Dying At Home In An Opioid Crisis: Hospices Grapple With Stolen Meds

To get paid a daily fee by Medicare, hospice agencies face many requirements. They must lay out a plan of care for each patient, ensuring they'll treat all symptoms of the person?s terminal illness. And they're required to be on call 24/7 to keep patients comfortable, but because each patient is different, there's no mandate spelling out how often staff must show up at the home, except for a bimonthly supervisory visit. Hospices must stipulate in each patient's care plan what services will be provided, when and by whom, and update that plan every 15 days. Hospices are licensed by state health agencies and subject to oversight by federal Medicare officials and private accreditation groups.

At its best, hospice provides a well-coordinated interdisciplinary team that eases patients' pain and worry, tending to the whole family's concerns. For the 86 percent of Americans who say they want to die at home, hospice makes that increasingly possible.

But when it fails, federal records and interviews show it leaves patients and families horrified to find themselves facing death alone, abandoned even as agencies continue to collect taxpayer money for their care.

In St. Stephen, Minn., Leo Fuerstenberg, 63, a retired Veterans Affairs counselor, died panicked and gasping for air on Feb. 22, 2016, with no pain medication, according to his wife. Laure Fuerstenberg, 58, said a shipment sent from Heartland Home Health Care and Hospice included an oxygen tank, a box of eye drops and nose drops, but no painkillers.

Leo Fuerstenberg of St. Stephen, Minn., shown here in 2013, died in home hospice care in February 2016 at age 63. His wife, Laure, said hospice staff failed to respond to her calls for help as he struggled to breathe. (Courtesy of Laure Fuerstenberg)

?They were prescription drugs, but it didn't say what they were or how to give them,? she recalled. "I just panicked. I called the hospice, and I said, 'We're in trouble. I need help right away.' I waited and waited. They never called back."

For more than two hours, she tried desperately to comfort her husband, who had an aggressive form of amyloidosis, a rare disease that affects the organs. But he died in her arms in bed, trapping her under the weight of his body until she managed to call neighbors for help.

"That last part of it was really horrible," she said. "The one thing I promised him is that he wouldn't be in pain, he wouldn't suffer."

Later, state investigators determined that Heartland's on-duty hospice nurse had muted her cellphone, missing 16 calls for help. Hospice officials did not respond to repeated interview requests.

"They never followed their protocol, and I've never had anybody from there say 'We failed, we were wrong,'" said Fuerstenberg, a school counselor who said she relives her husband's death daily. "If that had been me on my job, I'd be fired."

Her account was among more than 1,000 citizen complaints that led investigators to uncover wrongdoing from January 2012 to February 2017, federal records show. But experts who study hospice say many more families may be too traumatized to take further action.

The complaints offer only a glimpse of a larger problem, warned Dr. Joan Teno, a researcher at University of Washington in Seattle who has studied hospice quality for 20 years. "These are people who got upset enough to complain."

Officials with the National Hospice and Palliative Care Organization (NHPCO), an industry trade group, said that such accounts are inexcusable ? but rare.

"I would venture to say whatever measure you want to use, there are an exponential number of positive stories about hospice that would overwhelm the negative," said Jonathan Keyserling, NHPCO's senior vice president of health policy.

"When you serve over a million people and families a year, ? you're going to have instances where care could be improved," he added.

But even one case is too many and hospices should be held accountable for such lapses, said Amy Tucci, president and chief executive of the Hospice Foundation of America, a nonprofit focused on education about death, dying and grief.

"It's like medical malpractice. It's relatively rare, but when it happens, it tarnishes the entire field,"she said.

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