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)

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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 NC
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 NC
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 NC
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)

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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)

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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)

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Hospice

Carolinas Center for Hospice and End of Life Care NC
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 NC
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 NC
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)

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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 NC
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 NC
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 NC
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 NC
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)

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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)

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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)

 

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