Nothing seemed to help the patient — and hospice staff didn’t know why.
They sent home more painkillers for weeks. But the elderly woman, who had severe dementia and incurable breast cancer, kept calling out in pain.
The answer came when the woman’s daughter, who was taking care of her at home, showed up in the emergency room with a life-threatening overdose of morphine and oxycodone. It turned out she was high on her mother’s medications, stolen from the hospice-issued stash.
Dr. Leslie Blackhall handled that case and two others at the University of Virginia’s palliative care clinic, and uncovered a wider problem: As more people die at home on hospice, some of the powerful, addictive drugs they are prescribed are ending up in the wrong hands.
Hospices have largely been exempt from the national crackdown on opioid prescriptions because dying people may need high doses of opioids. But as the nation’s opioid epidemic continues, some experts say hospices aren’t doing enough to identify families and staff who might be stealing pills. And now, amid urgent cries for action over rising overdose deaths, several states have passed laws giving hospice staff the power to destroy leftover pills after patients die.
Blackhall first sounded the alarm about drug diversion in 2013, when she found that most Virginia hospices she surveyed didn’t have mandatory training and policies on the misuse and theft of drugs. Her study spurred the Virginia Association for Hospices and Palliative Care to create new guidelines, and prompted national discussion.
Most hospice patients receive care in the place they call home. These settings can be hard to monitor, but a Kaiser Health News review of government inspection records sheds light on what can go wrong. According to these reports:
— In Mobile, Ala., a hospice nurse found a man at home in tears, holding his abdomen, complaining of pain at the top of a 10-point scale. The patient was dying of cancer, and his neighbors were stealing his opioid painkillers, day after day.
— In Monroe, Mich., parents kept “losing” medications for a child dying at home of brain cancer, including a bottle of the painkiller methadone.
In other cases, paid caregivers or hospice workers, who work largely unsupervised in the home, steal patients’ pills.
Hospice, available to patients who are expected to die within six months, is seeing a dramatic rise in enrollment as more patients choose to focus on comfort, instead of a cure, at the end of life.
There’s no national data on how frequently pain medications go missing. But “problems related to abuse of, diversion of or addiction to prescription medications are very common in the hospice population, as they are in other populations,” said Dr. Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine, a professional association for hospice workers.
“It’s an everyday problem that hospice teams address,” Rotella said. In many cases, opioid painkillers or other controlled substances are the best treatment for these patients, he said. Hospice patients, about half of whom sign up within two weeks of death, often face significant pain, shortness of breath, broken bones, or aching joints from lying in bed, he said. “These are the sickest of the sick.”
There is no publicly available national data on the volume of opioids hospices prescribe. But OnePoint Patient Care, a national hospice-focused pharmacy, estimates that 25 to 30 percent of the medications it delivers to hospice patients are controlled substances, according to Erik Jung, a vice president of pharmacy operations.
Jung said company drivers deliver medications in unmarked cars to prevent attempted robberies, which have happened on occasion.
Two recent studies suggest hospice doctors and social workers across the country are not prepared to screen patients and families for drug misuse, nor to address the theft of pain medication.
Medicare requires hospices to establish a safe way to administer drugs to each patient — by identifying a reliable caregiver, staff member or volunteer to manage the drugs or, if need be, relocating the patient. And it requires hospices to set policies, and talk to families, about how to safely manage and dispose of medications.
But there’s little oversight: Unlike nursing homes, hospices may go years without inspection, and even when they are cited for noncompliance, they rarely face any consequence except coming up with a plan to improve.
And in most states, hospices have little control over the pills after a patient dies. The U.S. Drug Enforcement Administration encourages hospice staff to help families destroy leftover medications, but forbids staff from destroying the meds themselves unless allowed by state law. Leftover pills belong to the family, which has no legal obligation to destroy them or give them up.
Though Blackhall helped spark a national discussion about hospice drug diversion, she said she’s also worried about restricting access to painkillers. Hospices must strike a balance, she said.
“It’s important to treat the horrible suffering that people have from cancer,” said Blackhall. But substance abuse is another form of suffering which is “horrible for anyone in the family or community that might end up getting those medications.”