The meeting was supported by the Department of Health and Ageing, as well as the Perinatal Society of Australia and New Zealand (PSANZ), and the Children’s Bioethics Centre. It provided a valuable and rare opportunity to focus attention and to share experiences on the care needs of foetuses and newborn infants with life limiting illnesses.
This meeting came about after an Australian Senate Inquiry into Palliative Care in 2012. A number of health professionals had made submissions to that Inquiry drawing attention to the paucity of palliative care services for newborn infants in Australia. It was clear that this represented an area of genuine need, but also that some professionals had developed experience and expertise in the area.
Subsequently, a number of us decided to form a special interest group within PSANZ focused on perinatal palliative care, and to organise a meeting that would look at how to improve service provision.
The meeting started with presentations on the current state of perinatal palliative care in Australia. We heard the eloquent and moving testimony of Pauline Thiele, a Victorian woman who has written in several medical journals of her son Liam, diagnosed early in pregnancy with Trisomy 18. Pauline made points that were echoed by a number of speakers during the day. The possibility of live birth, and of spending a small amount of time with their child alive, is hugely important for many women. Pauline described the importance of clear, empathic communication, as well as highlighting the harm of poor choice of words (for example, the use of the word ‘lethal’). The meeting also heard about research conducted in Victoria by genetic counsellors Jan Hodgson and Melody Menezes and about successful perinatal palliative care programs in Perth and Auckland.
The second session of the day examined a range of problems and barriers for perinatal palliative care. Maternal Fetal Medicine specialist Professor Sue Walker highlighted the different groups of babies who may benefit from palliative care, including those following prenatal diagnosis, but also infants born around the margin of viability but not resuscitated, and those who have not responded to neonatal intensive care treatment. Professor Walker described the challenge for obstetricians of wanting to avoid harm to the woman while also respecting her choices about the care of her unborn child. These ethical and personal challenges were also drawn out in two other presentations by neonatologists.
The afternoon sought suggestions and solutions for improving perinatal palliative care. Fiona Hawthorne presented the findings of her Churchill Fellowship, looking at perinatal palliative care models overseas. A coordinated, multidisciplinary (or interdisciplinary) approach, drawing on existing skills within perinatal care appeared to be most likely to meet the needs of women, and to be feasible. This would need local champions, and would ideally build on the expertise of social workers, perinatal bereavement counsellors, paediatric palliative care services as well as on community support groups such as Stillbirth and Neonatal Support Group (SANDS).
However, it was also critical to consider how care could be provided in rural and regional communities, as well as for Indigenous families, and families from other ethnic and cultural groups. Discussion highlighted the need for education of health professionals and for greater awareness within the community about perinatal loss and palliative care. We discussed the role of the internet in providing information about choices and about support services, but also the dangers of distorted and biased information that could be very harmful.
Our meeting concluded with a discussion of the main research questions in this area. There have been few studies in perinatal or neonatal palliative care, and there were many questions that need to be answered, particularly around how best to support families.
Perinatal palliative care is, in some ways, the final frontier in palliative care. There is much that can be done, and that needs to be done to provide adequate support for infants with life limiting conditions and their families.