Missed visits and neglect are widespread for patients dying at home, according to an investigation of the hospice industry from Time and Kaiser Health News.
The investigation took a look at 20,000 government inspection records, some of which described horrific cases that left patients in pain in their final days and families unsure of what to do. The revelations come at a time when the hospice industry is increasingly becoming a focus for M&A activity and potentially more regulations.
In the past five years, families or caregivers have filed more than 3,200 complaints with state officials, leading government inspectors to find problems with 759 hospices. More than half of these were cited for missing visits or other services they had pledged to provide.
The finding is significant; in 2015, there were nearly 4,200 hospice providers paid by the Centers for Medicare & Medicare Services (CMS) to provide care. Hospice care has generally looser requirements when it comes to correcting problems, even when they are uncovered and investigated by federal agencies, according to the Time report. And the complaints are rampant.
One in 5 respondents in CMS’ Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey reported their hospice agency did not always show up when they needed assistance.
“That’s a failing grade,” said Joan Teno, a researcher at the University of Washington who has studied hospice for two decades, told Time and KHN reporters. “We need to do better.”
Records also show that CMS found 21% of hospices, which together served more than 84,000 patients, failed to provide either of two levels of crisis care. Hospices must provide four levels of care to get Medicare payments: routine care, respite care and two levels of crisis care.
CMS records also indicated termination is rare. Despite identifying deficiencies in more than half of 4,453 hospices from Jan. 1, 2012 to Feb. 1, 2017, just 17 were terminated, according to the agency.
Several family members whose loved ones died in hospice care recounted the lack of care and responsiveness from providers, particularly in the last few days of life when symptoms may escalate. Reportedly, 12.3% of patients on routine home care received no skilled visits in the last two days of life, according to a study in JAMA Internal Medicine. Patients who died on a Sunday were also more than three times less likely to have a skilled visit than those who died on a Tuesday.
Teno, who worked on the study, said this suggests chronic understaffing is a cause of missed visits.
Hospices should be held to account for lapses, Hospice Foundation of America President and CEO Amy Tucci told Time and KHN. “It’s like medical malpractice,” she said. “It’s relatively rare, but when it happens, it tarnishes the entire field.”
Other association groups agree that one incident of abuse or neglect is too many, but significant steps have already been taken to better protect hospice patients.
“There have been a number of system improvements designed to help ensure the highest quality of care possible,” Bill Dombi, president of National Association for Home Care and Hospice (NAHC), told Home Health Care News. “Congress has required that quality of care surveys be done on a more frequent basis. Medicare has published hospice provider ratings so patients can choose the best performing organizations. Important patient data is now being collected that will help spot problems before they get out of control.”
Read the full report by Time and KHN here.
Written by Maggie Flynn