Hospice Patients Alliance

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The Hospice Patients Alliance was formed in August of 1998 as a nonprofit charitable organization and is a 501(c)(3) corporation serving the general public throughout the United States. We were formed by experienced hospice staff and other health care professionals who saw that hospices were not always complying with the standards of care, and in fact, were in some cases, violating the rights of patients and families and exploiting them for financial gain, or not providing adequate care to control pain or other distressing symptoms during the end of life period.

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.

Hospice Patients Alliance was founded by Ron Panzer, a nurse and HPA President. Ron authored our Family Guide to Hospice Care and 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 through our online bookstore. 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 families 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, Ila Swan, Bee Becker and Lisa Brenner.

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 and his comments on hospice posted 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 "Futlitarianism," 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, and A.A.R.P. Bulletin: "Ask Sid: Are All Hospice Costs Covered by Medicare?." Aug. 14, 2009.
 

 

Ron also serves on the advisory board of Citizens United Resisting Euthanasia ("C.U.R.E.") which assists patients endangered by euthanasia and family members seeking to protect them.

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.] 


   Bee Becker is the current Vice-President of Hospice Patients Alliance and is a devoted patient advocate who works tirelessly to help patients and families all over the USA. Bee has given testimony before the U.S. Senate Committee on Aging. Bee is National Spokesperson for Safetyforum - NHAAG (Nursing Home Abuse Action Group), and an Associate Member of the Centers for Justice and Democracy. in November 2006, Bee received the Consumer Advocate of the Year Award from the Indiana Trial Lawyers Association. "In recognition for her amazing work, Becker was named Consumer Advocate of the Year by the Indiana Trial Lawyers Association (ILTA). The award recognizes individuals for their “service and dedication to the citizens of Indiana and the nation." (from Dec 2007 - Jan 2008 United Senior Advocate)

Lisa M. Brenner comes to Hospice Patients Alliance as a natural extension of her prolife work.  After several years of membership in the Respect Life Committee at St. Thomas More Parish in Englewood, Colorado, Mrs. Brenner was elected Chairman and became the prolife liason to the Archdiocese of Denver.  Her interest in end-of-life care was prompted by the death of her grandmother and beloved aunt due to neglect in a nursing home and hospice environment.  She hopes to contribute to HPA in the area of public education of the crisis state of hospice and nursing home care in this country, as well as informing the public of their rights as patients or caretakers in an environment that can be hostile to life. 

Mrs. Brenner earned her B.A. in Mathematics from the University of Virginia and is presently pursuing further educational interests outside the home. 







Former board member, Ila Swan, a nationally known nursing home patient advocate has been a wonderful advocate for hospice patients' rights. She devoted her resources, experience, time and emotions for years. Ila fought to stop the killing in nursing homes since 1991. She is responsible for 4 Congressional Hearings, 4 U.S. General Accounting Office Reports stating our nations nursing homes cause actual harm or death to their patients.
Ila was invited to and did provide significant evidence to Congressmen about the abuse and neglect of the elderly in nursing homes on two occasions. Her testimony resulted in the critique of the nursing home industry along with efforts to reform that industry by Congressman Waxman of California. She chronicled the abuse, neglect and wrongful deaths of patients in nursing homes.
With an average of 1/3 of all hospice patients residing in nursing homes (nationally), HPA is dedicated to protecting hospice patients in nursing homes as well as in their own homes or hospice facilities. Ila Swan (now retired) was an outspoken advocate who has appeared on radio talk shows and national TV, including Fox News' "The O'Reilly Factor" with host Bill O'Reilly. There have been many articles about Ila in national, local and international newspapers and journals. Just do an internet search for "Ila Swan" and you'll find out how wonderful a patient advocate she has been! 

HPA Advisory Board
The HPA Advisory Board was formally created in 2002, but has been active unofficially since long before that.
• Craig Dykgraaf, DC is a patient advocate who brings great insight into the realities of the health care industry. He has served on the state of Michigan Board of Chiropractic and is a founding member of HPA, having served on our board from 1998 through 2002. Dr. Dykgraaf joined our HPA Advisory Board in 2002.

• Charles Phillips, MD an ardent patient advocate in California has been providing advice based upon decades of medical practice and his experience "inside" (and outside) HMOs and managed care. Board certified in Family Practice as well as in Emergency Medicine, he has written two textbooks for EMT and Paramedic training, served as an expert medical witness in legal cases and spoken out against abuses in the health care industry. Dr. Phillips has confirmed that the abuses within the health care industry are often quite conscious and intentional, aimed at maximizing profit while depriving patients and their families of needed and often life-sustaining treatment.

• Cathy Scholler, RN [formerly Koepp], served as HPA corporate Secretary and board member [1998 - 3/2002] is a founding member of HPA, and is the mother of Denine Ruhoff Sharpe who passed away at the age of 29 from a rare form of cancer. Cathy knows firsthand how her daughter suffered needlessly due to inadequate pain control, even though Denine was enrolled in hospice. Even being an experienced nurse did not enable her to assure her daughter received the best of care, when a hospice was intent on not intervening to assure her daughter's comfort. We don't want the public to have to go through what we've seen first-hand! To learn more about Cathy's direct experience with hospice, you can read about Denine Sharpe's Hospice Experience. 

• Dan Rohling, funeral home director, licensed embalmer and consumer advocate has exposed the scams that exploit the public through the funeral home industry. Dan has confirmed the practice of hospice-funeral home scams in which hospices may refer exclusively or even manipulate families to use a particular funeral home. In some cases, funeral homes then give kickbacks to these particular hospices while charging unreasonably high prices to the grieving families! Dan explains how to avoid funeral home scams and get the best value in his excellent book: Funeral Information: The Consumer Guide available through HPA's online bookstore.

Dan is a certified member of the Academy of Professional Funeral Service Practice; he is ombudsman for the Funeral Ethics Association; a member of the Idaho Funeral Service Association; member of the National Funeral Director's Association; member of Cremation Association of North America (CANA); member of Disaster Mortuary services and a member of Global-BMS world-wide disaster services team. Dan serves as a consultant and expert witness in funeral home malpractice cases and investigations of practices in funeral homes. Specialties: Embalming, embalming procedures and regulations, crematory procedures and regulations, cemetery procedures and regulations. Hands on experience with disinterments. Experience in courtroom procedures, depositions (to include video depositions) has/have provided declarations and affidavits. Dan may be contacted at:
Dan Rohling & Associates
1907 West Flamingo Avenue, Ste 68
Nampa, ID 83651-1682
Tel. 208-442-9322 Fax. 208-442-9323

HPA Advocacy
HPA 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:


HOSPICE PATIENTS ALLIANCE, INC.

4680 Shank Street

Rockford, MI 49341

Tel. (616) 866-9127

To purchase our books or to donate 

We hope that our website will be helpful to you and those you love! Your support and feedback are greatly appreciated!