Hospice care is supposed to ease the final days for those at the end of their life, as well as their families. Sadly, it is not always the case. When hospice caregivers don’t show up, desperate calls to agencies go unanswered and loved ones are in pain, it is family caregivers who must cope, frightened and alone.
The result is what Kaiser Health News Executive Editor Elisabeth Rosenthal calls “DIY hospice care:” It is not an issue that has received much attention, but a recent investigation by KHN reporters JoNel Aleccia and Melissa Bailey found that it happens more frequently than many suspect.
In a new “How I Did It” for AHCJ, Aleccia and Bailey describe how they first came to this story. Like all good journalism, it begins with the legwork — digging through mountains of data from the Centers for Medicare & Medicaid Services (CMS) to find the worst offenders. They reviewed inspection reports known as Form 2657s. Reading through these was tremendously difficult, so they pinpointed a manageable subset of forms based on consumer complaints. That still meant analyzing information from nearly 4,000 forms. From this data they narrowed it down to 418 providers with a record of being no-shows or otherwise failed to provide promised services.
The data painted only a partial picture, Aleccia and Bailey said. Numerous inspection reports were incomplete, or not done according to schedule. Data generated from privately accredited agencies is not made public and so was missing from their analysis.
Still, what they had was a start, and their story struck a chord with many. The investigation first appeared in TIME Magazine and then was picked up by other media outlets around the United States Some readers said they were stunned, while others responded with their own horrific tales of abandonment, despair and helplessness as they watched loved ones needlessly suffer.