FEBRUARY 19, 1988

SCOTT ASKS FOR A "COKE CLASSIC WITH ICE"
ON HIS LAST DAY AWAKE

By Friday, February 19, 1988, Scott was off the respirator and had improved sufficiently to be transferred back to Babies Hospital from the NIICU.  I came up to the hospital to relieve Rena for the weekend.  She had been there all week.  In the room, Scott was in a good mood and was quite talkative.  The last words I recall him ever saying were:

"Dad, I want a coke classic with ice and a straw, please."

FEBRUARY 19, 1988 - APRIL 16, 1988

SCOTT REMAINS IN A COMA FOR FIFTY SEVEN DAYS

 No sooner had I brought him his drink, with the doctor's permission of course, he started to choke on it and we had to take it away.  He was so mad and frustrated at just being permitted to suck on ice chips. Then he started to have uncontrollable seizure activity, they put him back on the respirator, gave him a heavy dose of anti-convulsant medicine and took him back to the Pediatric ICU on the ninth floor of Babies Hospital and he never came out of this last coma which lasted fifty-seven days* until he passed away.

Still, we did not give up hope.  By March 3, 1988, Scott was off the respirator and was back on Babies 11 South in Babies Hospital.  We expected that any day he would come out of the coma, which we hoped had continued so long because of the heavy dosages of phenobarbital that had been given to him to stop the seizure activity, rather than from irreversible brain damage.  

MARCH, 1988

SCOTT'S CONDITION DETERIORATES

As March went on, Scott would stop breathing from time to time and the nurse would call an "arrest stat"**  After one of these episodes occurred on March 28, 1988, Scott was placed back on a respirator and transferred back to the Pediatric ICU.  His condition was getting worse but still we had hope.  Dr. Savitsky performed another tracheostomy on Scott that day to enable him to breathe easier.  

MARCH 28, 1988

WE ARE ASKED TO "PULL THE PLUG" THE THIRD TIME

After the "arrest stat" on March 28, 1988 and after Scott had been placed back on the respirator, a young doctor, specializing in anesthesiology, then temporarily in charge of the Pediatric ICU, insisted upon conferring with Rena and me.***  Dr. Gold thought that the conference was unnecessary because we had already opted not to take Scott off life support, but this doctor insisted upon speaking with us.  The conference had only been under way for several minutes when it was made crystal clear that she was trying to convince us to take Scott off life support or not engage in any more heroic measures in order to save his life.  Although frankly, I was getting weary and had lost substantial hope of saving Scott's life, Rena was adamant and insisted that all measures be taken to save Scott's life.  I told the doctor that what ever decision we made it would be joint and that I would not overrule Rena or even attempt to convince her to change her mind.  At this point, the doctor, obviously realizing that she had to convince Rena, stated:

 "Don't you realize how selfish you are being, insisting on prolonging your son's life - you continue to think of him as your child but he is no longer your child, he is now only an organism."

I was shocked at this cruel insensitivity.  Dr. Gold cringed in the corner of the room and both of us waited for Rena's reaction - would she scratch her or spit at her?

Rena was surprisingly quite composed as she immediately but curtly responded;

"Well, Scott may be an organism, but he's my organism and you are reported to be a good technician so please use all of your skills to take care of my organism and keep him alive."

I was so proud of Rena for standing up to this doctor and I was simultaneously ashamed of myself for having been willing earlier that day to "pull the plug" upon the request of the doctors who gave us that choice.

Up until this time, neither Dr. Gold or Dr. Carmel had told us definitively that Scott was terminal.  This was a topic that we chose not to talk about and I suppose that both Dr. Gold and Dr. Carmel chose not to volunteer information to us concerning this very difficult subject, except on the occasions when other doctors brought the issue up.^***

MARCH 29, 1988

AGAIN WE ARE ASKED TO "PULL THE PLUG"

 

The next day, March 29, 1988, I was summoned from my office to attend another meeting at the Pediatric ICU, this time chaired by the doctor, permanently in charge of the ICU.  Dr. Gold sat quietly at my side, together with Scott's ICU nurse and the nurse in charge of the ICU.  This doctor also did not pull any punches and proceeded to tell me that my son was in a vegetative state and that he was taking up bed space that could be used to cure another sick child.  Upon my inquiry however, he could not tell me with any degree of medical certainty whether Scott was in a permanent irreversible coma or whether it was drug induced and could reverse.  Under these circumstances, Rena and I continued to insist upon continued life support for Scott.  We did not appreciate the increasing pressure we were getting from doctors we did not know to end Scott's life.  Neither Rena or I could bear the thought that we might never be able to kiss or touch Scott again after voluntarily bringing his life to an abrupt end.  

Only after Scott's passing, did I learn why these two ICU doctors had put Rena and me under pressure to withdraw life support from Scott.  It seems that there was a section in the Presbyterian Hospital "Policy and Procedure Manual," dated "12/1987," reading:  

"CRITERIA FOR DISCHARGE FROM THE PICU  

 

Patients will be discharged from the PICU upon written orders from the Unit resident after consultation with the attending physician and/or Medical Director.  Discharge of patients from the PICU shall occur when the child is physiologically stable and does not need the level of nursing care delivered in the PICU.  

Specifically, the child shall have:  

1)  Stable heart rate and blood pressure not requiring...vasopressors for the support of blood pressure, or intravenous infusions for the control of hypertension.  

2)  No significant respiratory impairment...  

3)  No imbalance of fluid and electrolytes.  

4)  No requirement for intravenous anticonvulsant to control seizures other than maintenance doses.  

5)  Stable intra-cranial pressure.  

6)  No condition expected to cause acute deterioration in organ function in the immediate future. 

Exceptions to the above criteria are recognized in children transferred from the PICU (1)...(2)..., and (3) where support has been withdrawn from a patient following discussion and decision by parents and physician with documentation of this course in the patient's chart." [emphasis supplied]  

 

That day, March 29, 1988, I realized that I was supposed to orally argue an important appeal on March 30, 1988 in the United States Circuit Court of Appeals for the Second Circuit.  After hearing what the doctors had to say, I called the Court at approximately 4:30 P.M. to request an adjournment of the appeal, which under the Court's rules, could only be "for grave reasons" at this late date.  The clerk was very sympathetic but stated that the decision to grant the adjournment could only be made by the three judge panel who had been assigned to hear the oral argument the next day.  She took my telephone number in the ICU and said that she would call me back shortly with their decision.  When she called back minutes later, she was crying on the telephone and asked me not to hold it against her because the judges had declined to grant the adjournment and wanted to know immediately whether the papers would be submitted without oral argument or whether I intended to show up the next day and argue.  I told her to tell them that the decision as to whether I appeared before them the next day would be made by a higher authority then them and would depend upon whether or not my son was alive the next day.

Dr. Gold wrote to the learned Court, at my request and his letter, dated March 29, 1988, reads as follows:  

"Honorable Judges:

This letter is written at the request of David A. Goldstein, Esq., the lawyer for the...Plaintiffs-Appellants, who is the father of my patient, Scott Goldstein, who I have cared for continuously since April, 1977.

Scott has a malignant central nervous system tumor involving brain and spine.  This has resulted in multiple brain and spinal surgeries, Chemotherapy and Radiotherapy.

Scott, has been hospitalized numerous times at Columbia Presbyterian Medical Center the latest of which commenced on January 29, 1988 as a result of a serious, life threatening complications.  Yesterday, he suffered a cardiac arrest requiring an emergency tracheostomy and hypotension that required heroic measures.  Scott's illness is terminal and his death could come at any time.  The emergency medical staff conferenced this afternoon an\d advised the parents that his condition took a turn for the worse and both parents were advised that they should maintain their attendance as their son's condition was critical.

If there are any questions relative to my comments, please feel free to contact me.

           Sincerely,

                    s/Arnold P. Gold, M.D. 
                    Professor of Clinical Neurology 
                    Professor of Clinical Pediatrics

---

*  from February 19, 1988 - April 16, 1988.

** a hospital code broadcast over the hospital PA system, signifying that a patient has gone into cardiac arrest and needs immediate life saving attention.

***  I was in fact summoned from a sick bed at home to attend this conference.

****     For example, on April 9, 1987, in the NIICU or as on July 15, 1987 in the "crash room' in the emergency room area of the hospital or on March 28-29, 1988 in the Pediatric ICU.