Amelia

Amelia was suggested to me as a participant via friends who had heard her speaking about ethical issues that were troubling her at work. After qualifying in Lisbon she had started her career as a paediatric ICU (ED in Portugal) nurse in Portugal but told me that she had always had an interest in humanitarian work and had hoped to do that in the future. Three months into her placement, she saw an opportunity to exchange places with a nurse from a different department, designed to encourage nurses to build new skills and gain experience. Through this scheme, she spent 6 months working in an adult ICU department while another nurse took her place in ED. During this time, she saw that in order to gain employment working for an NGO in a humanitarian capacity, it would help to have a Professional Diploma in Tropical Nursing, something offered by The London School of Hygiene and Tropical Medicine. She moved to London to study this and laughed as she said how she thought she’d be in London for 1 or 2 years at most, but she actually ended up there for 7 years. During this time, she worked briefly in Ghana and then did agency nursing for various hospitals and children’s homes but was never in a post long-term. Amelia told me that as a child she dreamed of becoming a travelling photographer, she told me “I just imagined myself in this in a savanna on top of a jeep. You know, taking photos of wild animals. In London she mostly worked with children who were not on long-term ventilation, but who had a tracheostomy and a portable ventilator. She realized that she was probably not taking any long-term contracts as she didn’t want to stay in the city long-term. She moved to Oxfordshire and found a job in a Paediatric Intensive Care Unit (PICU) easily as there were many positions available. She began her role at her current hospital in September 2019, and she continues to work there now.

I explained Georgina Morley’s definition of moral distress to Amelia, and how it is based on two occurrences; the moral event and then the psychological distress; she said it made her instantly think about the lake where she goes to process difficult days. I noticed that in this first interview she didn’t go into detail about anything too specific, but she did mention “a child” a few times. I understood that this child was a particular patient with whom there had been a lot of moral tension for Amelia, but she did not offer any details during the first interview.

Amelia sent me a few photographs and then asked for a catch-up meeting, to check that she was doing the exercises “correctly.” It was during this chat that she opened up more about the child with whom she was working and the complexities of the situation. She explained that the boy had been in PICU for a couple of years as he had a degenerative condition which meant that he was no longer able to communicate with the staff. Amelia described how she moved him every day as carefully as she could with her colleague, so that he could pass some of his day in a chair. Naturally, the period of time that he had been in the department meant that many staff had become quite attached to the patient, and it was increasingly difficult to witness his decline. On top of this, Amelia explained that there was no Do Not Resuscitate (DNR) order as the family belonged to a religious community, and this meant their approach to end-of-life care was already determined. The thought of performing CPR was terrifying for Amelia as the boy was so fragile, but by law, she was obliged to, should the need arise. The department had told the family that their advice was to move towards palliative care for the child, to make him as comfortable as possible for the end of his life, but the family had asked for a second opinion but had claimed that they had not read the file. The nurses did not fully believe this as the second opinion was also to move into palliative care. Amelia explained that the hardest part for her was discovering that the boy had a fracture in his leg. This was due to the deterioration of his bones, but no one knew when it had happened and how long it had been there for. For Amelia to imagine that she may have caused this was awful and each time she lifted him out of bed, she felt anxious and worried afterwards. The moral events and distress associated with this patient were so challenging, that Amelia had spoken to a consultant about the distress it was causing, and they had decided to initiate the development of an ethics scheme to support staff.