If My Dying Daughter Could Face Her Mortality, Why Couldn’t the Rest of Us?
December 03, 2024 at 04:05AMSarah Wildman has written several beautiful pieces about her teenage daughter Orli’s death from cancer. This might be her best yet. It is an examination of the ways in which cultural discomfort about discussing children’s mortality influences end-of-life care, leading often to confusion and a sense of abandonment:
One afternoon, a palliative care doctor stopped by and lightly offered what she called a “back door” to home nursing: hospice. Under Obamacare, she confided, children may continue curative efforts concurrently with hospice, a prospect unavailable to adults. (She apparently did not know that, in our case, hospice insurance benefits did not include general home nursing.)
I was driving when a hospice intake nurse called. Orli, I told her, was just about to enter an experimental drug trial, and I understood she was entitled to receive hospice services while continuing curative or life-extending care; she could even leave hospice if she improved. The nurse acknowledged all that was true. But, she added, You know they told me she has six months to live, right?
No, I said. You’re the first to tell me.
After Orli was discharged, an oncologist caught me in the hallway. I heard you didn’t finish the hospice intake, she said. I told her the story—the nurse, the car, the prognosis—and asked: Is it true? Does she have six months? She didn’t quite answer. That’s an antiquated way of thinking about hospice, she said. She did not say: Sarah, we cannot predict when death will occur, but we have discussed that there is no cure. Orli will not survive. Nor did she say: The idea of hospice may inspire panic, but studies have shown it can actually extend life.
I have told this story many times to my sister, herself a nurse practitioner in oncology. Each time she asks: If the doctor had said bluntly, “Sarah, she’s dying,” would I have been able to hear her? I have told her: Honestly, I do not know. Maybe not. But that’s not the conversation we had.
from Longreads https://longreads.com/2024/12/02/if-my-dying-daughter-could-face-her-mortality-why-couldnt-the-rest-of-us/
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