Hospice Patients Alliance: Consumer Advocacy


All of the information provided in this website is believed to be accurate and reliable; however if you are using this information for research, we highly recommend that you verify your results by consulting the official sources of the information. For example, state and federal laws or administrative codes may have changed recently. So, in some cases you may need to update the information. For this reason, if you need the latest version of any law or regulation for legal action, you must consult an official version of that law or regulation, most often in printed form available at a public library in the "supplement" section to the law or code. The Federal Register publishes changes to federal laws and code, and states also publish updates on their own laws and codes. You should consult with your local librarian for directions in how to acccess the latest releases of such documents from the government. Do not rely on the specific text contained in this web page if the precise language of a law is important for your purposes: you must consult an "official" government source for the latest updated version.

Some hospice physicians and nurses have requested that Hospice Patients Alliance provide another form of disclaimer. These defensive hospice workers feel uncomfortable with the reality going on in hospice and would like HPA to state that "not every hospice is violating the standards, etc." So, as we say throughout our site, not every hospice is violating the standards, but some are. Some hospice administrators intentionally violate the standards in order to bolster their financial revenue stream. In other situations, a staff member may have an agenda that conflicts with the standards of care. Hospice is not immune from the problems rampant in all arenas of health care, contrary to those hospice physicians or nurses who are upset with the news coming out about the serious problems in hospice.

Is the acute care hospital arena subject to having major, even life-threatening problems? Certainly. Not a week goes by when there isn't some new article about medical errors in health care, surgeons amputating the wrong leg or something and misdiagnoses causing harm or even death to patients, and that occurring in some of our nation's finest hospitals! This doesn't mean that there aren't good physicians and nurses out there, it is just part of the reality.

Is the nursing home arena subject to having major, even life-threatening problems? Certainly. Not a week goes by when there isn't some new article about patients dying when getting caught in the bedrails or falling and breaking bones, or dying because nobody came to answer the call light for an hour or more. Sometimes these problems occur in some of our nation's finest nursing homes! This doesn't mean that there aren't good physicians and nurses out there, it is just part of the reality.

Is the home health care arena subject to having major, even life-threatening problems? Certainly. Not a week goes by when there isn't some new article about patients having difficulty getting the attention they need, lack of needed services, health care fraud and other problems. This doesn't mean that there aren't good physicians and nurses out there, it is just part of the reality.

For each of the above areas: acute care hospitals, nursing homes, home health care, we could list literally thousands of articles to prove that the problems in each area are quite substantial and in some cases, life threatening. We don't think that we have to do so. You can find these articles easily with an internet search. But ask yourself :   if all other areas of health care have very serious problems, sometimes life threatening problems, why won't the hospice lobbying groups and well-known spokesmen in hospice openly admit that hospices also have these problems?

Major hospice industry representatives won't speak openly about the serious problems in hospice, because hospice is a special niche in the health care industry where death is expected. And with that expectation comes a great deal of trust to be placed in the hospice staff and agencies. Trust that might be tarnished if the truth was told. The hospice industry representatives do not want the public to know the truth, just as the Plastics or Chemical industry doesn't want the public to know the truth about pollution caused by their factories.

People in the community instinctively fear going to hospice, because they often state they are afraid they'll be hastened to their death if they go in. That is not true in many hospices, but in some, it is true! The public has a right to know what to look for, what to be afraid of and how to prevent it from happening to their loved ones. No hospice has the right to prevent the public from knowing the truth about what is going on in hospice. That's why Hospice Patients Alliance is at the forefront of giving out the truth about hospice: the good and the bad.

We give you the full picture of what is happening in hospice: a full description of all the services which hospices have to provide, a full description and listing of the actual standards of care and regulations and real sources of help when the hospices themselves do not come through for your loved one. Why is it that not one hospice agency publishes on its website all the regulations and standards of care and explains how to file complaints when the hospice doesn't comply with the standards? They are acting out of self-interest: interest in the hospice agency as a business corporation, not acting out of what is best for the patient and the family

Patients and families need full information today, whether in a hospital, nursing home, home health or hospice setting. Patients and families need to learn how to be their own advocates for good health care, because they cannot depend on the system to always provide the right care, or even, safe care. Hospice Patients Alliance provides the full picture of hospice, not just the "syrupy sweet" positive "info-mercial" type PR presented in the Bill Moyers program "On Our Own Terms" about hospice and end of life care ... In that excellent series of TV programs, there was a wonderful presentation of the ideal of what hospice can be and is in some hospices. However, there wasn't even one mention that hospice itself might be the problem.

In the Bill Moyer's series on end of life care, hospice was presented as the compassionate answer to distessing symptoms at the end of life .... as it should be. But the reality in hospice today is not all ideal, nor is it all pretty. We receive complaints from all over the USA about "rogue" hospices and staff that violate standards and devastate the patient and family's rights. That type of abuse has to be stopped. Families can stop some of this abuse when they are forewarned and ready to take action to protect their loved ones if necessary. From what? ... you may ask. From overdosages with sedatives, failure to provide needed services, unresponsiveness to calls when the patient is in crisis, involuntary euthanasia and more.

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, or 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. We hope you will 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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