Home | Forward | Contact Info APRIL 9, 1987 - THE FIRST
TIME WE WERE ASKED TO On
Thursday, April 9, 1987, I was with Scott alone at the NIICU
as we had planned. We
were somewhat apprehensive because, among other things, Dr. Gold was
in Moscow where his daughter was giving a violin recital.
This was expected to be a particularly bad day since Scott, who
was now off the respirator and sufficiently stabilized, was to be
given his first course of chemotherapy.
Rena was with the Sedakas, waiting anxiously for word as to how
Scott tolerated the chemotherapy. I recall clearly, sitting in a chair next to Scott's bedside
in the NIICU with my head lying on it against his leg and holding his
hand. He was awake but
rather quiet and I was sobbing as I reviewed in my mind the long road
of Scott's illness over the last ten years and the uncertainty of
where we would be going in the future.
As I sobbed quietly, Scott suddenly said "Daddy, you're
crying." I asked him
if he knew why I was crying and Scott immediately responded
"Because I'm your only child."
And to think, at times, the doctors would inquire whether Scott
knew he was dying. As
the morning went on, Scott lapsed into a coma and his breathing
gradually became more shallow. A
subclavian catheter was surgically inserted to permit easier venus
access for drawing blood and giving chemotherapy. I was standing by the window just staring into space in a
melancholy way. I felt
sad in a general sense but not particularly alarmed by Scott's
deteriorating condition. Certainly,
I wasn't thinking that this was the end.
After all, I had been warned that this was going to be a
difficult day and I just assumed that the difficulties that were
occurring had been anticipated by the medical staff as well. One
of the young pediatric neurologist fellows came up to me and engaged
me in conversation. She
seemed upset and was very businesslike and in fact, cold.
She asked me if I was aware that Scott's breathing was becoming
more shallow; that he might have to be placed on a respirator again;
and that she wanted to talk to me about the issue of consent.
I quickly responded that I was aware of it; and that I had no
problem with consenting to put him on a respirator again since it had
worked well for him after the recent brain surgery.
She became somewhat agitated and said "You don't seem to
understand. I want you to seriously consider consenting not to place
him on the respirator." I was absolutely speechless for a moment or two.
I couldn't believe what I was hearing.
She wanted me to consent to "pull the plug" when only
the day before, she and all of the other doctors were talking so
optimistically about how chemotherapy might just be the treatment to
save Scott's life. I said
to her "Let me see if I understand you correctly - I assume that
you are telling me that you no longer have any hope of saving Scott's
life or even prolonging it?"
She said "You got it - you can see for yourself that he
has taken a turn for the worse."
I said "But I don't understand, yesterday you were so
confidant and today you're giving up - what happened between yesterday
and today that caused you to do a 360 degree turnaround?" She
stated that it was evident that he wasn't going to survive but even if
he did for some short time, with the aid of a respirator, which no
doubt would be permanently required, what kind of a quality of life
was that to look forward to. I
told her that I would have great difficulty inaccepting what I was
hearing from anyone, especially someone with whom I had no prior
relationship and I asked her to send for Dr. Carmel.
I called the Sedakas and told them what had happened and to
bring Rena to the hospital immediately [without revealing the details]38 Dr.
Carmel arrived at the NIICU, looking grave, spoke to the doctors,
reviewed the charts, observed Scott and came over to my side to talk
to me. I felt comforted
by his presence, because I had such confidence in him. He started the conversation by saying "I guess you
realize that Scott is not doing gloriously today, but it was
anticipated." He
then went on to say "If his breathing doesn't improve in the next
couple of hours, we will probably want to put him back on the
respirator for a short time - but don't be alarmed by it - because he
would have to be placed on the respirator tomorrow anyway when we take
him up to the operating room, as planned, to internalize his brain
shunt." Now I was
really confused after what the pediatric neurology fellow had told me
and I angrily replied to Dr. Carmel "What are you going to do,
tie up the ribbons before you place him in a box?"
Dr. Carmel looked at me strangely and said "what do you
mean by that?" I
told him that the other doctor said that the medical staff had given
up any hope in saving his life and I had been asked to consent to
withdraw life support and accordingly I couldn't understand the
inconsistent messages I was hearing - "why bother to internalize
a shunt of a dying patient?" Dr.
Carmel was furious and demanded to know who had told me that.
He said that no doctor other than he or Dr. Gold had a right to
discuss such important issues with me - and that even though he was
not certain as the ultimate outcome, he was far from convinced that
Scott's condition was as grave or terminal then as she had made it
appear. He went on to
tell me that young doctors often tend to panic when things go bad with
a patient and immediately and prematurely become obsessed with ethics
issues rather than management of the patient.
He referred to her reaction as "the panic reaction of a
young inexperienced doctor to an isolated clinical observation."
He said "Why didn't they consult with me first - I'm only
one of the world's leading authorities on hypothalamic surgery - I've
only written a book and 38 articles on the subject - I would have told
her that Scotty is experiencing one of the anticipated triphasic steps
following hypothalamic surgery and that hopefully the pendulum would
swing back again." Dr.
Carmel insisted that I identify the doctor who had asked me to in
effect "pull the plug" to which I replied "Look, I
don't want to get anyone into trouble - chalk it up to a learning
experience in a teaching hospital."
Dr. Carmel never at a loss for words, quickly replied "I
can't teach in this teaching hospital if I don't know who my student
is." At this point,
I had already partially identified the doctor by referring to her as
she*
and felt that it wasn't fair to have the other female doctor under
suspicion so I reluctantly told Dr. Carmel her name.
Dr. Carmel took her aside and spoke privately to her.
This was the first time during ten years of Scott's illness,
that I had been confronted with making an immediate decision of
whether he lives or dies and it really frightened me.
I thought to myself what about kids and other patients who
don't have their parents or other family members present to prevent
premature death by arbitrary decision rather than God's will.
We would later be confronted on several other occasions and by
several other doctors with similar experiences. NEIL
SEDAKA SINGS WITH SCOTT IN THE ICU AS
HE COMES OUT OF A COMA
Scott
was not placed back on the respirator that day because his breathing
improved without it and the chemotherapy came to an end.
While Scott was still in a coma however, Rena and the Sedakas
had arrived. Since the
number of visitors at bedside were limited and I had spent a great
deal of time with Scott in the NIICU alone, I felt it only fair for
Rena to be with him alone and I waited outside with the Sedakas, and
admittedly enjoyed a good delicatessen sandwich after not eating all
day. After
a while, Rena came out and said that she had been singing Sedaka songs
to Scott and that she thought that he had moved his lips.
We all quickly went into the ICU, rules or not, and Neil
started to sing some of his songs to Scott at his bedside, at first
very quietly so as not to disturb the other patients.
We all noticed that Scott's lips were moving and Neil sang
somewhat louder. When
Neil stopped singing momentarily, Scott continued the melody in a loud
tone. Before long,
Scott's eyes had opened and he was singing Neil's songs loudly.
By this time, the ICU nurses had gathered around and we were
all locked arm in arm, singing Neil's songs in chorus - The protocols
and decorum of the ICU be damned.
I remember the woman in the next bed from Scott had just come
down from surgery and still had an oxygen mask on her face.
She turned slowly to this most unusual scene - pulled the mask
up with her hand - and said "Isn't that wonderful."
We were all in tears. By
the next morning, Scott had miraculously improved a great deal.
He was sitting up, eating some jello and drinking Hawaiian
Punch. Rena came up to
the hospital and they were having a grand old time hugging and
laughing as if nothing had happened. Dr. Carmel happened to stroll by and remarked to me
"There's the kid at death's door - these young doctors get me so
angry sometimes." Later
that day, Scott was scheduled for a shunt revision.
Although one of the less rigorous surgical procedures Scott had
been subjected to, nevertheless it involved surgery and general
anesthesia with all of the attendant risks that go along with it and
all of us were usually apprehensive before surgery.
I had left the hospital for a short while and when I came back,
Scott was being wheeled from the NIICU to the operating room,
accompanied by Rena and Dr. Carmel.
She didn't see me at first and Dr. Carmel motioned for me to
stay back. Rena spotted
me anyhow and shortly, we were all on the way to the operating room
suite. You would never
know that Scott was going for surgery the way he and Rena continued to
joke and laugh with each other. Both
were in a good mood. It
was quite evident that Scott was feeling much better.
At the operating room suite, Dr. Carmel, with a twinkle in his
eye, handed us both masks [which Rena took without flinching] and told
me that it would not be necessary for me to sign an "informed
consent" form which had already been done by Rena.
We both initially thought that Dr. Carmel was inviting us to be
present in the operating room**
before the surgery began. Why
else would he hand us the masks?
As it turned out, they were given to us as souvenirs, in
recognition of Rena's participation in the pre-surgery process.
This was the first time that she had signed an "informed
consent" form and she was prepared to enter the operating room
with Scott. It took real
courage for her to overcome the fear of participating first hand in a
tense situation [surgery] and Dr. Carmel, in his own way, was
recognizing it. Both Scott and I were so proud of her. During this time in April, 1987, I had to negotiate a new office lease and move my office. When I look back I don't know how we did it. Rena decorated the office beautifully, and later Scott visited it and enjoyed being at what he called "NY Law". *
only two female doctors present. **
Previously, I had been invited to dress in surgical garb
and to enter the operating room itself with Scott, at least until
Scott was under sedation - this kind gesture did much to alleviate his
fears of surgery while simultaneously giving me a feeling of being
involved. |