Preparing Patients and Caregivers for Long-Term After Care

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A long-term diagnosis such as cancer can affect nearly every aspect of someone’s life, including his or her family, work, and daily routines. When delivering a potentially life-changing diagnosis, make sure patients and their family members “feel like they’re the only ones in the world at the moment,” says Ben Weast, a medical family therapist in the Duke Cancer Patient Support Program.

He also advises health care professionals to think beyond the medical realm when meeting with patients and offers the following tips on helping prepare patients and their caregivers for long-term after care.

Write it Down
Knowing the name and stage of the condition lets patients and caregivers look up more information after they leave your office. Offer credible organizations and websites so that patients can avoid inaccurate or outdated information.

Clearly Present Treatment Options
Explain all available treatment options as well as possible adverse effects.

Provide a Timeline of Care
Inform patients how long treatment can take, and estimate how often you will need to see them for follow-up visits. This information is crucial for patients who need to schedule sick leave or make childcare arrangements.

Initiate a Dialogue
Patients want to feel like they’re being heard, Weast explains. “Go into the visit with an attitude of curiosity,” he says. Create a welcoming atmosphere in which patients feel comfortable asking questions, and elicit their thoughts so that you can collaborate on their care together.

Encourage Patients to Record Your Conversation
Patients are often scared and confused after receiving a diagnosis and might forget key information from your discussion. Encourage your patients or their caregivers to record your conversation so that they can listen to it later.

Refer Patients to Support Groups
Many patients experience distress when coping with a long-term illness and often need support services. Refer patients to local support groups, and recommend online forums and social media groups that patients can join.

Weast frequently encounters patients who are anxious or frustrated because they did not initially receive adequate information. He advises all health care professionals to ask for regular feedback from patients and their families. “Ask, ‘Do you feel like I’m hearing you?’” Weast says. “Asking questions like that to generate feedback is honestly the easiest and best way to find out if there is a challenge going on.”