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AARP Iowa: Half of family caregivers have no home-care training

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Iowa hospital and home-care advocacy groups are divided on a bill in the Iowa Legislature that would require hospitals to take specific steps to identify, notify and instruct family members about how to care for a loved one at home following their discharge. 

The 2018 Iowa CARE Act (SSB 3123) would require that a family caregiver’s name be recorded when a person is admitted to a hospital; that the caregiver be informed when their relative is to be moved or discharged; and that the caregiver is provided instruction on the medical tasks they will need to perform at home.

AARP Iowa cites a study it conducted that found 50 percent of caregivers said they did not receive instructions for medical tasks they conduct for family members at home. The measure would “provide vital support for Iowa’s more than 317,000 family caregivers who help their older parents, spouses and other loved ones live safely and independently at home,” AARP Iowa said in a release. 

An Iowa Hospital Association official, however, said the bill is unnecessary because the steps outlined in the legislation are already required by Medicare regulations that hospitals must follow. 

In addition to the IHA, lobbyists for several hospital systems including UnityPoint Health and Mercy Health Network, are also registered in opposition to the bill, along with the Iowa Nurses Association. The Iowa Alliance in Home Care and Visiting Nurse Services are among organizations registered as undecided. 

A 2015 AARP Iowa survey of 1,000 Iowa voters age 45 or older found that 65 percent of Iowa family caregivers assist their loved ones with complex medical tasks such as wound care and injections, yet 50 percent of current or past caregivers claim they did not receive instruction for the medical tasks they would be performing at home.

“Right now, family caregivers across Iowa are performing medical and nursing tasks for their loved ones; most have no training,” said Kent Sovern, state director of AARP Iowa. “More disturbing, half of all family caregivers whose loved ones were hospitalized did not receive instruction on medical tasks before discharge. We can fix this.” 

The organization estimates that family caregivers in Iowa spend 295 million hours each year caring for loved ones — a contribution totaling about $3.8 billion in unpaid care.

Scott McIntyre, vice president of communication and education for the Iowa Hospital Association, said Medicare rules already address discharge instructions. 

“They’re pretty thorough in their regulations regarding discharge instructions,” McIntyre said. “(Medicare has) what they call their ‘Conditions of Participation’ to be part of the Medicare program. If you don’t meet those requirements, you risk losing their business, and there’s no hospital in this state willing to take that chance. And it’s best practice and an expectation at any hospital that patients and family members will be instructed before they go out the door.” 

McIntyre said that families need to talk to the charge nurse at the hospital if they’re not offered care instructions, or contact the hospital if more information is needed following discharge. 

A national standardized survey of patients known as the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) includes questions for patients about discharge planning. According to 2016 HCAHPS data for Iowa hospitals, nearly 90 percent of patients agreed that hospital staff provided information about what to do during recovery at home. However, only 57 percent strongly agreed that they understood their care when they left the hospital. 

According to AARP, Iowa is one of only 14 states that do not have a law similar to the 2018 Iowa CARE Act in place for caregiving families. AARP maintains that no federal laws, rules or regulations, including those for Medicare, define the steps hospitals must take so family caregivers are engaged in their loved ones’ care. 

Information from an independent advocacy organization, the Medicare Rights Center, indicates that Medicare requires hospitals to follow specific rules for delivering discharge planning services. However, these requirements only apply to those admitted to the hospital as an inpatient. Hospital staff are not required to conduct discharge planning for patients who were seen on an outpatient or observation basis, according to its Medicare Interactive website. 

(Disclosure: The reporter volunteers for AARP Iowa’s Tax-Aide program.)