Monday, July 30, 2007

July 30, 2007 - Speak Up!

There was a fine article in yesterday’s New York Times: "Cancer Patients, Lost in a Maze of Uneven Care," by Denise Grady. It highlights the sad fact that, for all the technological wonders we have available to us in this country for treating cancer, the actual delivery of those treatments often leaves much to be desired.

Cancer is a complex disease. Almost always, successful treatment requires not just one doctor, but a team. It also requires patients to become well-informed about their condition, and to participate, along with their physicians, in making treatment decisions. It’s not that the patients know more about medicine than the doctors (we don’t). It’s that, in many cases, there is no clear-cut treatment protocol. Like the scarecrow in the Wizard of Oz – who, when Dorothy asked him which way to the Emerald City, replied by saying, “Some folks go this way, some folks go that way, but other folks go both ways” – sometimes doctors actually say to patients, “I have several different treatments I could recommend, all of which show some track record of success – which one would you prefer?” When we hear such a question from our oncologist, we’ve got to be able to supply an answer. That’s why it’s so important to educate ourselves about the disease.

For patients to be active participants in treatment decisions is sometimes more than a matter of personal preference. It can make the difference between life and death. The Times article tells the story of Karen Pasqualetto of Seattle, who – in her thirties – developed colon cancer. By the time it was diagnosed, her disease had progressed to stage 4, and had spread to her liver.

Karen’s first doctor said her liver cancer was inoperable. There was nothing he could do for her, other than palliative chemotherapy treatments. He told her she had six months to live. Not taking no for an answer, Karen found a new oncologist, who was willing to give her aggressive chemotherapy. It helped. But this doctor, too, considered her a poor risk for surgery. Still refusing to take no for an answer, Karen located a physician at Johns Hopkins Hospital in Baltimore who was an expert on risky liver surgeries. She went to him, and learned that – while he agreed she was not a good candidate for surgery – he thought she was good enough. (Karen had stacked the deck a bit, by – in a blatant bid for sympathy – holding her infant daughter on her lap as she spoke with the surgeon.) After a very involved operation, she was able to return home and live – at least for now – a relatively normal life. Her cancer will likely recur, but already she’s outlived the original life-expectancy predictions.

Karen’s original medical insurance company was only willing to pay for the palliative chemo. If her husband had not moved to a new job – as a mid-level executive with Starbucks – that offered better medical coverage, Karen’s surgery would not have been covered. In that scenario, unless she would have been able to tap friends and family to pay for her care, she would be dead today.

Karen’s care, the Times article says, cost over $400,000. Her original insurer refused to pay it. Because her husband moved to a new job, and because his employer’s medical insurance didn’t exclude Karen’s case as a pre-existing condition, she was able to survive.

Reflecting on the members of a cancer support group she attends, Karen said, “It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, ‘If the provider won’t pay, my family will. I don’t care, I’m going for a second opinion.’ ” But, she also knew that not every patient could make such a statement.

Is it worth $400,000 to give a young mother a few more months, even a few more years, to help raise her child? It’s an agonizing question. How can one even put a price cap on something like that? The sad truth is, insurance companies do it every day. It’s all part of the game. In countries with universal health care, it can still be problematic. In those places, it’s the government making the call, not private companies – although, in those systems, at least the playing field is more level, from one patient to another. It’s less of a maze (to use the Times writer’s metaphor).

For us patients, speaking up for ourselves is part of the game too. The proverb’s right: the squeaky wheel gets the oil. Sometimes, something else is also true: it’s the squeaky wheel that survives.


Vance Esler said...

This is exactly the kind of patient freedom that will be sacrificed in a government-run system which forces everyone into the same mold.

The treatment decisions will be based upon algorithms, and the only choice patients will have is to refuse a particular therapy.

The exception may be if patients enroll in a clinical trial.

This sort of thing is already occurring in the private world (I may blog about this later), but will be much more rigid once adopted by the government.

Carlos ("Carl") said...


As is presently true in the British system, patients with financial means could still arrange for private treatment at their own expense.

I suppose that what we have to decide, as a society, is whether the freedom of choice that's now available, on a limited basis (within ever-tightening insurance regulations), to the insured middle class, is of greater value than the access of everyone to reasonable medical treatment.

Vance Esler said...


But the difference between the U.S. system, as it is evolving, and that of socialized countries such as Britain and Canada, is that the government agencies here are less willing to allow patients to wander outside the government system.

As you know from the discussion on my blog, we have parallel systems here already. But the phrase that keeps getting floated out is "single-payer system." I take that to mean what it says...

It is in the realm of politics now, so who knows what will happen?

Iglesia Presbiteriana Príncipe de Paz said...

Dear Carl;
You are in my daily prayers. You are a real inspiration to all of us.
Julissa, CLP Principe de Paz

Julie Orvis Marcinkiewicz said...

I read with much interest on this topic of financing health care. I did a 2-year stint selling health insurance - the endemity type plan that gives people "choice." My sales rap was "You know I believe in universal health like that have a Canada" (90% of my potential clients would agree) "But you know the argument againt that is it's 'socialized medicine' and health care would be rationed. Well, what do you think the HMOs are doing? Rationing health care to the convienence of their company and their bottom line. (As vance says of the government type program "treatment decisions based upon algorithms") Our company will give you choice." So what is the difference between the for-profit health insurance industry (HMOs and other managed care product) do this and government? Would the government be more even playing field?

Well, the reality is, because health insurance endemity plans with choice are made affordable with high deductables or not covering all proceedures or the total cost of the proceedures, or only cover castastrophic and not "maintenance" and preventive care, it's left to the patient to do their own cost containment or foot the bill. In the end, the patient pays for it, either with high premiums or direct bills to the providers. (or both)

I ended up leaving the health insurance sales gig because I got a job in my old field of event planning, but I was really having hard motivating myself to sell such a product. I'm happy to be out of it.

When it comes to health care finance you have three factors:

1. Universal coverage
2. Total patient choice and quality care
3. Cost containment/affordability.

You can not have all three at the same time. Total choice and the expectation for "the best" and "the brightest" is expensive.

I think it is very telling that in statistics like infant mortality, the US is higher (worse) than other industrial nations with some national health care program.

My two cent on this. I am happy that you are getting good quality care, Carl, and think of you often, and read your blog regularly and find a lot of inspiration. Send my love to Claire.

Rob Pollock said...

Hi Carl,
Thanks for highlighting the NY Times story on Karen. It also raises the big question about when screening should start. 50 years is way to late for the many who are diagnosed stage 3 or 4 colorectal cancer in their 30's and 40's.
I was sorry to read of your relapse. I imagine you're still waiting for your PET/CT Scan and other results before you settle on a treatment plan. I hope things work out for you.
Peace and blessings... Rob
"A Cancer Journal"

Carlos ("Carl") said...

Thanks, Julissa and Julie - Julissa for the prayers, and Julie for your ruminations based on your experience selling insurance.

I had no idea you ever did that. I can see why you got out of it, as well - too much of an ethical gray area!


Carlos ("Carl") said...

Yes, Rob, the discussion over treatment plan is ongoing. I'm waiting on a second opinion from my doc at Memorial Sloan-Kettering.