Hospice Patients Alliance: Consumer Advocacy



Main Hospice Topics




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TOPICS ARE GROUPED IN THE FOLLOWING SECTIONS:

  1. Consumer Advocacy - About the Hospice Patients Alliance
  2. Choosing Hospice: Is it right for you?
  3. Hospice Services and the Interdisciplinary Team
  4. Financial Issues and Assistance for You
  5. Four Levels of Care You're Entitled to Receive
  6. Keeping the Patient Comfortable "Symptom Management"
  7. Tips on Bedside Care
  8. Understanding & Giving Medications to Your Loved One
  9. Family Worksheets - Questions About End-of-Life Care
  10. Tragic Lessons From Patients Mistreated by Hospices
  11. Problems & Complaints About Hospice Services - What to Do
  12. Links to Other Important Related Sites
  13. Links to Report Fraud in Hospice
  14. Hospice Standards of Care
  15. Recommended Reading and Publications
  16. Making Arrangements: Funerals, Wills and Estate Planning
  17. A Word to Health Care Professionals
  18. Tools for Hospice Professionals
  19. Clinging to the Original Hospice Mission






  1. Consumer Advocacy:
    Hospice Patients Alliance Mission Statement
    1. Letter to the Public
    2. A letter from the Director
    3. We Need to Understand that the National Hospice & Palliative Care Organization
      is the Successor Organization to the Euthanasia Society of America

  2. Choosing Hospice: Is It Right For You?
    1. Care and support available if you need it
    2. Choosing the right hospice in your area
    3. Keeping the Terminally Ill Patient at Home: making it happen
    4. Dealing with approaching death?
    5. Diagnosing a terminal illness: Is it six months or less?
    6. Hospice facilities
    7. How Hospice works: The Physician-Hospice relationship
    8. Advanced Directives
    9. The Protective Medical Decisions Document

  3. Hospice Services and the Interdisciplinary Hospice Team
    1. The Hospice Patient and Family's Role as Part of the Team
    2. Hospice Registered Nurses - Case Manager
    3. Home Health Aides and Homemaker Services
    4. Medical Social Work Services
    5. Spiritual Counseling: Hospice chaplains or the religious counselor of your choice
    6. Volunteer Services
    7. Hospice Medical Director and
      the Attending Physician: At your service
    8. Counseling and Therapy Available In Hospices
    9. Dietitians for Optimum Nutrition
    10. Occupational, Physical, and Speech-Language Therapy
    11. Bereavement Services - dealing with grief
    12. Pharmacist Services
    13. Peri-Natal Hospice: Comments by Paul A. Byrne, MD, Neonatologist

  4. Financial Issues and Assistance Available To You For Hospice
    1. Medicare, Medicaid and private insurance
    2. State Medicaid Hospice Services
    3. Assistance if you don't have Medicare,
      Medicaid or private insurance
    4. What service can you expect?
    5. Liability for Payment for Covered and Non-Covered Expenses
    6. Sad Business: Managing Financial Issues in Bereavement
    7. Preventing Financial Exploitation of Patients

  5. Four Levels Of Care You're Entitled To Receive
    (What you need to know about required services)
    1. Continuous nursing care level of service   (provided at home)
    2. Inpatient care level of services
    3. Exhausted? Get help with Respite care level of services
    4. Routine home care level of services

  6. Keeping The Patient Comfortable:
    (Symptom Management)
    1. Do Not Resuscitate (DNR) orders, power of attorney forms,      advanced directives and patient comfort
    2. Fluid management in terminal illnesses
    3. Food, nutrition, artificial feeding methods, ...
      constipation, & other considerations
    4. Pain control: Methods and standards of care
    5. Physicians & narcotic medications for pain
    6. Prolonging life in the actively dying
    7. Quality of life and quantity of life: Not the same
    8. Respiratory distress and oxygen
    9. Respiratory failure and ventilators
    10. Sedation, pain control and quality of life
    11. Terminal Agitation in the Dying
    12. Understanding standing orders in hospice
    13. Understanding Medication Substitutes and
      Dangers of Switching Medications Even in Hospice

  7. Tips On Bedside Care
    1. Helping Your Loved One Up and Out of Bed
    2. Maintaining A Peaceful Atmosphere
    3. Signs and Symptoms of Approaching Death
    4. Dangers of Leaving Narcotic Medications Out
    5. Having Trouble within the Family during End of Life Care?

  8. Understanding & Giving Medications To Your Loved One
    1. PRN Morphine Orders May Be Inappropriate for COPD Patients
    2. Withdrawing Medications in the Terminally Ill: When is it Appropriate?
    3. Terminal Sedation: Often misused
      To bring about slow euthanasia! - by Nancy Valko, R.N.
    4. Pharmacist Warns Public About Use of Compounded Medications in Hospice
      by Sarah Sellers, PharmD, M.P.H.


  9. Family Worksheets
    Questions About End-Of-Life Care
    1. Understanding the Grieving Process
      (by Reverend Sam Oliver)
    2. Dealing With Grief
      (series of articles from Hospice Foundation of America)
    3. Swallowing the Bitter Pill (at the end of life)
    4. Using the Freedom of Information Act
      (to Check Up On A Hospice's Record)
    5. 10 Essential Traits of Real Patient Advocacy Organizations
    6. Answers to Common Questions About Hospice
    7. "Five Regrets of the Dying" by Bronnie Ware

  10. Tragic Lessons From Patients Mistreated By Hospice
    1. Jose Alvarez's hospice experience
    2. Denine Sharpe's hospice experience
    3. A patient is denied food and water against his will
    4. Has Your Loved One Wrongly Been Threatened with Discharge? Or Under-Served (needed services not provided)?
    5. Other Hospice Cases
    6. Why Hospice Organizations ... Don't Want You to Know the Truth!

  11. Problems & Complaints About Hospice:
    What To Do
    1. For profit and non-profit hospices
    2. Hospice fraud & scams you may encounter:
      (How to avoid them)
    3. Hospice funding: Why you need to know about it
    4. Hospice organizations: Lobbying groups
    5. How vulnerable patients & families are to exploitation
    6. Private insurance case managers: There to help you
    7. Reasons for problems in health care
    8. When nurses, doctors & social workers keep silent
    9. The hospice agency's administration and
      the "business" of hospice
    10. Questionable Deaths, Assisted Suicide, Mercy Killing
      (Euthanasia): What to Do
    11. What to Do Immediately
      If You Suspect Medical Killing In Hospice
    12. When a Hospice Refuses to Release Medical Records:
      What to Do
    13. Making a complaint about Hospice care
    14. Where to Send a Complaint - Directory of State Addresses
    15. Complaint Form for Your Use
    16. To Check on Physicians Record or File Complaints:
      State Medical Board Addresses
    17. To Check on Nurses Record or File Complaints:
      State Nursing Board Addresses

  12. Hand-picked Links To Other Important Websites
    Access sites dealing with Federal law including Code of Federal Regulations on hospice, State law, your own state government, children with terminally ill diseases and hospice, seniors and aging issues, plus other sites dealing with AIDS, consumer advocacy , cancer, general health care, hospice, internet resources, legal information and assistance, medical-health care ethics, mental health, nursing, pain, and public policy/access to political and government representatives, and many other sites related to end of life care.

  13. Links To Report Medicare Fraud
    and Involuntary Euthanasia
    Medicare, CMS, U.S. Attorneys and U.S. Office of Inspector General
    1. Where to Report Medicaid Fraud Occurring at Your Hospice
    2. Reporting Unwanted Euthanasia to the Federal Prosecutors
      (Local DA often won't Investigate)
    3. When Narcotics are Misused You can also Report
      To the U.S. Drug Enforcement Administration for Investigation
    4. Information on Hospice and Involuntary Euthanasias: What to Do

  14. Hospice Standards of Care,
    Regulations and the Laws Governing Hospice

    The following files are technical information about the laws and regulations governing hospice. Most hospice staff are not aware of all of this information, but if you need the regulations, here they are!
    1. Hospice Regulations (Federal and state laws governing hospice:
      1. The uniform standards of care)
      2. HospiceRegulations (prior to 2008)
      3. Hospice Regulations: Updated Federal Law with gov't comments
        reproduced from the U.S. Centers for Medicare Services:
        Hospice Conditions of Participation, 42 CFR part 418 at:
        http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf
      4. Text of Federal Hospice Law without comments at gov't web page
        text of federal hospice law mirrored here at HPA website
      5. Centers for Medicare Services Hospice Information Resources
      6. State Medicaid Manual
        (See Section 4305 - Hospice Services)
      7. HCFA State Operations Manual Section 2080 (an informative but older manual detailing important standards which hospices must fulfill)
      8. Hospice Payment Rates and cap on reimbursement

      9. CMS Hospice Reimbursement Rates and Cap

      10. State and Federal Surveyor Procedures Guidelines (revised 5/21/04)
        (an older manual detailing what the Inspectors look for ... in detail)

        This is an older manual that tells State inspectors what to look for and what violations to cite in each instance. When complaint investigation reports are issued, they are based upon this manual. No hospice would ever show you this manual. In fact, they do not even share it with non-management hospice staff. Start at page 18 of this file for brief explanations of the federal law governing hospice and how hospices get cited when they violate the standards. (42 CFR ch iv. part 418) Originally from: http://www.cms.hhs.gov/manuals/107_som/som107ap_m_hospice.pdf

        This file is a "PDF" type file. If you don't have Adobe Acrobat Reader to read .pdf files, download the free Adobe Acrobat Reader here. You can "zoom" in to make it easier to read by clicking on the "magnifying glass" icon at the top of the Adobe Acrobat Reader screen and then clicking on the page itself once or twice.

      11. Information on Hospice Cost Reporting
      12. Controlled Substances Act
        This is the law that regulates the use, distribution and prescription of narcotics and other controlled substances.
      13. Soc. Sec. Act Def. of Hospice
      14. Hospice Data - FY 1995 through FY 2005
    2. Physicians, nurses and other staff: Advocates for your welfare?
    3. Standards of Care Medical
    4. Standards of Care Nursing
    5. You control the care you get
    6. Hospice patient rights
    7. Your rights as a family member or caregiver


  15. Recommended Reading And Publications Readings for the public and professionals
    1. The Hospice Patients Alliance Family Guide To Hospice Care
      (What No Hospice Will Tell You!)
      understand the standards of care
    2. The Heart of End-Of-Life Care
      exploring the issues at the end-of-life
    3. Called To Serve
      inspired writings about service at the end-of-life
    4. Stealth Euthanasia: Health Care Tyranny in America
      Revealing how the hospice industry has been infiltrated by the euthanasia advocates and is being misused to hasten death in many, but not all, hospices. This is the most-censored story in America!
    5. Restoring the Culture of Life
      (The Ethics of Life in Health Care and Society)
      People wonder how to "fix" what is going wrong in society, and in particular, what is wrong with healthcare today. They wonder what the real solution is. We know that the prevailing culture of death is not interested in solving these problems and crimes, that it is actually promoting them. So, we have to find another way. We must restore the culture of life! This book shows us a way of moving forward toward caring and transforming our lives as well as healthcare throughout the world.
    6. Recommended Movies Involving End 0f Life Issues

  16. Making Arrangements: Funerals, Wills and Estate Planning
    1. "Consumer Guide to Funerals"
      (provided by the US Government FTC)
    2. Hospice - Funeral Home Scams
    3. Estate Planning Guide (from Northern California Cancer Center)

  17. A Word To Hospice Care Professionals
    1. Protecting yourself, your license & family, financial & job security when dealing with fraud at your employer
    2. Reporting Fraud at Your Hospice
      (Protect the public and the Healthcare System)
    3. Dealing with Families in Conflict
    4. Reporting Fraud in Billing at Your Hospice
      Through Qui Tam Legal Action
    5. How to Deal with Corrupt Administrators at Work
    6. Narcan Not Used to Save Patients from Overdose
      (Fear of Pain Crisis is Unfounded)
    7. Terminal Sedation: Is it Good Palliative Care or Euthanasia?
    8. Love & The Corporate Money Machine
    9. Comfortable Compassion?

  18. Tools for Hospice
    (also see our resources page)
    1. After-Death Bereaved Family Interview
    2. Analgesic ladder (World Health Organization; 3 steps)
      from The Agency for Health Care Policy and Research
    3. Caregiver Strain Questionnaire
      Robinson & Thurnher; Jrnl of Gerontology, 1983 May. 38 (3) 344.8
    4. Developmental Landmarks for End of Life (from DyingWell.org)
    5. Flowchart: Continuing pain management in patients with cancer
      from The Agency for Health Care Policy and Research
    6. Karnofsky Performance Status Scale
    7. Adult Cancer Pain Guidelines from Nat'l Comprehensive Cancer Network
      (must register at NCCN website to access these materials for free)
    8. Cancer Pain Management from Nat'l Guideline Clearinghouse 2011 AHRQ
    9. Palliative Care Pain and Treatment Guidelines from Intl Assoc for Hospice & Palliative Care
    10. Management of Cancer Pain (Clinical Practice Guidelines)
      from AHCPR, from 1994, for reference purposes
    11. Palliative Care Resources & Tools from Intl Assoc for Hospice & Palliative Care
    12. Medical Guidelines for Determining Prognosis
      In Selected Non-Cancer Diseases
    13. Pain Assessment Tools from City of Hope.org
    14. Pain intensity scales
      from The Agency for Health Care Policy and Research
    15. Pain management strategies: a hierarchy
      from The Agency for Health Care Policy and Research
    16. Pain management plan
      from The Agency for Health Care Policy and Research
    17. Palliative Performance Scale
      from v.2 from Victoria Hospice
    18. Patient Interview
    19. Pharmacy Compounding for Hospice Patients
      from Secundem Artem, published by Paddock Laboratories
    20. Pharmacy Compounding for the Management of Pain
      from Secundem Artem, published by Paddock Laboratories
    21. Tools for Hospice Professionals (from Brown University)
    22. 2009 National Consensus Project for Quality Palliative Care (NCP) Clinical Practice Guidelines

  19. Clinging To the Original Hospice Mission
    1. Infections in the Terminally Ill
    2. Regular Medications in the Terminal Ill
    3. Standards of Clinical Practice
    4. Why We Need an Elder Justice Act
    5. Hospice Industry Shoots Itself in the Foot
    6. What is "Routine" Hospice Practice Today!


"Hospice care is there to make it possible
for people who are dying to live fully until they die."
   Dame Cicely Saunders
Foundress of the Hospice Movement







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. Want to help us help the dying and their families?
Donate now and support our charitable mission!. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation; your donations are fully tax-deductible.




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