Theodora Ross just made your life easier. In addition to giving you a fabulous resource to recommend to patients, her book A Cancer in the Family offers you invaluable insights about the challenges patients face when their cancer may be hereditary. Regarding the key tasks at hand (such as obtaining a family history), she provides practical advice bolstered with useful metaphors and mantras that you can steal and use with your patients without a shred of guilt.
From Ross' qualifications, you'd think she was destined to write this book. She has the expertise of a medical oncologist who researches susceptibility genes and the personal experience of a melanoma survivor and carrier of BRCA 1. Plus she's a gifted communicator. Her writing hits the sweet spot: authoritative and comforting without oversimplifying or sugarcoating and without sounding preachy or cheerleadery.
As do most clinicians with their patients, Ross keeps focusing on the overriding benefit: knowledge of mutations can save lives. That refrain, while effective, is only a start, especially if caring for patients who are reluctant to proceed with counseling or testing. An understanding of the obstacles patients face leads to insights about how you can help patients with just a few words.
Let's look at two tasks: obtaining a family history and disclosing a mutation to family members who also may be affected. In both cases, you're asking patients to convey double-whammy news: “I (may) have a genetic mutation that increases my risk of cancer. (Since I do,) you may have it, too.”
Emailing or phoning about heritable cancer is awkward if reaching out to relatives with whom patients have little contact. If reaching out after a period of silence due to discord or estrangement, patients can feel fraught with mixed feelings. In closely knit families, patients may dread injecting new fears and uncertainty into their loved ones' lives, and the conversations can be heart wrenching.
Patients also need your help because they often face roadblocks, if not landmines. Family lore and vague or inaccurate information can lead them astray. Family members may be hiding a cancer history out of embarrassment, shame or desire to protect loved ones. The conversations can become explosive if patients' queries threaten a secret about a family member's (or the patient's) true ethnic heritage or biological parents—such as an undisclosed adoption, religious conversion, extramarital affair or rape.
To help patients anticipate and minimize problems, Ross reviews a spectrum of common scenarios, complete with tips for handling them. She also introduces the genogram—a fascinating tool used in psychology to characterize emotional relationships. Simple to use, genograms help patients determine which family members to speak with first and how best to couch the message.
Rather than getting into any of that, you can fulfill your duty with encouraging words, such as:
- Genetics is a complicated and highly emotional topic.
- You can expect figuring out a family history to be difficult.
- Whatever family history you obtain will be useful.
- Genetic counselors can help you obtain the most complete family history with the least amount of stress for you and your family.
That final bullet deserves 28-point bold font. If you worry about burdening patients with one more appointment and medical bill, think of your prescription for genetic counseling as a way to ensure your patients obtain the most useful family history. Take comfort in knowing that counselors will guide and support your patients through the confusing and distressing emotions that otherwise might prevent them from taking action or responding to positive test results in healthy ways. For most patients, genetic counseling, like antiemetics, is not an extra.
If patients can't obtain the family history, Ross encourages them to delegate someone else to do it. If patients resist counseling or testing because their life feels too busy or stressful right now, Ross suggests pointing out that there will never be a good time to do it.
Denial & “Truthiness”
A little—or a lot—of denial may be playing a role in patient delays, too. Patients have been known to insist their family is mutation-free or their mutation won't cause problems. Ross provides a nuts-and-bolts discussion of how denial arises and ways to pierce it. Two go-to sentences you can put in your back pocket and pull out when needed are “A part of you knows that this is the right thing to do” and “If you take care of yourself, you will help your family.”
Ross devotes an entire section to an obstacle I'd never heard of before: truthiness. Apparently Stephen Colbert of The Colbert Report coined the term for “something that seems like truth—the truth we want to exist.” Truthiness is a problem of communication on both sides of the stethoscope. It can manifest itself in physicians through language that is vague, timid, overcautious, or ambiguous. For example, Ross was tripped up when told the cancers in her family were “not clearly hereditary.” For whatever reasons, she heard “clearly not hereditary” and proceeded with false confidence for the subsequent decade.
Ross suspects that physician truthiness may be more common with issues of genetic inheritance than other medical issues, partly because patients' exact level of genetic risk is usually unclear. She explains how compassionate physicians may not realize the dangers of hemming and hawing (“I think...possibly...”). Then she encourages patients to appreciate when physicians acknowledge the uncertainty and unknowns directly (“I don't know.”). An idea worth keeping in mind.
I was surprised by the lack of discussion about the implications of a mutation for patients who have children. And the later chapters delve into more scientific detail than I suspect most patients want or need. That said, the first chapters are worth the price of the book. Patients can easily skip over what doesn't interest them. I'd say the same for you.
A Cancer in the Family addresses an urgent need for a resource to help patients take control of their genetic inheritance. I encourage you to check out this book that can save lives.