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1. Consumer Advocacy:
   Hospice Patients Alliance Mission Statement
   1. March 13, 2000 Letter to the Public
   2. A letter from the Executive Director
   
   
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
   
   
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, & quality of life issues
   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.
   
   
   
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. Using the Freedom of Information Act
      (to Check Up On A Hospice's Record)
   4. 10 Essential Traits of Real Patient Advocacy Organizations
   5. Granny Cams to Monitor Hospice Services Provided in Your Home
   
   
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. Federal Law on Hospice: Code of Federal Regulations
       3. HCFA State Operations Manual Section 2080 (important standards which hospices must fulfill)
       4. CMS Hospice Reimbursement Rates and Cap
          (How and how much hospices are paid)
       5. State and Federal Surveyor Procedures Guidelines
          (What the Inspectors look for ... in detail)

          This is the 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://cms.hhs.gov/medicaid/hospice/som-ap-m.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.

       6. Information on Hospice Cost Reporting
       7. Controlled Substances Act
          This is the law that regulates the use, distribution and prescription of narcotics and other controlled substances.
       8. Soc. Sec. Act Def. of Hospice
          
       9. Hospice Data - FY 1991 through FY 2001
          
    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
    1. To Order the book:
       The Hospice Patients Alliance Family Guide To Hospice Care
       (What No Hospice Will Tell You!)
    
    
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
       by Mark Gaines M.S. B.S.N. RN RRT EMT-B
    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?
    
    
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. Management of Cancer Pain (Clinical Practice Guidelines)
       from AHCPR, from 1994 and soon to be updated.
       (used by most hospices as basic knowledge)
       
    8. Medical Guidelines for Determining Prognosis
       In Selected Non-Cancer Diseases
    9. Pain Assessment Tools from City of Hope.org
    10. Pain intensity scales
        from The Agency for Health Care Policy and Research
        
    11. Pain management strategies: a hierarchy
        from The Agency for Health Care Policy and Research
        
    12. Pain management plan
        from The Agency for Health Care Policy and Research
        
    13. Palliative Performance Scale
        from v.2 from Victoria Hospice
        
    14. Patient Interview
        
    15. Pharmacy Compounding for Hospice Patients
        from Secundem Artem, published by Paddock Laboratories
        
    16. Pharmacy Compounding for the Management of Pain
        from Secundem Artem, published by Paddock Laboratories
        
    17. Tools for Hospice Professionals (from Brown University)
        
        
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."

All material copyright of Hospice Patients Alliance ("HPA") unless otherwise credited.