Willful Ignorance – When Not Asking the Right Questions Can Kill You

Written by Jill Chapin. Posted in Healthcare, Opinion

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Published on October 01, 2014 with No Comments

When confronted with a breast cancer diagnosis, it is important to ask your doctor about treatment efficacies as well as to understand whether your doctor's treatment recommendation is motivated by profit.  Photo via Wikipedia.

When confronted with a breast cancer diagnosis, it is important to ask your doctor about treatment efficacy, as well as to understand whether your doctor’s treatment recommendation is motivated by profit. Photo via Wikipedia.

By Jill Chapin

October 1, 2014

“You have breast cancer.”

If we haven’t personally sat across from a doctor hearing this life-threatening diagnosis, we know someone who has. And although it’s understandable how one’s brain can freeze up and block out everything that follows this stunning news, at some point the patients or their advocate need to speak up and get the information that they most likely will never get unless they ask for it.

In my experience, when patients are told what the standard of care is, doctors seldom appreciate being questioned in depth about their proposed treatment plan. If you sense this, you could lose your confidence to ask what you want to know, concerned that you may be wasting his time or fearful of sounding ill-informed. Or you may be so overwhelmed that you have no idea what a useful question might be. But it would be in our best interests if someone musters up the nerve to ask tough questions. Even if your doctor gets upset with you for being so inquisitive, we must never lose sight of the fact that doctors are essentially our employees; we can hire them or decline their services and interview someone else.

Over the past fifteen years, my mother, sister and daughter were diagnosed with breast cancer with no genetic predisposition or family history. My mother, diagnosed at a robust 83 with Stage One, was given radiation and Tamoxofin for five years. After two years, she lost all her energy, but my sister and I intervened, explaining this to her doctor who reluctantly took her off Tamoxofin. Because we spoke up, our mom’s vitality returned. She died ten years later but not from breast cancer.

My sister was diagnosed with Stage O. She agreed to everything her doctor told her to do with lemming-like acquiescence, never questioning what Stage 0 meant, and was comforted by him telling her there was a 98% chance of non-recurrence if she basically did what she was told. She did and she died.

My daughter was diagnosed with Stage 2B. She and her husband questioned and pestered and researched and got opinions from many different doctors. A nationally acclaimed oncologist flat out told her that if she didn’t do chemo, she would die. Despite the overwhelming fear that enveloped her in the beginning, she gained the strength to forge a different path. She lived.

The most common – and least useful – question concerning your survival is whether or not your insurance will cover your treatment. Although cost is undeniably crucial, we need to understand that the answer will only affect one’s bank account; it will in no way affect one’s health. Think twice about using one treatment over another because of finances. Is the least – or most – expensive recommendation also the best choice for your particular cancer?

Here are some difficult questions that require a lot of courage to ask because some doctors can be intimidating, especially if they feel their directives are being met with skepticism. Ask anyway. Not asking is risking the possibility of not discovering other more effective life-saving options.

Ask what stage your cancer is. If your doctor doesn’t tell you, ask. Breast cancer is staged from 0 to 4. Stage 0 is considered by many doctors to be similar to a precancer, inasmuch as it is non-invasive, completely contained, and more women die with it rather than from it. If the advised protocol for your Stage 0 cancer seems overly aggressive to you, ask why. If his answer is that it is extra insurance against recurrence, ask about how the side effects of the treatment could weaken your immune system, thus canceling out that extra insurance.

Why this protocol over others. If you have heard of other treatments, don’t be shy about discussing them. Ask your doctor to explain why he didn’t recommend them. Even if your doctor truly believes that an alternative treatment would be better for you, he would be reluctant to admit it if it isn’t an AMA approved protocol without risking his license. Be sure to ask about this conflict. Could he be torn between whether or not he should reveal his opinion that the standard of care is flawed, or should he protect himself from liability and stick to AMA guidelines? Also ask what the survival rates are for his course of treatment compared to the one you are asking about. If he says there is no data on your suggested protocol, then ask him how he can be so certain that his way is more effective.

If you are to have chemotherapy, ask if the pharmaceutical company for this drug offers doctors financial compensation for prescribing them. This is a very sensitive subject and it’s difficult to wrap our minds around the possibility that our doctor may be profiting from our disease. Do you want even the appearance of your getting a drug that may better benefit your doctor than it does you? Dr. Peter Eisenberg, oncologist and Medical Director at California Cancer Care in Northern California, states “the financial inducements that lead many oncologists to decide which drugs to use – and how frequently to administer them – is based, not on what is best for the patient, but on what will maximize the physician’s reimbursements.”

Here is a scenario of how your doctor might profit from your chemotherapy: Your doctor buys the chemo for, say, $5,000 from a drug company. He sells it to you for $12,000, for which your insurance company is billed. They pay $9,000 to your doctor who, after subtracting the $5,000 he paid to the pharmaceutical company, nets a profit – from your treatment – of $4,000. Although this is difficult enough to absorb, it is also possible that your doctor may choose a different drug if his profit margin is higher from a different pharmaceutical company.

What is the cure rate for the recommended line of treatment, both in general and with his patients in particular? How long do patients survive? When they assure you that life expectancy will be extended, ask how much longer. If you read deep into a new cancer drug discovery article, buried near the end is the life extension results, and it rarely exceeds weeks or months. Your decision could hinge on answers to these questions.

Ask for clarification of the above numbers and survival rates. Don’t fall for funny numbers. Phrasing your odds can drastically alter your decision on what you ultimately decide to do. For instance, if you were told that if you do nothing after removal of your tumor, there would be a 70% likelihood that you will never get cancer again, but your odds of non-recurrence would increase to 80% with treatment, would you opt for chemotherapy?

But what if another doctor told you that there is only a 10% chance that you need chemotherapy, would your decision change?

Actually, both doctors are giving you the same odds. And you can see for yourself if you draw ten circles in a row. Cross out seven of those circles in red representing your 70% chance of non-recurrence by doing nothing. Then cross out one circle in green, representing your 10% improvement to an 80% chance of non-recurrence if you have chemo. Cross out those last two circles in blue; they represent the 20% chance that you will likely get a recurrence but chemo won’t help. Now add up the seven red circles and the two blue circles. Those represent the 90% chance that you either do not need chemo, or you do need something but it won’t work. What is left is that one green circle, representing the ten percent chance that you do need chemo and that it will work.

Ask about outside-the-box treatment options. Don’t allow yourself to be summarily dismissed as woefully naïve to think that any treatment other than the AMA standard of care is worth discussing. Their success rate is nothing to brag about. When statistics are cited about declining cancer mortality rates, keep in mind that patients often succumb to the side effects of the cancer treatment; death by heart disease or other organ failure caused by radiation and chemotherapy are rarely attributed to cancer on the death certificate. And when doctors brag about longer survival rates, it is not necessarily due to better treatment so much as the earlier time of discovery, making it appear that people are living longer.

It is profoundly difficult for us to be making our own life or death decisions but we need to resist the urge to be swept away with whatever we are told. It’s in our very best interests in becoming as informed as we can. Not having a medical degree in no way precludes our ability to participate fully and honestly with our doctors about the road map for the rest of our lives.

For more information on how my daughter was treated successfully for breast cancer without chemotherapy, visit www.youdidwhatbook.com.

Jill Chapin

Jill Chapin

Jill Chapin has been a guest writer and columnist in several Los Angeles area papers for over fifteen years. She has written a bilingual parenting book titled, “If You Have Kids, Then Be a Parent!” and a children’s book entitled, “My Magic Bubble.”

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