[2021]_IEHC_655 — [2021]_IEHC_655 — Ireland courts

THE HIGH COURT WARDS OF COURT [2021] IEHC 655 [WOC Ref: 10625] IN THE MATTER OF J.J. RESPONDENT

JUDGMENT of Ms. Justice Irvine, President of the High Court, delivered the 18th day of November, 2020

1. Before I begin, it must be stressed that the application heard by this court in recent

months could hardly be more important. It concerns not only the life and wellbeing of a most

precious eleven year old boy, who I will refer to as John to protect his identity, but the bond of

immense love that binds him to his devoted parents and siblings. I have prepared a separate

judgment for John’s parents where I refer to John by his true name.

2. A little over four months ago, John was involved in a desperately tragic accident that

has left him with severe neurological injuries. However, because the accident itself is not of

importance to the decision which I have to make, I do not intend to refer to it in any detail lest

by doing so I might reveal John’s identity. Regrettably, a disagreement has arisen between

John’s treating clinicians and his parents regarding what his medical treatment should be in

these circumstances. And, it is this disagreement which has brought the parties before the court.

John’s Injuries

3. Although I will refer in much greater detail to John’s present condition and prognosis

later in this judgment, I will set out briefly John’s injuries to establish the background to the

application. After the accident, John was initially taken by ambulance to a regional hospital

where he was found to be unresponsive with a Glasgow Coma Scale of 3/15. Later that day he

was transferred to hospital A (“the hospital”) where he remains under the care Dr F., consultant paediatrician and his team. Dr F. is the clinical director of the department of intensive care at

the hospital.

4. Imaging carried out following the accident revealed that John had sustained the

following injuries:-

(i) A right subdural haematoma with significant brain swelling;

(ii) a fractured left clavicle;

(iii) multiple rib fractures (1st – 5th ribs);

(iv) a fractured right humerus;

(v) pulmonary contusions and pulmonary haemorrhage;

(vi) a Grade 1 splenic laceration;

(vii) fractured pubic rami, and

(viii) maxillary fractures.

5. Because of his brain injury, the neurosurgical team concluded John would not benefit

from surgical intervention. However, neuroprotective measures were continued in an attempt

to reduce brain swelling. An MRI scan carried out on the brain showed devastating findings.

In the days subsequent to his admission to the hospital, John sustained a further bleed into the

brain. A subsequent MRI carried out on 8th September, 2020, showed no improvement.

6. Efforts made to extubate John on 7th July, 2020 proved unsuccessful with the result that

he was re-intubated within fifteen minutes of the removal of his breathing tube. This was

necessitated because of respiratory distress compounded by a condition called dystonia. I will

return later to discuss, in much greater detail, the evidence heard by the court as to the effect

that this condition has had on John’s life to date and how it is likely to affect him into the future.

Suffice for the moment to say that dystonia is a movement disorder in which, when it is not

fully controlled by medication, causes John’s muscles to contract uncontrollably causing

jerking and twisting movements. According to John’s clinicians his dystonia is currently

2 “hiding” since brought under control after a period of approximately eight weeks during which

he had cruelly painful abnormal jerking movements of all four limbs. As will be discussed

below, John’s clinicians are very concerned that his dystonia will become deregulated in the

future in circumstances which will be expanded upon later in this judgment and that whilst

uncontrolled, he will experience great pain.

7. John remained intubated until 29th July, 2020 when he was successfully extubated. And,

whilst this must have given great hope to his parents, John has remained in a state of disordered

consciousness. He is fed by a nasogastric tube and he has a long-term catheter in situ to

facilitate delivery of medications. At times his lungs need to be suctioned to remove secretions.

He also has a urinary catheter and is doubly incontinent. John will never be able to walk or

move any of his limbs purposefully. It may be possible in the future to hoist John into a seat or

even a wheelchair subject to his being strapped in at the waist, chest and possibly the head. A

recent examination shows that he cannot see. He will never be able to talk. According to the

clinicians in whose care he has been for well over three months, John does not respond to voice,

follow commands or acknowledge his surroundings, albeit that both of his parents believe that

he recognises their voices and that his eyes do latch on to them. Neither does he outwardly

show signs of experiencing pleasure. John is presently in a semi vegetative state and whilst it

is possible that he might move into what is described by his doctors as a minimally conscious

state, any such improvement would, according to John’s clinicians, afford him no improvement

in terms of his quality of life or ability to communicate.

8. The court was told that John, whose body is becoming deconditioned due to inactivity

is at real risk of developing pneumonia as the winter weather takes hold. Amongst many other

risks which could cause him to suffer a respiratory crisis are viral or bacterial pneumonia and

Covid-19. And, in the event of a substantial decline in John’s condition, it will only be possible

to keep him alive by admitting him to the intensive care unit (ICU) where he will be subjected

3 to aggressive interventions which, if successful, will cause him further injury and pain, will

cause his dystonia to re-emerge and expose him to significant pain and distress until such time

as it may be brought under control. This might take days, weeks or months added to which his

health, following his initial recovery, will be on a weaker trajectory than that which it had been

on prior to the commencement of invasive measures.

The Relief Sought

9. In light of his present condition, John’s clinicians believe that it is not in his best

interests to be subjected to invasive measures in an ICU and that his condition should now be

managed within the hospital on a children’s ward or possibly in a hospice setting. They

consider that John should receive all medication necessary to control his dystonia and to

alleviate his suffering as much as possible. His clinicians also believe that if his condition

deteriorates due to sepsis or respiratory compromise, he should have physiotherapy and

antibiotics if deemed appropriate and, importantly, that if his dystonia escalates, he should

receive increased pain-killing medication, even if that medication might cause respiratory

depression. The relief claimed by the hospital is set out in detail at para. 4 of the Notice of

Motion dated 28th August, 2020:-

“4. An order permitting the Clinical Director of Children’s Health Ireland and the

medical and nursing staff of [the hospital] to carry out such medical and nursing and

ancillary treatment of the minor as they consider in the exercise of their clinical

judgment to be appropriate and in the best health and welfare interests of the minor,

including but not limited to:

(i) permitting the administration of such medication, sedation or anaesthesia to the

minor by subcutaneous, buccal or enteral routes for the primary goal of treating

severe breakthrough or terminal neurological symptoms even though the doses

4 required to alleviate the minor’s suffering may have a secondary or terminating

effect on the minor’s respiratory function;

(ii) permitting respiratory suctioning only when it is apparent to the treating nurses

or clinicians that secretions are causing distress to the minor;

(iii) permitting the insertion and reinsertion of nasogastric (NG) and/or peripherally

inserted central catheter (PICC) and/or via gastrostomy (PEG) insertion for the

delivery of feed or medications targeted at making the minor comfortable and/or

alleviating distress to the minor;

(iv) permitting the insertion and reinsertion of urinary catheter and ensuring urinary

output;

(v) permitting the administration of such medication to alleviate the minor’s

constipation;

(vi) permitting the taking of swabs and the extraction of blood for testing;

(vii) permitting delivery of oxygen via nasal prongs, cannula or mask targeted at

making the minor more comfortable and/or alleviating distress to the minor;

(viii) permitting the taking of necessary x-rays, scans, ultrasound, CT, MRI or other

radiological imaging thought necessary and appropriate in the minor’s best

medical and welfare interests;

(ix) withholding life prolonging treatments or supports that are not considered to be

in the best welfare or medical interests of the minor including:

 the administration of high-flow oxygen, continuous positive airway

pressure or bi-phasic positive airway pressure supports;

 rescue breaths delivered via bag or mask resuscitation;

 intubation for the purpose of invasive mechanical ventilation;

 mechanical ventilation;

5  inotropes for blood pressure instability;

 cardiac compression for insufficient cardiac output or medical or electrical

cardio diversion for cardiac arrhythmia;

 invasive access including intraosseous and central venous access devices,

or peripheral intravenous access save those permitted at (i) and (iii) above;

 intravenous fluid replacement;

 the readmission of the minor to an intensive care unit.”

10. John’s clinicians have explained to his parents what they believe is in their son’s best

interests. They have sought their consent to adopt the palliative regime mentioned in the last

preceding paragraph so that, if necessary, they can give John a subcutaneous infusion in order

to reduce his pain without concern that, if such intervention was to trigger respiratory distress,

they would be forced to respond by deploying aggressive invasive measures such as artificial

ventilation and cardiopulmonary resuscitation (“CPR”). And, if John’s condition deteriorates

to the point that, to save his life, interventions of this type would be required, they believe that

it is in John’s best interests that these interventions should be withheld. In particular, they want

the discretion to withhold, amongst other treatments, endotracheal intubation and the delivery

of positive pressure ventilation or oxygen.

11. From the time he was extubated and up until 29th September, 2020, John’s dystonia was

not under control. And, it is undoubtedly the case that the pain associated with John’s dystonia

influenced the urgency adopted by the hospital in bringing forward this application.

Furthermore, as will later become clear, John’s dystonia clearly influenced the manner in which

the application was initially heard by this court when it first heard evidence on 15th and 16th

September last. The application proceeded on the basis that it was unlikely that John’s dystonia

would ever be brought under control.

6 12. John’s parents, however, do not take the same view as John’s clinicians and oppose the

application. John’s father remains unconvinced that John experiences pain during a dystonic

episode. And, he believes that John would want to live out his life the best way he could even

if that involved experiencing significant pain. John’s mother, on the other hand, accepts that

John did have pain during dystonic episodes but she told the court how she could soothe that

pain and how she believes the dystonia might be kept under control. She was certain in her

evidence that John would want to receive all treatment that would prolong his life regardless

of its side effects or consequences.

The Proceedings

13. In circumstances where John’s clinicians were not in a position to obtain the consent of

his parents to the managing of his dystonia in the manner proposed and to the withholding of

the life prolonging treatments identified in the Notice of Motion, the hospital issued an

originating summons under O. 65 of the Rules of the Superior Courts to take John into

wardship. In addition, by ex parte application made to this court on 28th August, 2020, I was

asked by the hospital to make a number of orders. Only two of these need to be mentioned. The

first was that I would appoint a guardian ad litem to represent John’s best interests in these

proceedings. I acceded to that application and appointed Mr. Niall McGrath, Solicitor of

MacCarthy and Associates, to be John’s guardian ad litem. The second order sought was to

give directions concerning a motion which the hospital was anxious to have determined with

some urgency. I directed that the proposed motion would be returned before the court for

further directions on 2nd September, 2020.

14. On the aforementioned return date, I was pleased to see that John’s parents, who

separated from each other in 2017, were both in attendance and represented by solicitor and

counsel. Present also was Mr. McGrath who indicated to the court that he was in the process

7 of trying to get his own independent medical opinion, hopefully from a paediatric neurologist,

who might advise him as to what he/she considered would be in John’s best interests having

regard to the application before the court. In circumstances where the guardian ad litem was,

with the support of John’s parents, in the process of obtaining such a report, I indicated that I

did not consider it necessary, at that point, to myself seek an independent report concerning

John’s best interests.

15. At that time the following evidence had been served by the hospital:-

(i) the affidavit of Dr F., consultant paediatrician at the hospital, which exhibited a

report dated 14th August, 2020 signed by Dr F. and the five consultant

paediatricians charged with John’s care;

(ii) the medical social work report of 17th August, 2020 expressing the concerns of

John’s medical social workers, A. C. and A. M. J.;

(iii) the report of Dr W., consultant paediatric intensivist at hospital B, that report

(dated 27th August, 2020), having been obtained by the hospital as an independent

second opinion concerning the best interests of John;

(iv) the affidavit of Dr M., consultant in paediatric palliative medicine at the hospital;

and,

(v) the affidavit and report of Dr G., consultant paediatric neurologist at the hospital.

16. Immediately following upon the directions hearing, Mr. McGrath visited John in

hospital and met with his parents so that he might understand what they considered was in his

best interests. Having done so, Mr. McGrath swore what can only be described as a most

comprehensive affidavit on 4th September, 2020 detailing his engagement with John’s parents.

17. In his affidavit, Mr. McGrath helpfully explained John’s mother’s belief that his

dystonic movements might not be evidence of pain but rather might be voluntary movements

evidencing some recovery. He also relayed her belief that John might emerge from his present

8 condition and commence the process of relearning. Mr. McGrath further reported that John’s

mother was anxious that not only would a further medical opinion be obtained but that a further

brain scan would be undertaken to identify any possible improvement in his condition. In his

affidavit, he told the court that John’s mother found it hard to accept that John might not wake

up at some point in the future and that “to take him away now” would be murder.

18. Mr. McGrath was successful in obtaining a report from Dr L., consultant paediatric

neurologist in hospital C. That report is dated 9th September, 2020, and once received, was

circulated to all parties. In light of the fact that there was no conflict in the medical evidence

and John’s parents did not themselves indicate that they would adduce any medical evidence

on the hearing of the hospital’s motion, I did not consider it appropriate for the court to seek

its own independent medical advice as to what would be in John’s best interests.

19. The evidence already mentioned was later supplemented with an ophthalmic report

prepared by Ms. C., consultant ophthalmologist, dated 16th September, 2020, a copy of the

nursing records from 27th June, 2020 to 1st September, 2020 and a copy of the chart noting

John’s dystonic episodes from 8th to 15th September, 2020 inclusive.

20. Accordingly, with the agreement of the parties, the hospital’s application was listed for

hearing on 15th September, 2020.

21. On 15th and 16th September, 2020, I heard the evidence adduced by the hospital and

John’s guardian ad litem and evidence given by John’s parents. Later, having heard legal

submissions from the parties, I indicated that I would deliver judgment on 9th October, 2020.

22. Judgment was not delivered as planned in circumstances where on the morning of 9th

October, 2020 the court’s attention was drawn to the content of three medical reports prepared

the previous day by those who are principally responsible for John’s care. These reports

highlighted that there had been a significant improvement in John’s dystonia since the case had

concluded. Given the hospital’s reliance upon the fact that it was unlikely that John’s dystonia

9 would ever be brought under control in support of its application, I considered it important that

the court would hear further evidence regarding John’s dystonia and his likely prognosis in

terms of pain in light of his improvement. In particular, I considered it vital that John’s parents

and his guardian ad litem would have an opportunity to further interrogate his clinicians on this

issue. I directed that I would hear further evidence on Wednesday, 14th October, 2020. I also

heard supplemental submissions on 21st October, 2020.

Miscellaneous Matters

23. Before dealing with the substance of the present application, two matters should be

noted. First, on the opening of the application on 15th September, counsel for the hospital, Mr.

Dignam, S.C., made clear that included in the treatments that the hospital would continue to

deliver to John in the event of the court granting the relief sought would be the administration

of antibiotics and the delivery of physiotherapy, if and when required.

24. The second matter that I would wish to record is that prior to the commencement of the

first hearing, I indicated to John’s parents that in other cases of this type, the presiding judge

had visited the patient at the heart of the proceedings and that if they wanted me to adopt this

approach, I would be happy to do so. However, I also indicated that I had given the matter

some consideration myself and I felt for a number of reasons that such a visit could not really

add anything to the proceedings. I indicated that I was concerned about the risk of bringing

infection into the hospital having regard to Covid-19. More importantly, having no medical

knowledge and in circumstances where I would not be entitled to bring anything that I saw

concerning John’s condition to bear on my judgment, my instinct was not to attend. And, it

would seem that John’s parents must have agreed with my own view in circumstances where

they indicated that they were not anxious for me to visit John.

10 The Evidence

25. Because of the enormity of the decision that I must make for all concerned with this

application, I believe it is important that I set out relatively extensively the evidence upon which

I have relied in reaching my conclusions. Because of the change in John’s circumstances which

occurred after the court had first heard this application on 15th and 16th September last, I think

it best to summarise, by reference to the individual clinicians, the evidence given at that time

regarding John’s dystonia. I have decided to take this approach because John’s dystonia has

not gone away. It is in hiding and highly likely to re-emerge and cause John immense distress.

The only question is when and in what circumstances this will happen and how long it will take

to get it back under control. Having done that, I will then summarise the evidence given by the

same clinicians on 14th October 2020.

Dystonia: Evidence Given on 15th and 16th September

26. As briefly mentioned above, dystonia is a condition that causes involuntary and

prolonged contraction of muscles, in John’s case of all four limbs, which in turn causes pain to

the sufferer. It is often caused by trauma to the brain, in particular the basal ganglia, which then

sends out abnormal electrical signals to the muscles.

27. Concerning John’s dystonia, Dr F. told the court that cumulatively on any given day,

John was experiencing dystonic episodes that might last for anywhere between three and five

hours. The nursing records, which he stated would give a clearer picture, showed that for the

period of 8th to 15th September, 2020 that on the best of these days, John endured dystonic

episodes which cumulatively lasted in excess of two hours and on the worst day, in excess of

seven hours. Of particular note is the fact that twelve of the episodes that week lasted longer

than an hour.

11 28. Dr F. explained how John’s dystonia was triggered by a range of factors particularly

those which made him feel uncomfortable. These included noise, urinary retention, defecation,

the presence of a wet or dirty nappy, washing, repositioning and the delivery of medical

intervention. Other times it occurred without disruption or disturbance.

29. Dr M. explained that for many patients, dystonia may only involve one area of the body

but for John it affects all four limbs such that they go stiff and remain tense for long periods of

time causing him to distort his body despite very high doses of background medication. The

pain from dystonia itself can then cause further dystonia and this may lead to what is referred

to as a dystonic crisis. John had already experienced one life-threatening dystonic event.

30. The clinicians responsible for John’s care and the two independent experts who gave

evidence to the court i.e. Dr W., paediatric intensivist, from hospital B and Dr L., consultant

neurologist, from hospital C, were all in agreement concerning the severity of John’s dystonia

and the distress it was causing him. They explained that John’s distress could objectively be

ascertained. When experiencing a dystonic episode John’s heartrate would escalate, he would

sweat profusely and his creatinine kinase (“CK”) enzyme would rise, the latter being an

indication of muscle breakdown. Describing the severity of his dystonia in the eight week

period, leading up to the hearing Dr M. stated that she thought John’s dystonia was very painful

and distressing for him. She told the court that she had looked after children with far less severe

dystonia than John’s and the continual message from those children who could speak, and

indeed from adults in similar circumstances, was to cry “help me. I’m in pain … Why can’t you

do more”.

31. Influenced by his experience of dystonia in awake patients who reported how

distressing the symptoms are, and having regard to the objective signs already mentioned, Dr

F. was satisfied that John was suffering pain and he told how it was difficult for him and for

other doctors and nurses to watch John experience such pain. It was the frequency and severity

12 of his dystonia and the foreseeability of his deterioration that made John’s burden different

from any other case of this type.

32. Dr W. told the court that in her nine-year period in Great Ormond Street Hospital, she

had cared for between 100 and 150 children per year who suffered from neurological dystonia

and that, with one exception, John’s case was the worst she had ever seen. She was certain that

John was bearing a terrible burden as a result of his dystonia and she described how even in

response to her strange voice, his heartrate went up and his dystonia became more severe. Dr

W. also explained how any illness makes dystonia significantly worse and, giving an example,

she explained how even well-controlled dystonia goes “off the charts” when the patient has

something as benign as a head cold. She also told the court that while driving over to examine

John she found herself wondering why the hospital was asking the court to intervene quite so

soon after his accident. However, having examined John, she considered the approach of the

hospital to be absolutely warranted in light of the severity of his dystonia.

33. Regarding efforts to control John’s dystonia, a number of clinicians described the

manner in which the dystonic episodes were treated. If a dystonic event did not settle in fifteen

minutes, treatment would commence. If it continued for a further fifteen minutes, a second

level of medication would be introduced and the same thing would happen after 45 minutes

when additional drugs would be introduced. At 60 minutes, John would receive a subcutaneous

bolus injection. If he had a dystonic crisis, that could only be managed by inducing sedation

and sleep. The difficulty with sedation, according to John’s clinicians, is that whilst it reduces

pain, it can cause a reduction or an inefficiency in his breathing. This in turn might precipitate

a respiratory collapse which would require the very type of interventions that the hospital

considers are not in John’s best interests. And, the evidence was universal and clear that the

interventions that would take place in intensive care would, because of their severity, ultimately

make his dystonia more severe and harder to control.

13 34. Concerning the ability of the clinicians to control John’s pain, the hospital pointed to

one dystonic episode which had lasted for 2 hours and 55 minutes before it was brought under

control. They referred to the fact that John had developed a high tolerance to medication over

time and they felt there was no guarantee that they would be in a position to maintain the status

quo. The clinicians explained how patients tend to become resistant to treatment. Prof. D. was

clear in his evidence that intervention in intensive care would certainly deregulate the control

of John’s dystonia for a period and there could be no guarantee that his current drugs would

work again.

35. Dr G. described John as being in a cycle of pain in which dystonia is triggered by a

noxious stimulus and then the pain from the dystonia itself causes further dystonia and,

consequently, further pain.

36. In light of evidence of this nature concerning John’s pain it is perhaps not surprising

that when they first gave evidence on this application, John’s clinicians told the court that they

felt that their primary goal should be to make him as comfortable as they can whilst recognising

that such an approach could impact on his respiratory status. They did not believe that they

should hold back on pain killing medication and let John remain in dystonic distress because

he did not have a voice to explain how intolerable his pain was. They explained why there was

justification for increasing his medication in order to reduce his suffering, even if such an

approach could lead to respiratory compromise or a terminal event. All accepted that an

increase in medication had the potential to suppress John’s ability to cough and his ability to

remove secretions from his airways and that these events could threaten his life absent ICU

interventions. And, John’s clinicians were adamant that should any crisis arise which John

might not survive without invasive measures that he should not be taken to ICU to receive

them.

14 Supplemental Evidence Regarding John’s Dystonia Heard on 14th October, 2020

37. When the court resumed to hear additional evidence on 14th October, 2020, six

additional reports were admitted into evidence. Three of these were from John’s treating

clinicians, namely Drs G. and F. and Prof. D. The others were from Dr L., the consultant

neurologist retained by the guardian ad litem and the final two prepared by the nursing staff

responsible for John’s care.

38. In their reports, Dr G., Dr F. and Prof. D. made clear that there had been a significant

improvement in the severity of John’s dystonia since 29th September last. His symptoms were

responding to the combined effects of a number of drugs including Clonazepam, a

benzodiazepine. The dosage of this drug had been increased slowly over seven days and it was

this change that was considered responsible for bringing John’s dystonia under control. Prior

to 29th September, 2020, John had required rescue medications often multiple times per day to

terminate prolonged episodes of dystonia. However, since 29th September, John’s dystonia had

not been interfering with his activities of daily living. He could be dressed, toileted and bathed

without these activities producing spasms or obvious pain.

39. Notwithstanding this very positive and welcome improvement, which ran counter to

their expectations as earlier expressed, John’s clinicians were uncertain as to how long his

dystonia might remain controlled.

40. Importantly, the clinicians were certain and unanimous concerning two matters. First,

that it was inevitable that John’s health would become critical to the point that without the

delivery of aggressive invasive measures in ICU he would die and that, if this happened, it

would not be in John’s best interests that invasive measures be used to extend his life. Second,

there remained a possibility that John’s dystonia would become deregulated and his symptoms

so severe that they could only be controlled by medication delivered at a level and in a manner

which carried the risk of depressing his respiratory reserves thus potentially placing his life at

15 risk. Again, the clinicians were unanimous in their opinion that, in such circumstances, it would

be in John’s best interests that he would receive the painkilling medication required and that if

this caused respiratory compromise invasive measures should be withheld.

41. Of particular importance was the evidence given by each of the clinicians that the

deployment of invasive measures in an ICU setting would cause John pain that would

destabilise his dystonia, and that it could take days, weeks or months to bring it back under

control only to have the whole cycle – crisis, followed by invasive measures, followed by pain,

followed by deregulated dystonia, followed by poorer health – repeat itself until such time as

John might succumb.

42. Besides their providing their expert reports, which were admitted into evidence by

agreement, the clinicians also gave oral evidence.

Dr F.

43. Dr F. explained that it was uncertain as to how long the present alleviation of John’s

dystonic symptoms might last. He explained that patients become intolerant to medications and

if this was to happen his symptoms would re-emerge. Inflammation from an infection, the onset

of any type of pain or the introduction of antibiotics to treat an infection could also interfere

with the control of John’s dystonia. As a matter of certainty, invasive measures in ICU would

provoke a dystonic crisis but so also could less extreme events. Furthermore, outside of the

setting of ICU, medications which carried the risk of respiratory or cardiac suppression might

be needed to reduce the pain caused by John’s dystonia.

44. In the event of a crisis where John’s life could not be sustained without invasive

measures such as respiratory or cardiovascular support or resuscitation, Dr F. stated that it was

not in his best interests to receive such treatment. Such measures would not only be distressing

but they would cause the deregulation of John’s dystonia thereby subjecting him to significant

16 pain. Furthermore, the effect of pursuing that approach would be to take John away from his

family him for a purpose that, according to his clinicians, would bring him no personal benefit.

Dr F. accepted that the pain caused by John’s dystonia was a significant element in the

hospital’s concerns when the application was first brought to the court, but it was not the only

reason for the hospital’s concern. Because John had had two months of dystonia meant there

was a strong likelihood that it would recur and that this could happen “this evening, tomorrow

or in a month or six months’ time”. It was necessary to plan for such contingencies and remove

the possibility that urgent decisions regarding life-saving measures would be made in an

intensive care setting.

Dr G.

45. Dr G. stated that while it was excellent news that John’s dystonia was currently well-

controlled, that position was likely to change. She explained how sometimes medications stop

working and patients become immune to drugs and that dystonia can be triggered by infection,

discomfort, or even a sore tooth. Importantly, Dr G. advised that it is because invasive measures

are painful that they trigger dystonia and the problem is that when dystonic pain re-emerges

you simply cannot attack it and take it away. Medication has to be increased slowly for fear of

causing respiratory collapse.

46. Because of what is shown on John’s MRI brain scan, the fact that he had already

experienced one dystonic crisis and it had taken so long to bring his symptoms under control,

Dr G. was 80% – 90% certain that his dystonia will re-emerge. And, when it does, it might take

days, weeks or months to get it back under control. This is because the process involves

switching drugs and changing dosages. Regrettably, during all of that time John would

experience very significant distress.

17 47. Dr G. nonetheless agreed that John’s long-term response to Clonazepam would only

become clear with the passage of time and that if he was to get long periods of remission from

his dystonia, it would certainly improve his quality of life and make his daily functioning easier.

In response to counsel’s suggestion that it was too early to know what John’s baseline would

be in terms of dystonia and that it was possible that he might get a long period symptom free,

Dr G. agreed that it was possible that he might get a lengthy period symptom-free but

considered it very unlikely. She gave three reasons to support her opinion. First, she stated that

John’s prolonged period of poor dystonia control was a bad prognosticator. Second, because

his dystonia is triggered by infection, and John has multiple risk factors for developing

infection, he was at high risk of early recurrence. Finally, Dr G. relied upon the fact that John’s

dystonia is triggered by any type of pain, such as that caused by constipation, urinary tract

infection, bed sores, pain in a joint etc, all of which were ongoing everyday live risks for John.

48. Dr G. told the court that the fact that John’s symptoms from dystonia had been brought

under control should not be seen as an improvement in his overall condition. It was simply that

his drugs were keeping his symptoms at bay. His general condition remained the same. And,

to demonstrate her point she referred to the fact that John still does not interact with his

environment. He does not smile or cry in response to something appropriate and could not, for

example, enjoy a cartoon.

49. As to whether the application was warranted having regard to the significant change in

John’s dystonia, Dr G. stated that as far she was concerned the same level of urgency pertained.

Her opinion was that the whole situation could change very quickly, over a period of hours or

days.

18 Dr L.

50. Dr L., stated that there had been no overall change in John’s condition, save for the

suppression of the dystonia. The fact that because his dystonia was suppressed he might in the

future be able to be held in a chair in a seated position should not be interpreted as a sign of

any clinical improvement. His motor function would remain the same even if the fact that he

could sit in a chair might help with this care. Being able to be seated for a period might help

John avoid developing pressure points and could assist with his bowel function. As for the

possibility of John using a wheelchair, again that was not any indication of improvement. The

wheelchair would only be a means whereby others might move him about and Dr L. cautioned

about the use of a wheelchair in circumstances where almost any stimulation risked triggering

John’s dystonia.

51. Dr L. stated that it was not too early to put a plan in place for what should happen if

John was to meet with a medical crisis or his dystonia was to go out of control. While his

medical situation was less precarious than before all, if any single step in his daily care was

neglected or missed, his health was at risk of deteriorating. She stressed that every single aspect

of every single minute of his day had to be managed because John could do nothing for himself.

He was not able to communicate or even move voluntarily. So, while the abnormal electrical

signals are currently being suppressed by Clonazepam, they are likely to re-emerge because

the injury and therefore the dystonia are still there. Dr L. told the court that it was dangerous

to assume that just because John's dystonia had been brought under control once that this could

be done again. And, the fact that it had been brought under control once was not necessarily a

positive indicator.

19 Dr W.

52. Dr W. agreed that the application could not be viewed as being as urgent as it was when

it had first come before the court, but she stated that there was no knowing when John might

get an intercurrent illness. Due to his deconditioning John was likely to require early ICU

intervention. And, experience suggests that once that process commences the incidents which

require the use of invasive measures to sustain the patient tend to become more frequent and

the crises more aggressive. According to Dr W., ICU type invasive measures would not be

without a cost to John. When asked if it would not be better to wait to see what John’s baseline

might be before bringing an application such as this, she pointed to the concern that if John

was to get a dystonic crisis following a snuffle or cold, without court intervention, it would be

likely that he would have to be put through the full gamut of ICU interventions.

53. Dr W. agreed that the benefit of having a plan in place was that it would ensure that

interventions were not delivered that were contrary to John’s best interest. And, if John was

her patient she would not think it was in his best interests to receive invasive measures only to

be returned first, to a period of significant pain from his dystonia which would become

deregulated and second, to a state of health which would be poorer than that which he enjoyed

before the crisis which had taken him to ICU. The only downside of the present application

was from the family’s point of view as they want him to live for as long as his life can be

sustained using all available interventions.

54. Dr W. stated that she did not consider the fact that John might at some stage sit in a

chair or use a wheelchair, because his dystonia was currently under control, signalled an

improvement in his condition. She nonetheless acknowledged the fact that as John was not

currently in distress had afforded his clinicians an opportunity to acquiesce to the family’s

preference to have more time with John.

20 Prof. D.

55. Prof. D., paediatric intensivist, was of the opinion that the improvement in John’s

dystonia made the likelihood of an imminent cardio respiratory deterioration or major

aspiration less likely than it had been when the application was first before the court. However,

the fact that his dystonia was under control did not affect his analysis of how John would come

out of an episode if readmitted to ICU. He stated that presently John is as well as he will ever

be and that being so the hospital had an opportunity to try to put a plan in place to provide for

what should happen if, for example, John was to develop a crisis as a result of picking up

Covid-19.

56. Whilst he is no longer part of John’s clinical team, Prof. D. explained that when he

signed the first medical report in this case, the team anticipated that John would hit a crisis and

end up back in ICU as early as September 2020. However, the deconditioning of John’s

condition which was expected at the time the application was first made will now take more

time to evolve given that he can benefit from physiotherapy. Prof. D. also stated that he

probably would not have signed that first report if John had been in his present condition at

that time. Nonetheless, he explained that it is better to have a plan in place because without it,

decisions are often made in the throes of a crisis that are difficult to unwind.

57. Prof. D. stated that even if the order sought by the hospital was to be made, the hospital

would not shutdown dialogue with John's family. And, his understanding of the order sought

is that it would not oblige the clinicians to withhold invasive measures if they considered they

were in John’s best interests in any given set of circumstances. If there was profound

disagreement the doctors would have to call it as to what they considered was in John’s best

interests.

58. Prof. D. confirmed that if John was to present to ICU that evening, i.e. the 14th October

2020, it would not be in his best interests for his clinicians to initiate CPR. And, clarity

21 surrounding whether or not invasive measures had to be deployed was essential if there was to

be any prospect of discharging John back to a regional hospital close to his home. Those

hospitals have little experience of paediatric critical illness and, in the absence of clarity,

decisions might be made that were not in John's best interests. Such hospitals have no paediatric

neurosurgery department or paediatric intensive-care. If a crisis arose they would have to

initiate a chain of events to have John taken back to a specialist hospital such as that where he

is currently receiving treatment.

Dr M.

59. In explaining John's present condition, Dr M. described his dystonia as having been

dialled down and his symptom burden as having been reduced since she had first given

evidence. However, the control over John’s dystonia had not, in her view, changed the benefit-

burden analysis that would be required at the point when John might either need invasive

measures to keep him alive or require medication to deal with pain caused by a dystonic crisis.

She explained that when she used the word “burden” in this context she was referring to the

consequences of CPR if invasive measures were required or the pain that John would

experience as a result of withholding medication in the event of a dystonic crisis. It was her

opinion that the ICU interventions would not bring John sufficient benefit to counter the

significant burden that they would impose. And, if required, invasive measures would be no

less burdensome than if they had been required a month ago. Neither the burden nor the benefit

attached to either decision had changed. Accordingly, the purpose of putting the plan in place

had not changed, even if John’s symptoms had improved.

60. Dr M. also confirmed that John’s treating clinicians had fully discussed this case

subsequent to his improvement and they remained strongly of the belief that a personalised

22 plan for John needed to be put in place because an agreement cannot be reached with his

parents. And, there was no dissent concerning the hospital’s current approach.

61. Dr M. strongly disagreed that it was too early for the hospital to bring this application.

She said that the hospital had had enough time to fully evaluate John’s condition and prognosis.

John’s clinicians know and understand the impact that his brain injury is going to have on him

for the remainder of his life. She stated that there was not a specific length of time that a child

should have to wait before good decisions were made in respect of any aspect of their life. It

was Dr M.’s opinion that John should not be exposed to further ICU interventions. In response

to a suggestion that the hospital should wait and see how John’s condition might progress over

the longer term, which might include another period in ICU, Dr M. stated that it should not be

the case that a patient should have to endure a number of ICU admissions before they had a

right not to have them. She pointed to the fact that most people in the world die and never go

to ICU. They are allowed to die a natural death. And, the frequency with which John might

need to go to ICU should not be allowed to determine the appropriateness of withholding the

interventions, because it was the awfulness of the interventions that must be the determining

factor. Furthermore, the hospital in this case had had a much longer time to try to reach

agreement with John’s family than in many other cases. And, that lack of success exposed John

to a risk of pain and distress that he should never have to bear.

62. As far as Dr M. was concerned the hospital had to be allowed to use enough medication

to give John symptom relief in the event of a dystonic crisis, even if a secondary consequence

might be that the medication might depress his respiratory reserves. And, the hospital was

committed to trying to avoid such secondary consequences. It was important that clinicians did

not avoid treating John’s distressing symptoms because they were afraid of causing that effect.

The primary goal had to be to make the patient comfortable.

23 63. Dr M. explained that there are circumstances in which it will not be in the best interests

of a patient to interfere with what she described as a natural death. Sometimes invasive

measures offer the promise of an improved quality-of-life or an ability to live well in the future.

But there are other times when invasive measures do no more than prolong and sustain life

without wellness and without quality. And this was such a case. Dr M. emphasised that even if

the order sought was to be granted the hospital was committed to doing everything possible

keep John’s condition stable and keep him well and alive for as long as possible. The fact that

the clinicians might, for example, want liberty to withhold drilling into John’s bone marrow to

deliver antibiotics, did not mean that it would not proceed to give those antibiotics by other,

less invasive means.

64. Finally, it would be remiss not to report Dr L.’s evidence concerning the devotion of

John's parents, particularly his mother, and also his siblings when she stated concerning their

care, that “[John] couldn’t be more loved” and “he couldn’t be more beautifully cared for”.

Condition and Prognosis

65. Whilst there exists no standardised paediatric test by which John can be stated to be in

a persistent vegetative state or a minimally conscious state, Dr G. described him as being

somewhere in between, but considered that his current presentation was more in keeping with

a persistent vegetative state. She said those in a minimally conscious state will have clearly

discernible behavioural evidence of awareness of self or environment and she did not consider

John to have either. He has no language or words. He does not grunt or deliver a yes/no

expression. John does not, she observed, fix or follow with his eyes and this had been confirmed

by his recent ophthalmology assessment and the report of Ms. C.

24 66. According to Dr G., whilst it was too early to say definitively where John would end

up in terms of his long-term prognosis, at best he might achieve a minimally conscious state

but the likelihood was he would remain in a persistent vegetative state.

67. Relying upon MRI scanning, Dr L. concluded that John has lost so much brain tissue

that whilst it was possible his condition could evolve into one which might be described as a

minimally conscious state, her opinion was that he would remain in a persistent vegetative

state.

68. Dr L. went on to explain to the court the limitations for John in terms of his future life.

She told the court that John was not going to walk, and he was not going to talk. She explained

that John would not develop any meaningful awareness of his surroundings and that he would

be profoundly and severely neurologically disabled for the rest of his life. She said that John

will never be able to communicate how he is feeling and that he will never be able to perform

any voluntary movements. According to Dr L., John will probably never be able to process any

information given to him to enable him to communicate back to his parents or anyone else.

69. Concerning the quality of and meaningfulness of John’s future life, Dr L. observed

rather poignantly: “I think what gives anybody’s life meaning is their ability to interact with

their surroundings and their ability to feel happiness and love. Currently we know that [John]

feels pain and we don’t know of anything else”.

70. Prof. D. also expressed the view that John would remain in a persistent vegetative state

and would never be better than minimally conscious. And, he told the court how his body will

start deconditioning over the next while. John’s cardiac respiratory reserves will diminish week

on week and year on year. Because he is not mobile his musculature and strength will decline,

and John will have increased difficulty in clearing his secretions. He will become prone to

aspirating his food and this will place him at risk of pneumonia and a need for intervention

measures of the type mentioned at para. 4 (ix) of the Notice of Motion.

25 71. In support of John’s mother’s earnest plea that the court would refuse the present

application so that John could be given more time to improve, counsel put to each clinician that

there was some degree of uncertainty about the extent to which John might recover from his

injuries. Counsel placed emphasis on what she described as an improvement in John’s Glasgow

Coma Scale reading and a reported reduction in his CK enzyme. The clinicians’ attentions were

drawn to the fact that John’s mother and father both believe that he turns his eyes towards them

when hearing their voice and that he can suddenly become calm when he hears his brother’s

voice. Emphasis was placed upon the enormous improvement in the control of John’s dystonia

which had been achieved between 15th September and 14th October, 2020. Counsel also relied

upon the fact that there were also plans underway to try to seat him in a chair and splint his

limbs. Based upon these signs it was suggested that the level of recovery that John might

achieve, if given sufficient time, remained uncertain and that it was simply too early to withhold

invasive measures that would extend his life.

72. In response, all of the clinicians who gave evidence acknowledged that John had some

sense of awareness, given that he responded to pain. Dr W. gave evidence to the effect that

John’s heart rate rose in response to her unfamiliar voice on the date she attended to examine

him and that his dystonia increased in response to her effort to conduct a physical examination.

Dr M. told the court that she had seen John tear up as a response to distress. All were agreed

that John had to have some sense of awareness of his surroundings and of discomfort given

that his dystonia was triggered by events which caused him discomfort. Nonetheless, they were

united in their view that whatever progress John might make, at best he might attain a

minimally conscious state which would have no beneficial effect in terms of his potential to

enjoy life. His physiological decline was inevitable, according to Prof. D., and all interventions

that might occur in ICU would do no more than put John on a worse trajectory than he is already

on. According to Dr G., to give John more time within which his consciousness might increase

26 into a minimally conscious state would be to make him more aware of pain and that pain would

then trigger more dystonia; she said: “the more you are aware of your surroundings the more

you can feel pain. The more pain the more impact on the quality of life”.

Nature of the Interventions the Clinicians Seek Permission to Withhold

73. Relevant to my decision as to what I believe John would consider to be in his best

interests is an understanding of the nature of the interventions which the hospital would wish

to withhold in the event of a crisis. That being so I consider it important to give some small

amount of detail as to what some of these, particularly the invasive measures, entail. These are

set forth at para. 4 (ix) of the hospital’s Notice of Motion.

74. Whilst these interventions are nearly always carried out when the patient is sedated, it

is the damage that would be caused by these interventions in the short and long-term that

principally motivates the present application. It has been explained that in the event of a crisis

it would be usual that the patient would need all of the interventions listed. However, for present

purposes I think it sufficient to briefly focus on the overall impact that these invasive measures

would have, first on John’s condition and prognosis and second on the level of pain that these

measures would cause, assuming he would survive a period of crisis in ICU. Before doing that,

I will briefly refer to one or two of these invasive measures so that the reader can better

understand the severity of the measures which, in practice, would have to be taken to maintain

John’s life in the event of a crisis, without the consent of John’s parents or an order of this

court.

75. Cardiopulmonary Resuscitation (“CPR”), one of the interventions which the clinicians

want to have discretion to withhold, was described graphically by many witnesses. Dr F.

described how the chest is forcefully compressed 60 – 100 times a minute and how he

anticipated this would probably fracture several of John’s ribs apart from causing him severe

27 bruising and contusions. Such injuries, according to Dr F., would leave John in a much greater

state of pain than he would have been in before the crisis and this pain would trigger his

dystonia which, even if it had been stable for some time prior to infection or crisis, would

become destabilised and it might or might not be possible to re-stabilise it. Dr G., amongst

others, stated that CPR would only cause John even greater suffering than he currently endures

and in circumstances where it would deliver no long-term benefit.

76. As for ventilation, Dr L. explained that the process commences with the child being

intubated. This involves the introduction of a metal blade into the throat which has the prospect

of damaging teeth and lacerating the throat. The tube can be misplaced and lead to a collapse

of the lungs. Prof. D. spoke of how being on a ventilator could weaken John’s heart and, if he

survived the crisis, that he would need frequent physiotherapy and suctioning, interventions

which of themselves would increase John’s dystonia. In particular, he explained how these

invasive therapies would not only cause John great distress and potential harm but they would

do nothing to improve his underlying condition. At best they would provide an artificial bridge

to a life in which John would have to endure significant pain and, in all likelihood, place him

on a poorer health trajectory than that which he had been on prior to the intervention. And, he

told of how chronically ill patients are rarely the same at the end of a period on a ventilator.

77. The universal view of the clinicians was that following a period of invasive measures

in ICU, John would be left in a much-depleted condition. The present control over his dystonic

pain will probably be lost if he gets an infection, as all discomfort exacerbates dystonia, allied

to the fact that the necessary change in his medications to fight such an infection will make it

difficult to find a combination that will work successfully. Then, if John was to require CPR,

which would probably cause several rib fractures, his pain would escalate further, and his pain

management would become further deregulated. His present equilibrium would be destabilised.

John’s drug regime would have to be started over and there was no guarantee that the drug

28 regime which worked before his crisis would work again or work as well as it had been working

prior to the crisis. This is, amongst other things, because the pain from the interventions would

significantly exacerbate the dystonia thus requiring increased medication.

78. Important in this regard was Prof. D.’s evidence that he believes that John is likely to

survive the next respiratory or other crisis, particularly if that crisis happens in the near future.

In these circumstances the court must anticipate that John will likely experience a period of

immense pain, probably of several weeks duration, following the use of any invasive measures

with the possibility that such pain may never be brought fully under control. And that cycle

will repeat itself at ever-decreasing intervals for as long as John can be kept alive.

79. As for the circumstances in which the clinicians considered it ethically appropriate to

deliver intensive care to a patient, each stated that they considered that it was the role of the

intensive care physician to treat a patient so as to provide them with a bridge to recovery. In

this respect John’s clinicians were unanimous in their belief that invasive measures should not

be used to artificially prolong life where they would have the result which they will have if

undertaken in the present case.

80. In particular, Dr F. stated that to use intensive care, which in itself is a traumatic process,

to sustain John’s life only to restore him to a condition where he would continue to experience

suffering, distress and pain was ethically unacceptable. Given the choice of sustaining life

versus trying to relieve suffering, the relief of suffering must be prioritised particularly when

John can never make a meaningful recovery and will never be pain free.

81. All clinicians were agreed that in circumstances where John’s parents were insisting

that John should not be given a subcutaneous infusion on a continuous basis which might

reduce his pain because it might precipitate a respiratory crisis, and where they were insisting

that the hospital could not withhold the intensive therapies referred to at para.4 (ix) of the

Notice of Motion if such a crisis were to arise, there was little possibility of John ever being

29 discharged to a regional hospital close to his home, or returning to live with his family. These

would be goals to aim for if the approach proposed by the hospital was accepted by John’s

family. Regrettably, if invasive measures cannot be withheld John would have to stay close to

ICU in a specialist children’s hospital for the rest of his life.

Issues

82. As is evident from all that I have stated thus far, the hospital and John’s parents are at

odds over what is and is not in John’s best interests. However, besides this issue, the dispute

between John’s parents and the hospital has raised a number of additional legal matters that

must be resolved in this judgment.

83. Counsel for John’s mother queries whether the exercise of the court’s wardship

jurisdiction is compatible with the constitutional rights of John’s parents. Second, the court is

asked to consider whether the constitutional prohibition of euthanasia prevents the hospital

from seeking the relief set out in its Notice of Motion, as the orders sought, if granted and acted

upon, may have the effect of shortening John’s life. Third, it is argued that the case law

previously applied to cases of this kind is not applicable in circumstances where the application

has been brought so early in John’s post-accident life and in circumstances where, it is asserted,

John’s prognosis is uncertain. Fourth, it is submitted that the application of the best interest test

provides insufficient protection in this case. Finally, counsel for John’s mother submits that

there is no clear and convincing evidence available to justify the court exercising its

jurisdiction.

84. In addition to adopting the submissions made on behalf of John’s mother, counsel for

John’s father argues that the orders which the hospital seeks are unnecessary and should

therefore not be granted. Counsel contended that the doctors are, in any event, entitled to

30 withhold ICU measures which they consider unethical. Thus, in light of the fact that the orders

sought cannot be shown to be necessary, they should not be granted.

85. I will deal with these arguments in turn.

Can the Wardship Jurisdiction Be Exercised to Override the Wishes of the Parents?

86. In essence, the difficulty that I find myself in in this case is that, on the one hand, I am

asked by John’s parents to give John as long a life as possible in the hope that, in time, his

condition will improve. Understandably, because of their profound love and deep devotion to

John, they want everything that is medically possible to be done to sustain his life, thus

maximising his opportunity for recovery. On the other hand, I am urged by those in charge of

John’s medical care, who have decades of experience between them, to grant the relief sought

as, should a dystonic or other medical crisis present, it would be cruel to either withhold the

subcutaneous medication necessary to bring his pain under control or subject him to invasive

measures in ICU without which he might die. John’s very poor outlook and devastating

injuries, compounded by a strong likelihood that his dystonia will become deregulated in the

event of invasive measures being deployed, must mean that, if a crisis arises, John should be

given whatever medication he needs to bring his pain under control and that his life should not

be artificially extended. In such circumstances, if necessary he should be allowed to die with

dignity and with as little pain and suffering as possible.

87. Ordinarily when a court is confronted with a dispute such as this, the child is taken into

wardship and the court, in consultation with the child’s parents and the child’s treating

clinicians, will determine what is in the child’s best interests. I will go into significantly more

detail as to what is involved in this assessment later in this judgment. However, for the moment

it is sufficient to say that in that scenario the court assesses the medical and family situation of

31 the child and then puts itself into the shoes of the child to determine what he or she would

consider to be in his or her best interest (“the best interest test”).

88. In this case, however, John’s mother and father query whether the best interest test

should be applied. They argue that the court cannot exercise its wardship jurisdiction as to do

so would be an inordinate interference with their rights as parents as guaranteed by the

Constitution. In particular, they maintain that Article 41.1 when taken in conjunction with

Article 42A.2.1 must mean that the State can only interfere in those rare circumstances where

it can be shown that parents have failed in their duty towards their children. In circumstances

where they contend they have not failed in their duties, John’s parents submit that the court

cannot interfere with the decisions they have taken in respect of his care. Thus, they claim that

the court cannot exercise its wardship jurisdiction and must not apply the best interest test.

89. In order to determine whether the court is entitled to exercise its wardship jurisdiction,

I will first discuss the rights which the constitutional provisions relating to the family would

appear to protect, as well as how and to what extent that protection is, in principle, achieved. I

will then review how these considerations have been applied in previous cases where the

medical treatment of children is concerned and how I believe they should be applied to the

facts of this case. Finally, I will consider whether the wardship jurisdiction and the best interest

test can be relied upon on the facts of the present case in light of the constitutional rights of the

parties involved.

Constitutional Family Rights in General

90. Article 41.1 provides as follows:-

“1 1° The State recognises the Family as the natural primary and fundamental unit

group of Society, and as a moral institution possessing inalienable and

imprescriptible rights, antecedent and superior to all positive law.

32 2° The State, therefore, guarantees to protect the Family in its constitution and

authority, as the necessary basis of social order and as indispensable to the

welfare of the Nation and the State.”

91. Article 42A s. 1-2 provide:-

“1 The State recognises and affirms the natural and imprescriptible rights of all

children and shall, as far as practicable, by its laws protect and vindicate those rights.

2 1° In exceptional cases, where the parents, regardless of their marital status, fail

in their duty towards their children to such extent that the safety or welfare of

any of their children is likely to be prejudicially affected, the State as guardian

of the common good shall, by proportionate means as provided by law,

endeavour to supply the place of the parents, but always with due regard for the

natural and imprescriptible rights of the child.

2° Provision shall be made by law for the adoption of any child where the

parents have failed for such a period of time as may be prescribed by law in

their duty towards the child and where the best interests of the child so require.”

92. It is well settled that Article 41.1 guarantees the collective rights of the family as an

institution within society and as a consequence the State is obliged to protect the family unit in

its constitution and authority. In order to fulfil these obligations, the State, in Article 41, agrees

to cede control to the family in certain matters. In Ryan v. Attorney General [1965] I.R. 294,

Kenny J., in the High Court, rejected the argument that the fluoridation of drinking water

constituted a violation of Article 41.1.2° and made the following observation in relation to the

rights which are protected by the provision. At pp. 308-309 he stated:-

“Not one of the counsel in this case has attempted to state what the inalienable and

imprescriptible rights of the Family are and, as the Constitution gives little help on this,

33 I am in some difficulty in dealing with this argument. ‘Inalienable’ means that which

cannot be transferred or given away while ‘imprescriptible’ means that which cannot

be lost by the passage of time or abandoned by non-exercise. […] Some clue to the

ambit of the rights of the family referred to in Article 41 is to be found in sub-s. 2 of

section 1 where there is a reference to a guarantee by the State to protect the family in

its constitution and authority. It seems, therefore, that the rights referred to in section 1,

sub-s. 1, of Article 41 relate to the constitution and authority of the family. It was argued

by the plaintiff's counsel that the addition of the fluoride ion to drinking water affected

the authority of the family to decide what drink and food the members of the family

should consume and that the Act of 1960 was, therefore, an attack on the authority of

the Family. […] In my opinion, legislation dealing with the contents of food or drink

does not in any way affect the authority of the Family and the Act of 1960 is not an

interference with the rights guaranteed to the family by Article 41.”

93. Regarding the rights protected by Article 41.1 of the Constitution, O’Donnell J. recently

remarked as follows at para. 21 of his judgment in Gorry v. Minister for Justice and Equality

[2020] IESC 55:-

“The rights guaranteed by Article 41.1.1 are therefore the correlative of the duties

imposed upon the State by Article 41.1.2 to protect the Family in its constitution and

authority: it is the right to establish a family unit and have an area within which the

Family is in control. That area is not without both horizontal and vertical limits: first,

the freedom of the Family, for example, within areas which might clearly be considered

a family matter, such as decisions on the education of children, in the broadest sense,

is not absolute. The Constitution expressly provides that the State may require basic

standards of education. Similarly, there is a horizontal limit to what is within the

authority of the Family. There are many things that a Family cannot decide or control.

34 There may indeed be significant contention as to where both the vertical and horizontal

boundaries lie in any given case, but the structure of the Constitution is clear: it protects

an area within which the institution of the Family is primarily in control and which is

generally free from government or State interference […]”

94. It follows that one of the questions which I must answer in deciding this case is whether

the decision by John’s parents as to the care and treatment he should receive in the

circumstances outlined in the hospital’s application is, in principle, a family matter that falls

within the ambit of protection afforded by Article 41. Then, if the answer to that question is in

the affirmative, the second question that needs to be answered is how far the protection afforded

by Article 41 actually goes. However, it is clear that the protection afforded to family affairs is

not absolute and, in a case where the decision of parents might adversely affect their child,

there is clearly a tension between the parental rights and the rights of the child. So, whilst on

the one hand the State is under an obligation to respect the family, and by extension the decision

of the parents, on the other hand it is obliged to vindicate and protect the constitutional rights

of every person including the child.

95. But, what is not clear is the point at which the court may interfere to resolve these

competing constitutional rights. Article 41 itself is silent as to where the constitution draws the

line. Given that in Article 41.1.2 the state guarantees to protect the family in its constitution as

well as authority, we are told that this unit must be protected from external forces. What we

are not told is in what circumstances that protection can be lost.

96. What is nonetheless clear is that almost any exercise by parents of their Article 41 rights

have the effect of curtailing, to varying degrees, the rights of the child and that if the courts

were to step in at every turn where it could be shown that the rights of the child were being, or

might in the future be adversely affected, the parental rights would be entirely undermined. It

is for this reason that the courts, in a series of cases, have concluded that the rights of the child

35 must be presumed to be vindicated by the actions or inactions of their parents unless that

presumption can be rebutted.

97. This presumption was first considered in In re J.H. (an infant) [1985] 1 I.R. 375, a case

which concerned the adoption of a child put up for adoption by its mother shortly after birth.

The child’s parents were separated at that time but after four years they married and sought to

resist the adoption of the child by its foster parents. It was accepted, albeit in the context of s.3

of the Guardianship of Infant’s Act 1964, that in deciding whether to allow or refuse the

adoption, the best interests of the child were paramount. At p. 383 Finlay C.J. commented:-

“I would, therefore, accept the contention that in this case s. 3 of the Act of 1964 must

be construed as involving a constitutional presumption that the welfare of the child,

which is defined in s. 2 of the Act in terms identical to those contained in Article 42, s.

1, is to be found within the family, unless the Court is satisfied on the evidence that

there are compelling reasons why this cannot be achieved, or unless the Court is

satisfied that the evidence establishes an exceptional case where the parents have failed

to provide education for the child and to continue to fail to provide education for the

child for moral or physical reasons.”

98. The grounds considered sufficient to rebut the presumption, which were initially

discussed in the context of a failure on the part of parents to provide education for their children,

have since been extended to cases other than those concerned with education. In North Western

Health Board v. H.W. [2001] 3 I.R. 622, the parents of a new-born child objected to a heel pin

prick test being carried out on their child. The test was minimally invasive but could be used

to diagnose an array of diseases which, although rare, if left untreated would have devastating

consequences and could even be fatal. The hospital had invoked the court’s inherent

jurisdiction to obtain permission to carry out the test. By a 4-1 majority, the Supreme Court

36 held that the State could not interfere with the wishes of the parents. Hardiman J. observed the

following at paras. 402-403:-

“This constitutional provision [Article 42.5] was considered in In Re Article 26 of the

Constitution and the Adoption (No.2) Bill 1987. The court held that:-

“Article 42.5 of the Constitution should not, in the view of the Court, be

construed as being confined, in its reference to the duty of parents towards their

children, to the duty of providing education for them. In the exceptional cases

envisaged by that Section where a failure in duty has occurred, the State by

appropriate means shall endeavour to supply the place of the parents. This must

necessarily involve supplying not only the parental duty to educate but also the

parental duty to cater for the other personal rights of the child”.

[…]

It appears, on the basis of the last quotation, that Article 42.5 is broad enough in its

terms to cover the range of parental duties, and not merely those relating to education.

This being so, it appears that the presumption that the welfare of the child is to be found

in the family exercising its authority as such is equally broad in its scope and that any

rebuttal or displacement of it will normally involve invocation of the provisions of

Article 42.5.”

99. However, in that case, the court also made broader observations as to the circumstances

in which the presumption might be rebutted. Denham J. noted at paras. 238-239 of her

judgment:-

“The decision in this case requires the correct constitutional balance between the

responsibility of the parents and the health board and the constitutional rights (family

and personal) of the child. The fundamental principles by which the community wishes

to live are to be found in the Constitution. The Constitution clearly places the family as

37 the fundamental unit of the State. The family is the decision maker for family matters -

both for the unit and for the individuals in the family. Responsibility rests

fundamentally with the family. The people have chosen to live in a society where

parents make decisions concerning the welfare of their children and the State intervenes

only in exceptional circumstances. Responsibility for children rests with their parents

except in exceptional circumstances. In assessing whether State intervention is

necessary the fundamental principle is that the welfare of the child is paramount.

However, part of the analysis of the welfare of the child is the wider picture of the place

of the child in the family; his or her right to be part of that unit. In such a unit the

dynamics of relationships are sensitive and important and should be upheld when

possible as it is usually to a child's benefit to be part of the family unit.

In seeking the balance to be achieved between the child's rights within and to his family,

and the family (as an institution) rights, and the parents” right to exercise their

responsibility for the child, and the child's personal constitutional rights, the threshold

will depend on the circumstances of the case. Thus, if the child's life is in immediate

danger (e.g. needing an operation) then there is a heavy weight to be put on the child's

personal rights superseding family and parental considerations.”

100. At para. 245, Denham J. proceeded to echo what Finlay C.J. said in J.H.:-

“There is a constitutional presumption that the welfare of a child is to be found within

the family unless there are compelling reasons why that cannot be achieved or unless

there are exceptional circumstances where parents have failed to provide education for

the child: In re J.H. (an infant) [1985] I.R. 375. It is not suggested that the child be

removed from the defendants in this case; the child will remain within the family no

matter what the decision. However, any intervention by the courts in the delicate filigree

of relationships within the family has profound effects.”

38 101. In N. v. HSE [2006] IESC 60, Hardiman J. gave a succinct explanation for the

presumption. He noted at para. 148:-

“I do not regard the constitutional provisions summarised above, or the jurisprudence

to which they have given rise, as in any sense constituting an adult centred dispensation

or as preferring the interests of marital parents to those of the child. In the case of a

child of very tender years, as here, the decisions to be taken and the work to be done,

daily and hourly, for the securing of her welfare through nurturing and education, must

of necessity be taken and performed by a person or persons other than the child herself.

Both according to the natural order, and according to the constitutional order, the rights

and duties necessary for those purposes are vested in the child’s parents. Though

selflessness and devotion towards children may easily be found in other persons, it is

the experience of mankind over millennia that they are very generally found in natural

parents, in a form so disinterested that in the event of conflict the interest of the child

will usually be preferred […]

There are certain misapprehensions on which repeated and unchallenged public airings

have conferred undeserved currency. One of these relates to the position of children in

the Constitution. It would be quite untrue to say that the Constitution puts the rights of

parents first and those of children second. It fully acknowledges the “natural and

imprescriptible rights” and the human dignity, of children, but equally recognises the

inescapable fact that a young child cannot exercise his or her own rights. The

Constitution does not prefer parents to children. The preference the Constitution gives

is this: it prefers parents to third parties, official or private, priest or social worker, as

the enablers and guardians of the child’s rights. This preference has its limitations:

parents cannot, for example, ignore the responsibility of educating their child. More

fundamentally, the Constitution provides for the wholly exceptional situation where,

39 for physical or moral reasons, parents fail in their duty towards their child. Then,

indeed, the State must intervene and endeavour to supply the place of the parents,

always with due regard to the rights of the child.”

102. From the aforementioned case law, the general principles in relation to the presumption

that the welfare of the child is to be found within the family and the decisions made by parents

in that context, can be summarised as follows. First, in acknowledgment and in vindication of

the constitutional rights of the parents, the court should presume that the best interests of the

child are best served within the family and for that reason must not unduly interfere with the

affairs of the family. Second, only where there are compelling reasons or where there is a

dereliction of duty on the part of the parents can the courts intervene with family matters. It

should also be noted that, as is apparent from the dictum of Hardiman J. in North Western

Health Board, this principle is based upon the analogous application of the provisions

previously found in Article 42.5 of the Constitution to family rights derived elsewhere under

the Constitution. Finally, in any balancing of the parental rights and the rights of the child, the

best interests of the child are paramount.

103. Before applying the aforementioned principles to the facts of the instant case, I should

briefly mention how the constitutional amendments, i.e. those brought about by the

introduction of Article 42A and the deletion of Article 42.5, may have altered the constitutional

position.

104. In principle, it could be argued that the changes to the Constitution have moved the

point at which the State may seek to interfere with parental rights. Regrettably, none of the four

parties to this application addressed the significance of these developments. Nonetheless, I

think it would be unsatisfactory if I did not make a few observations regarding the changed

landscape.

40 105. First, Article 42A.1 now explicitly makes reference to the rights of the child. On the

one hand, it might be said that the explicit reference to the child should be taken to bolster the

proposition that children are now to receive greater immediate protection from the State. On

the other hand, given that the rights of the child were previously recognised by the court, be

that under Article 41 or Article 40, it might be stated that Article 42A.1 does no more than

merely restate rights already acknowledged to exist.

106. Second, Article 42A.2.1° although formulated in similar terms to that of Article 42.5,

may now have taken on a different colour in light of the structural changes that have occurred.

On a plain reading, it is not unreasonable to assume that the provision was primarily intended

to provide the child with the right to demand that the State would interfere to protect its rights

where their parents had failed in their duty, unlike, Article 42.5, which was interpreted to

provide parents with the right to limit State interference with decisions made concerning their

children. Naturally, the argument can be made that the latter is the natural consequence of the

former, i.e. the right of the child for State interference in certain circumstances necessarily

includes a right of the parents not to be subjected to State interference unless those

circumstances are present, but it is not immediately obvious why this should be so.

107. Furthermore, even prior to the constitutional amendments, the application of Article

42.5 to Article 41 was on a rather narrow footing. The text of the constitution did not indicate

that Article 42.5, which was embedded within Article 42, was to be applied to Article 41. In

North Western Health Board, one justification proffered for this application was that Article

42.5 is “broad enough in its terms” to justify application in the context of Article 41. But, to

what extent the “breadth of the terms”, contrary to the explicit words used, justifies application

of the provision in the context of another right is not immediately evident. Moreover, the

structure and text of the Constitution in Articles 41 and 42 did not indicate that the framers of

the Constitution intended that the provision of one article should be applied to another. Now,

41 with the constitutional changes, the approach of applying the limitations formerly listed in

Article 42.5 in the context of Article 41 may be fatally undermined. Nevertheless, given the

small differences between Article 42.5 and Article 42A.2.1° and the unaltered Article 41, I feel

bound by the decision in North Western Health Board to construe Article 42A.2.1 as limiting

State interference, as proposed by counsel for John’s mother.

Is the Decision in Principle a Family Matter and Is the Presumption Rebutted?

108. In North Western Health Board, the court accepted that a decision by parents about

whether their child should be subjected to a screening test was a family matter. But, that case

was brought under the court’s inherent jurisdiction and, further, it was accepted that the

circumstances would have been different if the court’s wardship jurisdiction could have been

invoked. Murray J. observed at para. 286:-

“If this court was exercising a parens patriae jurisdiction and stood in loco parentis to

the child such as would arise if he was a ward of Court then the Court would be free to

decide whether the child should be subjected to a P.K.U. test on the basis of what a

prudent and responsible parent would do in the interest of the child. Since the Court

does not exercise such a jurisdiction in this case, this approach is not open to it.”

109. Likewise, in In re a Ward of Court (withholding medical treatment) (No. 2) [1996] 2

I.R. 79, Hamilton C.J. made similar comments. In re a Ward of Court the mother of an adult

ward, in her capacity as committee of the ward, sought directions as to the ward’s medical

treatment. At the time the ward had been in a minimally conscious state for over 20 years and

her mother applied to the court to ask for an order that the life-sustaining treatment be

withdrawn. She put forward a similar argument to that of John’s parents in the present case

arguing that her parent wishes were protected under the Constitution and must not be interfered

42 with except in exceptional circumstances. Hamilton C.J. made the following observation at pp.

163-164:-

“The family

The family is the basic unit group of society, its special position in our community is

recognised by the Constitution. Article 41, s. 1 states:

"1 The State recognises the Family as the natural primary and fundamental unit

group of Society, and as a moral institution possessing inalienable and

imprescriptible rights, antecedent and superior to all positive law.

2 The State, therefore, guarantees to protect the Family in its constitution and

authority, as the necessary basis of social order and as indispensable to the

welfare of the Nation and the State".

This case concerns a ward of court and so the jurisdiction to make the decision in this

situation lies with the court and not the family. The mother of the ward is the committee

of the ward and her view is shared by the entire family. The family's view as to the care

and welfare of its members carries a special weight. A court should be slow to disagree

with a family decision as to the care of one of its number if that decision has been

reached bona fides after medical, legal and theological advice and careful

consideration.

In this case, the family is united in its view of what decision should be made. While

that view does not determine the issue before this Court it is a factor to which the Court

should give considerable weight.

The core of this case concerns personal rights. The personal rights of the ward. Article

41, on the other hand, has to do with the institution of the family. As Costello J. said

in Murray v. Ireland [1985] I.R. 532 at p. 537 (having considered the judgment of

Kenny J. in Ryan v. Attorney General [1965] I.R. 294):

43 ". . . the rights, in Article 41, s. 1, sub-s. 1, are those which can properly be said

to belong to the institution itself as distinct from the personal rights, which each

individual member might enjoy by virtue of membership of the family. No

doubt if the rights of the unit group were threatened or infringed, any member

of the family could move the court threat to the rights granted to the unit, and

not to those of its individual members."

At issue in this case are the personal rights of the ward: not the rights of the fundamental

unit group of the State. Thus, it is a matter which falls to be decided as a matter of

personal rights rather than under Article 41.”

110. Thus, the authorities suggest that where the wardship jurisdiction is exercised, the

matter is no longer a family matter and it falls to the court to determine what is in the child’s

best interests. But, in her oral submissions, counsel for John’s mother pointed to a passage in

Kelly: The Irish Constitution (5th ed, 2018) where its authors remark that there is no principled

justification for treating a child brought into wardship and a child where medical treatment is

sought pursuant to the court’s inherent jurisdiction differently. Although this point was not

expanded upon by counsel in argument or by the authors of Kelly what I assume they mean is

that both the inherent jurisdiction and the wardship jurisdiction must be exercised in accordance

with the Constitution and, as a consequence, constitutional rights must be vindicated equally,

regardless of which jurisdiction is invoked. Accordingly, it is argued on behalf of John’s

parents that even where the wardship jurisdiction is invoked, as is in the present case, their

rights must be respected in the same way as if John had not been taken into wardship.

111. I have to say that I have found the differing approaches in the case law, depending upon

whether or not the court’s wardship jurisdiction is invoked, difficult to reconcile. However, on

a close analysis of the relevant authorities, I am satisfied that John’s parents are correct in their

assertion that the State simply cannot have recourse to the wardship jurisdiction to escape the

44 limitations otherwise imposed upon it by the Constitution. As touched upon earlier, the

presumption that the welfare of the child is to be found within the family and the decision made

by their parents in respect of their care, unless that presumption has been rebutted, prevents the

State from unduly interfering with the affairs of the family.

112. In my view, the decision in In re a Ward of Court can be distinguished from the facts

in this case on the basis that the child in that case was already a ward of court with the result

that the court clearly stood in loco parentis vis-à-vis the ward at the time the dispute between

the hospital and the ward’s mother arose. Once the child in question is a ward of court the court

has the jurisdiction to make the decision for the child. However, here the dispute between the

hospital and John’s family occurred before the court’s wardship jurisdiction was engaged.

Furthermore, John’s parents objected to the court taking John into wardship in circumstances

where they were fully meeting their obligations as parents. In these circumstances the court is

in a very different position to that which it would be in if dealing with a child to which it had

been in loco parentis for many years.

113. In my view, on the facts of this case I am satisfied the court cannot really claim to be

in loco parentis to the ward when the fact of the matter is that the principle reason it was asked

to take John into wardship was to find a suitable forum within which the dispute between the

hospital and John’s parents might be resolved with all due expedition. It, therefore, follows that

the reasoning in North Western Health Board applies with equal force in this case as it applied

to the court’s inherent jurisdiction. What this means is that, in principle, it is a matter for John’s

parents to make the decision concerning his medical treatment. The fact that the wardship

jurisdiction has been invoked does not distract from their rights as parents to make such

decisions without undue interference by the State.

114. This is not to say that there may not be circumstances where a decision regarding the

medical treatment of a child are, even without considering the presumption, not a family matter.

45 For example, where the parents of a child disagree about the treatment to be pursued or where

the child, although still a minor, is, in the eyes of the law, capable of consenting to certain

treatment and does so contrary to the wishes of its parents, the decision may presumptively not

be a family matter. However, in John’s case, the right to make the decision regarding his

medical treatment is, in principle, one for his parents to make.

115. I will now consider whether the presumption in favour of protecting the parental rights

enjoyed by John’s parents to make the decision regarding his medical treatment has been

rebutted. As discussed, the Constitution does not offer unlimited protection to those rights and

the State is permitted to interfere where it can no longer be presumed that the interests of the

child are best served within the family.

116. As I have already observed, the State may interfere with family matters where there are

compelling reasons to do so or where it is established that the parents have failed in their duty.

I pause here to observe that counsel for John’s mother contended that the court can only

interfere where the actions or inactions of the parents amount to dereliction of the duties which

they owe to their child. However, the problem with that argument is two-fold. First, it is not

supported by the authorities. In J.H. and in North Western Health Board, the court explicitly

stated that the State can also interfere where there are compelling reasons for doing so, outside

the circumstances of dereliction of duty.

117. Second, the approach proposed by counsel for John’s mother is not borne out by the

Constitution. The Constitution makes clear that the State must be in a position to step in, even

in the absence of any failure on the part of the parents. The constitutional rights of the child,

although presumed to be vindicated by any decision made by their parents concerning their

care, are not held in abeyance. The State cannot put on blinkers and only look at whether there

has been a failure on the part of one person to determine whether the rights of another person

deserve protection. Where it can be shown that the rights of the child are in serious jeopardy,

46 it is no longer safe for the court or the State to rely upon the presumption that the child’s

imprescriptible rights will be vindicated by their parents. Where there are compelling reasons

to believe that the child’s imprescriptible rights will not be protected or vindicated by their

parents, the State must intervene to fulfil its obligations towards the child. Were that not the

case, the rights of the child could be set at nought. Further, it is important to stress that before

a court may intervene to protect and vindicate the rights of the child it is not appropriate for it

to find that the course of action taken by the parents is not in the child’s best interests. What is

required is that it be established that the rights of the child are so clearly and materially in

jeopardy that the court must make sure that, whatever decision is made, it is the one that

vindicates the child’s constitutional rights.

118. Accordingly, what I must now decide is whether it has been established that John’s

rights are so clearly and materially in jeopardy that there are compelling reasons to conclude

that the presumption is rebutted.

119. To answer the first of the aforementioned questions, it is important to state that

“dereliction of duty” within the meaning of Article 42.5 has been interpreted to be an objective

standard. In In re a baby A.B. [2011] IEHC 1 the court was concerned with an emergency

application brought by a hospital to administer a blood transfusion to an infant. The parents

had objected on religious grounds. Hogan J. remarked at para. 37:-

“Of course, in one sense - as Birmingham J. pointed out in a case with very similar

facts, Re Baby B, High Court, 28th December, 2007 - the use of the term "failure" in this

context is perhaps a somewhat unhappy one, since there is no doubt but that CD and

EF, acting by the lights of their own deeply held religious views, behaved in a

conscientious fashion vis-à-vis Baby AB. The test of whether the parents have failed

for the purposes of Article 42.5 is, however, an objective one judged by the secular

47 standards of society in general and of the Constitution in particular, irrespective of their

own subjective religious views.”

120. Consequently, the question that I must ask myself is whether the position John’s parents

have adopted in relation to his medical care can objectively be classified as a failure of their

duty as parents. Although I have not come to this decision lightly, in my opinion, their actions

must be so considered.

121. First of all, it must be stated that the wishes of John’s parents are undoubtedly born out

of the extent and ferocity of their love for John. It is wholly understandable for any parent who

loves their child as much as they do to be instinctively drawn to making decisions which will

prolong their child’s life. However, in this case, their love of John, has, in my view, rendered

them incapable of acknowledging the fundamental truth as to his condition and handicapped

them in their capacity to vindicate his rights.

122. The court has heard detailed and uncontradicted evidence that the invasive measures

sought to be withheld would have a devastating effect not only on John’s condition but on what

he will endure in his life thereafter. He would be subjected to significant physical trauma in the

course of such treatment and his dystonia would likely become deregulated leading him into a

period or periods of very significant pain. And, John’s parents simply refuse to accept that the

invasive measures his clinicians want to withhold will not bridge John to a life with a better

outlook but will only expose him to a life of further suffering and place him on a poorer health

trajectory than that which he was on before those measures were deployed.

123. Second, the only reasonable explanation for John’s parents refusing to permit his

clinicians give him the subcutaneous medication he might need to bring his pain under control

should he develop a dystonic crisis, must be that their desire to extend his life has blinded them

to the enormity of the pain that he has thus far suffered from his dystonia and will have to

endure in the future in the event of a dystonic crisis. The uncontradicted evidence was that a

48 dystonic crisis would produce pain of the type and duration that John had only once ever

previously experienced. To put that type of pain in context, it is worthwhile noting that John’s

clinicians referred to what I will call his routine dystonic pain in the months preceding this

application as cruel, with Dr W. referring to it as the second most severe she had seen in over

9 years working in Great Ormond Street Hospital where she treated large numbers of patients

with this condition. And the uncontradicted evidence was that pain from dystonia leads

inexorably to an increase in the frequency and severity of dystonic episodes. Yet John’s parents

refuse to let the clinicians intervene to medicate him if there is any risk he might as a result

develop respiratory distress and might as a result possibly die. They have decided he must

remain in pain should he meet a dystonic crisis. No reasonable parent understanding the

consequences of their child experiencing a dystonic crisis of the type anticipated in this case

could reasonably make such a decision.

124. Perhaps, another reason why John’s parents refuse to give consent to John’s clinicians

to treat him with a subcutaneous infusion should he develop a dystonic crisis is because John

himself, because of his disabilities, is simply unable to cry out and implore them to ask the

doctors to alleviate his pain.

125. Regrettably, I have formed the view that the decisions that John’s parents are making,

objectively assessed, are based upon an entirely false premise as to what John has endured to

date and what his prognosis in the future will be following either a dystonic crisis, which might

require a subcutaneous infusion to alleviate his pain, or a crisis that would take him to the doors

of the ICU where he would need invasive measures to survive. In their failure to acknowledge

John’s condition and likely prognosis in either situation, they are failing in their duty as parents

to vindicate the rights which he, because of his age and injuries, cannot himself protect. John

has a right, and his parents, the duty, to make a fully informed assessment of his circumstances,

49 in particular where the effects of any decision that they make regarding either situation will be

so grave and pressing for John.

126. Furthermore, the consequences for John of the wholly unreasonable and

unsubstantiated view that his parents take of what will happen to him as a result of the

implementation of their decisions in the two alternative scenarios discussed above provides

compelling reasons as to why the court must now step in to vindicate his rights.

127. Relevant in this regard is the fact that this case is readily distinguishable from North

Western Health Board in that the threat to John’s rights is much more concrete and real than it

was to the child in that case. Here, there is considerably more certainty that the decision of the

parents will have an adverse and significant effect upon John. Any decision made will

materially affect the life John will live, the pain he will endure and the sacrifices he will be

expected to make. In North Western Health Board, there was only the remotest chance that the

infant concerned would have any of the diseases that the screening sought to diagnose.

128. In addition, I am convinced that there are compelling reasons beyond those already

discussed that demonstrate that John’s best interests cannot be achieved within the family. As

detailed above, the court has heard from an array of expert paediatricians and paediatric

intensivists that the decision taken by the parents will have seriously adverse effects upon

John’s life. I reject the argument that John’s prognosis is in any material respect unclear or

uncertain. There is as much certainty as there can be with any medical diagnosis that John will

not recover in any significant way from his injuries. The brain scans show severe diffuse brain

damage which will never heal. Both paediatric neurologists were very explicit about that. And,

John will have all of the limitations, physical and intellectual, discussed in the course of this

judgment. Furthermore, Dr G. also said that ICU invasive measures will deregulate John’s

dystonia treatment and will, in all likelihood, lead to a resurgence of his dystonia and the pain

that comes with it. And, if for some reason John was to develop a dystonic crisis, the evidence

50 as to the pain he would endure, absent subcutaneous infusion, is simply unimaginable and

would never be accepted by any reasonable person capable of making decisions in respect of

their own welfare.

129. In circumstances where John’s rights are under such strain, the State cannot stand idly

by. No constitutional right can be used to inflict such grievous suffering upon one person. This

is not to say that John’s parents do not deeply care for John. It could not be further from the

truth to say so. Regrettably, I am satisfied that it is the extent of their devotion and love for

John that has left them incapable of stepping in to vindicate his rights.

130. Before concluding my thoughts on this issue, a number of final observations should be

made. First and foremost, nothing I have said in relation to the constitutional rights of John and

his parents mean that the views of John’s parents will not be at the forefront of my mind when

determining where John’s best interests lie. As will be explained later, their evidence as to what

John would choose were he in a position to make a choice has materially influenced the view

I have taken of this case. However, John’s rights are the more pressing concern here.

131. Second, in the case law the concern is repeatedly expressed that State intervention in

family affairs risks the creation of an overbearing State which might meddle with family affairs

which the Constitution has sought to protect. Whilst, in principle, this is a legitimate concern,

in my view, the safeguards the constitution provides are sufficient to guard against any State

overreach in such matters. Furthermore, an argument of this kind is, in a case such as that under

consideration here, something of a red herring. State intervention in this case needs to be seen

in its proper context. Cases like this are extremely rare. In almost all instances, the hospital is

able to come to an agreement with the child’s parents as to how their future care or treatment

should be managed. Multiple witnesses testified that this is the first time they had been involved

in litigation of this kind in Ireland. What this means is that the State intervention is also very

51 rare. The overwhelming majority of decisions regarding the medical treatment of children are

resolved without recourse to State intervention.

132. Lastly, I would like to add that any application such as the one brought in these

proceedings by the hospital should only be entertained where there is no doubt that the hospital

has done everything reasonably possible to convince the child’s parents of their point of view.

To respect the rights of the parents, a hospital needs to demonstrate that it has taken every

reasonable step and availed of every opportunity to reach agreement with the parents. In this

case, the court had a wealth of evidence concerning the efforts made by the hospital to reach

an agreement regarding John’s future care with his parents. Indeed, one witness stated that a

point had been reached where it was unfair of the clinicians to consistently and repeatedly ask

parents to change decisions that they had made concerning their child.

133. For these reasons, I am satisfied that the parental rights derived from article 41.1 of the

Constitution do not preclude State intervention in this case. However, the question remains as

to whether the wardship jurisdiction and the best interest test provide a suitable means by which

this is done. Because there is a risk of repeating myself, I will address this issue in the section

of this judgment where I discuss whether the case law that gave rise to the best interest test

should be applied. However, a point that can be addressed at this stage is that which was

contended for by counsel for John’s mother. She maintained that if State intervention is

constitutionally permitted, it must be by way of statute and in support of her submission she

relied upon several passages from the decision in North Western Health Board, where the court

intimated that this must be so.

134. Hardiman J. had perhaps the most detailed engagement with this issue. At pp. 761-762

he remarked:-

“I would however, observe that in a case such as the present it is particularly desirable

from every point of view that any initiative to compel parents to subject their children

52 to a test such as P.K.U. be based on statute law and not on an application such as the

present. I am expressing no view whatever as to whether such legislation would be

desirable or otherwise. But if it were thought that a parent should be deprived of a right

to refuse to consent to the P.K.U. test, or any test, inoculation, examination, or

procedure, that would be a major departure in public policy. The legislature, and not

the courts, are in the best position to judge whether such an innovation is necessary,

proportionate or desirable, whether there are countervailing considerations of a social

or medical nature or otherwise; whether there exists sufficient consensus in the

community to make legislation feasible or desirable and many other relevant

considerations. Compulsory medical diagnosis or treatment in any form is, for the

reasons identified in the judgment of the learned Chief Justice, a topic regarded with

some unease throughout the civilised world. The degree to which this unease should be

recognised, whether precautions can be taken to allay legitimate fears, and the

fundamental question of whether the imperative behind the P.K.U. test or any other test

is sufficient to justify coercion, are all matters best addressed legislatively.”

135. What becomes obvious from this passage is that the reason for imposing this restriction

is something not found in the present case. In North Western Health Board, granting the relief

sought by the hospital, to carry out the heel pin prick test, would have meant that the test would

become effectively compulsory for every child. This type of decision is best reserved for the

Oireachtas and therefore, the court observed that a decision of this kind cannot be made without

statute. Here, this complication does not arise. The relief sought by the hospital will not

transcend the boundaries of this case. It is solely aimed at John’s peculiar circumstances and

will not have any effect upon policy or similar cases.

53 Accelerating Death

136. Before I engage with the wardship jurisdiction in detail, I have to address the point

raised by Senior Counsel for John’s mother, Ms. Siobhan Phelan S.C., that the relief sought in

para. 4 of the Notice of Motion in effect amounts to a permission in favour of the hospital to

accelerate John’s death. She refers in particular to the subcutaneous infusion of dystonia

medication which may have as its side-effect to suppress respiratory function. This, as a matter

of constitutional law, she contends, is impermissible. In support of her argument Ms. Phelan

principally relies upon a passage from In re a Ward of Court in which Hamilton C.J. said as

follows at p. 124:-

“As the process of dying is part, and an ultimate, inevitable consequence, of life, the

right to life necessarily implies the right to have nature take its course and to die a

natural death and, unless the individual concerned so wishes, not to have life artificially

maintained by the provision of nourishment by abnormal artificial means, which have

no curative effect and which is intended merely to prolong life.

This right, as so defined, does not include the right to have life terminated or death

accelerated and is confined to the natural process of dying. No person has the right to

terminate or to have terminated his or her life, or to accelerate or have accelerated his

or her death.”

137. At this point, I feel that it is important to say a few words about paediatric palliative

care which may assist in characterising the relief sought by the hospital.

138. In the course of this case I had extremely helpful and thought-provoking evidence from

Dr M., who, as already stated, is a specialist in paediatric palliative medicine. Dr M. explained

that children’s palliative care is designed to embrace the physical, emotional, social and

spiritual care of the child whilst also providing support to their family. It can last for days,

weeks, months and sometimes years. And, I have to say I was somewhat surprised to hear from

54 Dr M., that the statistics suggest that if a patient has palliative care at the end of their life they

are likely to live longer than they might otherwise have lived but for the introduction of that

care.

139. To qualify for palliative care a child must have a life-limiting condition or it must be

shown that the child would benefit from a holistic and total active approach to their care. The

primary focus of a palliative care specialist is on the child’s symptoms. The intent of palliative

care is never to shorten life, its goal is to relieve suffering and keep the child living well for as

long as possible whilst providing care that will give them the potential to die well, given that

death is a normal part of life. Children receiving palliative care are continually reassessed and

re-evaluated and are given the medication they need to keep them comfortable. This is why I

am told it is so important that a programme of palliative care be put in place to run parallel with

John’s other clinical care. The clinicians wish to enhance John’s quality-of-life without

compromising on quality for the sole purpose of sustaining life.

140. In John’s case, the hospital is seeking permission to administer strong pain-killing

medication via subcutaneous infusion in the event that a dystonic crisis cannot be brought under

control with less drastic measures.

141. Two observations may be made in relation to this issue. First, it must be acknowledged

that decisions regarding the administration of intense pain-relieving medication which has as

its side-effect that breathing or another vital function is suppressed are made every day in

hospitals around the country. And, as was made clear in this case, all of John’s medications,

not only that which might be delivered by subcutaneous infusion, have the potential to depress

his respiratory reserves because sedation has the effect of relaxing his body and reducing his

ability to cough and clear his secretions.

142. Second, it is important to properly characterise the relief sought. It is not what in

common parlance is often referred to as “euthanasia” if one understands euthanasia to mean

55 the preventative killing of a person who is terminally ill so that he or she will not suffer a

painful death. The subcutaneous infusion under discussion in this case would only ever be

given as a response to pain of the enormity earlier discussed in an effort to reduce that pain and

not given to terminate life so that that pain never manifests itself. Another way of putting this

would be to say that the relief the hospital is seeking is not to cut short John’s life in anticipation

of his eventual demise, but, in circumstances where John has a dystonic crisis, the medication

then administered in response to that specific crisis may have the effect of terminating his life.

No one is suggesting that the hospital be given liberty to terminate John’s life because he may

experience pain in the future.

143. As was made clear by Dr M.’s evidence, the aim of palliative care is never to shorten

life and the subcutaneous infusion of strong painkilling medication is not to be used to cut short

John’s life at the discretion of the hospital. But, in an effort to control any acute pain John may

suffer, the medication administered may, as a secondary effect suppress his breathing. This

approach chimes with the comments made by Hamilton C.J. in In re a Ward of Court. John’s

right to life is vindicated where, in an effort to provide him with a pain-free life, he is given a

dignified death.

Applicability of Previous Case Law and the Wardship Jurisdiction

144. Next, counsel for John’s mother argued in the alternative that the case law previously

applied to cases of this kind does not operate in John’s case. She contends that because the

application has been brought so soon after the accident and there is no settled diagnosis, this

court cannot apply the test it normally applies. To do so, counsel argues, would amount to an

inordinate extension of the court’s wardship jurisdiction as well as a failure to adequately

protect and vindicate John’s right to life or the parents’ constitutional rights. She argues that

56 the facts of this case are “unprecedented” and that the safeguards offered by the existing case

law are insufficient to protect John’s rights in the circumstances.

145. To understand why John’s mother’s contention regarding the existing case law must

fail and to understand why the wardship jurisdiction is applicable in the instant case, it is

important to acknowledge the objective of the wardship jurisdiction and to understand, in light

of that objective, how and why the courts have applied the best interest test in the past in cases

of this kind.

146. As is echoed throughout the case law, the wardship jurisdiction exists to vindicate and

protect the rights, constitutional or otherwise, of the ward. In a passage often cited in wardship

cases in In re a Ward of Court Hamilton C.J. observed at p. 126:-

“The loss by an individual of his or her mental capacity does not result in any

diminution of his or her personal rights recognised by the Constitution, including the

right to life, the right to bodily integrity, the right to privacy, including self-

determination, and the right to refuse medical care or treatment [...] The ward is entitled

to have all these rights respected, defended, vindicated and protected from unjust attack

and they are in no way lessened or diminished by reason of her incapacity.”

147. Therefore, a declaration of wardship never has the effect of depriving the ward of their

rights. Such a declaration is made only in recognition of the fact that the ward can no longer

exercise these rights due to their mental incapacity. In the hands of the ward the right would be

inexercisable and therefore lost. With the State being under an obligation to vindicate and

protect those rights, it falls to its organs to do so. By virtue of s. 9 of the Courts (Supplemental

Provisions) Act 1961, that duty has been vested in the President of the High Court or any other

High Court judge as the President may from time to time determine. It follows that the wardship

jurisdiction exercised by the courts exists, not to take rights away, but to vindicate those rights

where the ward cannot do so themselves. All rights continue to be vested in the ward, it is only

57 that another has to look after those rights as the ward, in his or her present condition, is unable

to do so.

148. This objective, to vindicate rights, is preserved in the test that is applied in an

application to determine what medical treatment a ward of court should receive. In cases where

the ward has a life-threatening condition or where medical treatment is likely to have an adverse

impact upon the ward’s life, it is his or her constitutional right to life that takes centre stage in

such deliberations. In essence, the court must ask itself how best to vindicate and protect the

ward’s right to life, in circumstances where the court cannot ask the ward what his or her wishes

would be and where he or she has given no explicit instructions.

149. First, in light of the constitutional protections of the right to life and in

acknowledgement of the sanctity of life, there is a strong presumption in favour of life-

sustaining or life-saving treatment. For example, in In Re S.R. (a Ward of Court) [2012] 1 I.R.

305 at 323 Kearns P. held: “[i]t is accepted that, given the importance of the sanctity of human

life, there exists in circumstances such as in the present case a strong presumption in favour

of authorising life-saving treatment”. Similarly, in H.S.E. v. J.M. (a Ward of Court) [2017] 1

I.R. 688 at 713 Kelly P. observed the following:-

“‘The nature of the right to life and its importance imposes a strong presumption in

favour of taking all steps capable of preserving it, save in exceptional circumstances’

(per Hamilton C.J. in In re a Ward of Court (withholding medical treatment) (No. 2)

[1996] 2 I.R. 79 at p. 123).

There exists a ‘constitutional presumption that the ward’s life be protected’ (per

Denham J. in In re a Ward of Court (withholding medical treatment) (No. 2) [1996] 2

I.R. 79 at p. 167). These observations are made in the context of rights derived from the

Constitution. But the position is no different at common law as is clear from the views

58 expressed by Baker J. in In re M. (Adult Patient) [2011] EWHC 2443 (Fam.), [2012] 1

W.L.R. 1653 at p. 1687 where he said:-

‘The first principle is the right to life. As Lord Goff observed nearly 20 years

ago in [Airedale N.H.S. Trust v. Bland 714 H.C. [1993] A.C. 789 at p. 863], ‘the

fundamental principle is the principle of the sanctity of human life’. Munby J.

in [R. (Burke) v. General Medical Council [2004] EWHC 1879, [2005] Q.B.

424, at para. 213(o), p. 495] spoke of the ‘very strong presumption in favour of

taking all steps which will prolong life’ ... ‘The principle of the right to life is

simply stated but of the most profound importance. It needs no further

elucidation. It carries very great weight in any balancing exercise.’”

150. However, to vindicate the right to life does not equate to doing everything medically

possible to sustain life or to ensure survival at all costs. In In re a Ward of Court it was

recognised that to vindicate the right to life may mean to choose dignity in life and dignity in

death over survival. At p. 124 Hamilton C.J. said:-

“As the process of dying is part, and an ultimate, inevitable consequence, of life, the

right to life necessarily implies the right to have nature take its course and die a natural

death and, unless the individual concerned so wishes, not to have life artificially

maintained by the provision of nourishment by abnormal artificial means, which have

no curative effect and which is intended merely to prolong life.”

151. This concept was perhaps more succinctly put by the trial judge (Lynch J.) in the same

case, in words which were endorsed by O’Flaherty J. on appeal at p. 134 of his judgment:-

“Death is a natural part of life. All humanity is mortal and death comes in the ordinary

course of nature and this aspect of nature must be respected as well as its life-giving

aspect. Not infrequently, death is welcomed and desired by the patient and there is

nothing legally or morally wrong in such an attitude. A person has a right to be allowed

59 to die in accordance with nature and with all such palliative care as is necessary to

ensure a peaceful and dignified death.”

152. These observations demonstrate why the presumption in favour of life-sustaining

treatment is a presumption and not a hard and fast rule, albeit a strong presumption. It may be

rebutted. Departure from it is justified where the court is satisfied that granting the relief sought

is in the best interests of the ward. More specifically, the court must be convinced that the

treatment proposed by the hospital is in the best interests of the ward, as subjectively assessed.

I will pause here to say that I hope that John’s mother and father understand what I mean when

I say that John’s best interests must be subjectively assessed. By that I mean that I must ask

myself what John would decide was in his best interests if he was able to view himself in the

circumstances he is presently in and was able to make a reasoned and informed decision as to

how he would like his condition to be managed. In Re S.R. (a Ward of Court) another case

concerned with a minor, Kearns P. expressed it as follows in a passage cited and applied by

Kelly P. in J.M., at para. 55 (p. 323 of the report):-

“[...] I agree with the views expressed by Lord Donaldson M.R. in In re J. (Wardship:

Medical Treatment) [1991] Fam. 33 that the proper test in such a case is to ask what the

ward would choose if he were in a position to make a sound judgment. It follows that

the decision maker should not impose his own views on whether the quality of life

which the child would enjoy would be intolerable, but should determine the best

interests of the child subjectively.”

153. To appreciate why the test is subjective is important in understanding why the courts

have applied the best interest test to cases of this kind. The reasons behind this were perhaps

best encapsulated by McKenzie J. in a decision of the Supreme Court of British Columbia in

In re Superintendent of Family & Child Service and Dawson (1983) 145 D.L.R. (3d) 610

quoted by Lord Donaldson M.R. in In re J. (A Minor) (Wardship: Medical Treatment) [1991]

60 Fam. 33 which, although not made under the confines of the Constitution, apply equally in

Ireland. At pp. 620-621 he observed:-

“I do not think that it lies within the prerogative of any parent or of this court to look

down upon a disadvantaged person and judge the quality of that person's life to be so

low as not to be deserving of continuance. The matter was well put in an American

decision - Re Weberlist (1974), 360 N.Y.S. 2d 783, at p. 787, where Justice Asch said:

'There is a strident cry in America to terminate the lives of other people - deemed

physically or mentally defective ... Assuredly, one test of a civilisation is its concern

with the survival of the "unfittest," a reversal of Darwin's formulation. . . . In this case,

the court must decide what its ward would choose, if he were in a position to make a

sound judgment.'

This last sentence puts it right. It is not appropriate for an external decision maker to apply his

standards of what constitutes a liveable life and exercise the right to impose death if that

standard is not met in his estimation […]"”

154. The best interest test is to vindicate the ward’s right to life as he would exercise it, not

as the court would view it. The subjective character of the test is in acknowledgement of the

fact that said right is the ward’s right, which they may exercise in whatever way they deem fit.

Abstaining from life-saving or life-sustaining treatment is only viewed as lawful vindication

of a ward’s right to life where the court is satisfied that the ward would choose such a course

of action to be in his or her best interest.

155. In practical terms, this has the following effects. First, to establish what the ward would

do, the court consults with those closest to the ward, family and treating doctors as well as any

additional witnesses that the parties may wish to call. Having heard their evidence, it is then

for this court to determine what the ward would view as being in their best interests in light of

it. It is important to emphasise, however, that the subjective character of the test does not mean

61 that the court cannot assess, for example, the medical evidence soberly and realistically. The

court, in the same way the ward would, must squarely face the facts, however unpleasant that

may be. But, in carrying out its assessment of what is in the ward’s best interests the court must

have regard to the peculiarities and characteristics of the ward and how they would view it

were they in a position to carry out such an assessment.

156. However, any such assessment must not be carried out lightly. As was set out by Lynch

J. in In re a Ward of Court at 98:-

“[...] I am well aware of the difficulties involved in applying this test. As was pointed

out in argument and also in many of the cases cited to me, a patient in the whole of his

health and in the full flush of youth, may have expressed robust views about not being

maintained in an incapacitated condition but when actually in such a condition, might

be very anxious to cling onto such life with such limited pleasures that still might

remain to him [...]”

157. Furthermore, in establishing a ward’s wishes, his or her parents are likely to give

evidence as to what they believe to be in the best interests of the ward and what they believe

the ward would choose. Although any such evidence is no doubt material to any application,

the court must be weary that this evidence may be coloured by emotion as well as their own

desire to keep their child in their lives. They may also be blinded by their love for them to

recognise the full extent of the situation their child finds themselves in.

158. Lastly, as the precise considerations which fall to be considered and the weight attached

to them are determined by reference to how the ward, in this case John, would make the

decision, it is difficult to look at past cases and give a set list of factors which the court must

take into account when deciding what would be in his best interests. Nevertheless, because

there is a degree of similarity between cases and because there is always some difficulty in

ascertaining the ward’s wishes, it may be useful to mention what kind of factors have been

62 taken into account by the courts in the past when deciding upon applications of this kind. In In

re a Ward of Court Denham J. gave perhaps the most extensive and detailed non-exhaustive

list. She listed the following factors as relevant, while also stating that the totality of the ward’s

position must be taken into account:-

“(1) The ward’s current condition.

(2) The current medical treatment and care of the ward.

(3) The degree of bodily invasion of the ward the medical treatment requires.

(4) The legal and constitutional process to be carried through in order that medical

treatment be given and received.

(5) The ward’s life history, including whether there has been adequate time to

achieve an accurate diagnosis.

(6) The prognosis on medical treatment.

(7) Any previous views that were expressed by the ward that are relevant, and

proved as a matter of fact on the balance of probabilities.

(8) The family’s view.

(9) The medical opinions.

(10) The view of any relevant carer.

(11) The ward’s constitutional right to:-

(a) Life.

(b) Privacy.

(c) Bodily integrity.

(d) Autonomy.

(e) Dignity in life.

(f) Dignity in death.

63 (12) The constitutional requirement that the ward’s life be (a) respected, (b)

vindicated, and (c) protected.

(13) The constitutional requirement that life be protected for the common good. The

case commences with a constitutional presumption that the ward’s life be

protected.

(14) The burden of proof is on the applicants to establish their application on the

balance of probabilities, taking into consideration that this Court will not draw

its conclusions lightly or without due regard to all the relevant circumstances.”

159. Having assessed in some detail the objective behind the wardship jurisdiction as well

as the nature and purpose of the best interest test, it should be clear why the wardship

jurisdiction is the appropriate forum for this dispute and that, contrary to the submissions made

on John’s mother’s behalf, the existing case law must apply to the present proceedings. First,

regarding the best interest test itself, it is evident from what I have already stated that there are

strong safeguards implicit in its formulation, the effectiveness of which are not diminished by

the fact that the application is brought very early in John’s post-accident life. The strong

presumption in favour of life, the subjective nature of the test, the care taken when determining

John’s wishes and the checks and balances of the consultative wardship procedure apply with

equal force to John’s application as they do to any other application. None of these protective

measures become less effective in the circumstances of this case. Therefore, John’s right to life

is adequately vindicated by the application of the best interest test.

160. As for the contention that the test inadequately protects the parents’ constitutional

rights, it is important to note that, once the hurdles of Articles 41 and 42A have been overcome,

the parents’ rights take a backseat. This application is determined by reference to how John

would make the decision. The court applies the subjective best interests test and not, as is

common in wardship matters, the prudent and loving parent test for a reason. Here, the court

64 is, above all, concerned with how John’s right to life is best vindicated. This does not mean

that the views of the parents are not material in determining what John would choose, but their

rights as parents are secondary to John’s interests.

Clear and Convincing Evidence

161. When applying the best interests test, the court must be convinced that there is clear

and convincing evidence regarding the best interests of the ward to enable it to make a decision

in the case. The standard of proof was set out quite clearly by Kelly P. in J.M. at paras. 94-96:-

“There was a divergence of opinion amongst judges on this topic [the standard of proof]

in the In Re a Ward of Court case. In the High Court, Lynch J. held at p.92 that:-

‘The proper standard of proof … is evidence which should be clear and

convincing having regard to the gravity of the matter for decision.’

Hamilton C.J. found no fault with that approach but Denham J. in her judgment said

that the onus was on the applicants seeking to end the treatment ‘to prove their case on

the balance of probabilities’. She did, however, note that ‘the court should not draw its

conclusions lightly or without due regard to all the relevant circumstances, including

the consequences for the ward, the family and the carers involved’.

Blayney J. took a different view. He said:-

‘The learned trial judge clearly treated the case as being a lis inter partes. He

referred to the onus of proof being on the committee and he held that the

standard of proof was that the evidence should be clear and convincing. It seems

to me to be doubtful, however, if this approach was correct. In a lis inter partes,

the proceedings are adversarial and one consequence of this is that the court is

confined to deciding the case on the material placed before it by the parties. It

cannot of its own motion seek additional information or require any particular

65 witnesses to be called. But such is not the position of the High Court when

exercising the former jurisdiction of the Lord Chancellor …

If in the present case the learned trial judge had wanted to have a further

examination made of the ward, he would have been entitled to direct one. He

could not have done so in a lis inter partes. In the circumstances it seems to me

that there was no need for the learned trial judge to deal with the onus of proof

or the standard of proof but it must be added that the fact that he did so does not

in any way affect the decision at which he arrived.’

I believe the views of Blayney J. to be correct. This is not a lis inter partes. The parents

were joined as notice parties. They indicated a desire to obtain independent evidence

from their own nominated experts and that desire was given effect to by order of the

court. Whilst, therefore, I believe Blayney J. to be correct in his analysis of the

jurisdiction being exercised, nonetheless the decision will fall to be made only upon

evidence which is clear and convincing.”

162. Ms. Phelan submitted that, in light of the new evidence, there is now greater uncertainty

as to John’s condition and prognosis and that, consequently, it cannot be said that there is clear

and convincing evidence as to what would be in John’s best interests. Besides the updated

medical reports, she points towards statements made by Dr W. that John is “comfortable” that

there is “no active suffering” and no “moral distress”. She also refers to the supplemental

testimony given by Prof. D. that John is a different patient. Ms. Phelan also argued that the new

evidence suggests that, following a first stint in ICU, John may have extended periods of

dystonia-free living in circumstances where his dystonia has been brought under control before.

In light of that eventuality, it cannot be said that there is clear and cogent evidence as to John’s

prognosis and what is or is not in his best interests.

66 163. The new evidence shows that the symptoms of John’s dystonia have ceased. It also

shows that the objective markers for pain, i.e. an elevated heart rate and sweating, have

subsided. Therefore, I accept that John does not currently suffer from dystonic episodes which

means that he is, in all likelihood, pain free at this time. Although this evidence undoubtedly

establishes that John’s present condition has changed, it has not altered his long-term outlook

or the effect ICU treatment will have upon him. His body will decondition, his health trajectory

will diminish with admission to ICU and with each subsequent admission. His dystonia is very

likely to become de-regulated when admitted to ICU and it is just as uncertain as it has been

prior to the new evidence being adduced that his doctors will be in a position to re-establish

the equilibrium of medication that gives John the window of peace he currently enjoys.

164. Furthermore, the new evidence does not alter the fact that John will not recover

significantly from his injuries. His neurological condition remains unchanged and his outlook

is as bleak as it was when the court first heard evidence on the present application. ICU will

not provide John with a bridge to recovery, which is what invasive measures are designed to

achieve. Nothing in the new evidence changes that. ICU will however be a source of great

distress to John and will catapult him into the cycle of pain, loss of dystonic control followed

by a recovery to a lesser health trajectory than he enjoyed before the crisis, only so that the

whole process can repeat until he finally succumbs.

165. In addition, the need for the subcutaneous infusion has not been changed by the

supplemental evidence. Although it seems that the new evidence indicates that a dystonic crisis

is, for the time being, a more remote possibility and that, as a result, the need for a subcutaneous

infusion has become less likely, should a dystonic crisis present itself, the evidence remains

that John will need it just the same to bring his pain under control. Dr G. was explicit about

this.

67 166. Thus, it cannot be said that the evidence is not clear and convincing. A change in the

evidence regarding John’s present-day condition casts no material doubt upon whether or not,

from a medical point of view, the withholding of ICU treatment or the administration of pain

medication is in his best interests.

Clinical Judgment

167. This brings me to mention briefly a point canvassed on behalf of John’s father by Mr.

Colin Smith, B.L., who suggested to several of John’s treating clinicians that if they considered

the invasive measures would not be in his best interests that they did not require any court order

to withhold them. I inferred from this line of questioning that I was being asked to consider the

possibility that because the clinicians said they would instigate invasive measures if a crisis

was to occur in the near future, that they were somehow unsure that such an approach was not

in John’s best interests.

168. It seems to me however that this does not indicate anything of that kind. The doctors

are unanimous and consistent in what they believe to be in John’s best interests. However, the

problem for them is that their patient has not specifically authorised any particular approach to

his treatment. As a result, the clinicians cannot be sure what treatment they should administer

if John’s condition deteriorates. The uncertainty exists because John cannot say in which

direction his care should now go, not because the clinicians are unsure as to the benefit of the

approach they propose.

169. Furthermore, John’s parents remain staunchly opposed to any course of action which

could shorten John’s life if it can be prolonged by intervention. And, in light of those objections

the clinicians do not believe they can simply follow their own clinical judgment and withhold

treatment unless it is clear beyond doubt that the invasive measures would be futile. By futile

I mean that the invasive measures would stand no chance of success. Given that the clinicians

68 believe that John would probably survive a crisis if it was to happen in the near future and

knowing of the wishes of John’s parents and of the fact that his life might be saved, they could

not fail to intervene.

170. Moreover, John’s treating clinicians entered into an agreement with his parents that

until such time as they could bring an application such as this to the court, that they would take

all steps to prolong John’s life even if it meant intervening with invasive measures which they

did not consider to be in his best interests. Whilst perhaps of lesser importance the court also

heard how John’s doctors feared that if they followed their own clinical judgment and failed to

intervene to save John’s life, they might be exposing the hospital to future litigation. In these

circumstances I am satisfied that without a court order John’s clinician will not be in a position

to act in his best interests.

What Would John Want?

171. The fact that the patient under consideration is of tender years might in another case

be a reason for not attaching substantial weight to what the court considers that child might

consider to be in his or her best interests. However, I do not believe that to be so in the present

case for a number of reasons.

172. First, there is nothing to suggest that John’s experience of pain and his ability to tolerate

pain should be much different to that of an adult faced with similar pain. So, once the type and

extent of the pain to which John will be subjected, depending upon the approach taken to his

future care, is relatively clear it should not be too difficult to assess what John would want if

faced with either the prospect of invasive measures in ICU or dystonia which can only be

relieved satisfactorily by the use of subcutaneous infusion.

173. Second, insofar as the court might attach weight to the view it considers John would

have concerning the life ahead of him in the event of invasive measures being instigated, he

69 has lived enough of life to know the difference between the life he would have had if this

terrible accident had not happened and the life that he will face if he is to receive invasive

measures in the event of a crisis. His position is not akin to that of an eleven-year-old child

brain-damaged and quadriplegic from birth who could have no expectation of enjoying a life

such as that which John, because of his lived experience would expect to enjoy.

174. Accordingly, bearing in mind the presumption in favour of delivering life-sustaining

treatment and the factors and evidence earlier referred to, I will now consider what I believe

John would want if he could voice his opinion on the following two questions. First, if his

health was to decline to the point that his life could only be saved by being taken to the ICU

where invasive measures would be instigated, would he want his clinicians to intervene

knowing the damage they would cause and the increase in pain they would probably cause?

Or, would he more likely elect to reject those interventions in favour of treatment that would

keep him comfortable and pain-free for as long as possible? Second, in the event of his dystonia

becoming symptomatic to the point that it could only be controlled by subcutaneous infusion,

would he ask to be given that treatment knowing that it might lead to respiratory compromise

and the foreshortening of his life or would he decline that treatment in favour of less effective

pain control?

175. For the purpose of answering these questions, I must have regard to all of what I have

been told about John in terms of his character, his interests and his life. I must approach my

decision remembering that, although his parents are separated, John comes from a tightknit

family and that he is particularly close to his mother and his second eldest brother. I must focus

upon how he loved school and has good friends. And, I must think about John as a relatively

carefree young man who is an ardent Liverpool supporter, a keen follower of American

wrestling and who loves music, in particular that of Nathan Carter.

70 176. I must also have regard to what I have been told by his parents as to what they believe

John would want, both in terms of his present care and his care in the event of a crisis. They

believe he would want to fight on regardless of the difficulties facing him because, according

to his mother, he has the “heart of a lion”.

177. In deciding what John would want I have tried to put myself into his young head and

heart. I have reflected on all of his interests and what I know of his experience of life to date,

both within and beyond his family. Although still relatively young, I have thought about what

John might consider to be a worthwhile and meaningful life. And, from observing the lives of

his parents, and those of his older sister and brothers I must assume that he expected that he

would enjoy a life full of opportunity, subject of course to life’s occasional disappointments

and upsets. I’m sure John expected he would get a good education and later employment that

would give him the chance to pursue his many interests and that he would derive great

enjoyment from the comfort of family and friends. In the course of the evidence I heard that

John has expressed an interest in becoming a vet. And, having regard to what young people

such as John are currently exposed to on television and social media, I would be highly

surprised if, before his accident, John was not already thinking that at some stage in his life he

would fall in love and find a partner with whom he would share his life and perhaps have his

own family.

178. In making my decision I have also proceeded on the basis that John’s love for his

family, and in particular his love for his mother, is as strong as any relationship can be between

a mother and son. I have taken this approach not only because of what I have heard in evidence

in recent weeks but also because I have had the benefit of seeing the really close bond that

exists between John’s mother and his eldest brother who has been by her side to support and

comfort her throughout this case. Anyone observing that relationship would recognise the depth

of feeling and love they share. This, combined with what has been described as John’s mother’s

71 immaculate care of him throughout his hospitalisation satisfies me that this is the correct

approach. Accordingly, I have assumed that John would probably accept more pain than almost

any other child if by doing so he could prolong his relationship with his parents and siblings.

179. Having said all of that, I must ground my decision in the real world and what I have

heard of John’s condition and his pain. And, I must give John the voice that he presently does

not have to make known what he would want to happen in terms of management of the types

of crises discussed in evidence. I regret that in giving my reasons I must speak using very direct

and plain language because this judgment has monumental consequences for John’s parents.

180. It is all too easy for someone like me who is not in pain to intellectualise pain. All I can

say is that I truly believe that most of us have very little capacity to tolerate pain, particularly

if it is pain which, when it occurs, would be described by clinicians who see a lot of pain, as

“cruel”. And, being human, if our pain is in someone else’s control we invariably expect that

those in charge of our medical care will to do everything possible to subdue it.

181. I also recognise that there are many people who are strong enough to willingly put

themselves through painful medical treatment or intervention. However, in my experience that

usually only happens where the treatment or intervention offers the patient the possibility of a

cure or an improvement in their condition and where they believe that the treatment will restore

their health to a position where they can at least look forward to some enjoyment of life. The

patient will likely weigh up the level and duration of the pain to be endured and balance that

against the benefit that accepting that pain will probably bring.

182. But what is proposed here is treatment which is not to be undertaken with a view to

improving John’s condition or affording him even the remotest possibility of any enjoyment of

life. The objective of instigating invasive measures would solely be to artificially extend John’s

life, regardless of the consequences of those measures. Assuming John survives such

aggressive intervention, the evidence is clear that he will be left in a physically worse state of

72 health than he was in before his crisis, allied to which he will suffer a significant if presently

unquantifiable amount of additional uncontrolled pain and all so that he can remain in a semi-

vegetative or minimally conscious state until that cycle of crisis followed by intervention

followed by more pain, repeats itself at increasingly shorter intervals until such time as his frail

body can take it no longer. And it is this knowledge that I must impute to John when I come to

consider how he would answer the questions earlier mentioned.

183. In the course of my own relatively long life, I have met many people who have shown

great strength and resilience in the face of adversity but I know none that if in John’s shoes

would choose treatment designed to prolong their life and escalate their pain rather than

treatment that would make them comfortable for the rest of their life particularly in

circumstances where the pain to be endured would reap nothing in terms of future happiness

or joy.

184. I do not believe it credible or even remotely possible that John, knowing that he will

spend most of the rest of his life in a hospital bed and will never walk, never talk, never see,

never go to school, never have new friends, never communicate, never feel love, happiness or

pleasure, will be doubly incontinent and will if he survives invasive measures, endure

significant periods of pain, would, if faced with a crisis of the type anticipated, instead of saying

“do everything you can to make sure I suffer as little pain as possible” say “I would prefer you

to take me to the ICU and do whatever is necessary to keep me alive” knowing that if he needed

CPR, the measures taken would likely involve breaking his ribs and inflicting other damage

only to return him to a health trajectory worse than that which he faced before his crisis. I am

equally certain that, faced with a level of pain that could not be controlled other than by use of

a subcutaneous infusion, John would want to receive that treatment even if it might lead to

respiratory compromise.

73 185. I say all this because I have no reason to believe that John, if he had a voice, would not

respond in the same way as the children and adults suffering from dystonia who have been

spoken about by the clinicians in the course of their evidence. And, as we know, John’s case is

very different from almost all others insofar as his dystonia for many weeks was at the severest

end of the spectrum and it is likely that following invasive measures he will experience

significant periods of very severe pain at a minimum for several weeks, if not longer.

186. All I can say to John’s parents is that I truly believe that if John could speak knowing

what was facing him in ICU and in terms of his life thereafter he would plead with them to

save him from the trauma and pain ahead when this present window of calm ends, as is an

absolute certainty. I know John would not willingly consent to that treatment. He would want

the alternative approach to be taken, namely that he would be kept as comfortable and safe as

possible for as long as possible in the arms and care of those best equipped to mind him. And

I believe that when faced with dystonic pain that was out of control he would want his parents

and doctors to give him the most effective treatment available to treat that pain even if it might

shorten his life.

187. For these reasons I have no doubt that it is in John’s best interests and in accordance

with what he would wish that he should not be subjected to invasive measures of the type set

out at para. 4 (ix) of the Notice of Motion unless his clinicians consider that any one or more

of them are in John’s best interests and that his clinicians should be entitled to manage his care

in accordance with the terms of the permissive orders sought at para. 4 (i)-(xiii) of the Notice

of Motion.

188. It would be grossly remiss of me to end this judgment without stating that I am full of

admiration for John’s parents. They have been a constant presence at his bedside since his

accident, and the clinicians in charge of his care have roundly praised the support and love they

have shown for John throughout the harrowing period. It may be that the depth of their love

74 for John and the chasm that his premature death will bring to their lives, combined with the

fact that John cannot tell them of the enormity of his pain, that they hold fast to the idea that

his pain is somehow tolerable in the face of a tsunami of evidence to the contrary given by

clinicians who between them have decades of experience of dystonia.

189. In making my orders today, I truly believe that not only will John be the beneficiary of

the plan now proposed by the hospital, but that his parents will, within a relatively short period

of time, come to see the benefit of that plan for the whole family. I say this because for the first

time there is at least a prospect that John may be able to be discharged to a regional hospital

closer to his home or to a unit where his comfort and the support of his family will be the goal

of his carers, whereas, in the absence of such orders John would appear destined to spend the

rest of his life enduring great pain in a specialist hospital only so that his life could be extended

by invasive measures in the event of a crisis. I hope John’s parents will, in time, come to accept

that this is what John would choose.

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