Patients in hospices and nursing homes are suffering needlessly because they cannot get pain medicines, medical care professionals say. The issue: A combination of regulatory changes, manufacturing snags and physicians' reluctance to prescribe the drugs in light of a growing number of abuses of opioid painkillers, such as oxycodone and hydrocodone.
Shane Craycraft, administrator at a Middleton, Ohio, nursing home, says residents there sometimes wait two or three days before receiving much needed pain-relief medication. "There's too long of a delay,'' he says. "It's significantly affecting pain management.''
Greensboro, N.C., hospice nurse Leslie Millikin also sees an access problem. This year, she says, the supply of liquid morphine, a crucial pain medicine, has been extremely limited."If [patients] can't swallow, they need this [medication]," says Millikin.
Part of the initial supply trouble stems from a Food and Drug Administration order against a key drug manufacturer in 2008 that limited the supply of morphine. Then, earlier this year, the FDA told several manufacturers to stop making several pain-relief drugs because these medications, developed so long ago, had not gone through the agency's approval process. Among the targeted drugs was a form of liquid morphine. But patient advocates later persuaded the agency to keep that medicine on the market, citing a hardship on terminally-ill patients.
Compounding matters further is a growing concern about the dangers of opioid medications. While acknowledging that the medications are necessary for pain management, FDA officials point to "serious adverse events," including lethal overdoses, from misuse of the drugs. The number of fatal poisonings involving opioid analgesics more than tripled from 4,000 in 1999 to 13,800 in 2006, according to the Centers for Disease Control and Prevention.
"This is a national priority," says Dr. Wilson Compton, director of the Division of Epidemiology, Services and Prevention Research at the National Institute on Drug Abuse. Often, it's young people getting these drugs from family members and friends, he says, adding that surveys have found high rates of abuse by youths for hydrocodone and OxyContin. "Our goal would be to minimize the abuse and addiction [of opioids] while making sure they remain available to combat pain and suffering," Compton says.
Yet legitimate patients are having far greater trouble than before in gaining access to pain drugs, says the American Pain Foundation, a consumer advocacy group. "Opioid medications are one of the only medicines that help relieve severe pain," says Will Rowe, CEO of the organization. More than 70 million Americans suffer from chronic pain, the foundation said.
A survey of about 1,900 hospice nurses found more than half "identified tremendous problems" in access to pain medicines, says Judy Lentz, CEO of the Hospice and Palliative Nurses Association. "These are people in the last hours of life," Lentz says. "One person with cancer had an unpleasant death due to unrelieved pain."
Some pharmacies have also become dead ends for opioid prescriptions. "My patients are routinely visiting four to eight pharmacies to get medicines filled,'' says Dr. Diane Meier, director of the Center to Advance Palliative Care, in New York. "When I ask pharmacists, they say the distributor can't get it."
The issue has festered to the point that senators Herb Kohl and Sheldon Whitehouse of the U.S. Senate Special Committee on Aging, sent a letter to Attorney General Eric Holder in October urging prompt access to prescription pain medication. "Significant numbers of long-term care and hospice patients may not be receiving much-needed pain relief and other medications ... in a timely manner," the senators wrote. They linked delays in delivering these medicines to the Drug Enforcement Administration's stepped-up enforcement of long-term care and hospice medication practices.
Gary Boggs, a DEA special agent, says nurses in nursing homes often improperly phone in painkiller prescriptions using information on a patient chart. While this practice is fine for hospitals, which are DEA-registered, it's improper for unregistered nursing homes to do similar nurse-ordering, Boggs says. A doctor or nurse practitioner must sign a prescription for narcotics, he says, adding, "We certainly don't want the patients to go without pain medication."
Yet, the nursing home industry claims that physicians generally don't visit these facilities on a daily basis. Sandra Fitzler, senior director of clinical services for the American Health Care Association, says people discharged from hospitals often arrive at nursing homes without medication -- and often arrive Friday nights, when it's hard to track down a doctor. "This has created a mess," she says. The delays lead to patients suffering, Fitzler says.
Dr. Rebecca Patchin, board chair of the American Medical Association, says the group is working with regulators to achieve a balance between fighting prescription drug abuse and meeting patients' need for pain medication.
Some doctors, though, have become reluctant to prescribe opioids due to the growing number of abuses and regulatory hurdles associated with drugs like Oxycontin. Dr. Don Bivins, medical director of a Roanoke, Va., hospice, says physician concerns lead them to "under-prescribe'' -- ordering lower-than-needed dosages, or a smaller quantity of the medication.
Dr. Edward Michna, director of the pain trials center at Brigham and Women's Hospital in Chestnut Hill, Mass., says doctors fear legal problems, citing arrests of physicians in prescribing cases. "Physicians are becoming phobic,'' Michna says, adding, "It's much more difficult and time consuming to prescribe narcotics.''
Susan Sanford, a registered nurse who lives in Urbandale, Iowa, has chronic pain from rheumatoid arthritis, fibromyalgia, and herniated discs in her back. "Most primary care physicians are uncomfortable prescribing doses that a chronic pain patient needs,'' Sanford says. "There's a stigma. I'm uncomfortable putting that information out there. I'm even stuck with that stigma, and I'm supposedly educated.'
"We don't disagree with what [regulators] are trying to do,'' says Lentz, of the Hospice and Palliative Nurses Association. "We want them to understand the consequences to our vulnerable population.''
Painkiller crisis: Patients needlessly living and dying in pain