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You may also want to see these guides on related topics: Home
Health, Informal
Caregiving, Long-Term Care
Introduction
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.
In the publication, Providing Hospice and Palliative Care in Rural and Frontier Areas, by the National Rural Health Association, 39% of America's hospices define themselves as rural and 40% serve both rural and urban areas. The number of palliative care programs serving rural areas is increasing. However, hospice and palliative care access for all rural and frontier areas has yet to be achieved.
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.
Frequently Asked Questions
Tools
Assisted Senior Living
Web site
Strives to help seniors and caregivers locate adequate care and senior living facilities. Site includes options to search by state and type of facility and provides resources for gathering more information on this topic.
Building a Hospital-Based Palliative Care Program
Web site
Outlines the five stages involved in starting and implementing a quality palliative care program.
Caregiver.com
Web site
Provides information, support and guidance for family and professional caregivers. Includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, chat rooms and an online store.
Caregiving Resources
Web site
Contains a host of caregiving information including organizations, website, hospice, advocacy, prescription assistance, respite resources, training for caregivers, and volunteer agencies.
Caring Connections
Web site
Provides free resources, information, and listing of state advanced directives to help people make decisions about end-of-life care and services before a crisis. Helps people connect with the resources they need, when they need them. Brings together community, state and national partners working to improve end-of-life care. Spearheads a national consumer engagement campaign called "It's About How You LIVE."
Five Wishes
Print publication
Helps people express how they want to be treated if they are seriously ill and unable to speak for themselves. Covers a range of a person's needs: medical, personal, emotional and spiritual. See website for ordering information.
Get Palliative Care
Web site
Provides information for patients and families coping with serious, complex illness. Includes a palliative care Provider Directory, a definition and detailed description of what palliative care is, direct links to palliative care-related organizations and more.
Hospice Care
Web site
Provides information on hospice including who pays for hospice care, questions to ask, and finding hospice care.
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 hospice, paying for hospice, discussing hospice and more.
MedlinePlus: Hospice Care
Web site
Provides links to resources related to hospice. Includes organizations, statistics, and publications.
National Family Caregiver Support Program (NFCSP)
Web site
Provides families, caregivers, and health care professionals with information on where support and assistance can be sought and on providing services to caregivers.
National Home and Hospice Care Data
Web site
Provides results of National Home and Hospice Care Survey. Provides hospice care definitions of terms relating to agencies, patients, and discharges.
National Respite Locator Service
Database
Helps parents, professionals, and caregivers locate respite services. Search for respite care providers by state, age and condition.
Palliative Care Leadership Centers (PCLC)
Web site
Offers, for a fee, training and mentoring programs for starting various types of palliative care centers.
Palliative Care Tools
Web site
Critical care, evaluation, educational, and organizational tools developed or adapted by Promoting Excellence in End-of-Life Care demonstration projects and national workgroups.
Promoting Excellence in End-of-Life Care
Web site
Dedicated to long-term changes to improve health care for dying people and their families.
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.
VA Office of Geriatrics and Extended Care Hospice & Palliative Care
Web site
Provides information on obtaining services, various programs, and links to resources.
Regulations, Forms & Other Useful Documents
America's Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals
Sponsoring organization: Center to Advance Palliative Care
Ranks access to hospital palliative care programs by state, hospital size and other characteristics, and recommends actions to increase access to hospital palliative care for patients with serious illness.
Date: 09 / 2008
Caring for the Caregiver: Support for Cancer Caregivers
Sponsoring organization: National Cancer Institute
Provides the basics of practical and supportive information for cancer caregivers.
Date: 2007
Case for Hospital-Based Palliative Care
Sponsoring organization: Center to Advance Palliative Care
Details how leading hospitals are starting palliative care programs to deliver the high-quality care that seriously ill patients want while increasing staff, patient and family satisfaction, improving staff retention, and promoting responsible use of hospital resources.
Date: 2005
Current Hospice Care Patients
Sponsoring organization: Centers for Disease Control and Prevention
Provides data regarding hospice patients throughout the United States.
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
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
Hospice Facts and Statistics
Sponsoring organization: Hospice Association of America
Discusses Medicare-certified hospices, expenditures, funding mechanisms, Medicaid funding, and hospice.
Date: 03 / 2006
Hospice Patients' Bill of Rights
Sponsoring organization: Hospice Association of America
Lists the hospice patient's rights including dignity and respect, decision making, privacy, financial, and quality of care.
Hospice-Veteran Partnership Toolkit
Sponsoring organization: U.S. Department of Veterans Affairs
Discusses HVP's, 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.
Date: 2006
Hospital-Hospice Partnerships in Palliative Care: Creating a Continuum of Service
Sponsoring organization: Center to Advance Palliative Care
Describes nine different 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 as well as 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: 12 / 2004
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: 07 / 2006
Medicare Hospice Benefits: A Special Way of Caring for People Who Have a Terminal Illness
Sponsoring organization: Centers for Medicare and Medicaid Services
Provides information on the Medicare hospice program and who is eligible, Medicare hospice benefits, how to find a hospice program, and where you can get more help.
Date: 07 / 2005
Medicare Learning System Payment System Fact Sheet Series: Hospice Payment System
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 2007 hospice payment rates.
Date: 11 / 2006
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 / 2008
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
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. (website temporarily unavailable)
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
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
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
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
Date: 05 / 2008
Use of the Hospice Benefit by Rural Medicare Beneficiaries
Author(s): Beth Virnig, Ira Moscovice, Sara Kind, Michelle Casey
Sponsoring organization: University of Minnesota Rural Health Research Center
Identifies urban-rural differences in hospice use in rural service areas.
Date: 08 / 2002
Journals
American Journal of Hospice & Palliative Medicine
Offers physicians, nurses, psychologists, psychiatrists, pastoral care professionals, hospice administrators, and related health care professionals 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.
Organizations
American Academy of Hospice and Palliative Medicine (AAHPM)
National organization
Consists of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy.
American Association for HomeCare (AAHomecare)
National organization
Works to strengthen access to healthcare in the homes of millions of Americans. Represents every line of service in the homecare community, including home health and home medical equipment providers, respiratory and infusion therapy, telemedicine, telehealth, rehab and assistive technology, and hospice.
American Board of Hospice and Palliative Medicine (ABHPM)
National organization
Establishes and implements standards for the certification of physicians practicing hospice and palliative medicine. Creates and administers the certifying examination, works to implement high standards for training, and contributes to setting the standards for excellence in palliative medicine.
American Cancer Society (ACS)
National organization
Provides information on cancer including statistics, publications, support, listing of local offices, trials, and research programs.
Americans for Better Care of Dying (ABCD)
Nonprofit/Foundation
Focuses on fundamental reforms; such as, improved pain management, better financial reimbursement systems, enhanced continuity of care, support for family caregivers, and changes in public policy.
CancerCare
National organization
Provides free, professional support services to anyone affected by cancer, regardless of age. Also offers support for healthcare professionals in the form of educational materials for patients, distance learning programs, and professional consultation.
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
Exists to help those who cope personally or professionally with terminal illness, death, and the process of grief and bereavement.
Hospice Net
Nonprofit/Foundation
Works exclusively through the Internet. Provides hospice-related information for patients, children, and caregivers. Contains articles regarding end-of-life issues and is dedicated to providing information and support to patients facing life-threatening illnesses and to their families and friends.
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. Works to make home care and hospice providers lives easier.
National Family Caregivers Association (NFCA)
National organization
Works to support, empower, and educate those who care for a chronically ill, aged, or disabled loved one. Provides guides and information for congregations and parishes on informal caregiving.
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 with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
Provides a hotline, 1-800-658-8898, for those looking for end-of-life information, including free brochures and advance directives or contact information for a hospice or other end-of-life organization.
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 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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