Hospice Patients Alliance: Consumer Advocacy


You can rest assured that the Federal and State governments have specific standards of care written into law to protect you and your loved one. Federally recognized hospice care in the United States began with implementation of parts of the Social Security Act (including Sections 1102, 1861 and 1871/42 U.S.C. 1302 and 1395hh and other sections). Regulations governing the conditions under which hospice agencies may participate in the Medicare hospice benefit are spelled out in the US Code of Federal Regulations, hospice regulations originally published in the Federal Register.

Hospices must meet these "Conditions of Participation" to become licensed and certified by state regulators and to be allowed by the Centers for Medicare Services (CMS) to continue to particpate in the Medicare hospice program. Without certification as meeting these standards, hospices cannot receive reimbursement for enrolling patients in their program. "Certification" does not necessarily mean that a hospice actually will comply with all the standards in any one patient's case; it simply means that after the last inspection, the regulators decided to certify the hospice as meeting the standards. There are many reasons why state inspectors may not find all violations occurring in any one particular hospice agency's program of services.

Hospice administrators are extremely aware of what the regulations are, however hospice staff are not always fully informed about all the details of the standards of care. In the case of rogue hospices which choose to consciously violate the standards for their own financial benefit, you can be sure that most of the hospice staff do not really understand all the laws governing hospice (however well-motivated hospice staff may be).

The rogue hospice agencies take a calculated risk when they violate the standards, basically betting that these violations will not be discovered by inspectors, or that even if discovered, they can take actions to avoid being decertified. Their actions clearly show that they believe that they will, in the long run, benefit more financially by violating the standards than by complying with the standards. However, if you are fully informed about your rights, you can protect your loved one and yourself from exploitation and easily require the hospice to provide all the care needed for your loved one.

The Federal law on hospice can be found in any metropolitan public library in the books containing the Code of Federal Regulations (See 42 CFR ch iv. Part 418 which governs hospice). Ask your reference librarian for assistance.

State administrative rules governing hospice can be found at our list of state administrative rules governing hospice or by searching at your own state websites. Then look under "Administrative Law - Hospice", "Administrative Code - Hospice" or "Regulations - Hospice", ...or you can search at:<<p>

  • Cornell University Law Library's website
    You can find links to your State's laws on healthcare in general and then search on the state website for hospice at this site — an excellent resource!

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