tise themselves as extremely effective sources of patient education and information, the number of people who have access to these institutions is limited, both geographically and because most patients simply are not treated in cancer centers. Most of the centers are currently reluctant (or unable) to provide information to outsiders who are not patients at their institution.

Current deficiencies in communication between patients and their physicians about end-of-life issues have many other origins. Poor provider communication skills and knowledge of end-of-life issues, and a health care market that discourages referrals to hospice and rewards medical procedures and treatments over cognitive therapy, also can contribute to poor communication by health care providers.

End-of-Life Information from the World Wide Web

The Internet has emerged as a powerful influence in all information-gathering activities, and cancer and end-of-life information is no exception. The interactive nature of the World Wide Web allows people not only to access static sites, but also to communicate with counselors or support groups and watch or listen to audiovisual clips.

Nearly all of the cancer organizations that patients and their family members have traditionally contacted by phone or letter have now constructed Web pages to disseminate their resources. Exclusively Web-based sources of patient education and information have also emerged. A search for “end-of-life issues” leads to reviews of palliative care handbooks, hospice information sites, video downloads, and numerous articles and hyperlinks. NCI lists a number of links on its Web site, including major organizations and Web sites devoted to hospice.

The biggest hurdle to effective use of the Web is access. Surfing the Internet requires a computer, a modem, and a Web browser, as well as facility in navigating. A larger problem, in the long run, is the variable quality of information on the Internet, the accuracy of which is unregulated.

Lack of Reliable Data on Quality of Life and Quality of Care at the End of Life

There is sufficient information from recent studies to demonstrate that cancer patients are consistently undertreated for pain, are underdiagnosed for their psychological distress, and have significant economic barriers to getting palliative care and that health care professionals identify their lack of both knowledge and training, as well as ability to obtain effective services for their patients, as major barriers to providing adequate care. At the

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement