Hospice Patients Alliance: Consumer Advocacy

Frequently Asked Questions





Answers


• When was the Hospice Patients Alliance formed?

The Hospice Patients Alliance was formed in August of 1998 by experienced hospice health professionals and families of hospice patients.




• I've searched the website but can't find the information
that I'm looking for. What can I do?


All aspects of hospice care are discussed at our site in one way or another. If you can't find it, try the "Search" button on our home page at www.hospicepatients.org




• How can I get this information all together?

We have published much of the information online as an E-book, available by quick download:  The Hospice Patients Alliance Family Guide to Hospice Care (What NO Hospice Will Tell You!)   Our book is an extensive reference with 300 pages detailing all aspects of hospice care, patient and family rights, standards of care, how to get the very best hospice care, and much, much more. The book is available for quick download at our secure e-commerce website through RegNow.com.




• My family had a wonderful experience with hospice. Are there really "rogue" hospices out there that do not provide good care?

Although the majority of hospices provide excellent care, we have received numerous complaints about poor care, lack of care, denial of access to care and even Medicare fraud from all over the U.S.A. We have seen first-hand that some hospices have not remained true to the hospice mission.

The Hospice Patients Alliance was formed as a direct positive response to this type of problem in hospice care. We help those in need to get the care they should be getting in hospice. By providing information about hospice, we empower patients and families to solve problems and obtain the care their loved one needs.




• How can I help prevent hospice tragedies
and support the mission of the Hospice Patients Alliance?


You can help by telling others about hospice and the Hospice Patients Alliance, our website, book and services. If you maintain a website, please consider placing a link to the HPA website on your site. This helps others access the vital information and services provided by Hospice Patients Alliance.

The Hospice Patients Alliance is 100% (one hundred percent) supported by tax-deductible donations from people like you. We receive no funding from any hospice, hospice lobbying group or organization or foundation, so that we can maintain our independence and remain true to you and your loved ones! You can support our mission by donating online to the Hospice Patients Alliance right here at our secure donation web page..




• Aren't there other organizations like yours
that promote quality hospice care?


There are several organizations promoting quality hospice care. Even hospice lobbying groups promote "hospice care." But they do not serve as "watchdog" advocacy groups for the hospice patients, families or caregivers. The members of hospice lobbying groups are hospice agencies that themselves provide the care or lack of care to the patients. So the lobbying groups do not wish to "bite the hand that feeds them" by alienating the members that provide dues funding their hospice lobbying groups.

The Hospice Patients Alliance is the only organization we know of that provides full information on all aspects of hospice care including quoting the federal law on hospice right on our website. There are several organizations that appear to be hospice advocacy groups. But when one looks at who is on the Board of Directors of these organizations, it is questionable how far these organizations will go to tell the whole truth about what your rights are and what you can do about any problems. If Board members of these organizations include directors of large hospice agencies or corporations, do you think they would do anything that could reflect adversely on their own reputation or reveal their own violations of the standards of care?

We realize that when there is a problem in hospice, the patients and families need help quickly. You cannot wait for an agency to play around with you or your loved ones (giving you the "runaround")! In most cases that are reported to us, families tell us that they are not getting cooperation from the hospices. They are often desperate and do not know what to do or who to contact to get action immediately which will help their loved one.

Time is on the side of the hospice that is not providing needed care. They can delay, and in the meantime, a patient may die while the hospice continues to collect full reimbursement from Medicare or the insurance company. Families often wish to "forget it all" after their loved one passes on.

You need to get action promptly, and that's what we help you do, freely. Most other organizations do not provide the full information on how to file a complaint against a dishonest or "rogue" hospice that is not providing proper care. We have received numerous reports from families who got a "runaround" from the hospices, the government or hospice organizations. The Hospice Patients Alliance explains all the services which hospices must provide and how to quickly deal with the hospice, or even change hospices if necessary.

In addition, we actively assist patients and families resolve their hospice problems, and provide information on making a complaint if the hospice refuses to abide by the hospice regulations/standards of care. Hopefully, problems can be resolved without making a complaint, but making a complaint will "help" the hospice to change, plus it leaves an official record of the problem that others can review when determining for themselves what kind of agency a particular hospice is.




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