Re L (Medical Treatment: Benefit)
| Jurisdiction | England & Wales |
| Judge | THE PRESIDENT |
| Judgment Date | 22 October 2004 |
| Neutral Citation | [2004] EWHC 2713 (Fam) |
| Date | 22 October 2004 |
| Court | Family Division |
| Docket Number | CASE NO: FD 4 P 02120 |
[2004] EWHC 2713 (Fam)
IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Royal Courts of Justice
Strand
London WC2
The President of the Family Division
CASE NO: FD 4 P 02120
MR LISSACK QC appeared on behalf of the mother
MR FRANCIS QC appeared on behalf of the guardian
I have decided to give an extempore judgment because I do not think it is fair, in the circumstances of this case, when there is only one remaining issue to hold everybody—and particularly the mother—waiting until some time next week. I would like to express my very real gratitude to all the counsel and solicitors in this very difficult and worrying case for the care and sensitivity as well as their obvious efficiency in presenting this case to me.
This an application by two National Health Service Trusts for a declaration about the future care of a baby, L. born on 30 January 2004 and now nearly 9 months old. Proceedings were brought as a result of disagreements between the two hospital Trusts and the mother over the future care of L. Many of the facts are now in the public domain, and it has been agreed that the proceedings would be open to the public, but I would like to remind everyone in this judgment—as I have during the hearing of this case—that the identities of the doctors, nurses and other staff of both hospitals, together with the experts who have written reports, are not to be disclosed in the press and in the media generally. This is mainly in order to allow the health professionals to get on with the care of L. in the future.
L. has had the enormous misfortune to be born with a genetic disorder, trisomy 18, which is known as "Edward's Syndrome". I have been provided with a number of reports both from the treating specialists from the two hospitals and also from a number of medial experts including a consultant general paediatrician instructed jointly by the Trusts and the mother, a consultant paediatric geneticist instructed by the mother, and a consultant paediatric intensivist instructed by CAFCASS on behalf of L.'s guardian.
The doctors are, on almost all issues, in agreement and the mother through Mr Lissack QC who is acting for her, has not asked for any of them to give evidence. I did however have the interesting experience of counsel giving me medical evidence by way of submissions. It has been agreed by all the legal teams that the case should proceed by way of submissions on the two issues that remained in dispute at the beginning of this case.
L.'s medical condition
As part of his condition, L. suffers from multiple heart defects, chronic respiratory failure, gastroesophageal reflux, severe developmental delay, epilepsy and hypertonia. Shortly after his birth, cardiac surgery was considered, but after wide discussion and consultation, was not performed. He has remained for most of his life in the hospital in Bangor. He has never yet been discharged from hospital, although it is the aim of the mother to be able to take him home to her other two children. He has suffered cardiac and respiratory arrests—the respiratory arrests on many occasions—and lesser episodes of desaturation on a normal, almost daily basis. The evidence of the hospital at Bangor is that his clinical condition has gradually deteriorated, and he has required increasing amounts of oxygen. He has been unable to swallow and has become increasingly intolerant to nasogastric tube feeding.
This condition existed before he went to Alder Hey Hospital. The concerns about the management of his nutrition and feeding led to the transfer on 4 October to Alder Hay Children's Hospital, where he remains. It is the intention to send him back, I understand, to the hospital at Bangor as soon as possible after these proceedings. There were unsuccessful attempts to place a nasogastric tube, and on 8 October, he suffered a cardio-respiratory arrest. Fortunately, a tube was successfully inserted last week, and another tube this week. The possibility of gastrostomy was considered, but initial investigations led to the view that it would not be successful. He continues to receive a number of treatments including oxygen by continuous positive airways pressure (CPAP) and intermittently by mask and bag.
The agreed medical position is that the condition is incurable, and most children die within a few weeks or months. Girls appear to survive slightly longer than boys, and boys seldom live beyond one year old. Any treatment for L., invasive or non-invasive, would be palliative. It is impossible for it to be curative. The view of the treating doctors is that L.'s condition has continued to deteriorate since his referral to Alder Hey. He has been receiving over the last fortnight in particular, substantially higher and increasing doses of oxygen.
The strongly-held view of the mother is that L. has not deteriorated to the extent that is set out in the medical reports. She points to peaks and troughs. L. has clung on to life and is a fighter, and has already defied the odds by staying alive. She feels that he has the best of his life ahead of him. She points out that he has recovered from two cardiac arrests, and several respiratory arrests requiring resuscitation. She naturally wants to give him every opportunity to be as fulfilled as is possible in his life. She accepts the medical reality and that his life expectancy is very limited. She recognises realistically that this is a question of management of his shortened life and the most appropriate palliative arrangements for his needs. She would want him to be dignified and comfortable, to end his life with dignity and peacefully, but in his time. She sees herself as his advocate and as his voice. I have no doubt that she is as much focussed on his best interests and his welfare as are the medical teams in both hospitals.
Naturally she does not wish or intend to cause him discomfort, pain or distress. She feels strongly that she and L. have a close bond and a relationship which has been consistently underestimated by the doctors. The relationship between her and L., she says, is one of profound significance. It is certainly clear to me from the nursing evidence, the reports of two of the medical experts, and of the guardian, that the relationship is close and that L. with all his medical problems responds to his mother, lies happily in her arms while she cuddles him, and then in her arms he goes peacefully to sleep. She believes that the medical profession may be giving up on L. too soon.
The guardian in her excellent report, prepared at extremely short notice, saw the good relationship between L. and his mother. She saw L. as a real personality and she reminds me through Mr Francis QC for the guardian, that as a real personality and a person he can also suffer pain and distress, and that L. is gravely ill.
L. has been extremely well cared for in both hospitals by the nursing and medical teams and by his mother who has devoted herself to him over all these months. The hospital teams obviously care very much about L.'s welfare and have been anxiously considering his best interests. The difficulty in this case is that the hospitals and the mother have not been able to agree the best way to go forward to manage the palliative care, which is the only form of care available in this truly sad case. This has created considerable tensions between the mother and the professionals. It is, however, a tribute to the mother—and equally, if I may so, to her legal team—that the issues I am asked to decide on are now within such a narrow compass. Many of the other issues have been agreed, and I have an agreed order in front of me. The basis upon which the High Court is asked to exercise the inherent jurisdiction has been set out in numerous decisions in the appellate courts and by High Court judges.
The NHS Trusts ask the court to decide in a situation where the parent and the Trusts cannot agree on a crucial issue affecting his life. In my approach to this problem I should respectfully...
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