When Emily Back lay dying and in excruciating pain, her hospice made a decision that her husband couldn’t accept.
Ignoring a doctor’s order, the organization said it wouldn’t supply Ms. Back, who was 81, with Actiq, a fast-acting, powerful narcotic that a patient sucks on, like a lollipop.
That outraged Howard Back, who then bought the medication on his own dime and filed a lawsuit after his wife died.
Now a California court decision has resulted in an important clarification, determining that Medicare beneficiaries and their survivors have a right to appeal the denial of services by a hospice provider.
“This wasn’t at all clear until this court’s decision,” said Gill Deford, director of litigation at the Center for Medicare Advocacy, which represented Mr. Back in the case.
Hospice care is one of the fastest growing services under Medicare; in 2009, about 1.1 million elderly and disabled beneficiaries received these end-of-life services at a cost of about $12 billion, according to the Medicare Payment Advisory Commission, an independent agency established by Congress.
With hospice, the government pays a flat daily rate that’s meant to cover all necessary comfort care for patients expected to live six months or less. Because hospice providers can’t bill separately for individual items, there is potentially a direct effect on a provider’s bottom line when expensive extra services are ordered.
Yet Mr. Deford said the existing Medicare appeals process appeared to apply to the question “Does this person qualify for hospice care?,” not “Are services adequate, and what happens if a Medicare beneficiary doesn’t think so?”
In Ms. Back’s case, hospice officials maintained in February 2008 that her agonizing pain from spinal stenosis and severe osteoporosis could be adequately treated with drugs on its formulary. But over time she had grown resistant to oxycodone, morphine and time-release fentanyl patches, and her personal physician believed the only potential for relief lay with Actiq, a faster-acting medication.
When the hospice refused to approve the drug, Mr. Back bought it himself, paying $5,940.
Several months later, after his wife had died, Mr. Back asked the hospice, Visiting Nurse Association of the Inland Counties, based in Riverside, Calif., to reimburse him for that expense. The hospice denied the request despite acknowledging that it had received an order for Actiq from Ms. Back’s doctor.
Mr. Back protested, and a bureaucratic runaround followed. The hospice told Mr. Back to contact a Kansas organization that processes Medicare claims for the government. Mr. Back sent a letter to the organization, and an anonymous Medicare representative responded that he was not entitled to file an appeal: that action had to come from the hospice instead. (Copies of all correspondence were provided by Mr. Back for review.)
Mr. Back hired a lawyer. “We wrote letters back and forth for about eight to nine months,” said Sally Hart, a lawyer with the Center for Medicare Advocacy who worked on the case. The upshot, she said, was that the Medicare contractor said there was no process for an individual to appeal the denial of a service by a hospice.
Mr. Back decided to pursue the case out of principle because, he said, “I was worried about what could happen to other people like my wife.”
Fast forward to a July decision in Mr. Back’s case by the United States Court of Appeals for the Ninth Circuit, in California. That document describes how this elderly man was misinformed by hospice and Medicare representatives, and finds that “although the government led Back to believe there was no appeal process,” such a process does, in fact, exist.
If a Medicare beneficiary believes he or she has been inappropriately denied a necessary service by a hospice, the person can file a claim, on a form labeled CMS-1490S,” with a Medicare claims contractor and initiate an appeal if the claim is rejected, the legal decision said.
That’s a victory of sorts, because it makes it clear that beneficiaries have the right to challenge a hospice provider’s refusal to provide a service that a doctor deems necessary, Mr. Deford said. But it’s disappointing because it doesn’t ensure that people receive a notice of their right to appeal when they enter hospice care, or that any mechanism exists for expedited appeals – an important protection for people who are dying.
As for Mr. Back, a resident of Palm Desert, Calif., he now has an avenue to pursue his appeal, but he’s not at all sure he wants to take it. At 84 years of age, “I don’t know if I’m ready to start writing letters all over again at this point of my life,” he said. He said his interest was never really in the money; it was “in making sure other people don’t have to go through what I’ve gone through.”
No one is sure how often such problems occur with hospice patients and their families. Is this something you or someone you know has experienced?
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