Denial Of Service Re: Bonnie J. Troescher
This is a letter I sent to the insurance companies about
their "denial of service" for various treatments. It could well serve as a
model for your situation -- since health insurance companies ALL have the same
problem -- they have to work within a fixed amount of income, responding to
claims and requests that will ALWAYS be higher than the income - Bonnie is doing very well -- here is the most recent photo taken of her -- just a few days ago. We feel the cancer has been defeated, but we also want a PET scan to prove that, and even then will not stop using the remedies on into the future. Karl Loren
August 4, 2004 Secure Horizons Dear Sirs, Bonnie J. Troescher has had many various treatments relating to cancer of the esophagus, her admission to Hospice Care and her continuing inability to swallow. Lakeside Medical Group provides the primary medical care under the larger coverage of Secure Horizon. Bonnie has received numerous delays and refusals to provide service which is medically necessary, not experimental and the best course of treatment. In fact, the insurance authorities have even denied a valid “second opinion.” This is now an emergency matter and calls for response and action in a very short time. This letter is written by me, husband of Bonnie. I hold the Advanced Directive, signed by Bonnie on June 16, 2004, for health matters for my wife. Background Situation: Bonnie was diagnosed with esophagus cancer in late February 2004. She had three CAT scans covering the beginning and end of a two month period – the CAT scans showed no change in size of the mass during this time and showed it at about 7 cm by 2 cm. A later PET scan showed no metastasis as did a laparoscopy. There was something called “local invasion.” There were other tests, some of which I have copies of the reports. Her conventional program included 28 radiation treatments, given over a 42 day period, during which she would be on 5FU 24/7 by infusion pump, 24x7, and two treatments of Taxol and Carboplatinol, one given at the beginning of all treatments and one at the end of three weeks. She had most of these treatments, but Memorial Day weekend was a rough week and when she saw the Oncologist the Tuesday after Memorial Day, he took her off the 5FU, and sent her to the hospital for a two-unit blood transfusion. She then refused to go back on the 5FU and the Oncologist wanted her to take “some” chemo, and proposed further treatment with Taxol and Carboplatinol. Bonnie never agreed to those further chemo treatments and eventually told the Oncologist she would never go back on any type of chemo – that she would prefer to allow the cancer to kill her. The radiation was interrupted by Bonnie’s hospital visits (three days, two visits) and an out-of-calibration machine. Ultimately, after 20 radiation treatments she refused to have any more – with the same story that she would rather die from cancer than have more radiation and die from that. Since the announced likely survival rate, before treatment, was less than 20%, and since there were interrupted treatments Bonnie’s thinking on this was that chemo and radiation didn’t offer much hope at the start and refusing more after interruptions would not change things very much. She also felt that the pain and physical deterioration caused by chemo and radiation were worse than death. Her last hope was surgery. At the beginning of this process the surgeon, Dr. Renner, told us that he might be able to do a “clean resection” after chemo and radiation – the Oncologist (Dr. Arzoo) said “we are looking for a 50% shrinkage of the cancer after radiation and chemotherapy.” He indicated that it would then be up to the surgeon as to whether or not Bonnie would be a good candidate for surgery. The Oncologist reported that the last CAT scan, done about three weeks after the last radiation treatment, showed “at least a 30% shrinkage.” (A more accurate measure was not possible because the before and after CAT scans were done on different machines. There could well have been the “at least 50% shrinkage” described by the Oncologist as a good indicator for then doing surgery.) The surgeon told Bonnie that she was “not a candidate for surgery,” that if he did do it it would be an 11 hour operation with 30 days in ICU and a 5% chance of survival, and that it was not up to him, but up to the Oncologist. At the time Bonnie felt this was worse than a death sentence and asked the Oncologist for recommendation for admission to the Hospice Program. He denied that service, encouraged Bonnie to continue with more chemo therapy and when she absolutely refused those further treatments, he wrote an official letter, dated June 24, 2004, dismissing her as a patient and indicating that he had referred her for psychological counseling. In this letter he referred to a doctor at UCLA for a successor to his service – an apparent clear indication that UCLA is considered to be within the “network of physicians” covered by the insurance provider. The Primary Care Physician agreed with Bonnie’s assessment of the situation and recommended her for entrance to the Hospice Program. The second physician, at the Hospice also agreed and she entered the Hospice program. The radiation doctor, Dr. Hoffman, at the beginning of treatment, told us that radiation would eventually cause her to not be able to swallow; but that two weeks after radiation stopped she would begin to swallow and three weeks after she would be able to eat. That turned out to not be true. Well over 6 weeks after the last radiation, about 5 weeks after the last chemo, Bonnie was not able to swallow her own saliva, much less drink water or eat. She has been on a feeding J tube for food and water since about two weeks after radiation started. She is still dependent on this J Tube as of this writing. The inability to swallow was such a debilitating problem that Bonnie was again willing to die rather than suffer more time in this condition. From our own observation and extensive research it seemed very likely that the swallowing problem was NOT directly caused by cancer, but more likely by the radiation and possibly by scar tissue caused by radiation. It appeared to us, and initially to the Hospice staff, that palliative care should cover treatments that would relieve the swallowing problem. Bonnie then, and now, is not interested in any further chemo or radiation directly intended to “cure” or remove the cancer. We believe that our spiritual faith may have caused a change in that area, but are not asking for any acknowledgment of that cause of change. However, the palliative care we sought was denied by the Hospice people who said that Bonnie should, rather, leave the Hospice program and go back under the regular insurance coverage – which she did. This “denial” was presented to us as if it were a “good thing,” that we would get more and better care by leaving the Hospice Program and returning to conventional insurance coverage. Her interest was and is the palliative relief of the swallowing problem, not any further chemotherapy or radiation treatment for cancer itself. We now think that the surgeon’s opinion (5% survival chance) was a deliberately false opinion caused by that surgeon’s advancing age, inexperience with this type of surgery and great reluctance to do the surgery. I would not quite call this “mal-practice” but it was, in our opinion, deliberately misleading information that was the direct cause of Bonnie’s discouragement and decision to enter the Hospice Program. It was yet another “denial of service.” This same surgeon did two “less than professional procedures” on Bonnie – one was the improper installation of a “Porta Cat” and the other was a non-standard “J Tube” insertion. We have filed the proper forms with our Primary Care Physician to not be sent back to him for any service. I have done enough research on the web to understand some terms and possibilities, and offer the following suggestions as a layman, certainly not as a health professional. v Bonnie has moved out of the Hospice to her standard Secure Horizons, Lakeside Medical Group, and insurance coverage. v Within that coverage Bonnie got the authorization for a “swallow test” using an X-Ray and barium. That test was done and showed a blockage in the esophagus. Bonnie was able to swallow a small amount of the Barium and has since improved in her swallowing so that on some days she can swallow soup, water, but no food. v Because of the good news about (1) no increase in size of cancer before treatment, (2) no metastasis, and (3) at least 30% shrinkage, it seem unlikely that this blockage is caused by live or growing cancer. v It could well be caused by scar tissue – since I find that radiation is often reported as causing scar tissue – and the radiation was exactly on the esophagus area. v However, it would be dangerous, in my opinion, to do any further investigation that might aggravate live cancer, if it exists in the area where it had been, so I would think a PET scan would be necessary to reveal if the obstructive material is cancerous or not. I understand, for instance, that a PET scan can differentiate between scar tissue and cancer. v If there is no danger of aggravating any existing cancer mass, then an endoscopy may well be the right further palliative treatment, using any of the usual mechanical means of enlarging the esophagus for either a permanent or a temporary enlargement, and allowing swallowing. Bonnie signed a form asking for an alternative doctor from the doctors who did endoscopy on her – three times. She, of course, would not return for treatment of any kind from Dr. Renner or Dr. Arzoo. v There may also be a possibility of laparoscopy for which the purpose could be to remove any non-cancerous material and to remove scar tissue – but we would want an informed opinion that more scar tissue could be removed by laparoscopy than might be created by the procedure. She would certainly not accept this from Dr. Renner. v There may even be a possibility of the more traditional surgery to accomplish a clean resection – but Dr. Renner is not an acceptable surgeon for that procedure. (I also wrote a letter of complaint about Dr. Quilici, surgeon, who is not an acceptable source of treatment or opinion.) v I feel it is standard, and in our case necessary, to get a second opinion on any or all of this. I would hope that the insurance would cover that second opinion, at UCLA, and hopefully with a Dr. Milana Dolezal, a Fellow in the Oncology clinic. I do not know her, but she is highly recommended by another doctor I trust.
Denial Of Service The denial of service has been both subtle and blatant. Much of the denial takes the form of “apparent sloppiness” or “mistakes” with “authorization forms” that are “lost” or slow or modified in such a way as to require a re-submission. Full proof of these bureaucratic and deliberate delays would require a full audit of many of these documents – some of which might well disappear, or be modified, before any formal investigation could be applied. It has been obvious throughout these months that insurance coverage would take a long time for approval. In fact, it was obvious that Dr. Arzoo had Bonnie admitted to the hospital twice, and even told us that he could get tests and procedures done immediately once she was in the hospital – but not if he had to seek insurance coverage. There were several times where a request for insurance on some procedure was claimed to have never been received by the insurance company, but later there was documentary evidence that it had been received. We found this type of documentary evidence that directly contradicted claims made later, either verbally or in writing by the insurance company. The final denial of service was so blatant, and so well documented that it must be reviewed and corrective or punitive action taken regarding the insurance companies. The official description of a patient’s rights is worded:
There were many “denials of service” and other violations of the above patient’s rights, but during the initial period we were too concerned about staying on the “right side” of doctors who held Bonnie’s life in their hands. I did file one formal complaint about the original surgeon (Quilici) who denied our written request to allow us time to consult with our personal family physician before he performed some procedure. Bonnie accepted the standard protocol of chemo and radiation and followed all the doctors’ orders carefully – she became sicker and sicker, finally reaching a point where she truly preferred death from cancer to more of those treatments. She started this whole treatment process with the prediction that she had less than a 20% chance of survival for two years – so the preference for death from cancer did not seem a big decision in the face of medical prediction. She informed both the Oncologist and the Radiation doctor of this firm decision. She received 20 of the planned radiation treatments and almost all of the expected chemo treatments. She entered Hospice care to die. Bonnie was admitted into Hospice care on June 25, 2004. She was in terrible pain from the chemo and radiation, and got the terrible (and probably false) news from the surgeon about her last hope – surgery. She had already decided that she would rather die from cancer than receive more chemo or radiation, had a last hope for surgery but that was dashed by the surgeon. To her it was very logical and sane to prefer death from cancer to more of this type of pain and treatment. Yet, her oncologist denied her request for Hospice care, and could only suggest she accept more chemotherapy. When she refused, he got an approval (quickly!) for psychological counseling – apparently thinking she was not mentally competent to prefer death to his treatment. I was told, verbally, that a month after that denial of service he apparently filed a formal complaint about Bonnie preferring to obtain Hospice care to his chemo care. Under no circumstances would she ever subject herself to his care or that of anyone in his group. Whether it is a real concern or not, we have heard of this type of “psychology consuleling” leading to forced drugging on the basis of the patient’s “incompetence.” The very fact that such an alternative was recommended by Dr.Arzoo rules out either him or his group as doctors we would have anything further to do with. I did not disagree with her willingness to die from the cancer, seeing the agony she was going through from the chemo and radiation (it was clearly NOT the cancer causing these problems – since that had shrunk). The Primary Care Physician did approve her request, as did the Hospice Medical Doctor, and she was then admitted to Hospice – expecting to die in peace and out of pain because of the pain control drugs she understood could help. As the pain control drugs reduced the pain miraculously, the only source of discouragement and discomfort was her inability to swallow. We understood that “relief of the swallowing problem” would be considered palliative care and could be provided under the Hospice care. There was a denial of service here, with the denial being presented to us as a ‘better alternative’ – to be discharged from the Hospice, return to standard insurance, get the endoscopy (which seemed obviously the correct medical procedure) but only after a PET scan to assure the GI doctor that he would not be putting the Endoscopy tube down into a mass of live cancer cells. Any time I brought this subject up with a doctor I never got any disagreement that this would be the most correct medical procedure. As the days went on, the pain under control, Bonnie again felt that the swallowing problem could conceivably be permanent, and would not be an acceptable life style. While she was in the Hospice care we sought medical help in alleviating the swallowing problem. The care seemed clearly palliative since the last CAT scan had shown that there was “at least a 30% shrinkage of the cancer of the esophagus.” In other words there appeared to be no chance that a growing cancer was the cause of the blockage causing the swallowing problem. I did lots of research on the web and learned that scar tissue from the radiation could well be causing the swallowing problem – and that a PET scan could differentiate between scar tissue and cancer. The swelling caused by radiation would certainly have subsided by the now-five-weeks after the last radiation. Bonnie, now out of pain from pain control, began to have hope again – at least that she could be helped to swallow, and that a second opinion could replace the terrible prediction of the surgeon for a 5% chance of survival following the 11 hour surgery and 30 days in ICU. We tried to get a second opinion on the surgery, but that has still been denied up to this day. While Bonnie was still in the Hospice she had requested service for a GI and a second opinion from an “alternate provider” about one month earlier than the date of this letter. The insurance provider denies service “by paperwork,” attempting, always, to “look” like they are responding promptly. For instance, Exhibit A is a “Prior Authorization Form” which was completed by the Primary Care Physician on July 8, 2004 for GI treatment and second opinion at UCLA. The law provides: Generally, a second opinion must be authorized or provided upon request in an "expeditious" or speedy manner -- in certain circumstances, within 72 hours.20 Here is further quote from the law – not followed by the insurance companies in this case: If your health plan denies your request for a second opinion, it must notify you in writing of the reasons for the denial and inform you of the right to file a grievance with the plan.23 And another – The State will know whether the insurance companies followed this law: Plans are required to file their timelines for responding to requests for second opinions involving emergency needs, urgent care, and other requests with the Department of Managed Care. These timelines must be made available to the public upon request.21 When there was no response to that request, as we queried, the Primary Care Physician was told that the original had not been received by Lakeside. The nurse at the Primary Care Physician showed me their office log of FAXes, indicating that the request HAD been FAXed to Lakeside. On July 13, 2004 Bonnie was discharged from the Hospice – with the explanation that it would be easier to get further treatment of her swallowing problem within the regular insurance coverage. Even though the Primary Care Physician was certain that Lakeside had received the original request, he “re-submitted” this request on July 23, 2004, according to a note on the office copy of the original request. That is the same Exhibit A as referenced above. This same form, itself, originally claimed to not be received at Lakeside, was, nonetheless, returned to the PCP’s office with the “modified approval” on July 28, 2004, five days after “re-submission.” (See Exhibit B) The modified approval ignored the original request and simply substituted a “consult” with a gastrointestinal doctor. In light of Bonnie’s ongoing complaints about her swallowing problem, this referral could well have been OK if it had been provided on a timely basis. But, by this time the results of the Swallow Test (below) were known and this referral can only be seen as a denial of service. The “consult,” of course, gave rise to yet another denial of service. When we called for an appointment the next available was August 27, 2004, almost two months hence. Although the several hand-written remarks on these forms are hard for a layman to understand, the people who work with them know exactly who wrote what and can testify as to their significance. What is clear to a layman is that Lakeside claimed to not receive this request, FAXed on July 8th, but then sent the same form back to the PCP on July 28th. Lakeside may claim that they sent back a form dated July 8th, but, per them, only received on July 23rd. I assert that Lakeside, in this instance, and as a general pattern of denial of service, handles some number of requests by “pretending” that they were not received. If the originating office inquires, Lakeside will simply claim “non-receipt.” Then, when the same form is “re-submitted” Lakeside may well either “lose it again” or, this time, act on it. Even in this case their action was later than the required three days and changed the service to something very different than the original request – something that would further delay and deny service. When we were waiting for approval on service, Bonnie described her frustration to the PCP who ordered a Swallowing Test that was then done on July 16, 2004. This test established, by X-Ray, that there was still a mass that was apparently causing the blockage in the esophagus. We certainly knew this to be true, but the referral for this service gave the system more opportunity to deny the real service that was medically necessary – a PET Scan to show whether or not an Endoscopy was safe, and presuming it was safe, the Endoscopy that could include the balloon or stent that might have provided immediate palliative relief for the swallowing. Apparently on July 23, 2004, (Exhibit C) another request was sent to Lakeside by the PCP. This form is stamped as received, apparently by Lakeside, on July 23, 2004. Since there had been, by then, no insurance response to the original request of July 8, this new request requested the GI and second opinion at UCLA. That was “approved as modified” (Exhibits C and D) by the HMO to return to the very same Oncology office that had already given the first opinion. I was told, verbally, that this referral would be done by a more senior doctor in that office, but this is the office which allowed Dr. Arzoo to recommend psychiatric treatment for Bonnie and which (I learned verbally) had further complained, about 30 days later, that she preferred to die from cancer rather than have more chemo – as if this were reason for complaint about her. I was told, verbally, that this same Oncology office wanted to “review” the case and would have the authority to further refer Bonnie to a different doctor for a real second opinion, and would even have the authority to get approval for the PET scan. It seemed to me that this Oncology office was caught in denying service and allowing a false opinion on surgery to drive Bonnie into the Hospice and that they would be only looking to justify their earlier opinion that she needed more chemotherapy. The law says: If your health plan denies your request for a second opinion, it must notify you in writing of the reasons for the denial and inform you of the right to file a grievance with the plan.23 The insurance refused a second opinion at UCLA despite the fact that, in our personal experience, Lakeside referred us to an UCLA doctor. They did NOT inform us of their refusal to use UCLA again, and just substituted the same Oncology group that had already given us the first opinion – “more chemo.” This referral was sent to us, as approved, by letter (Exhibit D) from Secure Horizons, dated July 29th. It is referred to as a “consultation.” We have received virtually no service over a lengthy period – with all sorts of paperwork to make it appear that the insurance companies are being responsive. The law says: The independent review process is designed to get HMO treatment denials based on medical necessity (where HMOs say that you do not medically need a treatment) reviewed quickly and resolved informally with the goal of getting you care in as prompt a manner as possible. The independent review process is intended to be "independent" of the HMO and is administered through and supervised by the Department of Managed Health Care. If the independent review concludes that the health care service should be provided, the HMO is required to provide the service or reimburse you if the service was obtained out of plan and paid for by you.1 If there is not a very prompt approval of service we intend to seek care at UCLA on a private payment basis, and take whatever actions are further indicated to reach resolution on the continuous denial of service by Lakeside and/or Secure Horizons. I have brought all this to the attention, again, of the PCP, and am now writing this letter of complaint – hoping that we can finally get approval for what should be a very routine “second opinion” (which, logically, would have to be from someone different from the treatment team that led Bonnie to choose a Hospice rather than continue their treatment plan). It is obvious to me that the PET scan is being denied because it is expensive. It seems medically necessary to me, however, if the normal palliative handling of an endoscopy is to be done for the swallowing problem. Bonnie is recovering slowly from very terrible chemo and radiation treatments – and whether she is to live or die, insurance coverage should be available for the palliative care that seems medically correct. We have dozens of copies of medical reports and tests – I can provide whatever we have – the records should all exist within the medical and insurance system. Bonnie has signed, below, a release for medical records to the State. We ask for help in getting Bonnie the palliative care she needs on an urgent and immediate basis – starting with a second opinion consultation with the doctor at UCLA. If there is not reasonable response to this request, immediately, we will move forward with obtaining that second opinion by private payment, just as the official complain procedure calls for.
Sincerely, Karl Loren Sent To: Department of Managed Health Care Lakeside Medical Group Secure Horizons Irvin S. Benowitz, D.O. Appendix: If you are dissatisfied with any decision made by your health plan, medical group or doctor, you have the right to file a complaint, or "grievance," with your health plan and with California's regulator of managed care plans, the Department of Managed Health Care (DMHC). Both the health plan and the DMHC must follow particular standards and timelines when reviewing and resolving your grievance. When there is no other reasonable alternative, get needed treatment first, and then take the necessary steps to obtain the proper resolution to the problem you are having with your health plan.
Grand Success! You really should read the entire 13 page complaint letter -- very formal -- above -- to appreciate this final footnote. The insurance company agreed with me! That is utterly amazing -- since I expected a "stonewall" response. The above letter of complaint was sent to the HMO, Secure Horizons, and to the "medical group" within that HMO where we had our coverage -- "Lakeside." The complaint was also sent to the official State of California agency that is supposed to handle complaints about HMOs. In essence, the above complaint suggests that the HMO had denied service because the service was expensive -- that is illegal, but not unusual. The letter got their attention and on Friday, August 13, 2004, I received a call from the HMO that they were "reversing" the denial of service. This could be a major victory for mankind! I exaggerate, but there are millions of people covered by HMO insurance and the HMOs MUST find some way of limiting their expenses -- it may not be easy to do what I did, but you have the pattern now. It was also a major victory for Jean Ross. Just a couple days after the insurance coverage was approved, Jean had the CAT scan that showed NO TRACE OF CANCER. That was a report very well worth fighting for. Collect information as you move through the process -- you can see that I have collected literally hundreds of pages of research and medical tests -- and I have not been unwilling to disagree with the powerful insurance company, and also not unwilling to disagree with the doctors themselves. It takes courage and smarts -- I have blazed a path you can study and follow. Karl Loren August 13, 2004.
This web site is a breath of fresh air in a world of pollution.
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This web site is Copyright © 2004 by Karl Loren. Permission is granted to download, copy, distribute and use as long as the copyright notice remains attached to such use and the intended meaning is not altered.
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whether they admit it or not, all health insurance companies must find some way
of rationing care. The most obvious methods are simple "denial of service"
actions -- this letter explains how that applied in Bonnie's case.