As more care moves into the home, family caregivers are becoming an essential linchpin in the healthcare system.
Approximately 53 million adults provide unpaid care to spouses, parents, children or other relatives, according to the Centers for Disease Control and Prevention. The amount of time such folks spent caring for family members increased from nine hours a week in 2020 to 26 hours in 2023, according to a study released in mid-December by insurance and benefits company Guardian.
Related: Why home is becoming the future of hospitals
New healthcare models, a shortage of direct-care workers and an aging population are contributing to a growing reliance on unpaid family members to help tend to the health and personal needs of sick patients in their homes. The increasing reliance on family caregivers is raising concerns within the Biden administration and among advocacy groups that support family caregivers.
“A lot of family caregivers are assisting with activities of daily living, like bathing and toileting,” said Jason Resendez, president and CEO of the National Alliance for Caregiving. “But almost half of them are providing assistance with complex medical and nursing tasks.”
Expansion of hospital-at-home is a growing area of concern for caregiver advocates. The model lets hospitals treat patients in their homes using telehealth, remote monitoring equipment and face-to-face nurse visits at the same reimbursement rate as in-facility care. Hospitals carefully screen patients for home-based care and to date more than 300 hospitals are participating in the Centers for Medicare and Medicaid Services' Acute Care at Home waiver, which expires at the end of this year.
As CMS and Congress weigh the model’s future, the Biden administration has been trying to clarify the role family caregivers can or should play in hospital-at-home.
In an executive order last spring, President Joe Biden directed the Health and Human Services Department to ensure that hospitals properly evaluate and set clear expectations for family caregivers involved in acute care at home programs. HHS said in an email that hospitals should not expect families to provide “any care in the home, as that is the responsibility of hospital personnel.”
However, the Hospital At Home Users Group—a nonprofit consortium of hospitals participating in the care model—has a different take. It says if a family member is designated as a caregiver by a hospital-at-home patient, they can be responsible for everything from dispensing medication to toileting the patient. If a family member cannot perform some or all tasks, home health aides can be deployed to provide them. However, the amount of care home health aides offer can vary depending on the hospital-at-home program, according to Dr. David Levine, assistant professor at Harvard Medical School and an expert in hospital-at-home.
Scant research has been conducted on the impact the model has had on family caregivers, according to Resendez. However, researchers at Mount Sinai Icahn School of Medicine, Johns Hopkins University, Brigham and Women’s Hospital and technology firm Medically Home are trying to examine that as part of a three-year hospital-at-home study funded by the John A. Hartford Foundation, which works to improve care for older adults.
Growth in home healthcare is another concern for family caregiving advocates as more patients are opting to receive rehabilitation services at home after a hospital stay, rather than at a nursing home. Spending on home health services increased 6% in 2022 compared to 0.3% in 2021, according to CMS.
Home health companies typically provide in-home therapy, wound care and other nursing services. Insurers typically cover a limited number of home health visits following a hospital stay, so hospitals often rely on family members to help supplement home healthcare when a nurse's aide or therapist isn’t present.
Family caregivers play a crucial role in making sure their relatives get the care they need at home to prevent a hospital readmission, said Erin Bosch, regional director for care management at OSF HealthCare based in Peoria, Illinois. She said OSF meets with the patient’s primary caregiver in the hospital and includes the caregiver in the care assessment prior to discharge.
“Depending on the patient’s needs, we would explain what the level of care would look like and we would ask them if they could participate in that,” Bosch said. "It is crucial that the families are aware of what they are getting into when the patient gets home because some people do require 24/7 care.”
In Biden's executive order last spring, he also ordered HHS to ensure that hospitals actively involve family caregivers in the discharge planning process. The administration has taken steps to help family caregivers get necessary training to provide in-home care. In 2024, Medicare will begin reimbursing physicians, nurses, therapists and other healthcare professionals who provide training to family members who support patients with certain conditions.
Correction: An earlier version of this story said relatives spent 20 hours a week in 2020 caring for family members instead of the correct figure of nine hours.
