Research shows that Americans are more likely to talk to their children about safe sex and drugs than to talk to their terminally ill parents about their preferences for end-of-life care. Nevertheless, experts agree that the time to discuss end-of-life care and the options available is before a life-threatening illness strikes.
There are many Internet resources available to help people explore care options, locate caregiving organizations, and record their wishes in ways that will be respected by medical professionals. Following are a few of the leading Web sites that offer guidance on navigating life's final stage:
Partnership for Caring
This information-packed site is the product of a national nonprofit organization that brings individuals and organizations together to improve how people die in our society. Among other services, Partnership for Caring operates the only national crisis and informational hotline dealing with end-of-life issues and provides state-specific living wills and medical powers of attorney. These state-specific documents are downloadable from the Web site, which also features a valuable resource guide. In particular, see the 'Toolkits' section, including a Checklist for Evaluating Quality of Care.
Growth House, Inc.
This site bills itself as 'the Internet's leading online community for end-of-life care.' It serves as a gateway to resources for life-threatening illness and end-of-life care. The site's best feature is an extensive resource directory that ranks different sites and provides direct links to them. Topic pages explain major issues and link you to "best of the net" resources around the world that meet the site's review standards.
National Hospice and Palliative Care Organization
The National Hospice and Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The site's best feature is its 'find a hospice program' search function. In addition, clicking on Hospice Care Information on the main page brings you to a valuable collection of tools, including 'Communicating Your End of Life Wishes,' 'How to Select a Hospice Program,' and 'The Medicare Hospice Benefit.'
Last Acts helps individuals and organizations pursue better ways to care for the dying. The group's main emphasis is on palliative care, which focuses on ways to ease pain and make life better for people who are dying and their loved ones. The site features a searchable resource directory and an electronic newsletter.
Completing a Life
This is the site for a soon-to-be-released CD-ROM aimed at helping patients and families learn about the practical, emotional, spiritual and medical issues faced by those dealing with advanced illness. The CD-ROM, which will be available by the end of September 2001, will address such areas as getting good pain relief, talking with health professionals, family communication, writing advance directives, and finding answers to spiritual questions.
On Our Own Terms
This is the site for the four-part PBS television series 'On Our Own Terms,' hosted by Bill Moyers. The site features excerpts from the series as well as an impressive array of end-of-life tools, including 'Dying: a Financial Guide' that offers details on applying for financial aid from the government.