Re K (A Child) (Withdrawal of Treatment)
| Jurisdiction | England & Wales |
| Judge | THE PRESIDENT |
| Judgment Date | 09 May 2006 |
| Neutral Citation | [2006] EWHC 1007 (Fam) |
| Court | Family Division |
| Docket Number | Case No: LS05C06013 |
| Date | 09 May 2006 |
[2006] EWHC 1007 (Fam)
IN THE HIGH COURT OF JUSTICE FAMILY DIVISION
Royal Courts of Justice
Strand, London, WC2A 2LL
The President
Case No: LS05C06013
Laura Davidson (instructed by Eversheds) for the Applicant
Roger Bickerdike (instructed by CAFCASS) for the 1st Defendant
Mrs Rosemary Exall (instructed by Bowmans Family Law Solicitors) for the 2nd Defendant
Miss Elizabeth Rylands (instructed by John Delany & Co) for the 3rd Defendant
Roger Bickerdike (instructed by Leeds City Council) for the 4th Defendant
Hearing date: 6 April 2006
Approved Judgment
I direct that pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken of this Judgment and that copies of this version as handed down may be treated as authentic.
This judgment is being handed down in public on Tuesday 9 February 2006. It consists of 17 pages and has been signed and dated by the judge. The judge hereby gives leave for it to be reported.
The judgment is being distributed on the strict understanding that in any report no person other than the advocates or the solicitors instructing them (and other persons identified by name in the judgment itself) may be identified by name or location and that in particular the anonymity of the children and the adult members of their family must be strictly preserved.
Sir Mark Potter, P:
On 6 April 2006, on the application of a Teaching Hospital NHS Trust (The Trust), I made a declaration to enable the medical staff of the Trust to remove from the abdomen of a baby in their care a tube necessary to maintain her nutrition, and to move to a regime of palliative care in order to allow her to die peacefully over a short period of time. I indicated that I would give my reasons later. They are now set out below. Since making my declaration K has in fact died. However, I state my reasons as at the time of the application.
K was born on 23 September 2005 and is now some five and a half months old. She has remained in hospital and subject to treatment by the Trust since her birth.
K was born prematurely with an inherited condition called congenital myotonica dystrophy (CMD), a neuromuscular disorder causing chronic muscle weakness and associated with learning difficulties. The condition varies greatly in severity. The muscle cells of the person affected have difficulty in relaxing. This leads to progressive muscle wasting and weakness particularly in the lower legs, hands, neck, and face. Upon gripping, the muscle contractions take longer than normal to relax. K is a severe case.
At the time of her birth, K's parents were not in a position to look after her and she was immediately made the subject of an interim care order, since when the local authority has had parental responsibility for her which they have exercised in close consultation with her parents.
There is a long-standing problem of CMD in K's family. Her mother has CMD of moderate severity. However, in the early weeks and months of her life K has experienced major difficulties in swallowing nutrition and breathing. She had very poor breathing effort from birth and had immediately to be put on to a mechanical ventilator. She was transferred from the hospital where she was born to the Trust's Neo-natal Intensive Care Unit for further management. After one week she was able to breathe for herself in air, but on day nineteen of her life, she had an apnoea (a hiatus in her breathing) which required her to go back on to mechanical ventilation for four days and then to be extubated onto CPAP (oxygen delivered under pressure through small tubes into the nostrils). At one month of age she had a central line inserted in order to continue artificial intravenous feeding. This is known as total parenteral nutrition (TPN). Unfortunately, K developed a serious Staphylococcus Aureus infection soon after insertion of the line, which led to septicaemia and required her to go back on to mechanical ventilation for a further forty-eight hours. [This is not indicative of improper care. It is a risk inherent in long term insertion of such a line]. She then had almost a month occasionally breathing for herself but mainly on CPAP. However, on day sixty, she collapsed with septicaemia and had to return to mechanical ventilation. It was her fourth episode of such ventilation in the eleven weeks since her birth.
By this time K's care was presenting very substantial problems. In particular, she had severe feeding difficulties. She has a very severe problem with gut motility, leaving her unable to tolerate milk feeds. A variety of methods of feeding her artificially were tried, including naso-gastric feeding (tube passed into the stomach) naso-jejunal feeding (a tube passed into the small bowel just beyond the stomach.) but she was unable to tolerate these and they led to recurrent vomiting. She therefore became dependent on artificial nutrition, given intravenously via the central venous line previously referred to (a catheter passed into a large vein near the heart). It was the complication and risks of blockage inherent in prolonged use of such a line which led to the bouts of infection and episodes of septicaemia to which I have already referred. Her septicaemia has been kept at bay to date by antibiotics.
K suffered, and has continued to suffer, from progressive weakening of her muscles. She developed a characteristic facial appearance with a drooping mouth and falsity of muscle movement and her muscular movements have reduced. Following her second episode of septicaemia she was afflicted by a left-sided focal seizure involving rhythmical twitching of her left arm and left leg. Her septicaemia caused thrombocytopenia (low platelets) which in turn led to a large right-sided intra-ventricular haemorrhage (bleeding into the fluid cavity on the right side of her brain). Despite two platelet transfusions, her platelets remained critically low so that she was at imminent risk of further life-threatening haemorrhage.
By mid-December 2005, almost 3 months after her birth, K was markedly developmentally delayed with little interaction with her surroundings. She had no social smile and remained in a floppy and worsening state. She continued dependent on artificial nutrition and became jaundiced due to lack of milk feeding and long-term artificial intravenous nutrition. She was critically ill on a mechanical ventilator and on a broad spectrum of antibiotics to treat her septicaemia, infection. There appeared to be little prospect of her recovering from her medical problems and, assuming she survived the episode of septicaemia she would require a prolonged period of ventilation before being able to breathe for herself again.
The medical staff became of the opinion that she had very small prospect of recovering from her medical problems. She had a very adverse long-term neuro-developmental prognosis with complete lack of ability to tolerate milk feeds. They concluded that it would not be in K's interests to continue with further artificial life support should she suffer a further episode of severe infection or cardio-respiratory collapse in the near future. To further resuscitate her, if such event occurred, would only expose her to further cycles of potentially distressing intensive care treatment of the kind already undergone without altering the underlying prognosis of her developing muscle weakness. Her parents expressed the view to the medical staff that they felt that K was suffering and should be allowed to die peacefully. They did not wish the hospital to continue with further intensive care treatment which they felt would be pointless and would not change the long-term outcome. However, in view of the interim care order in place, whereby parental responsibility resided in the local authority, and the fact that the parents could thus not themselves act alone in consenting to withdrawal of treatment, the Trust considered it necessary and proper to seek the court's determination as the appropriateness of the withdrawal and withholding life sustaining treatment in the event of further crisis.
In those circumstances the hospital trust sought the permission of the court to allow them not to provide artificial mechanical ventilation or cardio-pulmonary resuscitation in the event of K having a further episode of collapse due to her underlying CMD. The view was taken that, if she survived her current episode of septicaemia, the Trust would undertake to continue normal care including providing intravenous nutrition while attempting to re-establish milk feeds. However, in the event of further deterioration from her septicaemia, or subsequent deterioration following recovery from septicaemia if she were to suffer a cardiac or respiratory arrest, the Trust would not instigate active resuscitation but allow her to die peacefully.
On 20 December 2005, having heard counsel for the Trust and for K (represented by CAFCASS as her Guardian ad Litem), upon being satisfied as to the views of the parents and having studied the relevant medical reports from the Consultant Neo-natologist and Consultant Neuro-developmental paediatrician responsible for K's care, as well as the Guardian's report dated 18 December 2005, an order was made by Mr Justice Wood, sitting at Newcastle which made declarations in the following terms.
"(i) K, as a child, lacks capacity to make decisions about medical treatment to be delivered to herself for her physical healthcare.
(ii) Having regard to K's best interests, and in the event that the Consultants in Neonatal and Medicine are the Consultants responsible for K's care at the Applicant Trust treating K:
(a) In the event that K recovers from the current episode of septicaemia, but remains dependent on mechanical ventilation long-term (which for the avoidance of doubt constitutes several weeks)...
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