Assessing Caregiver Burnout for Hospice, Palliative Patients

Given the significance of family caregivers in hospice care, providers can benefit from having tools to assess whether or not they are experiencing burnout.

Burnout is a state of complete mental, physical and emotional exhaustion. Symptoms of burnout can include depression, compassion fatigue, stress and anxiety, and apathy, both in general life and towards work tasks, according to the Mayo Clinic.

To help address these issues — and to help ensure that caregiving remained sustainable — a team of researchers from the Ann & Robert Lurie Children’s Hospital of Chicago and the University of Pittsburgh launched a project to improve assessment of caregiver burnout.


“Caregiver burnout carries high risk for emotional, social and financial consequences for caregivers. There’s a very high number of U.S. adults functioning as caregivers at any time,” Dr. Michael Certo, assistant professor of pediatrics for Lurie, said at the American Academy of Hospice and Palliative Medicine’s Annual Assembly. “We as palliative care clinicians meet caregivers who may be particularly vulnerable given the circumstances under which they find themselves.”

The project’s goal was to develop a standardized method for assessing caregiver distress. An important first step was to understand individuals’ current screening processes and practices then implement a streamlined, targeted solution without disruption to clinical workflows.

The researchers surveyed palliative outpatient clinicians at clinics in southwestern Pennsylvania, yielding a 93% response rate. The survey showed widespread variation in the ways different clinicians measure caregiver distress. About 50% of respondents indicated that they did not feel confident identifying caregiver burnout and that a screening tool would be helpful, according to Certo.


“We implemented the caregiver self assessment questionnaire, which is a validated brief metric developed by the American Geriatric Society. Its content contains 16 yes-or-no questions and two questions answered on a Likert scale, so it’s relatively quick to complete and easy to score,” Certo said. “This screen was distributed to any adult caregiver that accompanied a palliative care patient to their outpatient appointment.”

Based on these assessments, clinicians could offer means of support that fall under four main categories: considering a physician for yourself, discussing respite care options, joining a support group and providing a list of national, regional and local organizations that could potentially help.

The nation’s health care system is lacking in support for caregivers of the terminally ill, who are often left with a heavy financial and logistical burden. Without assistance or relief, these difficulties can impede access to hospice and other types of home-based care.

Research has shown that patients who are faced with end-of-life decisions may be less likely to choose hospice unless they have a network of friends or family who can serve as home caregivers. Even when a caregiver is present, that person may be elderly or ill themselves, or unable to be in the home around the clock due to work or other obligations.

The expense alone can be a struggle for the 48 million unpaid family caregivers in the United States.

Roughly three-quarters of them spend upwards of $7,200 annually for costs related to caring for loved ones, AARP reported. For many caregivers, this amounts to 26% of their income, according to AARP. These costs can include patient medical and non-medical needs or lost income due to missed work days. Around 30% of caregivers cover rent or mortgage payments for their loved ones, while 17% pay for medical costs, AARP indicated.

While the financial costs are measurable, the emotional and physical toll of caregiving is substantial but difficult to quantify.

“All of our positive screens had one particular metric in common, which was feeling completely overwhelmed and or having a crying spell in the past week,” Certo said. “The second most common way to have a positive screen was rating your own level of health, greater than or equal to a 6 out of 10, where 10 is the worst score possible.”

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