Abstract
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And then I went to work, where hours later I cared for a five-year old boy in his last few hours of life. I administered medications, sat with his mother, and watched as he took his final breaths. I called his primary physician to come and pronounce him dead. I worked alongside the chaplain and completed the required paperwork. I took a breath and said a prayer for his family and his physicians who knew him best.
And then I moved on to the next patient.
Being a palliative care physician means ministering to the dying and to their families. Throughout my pregnancy, I experienced many other similar days: one life growing inside me, as another ended by my side. Usually, the death was that of a child. The bittersweet pain of that dichotomy was never lost on me.
Before I was visibly pregnant, I made only one change in my practice: I stopped doing perinatal hospice visits. This was initially for my own mental health. Until I knew whether my baby was healthy, my greatest fear was that my baby and I would be eligible for enrollment in my own perinatal hospice program. Ultimately, though, I stopped for the duration of my pregnancy because it felt unkind to those families to arrive in their homes, evidently pregnant, and talk about their baby's death.
Late in my pregnancy, my team cared for a child with a multiply progressed, metastatic solid tumor at the end of his life. His parents brought him from Europe, seeking treatment. They refused to tell him he was dying, refused to allow us to discuss it with them or with him, and refused to allow us to see him, examine him, or speak with him. His mother was cachectic. She frequently physically collapsed under the weight of her grief. The behavioral medicine team contracted with her for her own safety in the context of her son's imminent death. She consistently asked us to oversedate her son when he did not endorse pain; we could not rely on her history to make medication changes. I visited one morning and reinforced that I needed to physically see him and examine him before changing his medications. His mother became incensed, and the interpreter stopped interpreting her words back to us. The bedside nurse gently asked her to continue to interpret the conversation. She paused and said, “She said, ‘You are pregnant with a healthy baby, God forgive me…’ I will not tell you the rest. You do not need to know.” My heart broke for all of them. I felt shame, and guilt, for being present in the devastation that was their world.
Most of the members of our palliative care team return home to healthy children at the end of the day. Families rarely ask personal questions of us; this is not a topic of discussion with them. But pregnancy is obvious, whereas parenthood is not. The dichotomy between “us” with (assumed) healthy children and “them” whose children are dying is never so apparent as during pregnancy.
A few weeks later, I attended a home death for a little boy in our hospice organization. His illness had been covered extensively in the media and a very large group had assembled, both in the home and outside the home, in expectation of his death. I was keenly aware of my pregnant belly at that time as well. Would his mother resent my pregnancy, even silently? Should I avoid these situations? There was no textbook for how to approach his care.
I am back at work now, the mother of a healthy girl, with a renewed and profound sense of empathy for the parents we care for. I'm excited to leave at the end of the day and to go home and be with my baby. And I'm thankful for the anonymity of this body, which distracts neither me nor my families from being able to do my job.