Chicago.