Jaxon McGrorery-Smith was an infant who suffered from a "severe to profound hypoxic ischaemic insult". As a result of his poor prognosis, the decision was made by his parents to place Jaxon in palliative care.
The length of time (27 days) between the withdrawal of life sustaining measures and Jaxon's death, and the issues which arose during this period, were said to be unusual such that it warranted investigation by the Coroner. Ultimately, the standard of care given was found to be appropriate.
Jaxon McGrorery-Smith was born to his parents, Kirsty McGrorey and Lisa Smith on 20 October 2011. Within hours of his birth, Jaxon began to experience clinical and electrical seizures and required respiratory support. A Cerebral MRI performed on 21 October 2011 confirmed that Jaxon had suffered a "severe to profound hypoxic ischaemic insult".
Jaxon's condition continued to deteriorate and after consultation with the senior staff specialist neonatologist, Dr Wright, Jaxon's parents indicated on 22 October that they wished to withdraw intensive care measures, beginning palliative care. At this stage, the parents were also advised that it was not possible to say how long Jaxon could survive without intensive care measures, and that the period could range from hours to weeks.
Later that day, the Brainz monitor, the endotracheal tube, and the Peripheral Intravenous Catheter (PIVC) in Jaxon's arm (supplying anti-seizure medication) were removed. Notably, Dr Wright indicated that there was no point treating Jaxon's seizures with anticonvulsant medication as it would only prolong his suffering. Jaxon was also moved to the maternity ward however his parents were informed that they were free to contact the NICU again at any time.
During this time, Jaxon would receive neither food nor fluid as this was an invasive procedure that would likely prolong Jaxon's demise. Dr Wright however noted that appropriate relief would be provided to Jaxon if he was observed to be in distress and in such case, opiates would be given.
On the morning of 27 October 2011, Jaxon's parents rang the Neo-natal ICU. Two Nurses from the NICU went to the maternity ward where Kirsty and Lisa expressed concern about whether Jaxon was becoming distressed because he had cried out a few times during the previous night and was grimacing at times. Dr Wright recorded in progress notes that it was appropriate to start Jaxon on opiates for relief. Jaxon continued to receive morphine throughout the next several days. The dosage was increased three times, once on 8 November 2011 to 1.2mg, again on 15 November 2011 to 1.5mg and finally on 16 November 2011 to 2mg.
Jaxon passed away on 19 November 2011.
The inquest identified the following issues:
- Whether Jaxon's parents were provided with adequate time and opportunity for discussion and reflection;
- Whether they were provided with the opportunity to review their decisions, once made;
- Whether the cessation of intensive care, including the cessation of anti-convulsant medication, food and fluids, amounted to appropriate palliative care; and
- Whether the NSW Health Guidelines regarding the end-of-life care and decision making were appropriately followed and whether any guidelines ought to be updated following this inquest.
The Inquest answered in the affirmative to all issues.
Experts enlisted by the Coroner confirmed that Jaxon's parents had been provided with adequate time and opportunity. It was noted that the discussions had regarding the implications of the MRI findings, and the issue of palliative care, were consistent with the practice of most neonatologists. The information provided to the parents regarding Jaxon's prognosis and the withdrawal of care were adequate for informed decision making.
The withholding of artificial hydration and nutrition, and the use of morphine in Jaxon's case was also consistent with New South Wales Guidelines. Expert evidence referred to noted that the median time between withdrawal of artificial nutrition and hydration was within a range between 2 and 37 days. Jaxon's death at 27 days was therefore consistent with published literature.
With respect to the potential to update relevant guidelines, expert evidence highlighted the value of input from specialised palliative care professionals and the use of advanced care plans in end of life care. Further, it was emphasised that there was value in ensuring consistency in understanding and communication, noting some miscommunication in Jaxon's case regarding the ceasing of anti-seizure medication. The Coroner recommended to the NSW Minister for Health that consideration may be given in review of the relevant Guidelines whether there ought to be reference to palliative care professionals, and the role of such professionals might play in the end of life care and decision making for infants.
Finally, given that the Resuscitation Policy Directive specifically excluded neonates less than 29 days old, there was also a question as to whether the NSW Guidelines ought to refer to resuscitation plans and advance care plans in general for neonates less than 29 days old. It was noted that there was value in ensuring consistency in documentation across end of life care planning.