Medicare Hospice Care: We Want Your Stories!

Hospice is a program of care and support for people who are terminally ill.  To qualify for Medicare hospice coverage, a doctor certifies that a person is terminally ill, with an expectation of six months or less to live.  Once a person enters hospice, all their medical needs related to the terminal illness for pain management, symptom relief, and other necessary palliative care are arranged by hospice. These needs – including prescription drugs, physician services, physical therapy, and medical equipment- are spelled out in a plan of care developed by the person and their hospice team. Medicare will still cover medical care unrelated to the terminal illness. However, upon election of hospice, a person agrees to forego other Medicare-covered treatment of their terminal illness.  Someone may choose to revoke hospice and return to traditional Medicare at any time.

If a person disagrees with the hospice plan of care and requests a service or medication the hospice can’t or won’t provide, that person must pay out of pocket if they wish to remain in hospice and receive the service or medication.[1] This is true even if their doctor has prescribed or recommended the medication or service. Currently, there is no way for hospice patients to get an expedited decision from Medicare on whether the item or service should be covered. According to the Centers for Medicare and Medicaid Services, the hospice is not required to furnish any notice to the beneficiary or any detailed information on how to submit claims to Medicare and appeal adverse hospice decisions.

We Want Your Hospice Stories

The Center for Medicare Advocacy is interested in hearing from Medicare beneficiaries (or their families) who sought services like medication, therapy or medical equipment from their hospice provider and were denied.  In particular, we are interested in hearing from people who meet the following criteria:

  1. Their doctor prescribed or recommended a medication, service or item;
  2. A request was made to the hospice, which refused to furnish the medication, item, or service;
  3. Payment was made out of pocket by the patient or family member for the medication, item, or service; and
  4. The patient or family inquired to the hospice or to Medicare about how to appeal the denial, but no information was provided.

The last two criteria (#3 and #4) would be helpful, but are not essential.

Please send your stories to:

[1] But see Back v. Sebelius No. 09-1706 (C.D.Cal.), filed September 8, 2009.  Appeal filed January 28, 2011 (684 F.3d 929) (9th Cir.) available at