Hospice Patients Alliance: Consumer Advocacy


Most people find it inconceivable that a hospice would mistreat its terminally ill patients or their families. However, hospices, like most health care providers, are now administered by executives dedicated to their own personal profit as well as the financial profit of the organization. In the case of some "non-profit" hospices, the administrators are still extremely well-paid in many cases, while some patients do not receive the care that they need, the care that they are legally entitled to and the care which the hospice "promises" it will provide! Hospices which consciously choose to not honor and respect the needs and rights of the terminally ill are called "rogue hospices."

These rogue hospices publicly promote themselves as among the very best providers of hospice care. From the outside, you wouldn't know that you were dealing with a rogue hospice. However, these hospices routinely skimp on the services they provide. They bill to Medicare or Medicaid for full services when they actually do not provide full service. They consciously commit health care fraud. These cases are well-documented in the U.S. Office of Inspector General records within the Department of Health and Human Services. The U.S. Attorney's Offices throughout the country are kept busy prosecuting health care fraud committed by these rogue hospices and other agencies who choose to take the risk of committing fraud, because they don't think that they will get caught.

As outrageous as it may seem, many business people who enter health care see it as an opportunity, not to serve and do "what's right," but to materially benefit their own careers in a agency which receives "sure" funding from Medicare or Medicaid...provide the services and the money will be paid. Being a nonprofit hospice does not prevent administrators and Board Directors from awarding high salaries and expense acccounts and fancy benefit packages to its top executives. The present-day reality of nonprofit corporations no longer truly reflects the public's image of "dedicated" "charitable" servants of the community.

Patients who enter a hospice expect their medical needs to be taken care of by the hospice. They expect good pain control, good symptom management, adequate nursing staff to help them when they need it and access to all the medications needed to relieve their suffering. Families expect the hospice to meet their needs for counseling, whether it involves social workers, chaplains or other spiritual counselors, dietitians or other services.

The law requires the hospice to provide all the services needed to meet the needs of the patient AND the family with regard to the terminally ill patient, the family/caregiver.1 When the hospice fails to provide all the services actually and desperately needed, it is more than just a betrayal of the trust given the hospice by the patient and family, ...it is an abominable exploitation of the most needy patient care populations in the health care industry. It is also a violation of Federal and State law for a hospice to exploit its patients by not providing the services they need and which they are entitled to receive.

While there are many hospices which provide wonderful care, at "rogue" hospices which do not respect the laws:

  • many hospice patients have not received adequate pain medications,

  • many have not received adequate nursing staff to cover their nursing needs at home in times of crisis (Continuous Nursing Care in the home),

  • many hospice patients may be over-sedated against their wishes, or over-medicated with narcotics for pain against their wishes (with consequent premature deaths occurring), and other tragic mistreatments.

Some doctors have an agenda of their own: to "over-sedate" some patients, because the doctor believes that very "aggressive" sedation is effective in pain control or terminal care in general. They simply believe in a "treatment protocol" in apply it indiscriminately to all their patients.

Some doctors do not honor the wishes of the patient about their own care and medical treatment. We have directly seen for ourselves patients who died in agony begging the doctor for relief from pain, when the doctor simply refused to follow accepted standards of care in hospice/palliative medicine and refused to increase the dosage of pain medications! It is likely that in every major city there are a few doctors like that, who either do not care if their patients suffer or do not believe in treating pain properly to relieve it!

Some patients wish to die at home with their family. That's a simple request and in many cases, the family is willing to help out 24 hours a day. Even with the family helping out 24 hours a day, some families do not have the knowledge or skill or experience in working with terminally ill patients. They do not know how to give narcotic or other medications to reliably relieve the symptoms of their loved one. It is for the hospice RN case manager to teach them what they need to learn. But if the family is not teachable, does not have the knowledge base to allow them to learn how to give the medications, or if the family simply is too weak physically to provide the care, the hospice is required by law to provide the needed nursing care at home, during a period of crisis.


See the Code of Federal Regulations, 42 CFR part 418 which governs hospice. This set of federal regulations is provided herein in the section on "Federal Laws governing Hospice."

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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