Situation A five week old infant admitted to a tertiary paediatric hospital with coryzal symptoms on a background of Edwards Syndrome (Trisomy 18) and congenital cardiac disease. Despite her grave prognosis, she was intubated and ventilated. She spent many months in hospital, eventually having surgical repair of her cardiac defect which had little or no effect on her clinical condition. She was discharged to a children’s hospice after seven months in our hospital (with short periods at home and her local hospital), at the age of eight months, for end of life care. As pharmacists actively involved in her care, but with limited input to her ethical situation, we suffered moral distress.
Background Edwards Syndrome is a rare genetic condition which occurs in 1 in 5000 live births. Infants are severely disabled. Accurate figures for miscarried or terminated pregnancies are not available. Only 8% of babies survive beyond one year unless they have a less severe form (mosaic or partial).1 Our patient had a post-natal diagnosis and her parents were determined that she be given every opportunity that would be offered to a non-Edwards child. We are three pharmacists who work in paediatric intensive care and paediatric cardiology. We were actively involved in the care of this patient and her family for several months. Although we work closely with the multidisciplinary team, we were not included in discussions about appropriateness of interventions. We were however, expected to speak to her parents about medicines on a regular basis, including during a very difficult and prolonged wean of sedation which was causing physical distress to the patient and her parents.
Outcome Being involved in interventions which are unlikely to improve or extend a patient’s life is difficult, but especially so when you have had little or no influence on the original decision. The eventual outcome was exactly as predicted on admission: she was discharged to a hospice and expected to deteriorate slowly. Her discharge was written by one of the PICU pharmacists and her parents were counselled by another, so we were involved until the end of her admission.
Discussion As a pharmacy team, we only have each other to talk to: our distress cannot compare to that of medical or nursing staff who are more closely involved in the patient. We are limited in what we can discuss outside of work due to patient confidentiality. With the relatively recent introduction of pharmacist independent prescribing in our PICU and cardiology wards, we are often asked to prescribe outwith our comfort zone and are able to refuse. As our prescribing roles become more embedded, our comfort zone will expand and we will be expected to prescribe in morally ambiguous situations such as this one. Studies have shown that community pharmacists are prone to moral distress,2 as they work in a highly regulated profession and their actions are often bound by laws and contracts over which they have little control, and in hospital we suffer the same fate.3
Wu J, Springett A, Morris JK. Survival of trisomy 18 (Edwards syndrome) and trisomy 13 (Patau Syndrome) in England and Wales: 2004–2011. Am J Med Genet Part A 2013;161A:2512–2518.
Astbury JL, Gallagher CT, O’Neill RC. The issue of moral distress in community pharmacy practice: background and research agenda. International Journal of Pharmacy Practice 2015;23(5);361–6.
Prentice T, Janvier A, Gillam L, et al. Moral distress within neonatal and paediatric intensive care units: a systematic review. Archives of Disease in Childhood 2016;1012(8):701–8.
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