Nothing seemed to help the patient — and the hospice staff didn’t know why.
They sent home more painkillers for several 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: She was high on her mother’s medications, stolen from the hospice-issued supply.
Leslie Blackhall, the doctor who supervised the care of that patient and two similar casesat the University of Virginia Health System’s palliative care clinic, uncovered a wider problem after unraveling the reasons for the pain: As more people die at home on hospice, some of the addictive drugs they are prescribed are ending up in the wrong hands.
Hospices have largely been exempt from crackdowns in many states on opioid prescriptions because dying people may need high doses of opioids. But as the opioid epidemic continues, some experts say hospices aren’t doing enough to identify families and staff members 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, head of palliative medicine at U-Va., sounded the alarm about drug diversion in 2013, when she found that most of the 23 Virginia hospices she surveyed didn’t have mandatory training and policies on the misuse and theft of drugs. Her study spurred Virginia’s hospice association to create guidelines encouraging its members to assess the risk of misuse, and it prompted national discussion among hospice experts.
A third of hospice patients receive care in a private 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 painkillers were being stolen day after day, allegedly by neighbors.
•In Monroe, Mich., medications for a child dying of brain cancer kept disappearing. Among the items lost was a bottle of the painkiller methadone.
•In Clinton, Mo., a woman in hospice care began vomiting in the midst of a family conflict: Her son was fighting with a sibling suspected of stealing her medications. The son implored the hospice agency to move his mother to a nursing home to escape the situation.
In other cases, paid caregivers or hospice workers steal patients’ pills. In June, a former hospice nurse in Albuquerque pleaded guilty to diverting oxycodone pills by recommending prescriptions for patients who didn’t need them and then intercepting the packages with the intention of selling the drugs.
Hospice, available to those who are expected to die within six months, is seeing a dramatic rise in enrollment as more people choose to focus on comfort instead of a cure at the end of life.
The fast-growing industry serves more than 1.6 million people a year. Most hospice care is covered by Medicare, which pays to send nurses, aides, social workers and chaplains, as well as hospital beds, oxygen machines and medications to patients’ homes.
There is no national data on how frequently these 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 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 die within two weeks of enrolling, 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.”
Earlier this year in Missouri, government investigators installed a hidden camera in a 95-year-old hospice patient’s kitchen to investigate suspected theft. As a result, a personal-care aide was charged with stealing the patient’s opiate painkillers and replacing them with acetaminophen, the active ingredient in Tylenol. Hospice nurses in Louisiana and Massachusetts also have been charged in recent years with stealing medication from patients’ homes.
In Oxnard, Calif., in 2015, a person claiming to be a hospice worker entered the homes of five patients and tried to steal their morphine, succeeding twice, state inspectors found. The state cited the hospice for failing to report the incidents.
But many suspected thefts don’t get caught on hidden cameras, or even reported.
In Norwich, Vt., in 2013, a family looked for morphine to ease a loved one’s shortness of breath. But the bottle was missing from the hospice-issued comfort-care kit. The family told the hospice they suspected that an aide, who no longer worked in the home, had stolen the drug, but they had no proof. State inspectors cited the hospice, Bayada Home Health Care, for failing to investigate.
David Totaro, a spokesman for Bayada, told Kaiser Health News that situations like that are “very rare” at the hospice, which takes precautions, such as limiting medication supply, to prevent misuse.
Medicare has not released public data on how many opioids it pays for hospices to provide. But OnePoint Patient Care, a 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 robbery attempts, which have happened on occasion.
For family members struggling with addiction, bottles of pills lying around the house can be hard to resist. Sarah B., a 43-year-old construction worker in Vancouver, Wash., said that when her father entered hospice care at his home in Oregon, she was addicted to opioids, stemming from a hydrocodone prescription for sciatica.
After he died, hundreds of pills were left on his bedside table. She took them all — enough Norco, oxycodone and morphine to last a month.
“I have some shame about it,” said the woman, who was one of her father’s primary caretakers and who declined to give her full last name because of the nature of her actions.
She said the hospice “didn’t talk about addiction or ask if any one of us were addicts or any of that.”
“No one gave us instructions on how to dispose of all the medications that were left,” she added.
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.
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 the agency forbids those staff members from destroying the meds themselves unless that is allowed by state law. Leftover pills belong to the family, which has no legal obligation to destroy them or give them up.
However, some states are taking action. In the past three years, Ohio, Delaware, New Jersey and South Carolina have passed laws giving hospice staff authority to destroy unused drugs after patients die. Similar bills moved forward in Illinois, Wisconsin and Georgia this year.
In Massachusetts, one of the states hit hardest by drug overdose deaths, VNA Care Hospice and Palliative Care advises families to empty leftover pills into cat litter or coffee grounds before disposal. (Flushing them down the toilet is considered environmentally hazardous.)
But families “don’t have to comply,” said VNA Care medical director Joel Bauman. “Our experience is maybe only half do. We don’t know what happens to these medications. And we have no right, really, to further inquire.”
Hospices across the country said they take precautions, including counting pills when nurses visit homes, limiting the volume of each drug delivery, giving families locked boxes for medication and giving patients random urine tests. They also said they prescribe medications that are harder to misuse, such as methadone.
Some, like VNA Care, have also started screening families of patients for history of drug addiction and writing up agreements with families outlining the consequences if drugs go missing.
But “there’s so much moral distress” about punishing dying patients for family members’ actions, Bauman said, adding that he tries to avoid doing that. “Why should we fire a patient for having inappropriate pill counts, when it may not be their fault in the first place?”
Although 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,” she said. 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.”
Kaiser Health News, a nonprofit health newsroom whose articles appear nationwide, is an editorially independent part of the Kaiser Family Foundation.