Regularly reassessing goals of care is necessary during critical illness. This can help families maintain hope and realistic expectations.
In a perspective piece in the NEJM, “Please look at my baby: when physicians should use the word hospice,” Golda Grinberg reflects upon her experience of refining her goals for her baby within the context of a medically complex and uncertain future. As a pediatric palliative medicine clinician, I meet many parents walking a similar path. For these families, pediatric hospice programs offer a way to discover comfort and well-being within extraordinary circumstances. Parents meet the idea of hospice with a myriad of emotions. Grief, sorrow, and defeat are often entangled with liberation, determination, and relief.
Despite the resiliency of youth, children’s bodies still have limits. Not all diseases are temporary, and some diseases have to be lived with rather than eliminated. Even when done under the well-intended veil of optimism, overlooking these realities deprives parents of the opportunity to redefine what it means to give their child the best life possible. This agency is a vital connection to hope.
The “responsibility to try every modern medical intervention,” which Ms. Grinberg articulates, exists within our culture’s definition of what it means to be a good parent. This value is shared when we define what it means to be good clinicians. As clinicians, we often desire certainty – certainty of disease progression, certainty of harm, certainty that this is the right decision – before challenging the core belief described above. When decisions deviate from the perceived responsibility “to try everything medically possible” the accompanying sense of failure only dissipates when people are given permission to change their hopes. I wonder what it would feel like to hold our limitations as facts rather than faults. Would it be easier for ICU teams to have the comprehensive and “open conversation” Ms. Grinberg desperately needed?
Just as ECMO can’t turn an 80-year-old man into a fit 25-year-old, modern medical interventions can’t guarantee all children live long and happy lives. Of note, not living long doesn’t immediately equate to dying. For children facing terminal and progressive disease, parents decide what constitutes health and well-being from a pool of imperfect options. Some will choose machines, multiple surgeries, or as one of my favorite adolescent patients desired, “being cryopreserved until medicine can fix it all.” Others will choose bubble baths instead of serial casts, smiles instead of adequate weight gain, or that their final breaths be of fresh New Mexico air. None of these stories reflect weakness in spirit, failure as parents, or clinician inadequacy. They highlight the reasons why prognostic uncertainty, rather than certainty, is the more appropriate trigger for pause and comprehensive reflection. Through honest reassessment, new hopes can emerge.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.