I apologize for my absence these past few weeks. I've been on a deadline to complete a patent application (for a software system that interoperates with EHRs and CPOEs to manage the delivery of plans of care and the resources required to carry out physician orders, as well as evaluating process and clinical outcomes for continuous quality improvement).

I'm going to return to the topic of Beliefs and Health in a few weeks.

For now, I'm making a detour to focus on the dilemma modern consumers confront in this era of "personal responsibility." During this next series of posts, I'm going to present and then discuss three stories about the difficult position patients and other consumers face thanks to today's consumer-directed healthcare strategy.

Let's start with a story about Jane's exasperating treatment decision.

• One has to make difficult treatment decisions when there are no clear-cut answers.
• Another has to decide on a health insurance policy from among dozens of confusing alternatives.
• And the third is being treated in a trauma center after a catastrophic event.

Let's start with a story about Jane's exasperating treatment decision.

After seeing countless specialists and six rounds of chemotherapy, Jane's ovarian cancer metastasized to her liver. This means she now has too many tumors for surgery. One doctor advised her to "Go home and think about the quality, not the quantity, of your days."

At 39 and the mother of two toddlers, Jane wasn't ready to give up; instead, she faced an excruciating decision. Three oncologists advised that she continue receiving chemotherapy, which showed some sign of working the last time. But two others thought she should first try cryosurgery, which starts by injecting liquid nitrogen into the tumors to shrink as many as possible. They then follow up with chemotherapy in hopes it would be more effective. The problem is, Jane might not survive the cryosurgery procedure.

When she asked a surgeon how to decide, he said that no one knows what she should do. He told her that she would have to make the decision based on here "own values" ... whatever that means!?!

Exasperated, Jane shouted, "I'm not a doctor! How am I supposed to know!?!"

Jane isn't alone. Many patients and other healthcare consumers face making daunting choices without adequate knowledge and guidance. Examples include prostate cancer, which gives patients the choice between watchful waiting and aggressive therapies like radiation or surgery. Breast cancer patients often hear conflicting advice from experts suggesting lumpectomy and others mastectomy. Heart disease patients may be told they need bypass surgery by one doctor, angioplasty by another, and a third says that drugs are all that's needed. And even for conditions that are not life-threatening-such as gout, back pain, mental illness, autism, chronic fatigue, menopause, dental procedures, and many others-there is little agreement as to the best treatment regimen.[1]

This is the bind more and more healthcare consumers are finding themselves in. Modern consumers now face a new world of "personal responsibility" and perplexing choices in a struggling healthcare system plagued with safety, quality and efficiency problems. Most are lost and confused when it comes to making important health decisions and taking responsible actions. It can be a lonely, frightening and overwhelming experience considering all the treatment options and medical uncertainty. It's like wandering around lost in a foreign land.

How is a consumer to know what's best?

Becoming more knowledgeable is important, but it can quickly become overwhelming; information overload is a real threat. For example, search the Internet for information on most types of cancer and you'll likely receive at least a million results. Not only is it impossible for a consumer read all this information or to understand it, but there are often conflicting recommendations and uncertainties. In fact, a Times/CBS poll reported that over half the time patients are given multiple treatment options with no clear best choice. Not to mention how difficult it is to figure which web sites offer accurate and unbiased information, and which are influenced by the self-interests of their advertisers and sponsors.

What about asking your doctor?

Sadly, few medical professionals have the time to sit with you and clearly explain all the data. Even if they did, it's unlikely that they'd have the breadth of knowledge to help you understand all the possible alternatives, including complementary and alternative approaches (such as dietary supplements, mind-body medicine, Chinese techniques, homeopathic and naturopathic medicine, bodily manipulation, energy medicines, etc.).

To make matters worse, an estimated half of all surgical operations and other medical procedures lack strict scientific evidence of their effectiveness and safety. In other words, healthcare providers often don't know what treatments work best for a particular patient. Despite all our medical advances, our country is way behind when it comes to tracking treatment efficacy and the outcome of prolonged medication use.

This means that consumers must now struggle to make treatment decisions that are beyond the knowledge of the experts!

Next time I'll tell the story of John's health insurance ordeal.

Steve Beller, PhD

http://wellness.wikispaces.com

[1] Based on a New York Times article titled "Awash in Information, Patients Face a Lonely, Uncertain Road" Aug. 14, 2005. Available at http://law.wisc.edu/patientadvocacy/PDFlinks/NYTimes.pdf