However, a guideline has no impact on health care unless providers endorse and use it. Directly involving physicians in the development of guidelines, holding them accountable through peer pressure, monitoring their compliance, and providing feedback about performance and potential positive effects on outcome are critical to their being used (Katterhagen, 1996). An important corollary, endorsed by the National Comprehensive Cancer Network (NCCN), which has developed guidelines for all cancer sites and many symptoms, is the importance of regular review to update and revise guidelines to reflect new information that impacts on practice. Since much depends on the human element of physician “buy-in,” ways to ensure cooperation, dissemination, implementation at the clinical level, and accountability for applying them will continue as important research questions (Grimshaw and Russell, 1993).
Ensuring full application of practice guidelines poses special challenges when applied to end-of-life care. Comfort care is affected by a range of cultural factors: the customs and ethnicity of the patients and their families; community norms and expectations; religious and philosophical belief systems. Physicians’ personal attitudes and beliefs about death also affect their interest and participation in end-of-life care. Development and evaluation of clinical practice guidelines for end-of-life care must take into account the unique aspects of treatment during this period. The task becomes daunting, given the recognized problems with implementation of clinical practice guidelines for pain management and the complexity of developing guidelines that direct both medical and psychological care. The majority of existing clinical practice guidelines in cancer are directed toward the management of specific cancer types and stages of disease. Most have been developed through the American Society of Clinical Oncology (ASCO), NCCN (McGivney, 1998), the American College of Surgeons (ACoS), and the Agency for Health Care Research and Quality (AHRQ, formerly the Agency for Health Care Policy and Research) (Table 7-1; Smith and Hillner, 1998). AHRQ also has developed an Internet-based clearinghouse for all practice guidelines meeting certain criteria.
The World Health Organization (WHO, 1996, 1998) defined end-of-life care as “the active, total care of patients whose disease is not responsive to curative treatment.” The focus at this point is to attain maximal quality of life through control of physical and psychological, social, and spiritual distress of the patient and family. Hospice philosophy has long supported this integrated approach, as well as giving attention to the caregiver. The wide range of these issues makes the task of developing clinical practice guidelines more formidable but, at the same time, more critical. The 1997