care, advanced directives, family planning, and the Patients’ Self-Determination Act. The booklet concludes with a list of supplementary resources and personal checklist and inventory sheets for the patient to use. The NCI publishes other booklets for some of the classic end-of-life concerns: Eating Hints for Cancer Patients (NCI, 1999, 60 pp.), Get Relief From Cancer Pain (NCI, 1994), Understanding Cancer Pain (NCI, 2000), and Pain Control (NCI, 2000, 57 pp.), published in conjunction with the ACS.
NCI also offers patients and their family members collections of photocopied pages—to be received by mail or at a fax machine—from NCI’s Physician Data Query (PDQ) database and its collection of “Cancer Facts” sheets about various types of cancers and aspects of disease. One section of the PDQ database deals with “Supportive Care Topics” and covers all eight of the Memorial Symptom Assessment Scale end-of-life-related symptoms. In addition, Cancer Facts information sheets exist about hospice care and national and local cancer support organizations.
Finally, the NCI oversees the Cancer Information Service (CIS), a group of 19 resource centers across the country that patients and/or their family members can reach either locally or by calling 1–800–4-CANCER. These centers are independent but can be associated with major cancer centers (e.g., the center in Buffalo is attached to the Roswell Park Cancer Institute). CIS telephone representatives mail patients NCI-produced booklets, PDQ printouts, or Cancer Facts sheets, as well as any other information deemed appropriate to the individual patient’s situation (e.g., chapters from textbooks, ACS resources).
In addition to distributing NCI material, the ACS offers its own booklets, including one directed at end-of-life care, called Caring for the Patient with Cancer at Home (ACS, 1998; 121 pp.). This booklet focuses on helping loved ones and patients themselves manage the symptoms associated with end-stage cancer. Other chapters explain the function and significance of health insurance, hospice care, and certain signs of approaching death. The book is written in simple language with one explanatory section for each topic, followed by points of what to do and what not to do. The ACS also offers source packs of information tailored for individual educational needs by counselors assigned to those who contact the ACS (either by calling 1–800-ACS-2345 or e-mailing ACS from its Web site). These packets can include chapters from its booklets, as well as more extensive notes on “Hospice Concept” and “Coping with Grief and Loss.”
Despite the NCI’s and ACS’ recent efforts, these organizations still inadequately address the range of terminal cancer patients’ end-of-life concerns. One significant issue is the sheer lack of resources devoted to a topic