It's supposed to go like this: you raise children, they grow to adulthood, and you die first. Then they raise their own children, and the cycle repeats. Simple, timeless. But when a child dies, the natural order of things is disrupted. Nothing is the way it's supposed to be, and everyone -- parents, siblings, caregivers -- is forced to grapple for meaning.
Sarah was diagnosed with an impossibly rare form of abdominal cancer when she was 17. She spent two years in treatment while struggling with ever-increasing pain. In addition to the chemo, she had a catheter placed in her spine and a pump implanted under her skin. The pump and catheter bathed her spinal cord with painkillers and local anesthetics. And she had IV painkillers going all the time. Nothing worked to contain the cancer, and nothing worked to dull the pain. Eventually, she was using enough pain medication plus Valium-type drugs that she slept pretty much all the time. She kept getting chemo and kept being admitted to a nearby hospital for pain spiraling out of control. Nothing worked, so six weeks before she died, Sarah's parents elected to enroll her in our hospice program.
Almost immediately Sarah needed admission to our inpatient unit, only hours after her opioid requirement had escalated significantly. Her arms and legs were twitching so hard that I thought she might bounce out of her hospital bed if the rails weren't up. I diagnosed something we call opioid-induced hyperalgesia (which I blogged about three years ago in "The Perils of Arrogance") and treated her with fluids, anti-twitching drugs, and stopping her pain medicine temporarily. She improved in a day or two and eventually went home. Her hospice nurse and I visited several times. She'd recovered enough, her mom and dad told us, to return to being a cranky adolescent -- which they saw as a big improvement.
Six weeks after enrollment, and about ten days after a big 20th birthday party in her own backyard, she returned to the inpatient hospice unit. She was barely conscious and barely breathing. Four hours later she was gone. I put my stethoscope to her silent chest, turned to her family, and said, "I'm sorry for your loss." There were tears and hugs, of course, and they continued at her funeral, which many of our hospice staff attended. Her mother told me later, "You gave us back our daughter for six weeks, and we are grateful."
I've had more trouble writing this post than any other since I began blogging over four years ago. It's not that, as a hospice and palliative medicine specialist, I haven't cared for other young patients (see "Angel" from August 2009), although Sarah has been my youngest. But I, too, have grappled for meaning in this case of a teenager whose life was cut short way too soon. Perhaps it's because I have two daughters only a little older than Sarah. As I cared for her and her family, it was easy -- all too easy -- to imagine myself in their place.
I was glad to know that my team and I gave Sarah and her family a chance to interact for a few short weeks. I can only hope that, given the circumstances under which we met, it was enough. Yet for me her death has left a hole in the universe that has not sealed, an ongoing disruption in the natural order of things.