In my previous post, I mentioned a “G-Tube” (Gastric feeding
tube) and I want to comment on that for a moment.
The lady at the restaurant told me about her neighbor who
had reached a point in his Parkinsons
journey where he couldn't swallow ….. so he had a G-Tube surgically placed for
nourishment.
I mentioned to Beckie, (my wife) that if I ever reach that
point, I DO NOT want to have a G-tube; I’d like you to understand why I feel that way. It all comes down to Palliative Sedation.
Ten years ago, in 2003, I was sitting with Bill (my
best friend), his immediate family,
Beckie and a lady from the local Hospice organization. We were in his living room listening to the
Hospice representative carefully explain about palliative sedation.
Bill was seated in his wheelchair beside me. He’d had a G-tube inserted months before,
through the skin, directly into his stomach.
He had not been able to speak for quite some time, and the decision to
place the G-Tube was made because he had such difficulty swallowing. Bill was near the end of a 6 year battle with
ALS - a terminal illness also known as Lou Gehrig's Disease - and we were
discussing hospice care.
At that point in time, I had not been diagnosed with
Parkinson's - didn’t have a clue what
was ahead for me. I thought I was
healthy and just wanted to be there for Bill.
I remember telling people that he was Moses and I was his Aaron - speaking for him as needed. We had reached the point where, most often by
his body language and his eyes, I could tell what he was thinking and I knew he was very anxious about this
particular gathering.
The lady from Hospice chose her words carefully, as each of
us tried to grasp the meaning of what she was saying. "When we reach the point where Bill is
very close to dying, and we know it's only a matter of days or hours," she
continued, "and there is nothing else we can do for him, the least we can
do is make him comfortable and not feel any pain. Once we put that in motion, however, it's
final. He will be sedated and in a state
of euphoria until he crosses over."
I realized that basically they would put him into an induced sleep -
feeling good - until his nourishment was depleted, which typically would only
be a matter of days. He would not know
anything after that fist injection.
There was a fly in the ointment, though. Bill had a G-tube...and according to Hospice
protocol, Hospice personnel can only be
involved when all other avenues have been exhausted. As such, a feeding tube disqualifies the patient
because it constitutes life support -
possibly extending his life for a very long time. The only way Hospice could step in would be
for Bill to get rid of the G-tube. Bill
wasn’t ready - at that moment - to go there, so it was a moot issue.
All of that background, hopefully, explains why I told
Beckie that I didn't want a feeding tube; I just want to go when my time is up.
I realize that the issue is not a simple one. We could probably effectively argue both
sides all night long...but that's my experience in a nutshell.
Oh yeah, on a lighter note, Bill and I would occasionally
each have a beer together before he had the tube inserted. One afternoon, while visiting with him,
G-tube intact, he indicated he wanted a Budweiser. I looked him in the eye and asked, " In
there?" He nodded, with a big smile
on his face. So……… I grabbed a 16-oz.
can of that brown Kool-Aid, popped the top, put a funnel on the tube, and we
took turns - a sip for me, a drip into the funnel for Bill...sip for me, drip
for Bill...each time the beer hit the funnel I quipped, "THIS BUD'S FOR YOU!
"And that," as Paul Harvey used to say at the end of
every broadcast, "is the rest of the story."
"Good Day!"
