An 86 year old veteran has end-stage heart failure and dementia.
The family of a 45 year old man, who is suffering from the last stage of ALS, struggles to bring him to his doctor for ongoing care.
A five year old child, diagnosed with cancer, has just a few months to live.
Every person has the right to die pain-free and with dignity. For those facing a life-limiting illness or injury, hospice and palliative care provide expert medical care, pain management, and emotional and spiritual support to both the patient and the family. The focus of hospice and palliative care is on caring, not curing. It is on living every moment to its fullest, not dying. In most cases, hospice care is given in the home.
According to the August 4, 2011 issue of the Federal Register, there are 3,552 hospices in the United States. 2,494 of these are in urban regions and 1,058 are in rural.
According to the Hospice Foundation of America, the word "hospice" comes from the Latin word "hospitium" which means guesthouse, and was originally used to describe a place of shelter for weary and sick travelers returning from religious pilgrimages. The hospice movement was created during the 1960's near London, used a team approach to professional caregiving, and provided pain management techniques to care for the terminally ill. The first hospice in the United States was established in New Haven, Connecticut in 1974.
Related Guides
Frequently Asked Questions
Tools
Assisted Senior Living
Web site
Helps seniors and caregivers locate adequate care and senior living facilities. Site includes options to search by state and type of facility.
Building a Hospital-Based Palliative Care Program
Web site
Outlines the five stages involved in starting and implementing a quality palliative care program.
Caring Connections
Web site
Provides caregiving resources, including individual state advanced directives. Brings together community, state, and national partners working to improve end-of-life care.
CMS Hospice Center
Web site
Provides information on regulations and related transmittals, enrollment and participation, and CMS Manuals relating to hospice services and benefits.
HospiceDirectory.org
Web site
Provides a searchable database to locate hospices in North America and the U.S. territories. Serves as a clearinghouse for consumers seeking information on choosing, paying for, and discussing hospice care. Offers an Ask the Expert service for questions on hospice care.
MedlinePlus: Hospice Care
Web site
Provides links to resources related to hospice, including research, news, specific conditions, articles, directories, and organizations.
National Family Caregiver Support Program (NFCSP)
Web site
Provides grants to States and Territories, based on their share of the population aged 70 and over, to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.
National Home and Hospice Care Survey
Web site
Presents results of 2007 National Home and Hospice Care Survey. Provides publications, fact sheets, methodology, and data. This will be replaced in 2012 when the National Center for Health Statistics will launch the new National Survey of Long-Term Care Providers (NSLTCP).
Promoting Excellence in End-of-Life Care
Web site
Dedicated to long-term changes to improve health care for dying people and their families. Targets special populations of patients including rural, Alaskan villages, and American Indian tribes.
Rural Health Research: Hospice and palliative care
Web site
Provides summaries of current and completed rural health research projects and related publications addressing the topic of hospice and palliative care, produced by the Office of Rural Health Policy's funded rural health research centers.
Rural Palliative Care Network
Web site
Part of Fletcher Allan Health Care, with the University of Vermont. Educates clinicians and community hospitals throughout Vermont and northern New York about palliative care. An interdisciplinary, patient and family-centered program. Delivers pain and symptom management, advanced care planning, and end-of-life care for people with life-threatening illness.
State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals
Web site
Provides a pull-down menu by state, searchable by hospital type. Includes public, sole, large, mid-size, and small hospital groups.
THRIVE Online
Web site
The Health and Resources Initiative for Veterans Everywhere (THRIVE) is designed to provide outreach and services to vulnerable and underserved veterans, including rural and homeless veterans. THRIVE online is a
collaboration between Stanford University and the VA Palo Alto Health Care System to provide videos of rural health experts, rural Veterans, and outreach workers, plus fact sheets, a searchable database, and articles on palliative care.
VA Office of Geriatrics and Extended Care Hospice & Palliative Care
Web site
Provides information for Veterans of all ages regarding geriatrics and extended care, also known as long term care.
Regulations, Forms & Other Useful Documents
America's Care of Serious Illness: A State-by-State Report Care on Access to Palliative Care in Our Nation's Hospitals
Author(s): R. Sean Morrison, Diane E. Meier
Sponsoring organization: Center to Advance Palliative Care
Examines variation in access to palliative care at the state level. Recognizes that development of quality palliative care programs in hospitals, is important, with special attention needed in small and rural hospitals.
Date: 05 / 2011
Code of Federal Regulations - Title 42, Part 418, Medicare Program: Hospice Wage Index for Fiscal Year 2012
Sponsoring organization: Centers for Medicare and Medicaid Services
Presents the final rule set forth for the hospice wage index for fiscal year 2012, effective 10-1-11. Revises the hospice requirement for face-to-face encounters, begins implementation of a hospice quality reporting program, and changes the hospice aggregate cap calculation methodology. Includes chart with number of total hospices, broken down by rural and urban, and region.
Date: 08 / 2011
Code of Federal Regulations - Title 42, Parts 409, 418, 424, 484, and 489, Medicare Program: Home Health Prospective Payment System Rate Update for Calendar Year 2011; Changes in Certification Requirements for Home Health Agencies and Hospices Final Rule
Sponsoring organization: National Hospice and Palliative Care Organization
Revises the home health agency (HHA) capitalization requirements. Sets forth an update to the Home Health Prospective Payment System (HH PPS) rates, including: the national standardized 60-day episode rates, the national per-visit rates, the non-routine medical supply (NRS) conversion factors, and the low utilization payment amount (LUPA) add-on payment amounts, under the Medicare prospective payment system for HHAs effective January 1, 2011.
Date: 11 / 2010
Comparison of Home Health and Hospice Care Agencies by Organizational Characteristics and Services Provided: United States, 2007
Author(s): Eunice Y. Park-Lee, Frederic H. Decker
Sponsoring organization: Centers for Disease Control and Prevention
Presents national estimates of the organizational characteristics of home health and hospice care agencies in 2007.
Journal citation: NACCHO Exchange
Date: 11 / 2010
Current Hospice Care Patients
Sponsoring organization: Centers for Disease Control and Prevention
Provides data regarding hospice patients throughout the United States. Table one reports by age, sex, race, and region.
Date: 02 / 2004
Depression in Rural Hospice Family Caregivers
Author(s): Christie Ladner, Norma G. Cuellar
Sponsoring organization: Rural Nurse Organization
Reports on a study designed to determine if informal, hospice, family caregivers in rural settings were depressed and if so, were the caregivers receiving treatment for depression, either by conventional or non-conventional interventions.
Journal citation: Online Journal of Rural Nursing and Health Care Volume 3 Issue 1
Date: 2003
End-of-Life Care: Key Components Provided by Programs in Four States
Sponsoring organization: Government Accountability Office
Describes six key components in providing care to Medicare beneficiaries at the end of life. Includes information from site visits to programs in Arizona, Florida, Oregon, and Wisconsin. Discusses challenges of providing end-of-life care services to rural residents.
Date: 12 / 2007
Estimate of Current Hospice and Palliative Medicine Physician Workforce Shortage
Author(s): Dale Lupu
Sponsoring organization: American Academy of Hospice and Palliative Medicine
Discusses the American Academy of Hospice and Palliative Medicine's Workforce Task Force. Discusses estimates of the current supply and current need for hospice and palliative medicine physicians. Determines whether a shortage exists and estimates size of shortage in full-time equivalents (FTEs) and individual physicians needed.
Journal citation: Journal of Pain and Symptom Management Volume 40 Issue 6 Pages: 899-911
Date: 12 / 2010
Ethics Conflicts in Rural Communities: End-of-Life Decision-Making
Author(s): Denise Niemira, Tom Townsend
Sponsoring organization: Board of Trustees of Dartmouth College
This eleventh chapter of "Handbook for Rural Health Care Ethics", describes how rural health care providers can establish procedures to help patients and their families prepare for the end-of-life process while reducing ethics conflicts.
Date: 2009
Home Health and Hospice Care Agencies: 2007 National Home and Hospice Care Survey Fact Sheet
Sponsoring organization: National Center for Health Statistics
Provides selected data highlights from the 2007 National Home and Hospice Care Survey (NHHCS), one in a continuing series of nationally representative sample surveys of U.S. home health and hospice care agencies.
Date: 2007
Hospice Facts and Statistics
Sponsoring organization: Hospice Association of America
Discusses Medicare-certified hospices, expenditures, funding mechanisms, Medicaid funding, and hospice.
Date: 11 / 2010
Hospice in Rural America
Author(s): Christy Whitney
Sponsoring organization: Hospice Foundation of America
Presents an audio recording of a February 3, 2011 webinar on hospice in rural America. Includes fact sheet, transcript, resources, and presentation slides.
Date: 02 / 2011
Hospice Payment System: Payment System Fact Sheet Series
Sponsoring organization: Centers for Medicare and Medicaid Services
Offers providers information about the Medicare hospice benefit. Discusses Medicare Part A, what is and what is not paid, certification requirements, election periods, how payment rates are set, and the 2011 hospice payment rates.
Date: 09 / 2010
Hospice-Veteran Partnership Toolkit
Sponsoring organization: U.S. Department of Veterans Affairs
Discusses HVPs (Hospice-Veteran Partnerships), which are statewide or community-based partnerships dedicated to increasing veterans' access to hospice and palliative care. Focuses on strengthening relationships between community hospices and VA providers and educating veterans and their caregivers about end-of-life care options.
Hospital-Hospice Partnerships in Palliative Care: Creating a Continuum of Service
Sponsoring organization: Center to Advance Palliative Care
Describes nine case studies of successful hospice-hospital partnerships in a range of health care settings, communities, and other regions of the country. Contains chapters on the regulatory and legal implications of hospital-hospice partnerships plus tested methods for delivering palliative care outside of the traditional Medicare Hospice Benefit.
Date: 12 / 2001
Medicare Benefit Policy Manual: Chapter 9 - Coverage of Hospice Services Under Hospital Insurance
Sponsoring organization: Centers for Medicare and Medicaid Services
Describes what hospice services are covered by Medicare under hospital insurance.
Date: 03 / 2011
Medicare Claims Processing Manual, Chapter 11: Processing Hospice Claims
Sponsoring organization: Centers for Medicare and Medicaid Services
Discusses the process of billing and payment for hospice services under Medicare.
Date: 04 / 2010
Medicare Hospice Benefits
Sponsoring organization: Centers for Medicare and Medicaid Services
Includes information on who is eligible for hospice care, what services are included, how to find a hospice program, and where to get information.
Date: 08 / 2011
Medicare Payment Basics: Hospice Services Payment System
Sponsoring organization: Medicare Payment Advisory Commission
Overview of Medicare payments for palliative care for beneficiaries who have a life expectancy of six months or less.
Date: 10 / 2011
Minnesota Rural Palliative Care Initiative: Final Report
Author(s): Janelle Shearer, Karla Weng, Lyn Ceronsky, Michelle, Hopkins, Deb McKinley, Jennifer Lundblad, Jane Pederson, Kate Peterson
Sponsoring organization: Stratis Health
Describes the Minnesota Rural Palliative Care Initiative (MRPCI), which assisted ten communities establish or strengthen palliative care services in rural Minnesota.
Date: 06 / 2011
Models for Providing Hospice Care in Rural Areas: Successes and Challenges
Author(s): Michelle M. Casey, Ira Moscovice, Beth Virnig, Sarah Kind
Sponsoring organization: University of Minnesota Rural Health Research Center
Describes how four different hospice models provide hospice care in rural areas, using a qualitative case study approach.
Date: 01 / 2003
National Health Statistics Report #33: Complementary and Alternative Therapies in Hospice: The National Home and Hospice Care Survey: United States, 2007
Author(s): Anita Bercovitz, Manisha Sengupta, Adrienne Jones, Lauren D. Harris-Kojetin
Sponsoring organization: Centers for Disease Control and Prevention
Presents national estimates on the provision and use of complementary and alternative therapies (CAT) in hospice.
Journal citation: NACCHO Exchange
Date: 01 / 2011
National Rural Health Association Technical Assistance Project Final Report: Rural Palliative Care Pilot Project
Author(s): Karla Weng, Jennifer Lundblad, Lyn Ceronsky
Sponsoring organization: Stratis Health
Discusses a pilot project involving three rural communities in Franklin, NC; Ruleville, MS; and Valley City, ND. The project involved identifying resources, needs, and opportunities in these communities for palliative care processes.
Date: 09 / 2009
NHPCO Facts and Figures: Hospice Care in America, 2011
Sponsoring organization: National Hospice and Palliative Care Organization
Provides an overview of trends in the growth, delivery, and quality of hospice care across the
America. Includes patient demographics.
Date: 01 / 2012
NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America
Author(s): Sarah Friebert
Sponsoring organization: National Hospice and Palliative Care Organization
Provides an overview of pediatric palliative and hospice care. Identifies children who may need these services. Mentions the need to address access for rural and/or immigrant families.
Date: 04 / 2009
Providing Hospice and Palliative Care in Rural and Frontier Areas
Sponsoring organization: Center to Advance Palliative Care
Toolkit of resources and information to help support the development of hospice and palliative care in rural and frontier areas. Includes information on finance, staffing, outreach, quality and more. Describes programs in Idaho, Kansas, New Mexico, North Dakota, and South Dakota.
Date: 10 / 2005
Providing Hospice Care in Rural Areas: Challenges and Strategies
Author(s): Michelle M. Casey, Ira Moscovice, Beth Virnig, Sarah Durham
Sponsoring organization: University of Minnesota Rural Health Research Center
Describes challenges that hospices face in serving rural communities. Provides results of
case studies of four different models of
hospice care in rural areas.
Journal citation: American Journal of Hospice & Palliative Medicine Volume 22 Issue 5 Pages: 363-368
Date: 10 / 2005
QAPI: A New Way to Manage Hospice Quality
Discusses the requirements, effective October 2008, by CMS as part of the proposed hospice conditions of participation (CoPs). The QAPI is located at 418.58 in the proposed hospice regulations.
Date: 2007
Redesign and Operation of the National Home and Hospice Care Survey, 2007
Author(s): Dwyer LL, Harris-Kojetin LD, Branden L, Shimizu IM
Sponsoring organization: National Center for Health Statistics
Provides an overview of the redesigned National Home and Hospice Care Survey (NHHCS) conducted in 2007. Provides descriptive information on home health and hospice agencies, their staffs, their services, and their patients.
Date: 07 / 2010
Rural Hospice: How Hospice Works
Sponsoring organization: Rural Assistance Center
Discusses how hospice works and the requirements to receive hospice care.
Journal citation: Rural Monitor Volume 2008 Issue Spring
Date: 05 / 2008
Rural Hospices Face Financial Challenges
Author(s): Candi Helseth
Sponsoring organization: Rural Assistance Center
Describes two hospice providers who have continued to grow by garnering strong community support despite the fact that rural hospices are economically vulnerable due to lower patient volumes and other factors.
Journal citation: Rural Monitor Volume 2008 Issue Spring
Date: 05 / 2008
Rural Hospices Use Team Approach to End-of Life Care
Author(s): Candi Helseth
Sponsoring organization: Rural Assistance Center
Discusses rural hospices and their success, which often utilizes a variety of program models and collaborates with other organizations in their communities.
Journal citation: Rural Monitor Volume 2008 Issue Spring
Date: 05 / 2008
Journals
American Journal of Hospice & Palliative Medicine
Offers health care providers and hospice administrators peer-reviewed, multidisciplinary information on the medical, administrative, and psychosocial aspects of hospice and palliative care. Individual articles and issues are available for purchase, or subscription is required to view full-text articles.
The Journal of Palliative Medicine
Covers medical, psychosocial, policy, and legal issues in end-of-life care. Presents information for professionals in hospice/palliative medicine, focusing on improving quality of life for patients and their families.
Organizations
American Academy of Hospice and Palliative Medicine (AAHPM)
National organization
Represents health care providers specializing in hospice and palliative medicine. Includes a special interest group on rural which addresses issues such as conditions and challenges common to rural hospices, regional and local variations, the role of the Medicare Hospice Benefit in rural hospice care, and the difficulties in staffing and funding rural programs.
American Association for HomeCare
National organization
Serves the medical needs of millions of Americans who require oxygen equipment and therapy, mobility assistive technologies, medical supplies, inhalation drug therapy, home infusion, and other home medical equipment, therapies, services, and supplies in the home.
American Association of Critical-Care Nurses (AACN)
National organization
Represents more than 500,000 nurses who are charged with the responsibility of caring for acutely and critically ill patients. Focuses on three advocacy initiatives: healthy work environments, palliative and end-of-life care, and staffing and workforce development.
American Cancer Society (ACS)
National organization
Provides information on cancer including statistics, publications, support, listing of local offices, hospice care, trials, and research programs.
ARCH National Respite Network and Resource Center
National organization
Assists and promotes the development of quality respite and crisis care programs. Helps families locate respite and crisis care services in their communities. Includes the National Respite Locator Program.
Center to Advance Palliative Care (CAPC)
National organization
Provides health care professionals with the tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. Dedicated to increasing the availability of quality palliative care services for people facing serious, complex illness.
Hospice Association of America (HAA)
National organization
Represents more than 2,800 hospices and thousands of caregivers and volunteers who serve terminally ill patients and their families. HAA is the largest lobbying group for hospice, advocating the industry's interests before Congress, the regulatory agencies, other national organizations, the courts, the media, and the public.
Hospice Foundation of America (HFA)
Nonprofit/Foundation
Provides end-of-life care resources for professionals, patients, and families. Includes a Hospice Information Center.
National Association for Home Care and Hospice (NAHC)
National organization
Represents the interests and concerns of home care agencies, hospices, and home care aide organizations. Provides listing of state associations.
National Family Caregivers Association (NFCA)
National organization
Supports and educates those who care for a chronically ill, aged, or disabled loved one.
National Hospice and Palliative Care Organization (NHPCO)
Nonprofit/Foundation
Represents hospice and palliative care programs and professionals in the United States. Committed to improving end of life care and expanding access to hospice care. Offers a hotline, 1-800-658-8898.
Visiting Nurse Associations of America (VNAA)
National organization
Serves as the official national association for not-for-profit, community based home health organizations. Created the profession of home health care more than 100 years ago. Works to bring compassionate, high-quality and cost-effective home care to individuals in their respective communities.
Terms & Acronyms
Advance Directive A written expression of a person's desire for medical treatment used in cases where the person becomes incapacitated and is no longer capable of making his or her own decisions. Examples include Living Wills and Durable Power of Attorney.
Hospice A special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.
Hospice Care Hospice/palliative care is provided to enhance the life of the dying person. Often provided in the home by health professionals, today there are many nursing facilities and acute care settings that also offer hospice services. Hospice care, typically offered in the last six months of life, emphasizes comfort measures and counseling to provide social, spiritual and physical support to the dying patient and his or her family.
Medicare Part A (Hospital Insurance Program) Hospital insurance that helps pay for inpatient hospital care, limited skilled nursing care, hospice care, and some home health care. Most people get Medicare Part A automatically when they turn 65.
Palliative Care Care given to improve the quality of life of patients who have a serious or life-threatening disease. Also called comfort care, supportive care, and symptom management. This care can be given at the same time a patient receives treatment for a medical condition.
Tertiary Care Specialized consultative care, usually on referral from primary or secondary medical care personnel, by specialists working in a center that has personnel and facilities for special investigation and treatment.
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