by John LawrenceThis article is about the shoddy treatment of one lady by San Diego's Sharp Health Care. Her name is Donna Lichtenfels. I interviewed her by phone on Saturday, May 18. This article is based on that interview and also input provided by her daughter, who has experience in the medical field, via email. Donna was an employee of Sharp Health Care. She had gone to work there in the corporate office in August 2011, and, as a condition of her employment, she had to take Sharp Insurance called Sharp Health Plan. She had no choice in that. It was a condition of her employment. Donna has worked in the health care field for over 30 years. She started working in the field for Blue Shield of California as a claims adjuster and in fraud and abuse. She has worked for physicians and major hospitals all over the US. She also has written for several web sites, including OpEdNews, Winning Progressive and Daily Kos under her pen name, Jillian Barclay. She currently is too sick to write.
Last July after a mammogram and a biopsy, she was diagnosed with breast cancer. According to her daughter: "At the time my mother was diagnosed with breast cancer, she was being congratulated by Sharp providers because the lump had been found so early. After her mammogram (and an erroneous letter from Sharp congratulating her for a normal mammogram) and biopsy, she was informed that she was at a stage zero. This was wonderful news!
"[The surgeon] wanted my mother to have a scan prior to the lumpectomy surgery in order to ensure that there wouldn’t be any surprises when he performed the surgery. When my mother showed up for her scan, unbeknownst to her, the scanning machine was broken; yet, the Sharp staff proceeded to inject my mother with the dye. She was then informed that she would have to reschedule because the machine was broken. Apparently having the scan elsewhere (even at another Sharp location) was not an option.
"When my mother went in for the second time, the scan could not be performed because my mother had a previous neck surgery which included instrumentation. She was unable to maneuver her neck into the proper position required for the scan.
"Scheduling the surgery proved to be extremely difficult, and this is where my mother’s care by Sharp seems to spiral downward quite quickly, and my mother falls into some deep, deep crack and can’t get out. Presently, she is still stuck in this crack which is better described as a sink hole.
"The surgeon’s plan was that my mother would have her scan and her surgery would be performed after he came back from vacation. This was a matter of a couple of weeks."
Standard of care calls for surgery within a few weeks, but the surgeon kept going on vacation.As Donna said, "The reason you find breast cancer early is so that you can get it early." She talked to her prior doctor at Scripps who told her that Scripps' guidelines are that the surgery should occur two to three weeks after having been discovered. However, when she had not been scheduled for surgery by mid-September, she complained because she knew the cancer was growing.
She called the surgeon scheduler and said "When am I going to be scheduled for surgery?" She was told, "Look lady, you're not the only person with cancer." Donna said, "I understand that, but I'm becoming concerned." The surgeon scheduler said, "Well, you know other people need this surgery too." To which Donna replied, "Sharp advertises for patients constantly. If they cannot handle the patient load that they have, why do they keep advertising?"
Donna's daughter said, "The surgeon’s scheduler is either unable to perform one of her job duties, which is scheduling surgeries, or the Sharp facilities/doctors are not large enough to handle the Sharp patient case load. I believe both to be true."
The surgeon went on one vacation. Donna was told the surgery would have to wait until he came back from his second scheduled vacation since he was booked until then. Finally, exasperated with the delays, Donna called her boss at Sharp. He was pissed, the Business Director was pissed, the head of Employee Health was furious. Some Head Honcho called or emailed the surgeon’s scheduler and read her the riot act. Donna was then scheduled right before the surgeon left for his second vacation. She would have to wait till he got back. When surgery was finally scheduled, approximately two months had lapsed from the time of diagnosis.
Her daughter commented: "My impression of the Sharp outpatient surgical floor was immediate: a factory.
"I stayed with my mother in the room while she was being prepped for surgery. It was a very small room, and only one of us was allowed to be with her. I realized how chaotic everything was in the back — people hustling and bustling and even employees talking about ... what they were planning to do on their lunch breaks — so I decided that I would be able to bring my brother and sister in the back without anyone noticing.
"So that’s what I did. I walked out to the waiting room, grabbed my brother and sister and we all three casually walked into the back without anyone asking any questions. And no, we were not dressed in scrubs.
"As with most patients prior to surgery, my mother was extremely nervous. When the anesthesiologist came in, I expressed to him that my mother was anxious and nervous. I requested that he give her something to calm her nerves — this is something that is normally provided. He refused."
"The surgery wasn’t very long. It was scheduled in the noon hour and was completed before 1:00 PM. Sitting in the waiting room, I would see surgeons come out and visit with family members explaining how the surgery went. This did not happen with my mother’s case. It dawned on me later that the reason for this was because he squeezed my mother’s surgery into his lunch hour due to the Sharp Head Honcho e-mail. [ed.note: Donna had used her employee contacts at Sharp to get an earlier surgery date.] Lunch was the only open slot before his next vacation."
After the surgery the surgeon did not speak to her or her kids. She found out later that the surgery disclosed that the tumor had doubled in size. She went into surgery with the expectation that a lumpectomy would be performed. As it turned out, they did a partial mastectomy. The doctor had not informed any of Donna's family that the surgery had been more extensive than planned.
Donna's daughter wondered: "I wonder about two things: If the surgery had been performed in a timely manner, would the cancer not have spread? Secondly, if it was known on the day of the surgery that the mass had grown much larger (however, [this would have been tantamount to] admitting an error in delaying surgery), would a mastectomy, then, have been the appropriate course of treatment, and would the cancer not have spread?"
On the way home from the hospital, Donna noticed that during the surgery they had knocked out a tooth and given her a fat lip. "My mother also complained about being extremely sore—not at the surgical site—but all over her body to include her arms and legs. These complaints, in my opinion, were in line with being dropped, nearly dropped or handled very roughly, all which would have occurred during a bed transfer." No explanation was forthcoming. When Donna talked later to the surgeon, he told her he had no idea how that had happened. She filed a complaint with Sharp's Quality Assurance only to be told that the doctors there were individual contractors, and, therefore, Sharp was not responsible. Having worked there as an employee, she knows this is a lie. They are paid a salary by the same people that she was paid a salary by.
After she got home and some time had passed Donna noticed that she had a wound infection from the surgery. She called the hospital and was told that she was in luck. It so happened that her surgeon was on call that weekend and he would for sure call her back. He never called. Later he told her that he was not on call. There is no way to prove this because all hospital records are confidential. Even when the matter was taken up with Quality Assurance, there was no way for Donna to resolve this because all Quality Assurance deliberations are confidential. She said, "All complaints that I've made to Sharp have gone on deaf ears." She continued, "They don't treat you like a whole person. Everybody passes the buck."
"My mother wrote a complaint to Sharp about her Sharp Experience. She received a letter explaining that PART of the complaint would be addressed at some board meeting and she would not be privy to any of it including any action that might be taken. The letter also informed her that other PARTS of her complaint needed to be sent to such-a-such a place and such-a-such a place, because apparently certain aspects of care are handled by different entities despite the whole fiasco occurring in one place. If I remember correctly, the letter indicated that she would need to write these complaints separately, because Sharp would not be forwarding the complaint to the proper entities."
A PET scan showed the cancer had spread to her lungs. She went on radiation therapy. After two weeks of radiation she went in for a CAT scan which discovered there was a mass in the lungs which they had not told her about. She went back to the radiation oncologist and asked to see the CAT scan herself. That's how she found out about the mass. The oncologist told her "At this point the Tumor Board is going to meet." The Tumor Board said that the (by then) three masses were too close to the heart to do a normal biopsy.
"My mother had gone from a stage zero to a likely stage-four cancer case in a matter of months."
In order to determine if it was indeed metastatic breast cancer or a separate lung cancer, the oncologist pushed for a very risky open heart procedure just to get a biopsy. Even with a biopsy, treatment would not change. Either way the chances for survival are not that great. Donna refused the open heart surgery. She stopped radiation and went on Arimidex, a hormonal therapy, which made her very sick. Her body swelled up to three times its normal size. She could hardly talk. She could not walk. Her oncologist decided to take her off Arimidex and wanted to start her on Temoxiphen.
"My mother was put on a chemo drug called Arimidex. There were two choices: Arimidex or Tamoxifen. Arimidex was chosen because it was thought the side effects would be less severe than the other drug. My mother began coughing, her voice was very hoarse and her legs swelled so badly that she was referred for a Doppler to determine if there was a blood clot. The side effects of the drug worked quite quickly."
"She complained to her primary care doctor about ... back pain. The Primary Care Physician (PCP) refused to increase her pain medication and/or change her pain medication. Diagnostics were not ordered to even confirm my mother’s reason for excruciating and debilitating back pain.
"Her primary physician also explained she was unable to fill out paperwork for a handicapped parking permit, because the state, for some reason, had taken away this privilege. I conclude that this was done because English is the physician’s second language. There is a language barrier and a problem with communicating, especially on paper, exactly what is going on. The PCP has a problem with forms."
Tamoxifen has been known to cause back pain, but Donna's back pain was due to a different problem that she had had for years. Nevertheless the oncologist decided to take her off Tamoxifen. The oncologist did not order diagnostics in order to determine the etiology of the back pain, whether it was from the Tamoxifen or from an unrelated condition. At this point she had no treatment plan for cancer.
"My mother called me the next morning hysterical. She said that the oncologist had mentioned that discontinuing her meds might allow the tumor in her lung to grow more rapidly so a biopsy could be performed. I instructed my mother to continue the treatment, because no course of treatment and/or no treatment plan seemed outrageous and unsound medical advice.
"I instructed her to call up her ortho from Scripps to obtain any CT’s and MRI’s that were performed on her spine in order to prove to the Sharp physicians that my mother has a severe back problem that needs to be addressed, and to prove that the back pain is not related to the cancer treatment; therefore, restarting the Tamoxifen would be appropriate and life extending. I told my Mom I would go to the PCP office visit with her.
"The years’-old MRI showed that there were disc bulges and protrusions in her lower back in the area of her complaints. The PCP seemed to have a sudden realization that, wow, my mother was actually in pain and was not a drug-seeking patient after all.
"I explained to the PCP that not only would my mother need an appropriate course of pain meds to control the pain, but that she should be taking the Tamoxifen for the cancer since the back pain was not related to the chemo drug.
"The PCP was quite perplexed. Was the radiation therapy already completed, she asked. I was astounded that the PCP had no knowledge of the radiation therapy being stopped despite my mother seeing her on a regular basis. I explained to the PCP why the radiation therapy had been terminated, that Tamoxifen was prescribed and was just discontinued due to this obviously unrelated back pain.
"'No treatment?' She asked me.
"I shook my head, no.
"'No treatment?' She asked aloud again.
Again, I shook my head.
"'No treatment.' This time it was an amazed statement."
"The PCP did not address the Tamoxifen during this visit. She did not say whether to start up or discontinue (it’s not her place apparently). She did, however, increase the pain meds slightly and referred her to a specialist. This referral, however, was put on hold for a few minutes while the PCP posed to us a question, “But what if the specialist says that surgery is indicated?” The PCP was basically saying that if my mother didn’t want a surgery, then what is the point of seeing a specialist?
"I explained that we will deal with the treatment plan when we find out exactly what was going on, but that a major concern, for me—as my mother’s daughter—was the Tamoxifen being discontinued for no reason and having the cancer spread more rapidly. I attempted to have the appointment with the specialist scheduled. I waited nearly 30 minutes at the receptionist’s desk while she attempted to get in touch with the specialist’s office to schedule an appointment. I would have waited until it was complete, but my mother was extremely exhausted and she was in obvious distress due to the back pain.
"The receptionist expressed forced exasperation for my behalf at not being able to speak with anyone, and she was obviously not happy that I was looming over her during this process. I also got the feeling she needed to go to lunch since she began every sentence with “they are all probably at lunch”. I was assured that my mother would be contacted with the appointment date and time later that day. My mother was never contacted that day or any day thereafter. Out of sight and out of mind.
"My mother just recently had her visit, which I believe she scheduled herself. The specialist informed her that she has a large cyst at the base of her spine which is causing the extreme pain — and of course the pain is compounded by the disc bulges and protrusions. Getting rid of this nasty cyst would be a major surgery and surgery is not an option, according to the specialist. The pain is expected to progressively worsen and my mother will be wheelchair-bound eventually. Still, no handicapped parking permit, and still a struggle with the PCP for pain meds.
"At this visit, my mother apparently broke down and began to cry when the specialist refused to fill out her disability papers. He told my mother that she needed to have her PCP fill out the papers. He [finally] did fill them out for her because the tears worked.
"The disability is another problem, but it goes to show that the Sharp doctors have no understanding of anything outside their boxes. My mother explains it best when she says that each physician treats one piece of her, and there is not one Sharp physician that treats her as a whole. I additionally wonder if Sharp realizes that she is a person with a family, and not just a case.
"The oncologist rationalizes that he is unable to put my mother out on disability because he has patients with stage four cancer that continue to work. Why can’t she? Perhaps she should see the ortho for her back and have him fill out disability papers for her back problem. Or maybe her PCP should fill out the papers?
"Her PCP refers her to the oncologist since she has breast cancer or the specialist for her back despite the specialist visit being a consult."
Donna related, "But all through this whole thing there has been no coordination of care. My primary doctor was shocked when she found out two months after I stopped radiation that I wasn't doing radiation therapy. She had no idea. There's been no coordination of care and I think that that is what I'm most upset with. In all of their advertisements they tout that they have coordination of care, a cancer care coordinator that makes all of your appointments for you, does this, who does that. Not true. It doesn't happen."
Donna's daughter again: "Throughout this time, my mother has been put on disability and taken off of disability so many times that it has impacted the amount of money she collects. Each time she receives a smaller check. Nobody wants to step up and fill out the paperwork.
"Understand, this is for TEMP disability when what my mother really needs is PERMANENT disability. I have told my mother to schedule an appointment with her physician she used to see at Scripps in order to have that physician fill out permanent disability, and that I will pay for everything in cash."
Donna has been on medical leave of absence from Sharp since last October. Her history of serious spinal degeneration has made it nearly impossible to walk. She is diabetic and has other chronic medical issues as well that have been largely ignored by Sharp. From the very beginning of her treatment, there have been serious medical errors made and no one will address them. Now, the lack of coordination of care is affecting not only her health but her financial situation as well.
"So the last visit that I had with my oncologist was on April 22. He had received a letter from Sharp, my employer, asking him to fill out paperwork for an extension of my leave of absence. I brought him a copy, on that date, of the paperwork just to make sure he had it. I stressed the importance of getting this back to my employer. He promised me, he assured me, he would ... and he did not send in the paperwork to Sharp, my employer, his employer, and I just last week got a letter from Sharp saying that, because my doctor did not send in the paperwork, I was considered to be vacating my position. So I am no longer employed by Sharp."
Donna's daughter relates: "Nobody wants to fill out any paperwork. It’s out of their boxes. For icing on the cake, the oncologist failed to fill out some paperwork from Sharp Human Resources. As a result, my mother received a certified letter from her employer indicating that the lack of response from the oncologist indicates, to Sharp, that she has voluntarily vacated her position (which is why she is on Cobra).
"My mother is now paying for Cobra. I believe this is $600 monthly. Because she has been on temporary disability, she does not qualify, at this point, to receive Medicare. Ideally, the paperwork needs to be submitted for permanent disability so she does not have to worry about the extra expense of Cobra, as well as the depletion of the Cobra. She should not have to worry about who will be willing to fill out the papers for the next extension of, my God, TEMPORARY disability. My mother should not have to worry about how to pay her bills to maintain the standard quality of life for basic necessities like water, heat, and her self-prescribed Pepto-Bismol since Sharp is not addressing her rapid weight loss."
Donna's last visit to the oncologist was April 22. He kept pushing for an open heart biopsy and she said no. Donna said, "You don't biopsy someone if the surgery is going to kill them."
Donna said: "I've never seen anything like it. I've NEVER SEEN anything like it, and I was shocked and even the people that I worked with were shocked. And every time I would ask someone, a fellow employee, 'give me the name of a good doctor at Sharp', [they said] 'ah well I wouldn't recommend my doctor'. Now that's not a very good recommendation coming from an employee."
She has no choice but to stay with Sharp physicians and Sharp Health Care. She said, "All complaints that I've made to Sharp have gone on deaf ears." She continued, "They don't treat you like a whole person. Everybody passes the buck."
This is the Sharp Experience. It takes two months just to get an appointment with a specialist. Despite the shoddy experience and lack of caring Donna experienced, Sharp advertises on its website, "We are now an organization filled with passionate, determined and caring people — all dedicated to transforming the health care experience for our patients and their families." This is totally false according to Donna. The Sharp Experience she experienced was uncoordinated, uncaring, a lower standard of care than is common in the industry.
Donna told me, "In all my years of working in this field I have never experienced such substandard, negligent medical care. I don't know if I have just been unlucky or if this is a system-wide issue with Sharp. The lack of coordination of care seems to be the root of the problem." At Sharp the right hand doesn't know what the left hand is doing. There is no coordination among the various doctors responsible for her health. The oncologist doesn't communicate with the primary doctor who doesn't communicate with the radiologist who doesn't communicate with the surgeon who doesn't communicate with the ortho. Nobody seems to know what is going on. In Donna's words, despite all the TV advertising Sharp does, "The Sharp experience is not a good one. Sharp is a sham."
Because of her extensive experience, Donna says, "I know a lower standard of care when I see one." I asked her if she thought Sharp had a financial incentive for the shoddy care she received. She said "no" although Sharp Health Care is all about maximizing profits. They are always asking for donations even from their employees. Their nominal non-profit status is basically a sham as it is for most other non-profit hospitals as was debunked by Steven Brill in his exhaustive Time article, "Bitter Pill."
However, I question whether there might be a financial motive in delaying Donna's surgery and for her uncoordinated care. In her case, no money changes hands at Sharp. If she gets a PET scan, since Sharp self-insures, it's something Sharp basically does for free, and I think that is the catch. Just as the shoemaker's children are the ones that go without getting the holes in their shoes repaired, there is no money in it for Sharp to take care of their employees who are on the Sharp Health Plan. They have a financial incentive to take care of those who are on Medicare or private insurance because they represent money coming into the system. In Donna's case, as she said "no money changes hands."
Under her pen name Jillian Barclay, Donna, has written extensively about the health care industry. This is from her bio on HubPages:
"My work experience has mostly been in the financial end of healthcare, either tracking fraud and abuse for one of the largest insurance companies in the country or maximizing money for doctors and hospitals. I also spent a fair amount of time acting as a utilization review coordinator for a now defunct Medicare Advantage program (losing that job because I saw fraudulent treatment denials for senior citizens and reported it to the FBI). I also successfully sued that corporation because of their practices. I have worked as a Patient Advocate, helping people who don't know how to handle denied claims or treatments."
Donna's daughter ended her writing to me as follows:
"My mother attempted to find legal representation. Nobody wants to take on Sharp, and she was also told to tell her kids to come back after her death in order to revisit the possibility of a case. Every day that goes by, my mother has less and less energy. I have tried to push her into finding a smaller-time attorney who would be successful in obtaining a small monetary settlement just so she is able to live without worry. This is what I want for my mother. I don’t want to hear the fear in her voice about not being able to afford her meds, electricity, etc.
"Most of all, I just want my mother to receive proper treatment, because the care from Sharp has been sub-standard, at best. It literally is a nightmare that nobody should ever have to deal with."
It's ironic that someone like Donna who has been a Patient Advocate, who has helped numerous people deal with fraud and abuse in the health care system, should now be in the position of needing help dealing with the very health care system she has helped so many others deal with.
Update from Donna: Had a brain MRI yesterday (June 11), no results yet, AND I stopped in at Human Resources - I explained the oncologist's promise to send in the necessary paperwork- she was shocked that he had not done it and told me that if I get better, to come back and they would "probably" rehire me. She said "it was never a performance issue."