Sunday, October 19, 2008

My letter to CHOP's Customer Service

My son is a patient of Dr. Doolin, and we have been treated extremely poorly and lied to or mislead for weeks now.

We have been under the care of the pediatric oncology center at St. Barnabas Hospital in Livingston, NJ, since my son's diagnosis at the end of June. Our oncologist has been in communication with Dr. Doolin since August about performing David's second surgery.

Dr. Doolin's office has been informed, numerous times, that it is extremely difficult for us to get to Philadelphia. We live in northern New Jersey, which is approximately two hours away. My wife and I are both teachers, which means that it is extremely difficult to get out of work to come see Dr. Doolin: it means taking a full day off of work, and - considering our infant with pediatric kidney cancer - those days are in short supply.

Compounding this is the fact that Dr. Doolin has not been communicating with us; he has been communicating with our oncologist. All those communications have occurred after 5PM, meaning that we have been unable to communicate with him at all.

On Thursday night, we received a call from our oncologist. She told us that Dr. Doolin had just called her (at 5:30PM) to tell her that David was going to receive a biopsy. He was not to eat after midnight and could receive clear fluids until 7AM. We should plan to pack for 3 to 4 days, depending on the results of the biopsy.

This was the culmination of several weeks' worth of talking between Dr. Doolin and St. Barnabas Hospital. My wife and I took the following day off from school, packed our lives into our car and headed off for Philadelphia. Our families were preparing travel arrangements to help, which included my brother preparing to take a day off of his job as well as my mother-in-law preparing to take time off of her job. They measured David's weight and height and sat us in a room to await the doctor.

Dr. Doolin's office had no intention of doing a biopsy on Friday. They called us down to SCHEDULE a biopsy. They asked us for information that they already had from our prior visit in September and from the paperwork that St. Barnabas had forwarded. They didn't examine David, just showed us the pictures of his CT scans (which we already had been shown weeks earlier) and told us the procedure that would be happening (which we already had been told about a week earlier). Then, we waited 45 minutes for the surgery scheduler and were forwarded to the Anaetesia Resource Center. Mind you, the baby still hadn't eaten since 9PM, and it was not 10:30AM - something that is cruel to do to one so young.

When we arrived at the ARC, David was weighed and measured - again, 2nd time of the day, with the same results. We were then left alone, with a hungry 13-month old, in a six-by-ten office. We waited an hour and a half, in that small room, for a nurse to come examine us. She asked us the same questions that they asked us upstairs. The sum total of the "examination" was touching him with a stethoscope five times. That much time in such a small area is cruel to do to a child that young.

Here's my problem: I feel that we have been lied to and mislead by CHOP. We informed the office - numerous times - of the difficulties that we have getting to CHOP for daytime appointments and asked - numerous times - to have the exams on the same day as the biopsy. My doctor was told that we would have the biopsy, and the only thing that happened was the taking of information that SHOULD have been done via telephone. Not a single thing happened during that day that could not and SHOULD not have been done via telephone.

To compound the annoyance, the parking attendant was quite rude to us and gave me 17 singles in change when we paid for parking.

Friday was my last family illness day - which means that if I want to spend time with my baby in the hospital, it will cost me $327 per day - on top of doctor's fees, gas, tolls and parking - to see him.

I am immensely disappointed in CHOP. This hospital has a sterling reputation, and - frankly - all I saw was a cold, impersonal place that is inconsiderate to my family's needs. All I have seen is a hospital too arrogant to communicate with us or the caring doctors at St. Barnabas who have been responsible for David's care up until now.

I don't expect anything to change, because at this point, we're stuck with the uncaring, inconsiderate bureaucratic nightmare that is CHOP. I'm writing this in the likely-vain hope that SOMEbody cares enough to even send me an e-mail saying, "I'm sorry that you were treated badly on Friday."

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