Studies are needed to provide more evidence-based (as opposed to consensus) guidelines for recognition and management of distress. Empirical studies should explore the best psychotherapeutic approaches; the efficacy of psychopharmacologic interventions through clinical trials (use of neuroleptics, antidepressants, anxiolytics, and psychostimulants in end-of-life care); studies of depression, its predictors, and those associated with requests for physician-assisted suicide; and development of special algorithms for medically underserved populations (e.g., non-English speaking, low income, minorities, chronically mentally ill), with attention to quality-of-life assessment that permits examining patients’ quality of life and satisfaction with care. In addition, family members who care for their loved ones during the end of life should be studied to better understand anticipatory grief, distress, the burden of caregiving, and the management of bereavement.
A multidisciplinary consensus panel (including all disciplines that provide supportive services) should be impaneled to develop an overall taxonomy for the nonphysical domains of patients at the end of life (i.e., the psychological, social, spiritual, existential, religious, and psychiatric dimensions). This area currently suffers from the use of vague, overlapping terms that lack clarity and definition, and is likely to be relegated to a nonsignificant status. The encompassing term “distress” is proposed to incorporate all psychosocial facets to diminish this fragmentation. A consensus panel of experts is needed to promulgate a standard taxonomy (Holland, 1999).
The panel should take existing standards of care and clinical practice guidelines developed by NCCN for use with ambulatory cancer patients and modify them for use at end of life. These should be disseminated and tested for feasibility. Given the problems with ensuring implementation of clinical practice guidelines, substantial efforts must be invested in identifying and overcoming barriers to their widespread use.
The panel should also examine the NCCN panel’s work on guidelines for communication and adapt them to end-of-life care. A current NCCN panel has such work in progress (W.Breitbart, personal communication).
The panel should address the major barriers to management of distress as discussed earlier:
the absence of minimum standards for psychological and social care and for existential, spiritual, and religious needs;
the absence of oversight by regulatory bodies regarding the perfor-