Roost: Afraid of answers to difficult questions

By Amy Roost

In early 1994, as my mother was nearing the end stages of what would be a courageous 16-year battle with non-Hodgkins lymphoma, my 2-year-old Stuart was hospitalized with aspiration pneumonia, and my infant Spencer lay motionless with a 105-degree fever and ear infection, I discovered a lump on my left breast. To paraphrase Dickens: It was the worst of times. Period.

Amy Roost

In those days, I spent so much time in doctors’ offices that one day when my baby sitter couldn’t locate me she called my mother’s oncology office to see if I might be there.

I learned a great deal about how the medical profession and insurance companies work during this period of my life.

For starters, doctors don’t always disclose to their patients 100 percent of what they know, so it’s important to ask the right questions. Second, insurance companies always deny your first appeal and often your second and third and so on, in a war of attrition they like to play — and usually win. Third, when you’re frightened your brain gets full and your hearing goes bad. Fourth, it’s important to accept help from others and delegate when possible. And fifth, during chaotic times, triage may be only way to manage life.

Eventually, I spent less time in hospitals and exam rooms. However, Stuart’s chronic health issues continued. I learned about pulmonary and gastrointestinal functions, asthma, allergies and anaphylaxis, and melanoma. Eventually, I even had to learn about neurobiology when he was diagnosed and treated for a rare brain disorder.

Correction. I didn’t have to burn the midnight oil learning the details of his conditions; I chose to. Because of the lessons I’d learned earlier on, I turned into an impassioned health advocate for my son. I pressed for answers to questions doctors couldn’t readily answer; sought out second opinions; researched alternative and complementary treatments, and even at times second guessed a doctor’s methodology. I knew so much about Stuart’s conditions and the treatment options that medical staff assumed I was a medical professional myself.

Ironically, I now sit idly on the sidelines as my dad and stepmother face multiple health challenges. They are of a generation that wouldn’t think of questioning a doctor’s opinion, and do just as they are told. I’ve offered to accompany them to appointments serving as an extra set of ears. However, despite having close relationship with both of them, they’ve politely declined. I’ve offered to research their ailments and write out questions for them to ask the doctor. They’ve refused these offers as well. I’ve come to the conclusion that what is stopping them is not simply propriety, but fear. They are afraid of the answers they might get if they ask the difficult questions.

And so they suffer the effects of harmful drug interactions; they go from one specialist appointment to the next without an integrative care plan; and they throw their hands up in surrender when they receive an explanation of benefits they can’t make sense of.

In some ways their willful suspension of disbelief is a quaint reminder of a bygone era when our trusted our doctors could do no wrong. But what they and many others don’t realize is that no matter how terrific the medical team might be, even the most dedicated doctors, nurses and social workers can’t be at a patient’s side all the time, and they are constrained by the demands on their time and the barriers within their systems.

Granted it takes time to research your options, find the best doctors and hospitals, track down clinical trials, resolve billing errors and talk to insurance companies, let alone showing up to your medical appointments. And it’s stressful. But knowing your choices is almost always worth the time and the stress. If you can’t see yourself poking holes in your doctor’s treatment plan or informing her of your decision to seek out a second opinion, then find a family member or, if you can afford one, hire a professional health advocate who can help. And if necessary, remind yourself that it’s no measure of good health to be well adjusted to a profoundly complex and often chaotic health-care system.

Roost works in the book publishing industry. Reader comments are encouraged.

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1. Roost: Proposition 35 falls short
2. Letter from the editor: No, we are not biased

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Posted by Staff on Oct 17 2012. Filed under Columnists. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry