We All Want To Live At Home In Old Age, But Know Nothing About the Quality of Care We’ll Get There

MARCH 19, 2014 BY HOWARD GLECKMAN

More than eight of every 10 people who need long-term support and services receive this care at home rather than in nursing homes or other institutional facilities. And nearly all the assistance they receive at home is provided by family members, not paid aides or nurses. Yet, we know nothing at all about the quality of that family help.

Much is undoubtedly delivered with great love and compassion. But, sadly, it is also provided by family members who have no caregiving skills. For instance, they often don’t know how to safely lift a frail relative out of bed, or how to help her bathe.

And, we know nothing about how many people fall because a family member can’t manage that transfer. Or, how many are malnourished or dehydrated because their spouse or adult child doesn’t know how to feed them or help them drink. Or, how many family caregivers injure themselves trying to move a frail spouse or parent.

What about paid aides? We have some information about the quality of Medicare home care delivered after someone has been hospitalized. We know much less about the quality of Medicaid’s home-based, long-term services. And, we know almost nothing about privately-paid direct care workers.

What we do know is sketchy. In an article published March 12 in the journal PLOS One, a group of researchers reviewed 20 years of data on paid home care in the U.S., Canada and the United Kingdom. Their controversial finding: There has been little improvement in either life expectancy or quality of life for people getting home care. But the authors warn that limited information and poor reporting by home health providers may have affected their study.

In the U.S., Medicare publishes some quality measures of post-acute care provided by certified home health agencies. You can check it out here.
(http://www.medicare.gov/homehealthcompare/search.html)

As far as it goes, Medicare’s Home Care Compare is helpful. But it doesn’t go very far. The quality measures are limited and focused only on post-acute care for people discharged from a hospital. They do not include long-term care services–which are funded by Medicaid, not Medicare. And many home care providers are excluded entirely.

That’s because home health agencies often provide only “private-pay” care and are not certified by Medicare or Medicaid. There is also no quality information about the huge “grey market” of home health aides—the tens of thousands of independent contractors who get jobs by word of mouth, by posting a 3×5 card on a supermarket bulletin board or through an ad on Craigslist.

Some of these aides are terrific. Some are incompetent or worse. The problem is: We don’t know.

There are three dangers to this lack of knowledge:

• It is difficult for families to pick good caregivers without some benchmarks to help define quality. What makes a good aide for someone with long-term chronic illness, and how does any given aide measure up? Most consumers have no idea.
• Government is pushing Medicaid-based care out of nursing facilities and into the community. But if this change is going to improve the quality of life for those with chronic conditions, we need to identify the flaws in the way we deliver home care and fix them. Government regulators focus on Medicare-skilled nursing facilities, not on support and services delivered at home.
• It is hard to advocate for better caregiver training without evidence that both paid aides and family caregivers need this preparation. I’ve seen great care giving training programs (the Schmieding Center in Arkansas is one of the best) but making them widely available will take resources and a public commitment that won’t be forthcoming until policymakers realize how serious the need is.

Sadly, caregiver groups have been reluctant to support research on the quality of family assistance, perhaps because they think evidence of shortcomings will hurt support for home-based care. I think they are missing the bigger point: Good research will help improve the quality of care for their loved ones. And that, after all, is the point.