Ethical perspectives on meeting the needs of women with obstetric fistula deemed incurable in low resource settings

This presentation discusses ethical perspectives on meeting the needs of women with obstetric fistula deemed incurable, and recommendations of an expert consultation on this issue co-hosted by EngenderHealth's Fistula Care project and Harvard Humanitarian Initiative in September 2011. The objective was to assist Ministries of Health, professional associations and other institutions to develop guidelines on evidence- and rights-based minimum global standards of care.

Obstetric fistula remains largely invisible to national and global policymakers as a significant cause of reproductive morbidity resulting from inequitable access to emergency obstetric care. No standardized guidelines exist for the care and management of this neglected group.

Women with this condition are generally extremely poor and often illiterate. Many are profoundly depressed or suicidal. Those labeled ‘incurable' are the most desperate. Having frequently endured several unsuccessful painful surgeries, they may end up ostracized by their community and destitute.

This presentation provides an overview of the ethical issues involved in meeting the needs of these women, and describes the major obstacles confronted by practitioners and policymakers, including (1) defining ‘incurability' in contexts where lack of resources limit therapeutic and palliative options; (2) ensuring informed and voluntary consent for complex surgeries across language and cultural barriers; and (3) the clinician's predicament, balancing pressure to intervene against the fundamental dictum of ‘non nocere'. It concludes by describing recommendations emerging from the meeting, which advocate that, though vulnerable, these women are individuals with the right to make informed decisions about their care that might differ from those of the clinician.