University of Pennsylvania Cancer Center’s Oncolink (http://www.oncolink.com) or DrKoop.com (http://www.drkoop.com), do not offer interactive services, but instead provide the latest information and hyperlinks for cancer patients. A search for “end-of-life issues” on the Oncolink page, for example, led to on-line book reviews of palliative care handbooks, hospice information sites, video downloads with such titles as “Focus on the Final Months,” and numerous related articles and hyperlinks.
The biggest hurdle to effective use of the Web to educate patients and their family members about end-of-life issues is access. Surfing the Internet requires a computer, a modem, and a Web browser, which can be too expensive for some people. Also, the Web has its own distinct technique and language, which is less familiar to older people, who may be uncomfortable in cyberspace (though this will undoubtedly change with the aging of those growing up with access to cyberspace). In 1998, only about 15 percent of Americans using the Internet were older than 50 (Lewis, 1998). Yet this is currently the age group most likely to be diagnosed with cancer and to face difficult end-of-life issues. Still more vexing are the statistics showing most Internet users to be Caucasian and male, indicating that Web-based resources are not reaching entire groups of people—no matter what their wealth or age. Unless these racial, gender, and age-related barriers can be overcome, it may be inappropriate to allocate time and resources to developing Internet end-of-life tools at the expense of the further development of traditional materials. At the least, these Internet-based efforts must be complemented by outreach to populations underserved by the Web.
In addition to access, a major problem is the quality of the information—when and whether to trust the information one finds. The Internet does not provide an automatic check for financial or ideological self-interest. Since there are no restrictions or protections about what information is placed on-line, people can call themselves “experts” and post information, with impunity, that may be out-of-date, misleading, or just plain false. In fact, a recent study of medical HTML (hypertext markup language) pages concluded, “The bulk of information…is of low applicability and poor quality for answering clinical questions” (Hersh et al., 1998). This limitation is exacerbated by the currently fragmented state of end-of-life information on the Web. Materials on death and dying are scattered diffusely across many different sites purporting to help inform terminal cancer patients about their options. In this milieu, it is difficult for terminal cancer patients or their family members using Internet technology to decipher