Web Resources for End of Life Issues
Please note that these are just a few of the many online resources available. Use these as a starting point in your search for information.
Cremation
Internet Cremation
Society
an organization that screens cremation service providers throughout the
US and Canada to select just one per geographic region. Most serve the
entire state in which they operate and each has prices that are among
the lowest available in the area. Prices are listed and the opportunity
to visit the Home Pages of other cremation societies is available.
(3/2010)
End of Life
Aging
With Dignity
a nonprofit providing information to families to help ensure that your
wishes will be honored at the End of Life and to help improve quality
of care at the End of Life.
(3/2010)
Five
Wishes
a document drafted to help individuals express how they want to be treated
if they become seriously ill and unable to speak for themselves. It addresses
medical, personal, emotional and spiritual needs. It is written to be
understandable by families. It was developed through a grant by the Robert
Wood Johnson Foundation. A video of the Five Wishes is also available.
1-888-5-WISHES This document is not legally valid in all states so be
sure to check. It is valid in North Carolina and is available for $5.
There is also an online version available for viewing.
(3/2010)
Next
Steps
a companion guide to the Five Wishes document that provides information
about how to ensure your wishes are honored. It, too, is available for
$5.
(3/2010)
Beyond
Indigo
a site that provides comfort, support and education about issues
surrounding death "at a time when people are confused, apprehensive and dealing
with shock and sorrow." It is geared toward those who have lost
a loved one, are anticipating the loss of a loved one or who are facing
their own death in the near future.
(3/2010)
Caring Connections
a program of the National Hospice and Palliative
Care Organization (NHPCO),the site provides a wealth of information on
care at the end of life. It is supported by a grant from The Robert
Wood Johnson Foundation.
(3/2010)
Carolinas Center for Hospice and End of Life Care 
the combined agencies of Hospice for the Carolinas and the North Carolina
End of Life Care Coalition. The scope of the agency is to promote
issues of end of life care and hospice services.
(3/2010)
Duke
Institute on Care at the End of Life
a university-wide, interdisciplinary Institute based in the Divinity
School. The strategy is to conduct research, education and training related
to the care of the dying. It has a focus on understanding and implementing
ways of enhancing access to care, and the quality of care, for persons
at the end of life.
(3/2010)
Growth
House, Inc.
a gateway to resources for life-threatening illness and end of life care.
Their mission is to improve the quality of compassionate care for people
who are dying through public education and global professional collaboration.
(3/2010)
North
Carolina's Advanced Health Care Directive Registry
a part of the North Carolina Department of the Secretary of State where
you can find forms you may use for three (3) Advance Health Care Directives
and an Organ Donor Card. All of these may be either filled out online
and printed for notarization. Your choices can then be filed online with
the North Carolina Secretary of State, if you choose.
(3/2010)
United
States Living Will Registry
a free service
that stores advance directives online and makes them available directly
to health care providers by Fax. Only health care providers can access
the information. This site was developed by a doctor who had witnessed
the ordeal families must go through in making decisions about life
support and medical treatment. Organ donor registration is also available.
(3/2010)
Funerals
Funeral Consumer's
Alliance
a federation of nonprofit, nonsectarian consumer
information societies that monitors the funeral industry for consumers,
dedicated to protecting and ensuring a consumer’s right to
choose a meaningful, dignified, affordable funeral.
(3/2010)
Funerals:
A Consumers Guide
a site maintained by the Federal Trade Commission (FTC) related to the
Funeral Rule. The Funeral Rule requires that providers of funeral services
disclose various types of information to the consumer both by telephone
and/or in person to assist consumers in making informed choices so that
they do not buy services that are not needed or desired. Contact information
is also listed for the Funeral Service Consumer Assistance Program (1-800-662-7666)
which is a service designed to help people understand the funeral service
and related topics as well as helping them to resolve funeral service
concerns. The FTC also operates the Consumer Response Center (1-877-382-4357)
for handling complaints and they offer free publications.
(3/2010)
Grief
Caregivers Grieve Too!
a fact sheet discussing grief and how it affects caregivers.
(3/2010)
Families
and the Grief Process
a fact sheet discussing grief and how it affects families.
(3/2010)
GriefNet
a nonprofit online grief support community providing e-mail support groups
and other information operating under the name of Rivendell resources.
The site is supervised by a clinical grief psychologist, death educator,
and traumatologist. They provide a site for kids, individual support,
suicide prevention and survivor information, books and publications,
an online library, connections to other resources, and a Memorials
section.
(3/2010)
Hospice
Carolinas
Center for Hospice and End of Life Care
the combined agencies of Hospice for the Carolinas and the North Carolina
End of Life Care Coalition. The scope of the agency is to promote issues
of end of life care and hospice services.
(3/2010)
Duke
HomeCare and Hospice
dedicated to helping terminally ill patients and their caregivers face
the end stages of a terminal illness with dignity, compassion and comfort.
Duke Health Community Care encompasses four programs: Duke Hospice;
Duke Home Health Services; Duke Infusion Services
and Duke Bereavement Services.
(3/2010)
Hospice
Foundation of America
a nonprofit national organization that promotes hospice care and advocates
for hospice principles.
(3/2010)
Hospice of
Wake County
hospice service specifically for Wake County residents. Hospice care
is the provision of medical, nursing, and supportive services for terminally
ill patients and their families. A private nonprofit agency focusing
on quality hospice care for Wake County as well as Franklin, Orange,
Durham, Johnston, and Harnett Counties.
(3/2010)
National
Hospice and Palliative Care Organization
a nonprofit public organization dedicated exclusively to hospice care.
They are committed to improving End of Life care and expanding access
to hospice care. "Defined by the World Health Organization in 1990, palliative
care seeks to address not only physical pain, but also emotional, social,
and spiritual pain to achieve the best possible quality of life for patients
and their families. Palliative care extends the principles of hospice
care to a broader population that could benefit from receiving this type
of care earlier in their illness or disease process." The National Hospice
and Palliative Care Organization was founded in 1978 as the National
Hospice Organization and changed its name in February 2000. It has headquarters
in Alexandria, Virginia.
(3/2010)
Caring Connections
a program of the National Hospice and Palliative Care Organization (NHPCO),the site provides a wealth of information on care at the end of life. It is supported by a grant from The Robert Wood Johnson Foundation.
(3/2010)
Organ Donation
Association
of Organ Procurement Organizations
a member of the United Network for Organ Sharing; developed organizational
and ethical standards for Organ Procurement Organizations, offering a
voluntary accreditation program to its members. They provide technical
information to members and promote organ donation through education and
legislation.
(3/2010)
Carolina
Donor Services
a federally designated organ procurement organization serving most of
NC and part of Virginia.
(3/2010)
Donate Life America
a nonprofit alliance of national organizations and local coalitions dedicated
to the promotion of organ and tissue donation.
(3/2010)
Eye Bank Association
of America
a nonprofit organization of eye banks dedicated to the restoration of
sight through the promotion and advancement of eye banking. They are
the oldest transplant association in the United States and they are a
nationally recognized accrediting body for eye banks.
(3/2010)
Government
Organ Donor Website
a government website providing information and resources on organ donation
and transplantation issues. The site was developed by the Health Resources
and Services Administration and the Department of Health and Human Services.
(3/2010)
LifeNet Health
a nonprofit, federally-designated, organ procurement organization providing
donation systems for heart, liver, kidney, pancreas, lung, and other
organs for transplant. It is the largest nonprofit allograft Tissue
Banking System in the U.S.
(3/2010)
LifeShare
of the Carolinas
a nonprofit organ procurement organization designated by the federal
government to serve a 22 county area of southwestern North Carolina.
(3/2010)
NC Eye Bank
founded in 1951, through General Statute 90-216, and certified by the
Eye Bank Association of America, they act as a clearing house between
the persons needing corneal surgery and the persons who have willed
their eyes to be used for surgery or research after death in NC.
(3/2010)
North
Carolina Advance Health Care Directive Registry
offers the ability to register Advance Health Care Directives online;
a part of the NC Department of the Secretary of State.
(3/2010)
Organ Procurement and
Transplantation Network
a national transplant network established by the United States Congress
under the National Organ Transplant Act. It is a public-private partnership
that links all of the professionals involved in the donation and transplantation
system. It is dedicated to increasing the effectiveness and efficiency
of organ sharing and equity in the national system of organ allocation,
and to increase the supply of donated organs available for transplantation.
(3/2010)
The Gift
of a Lifetime
a website dedicated to sharing transplant stories in the first person.
A team of journalists spent two weeks in Philadelphia and Los Angeles
documenting the organ donor program in human terms to tell the story
from behind the scenes. The site offers these stories both in print and
in slide show with sound format.
(3/2010)
United Network
for Organ Sharing
a nonprofit, scientific and educational organization that administers
the nation's only Organ Procurement and Transplantation Network , established
by Congress.They assist transplant doctors, patients, and members of
the public by helping to ensure that organs are procured and distributed
in a fair and timely manner. They match donors to recipients and coordinate
the organ-sharing process nationwide.
(3/2010)
US
Advisory Committee on Organ Transplantation
was established to assist the US Health and Human Services Secretary
in enhancing organ donation, ensuring that the system of organ transplantation
is grounded in the best available medical science, assuring the public
that the system is as effective and equitable as possible, and thereby
increasing public confidence in the integrity and effectiveness of the
transplantation system.
(3/2010)
Spirituality
American
Association of Pastoral Counselors
founded in 1963 to represent and set professional standards for Pastoral
Counselors and pastoral counseling centers worldwide. Pastoral Counseling
is a "form of psychotherapy which uses spiritual resources as well as
psychological understanding for healing and growth". This type of counseling
is provided by certified counselors, who are mental health professionals
that have had in-depth religious and/or theological training. The association
is non-sectarian and expects members to respect the beliefs of the clients.
(3/2010)
Beliefnet
a multi-faith e-community designed to help people meet their religious
and spiritual needs. Beliefnet is a privately held company providing
"information, inspiration, community, stimulation, and products".
(3/2010)
Respite
and the Faith Community
a fact sheet discussing how the faith community can make a difference for caregivers.
(3/2010)
Terminal Illness
Compassion
and Choices
a nonprofit organization working to improve care and expand choice
at the end of life. Call 800-247-7421 to speak to a counselor (weekdays
from 9:00 a.m. to 5:00 p.m. Pacific Time). They will provide you
with information and assistance regarding difficult end-of-life decisions
and how to make them happen.
(3/2010)
Advanced Directive Toolkit for Your State
download information on advanced directives that will be legal and enforceable in your state.
(3/2010)
Death
with Dignity National Center
an organization that has helped implement a first-in-the-nation law
that allows terminally ill individuals, meeting stringent safeguards,
to hasten their own deaths. "DDNC works with leaders in other
states considering Oregon-style laws, as legislatures, medical communities
and the public come to understand the law's benefits as well as the
choice, control and comfort that the law affords."
(3/2010)
Dying
Well
a longtime palliative care physician and advocate for improved End
of Life care and a past president of the American Academy of Hospice
and Palliative Medicine, "provides written resources and referrals to organizations,
websites and books to empower persons with life threatening illness and
their families to live fully". This physician, Dr. Ira Byock, says, "I
think it is realistic to hope for a future in which nobody has to die
alone and nobody had to die with his pain untreated."
(3/2010)
