NPR Explores the Toll of Caregiving on Hospice Patient Families

Even with the support of a hospice, the challenge of caring for a terminally ill loved one can be devastating to families. National Public Radio recently reported on families’ frustration as they navigate these difficulties, including their concerns about the quality of hospice care and their wishes that providers could provide more support.

Families often provide more care for their loved ones than they anticipated. While patients and family members can contact a hospice 24/7, clinicians are generally not in the patients’ home around the clock.

“Hospice usually means dying at home. And even though the surveys show it’s what most of us want, it’s not all it’s cracked up to be,” NPR’s Blake Farmer reported. “Medicare says hospice can include home health aides and homemaker services, but in practice, it’s often limited to a couple of days a week … Medicare data reveal that on average, a nurse or aid is only there at the house about half an hour a day.”

About 80% of people in the United States say they would prefer to die in their homes, the U.S. Centers for Disease Control & Prevention indicates.
Hospice utilization among Medicare decedents exceeded 50% for the first time in 2018, according to the National Hospice & Palliative Care Organization (NHPCO).

The vast majority of hospice care in the United States is provided in patient homes, NHPCO has reported. In 2017, more than 97% of hospice care was provided at the routine home care level, compared to 0.3% for both the continuous home care and inpatient respite care levels, with the remaining 1.8% provided as general inpatient care.

“[The NPR report] presents some compelling concerns raised by family members that illustrate the caregiver burden that can be associated with care of patients at the end of life. An unfortunate reality is that the Medicare Hospice Benefit, consistent with the rest of the Medicare program, does not cover extended in-home care,” the National Association for Home Care & Hospice said in a statement. “While these burdens are real, they must be acknowledged as part of a larger crisis that is confronting our health care system and relates to Medicare’s failure, in statute and policy, to allow for comprehensive care that sufficiently responds to patient needs outside of facility-based care. Under hospice, there are limitations to what services the interdisciplinary team can provide.”

Hospices do offer services to help ease the burden on family members including social work and chaplain services, bereavement care, telehealth support as well as support groups and other programs, but families continue to struggle to meet the demands of caring for a dying loved one.

“The death of a loved one is never easy and never routine, and hospice can help a family get through this challenging journey that everyone will face at one point,” Jon Radulovic, vice president of communications for NHPCO, told Hospice News. “Family caregivers — or other intimate network of loved ones providing care in the home — have been integral to the hospice philosophy of care, and they are necessary in allowing people to spend the final portion of their lives in the home. Hospices must work to help educate, train and support family caregivers in a way that prepares them for the hospice experience in the home. That preparation and the ongoing support is a critical piece of what the hospice interdisciplinary team provides to those they care for.”