Dear Jewish Fairy Godmother:
My niece, age fifteen, was just diagnosed with a late stage brain
tumor. Within the first month, before they figured out what to do as a
course of treatment, she went blind overnight. They fixed that with a
colossal course of steroids, but at least she can see again. Now there’s
a choice of radiation or two kinds of chemo. Her parents have told my
niece that she can decide which to do. I think it’s crazy to leave a life
and death decision in the hands of an adolescent. especially one whose
thinking might be impaired by her disease. But I don’t want to add to
the horrific anxiety that‘s already dominating the family. I may be old
fashioned but I think they should just do whatever the doctor
recommends.
Scared Auntie
Dear Scared:
If the doctor thought one treatment plan was best, or even offered
better end of life quality, I’m sure s/he would have said so. By offering
the family choices, and choices probably accompanied by more
medical information and nuances than were conveyed to you, s/he’s
allowed some participation in a difficult and disempowering scenario.
The parents offer to their child mirrors that sense of at least a little
control over the horror, even if that turns out to be an illusion. So
assume, at least for the moment, that you don’t have all the facts. And that even if you did there is some merit in including the patient in the
process.
“Late stage” often implies that survival is unlikely. I think everyone
should have the right to choose, or at least impact, the degree of
suffering they are able to endure. What you might see as a reasonable
trade-off might seem unbearable for someone else. And while humans
are amazing in their ability to adapt and cope, if death is really the
inevitable outcome, I say your niece gets a big vote. But I’d agree she
should not get the only one. If her parents and the doctor agree on
one course of treatment, they should try to convince her it’s worth a
try first, and reserve a different choice for round two. Your job,
regardless of the choice, should be to support whatever they decide to
do, and be loving and gracious regardless of how the process plays
out, short run or long. My empathy to you all.