Institute of Medicine (IOM) report Approaching Death stated that ensuring quality of care requires that recommendations be made by experienced professionals; that clear goals of care are established; that patients have access to clinical trials, if desired; that a patient receives the available services in a coordinated manner; that the patient is told and understands the treatment options; that there is available an appropriate range of psychosocial services; that the care be given in a compassionate way; and that the care integrates the physical and psychosocial elements.

The need for guidelines has also been acknowledged by policy analysts, health care professionals, patients, families and third-party payers, and work is progressing toward developing them (see Table 7-2). The ASCO Task Force on Cancer Care at the End of Life set out a basic principle for end-of-life care of “optimizing quality of life…with attention to the myriad physical, spiritual and psychosocial needs of the patient and family” (ASCO, 1998). An NCCN panel has begun adapting general guidelines for nausea and vomiting and for pain control for end-of-life care (Dr. Michael Levy, personal communication). Several large institutions, including Memorial Sloan-Kettering Cancer Center, have developed guidelines for end-of-life care. Development of algorithm-based clinical practice guidelines relating to psychiatric, psychosocial, and spiritual domains has the potential to enhance end-of-life care in a major way by defining a gold standard for clinicians in an area not previously subjected to this level of scrutiny.

This chapter outlines the status of clinical practice guidelines that relate to end-of-life care and suggests next steps for policy development.

The areas reviewed in this chapter are:

  • communication with patient and family;

  • management of distress (psychiatric, psychological, social, existential, spiritual) in the patient and family; and

  • management of several physical symptoms that are common at the end of life: pain, fatigue, nausea and vomiting, dyspnea.

A key concept for end-of-life care guidelines is the recognition that the physical and the psychosocial, existential, and spiritual concerns are interrelated and overlapping, so it is critical that the patient experience appropriate attention to both (Twycross and Lichter, 1998; Wanzer et al., 1989).

Communication with Patient and Family

Central to ensuring quality of all care at the end of life is communication between the doctor, patient, and family (Girgis and Sanson-Fisher, 1995; Ptacek and Eberhardt, 1996). Identification and management of symptoms—physical and psychological—hinge upon this interaction. Buck-

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