For your convenience, we have provided a number of
links to valuable services, resources and helpful information.
Information and legal advance directive instruments for all states are available at:
www.caringinfo.org/.
Hospice Association of America
228 7th Street SE
Washington D.C. 20003-5809
Phone: 202-546-4759
An
affiliate of the National Association for Home Care with consumer information
about how to select a hospice program.
http://www.nahc.org/
National Hospice & Palliative Care Organization
1731 King Street. Suite 100
Arlington, VA 22314
Phone: 703-837-1500
Fax: 703-837-1233
National
non-profit organization devoted exclusively to hospice. For lists of
hospices by county and general information about hospice.
http://www.nhpco.org/
Massachusetts Health Care Decisions
P.O. Box 417
Sharon, MA 02067
Non-profit
organization that provides public and professional education on ethical
issues in health care, including those at end of life.
Aging
With Dignity
Purchasing directions for "Five Wishes,"
a simple document to put your "wishes" in writing should you
become seriously ill and unable to speak for yourself.
Telephone: 850-681-2010
www.agingwithdignity.org
Caregiving
Web Site
Information about health and wellness of the family caregiver, bill management, home care help, community support,
free messaging.
www.caregiving.com
End-of-Life:
Exploring Death in America
A series from National Public Radio including
reference lists, broadcast transcripts, and Real Audio clips.
www.npr.org
Growth
House: Guide to Death, Dying, Grief, Bereavement, and End-of-Life Resources
An award-winning gateway to resources for life-threatening
illness and end-of-life issues.
www.growthhouse.org
Hospice
Foundation of America
Resources, hospice locator guide, education opportunities,
and general hospice information.
Telephone: 305-538-9272
www.hospicefoundation.org
Innovations
in End-of-Life Care
An international, online journal, committed to
more humane, comprehensive, and coordinated care for dying persons and
their families.
Telephone: 617-618-2185
www.edc.org/lastacts
Massachusetts
Commission on End of Life Care
A comprehensive resource guide and directory of end-of-life care resources and services available throughout Massachusetts.
www.endoflifecommission.org
Massachusetts
Compassionate Care Coalition
A coalition of individuals and organization who
seek to improve end-of-life care in Massachusetts.
Telephone: 617-964-1196
www.massccc.org
Massachusetts
Medical Society
A professional membership organization providing
a web site on health care proxy, advance directives, discussion guides,
and links to other resources.
www.healthcareproxy.org
US
Living Will Registry
The Registry electronically stores advance directives
and makes them available directly to hospitals across the country through
an automated system. This storage service is free and confidential.
www.uslivingwillregistry.com
Epidemiology of Dying & End-of-Life Experience
An online, searchable catalogue of data about care at the end of life. It was developed by The Carolinas Center for Hospice and End of Life Care and The National Hospice and Palliative Care Organization (NHPCO.) The website provides links to public data on decedents, cause of death and experience of end of life. The value-added of EDELE is that the time-consuming Internet research has been done by EDELE researchers. Users can search by topic, state, or a set of pre-written questions. Each search returns a list of websites that display data matching the search parameters, plus information about the data such as format, frequency of update, source, etc. From the search results list, users go directly to tabular, graphic or narrative data.
http://www.edeledata.org
Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, by Hank Dunn, A & A Publishers, Inc. 4 th Edition, 2001
A resource for professionals, patients and their families regarding end-of-life decisions
http://www.hardchoices.com/
Hospice and Palliative Nurses Association
A nursing organization of over 9,200 members dedicated to promoting excellence in End-of-Life nursing
http://www.hpna.org
Massachusetts Bereavement Services
www.bereavementservicesma.org
• Statewide website for current bereavement information -- support groups, memorial services, general info
• Listings easily accessible by geographical area
• Information posted by Massachusetts bereavement professionals
• Site available to professionals and bereaved individuals
• For further information or help using the site, contact alex.rose@aseracare.com
Terminal Illness
http://www.terminalillness.co.uk
A public interest website focused on coping with a terminal illness as a sufferer, relative or friend
Medicare and Medicaid Hospice Conditions of Participation, Final Rule, June 5, 2008
http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf
End of Life Palliative Educational Resource Center
http://www.eperc.mcw.edu/index.htm
This site is intended to support individuals involved in the design, implementation, and/or evaluation of End-of-Life/Palliative education for physicians, nurses and other health care professionals. More specifically, the site has been designed for use by medical school course/clerkship directors, residency and continuing education program directors, medical faculty, community preceptors, or other professionals who are (or will be) involved in providing EOL instruction to health care professionals in training.
Education on Palliative and End of Life Care
http://www.epec.net/EPEC/Webpages/index.cfm
"Our mission is to educate all healthcare professionals on the essential clinical competencies in palliative care."
State Operations Manual Appendix M - Guidance to Surveyors: Hospice (Rev.)
http://www.cms.hhs.gov/SurveyCertificationGenInfo/downloads/SCLetter09-19.pdf
MassHealth Companion Guide: Health-Care Claim Institutional
http://www.mass.gov/Eeohhs2/docs/masshealth/provlibrary/837i_newmmis-cg.pdf
The Hospice Education Network (HEN)
http://www.hospiceonline.com
Offers an e-learning course that is appropriate for your hospice staff's ongoing education that they can access twenty four hours a day, at home or in the office.
PalliativeDoctors.org
http://
www.PalliativeDoctors.org
Consumer Web site that explains the specialty of hospice and palliative medicine and its benefits to patients and families.
Pallipedia
http://www.pallipedia.org
A free online palliative care dictionary to be built by the international community, under the auspices of IAHPC.
Massachusetts Department of Public Health's Patient Protection Line
800-462-5540
You have the right to register a complaint with any hospice provider. If your complaint is not resolved by your hospice team, or if you feel uncomfortable discussing it with them, you should contact the administrator of your hospice. In the rare event that your complaint remains unresolved, you may contact the Hospice & Palliative Care Federation of Massachusetts or the Department of Public Health's Patient Protection Line.
MA MOLST Demonstration Program
http://www.mass.gov/Eeohhs2/docs/dph/quality/hcq_circular_letters/dhcq_1002529.pdf
Office of the Inspector General IG Compliance Program, Guidance for Hospices
http://oig.hhs.gov/authorities/docs/hospicx.pdf
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