Dr. Abecassis is in charge of the liver transplant program at Northwestern Memorial. Like Dr. Shah at Loyola, Dr. Abecassis doesn’t like patients and family members who ask questions. Once we had exhausted family members and friends with blood types matching Linda’s, we wanted to know how the process of screening strangers who volunteered to be prospective donors for Linda was going to be managed, so we could keep on top of the process and lose no time in finding a donor to save Linda’s life. On July 2, 2009 Lori Clark notified us that the last friend who had volunteered was rejected as a prospective donor for Linda. We had already been in touch with a number of people who matched Linda’s blood type from the web site, and we e-mailed them to send in their questionnaires right away.
We contacted Lori Clark, Lori’s boss Sarah Plaskett, and Sarah’s boss Gwen McNatt with our questions about how we could speed up the donor screening process, and were merely told there was nothing we could do to make it go faster. We had many questions the three women could not or would not answer, so we asked for a meeting with Dr. Abecassis to discuss our concerns. We even sent him this list of written questions so he could prepare for the meeting:
Questions regarding Linda:
1. How long does it usually take for a person seeking a live donor liver transplant to find and qualify a suitable donor candidate?
2. How many prospective live donors usually need to be screened before a suitable donor candidate is found?
3. What should I tell prospective donors who call Lori Clark and don't get a call back because she is already in contact with another prospect ahead of them in the queue?
4. How often do I need to contact prospective donors to keep them interested when they have sent in a questionnaire to Lori Clark, and phoned her, and have received no response for several weeks?
5. What percentage of all the patients who get listed on a liver transplant list die before getting a transplant?
6. What percentage of patients in the live liver donor search process die before finding a suitable live donor and getting a transplant?
7. We are in contact with 26 prospective donors with blood type O willing to be evaluated for donation to Linda. How do you suggest we keep them all informed and interested when the process of contacting and evaluating a single donor takes so many weeks, and no one will give any information to the other people in the queue about where they stand or what they should expect?
8. What is the reason prospective donors are not allowed to use E-mail to communicate with Lori Clark?
9. We understand that we are responsible for assisting prospective donors with travel arrangements when they are scheduled to come to Chicago for testing. How do you expect us to do this when we are not given any information about who is coming and when they are scheduled to be here?
11. We have been told that it is the policy of Dr. Abecassis and his team not to let patients see the written protocols for the process of screening and processing prospective live liver donors. How can we explain to prospective donors what they should expect in the way of timing, and the screening process, if you refuse to share this information with us?
12. Everyone tells us we need to cooperate and work together in the process of seeking and finding a suitable live liver donor for Linda, yet we are completely locked out of information about how the process is supposed to work. How can you expect our blind cooperation with a secret process you will not permit us to know or understand? What ever happened to the concept of informed consent?
A meeting was arranged among Dr. Abecassis, Dr. Flamm, Linda, me, Lori Clark, and one of the lawyers from Northwestern Memorial, to discuss these questions. However, once everyone was seated in the meeting room, Dr. Abecassis opened with a tirade about how “toxic” it was for us to question his screening process, how he didn’t have to be Linda’s doctor if he didn’t want to, and how if we didn’t like how he ran things we could find someplace else to get Linda a transplant. He had Linda in tears before anyone else could say a word. I responded that I thought our questions were reasonable, and that I meant no offense, I just wanted to do everything Linda and I could to keep the process moving along while we waited for them to do their work screening prospective donors. Dr. Abecassis made it clear that we were not to ask any more questions of his staff or him, and that he was neither going to answer the questions we had submitted, nor let us see the written protocols they followed in screening prospective donors.
After Dr. Abecassis finished, Dr. Flamm told me and Linda that once she had her transplant he would no longer be involved in her care, and that every patient getting a liver transplant at Northwestern Memorial became a patient of Dr. Abecassis and Dr. Abecassis’ team once the transplant surgery was performed. That was most disheartening news, and Linda cried again. She was still in tears when we left the meeting.
Following that meeting I settled into a routine of maintaining E-mail contact with the 94 prospective donors who eventually turned up from the web site, and waiting for Lori Clark to let us know when someone was invited in for testing, and then whether or not that person would be an acceptable donor. This process of exchanging E-mails with prospective donors continued steadily from July 2, 2009 through May 11, 2010.
Meanwhile, our difficulties with the Northwestern Memorial health insurance and billing systems continued, as you can see:
Tuesday, July 28, 2009
Patient Financial Services
Northwestern Memorial Hospital
251 East Huron Street
Chicago, Illinois 60611-2908
Re: Linda
Medical Record Number: 102125333
Account Number: 000210265690-001
Gentlemen:
I want to bring to your attention the outrageous billing error which has caused great grief to my wife, a patient who has been on the liver transplant waiting list at your hospital since March 27, 2003. For that entire period of time, she has had Blue Cross / Blue Shield PPO insurance through her employer, and she has also been covered under the Blue Cross / Blue Shield PPO Family plan through my employer. Linda carries both Blue Cross PPO cards with her whenever she is seen at your hospital or by one of her doctors there, and the people who check her in always make photocopies of both her insurance cards at every visit. Nevertheless, we have been plagued time after time with errors which result in us being billed by your hospital for amounts we do not owe under the terms of your PPO agreement with BC/BS due to the fact that BC/BS is both primary and secondary insurer for Linda.
However, the most recent billing outrage was far worse than most. When we got home from work Monday night we were greeted by a form letter from your hospital declaring that according to your records, Linda has "no health insurance for these services" and enclosing a bill for $2,997.00 for Linda's ascites paracentesis performed in the interventional radiology department of your hospital on July 9, 2009.
It happens that I was with Linda on July 9, 2009 when she checked in with interventional radiology on the fourth floor of the Feinberg Pavilion for her paracentesis. Each of us presented our BC/BS PPO cards to the attendant at the check in desk, and we stood there and watched him photocopy both cards before returning them to us. He assured us that this information would be passed along to the billing department, after we pointed out to him our past difficulties having your hospital correctly bill both the primary and secondary insurance for services to Linda.
Now, less than three weeks later, it appears this information has been lost or destroyed somewhere in your system, and we get a frightening letter informing us that you don't think Linda has any insurance at all. This error occurred despite written communications from your hospital dated 2/26/09, 3/18/09, 3/25/09, 4/21/09, 5/15/09, 5/25/09, 6/12/09 and 7/22/09 acknowledging that Linda has both primary and secondary health insurance coverage through BC/BS PPO. After the lengthy and detailed financial review we were subjected to in 2003 when Linda was placed on the transplant list, and given that each of us has had the same BC/BS PPO insurance consistently since that day, it is impossible for us to understand how this could happen.
Linda's principal concern in this matter is that mistakes by you of this nature could interfere with her care and treatment at your hospital and by the doctors on the transplant team there. Your hospital's inability to deal competently with simple insurance information makes us wonder what happens to the large volume of medical information, lab results and imaging studies accumulated about Linda over the last six and a half years, and whether the systems responsible for recording and preserving that information are as unreliable as your billing systems. Linda is getting sicker day by day, and as you can imagine, her emotional well being is not improved by incidents like this. Nor is mine.
Linda expects to get a live donor liver transplant very soon. Her doctors are now in the process of testing and evaluating potential live donors. Our insurance is paying for all the donor testing, surgery and postoperative care. If a letter like this were to be mistakenly sent to a prospective donor during this process, causing that person to withdraw from participation, it could literally be a death sentence for Linda. Please get in touch with me immediately, and let us know what we need to do to make sure this situation has been corrected, and to assure that things like this never happen to Linda again.
* * *
This letter had no success in resolving the billing difficulties, so I had to write another to someone higher up the chain of command:
August 8, 2009
Mr. Andy Scianimanico
Director, Revenue Cycle
Northwestern Memorial Hospital
251 East Huron Street
Chicago, Illinois 60611-2908
Via Fax To: 312-926-4184
Re: Linda
Medical Record Number 102125333
Various "Account" Numbers
Dear Mr. Scianimanico:
I received two letters from your hospital yesterday, both of them most discouraging, and both continuing to reflect your department's inability to get things right. We are done dealing with you. If your bosses Mr. Harrison, Mr. McCanna and Mr. Murphy continue to refuse to speak to me about the situation, I guess we will just have to let the juggernaut you have launched take its course until we end up in court over these accounts. Be assured, however, that when that does happen, should you persist in your attempts to collect money we do not owe you, we will be filing counterclaims for violations of the federal Fair Debt Collection Practices Act, as well as for the emotional distress you continue to inflict on Linda, who as you clearly know is dying of end stage liver disease, and is stressed and upset every time she gets a letter from your hospital incorrectly claiming she owes you money.
Permit me to remind you of the repeated occasions on which you have already broken promises you made to me in person on Tuesday, July 28, 2009, and again on Monday, August 3, 2009, that you would put a hold on Linda's account so she would not get any more bills or dunning letters until after her transplant. Despite those promises, yesterday evening Linda opened yet another dunning letter dated July 31, 2009, but not postmarked until August 4, 2009, a day after you promised me in writing that her account would be put on hold. A copy of this letter, threatening that Linda's account "will be referred for collection," and the envelope it came in with the postmark August 4, 2009, is attached to this fax. Once again, your promise to put a hold on Linda's account appears to have been meaningless and worthless.
Upon arriving home from my office yesterday evening, I also found your faxed letter dated August 7, 2009, insisting that the bill for hospital services to Linda on January 18, 2008, is correct and that we owe you $1,186.20, as stated in the dunning letter Linda received. You contend Linda's policy pays nothing for hospital services she receives at your hospital because Northwestern is "out of network with Blue Cross Select." If this is so, how do you explain the stream of explanation of benefits forms (attached) reflecting payment of claims by Linda's BC/BS policy for hospital services and physician services on January 25, 2008, March 31, 2008, May 23, 2008, June 17, 2008, September 2, 2008, September 3, 2008, October 28, 2008, November 21, 2008, January 13, 2009, February 19, 2009, February 20, 2009, February 20, 2009, March 6, 2009, March 20, 2009, April 3, 2009, April 14, 2009, and May 8, 2009? I note in particular that your hospital was paid $553.61 by Linda's policy, as primary, for services January 13, 2009, and an additional $560.59 by my policy as secondary for the same services on the same date.
Unless Northwestern dropped out of the Blue Cross Select network for a single day on January 18, 2008, I do not see how the information in your fax could possibly be correct.
Monday morning I will be in Mr. Harrison's office, hand delivering copies of this letter, all of the attachments, and all of our previous correspondence, to Mr. Harrison, Mr. McCanna and Mr. Murphy. Should they persist in their refusals to speak with me about this matter, I will be walking south down Fairbanks Court to the NBC television studios to speak with reporters about Linda's plight. WGN radio studios are just around the corner from NBC, and as I walk back towards my office I will pass the ABC television studios on State Street and the CBS television studios on Washington Street. Someone will be interested in this heartbreaking story about how your hospital's billing department is ruining what could be the last days of Linda's life. Health care reform legislation is a very potent news hook right now.
I have tried to be cooperative and non-threatening in my efforts thus far to resolve this matter quietly between our family and your hospital, without bringing outside parties into the conversation. Your letter threatening to turn Linda's account over to a collection agency has changed that climate irrevocably. Your continued breach of your repeated promises to put a hold on bills and dunning letters regarding Linda's accounts at your hospital leaves us no choice but to enlist all the allies we can, and bring to bear all the resources at their command.
I tire of cobbling together sheaves of paper containing information which is already resident in your hospital's computers, but which you apparently do not look at there, nor read when I sent the paperwork to you. Be assured that the last papers you receive from us will be my hand deliveries Monday morning. After that, papers from us to you will be delivered by the Cook County Sheriff.
I had sincerely hoped that our dealings would not come to this juncture, based on my last conversation with you, last Monday morning. That was clearly a vain hope. I beg you and your superiors to take advantage of next Monday's final opportunity for a rapprochement.
* * *
By the time of these letters regarding billing, Linda had changed jobs. The franchisees who owned her Sylvan store in Oak Lawn sold their business back to Sylvan Corporate, and Linda ended up working for Huntington Learning Center in LaGrange Park, Illinois. Fortunately, Huntington also had health coverage through Blue Cross/Blue Shield, so her insurance coverage was uninterrupted. Linda continued to work through the end of September 2009, when the encephalopathy caused by her liver disease began to take its toll on her brain, and her colleagues called me at my office to come and pick her up, because she was disoriented, and was not sure even who the other teachers at the center were. I drove her home, and her doctors advised that it was time for her to take disability leave.
We continued to work with Lori Clark and our 94 prospective live donors from the web site. Eventually, over the period from July 2, 2009 to April, 2010, eight of these people were invited to Northwestern for final testing, and traveled here to complete the process. The first seven who came to Chicago were rejected for one reason or another. Meanwhile, Linda’s ascites continued to progress, and by the beginning of 2010 she was going to the clinic every Tuesday for a paracentesis to take 6 or 7 liters – that’s as much as 15 pounds – of fluid off her abdomen. A wonderful nurse practitioner named Rebecca Duke did this procedure every week, with an absolute minimum of discomfort to Linda.
There came a time in the spring of 2010, however, when Linda was hospitalized on the day her paracentesis was scheduled. I asked the doctors if Ms. Duke could come over to Linda’s hospital room and perform the paracentesis, but they said no. So, when the time for Linda’s clinic appointment arrived, I put her in a wheel chair and took her down the elevator and across the indoor lobby to the doctor’s office building, and up to the clinic to see Ms. Duke. When we arrived at the clinic, we were told that Linda could not have the procedure done there, since you are not allowed to be both an inpatient and an outpatient on the same date. So, I had to take Linda back to her hospital room, where the paracentesis was performed by a resident, with a needle rather than a catheter, with a great deal less skill than Ms. Duke used. It was very painful for Linda, and did not get all the fluid off her abdomen.
It seems odd to me that a health care provider who is qualified to perform a paracentesis in a clinic is somehow not qualified to perform the same paracentesis on the same patient in a hospital room in the very same building. This is health care bureaucracy at its worst.
Meanwhile, our troubles with Dr. Abecassis multiplied by several orders of magnitude. The eighth stranger from the web site who was invited to Northwestern for the final testing was approved as a live donor for Linda, in April, 2010. In January, 2010, Dr Abecassis saw something on a non-contrast abdominal film of Linda which he thought might be a stenosis, or narrowing, of Linda’s celiac artery. This is the blood vessel which the new liver would be connected to in a live transplant for Linda. He wanted to do a CT scan with contrast dye to better define what was present in Linda’s celiac artery, but, since Linda is allergic to the iodine based contrast dye, he said there was no reason to make the film with contrast until a live donor matching Linda was located and approved.
Well, once the eighth prospective donor to be tested was approved – a young man from Minnesota – Dr. Abecassis scheduled a CT with contrast for April 21, 2010, for the sole and express purpose of seeing whether there was a problem with Linda’s celiac artery which would make it impossible for her to have a live donor transplant. After Linda was premedicated with Benadryl and Prednisone, the CT with contrast was done at Northwestern on April 21, 2010. On May 3, 2010, we were advised that Linda’s live donor transplant was scheduled for May 18, 2010. We thought everything was going to go as planned.
On May 5, 2010, Linda was at Northwestern’s liver clinic for her weekly paracentesis. Her serum sodium was alarmingly low when the clinic drew her usual labs, and we were told she needed to be admitted to the hospital right then, so her electrolytes could be treated and improved in preparation for her transplant on May 18. After getting her settled in her hospital room, I went home to pack some clothes for both of us, and I stayed in her private room with her throughout the rest of her stay at Northwestern.
During the first two weeks of May, 2010, Dr. Flamm and his team treated Linda’s low sodium level with intravenous solutions, and had limited success getting her level closer to normal. They wanted to prescribe a newly approved sodium conserving diuretic for Linda but there was considerable controversy with Blue Cross/Blue Shield about how Linda would get the drug. The pills are very expensive – hundreds of dollars apiece – and BC/BS wanted Linda to get them from its mail order pharmacy in Minneapolis. However, the Minneapolis mail order pharmacy did not have the drug in stock, and getting it from there would have meant three days of delay in starting Linda’s treatment. After two solid days on the phone with BC/BS, the mail order pharmacy, the Northwestern Hospital pharmacy, and the wholesale distributor of the drug, we worked out a compromise where the hospital pharmacy would start Linda on the pills, and if she were discharged, the hospital pharmacy would deliver the balance of the prescription pills to the Walgreen’s pharmacy in the hospital building, where Linda could pick them up on her way home.
Once the drug prescription issue was resolved, we thought we were in the clear for a transplant operation on May 18, but it was not to be.
On May 10, Linda was still in the hospital. One of Dr. Flamm’s colleagues came to Linda’s room on rounds that morning, and told us: “The surgeons are coming by tomorrow to talk to you about Linda’s operation.” Of course, two teams of surgeons are needed to take part of one person’s liver out and put into another patient. We knew the surgeons assigned to Linda’s case would be Dr. Abecassis and his colleague Dr. Baker. Knowing the past difficulties we had with Dr. Abecassis, I specifically asked Dr. Flamm’s colleague to “send Dr. Baker, and not Dr. Abecassis, as Dr. Abecassis does not like me, and having him be part of the conversation could cause problems.”
Nevertheless, the morning of May 11, both Dr. Baker and Dr. Abecassis came into Linda’s room on their rounds and sat down. Without any introduction whatsoever, Dr. Abecassis said to us: “I looked at Linda’s CT with contrast yesterday, and her celiac artery is occluded. She can’t have a live donor transplant now, or ever.” I politely asked him why it took him three weeks since the film was made on April 21, for the express purpose of finding out whether or not Linda could have this life saving operation, to even look at the pictures. Why did he allow the surgery to be scheduled for the 18th if he hadn’t even looked at the film? He grumbled: “I’m not apologizing for the delay,” and stalked out of the room. We were left to ask Dr. Baker whether this meant they were just going to let Linda die, or whether there was something else we could do.
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