Let's Do Better to Meet the Needs of Cancer Caregivers

Lidia Schapira, MD, FASCO; 2015-2021 Cancer.Net Editor in Chief
November 1, 2016
Lidia Schapira, MD, FASCO

As a community of cancer clinicians, patients, and advocates, I would like to see us transform the way we handle the needs of family caregivers. Recognizing the time caregivers devote to their roles and the value of these services is just a first step. share on twitter We need to generate the evidence that can be used to inform interventions and eventually influence standards of practice.

Cancer clinicians are fully aware of the fundamental role that caregivers play. Spouses, adult children, friends, and neighbors help patients with physical tasks, coordinating care, and support. And as they do this, caregivers often sacrifice their own health in the process. As an oncologist, I know caregivers are our valuable partners in helping patients heal their physical and emotional wounds and navigate the ups and downs of cancer treatments. I sometimes worry about caregivers, if they are distressed or depressed, but it is difficult to reach out because we do not technically have a doctor-patient relationship. So I tiptoe around the issue, asking indirectly if they “are doing OK?” or if they would “like to talk to a member of our team about how we can better support the family.”

In a recent study published in Journal of Clinical Oncology, researchers found that a caregiver’s emotional well-being influenced how patients reported their own quality of life and how patients perceived how well they communicated with their oncology clinicians. These findings will not surprise experienced cancer professionals or patients, but it is important evidence that supports the call to involve and include caregivers in our discussions and treatment plans. This is easier to do in the clinic and outpatient setting, where appointments are usually scheduled in advance, which allows family caregivers to make time to attend the meeting. But this outreach also needs to extend to patients who are hospitalized. Family members often can’t be present for the medical team rounds early in the day because they also have other work and family responsibilities. We in the cancer community need to find creative solutions to ensure that caregivers are informed and regularly updated about the condition of their loved one and the plan of care.

Although it is always difficult to change established practices, let’s think for a moment about how we can collectively move toward a more inclusive and open model of collaborative care: one in which patients and caregivers are more actively engaged, where communication is personal, fluid, and precise. Having caregivers present during consultations means more questions will be asked. And this means that more information will be exchanged, a fundamental component of a strong partnership.

So, let’s leverage the power of technology to help us build more open, inclusive, and collaborative models of care. Let’s figure out how we can better meet the needs of caregivers. And when we do, we won’t be surprised to find that it directly benefits the quality of life of the patient.

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