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Making Decisions In A Time Of Great Distress

For mesothelioma patients, the crux of the crisis is how to buy more time. How can we as lawyers help, if at all? Medical, logistical, and philosophical questions abound: how bad is the tumor? What treatment options are there? Are they any good? How much do they cost? Is one form of surgery better than another? Is surgery even necessary? If my client gets radical treatments, can he still endure a grueling two-week deposition? Can he make it to trial? Can he still play golf, hike, bike, or putter with his grandkids? What's his quality of life going to be? How long has he got

Where does the patient or the lawyer look for answers when the data are confusing, when there are no clear answers, and when there is no standard of care? Where do you look for answers when the doctors may not even know?

Let's step into the breached hull of a mesothelioma patient and try to pick the best lifeboat. He's just been diagnosed. Water is pouring in. Now what?

Searching for a lifeboat on a sinking ship

If the ship is going down, your first instinct is to grab for the nearest lifeboat. If you had time to reflect, though, you might ask: how bad is the breach? How much water have we taken on? Can it be repaired? How fast? Are the bilge pumps working? And what about the lifeboat itself? Is it stocked with provisions? Is it seaworthy? As with the sinking ship, with asbestos cancer you need to assess or stage the damage at the same time that the damage is escalating out of control

Staging a tumor is complex stuff. Mesothelioma doesn't thrive as a solitary ball-type nodule. It's diffuse. It spreads, usually within the confines of the pleural space - if the patient is "lucky" - otherwise, by itself or during surgery (including needle biopsy) it can spread like wildfire. Oftentimes we won't truly know the proper stage until after radical surgery, when lymph nodes are dissected, as few doctors require mediastinoscopy before surgery, and PET scans, though helpful, are not reliably diagnostic of nodal invasion. There are at least five different types of meso, some more amenable to treatment than others, and there are at least six different tumor staging systems with no uniform use among doctors. It's like trying to get the same answer from six different people, none of whom speaks the other's language. Regardless of the staging system, common sense teaches that the earlier the stage, the higher the survival on average

Let's say we have an accurate fix on the size, type, and extent of the pleural cancer: an early stage epithelial tumor that hasn't invaded any surrounding organs or any lymph nodes, and the patient is a male in his early 60's. Let's assume further that the patient is aware of multiple options such as chemotherapy and radiation, but at the outset wants desperately to rid his chest of the beast. Viscerally, he wants it out, he wants an operation, and he wants to rage back against the disease. Destroy the invader. Crush it. Get it out

Our patient's threshold decision is whether to hook up to chemotherapy or jump right into radical surgery. He must make this decision while his ship is taking on prodigious quantities of water. Amidst the mayhem, he must get to and choose a lifeboat. Even if the waters were calm and he had the luxury of time, my nineteen years of watching how these decisions get made convince me that his decision would still involve a throw of the dice compared to other cancers.

The problem is a lack of reliable data. Surgeons at the forefront of mesothelioma treatment are few and busy, often with little incentive to publish the results of their work. Since mesothelioma is an uncommon cancer, research money is scarce. Everybody talks about the merits of randomized clinical trials, but few treatment centers have the funds to finance them, and fewer still have been willing to set aside ethical concerns and design and recruit for one.

Another theory is that some centers or doctors may worry that their "treatment program," if subjected to rigorous outside scrutiny, could be shown to be ineffective. Those who do publish are always at risk of criticism for "cherry picking" because the pool of patients is so small, the outcomes so often fatal, and because a patient - if he's lucky - may over a 3-4 year survival period seek different treatments from different hospitals. Very few surgeons or oncologists "quarterback" their patient from start to finish. If it's a daunting obstacle for doctors, it's even more daunting for lawyers who wish to engage.

A common approach is to look at the work of leading surgeons and pick the surgery that advertises the longest survival time. Unfortunately, surgical studies are typically retrospective rather than prospective and lack a non-surgically treated comparison group, so it's impossible to say whether surgery actually helped. The advent of chemotherapy, used alone and used in combination with surgery, opens other vistas…and new horizons of uncertainty.

Deciding which lifeboat to take isn't just hard for the patient, it's hard for the doctor as well. Treatment ranges from doing everything to doing nothing. If the doctors are divided, how can a lawyer possibly give sound advice? And if the doctor and lawyer are confounded, how can a patient ever hope to get through the maze?

An oncologist who spoke at the 2007 Mesothelioma Applied Research Foundation's annual symposium described pleurectomy / decortication as "quick and easy, but unwarranted." A client of mine in Iowa said that his treating physician described the PD as "completely useless." Others call PD "palliative only," or slightly better than doing nothing. No randomized, controlled clinical trial has ever been conducted on any surgical option for malignant mesothelioma, much less reached any of the above conclusions specific to PD.

Flores R, Zakowski M et. al., Prognostic factors in the treatment of malignant pleural mesothelioma at a large tertiary referral center, J Thorac Oncol., Oct 2007.

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