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Withdrawal of life sustaining medical treatment for a child - case study

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Our Community Care and Court of Protection team deals with complex cases relating to the withdrawal of medical treatment. This is a case study providing a summary of one of our recent cases, highlighting the very difficult and sensitive nature of these cases.


The case concerns an emergency application made by Kings College Hospital NHS Foundation Trust to the High Court on 23rd June 2015, in respect of a 7 year old child, Y.

Y suffered with Spinal Muscular Atrophy, resulting in extensive muscle weakness impacting adversely on bodily functions including breathing, coughing and swallowing. The condition does not affect intelligence, and prior to medical difficulties arising, Y was an alert, interactive, happy and smiling child who had a good quality of life despite her extensive muscle weakness.

Unfortunately, Y’s condition deteriorated, culminating in two episodes of cardio-respiratory arrest. As a result of these episodes, Y suffered a hypoxic eschaemic change in her brain, resulting in her neurological condition deteriorating significantly. Y’s treating consultant was of the view that Y’s severely altered neurological state was irreversible. Highlighting the extent of the deterioration, Y had previously been verbally communicative and had made use of an iPad, however, she now made no attempt at communication and showed no evidence of cognitive activity.

As a result, Y was in the paediatric high dependency unit of the hospital and was dependent on airway pressure, regular suctioning, chest physio and cough assist. She had input from respiratory, palliative care and critical care teams.

Consideration was being given to whether a plan could be implemented to discharge Y home, however, on 23rd June 2015, her condition deteriorated significantly to the point that she required constant non-invasive ventilation. It was considered that Y would likely die at any time if the invasive ventilation (in the form of intubation and artificial ventilation) were to be removed. Medical professionals were of the view that such invasive ventilation would not be in Y’s best interests in circumstances where she would derive no benefit from it beyond her life being prolonged artificially, in her irreversible neurological state, and that any attempt at CPR (should Y suffer cardio-respiratory arrest) would not be in her best interests.

Y’s parents disagreed with this and considered that Y should be intubated and receive invasive ventilation (and that CPR should be provided if necessary). The parents believed that this treatment would enable Y to recover to the position she was in prior to her cardio-respiratory arrest and her return home.

The Court application and first emergency out of hours telephone hearing:

Due to the dispute between the medical professionals and the parents, the NHS Trust applied to the High Court for an Order to be made as to whether the proposed course of action to remove artificial ventilation would be in Y’s best interests.

At the out of hours hearing, the following declarations were made by the Court:

“i) that it was lawful for the Trust, being in Y’s best interests, to withhold from Y endotracheal intubation and invasive ventilation;

ii) that it was lawful, being in Y’s best interests, for her not to receive cardio-respiratory resuscitation (CPR) and resuscitation drugs;

iii) that in the event that Y became severely distressed and / or was in pain due to further deterioration of her medical condition, it was lawful and in her best interests for her to receive pain medication (such as morphine) and / or sedation for the purpose of relieving her pain and or distress, accepting that, in an end of life situation, such medications may reduce her respiratory drive and might therefore shorten her life (as a consequence and not as an aim).” (see [2015] EWHC 1920 (Fam)).

Following the out of hours hearing, we were instructed by Y’s father, MH, and represented him at a final hearing on 26th June 2015 to consider directions and the continuation of the above declarations.

Updating expert reports were requested which concluded that whilst there was potential for Y to suffer further neurological deterioration, there was no hope for neurological improvement, and it was therefore not in Y’s best interests to re-intubate her and keep her permanently ventilated. The expert’s view was that continued ventilation would prolong suffering and would risk keeping Y in a permanent vegetative state. Medical opinion was therefore clear, that Y had suffered a severe and irreversible brain injury that would not be changed by a period of re-intubation.

After receiving the updating expert report, the father no longer wished to actively contest the Trust’s proposed course of action, however, understandably felt unable to agree to it. The Court highlighted and emphasised the dedication and love of Y’s parents and family to Y and her care, and stated that the views of the parents should be given great respect.


The Court concluded that “with a very heavy heart” the declarations should be made final and ventilation withdrawn, due to the poor quality of Y’s life, stating:

“again having regard to all of the evidence…, having regard to the strong presumption in favour of prolonging life and having regard to Y’s best interests as my paramount consideration, I remain of the view that any further aggressive invasive treatment, even if having the result of prolonging her life, cannot be said to be in Y’s best interests.” (para 59 [2015] EWHC 1966 (Fam)).

The Court referred to the Royal College Guidance, which provides that even in the absence of demonstrable pain or suffering, the administration of life sustaining treatment to a child may not be in his or her best interests where it cannot provide overall benefit.

The concluding comments in the judgement sum up the sad reality of the case and the weight of the decision that the Court was faced with:

“the strong presumption in favour of a course of action that will prolong life is not an irrebuttable one. This position reflects the fact that life, as precious as it is, cannot be, and indeed should not be preserved at all costs in the face of its natural conclusion.” (para 58,)

Sophie Maloney, trainee solicitor, community care and court of protection