Background Midwives and nurses appear vulnerable to moral distress when caring for women whose babies are removed at birth. They may experience professional dissatisfaction and their relationships with women, families and colleagues may be compromised. The impact of moral distress may manifest as anger, guilt, frustration, anxiety and a desire to give up their profession. While there has been much attention exploring the concept of moral distress in midwifery, this is the first study to explore its association in this context. (...) Aim This article explores midwives’ experiences of moral distress when providing care to women whose babies were removed at birth and gives valuable insight into an issue nurses and midwives encounter in their profession. Methods Four mothers and eight midwives took part in this research. Narrative inquiry incorporating photo-elicitation techniques was used to generate data; mothers were interviewed face to face and midwives through focus groups. The images and audio data were collected, transcribed and analysed for emerging themes. For the purpose of this article, only the midwives’ stories are reported. This research received a favourable ethical opinion from the University of Surrey Ethics committee. Ethical considerations This study received a favourable ethical approval from a higher education institutes ethics committee. Results Midwives who care for women whose babies are removed at birth report it as one of the most distressing areas of contemporary clinical practice. Furthermore, they report feelings of guilt, helplessness and betrayal of the midwife–mother relationship. Many of the midwives in this study state that these experiences stay with them for a long time, far more than more joyful aspects of their role. Conclusion Midwives experience moral distress. Support systems, education and training must be available to them if we are to reduce the long-term impact upon them, alleviate their distress and prevent them from leaving the profession. (shrink)

In this article, we explore the possibility of adding a new role to the clinical encounter: an illness doula. Even though research and education in medical humanities and narrative medicine have made improvements in humanizing healthcare, progress is slow and ongoing. There needs to be an intervention in the practice of healthcare now for people currently going through the system. An illness doula, like a birth doula, would facilitate and insure that attention is paid to the personal needs and desires (...) of the patient in the present system. We envision illness doulas having the ability and availability to accompany the patient throughout the healthcare process, to help communicate with clinicians, and to ensure that patient preferences are understood and respected along the way. We discuss how this idea emerged through the clinical encounters of two of our authors, the possibilities and limitations of creating a new role for illness doulas, and the logistics of how to put this new role into play. (shrink)