Who decides?

Every day in the U.S. about ten new patients are diagnosed with mesothelioma. Those numbers will continue to increase for the next decade. The choices they make about their treatment will determine the length and quality of their life. Surviving this rare, poorly understood, aggressive asbestos cancer depends on information and speed.

Clinical doctors play the most critical role in guiding meso patients on their treatment path. Although local or family doctors may see few mesothelioma patients, they are in a unique position to help. That help is straightforward: having knowledge about the availability of options; knowing that there are a handful of expert surgical oncologists nationwide; referring the patient to a mesothelioma specialist (which usually requires travel); and helping ensure that, in the case of an HMO, the patient can get the best available care “out of plan.”

Since economic factors can influence an HMO’s willingness to accept a request for out of plan services, treating physicians can help lay the groundwork for getting the patient care with a mesothelioma specialist.

Out of Plan Services

Even within the same HMO, requests for out of plan services with regard to mesothelioma can be treated differently, and it is hard to know exactly how the decision will be reached. The treating physician can influence that decision by focusing on the medical issues and on the patient’s quality of life. Cutting edge mesothelioma treatment options focus on maintaining and extending life, and these treatments are available at only a handful of institutions, such as the UCLA Geffen School of Medicine.

The Key Questions

When an HMO turns down a request for out of plan services, the patient can appeal. Federal regulations require an HMO to pay for non-plan services if the services are medically necessary and not available by an in-plan provider.

What is “medically necessary,” and who decides? These are the ultimate questions. Even among mesothelioma specialists, there is great debate over the best course of treatment: Chemotherapy alone? Chemotherapy before surgery? After? During? Which chemotherapeutic drugs? What about targeted biological therapies? Clinical trials? What type of surgery—pleurectomy with decortication, talc pleurodesis, or extrapleural pneumonectomy? Radiation? And on it goes.

Choosing between these and many other options is made harder because for mesothelioma there is no standard of care. One byproduct of the illness’s neglect by federal research funding has been that standardized treatments and procedures remain undeveloped because of the relative scarcity of a statistical database, clinical trials, and peer-reviewed journal articles on mesothelioma.

Another crucial issue complicates the matter. The architecture of every mesothelioma tumor is unique. It’s never a cookie-cutter operation, never a rote matter of switching out spark plugs. The skill of surgeons performing a pleurectomy has much to do with the number of times they have done the operation. A pleurectomy poorly done is worse than no pleurectomy at all.

Amidst this thorny thicket of treatment issues, who decides? The insurance clerk assigned to the file? A doctor or panel of doctors appointed by the HMO? How about the patient? Does the patient have a role in deciding the best course? Should the patient have a voice in matters of her own life and death?

Rubber—Please Meet Road

We represent a woman we’ll call Jane who recently was diagnosed with mesothelioma. For her, the questions of medical necessity and of who decides were not academic. They were questions that determined how, and how long, she would live.

Her local doctor believed that the decision was his, and denied Jane’s request for out of plan treatment. The insurance company thought the decision was theirs. Though the HMO had approved a 49 year-old patient’s request for the same out of plan mesothelioma treatment, when Jane requested life-extending services at UCLA, the insurer declined. The implications were that she had “lived long enough” and that Jane’s treatment was not medically necessary.

Jane believed that the decision was hers. Seventy-eight years old, extremely active, and continuing to work full time even after her diagnosis, Jane knew that she had a lot to live for, that she had a lot of life left in her, and that the out of plan services were medically necessary if she wanted to live.

Our law firm committed itself early on to helping Jane get the treatment she needed, and helping her run the bureaucratic and legal gauntlet at the HMO.

Jane’s Decision

Jane’s experience with mesothelioma mirrored that of many patients with this disease: after diagnosis she turned to the Internet and began learning. She concluded, after careful reading and analysis, that her best chances lay with an innovative surgery called pleurectomy with decortication. Unlike surgeries that amputate the lung, the pleurectomy strips away only the cancerous lung lining and the tumor. The actual lung is spared in a meticulous operation that leaves patients two healthy lungs with which to battle the illness.

Jane also learned that the surgery is intricate, can take eleven hours, and is done by only a handful of surgeons. The world’s pre-eminent practitioner, she learned, is Dr. Robert Cameron, chief of thoracic surgery at UCLA Medical Center. Dr. Cameron has performed the procedure on hundreds of mesothelioma patients, and the survival rates for his patients are two to three times the median survival of 12-18 months. Jane’s decision-making process was simple: pleurectomy with decortication performed by Dr. Cameron meant more life and a higher quality of life compared to other available treatments.

We submitted a report from Dr. Cameron in which he described the unique aspects of the pleurectomy with decortication surgical procedure, and he noted that in order to effectively perform the surgery experience was critical: a minimum of fifty operations. Without questioning the qualifications or the ability of the HMO’s medical team, Dr. Cameron did question the extent to which the insurer’s doctors had even general experience with mesothelioma. Jane’s doctors had taken almost two years to correctly diagnose her mesothelioma. More importantly, had any of the insurer’s doctors ever performed a pleurectomy? If so, how many?

The HMO’s Decision

These factual questions should have set the parameters for examining whether or not the HMO could provide the services. But that examination never happened. The insurer simply decided that the procedure could be performed in-plan. Had its surgeons ever done a pleurectomy? No one knew.

To Jane, the decision was senseless. The insurer had no financial motive to deny her request, since a pleurectomy costs no more than a complete removal of the lung. The insurer never disputed the medical necessity, and never demonstrated availability in-plan other than to say “we too have thoracic surgeons.” The key question of whether those surgeons had ever performed a pleurectomy was pushed to the side.

We appealed the decision, which was reviewed within the HMO. Now the decision fell upon yet another party, a staff reviewer. The reviewer chose a simple and clear standard: if the HMO surgeon performed this operation, then he should be offered the opportunity. If he did not feel qualified, then Dr. Cameron should be used and the health plan should pay. In order to plug facts into the standard and make a decision, the reviewer asked the insurer to answer three questions:

1. How many pleurectomy and decortication procedures had their surgeon performed?
2. How many of these procedures were for the treatment of malignant pleural mesothelioma?
3. Was the surgeon considered an expert in the treatment of mesothelioma?

The HMO refused to answer the questions. It simply asserted that experience with the procedure was unnecessary, and that identical care was available through the HMO. The insurer clearly felt the decision was theirs, not the reviewer’s. Yet their response voided the entire rationale of having an appeal, because the issue of experience was precisely the question on which the decision to approve out of care treatment would turn. Dr. Cameron gave compelling evidence that for this operation, experience was key. The reviewer agreed, and asked the insurer to demonstrate its experience. The insurer evaded the medical matter and simply asserted that experience was not required under the terms of the insurance policy—in effect, no answer at all. As a follow-up, the insurer forwarded the reviewer a note from a doctor opining that any board certified thoracic surgeon could perform a pleurectomy well. Absent explanation or analysis, this was like saying any certified airplane mechanic could repair an F-11.

The reviewer got the message: his employer didn’t want this one done out of plan, period. Despite the failure of the HMO to respond to his questions, the reviewer upheld the insurer.

The Judge’s Decision

Jane armed herself with the documents that showed how the insurer had avoided the reviewer’s questions and indirectly pressured a decision. Then we appeared before a judge and submitted Dr. Cameron’s testimony under oath. The testimony described the unique challenges and difficulties presented by a pleurectomy, and detailed his extensive experience with the procedure.

This testimony showed that, much as the medical reviewer had originally concluded, the background and experience of the physician is a crucial factor in deciding whether the services are available through the HMO. It was not enough to simply say, “Oh yeah, we do that.”

The judge disagreed. He considered the testimony irrelevant because it related to a different patient—even though the procedure and the illness were the same. The judge then said that Jane had failed to prove a negative: she had not established that the HMO surgeon did not have experience performing the pleurectomy. Rather than requiring the insurer to prove that its surgeon was experienced, the judge shifted the burden onto the ill and waning patient to prove that the doctor was not. Lacking power to subpoena or otherwise access records about the surgeon, Jane had been given an impossible hill to climb.

More than two months passed and the judge still had not ruled on Jane’s case, despite repeated pleas for a speedy answer.

The Tumor’s Decision?

As every mesothelioma patient learns, speed means everything. By the time the cancer is properly diagnosed, most patients’ symptoms have significantly progressed. A month talking with Doctor A, two months arguing with Insurer B, a couple of months waiting for Judge C to make a ruling…these delays quite literally put the decision in the hands of the tumor. This decision-making gauntlet is run by thousands of patients every year. As people wrangle over authority to decide, the tumor grows, strengthens, and crushes the life out of its victim.

Jane refused to idly stand by while paper was pushed from one desk to the next. She knew that whatever the insurer did, she would ultimately decide. It was her life.

After consulting with Dr. Cameron, Jane underwent the surgery and returned to work following the procedure. She scoffs at the idea that, because she is now 79 years old, she is less deserving of the additional life she hopes to receive from the surgery. She scoffs at the idea that the decision is anyone’s but hers. And she scoffs at those who suggest she should not do everything in her power to overcome her disease.

The Big Picture

Caring for mesothelioma patients means more than identifying the best treatment. It also means aggressively pursuing those treatments in the face of significant opposition, legal and bureaucratic. In Jane’s case, it was a choice of good versus bad, with no shade of gray. Dr. Cameron was clearly the best choice.

For other patients the options can be much less clear, especially when the out of care service is far from their home, when it is much more expensive than the HMO service, or when the choice of therapies involves various novel treatments, none of which has a statistical track record.

The alliance of patient, advocate, and physician—with input from the insurer, and the final decision resting with the patient—is the best model of all.


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