Study Highlights Difficulties End-Of-Life Caregivers Face

Caring for terminally ill

Researchers at Mount Sinai School of Medicine found that dying adults require twice as many hours of care per week compared to those not near the end of life.

A recent study, published in the July edition of Health Affairs, at the Icahn School of Medicine at Mount Sinai showed that end-of-life caregivers were more likely to have physical difficulty related to providing care to end-of-life patients.

Approximately 2.5 people on average act as caregivers to older adults nearing the end of life in the United States.

Researchers used the National Health and Aging Trends study linked to the National Study of Caregivers to analyze trends in end-of-life caregiving in the United States and found adults nearing the end of life received 61.3 hours of aid per week compared to 35.5 hours per week for older adults not nearing the end of life.

“This study reveals the huge reliance our society places on family and other unpaid caregivers throughout the course of serious illness and especially at the end of life,” Dr. Katherine Ornstein, assistant professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine, said in a press release. “Although receipt of paid caregiving increases toward the end of life, the vast majority of older adults do not receive any paid help. They are relying on families for their care, which is often quite complex and challenging. We must recognize and support the vital role of family in end of life care.”

The study found that 35 percent of end-of-life caregivers reported physical difficulty compared to 21 percent of other caregivers. Approximately 51 percent of end-of-life caregivers report having no time to themselves compared to 40 percent of other caregivers.

Spouses serving as end-of-life caregivers reported the most challenges including depression and physical difficulty.

“The challenging job of a caregiver is not usually restricted to a few months before an individual dies and we must do more to support them throughout the often long course of serious illness. Palliative care, which provides an added layer of support for patients and families in the setting of serious illness, is one critical tool to support caregiving families. State and federal legislation, as well as workplace policies, are also essential to providing the needed support to seriously ill people and their families,” Ornstein said.