How palliative care is delivered to infants with life-limiting conditions: Findings from two research studies
An article written by Rebecca Iten, Fenella Gill and Moira O'Connor
Infants aged less than 12 months of age represent the highest prevalence of deaths in childhood. The care of infants is complex, complicated by uncertain prognosis, lengthy hospital stays, invasive procedures and the prospect of sudden deterioration and death.
The research journey
Having worked in the paediatric palliative care speciality over the past eight years, I noticed that only a small number of infants were referred each year to the paediatric palliative care service. I also found there to be similar experiences reported anecdotally across Australia by other specialist paediatric palliative care teams.
Further, whilst delivering a palliative care education program for nurses working in Western Australian neonatal intensive care units, I received feedback from nurses that although they frequently provided end-of-life care to infants, they had not received any specific palliative care education and at times felt under-prepared to provide palliative care. It was through these experiences that I developed an interest to further explore the area of palliative care for infants for my research degree.
The study
We conducted two pieces of research: a retrospective study of infants with life-limiting conditions who died in three tertiary hospitals in Western Australia [1], and an integrative review of the literature to better understand how palliative care is delivered to infants with life-limiting conditions and examine the involvement of specialist palliative care teams. [2]
The findings
45 infants who received care and died during 2018-2019 were included in the study. The retrospective study identified less than a quarter of infants who died received specialist palliative care consultation, with majority of deaths occurring in intensive care units. Furthermore, standardised advance care planning processes were used for just over 10% of infants and psychosocial aspects of palliative care including bereavement support were infrequently reported.
The integrative review identified 37 articles. Studies were conducted from 14 countries and included cases series of newborns up to age 18 years (24 studies), health professionals (8 studies), and bereaved parents (5 studies). Two models of palliative care delivery were identified and examined: 1) palliative care delivery with specialist palliative care services, and 2) palliative care delivery by the primary health care team without specialist palliative care consultation. The two models illustrated differences in care received and experiences of families and health professionals. Nurses and Doctors working in neonatal intensive care settings reported lack of palliative care education, experienced challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions.
Key takeaway messages and recommendations to inform improvements in the delivery of palliative care to infants and their families:
- There is opportunity to enhance the delivery of palliative care to infants and their families in the areas of advance care planning, end-of-life care preferences and psychosocial support.
- Optimal palliative care should encompass a coordinated and collaborative approach between the primary healthcare teams and specialist palliative care services.
- Infants and their families may benefit from earlier integration of palliative care principles alongside curative treatment and include specialist palliative care service consultation.
- Prioritisation of palliative care education for health professionals, developing skills and confidence to deliver high-quality palliative care.
Authors
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Rebecca Iten
Nurse Educator - Paediatric Palliative Care
Perth Children's Hospital, Child and Adolescent Health Service, Perth, Western Australia
School of Nursing, Faculty Health Sciences, Curtin University, Perth, Western Australia
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Fenella Gill
Professor of Acute Paediatrics
Perth Children's Hospital, Child and Adolescent Health Service, Perth, Western Australia
School of Nursing, Faculty Health Sciences, Curtin University, Perth, Western Australia
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Moira O'Connor
Associate Professor
School of Allied Health, Faculty Health Sciences, Curtin University, Perth, Western Australia
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Reference
- Iten R, O'Connor M, Cuddeford L, Gill FJ. Care management trajectories of infants with life-limiting conditions who died before 12 months of age: A retrospective patient health record review. J Pediatr Nurs. 2023 May-Jun;70:e22-e31.
- Iten R, O'Connor M, Gill FJ. Palliative care for infants with life-limiting conditions: integrative review. BMJ Support Palliat Care. 2023 Dec 9:spcare-2023-004435.