“5. [O’Bs] clinical examination is now much worse than before: i. His eyelids are shortening as the muscles remain contracted and this has resulted in his eyes being partially open all the time with no blinking, meaning that the only way to protect his corneas is with eye drops regularly by the nursing team ii. His entire core and trunk is severely spastic with continuous unrelenting muscle spasm. iii. His breathing is relatively regular although the pattern is abnormal with varying tachypnoea and bradypnoea iv. If you try to flex his neck, his whole body moves as one, and each breath the ventilator or he takes causes head movement because of the truncal spasticity v. His abdominal muscles remain tightly contracted all the time vi. When he is fed, the nurses notice he passes very loose stool in the next hour or so and despite being fed a good amount of calories he appears to be getting thinner. I have concerns his feed is not being properly absorbed. vii. He had very thick and offensive secretions from the ETT in the week of 14 January. We started oral antibiotics after sending a sample. Two bacteria were growing in the sample, but he had been on the correct antibiotics already and had not been feverish. The secretions were improving.” i. His eyelids are shortening as the muscles remain contracted and this has resulted in his eyes being partially open all the time with no blinking, meaning that the only way to protect his corneas is with eye drops regularly by the nursing team ii. His entire core and trunk is severely spastic with continuous unrelenting muscle spasm. iii. His breathing is relatively regular although the pattern is abnormal with varying tachypnoea and bradypnoea iv. If you try to flex his neck, his whole body moves as one, and each breath the ventilator or he takes causes head movement because of the truncal spasticity v. His abdominal muscles remain tightly contracted all the time vi. When he is fed, the nurses notice he passes very loose stool in the next hour or so and despite being fed a good amount of calories he appears to be getting thinner. I have concerns his feed is not being properly absorbed. vii. He had very thick and offensive secretions from the ETT in the week of 14 January. We started oral antibiotics after sending a sample. Two bacteria were growing in the sample, but he had been on the correct antibiotics already and had not been feverish. The secretions were improving.”
“17. [OB] has shown no sign of any neurologic recovery in over more than 2 months in intensive care. 18. He has no discernible brain stem function bedsides breathing. 19. He is fully dependant on the endotracheal tube, the ventilator and 24-hour intensive nursing care to maintain airway safety, effective breathing and survival. 20. His body is now demonstrating the signs of previous severe neurologic injury with fixed flexion contractures of eyelids, abdominal muscles, hands, and upper and lower limbs.”
“[OB’s]’s condition reflects severe, irreversible, brain injury, resulting in loss of cerebral function, incompatible with long term survival. While some degree of brainstem recovery may occur, this would only allow for limited respiratory function and would not alter the underlying prognosis. My recommendation aligns with that of the [PICU] team: • One-way extubation with transition to comfort-focussed care. • Parental involvement in decision-making, including the option for extubation at home/hospice with palliative care support. This approach prioritizes [OB’s] dignity, minimizes suffering and ensures the family receives appropriate support during this difficult time.”
“h. My overall opinion is that continuing medical care is futile. There is no hope that [OB] will improve and his health and neurological state with relentless decline. He cannot engage with his environment or parents in any way or to receive or demonstrate love in a meaningful way, nor to participate in play or other activities that give people pleasure and meaning. I accept he is unable to feel pain or demonstrate upset, but this is reflection of how severe his neurological disease is. i.In my opinion, it is in his best interests to move towards a palliative care approach in which he is extubated and given medications to keep him comfortable, if required. I expect he would gasp and breathe for a period of time, which may be several hours, but then he would die in peace.”
“Benefits and Burdens to [OB]: 60.[OB] is currently protected from experiencing the burdens of his current treatment because of his lack of awareness and indeed lack of obvious sentience. Any recovery of these functions could mean that he would begin to experience the discomfort associated with his situation and the interventions it requires. 61.Other than maintaining the existence of life, there are no benefits. He has no signs of awareness and does not experience pleasure in even the simplest things available to him, such as feeding. 62.Given the time that that has passed since [OB’s] brain injury I believe it is possible to predict what the long-term future would hold for him. He would need invasive ventilatory support and therefore 24 hour care. 63.He would not see, hear, move, feed or perhaps interact in any way. He would require to be fed by gastrostomy. He would have recurrent chest infections. He would have severe dystonia. 64.The burdens on him are only likely to increase over time. Conclusions: 65.[OB] derives no benefit from the life that he is experiencing at the moment and I do not expect that he will come to derive any benefit in the future. Indeed it is likely that what will increase is the burden that he experiences as he accumulates more of the problems associated with chronic ventilation, chronic nutritional failure, recurrent infections and severe dystonia. 66.I have looked after many children who have experienced Out of Hospital Cardiac Arrests and [OB] is at the extreme of severity of neurological problems at this stage. 67.I believe that long term ventilation is not in his interest and that extubation without reintubation is appropriate and that his care should be re-directed towards palliation.”
" Whilst its application requires sensitivity and care of the highest order, the law relating to applications to withdraw life sustaining treatment is now clear and well established. It can be summed up with economy by reference to two paragraphs from the speech of Baroness Hale in what is generally regarded as the leading case on the topic, notwithstanding that it related to an adult, against the backdrop of theMental Capacity Act 2005 ."