This matter concerns an application by the Sandwell and West Birmingham NHS Trust (the Trust) seeking declarations as to AB’s capacity to make decisions about serious medical treatment and as to her best interests in respect of whether she should receive life sustaining treatment such as cardio-pulmonary resuscitation and other intensive treatment, should such treatment become necessary.

AB is now 20 years old. She was diagnosed with cerebral palsy at 18 months following a septic infection which resulted in blood poisoning and brain damage. She is represented in these proceedings by the Official Solicitor as her litigation friend and solicitor. There has been no issue in these proceedings that she lacks capacity to make these decisions within the meaning of the Mental Capacity Act 2005. The other parties are AB’s parents and the local Clinical Commissioning Group (CCG).

What was thought to be the relevant CCG was joined as a party, however it transpired it should have been a neighbouring one. The correct one was only served with the order earlier this week. They have not attended court or made any representations.

The matter was listed before me on 30 July as a final hearing to determine the declarations being sought. After hearing some oral evidence from Dr X (Consultant, Intensive Care Medicine and Anaesthesia) the parties were able to reach agreement on the substantive issue, and I approved the resulting order as being in AB’s best interests.

There remained two matters that were not agreed; the applicant’s liability for the costs of the OS for the out of hours application and any guidance regarding out of hours applications. I put those two matters over to today, 1 August.

In the intervening period the OS has reviewed his position and confirmed yesterday he was content with an order that the Applicants pay half his costs. That is agreed.

On the remaining issue concerning guidance I have had written submissions from the parties (including a statement from the parents’ solicitor) and seen the transcript of the out of hours hearing on 20 June.

Even though agreement was reached on the substantive matter, I considered it was important that the court sets out the reasons why the substantive order was approved.

AB has a diagnosis of a severe learning disability, cerebral palsy, severe kyphoscoliosis, type 2 diabetes, epilepsy, hypothyroidism and hypoadrenalism. She is currently an inpatient at a hospital run by the Trust where she has been since 12 June.

AB is generally cared for by her parents at the family home where she lives with her parents and two siblings. Her parents are her main carers, which they undertake with significant commitment and devotion. A measure of this commitment is demonstrated by one of the intensive care consultants reporting how the father set the alarm clock at 2 hour intervals during the night to ensure AB received suctioning at an appropriate frequency. During her stay in hospital they have not left her alone, other than when they took part in these court proceedings. Their dedication to her has been rightly commended by Dr Bell (Consultant, Intensive Care Medicine and Anaesthesia) who was instructed by the OS to prepare a report. Most of the time AB is bed bound, but is able to spend small amounts of time sitting in an especially adapted chair. Her mother reports her having small amounts of deliberate movement in one of her hands. She is fed through a naso-gastric tube and is faecally incontinent. AB is registered blind and is hard of hearing. She is able to communicate in a limited manner through facial expressions and sounds and responds to those she knows well, such as her parents and siblings.

She was admitted to the hospital during the evening of 12 June 2014 with a history of an illness lasting 2-3 days. AB’s GP prescribed antibiotics over the telephone, but her parents called an ambulance as they were concerned by her deterioration. They were right to be as it transpired she was suffering from pneumonia in the left lung. She was admitted to the Intensive Treatment Unit (‘ITU’) where she remained until 16 June, when she was discharged to the ward. Unfortunately AB deteriorated again and was re-admitted to the ITU on the morning of 20 June.

The Trust brought this application because AB’s treating medical team did not consider that, in the event of her condition deteriorating, it would be in her best interests to receive

invasive ventilation

The application was initially made to me as the out of hours judge at about 5.15 pm on Friday 20 June 2014. The only information I had was the application, some medical notes and a two page document from Dr Y, the joint speciality lead in critical care medicine at the hospital.

According to the statement from Ms Lucas (the Trust’s external solicitor) she received a telephone call on 20 June from Dr Z (medical director at the Trust) ‘advising that there was a patient in the hospital without capacity, and there was a disagreement with the patient’s family regarding treatment’. She was told that the parents initially agreed with the clinical team’s view that AB should not have invasive ventilation, renal support in the event of multi-organ failure or CPR in the event of cardiac arrest in the context of deteriorating multi organ failure. A ‘Do not attempt cardio-pulmonary resuscitation’ form was completed and placed in AB’s records. She was discharged from ITU on 16 June and the following day the father questioned this further in the light of the development of a care package in the coABunity. It appears from the medical records that after the discussion with the father on 17 June legal advice was sought by the clinical team.

Ms Lucas was instructed there was a meeting between the parents and the trust on 19 June where the parents confirmed ‘that, although they did not want their daughter to be put through unnecessary distress, they did want everything to be done for her. AB’s parents asked for a written document setting out the limitations the clinicians thought were appropriate and this was provided to them.’

Ms Lucas said she was also sent a copy of a letter from Irwin Mitchell acting on behalf of AB’s parents sent at 18.28 on 19 June asking for confirmation by 10am on 20 June that the Trust would remove the ‘do not attempt cardio pulmonary resuscitation’ or make an urgent application to the court.

Ms Lucas states that at the time of her conversation with Dr Z she was informed AB was deteriorating again and had been re-admitted to the ITU and the ‘do not attempt cardio-pulmonary resuscitation’ form had been revoked temporarily. However, the clinicians treating AB were very concerned that due to her deterioration she may require cardio-pulmonary resuscitation over the weekend, which they considered would not be in her best interests and agreed an urgent application should be made to the court that day.

Whilst Dr Z was arranging for the records and a statement to be sent to Ms Lucas she informed the parents’ solicitor that an urgent application was going to be made. She then instructed counsel to make the application. She received the medical records that morning and the statement of Dr Y at 15.24 which she sent on to counsel.

Ms Lucas confirms at the end of her statement that after counsel had left for court AB’s condition had stabilised again, however the clinical staff remained concerned that her condition could deteriorate at any time and remained of the opinion that it would not be in AB’s best interests to receive certain treatments.

I had notice of the application at around 5pm and commenced the hearing at about 5.15; fortunately I had not left the Royal Courts of Justice, so the hearing was able to take place in a court room. Counsel for the Trust was present. I was informed the OS had been spoken to that morning but, according to the Trust, had indicated that they would need an order of the court before they could become involved. The OS records state they were informed by the Trust that they would not be required. The mother had joined the hearing by telephone, but it transpired she was taking that call in the public area of the hospital, which was clearly not satisfactory. The Trust state that a room was available, but the mother could not be found when the hearing started.

It quickly became apparent to me that AB needed her own representation, needed to be joined as a party and I contacted the Official Solicitor, Mr Pitblado. He was aware of the earlier approach to the OS by the Trust. He arranged for counsel, Ms Paterson to attend. It was only through good fortune that I was able to speak to the OS and Ms Paterson was available. I should record at this point the court’s gratitude to Ms Paterson, this case has greatly benefited from her considerable expertise in this area of the law.

The hearing re-commenced at about 7.30 pm with counsel for the Trust and the OS in court and the parents and Dr Y on the end of a telephone. It had not been possible to secure representation for the parents in the short time available. The statement from their solicitor sets out the necessary documentation (which includes original financial documents to demonstrate their financial eligibility) that is required to secure public funding, which was not readily available to the parents. An appointment had been made to take that information to the solicitors on the Monday 23 June.

I heard the evidence from Dr Y and the mother by phone. It became clear from the evidence that AB’s clinical condition had improved and stabilised. In her extremely effective questioning of Dr Y, Ms Paterson established that he was reasonably confident they could get AB over her current pneumonia and the likely cause of any deterioration would be due to a secondary infection to the point where she developed septicaemia. He accepted in that event there was a window of opportunity (between 12 and 48 hours) between AB deteriorating biochemically and in her clinical presentation that would alert the clinical team that she had septicaemia developing.

In the light of that evidence it became clear that it would not be appropriate to grant the declaration sought without further investigation, as there would be a window in which a further application could be made, if required. It was agreed AB would remain in the critical care unit, receive full care including life sustaining treatment and the do not resuscitate instructions removed. Directions were made leading to a further hearing on 24 June.

This position had been reached at about 9.45 pm; unfortunately there was no draft order in word format that could be amended. Counsel therefore had to draft an order from scratch which took some time. Following a short break I approved the draft order and the hearing concluded at 10.45 pm.

I made further directions on 24 June and 14 July and listed the matter for hearing on 30 July.

The further evidence filed included the report from Dr Bell, who had been instructed by the OS. He not only reviewed the papers and the medical records but also visited AB in hospital and met the parents. In his thorough and sensitive report he concluded that he was in broad agreement with the views of the clinicians with regards to deployment of life-sustaining medical treatment. Importantly in his report he stated

The updating evidence as to AB’s condition on 30 July was provided by Dr X (Consultant, Intensive Care Medicine and Anaesthesia), a member of clinical team. She remains on 24 hour non invasive ventilation (NIV) and is currently free from infection, her chest secretions have reduced, her temperature normal as is her white cell count and C-reactive protein. She has reached a stage with her restrictive lung problem that she has chronic respiratory failure and a very limited reserve to maintain her oxygen saturation if she develops any further lung damage. Her condition could very quickly deteriorate. At the moment she requires more oxygen than could be delivered by a home oxygen system. A multi disciplinary meeting to discuss discharge arrangements is arranged to take place in mid August. In his very helpful oral evidence Dr X was clear that upon discharge AB will require an appropriate ventilator, her parents will need to have been trained in the use of that ventilator, and appropriate persons will need to be available to support the use of the ventilator in the event that her parents are not available. Those are matters that will need to be discussed at the forthcoming multi disciplinary meeting.

In his statement Dr X said there was no formalised plan for palliative care in place, as he said it would be difficult to set out precisely what would be required. In his oral evidence he accepted that an indicative palliative plan could be discussed with the parents. It was agreed that there would be a short break in the hearing to enable that to take place.

Following those discussions the parties were able to reach agreement that it was not in AB’s best interests to be given certain life sustaining treatment. The parents accepted the conclusions reached by Dr Bell but were anxious, as was the court and the OS, that what was termed during the hearing as the ‘scaffolding’ was in place, to structure the likely future developments of either a return home or the need for palliative care. The arrangements for the meeting in August and an indicative palliative care plan formed part of the recitals to the order that was agreed between the parties.

I was entirely clear that the order that has been agreed met AB’s best interests on the evidence the court had. All the evidence pointed in one direction on this issue, in support of the order being made.

I can only echo what Dr Bell has set out in his report, and summarised in paragraph 27 above, about the need for an open mind to be kept, for there to be effective communication with the parents about clinical decisions and the need for there to be a robust, effective and responsive plan in place to facilitate AB returning to live at home if that becomes possible.

It is clear from the evidence in the case that the parents are enormously grateful to the clinicians on the ground for all they have done for their daughter. There is little doubt that her medical condition is extremely complex and requires specialist care, which she is clearly getting. The high level of co-operation between the clinicians and the parents was perhaps best demonstrated by the fact that during the 30 July hearing the parents were able to listen to Dr X give evidence, and then break off to discuss with him the indicative palliative care plan for their daughter in a constructive and helpful way.

As is clear from the transcript of the out of hours hearing there were a number of matters that concerned me about the timing and practical arrangements for the out of hours hearing on Friday 20 June.

I, of course, accept that in cases involving medical treatment, or the withholding of such treatment, it can be a difficult judgment as to when to make an application. This has to be looked at in the context of the realities of the situation in a critical care unit in a Trust such as this one. The person who is the subject of the application is not the only patient being cared for by the clinical team, and the situation can evolve on the ground quite quickly. I recognise also that I am considering these aspects with the benefit of hindsight, and after hearing submissions from counsel who are specialist in this field.

However, those considering making such applications should err on the side of making applications earlier rather than later. By doing so the necessary safeguards will be put in place in advance to support an effective hearing taking place, rather than risk what happened here, where those important safeguards had to be put in place as the hearing unfolded (such as involvement of the OS, ensuring the parents had the documents the court had and somewhere private from where they could participate in the hearing). This was particularly difficult in this case due to the time when the application was made, namely late on a Friday afternoon into the evening.

It must have been clear from the 17 June that there was an issue relating to this between the Trust and the parents; the medical records record the Trust sought legal advice then. The issuing of an application would not prevent efforts continuing to seek to resolve matters; they can, and should, run in parallel. But importantly, issuing the application earlier would have meant it was more likely there would have been an effective on notice hearing, with all parties being represented and their Article 6 rights being fully protected.

It is essential there is compliance with the relevant Court of Protection Practice Directions, in this context in particular PD9E Applications relating to the serious medical treatment and PD10B Urgent and interim applications.

In the situation I was presented with on 20 June some basic steps had not been taken and, with the benefit of hindsight, they should have been. These included

These observations, although made in the context of an application concerning an adult within proceedings in the Court of Protection, apply equally in similar proceedings under the inherent jurisdiction concerning medical treatment or the withholding of medical treatment for a child (in which CAFCASS Legal as opposed to the Official Solicitor would act on behalf of the child), where the relevant provisions in Part 12 FPR 2010 and PD12E Urgent Business apply.

As I hope I have made clear these comments are made with the benefit of hindsight. It is recognised that on the ground difficult professional judgments have to be made, and there will remain truly urgent cases that require applications to be made out of hours. However, I hope the message is clear that in this type of case; where significant medical treatment or withholding of treatment is at issue, or likely to be at issue, applications should be made sooner rather than later. As Mr Sachdeva and Ms Paterson submitted, this will ensure all the necessary safeguards are in place in terms of legal representation and notification to the Press. In addition, the advantages of a hearing taking place in normal court hours includes the court being able to hear parties and evidence in person, and proper recording facilities being in place.

Mindful of the comments made by Baker J in Re M (Adult Patient) (Minimally Conscious State: Withdrawal of Treatment) [2011] EWHC 2443 at paragraph 260 suggesting that consideration be given to the extension of non-means tested public funding to include applications for withdrawal of Artificial Nutrition and Hydration; in my view consideration should also be given to such an extension to disputes over resuscitation status.

I would like to conclude by paying tribute to the parents in this case. They have conducted themselves with great dignity in what was clearly a very distressing situation for them, where the subject matter of the out of hours hearing concerned such an intensely personal subject as to whether their daughter (who they devote such remarkable care to) should have life-sustaining treatment. They rightly deserve the admiration of the court.