About Hospice Patients Alliance
HPA promotes quality hospice services whether a patient is enrolled in a licensed hospice or not, whether residing at home or in a facility. HPA protects the rights of patients, their families and caregivers, the bereaved and staff by providing information about the standards of care governing the health care provided, the services required to be provided by law, standard industry practices and how to obtain the very best hospice care available.
HPA provides information about hospice services, directly assists patients, families and caregivers in resolving difficulties they may have with current hospice services, and promotes better quality hospice care throughout the United States of America.
HPA's mission is to promote excellence in end-of-life care that relieves suffering at the end-of-life while allowing a natural death in its own timing. HPA works with patients, families and members of the professional health care community to improve conditions for patients and staff in hospices, palliative care units and elsewhere within our society. HPA views assisted-suicide and forms of euthanasia as incompatible with real hospice care that allows for the unfinished business at the end-of-life, including the healing of relationships within the family and spiritual growth at the end-of-life.
HPA has concerns about the trends in American end-of-life care, especially within the hospice and palliative care industry. Having received numerous complaints for more than a decade, HPA is warning the public that a form of stealth euthanasia is quietly being introduced throughout the health care system in which the misuse of terminal sedation and other methods of imposing death are used without an actual legalization of euthanasia or assisted-suicide. The misuse of terminal sedation is the Third Way to end life within a health care setting and bypasses laws against medical killing. HPA warns the public that the National Hospice & Palliative Care Organization (whose members include the majority of hospice agencies today) is the successor organization of the Euthanasia Society of America.
Hospice Patients Alliance was founded by Ron Panzer, a nurse and HPA President. Ron authored our Family Guide to Hospice Care, Stealth Euthanasia: Health Care Tyranny in America, and Restoring the Culture of Life, as well as many of the articles on the website.
The Family Guide to Hospice Care is the only book of its type that provides all the information you need to protect your loved one and obtain the very best care and can be purchased online. Several excerpts from our Guide to Hospice Care appear in the Palliative Care Patient and Family Counseling Manual used by health care professionals throughout the USA and which is published by Aspen Publishers.
Our Board of Directors includes nurses and family members who had loved ones in hospice in the past. Our Board is made up of people who care about the dying and their families, because we've been there and know how difficult it can be for many. Current Board of Directors include patient advocates Ron Panzer, Vickie Travis, and Debbie Mulcahy.
|Ron Panzer, a graduate of Syracuse University, has served as a consultant on hospice for thousands of families, patients, and staff from all over our nation and been interviewed on various radio shows, including ABC Radio news, WXYZ TV (channel 7) in Detroit. He has been featured as a speaker at several conferences and is the author of the Hospice Patients Alliance Family Guide to Hospice Care., The Heart of End-of-Life Care, Called to Serve, Stealth Euthanasia: Health Care Tyranny in America (Hospice, Palliative Care and Health Care Reform), and Restoring the Culture of Life
His comments on hospice have been quoted in several news outlets including: National Catholic Register "Is hospice movement going beyond end-of-life care?" Feb 17, 2006, CNN, The Kansas City Star "A steadying presence as the end nears; Hospices provide help and comfort, but programs vary, so choose carefully" Sept 9, 2001, The Chicago Tribune "Staffing shortage plagues hospices," Aging population strains resources - Oct 2, 2001, in Texas, The Austin American-Statesman, "Central Texas unprepared for elderly boom, experts say," Sept. 21, 2003, USA Today "The Painful Truth of Hospice Care" and " USA Today "Family Sues Hospice Over Son's Suffering," Aug. 2001, St. Petersberg Times" (Feeding tube case inflames emotions (about the Terri Schiavo case)," Sept., 2003, Austin American-Statesman "Central Texas unprepared for elderly boom, experts say," Sept., 2003, Newsmax "Futile Care: The Terri Schiavo Case" Oct. 17, 2003, Quest magazine (Muscular Dystrophy Association): "Caring & Comfort at the End of Life" Nov-Dec, 2003, vol 10, no 8; LifeNews"Are Euthanasia Advocates Taking Over America's Hospice Industry?" Dec. 19, 2003, Catholic Standard & Times "Hospice's Civil War," March, 2005, Association of American Physicians and Surgeons "Futilitarianism," July, 2005, National Catholic Register "Is hospice movement going beyond end-of-life care?" Feb. 17, 2006, The Toledo Blade "Hospice: Easing the journey for the terminally ill," July 29, 2007, A.A.R.P. Bulletin: "Ask Sid: Are All Hospice Costs Covered by Medicare?." Aug. 14, 2009, and FBI: Texas Hospice Boss Texted Nurses Execution Orders for Patients March 31, 2016.
Ron has provided information on hospice for many national reporters researching end-of-life care and the hospice industry. [See the 6/14/98 article in the Washington Post, "Hospices Big Business, Thanks to Medicare; Exploitation of some patients is alleged" written by Charles R. Babcock and the 11/7/97 article in the Detroit Free Press,
"A business of death and dollars" by Raja Mishra. This article details how a large hospice in Michigan uses what some consider controversial competitive business practices in hospice and has taken over smaller hospices in this area of the nation. Search the online archive of D.F.P. articles for the term "business of death and dollars" on the date specified, to find the article.]
HPA AdvocacyHPA was formed as a positive response to serious violations of patient & family rights by hospice agencies. HPA is not controlled by any hospice agency, institution or lobbying group! Almost all websites related to hospice are controlled by hospices themselves or their lobbying groups, and they do not mention the glaring problems in the hospice industry. While in some cases they provide excellent general information about hospice, they may not offer direct and effective assistance in solving the current problems being experienced by dying patients and their families.
The Hospice Patients Alliance is unique in that it is one of the very few true "watchdog" advocacy groups serving hospice patients, families and caregivers. We are totally dedicated to promoting the welfare of the hospice patients, their families and/or caregivers. No member of our Board of Directors can be an employee or administrator in any hospice Agency or hospice lobbying groups. We truly are a hospice patients alliance, working for the public welfare.
We realize that there are many fine hospices and hospice staff working in the end-of-life care industry. However, when a patient and family encounter problems, they have little idea of where to turn or what to do. When the hospice itself is violating their trust and the standards of care, they are often devastated and suffer needlessly. HPA is here to help.
To obtain answers to your individual questions about hospice services, please first take a look at the topics on our main page, look at some questions and answers at our "Hospice Emergency Answer Center".
The Hospice Patients Alliance is supported totally by donations from the general public. All of our staff work on a 100% volunteer basis (we have no paid staff), so 100% of your donations go to actual program costs in assisting the public. Donations are tax-deductible to the full extent permitted by law. Your support is vital to our mission. For more information about Hospice Patients Alliance, Inc., or to support our work, you can contact us at:
A Letter from Hospice Patients Alliance, Inc.
This website is being provided as a service to all of you who are seeking to learn more about hospice and how to most effectively meet the needs of your loved one, family and yourselves. Hospice Patients Alliance serves you in the spirit of "consumer advocacy" and protection of your rights. We educate the general public about hospice and how to obtain the very best hospice care services available. The health care industry can sometimes seem like a stormy sea of confusing medical jargon and technical information which is not easily navigated. In addition, some health care agencies (and hospice agencies) have strayed from the "charitable" mission we normally associate with "compassionate" "loving" care. For some, the increase of profits for stockholders and top executive salaries has become the goal, rather than providing quality services. We hope to explain the "world" of hospice to you and assist you in your situation.
All of us are touched by hospice in one way or another: a friend, relative or other acquaintance. We hear stories of the type and quality of care provided by hospices all the time. More and more Americans use hospice services for family members or themselves, and the percentage is only going to increase. Why? Because, knowledgeable hospice care is cost-effective & prevents many emergency visits to hospitals during a terminal illness and saves money for the Federal & State government funded Medicare & Medicaid programs, and also saves money for those who are insured by private insurance plans.
In health care today, many agencies use the rationale of "making the organization more efficient" as an excuse for cutting services, staff and quality...all the time maintaining that "quality of services has not been affected." We live in an age of "double-speak" and outright deception by public relations experts who "market" the agency without regard to the actual facts involved in patient care settings. To many patients' dismay, the "baby is being thrown out with the bath water," and services have been cut unconscionably.
Some agencies resort to health care fraud and deprive many individuals of services that they are entitled to receive...and they continue to bill the government for services never provided. Don't let this happen to you! Learn as much as you can and demand the very best services...you're entitled to it. Some of the largest and "most professional-looking" hospices may under-serve their patients. You've paid into the system and now is the time to get what you deserve: for it is through your tax dollars and/or insurance premiums that a large part of the hospice services are funded.
Today's health care industry is made up of a vast number of businesses which exhibit some of the most admirable and most detestable characteristics of mankind: staff with great dedication to serve the patients, ever expanding knowledge of health care, disease and treatments, along with new capabilities and technology. Many administrators are struggling to provide the very best and still meet the challenges of competing in today's "cutthroat" market.
However, there are many administrators whose only concern is expanding a business which happens to be health care and making as much money for themselves as they can, as long as they're in power. Some unethical administrators are getting rich from skimming the money coming into their agencies (paying themselves huge salary, benefit and other perk packages). The rise of huge health care agencies that "bully" other agencies out of business, or acquire numerous health care agencies and create health care "empires" is a disturbing trend. The modern world of business can sometimes be as vicious as a shark-infested ocean, and let the recipient of health care beware: you are being affected by these developments in health care! When large monopolies are created in health care, your freedom of choice is severely limited.
If you're about to enroll in a hospice program or at least thinking about it, you've probably been through much of the "curative-treatment" side of the health care system and may have experienced some problems in your care (hopefully not). Doctors, nurses and other staff who work for health care agencies routinely "see things done" which ought not to be done, and when they protest to "management," they sometimes get feeble excuses (the "runaround") and no appropriate response from their managers in terms of correcting the situation. If they protest too vigorously, some may get terminated and "made an example of" for any other staff that might "dare" to speak up for the patients, families and the standards of care.
There is a real "war" going on right now in the health care industry and many brave health care professionals have risked much to fight on behalf of the patients and the standards of care. On the other hand, too many staff are too afraid to say anything at all, fearing the loss of their jobs and the financial well-being of their families. Many openly complain that "there is nothing that you can do." Fear of personal risk is common among health care professionals. We at Hospice Patients Alliance believe that there is something we can do: be informed, work together for the betterment of all, and stop the exploitation of patients, families and staff.
There are many physicians, other health care professionals and their associations who are severely concerned about the changes taking place in the industry...changes which violate the very heart of health care and compassion. These changes are being made by individuals (at many health care agencies) who care less about compassion and quality care than amassing personal fortunes and creating dividends for stockholders (in for-profit corporations). While it is necessary to make a profit or take in enough to pay for services provided, it is completely inexcusable for top-level administrators to get rich by stepping on the rights of the patients and staff, in order to get there.
There are many administrators with integrity out there, and we salute them. But those administrators who exploit patients, families or staff and knowingly violate the laws governing health care need to be stopped and the justice system needs to prevent them from continuing to do what they've been doing without regard to those who are supposed to be served by their agencies.
While those working within health care are well aware of these problems, the media outlets rarely lay bare the full details of what's going on in the hospitals, nursing homes and hospices, ...especially if it has anything to do with a local agency. Health care agencies often share members of their Board of Directors with members of the media or their Boards of Directors. One hand washes the other, so to speak, and the media protects the local agencies from full disclosure. It is not easily possible to learn about the mistakes, violations and exploitations committed by your local health care agencies!
Those who have tried to publicize the disturbing trends in health care know that there may be a real "wall of silence" regarding this problem, especially on the local level. It's "ok" for local news organizations to report about abuses elsewhere, but newspapers, TV and radio stations will not publish or inform you about daily violations of patients' rights going on right under your nose.... Local media often refuse to publicize problems at local agencies, even when furnished with proof of severe violations. If you wish to find out what's really going on, you've got to be on the inside (or know someone on the inside)!
We have provided within this website, valuable inside information on hospice care and the industry in general, to help you navigate the troubled waters of modern day hospice care. Not all hospices are involved in the violations of patients rights and health care fraud. There are many dedicated staff working in many hospices, and we encourage you to contact one of the local hospices in your area. We know that you may be going through one of the most difficult times of your lives and hope you will contact us if you need any assistance.
Executive Director - Hospice Patients Alliance, Inc.
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 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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