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As a Cancer Patient, What Do You Want?

By Heather Millar

Patient Talking to Doctor

As I was scrolling through a cancer patient newsgroup this week, I came across a cry for help from a fellow breast cancer patient. She was facing a major medical crossroads: Should she do radiation therapy, or not? If she did it, then when should she start, before or after surgery? Apparently, the doctors told her that there were good scientific arguments for any of these choices: radiation or no radiation; before or after. What should she do? Why couldn’t the doctors just tell her which path was best?

Here’s the good news: Better imaging and diagnostics have made it possible for doctors to be ever more precise about cancer. And, for many cancers, there are more treatment options than ever before.

All these advances are great, but they mean that the path through Cancerland is seldom clear these days. Every week, I come across patients complaining that doctors won’t give them a straight answer. When you’re scared and sick, it’s natural to want the doctor to be an authority who will just tell us what to do and make it all better. Unfortunately, the current state of medicine asks both patients and doctors to do more than that: Not only do doctors need to be clear about our medical options, but patients need to be clear about our own needs and preferences.

I’ve written before, here and here about how important it is for patients to seek out help when they face medical decisions.

Doctors aren’t generally taught how to collaborate with patients. Theirs is a data-driven, hierarchical profession. But a new analysis in the British Medical Journal calls upon doctors to challenge their assumptions. Not asking patients about their priorities can result in what the authors call a “silent misdiagnosis,” a misdiagnosis of the patient’s preferences.

They give this example: Two women have breast cancer. Linda is 58 and healthy. Susan is 78 and has heart failure. Both women have breast surgery. It turns out that Linda’s biopsy sample was mishandled, and she didn’t have cancer after all. That’s the sort of misdiagnosis most of us recognize.

But consider Susan: She’s already sick, but she goes ahead with the mastectomy. While Susan’s cancer is confirmed, she struggles with anxiety and sadness after her operation. Then she talks to a friend in a similar situation who opted not to have surgery. The friend says she’s not at all sure that she’ll die of cancer before something else catches up with her, so opts not to have surgery and to take hormones to slow the cancer’s growth. Susan feels intense regret when she hears of her friend’s decision. That’s what the BMJ authors call a “preference misdiagnosis.”

Doctors have been exhorted to listen to their patients for forever. And I’m sure most of them try to do so. But it’s natural for a doctor’s personal preferences to color his or her assumptions about what patients want. What would the doctor want for his own family member? What would the doctor want for herself, given her medical background and specialty? What are the preferred treatments of the hospital or clinic where the doctor practices?

However well-meaning, the doctor’s answers to those questions may not the same as their patients’ wishes.

For instance, one paper shows that while 71 percent of doctors think that breast cancer patients rate keeping their breast as a top priority, only 7 percent of patients report this.

And, many studies have shown that when patients are better informed about options and side effects of treatment, they make different decisions. According to research published in Medical Care, men informed of the risk of sexual dysfunction after surgery for benign prostate disease opted for surgery 40 percent less frequently than men who were not as well informed.

The BMJ authors lay out a flow chart showing  how doctors might make preference diagnoses with their patients:

• First, doctors should adopt a mindset of scientific detachment, the authors say. A doctor may not agree with patients’ decisions, but the patient has the right to make those decisions.

• Outline a preliminary preference based on data.

• Explain why the decision should be discussed by the whole “treatment team,” doctors, patient, family, caregivers.

• Explain the options, and the risks, benefits and side effects of each option.

• As a team, try to identify preliminary preferences; then narrow these down to informed preferences.

• As a team, make a decision.

If your doctor doesn’t help guide through a similar process, suggest that he or she check out the British Medical Journal paper. Sure, it’s more difficult for patients to be active participants in their medical decisions. But it’s better than deciding in haste, and then repenting at leisure. What do you think?

Photo: Polka Dot

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