Hospice Patients Alliance: Consumer Advocacy


The most important Federal and State law governing hospice requires that hospices provide all services necessary to meet the needs of the terminally ill patient enrolled in the licensed hospice. 1 This law requires services to be available as needed seven (7) days a week, twenty-four hours a day. The immediate problem most families might encounter is their lack of information about what actually is required under the law. If you don't know what is required, you don't know what services you are entitled to receive!

If you're don't know what the law says, you can easily be hoodwinked by those who might attempt to short-change you and not provide certain services. As difficult as it may be to imagine that those caring for your loved one might not provide everything needed for your loved one, certain hospices do routinely violate their patients' rights to care, for their own financial benefit. This can easily be verified by requesting a copy of the State survey/inspection summary reports of hospices which violate the laws and by requesting copies of summary reports of inspections conducted in response to complaints against the hospice. If you do request a copy of such survey summary reports, it is very important that you specify that you are requesting the information under the Freedom of Information Act (which requires the State to release this information). This is the kind of information the hospice will never want you to see or to be aware of, because it can be extremely revealing about the actual problems occurring at a hospice.

Because hospices are reimbursed on a per diem (per day of enrollment in the program) the hospice benefits financially when it provides fewer services and loses financially when it provides more services. The daily reimbursement does not increase when more services are provided; the daily reimbursement does not decrease when fewer services are provided: fertile ground for health care fraud, wouldn't you say!

The federal and State laws are supposedly designed to assure that the hospices provide you with all the care needed for the care of your loved one. However, a major focus of the law is to assure that the Federal and State governments get what they are paying for. The government does not like to hand out money without getting services in return. In those cases where services are not provided, even though the hospice is billing the government for full services, fraud is occurring, which must be reported to the U.S. Office of the Inspector General and the U. S. Attorney's Office for your local area.


The Code of Federal Regulations that governs hospice care is located at 42 CFR chapter iv. Part 418.50 and states that "A hospice must maintain compliance with the conditions...[and] a hospice must...make nursing services, physician services, and drugs and biologicals routinely available on a 24-hour basis; [and] make all other covered services available on a 24-hour basis to the extent necessary to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of terminal illness and related conditions; and provide these services in a manner consistent with accepted standards of practice." See the section on Federal law for the complete laws governing hospice care.

If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Care and visit our resources and links section (with hundreds of vital resources listed).

Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you wille consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law.

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