consensus development procedures—are essential in evaluating scientific evidence and in recommending courses of action in the absence of evidence. Credible and practical guidelines and protocols for palliative, end-of-life, and bereavement care should also consider the experience and perspectives of patients (when possible), family representatives, and others regularly involved in caring for patients who have fatal or potentially fatal medical conditions.

Even when methodologically sound national guidelines are available, roles also exist for local review and adaptation of such guidelines. One justification for local review and adaptation is to increase the sensitivity of care processes and procedures to specific institutional and community characteristics, including the institution’s mission and priorities, the population it serves, the institution’s financial and other resources, the community’s resources and expectations, and state laws and regulations. Another justification is that the practical process of adapting protocols to local circumstances should promote a greater sense of local ownership and commitment to the protocols and the goals they are intended to serve. When local groups modify national guidelines, they should approach the task systematically and explain the reasons for any departures from these guidelines.

Comprehensive protocols to cover patient transfers and other events that cross institutional boundaries may require interorganizational or community-wide cooperation or agreements. Oregon provides one example of such cooperation. As part of more than a decade’s work to improve end-of-life care in the state, a statewide task force has developed, implemented, and evaluated Physician Orders for Life-Sustaining Treatment (POLST)2 as a tool to help patients have their wishes honored regardless of the site of care. This initiative has shown evidence of success (Tolle et al., 1998; Lee et al., 2000; Tolle and Tilden, 2002; see also http://www.lastacts.org/files/publications/polst0599.html).

In a few areas, interventions and care protocols are reasonably well defined and, in some cases, tested. For example, evidence-based guidelines for management of different kinds of pain, including cancer pain in children, have been developed and undergone several years of testing in the United States and elsewhere (see, e.g., AHCPR, 1994; Foley, 1994; Bookbinder et al., 1996; WHO, 1998; Du Pen et al., 1999). In addition, expectations for pain management are now articulated in accreditation standards

2  

The orders are presented in a bright pink document that is to be attached to the front of a patient’s medical record in a hospital or nursing home. Oregon also has changed the scope of practice for emergency medical responders so that they can honor POLST provisions. In addition, the state has revised its advance directive statute and, in general, made comfort care a priority for dying patients (Tolle and Tilden, 2002).



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