A recent coronial decision has provided reassurance to clinicians that the inquisitorial system has the capacity to highlight good clinical care.
When an inquest concerning treatment provided in a hospital is announced, staff at all levels feel anxious and apprehensive about the care they have provided being subjected to such public scrutiny. Frequently the Coroner is critical of systemic failures, lack of documentation and errors in judgement that may cause or contribute to a patient’s death. It is intended that these criticisms and the recommendations for change improve healthcare delivery and patient outcomes. For the clinician involved it can sometimes be hard to recognise this intent.
This case, however, is an example of exemplary care provided in extremely distressing circumstances – the tragic loss of an infant. It is unique as the focus is on the management of an inevitable outcome, as opposed to how the death may have been prevented. Inquests centring on palliative care are rare. These findings demonstrate why.
Jaxon McGrorery-Smith was born on 20 October 2011. Shortly after his delivery, Jaxon began experiencing seizures and respiratory distress. Investigations revealed a profound hypoxic brain injury and following consultation with specialist teams, his parents made the very difficult decision to withdraw life sustaining treatment.
Jaxon was transferred to the palliative care team on 22 October 2011. He died at home on 18 November 2011. It was the lengthy 27 days between the withdrawal of treatment and his death that led to the Coroner’s inquiry.
Issues for the Coroner
The inquest examined the following¹:
- In relation to end-of-life care decision-making:
(1) Were Jaxon’s parents provided with adequate time and opportunity for discussion and reflection?
(2) Were Jaxon’s parents provided with the opportunity to review their decisions, once made?
- Did the cessation of intensive care, including the cessation of anti-convulsant medication, food and fluids, amount to appropriate palliative care?
- Were NSW Health Guidelines regarding end-of-life care and decision making appropriately followed? Ought the Guidelines be reviewed and updated following any findings from the inquest?²
Time and opportunity
It is widely acknowledged that care of the palliative patient is equally focused on the care of the palliative patient’s loved ones. Certainly, a devastating diagnosis takes time to process. Families and loved ones commonly have many questions and sometimes there is confusion when coming to terms with such news. Clinicians are trained to be patient and provide support, and additional input from other staff such as social workers and specialist nurses is frequently provided.
The evidence in this case demonstrated (and ultimately the findings supported) that there were multiple discussions with Jaxon’s parents from the time his brain injury was realised until his death. There are numerous references to the well documented discussions with intensive care, palliative care and social work professionals.
Importantly, Professor Dominic Wilkinson, the Coroner’s expert neonatologist and Professor of Medical Ethics opined that sufficient time had been afforded to Jaxon’s parents for them to make the decision to move Jaxon to palliative care, acknowledging that such serious decisions carried some degree of urgency, in terms of not prolonging the likelihood of death. The Coroner also concluded that the contemporaneous records demonstrated that the implications of Jaxon’s condition were adequately explained to his parents and that they were given sufficient time to make what was clearly a distressing and difficult decision. Professor Wilkinson was also of the view that the records documented regular contact with Jaxon’s treating neonatologist, Dr Wright, and given that there was no neurological improvement or change in Jaxon’s condition and the parents’ decision to palliate, there was no basis on which the decision to withdraw intensive care should have been reviewed, although he noted that there was ample opportunity to do so.
Appropriate palliative care and within guidelines
The Coroner examined the 2005 NSW Health End-of-Life Care Guidelines³ when reviewing Jaxon’s palliation. Dr Campbell, an expert consultant neonatologist assisting the Coroner, expressed the view that although appropriate, the withdrawal of hydration and nutrition up until 18 November 2011 seemed to be “at the extreme limit of palliative care guidelines”. This view was supported by the other experts.
Professor Wilkinson quoted a Canadian study which provided evidence that the average time between withdrawal of artificial nutrition and hydration and death in neonates was 16 days with the range being from 2 to 37 days. He stated that this was consistent with his own experience as a neonatologist.
It was noted by another expert that decisions surrounding feeding and hydration in end-of-life care are difficult and ethically challenging.
The Coroner reviewed the care provided to Jaxon, including the medications he was prescribed and concluded that the “end of life care provided to Jaxon was consistent with the principles set out in the NSW Guidelines”.
This case, undoubtedly tragic, is an example of careful, compassionate and thorough delivery of care to a palliative neonate and his family. It is apparent from the findings that staff members from the multidisciplinary teams were totally engaged and professional and documented the numerous discussions that took place with the family during Jaxon’s life. Clinical planning and decision making often takes precedence in medical notes but the meeting entries provided vital evidence of the holistic approach the team took in caring for Jaxon and his family. It is pleasing that the findings recommended further enhancements to end-of-life care in NSW and shone a light on the excellent care the hospital and staff provided to Jaxon and his parents.
The full article was published in the Health Law Bulletin 2019 Volume 27 No. 3 page 45
¹ Inquest into the death of Jaxon McGrorery-Smith (Coroners Court NSW, 14 November 2018) at paragraph 13.1
² & ³ NSW Health End-of-Life Care and Decision-Making – Guidelines (GL2005_057), published 22 March 2005
- In relation to end-of-life care decision-making: