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Three Suggestions for Helping Patients Live With Advanced Disease

Harpham, Wendy S. MD, FACP

doi: 10.1097/01.COT.0000524571.66900.92
Opinion

When I tell newly-diagnosed patients, “You are not your cancer,” I'm trying to encourage them not to let cancer define their life. That's asking a lot of patients whose life feels hijacked by advanced disease. What can clinicians do to help such patients live as fully as possible between tests and treatments and doctor visits, namely, during their in-between days? Let me share three suggestions garnered from my phone interview with Teva (pronounced Tay-va) Harrison about her award-winning memoir, In-Between Days.

Teva was a 37-year-old happily married director of marketing when she tumbled from the top of her world, clutching her hopes and dreams. Diagnosed with stage IV breast cancer, she landed on the rocky terrain of palliative chemotherapy, her nicely planned future smashed to smithereens. The activities that defined her days were over, from her career to her running half-marathons. As for her expectation of having children and growing old with her beloved David....

Overwhelmed by her new reality and wanting to keep her diagnosis private, Teva spent the in-between days holed up at home alone with nothing but her thoughts. When not zonked on pain meds, she argued with herself about what to do, mercilessly berating herself for wallowing. She told me matter-of-factly, “I lost a few months to depression.”

Stuck and not wanting to squander her now-precious time, Teva sought professional help. As she saw it, “I was lucky to have hooked up so quickly with a psychiatrist specializing in psychosocial oncology.” Lucky? Quickly? My heart ached, knowing if she were bleeding or vomiting, no professional would have let that go untended for months.

Suggestion #1: For patients newly-diagnosed with advanced disease, prescribe counseling as a routine part of care. We're prescribing a session of counseling. It may help you adjust more quickly, which then helps you manage treatment and the changes in your life. After the first session, you can stop at any time.

As clinicians, you're handicapped when it comes to diagnosing the early signs of depression. You don't see patients' in-between days, and medical issues consume your time and attention when you're with them. Their risk of depression justifies routinely prescribing counseling, just as you routinely prescribe anti-emetics along with emetogenic therapies.

Why a prescription? Some patients need its gravitas to overcome objections of family members or their own concerns about being—or appearing to be—weak or crazy. Granted, not all patients with advanced disease need counseling. Some who need it refuse it, and that's their choice. Better to risk unfilled prescriptions than unfulfilling days. For patients who need a push from you, a prescription may avoid the tragedy of treatable depression poisoning their in-between days.

Like most cancer patients new to counseling, Teva expected to talk about cancer. I wasn't the least bit surprised when she told me she spent her first sessions working through issues about her childhood and the coping mechanisms she'd developed, “not all of which I'd call healthy.” Teva discovered what many patients in treatment learn the hard way: Cancer changes the equation for how best to handle roles, routines, and relationships.

Survivorship is demanding, leaving less energy for managing non-cancer life. Short-term counseling to address unhelpful, exhausting thoughts and feelings—emotional “garbage”—offers long-term rewards. Life is better after getting rid of one's garbage, whether toting only a grocery-bagful or dragging enough to fill a commercial dumpster.

Suggestion #2: Encourage patients to pay attention to all stresses, and not just cancer-related ones. You need your energy for dealing with treatment, even if everything's going well. You build resilience by addressing all the stresses in your life, and not just cancer-related ones.

For one of Teva's counseling sessions, on a whim she brought a comic she'd recently made of an incident from her childhood, explaining, “It elicits the same emotions that are worst about having cancer.” The comic gave her psychiatrist insight and gave Teva a safe way to open up.

Over the subsequent months, as Teva's depression lifted, her desire for privacy yielded to a yearning for fellowship. She told me how at a cancer retreat, “listening to other patients having the same thoughts and feelings...something broke.” Back home, her ink flowed. Comic after comic shined light on her life with cancer, transforming unsettling vague ideas into black and white. Thereafter, with comics in hand, she could talk about “the hard stuff,” a key step to adjusting and moving on.

Teva's story from that point on makes my head spin. Girlfriends told Teva her comics could help people. She then talked with a guy at a comic book store who suggested posting her work online. A major magazine saw her blog and serialized it. An editor saw those articles and made a book offer. The book was published in record time to critical acclaim, while Teva's inbox filled with invitations to speak and write.

My point is not that she achieved extraordinary success. It's that she found healing in the ordinary acts of talking about and giving meaning to her loss and pain. Today, her terror and sense of urgency are less. Uncertainty no longer keeps her from making plans. Ever since grieving her losses, she's seen opportunities for joy.

Suggestion #3: Inquire about the ways patients are finding meaning and moments of joy. Tell me what you're doing besides treatments. Which activities matter to you...or bring you some pleasure?

As a physician-survivor, I've long believed that triumph over cancer is measured by how patients live, not how long. In the care of patients with advanced disease, you help them triumph over cancer by providing good medical care while helping them live as fully as possible during the in-between days.

Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
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