By Howard Back, a Medicare Beneficiary from California
Medicare funding for hospice services is a wonderful thing.
But there is a missing element in the system: there is no timely way a hospice patient can appeal failure of a hospice to provide a drug, or piece of equipment or other service that the patient’s physician prescribes.
Many hospices, both for-profit and not-for-profit, may make decisions that put their bottom line ahead of the patient’s best interest. A hospice may take Medicare’s per diem payment, but not provide the care and services necessary to ensure that dying patients do not suffer and that their families are adequately and appropriately supported.
I know, because I have “been there.” My wife lay dying in February 2008, in agonizing pain from spinal stenosis, severe osteoporosis, diabetes, rheumatoid arthritis and other conditions. Increasingly large doses of morphine and fentanyl failed to provide pain relief. Her personal physician asked her hospice provider to start her on Actiq “lollipops,” the only way he could suggest to alleviate the pain. Hospice refused.
I immediately bought the medication (it cost $5,940). The "lollipops" helped – giving temporary relief from break-through pain. My wife died four weeks later. I requested payment for the medication. Hospice refused.
I have been trying since 2008 to recover the moneys spent for the “lollipops.” Finally, I initiated a lawsuit.
Medicare told the court that 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 Form CMS-1490S. The Court of Appeals accepted that and dismissed the case as moot. See: Back v. Sebelius, 684 F.3d 929 (9th Cir. 2012). But this is not an appeal process that has any value or merit; more than two years after that court decision, I continue to get nothing but a series of run-arounds.
At the moment there is no legitimate process that lets a Medicare beneficiary appeal a hospice denial. There should be one!
What is needed is for a hospice patient to be able to get an expedited (within 24 hours) review of a hospice refusal to provide necessary care. Regulations should require that a patient receive a notice of his/her right to an expedited appeal when one enters hospice care. This would be an important protection for persons who are dying.
I continue to seek action by Medicare, not for the dollars involved, but out of principle. I worry about what could happen to other people like my wife.
My wife was fortunate; we were able to pay for the expensive medications that hospice denied; others may not be able to.