separation of their cancer information books into books about the disease and its treatment and those about death and palliative care. By separating cancer care in the eyes of patients into treating the disease, on one hand, and dying from it, on the other, these documents can subvert the notion of continuity of care—quality treatment by trained professionals from diagnosis to conclusion, no matter what that outcome may be. Any model of care should include all potential outcomes of their disease, so that patients understand they will not be abandoned if their curative treatment is unsuccessful, and this should be emphasized in the literature they read.

Finally, materials produced by NCI, ACS, and other organizations about end-of-life care are useful only if they find their way into the hands of patients and their families. Of the 235,000 calls that NCI’s CIS received in 1998 from patients and their family or friends, only 6,065 (2.5 percent) of these concerned metastatic cancer and only 798 callers (0.34 percent) callers specifically inquired about hospice (Thomsen, 1999). Moreover, it appears that patients facing death or disability may not receive palliative care and end-of-life materials unless they explicitly ask for them. A caller contacted both the NCI and the ACS hotlines to acquire information on treatment options and expectations on behalf of an 85-year-old family member just diagnosed with inoperable non-small cell lung cancer. Neither organization sent its designated palliative care or end-of-life materials. A subsequent call was made regarding a 78-year-old family member with inoperable non-small cell lung cancer, whose disease was “progressing” after three months of chemotherapy and radiation and who was experiencing a lot of pain. A similar information request was made. Although the organizations now sent their resources on pain management, neither organization sent its specific end-of-life materials. Both of these situations present strong indications that death may be approaching and certainly suggest the possibility of treatment with palliative intent. Yet, in these instances, NCI and ACS cancer specialists are put in a difficult and delicate situation because they cannot determine how callers who do not explicitly ask for end-of-life care materials will respond to being sent such information unsolicited. Still, the end result is that necessary information is not communicated.

Future Directions

The NCI and ACS are currently working to improve their end-of-life materials; the NCI is revising Advanced Cancer (Ades, 1999; Crosson, 1999). However, these organizations could spearhead a more comprehensive evaluation of their extant materials, analyzing the amount and quality of information relayed to patients, as well as the more sweeping notions of symbolic language and continuity of care. The results should be incorporated into a list of specific concerns and recommendations regarding 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