Support When It's Needed Most

Of all the roles caregivers fill, one is largely unrecognized. Patients with caregiver support can tolerate more chemotherapy over time, compared with patients who lack support, says Maria Silveira, an internist who specializes in palliative care at the University of Michigan and at the VA Ann Arbor Healthcare System.

In her work with patients receiving intravenous chemotherapy, those who were supported by unpaid caregivers had 60 percent fewer discontinuances of their chemotherapy regimens. Cancer patients who were able to receive their chemotherapy at the dose and for the duration prescribed stood a greater chance of achieving remission, Silveira says.

Oral chemotherapy is convenient, but the downside is the drugs must be taken correctly to be effective, and patients get less face time with the oncology nurse. Caregiver support becomes even more essential to ensure that patients take medications properly and at the recommended dose. Medication adherence rates improve markedly when patients know that someone cares, Silveira says. “Caregivers serve an important role in helping patients feel supported,” she adds.

Caregivers can also be of tremendous service by reading all the printed information that accompanies a prescription. Too often, patients taking oral anticancer therapies may not know how and when to take medications, or whether to do so with or without food, and the label on the bottle, like the prescription itself, may not mention those specifics. Oral anticancer therapies are relatively new for patients and providers, and “there aren’t robust standards in place for making sure patients know how to correctly take their oral chemo,” Silveira says.

Caregivers serve an important role in helping patients feel supported.

She suggests caregivers accompany patients to oncology appointments and bring up any concerns about medication adherence with the oncology nurse or the hospital pharmacist. By being an advocate, a caregiver becomes “the single most valuable tool from a clinical perspective,” she says.

Caregivers need a lot of education, and reliable, easy-to-understand information is sometimes scarce. To try to close the gap, Silveira has developed a web-based reference tool, still in the testing phase, designed to provide advice for managing chemo-related symptoms. The goal is to empower caregivers without disempowering the patient, she says. Caregivers who are well-informed can help patients when their strength to persist wanes.

“We’re asking patients to do a lot when we ask them to self-administer a medication like oral chemo that predictably makes them sick,” Silveira says. When the burden seems too great, patients need someone knowledgeable to provide support and encouragement. “It makes them feel they’re not alone,” Silveira adds.