Cleft Palate Craniofac J. 2001 May; 38(3): 255-9.

Deficits versus strengths: ethics and implications for clinical practice and research.

Mouradian WE.

Craniofacial Center, Children's Hospital and Regional Medical Center, Seattle, Washington, USA. [email protected]

A shift in emphasis from deficits to strengths to promote health and well-being in patients with congenital and acquired craniofacial conditions (CFC) is appropriate given the chronic, "incurable" nature of CFC. Personal narratives are a valuable starting point for discovering sources of resilience. This paper explores such a shift by considering two areas of ethical concern suggested by patient narratives: informed consent and the physician-patient relationship. Both areas contain pitfalls and opportunities. The powerful emotions these patients bring with them argue for caution in medical decision making. Attention to the individual's psychosocial adjustment should always supplement surgical evaluations. Because of the inequality of the physician-patient relationship, care should be taken to use this power in positive ways. The relationship between patient and surgeon is particularly charged and may be an important source of support, information, hope, and advice for patients. The changing health care system threatens the physician-patient relationship, but the rise of alternative medicine suggests patients continue to value relationships. Relationships are critical for individuals with CFC, who experience social rejection because of the fundamental importance of face in human interactions. Future research directions should include long-term outcome studies on patients receiving modern craniofacial team care, qualitative research on resilience in patients with positive life adjustment, and development of a conceptual framework and research methodology for understanding quality of life of individuals with CFC. An emphasis upon strengths rather than defects will have implications for the structure of craniofacial teams, the care that is provided, and allocation of resources.