My Battle with Merkel Cell Cancer

who seemed competent and caring. The oxygen level in dad's blood was dropping, and
the nurse bumped the oxygen percentage in the BiPAP mask up to 75%. He mentioned
that because dad didn't want to be intubated, once the oxygen percentage went to 100%,
we would be out of options to bring up dad's SpO2.
I again went over the DNR orders with the nurse during one of the periods when dad was
cogent. He told the nurse "I don't want you to code me under any circumstances." This
was apparently hospital shorthand for calling a code blue and trying to resuscitate him.
Dad was working pretty hard to breathe, and the nurse would periodically speak his name
quite loudly to make sure that he could be awakened.
I told dad I loved him, and that his granddaughter had asked me to tell him that she loved
him. My mom told dad she loved him. I kissed him on the forehead.
I told the nurse that dad is a doctor, mom has spent 50 years married to a doctor, and I
grew up in a doctor's family -- and we wanted him to not dumb down or soften the truth.
My mom suggested we have that discussion outside. We walked outside, and I bluntly
asked the nurse about whether I should go home. Basically, I told him that I knew it
wasn't the kind of thing he could give accurate percentages for, but I was trying to figure
out if it was more than 20% likely dad would pass away that night. If it was less than
about 1 in 5, I would go home so that my mom could stay with him overnight and I could
be with him the next day (I didn't want us to both be up for 24 hours, both fall asleep at
the same time, and have my dad pass away then -- so the question was whether it was
appropriate for us to keep him company in shifts). The nurse said that he had seen
patients in my dad's condition recover, but he'd also seen them decline very quickly and
pass away. He thought dad would probably make it through the night, but there was a
real chance he wouldn't. He then said that in my shoes, he wouldn't go home. I thanked
him then for his blunt advice, and I thank him now. Mom was also weighing taking shifts,
but at this point we were both expecting to be there all night.
** Email: Date: Wed, 18 Apr 2012 20:36:41 -0700
Subject: Update 20:33
He has central line and foley catheter. He is working extremely hard to breathe.
I spoke with the nurse outside the room and told him I didn't want to go home and have
my dad die while I'm home. He said in that case I should not go home. He said he didn't
think it more likely than not that dad dies tonight but that it wasn't a remote risk either.
Sent from my iPhone **
At some point, the nurse sought clarification of the DNR orders. He said that he
understood my dad did not want to be intubated or resuscitated, but suggested that if his
heart went into a bad rhythm, he "could be paddled" back into a normal rhythm. He asked
my mom what she thought, as she was the person with the final word when my dad
couldn't consent. I waited for a while, but I saw in her eyes that she knew my dad's
answer was "no" but that it was too hard to say that about somebody she loved so much.
I'm sure she would have eventually said it, but I stepped in and said "my understanding is
that dad wouldn't want that, isn't that right mom?" She just nodded her head in
agreement.
My dad's SpO2 kept dropping, and the nurse increased his BiPAP oxygen to 100%. The
SpO2 continued to drop. Some time around 9:30 dad stopped responding to the nurse
with anything but perfunctory acknowledgments, and by 10:00 he was not responding at
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