K (a minor), Re

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) due to a further deterioration in her neuro-muscular condition, the Trust be at liberty to withdraw the mechanical ventilation and allow her to die.

(b)

If during K’s current illness, or a future inter-current illness, in the opinion of the Consultant, medical staff death is inevitable and imminent (within a few hours) the Trust be at liberty to remove K from the ventilator prior to actual cardiac arrest, so to allow her to be held by her parents as she dies, rather than by dying on the ventilator.

(c)

In the event that K survives the septicaemia illness and is weaned from mechanical ventilation, the Trust be at liberty to withhold assisted ventilation or other extraordinary means of life support if she suffers a further significant deterioration due to either (i) progression of her underlying neuro-muscular condition or (ii) a severe inter-current illness such as septicaemia. If at any time during K’s current hospital admission she were to collapse leading to cardio-pulmonary arrest the Trust be at liberty to withhold advanced means of life support, including cardio-pulmonary resuscitation.

(d)

In the event K recovers from her current septicaemia illness and is weaned from assisted ventilation, but remains on total parenteral nutrition which would not be sustainable in the long-term due to the current septicaemia or thrombosis of central venous lines, the Trust be at liberty to seek Directions and guidance from the court as to the appropriate action at that time.”

It is apparent that at paragraph 2 (ii) (d), a position was envisaged whereby K would recover from her septicaemic illness and would be weaned from assisted ventilation but would remain on TPN. It was also identified that this would not be sustainable in the long-term if there were recurrent septicaemia or thrombosis of the central venous lines and that, should this situation arise, the Trust should be at liberty to return to the court to seek directions and guidance as appropriate.

That position has now been reached and the application before me seeks a declaration in the following terms; which for convenience I have slightly rephrased:

“1.

K, as a child, lacks capacity to make decisions about medical treatment to be delivered to herself for her physical healthcare.

2.

Having regard to K’s best interests, and in the opinion of the Consultant and Health Care Team treating K at the Applicant Trust:

(i)

It should lawful for the Applicant Trust, having regard to the fact that the responsible Paediatric Medical Consultants have reached a decision that K’s medical condition and prognosis are such that it should lawful, to discontinue parenteral nutrition;

(ii)

it is lawful that the infusion of fluids should cease;

(iii)

K should continue to receive full non-life prolonging palliative care, offering relief of any distress with analgesic and anxiolytic medication and should be allowed to die in comfort and dignity.”

The multi-disciplinary report referred to in the application is one prepared by Dr N the Consultant in Neo-natal medicine caring for K, in consultation and with the approval of the senior neo-natal sister caring for her; the social worker from the local authority concerned with her welfare; K’s court-appointed Guardian; the solicitor to K’s mother, a Consultant Neuro-developmental Paediatrician instructed by solicitors for K to provide an expert view on her condition and progress, the Consultant in Paediatric-gastroenterology advising on K’s clinical care and providing expert advice on her long-term parenteral nutrition and general nutrition care; and the Consultant in Paediatric Palliative Care involved in K’s current clinical care.

That report summarises K’s position as follows.

At five and a half months K has shown little developmental progress. She has floppiness of her trunk and no head control. She is able to move her arms and legs but it is not clear that there is any purposeful movement. She has visual inattention and does not fix and follow. She appears to respond to sound.

As to her nutritional care it has been impossible to achieve feeding by milk into her stomach or intestines. She is not able to suck or swallow and has shown no sign of improvement in this respect. Milk simply pools in her mouth and there is no active swallowing, yet no coughing. It is not safe for her to be given oral milk feeds as she does not have the strength or co-ordination to deal with milk and swallowing. Oral feeding would be likely to lead to aspiration of milk into the lungs which would be lethal. She cannot receive milk or medication into the stomach which does not absorb them. She will vomit if milk is introduced into her stomach through a tube and frequently vomits in any event from her gastric secretions.

K’s nutrition formerly involved milk feeding through a transpyloric tube which passes through the stomach and is advanced into the jejunum (small intestine). K needs milk at 46 mls/hr. Before her infection in December it was possible to achieve 17 mls/hr but since that time a maximum rate of 7 mls/hr has been achieved. However, given in this way, the milk comes back into the stomach and is vomited, often with bile. In recent weeks the tube tended to become dislodged by K in her movements and had to be replaced, which was distressing for her and in early February, a decision was taken to cease such transpyloric feeding.

So far as her condition and prognosis are concerned, the Consultant Neuro-developmental Paediatrician instructed by the solicitors for K makes clear that he has never seen a child with CMD of K’s severity who has survived. She is progressively falling below the expected development of a child of her chronological age and her lack of progress indicated a very poor outlook. He anticipates that if (as is highly unlikely) K survives, she will continue to show very poor developmental progress and will in future remain totally dependent for all her needs. She has a visual problem which is likely to be cortical visual inattention, meaning that her eyes work but her brain has difficulty in interpreting the message from her eyes. The Consultant’s opinion is that she is in the worst category of CMD, the question being not whether she will survive but how soon it is likely she will die. This is in turn likely to depend on the development of illness such as chest infection or further infection in the central venous line, or the cardiac complications of CMD

So far as K’s future nutritional care is concerned, the problems with her intestinal function mean that her bowel is not moving fluid in the correct direction with the result that she suffers frequent vomiting. While it remains possible that this intestinal failure is due to a second unrelated condition, it is likely that it is simply the result, and a reflection of the severity, of her CMD. If anything there has been a gradual deterioration of milk tolerance and it is now almost inconceivable that K’s gut function will improve. This will leave her dependent on TPN, receiving all her energy protein and other nutritional needs as a sterile solution through an intravenous catheter flowing into one of the large veins in the chest. This means she will continue to require high dependency care, her life support being the central line, prone to infection, blockage, or fracture. The treatment in any event causes the liver to become adversely affected and K’s laboratory results are showing persistently abnormal liver function tests and recent deterioration. This is likely to become worse, causing liver failure at around one year of age. The only solution in principle for their eventuality is a liver and small bowel transplantation. That would be a major operation which no transplant team would consider in K’s case, given all her other problems and the fact that complications of transplantation are more common in children with multi-system disorders. The alternative of a surgical jejunostomy, an operation in which a hole is made directly from the skin of the abdomen into the intestine so that feeds can be put through a tube straight into the small intestine would be most unlikely to benefit K, given the difficulties already experienced with her transpyloric feeding; there is no reason to think such surgical intervention would assist her. If she remains on TPN she will not be able to go home, as her care would represent too great a challenge to her parents or any foster carers.

The report discusses the position, if at this stage, TPN is terminated and mere palliative non-life prolonging care were given. Palliative care is essentially the treatment of distress where there is a low possibility of cure and the provision of comfort and improved quality of life so far as possible. The aim is not to prolong life but to provide the child and their family with support and care anticipating the child’s death.

In K’s case, if non-life prolonging care were instituted, TPN would be stopped. It would not be reasonable to give other intravenous fluid as this would not provide for her nutritional requirements, and it would artificially prolong life without any benefit to her. Analgesic sedation could be provided intravenously through a butterfly needle placed under the skin. In these circumstances K would die peacefully and slowly. It is probable that she would die after a small number of days although, given that she is currently well nourished, she might survive for a few weeks. A bedroom could and would be provided for her at a local Hospice for Children where the parents could also stay, being provided with full care and hotel services. They would be supported by a programme of support for K’s admission which would continue with bereavement care after K had died.

The care planning conference considered the two options. First the continued use of TPN and high dependency, life-prolonging care and the second that of non-life prolonging care without TPN. So far as the first is concerned the conference noted the bleak prognosis and that continuing to maintain K’s high dependency care was causing her inevitable stress and discomfort. Continuing use of TPN will not improve her quality of life; rather the reverse. If the treatment is continued, there is no reasonable chance of recovery and complications are almost inevitable. It cannot be said precisely when such complications will occur, but it is likely that, without intensive care, they will lead to K’s early death and add to her burden of discomfort. All those present at the conference were of the view that continued use of TPN and high dependency life-prolonging care is not justified or in K’s best interests and that the alternative option should be adopted, namely that the infusion of fluids should cease and K should receive full non-life prolonging palliative care, relief of any distress from absence of nutrition being achieved by analgesic and anxiolytic medication.

I have before me an up to date report from Dr N giving details of K’s current condition and I have heard from Dr N at length in oral evidence by way of further examination. K’s care continues under the same team.

Since the first multi-disciplinary report, K has shown some very slow developmental progress, but her development continues to fall further and further behind the normal range of development for a child of her age. She can on occasion respond to the staff and her parents when caring for her. At times she appears comforted when being bathed or cared for by them. She shows pleasure when her father is bathing her. The medical staff do not think that she can smile, but the father believes she can. She may be able to fix for a short period on a bright object held in front of her face and, fleetingly, on someone’s face. Sadly however and in parallel, she is regularly distressed with frequent discomfort, painful procedures and vomiting. She cries and wails and often cannot be comforted when she is unhappy or uncomfortable. After vomiting her wailing can last up to 40 minutes and she appears very distressed. She cannot sit up and has no head control. She does not reach out and take objects and shows no purposeful movements.

As to her nutritional care, her intestinal failure shows no sign of change. She is no longer being given milk as this causes distress and immediate vomiting. As already indicated, each time she has a spell of vomiting, she cries and cannot be comforted for a substantial period afterwards.

K’s liver is showing significant deterioration in her liver function tests. She is now visibly jaundiced and has enlargement of her liver and spleen. The deterioration is continuing. She requires routine blood tests twice a week and more frequently when she is unwell.

K’s survival continues to depend upon TPN with its potential for infection. On the weekend of 13 March 2006 she became acutely unwell, though not to the extent requiring mechanical ventilation. This was caused by a further episode of line infection and septicaemia. She is no longer clinically ill but the episode of infection is likely to lead to one of the following problems. An infected line is liable to fall out or to be pulled out. The stitch which holds it in place has become displaced and there is infection in the skin around the entry wound for the line. If the infection ceases to be controlled by the antibiotics and she becomes clinically unwell again, the line will have to be removed. The antibiotics, although effective in controlling the infection are unlikely to eradicate the bacteria from the line so that, if and when antibiotics stop after the current planned period of five to six weeks, it is likely that infection will return. Again the only solution will be the removal of the line. Finally, the presence of grumbling infection on the line is likely itself to cause further deterioration of the liver function. If this leads to liver failure, again the line will require to be removed. If that has to be done, K would need a further operation to replace a new line. That operation would be technically difficult as K has had Broviac lines in both of the veins in her chest which are usually used for this purpose. Such further operation would involve discomfort, pain and distress through which the medical staff are reluctant to put K.

K’s parents are finding it increasingly difficult to watch her when she is suffering and distressed. Although they gain comfort from seeing her when she is comfortable and shows some positive response, they are in great difficulty continuing to see her suffer. The immediate recourse to the court is necessary because of the current infection in the TPN line and the likely need for its replacement by a new Broviac line into veins in the chest, causing continued discomfort and distress to K and heightening the wishes of her parents that she should not continue to suffer.

I have before me position statements filed on behalf of K’s mother and father, the local authority who share parental responsibility for K, and K’s Guardian who visited K in hospital on 4 April 2006 and saw her, speaking also to members of the nursing staff and the mother and father who were there.

The mother makes clear that she has continued to be regularly informed and consulted by medical staff about K’s medical condition and plans for her treatment, as well as having seen the report of Dr N following the multi-disciplinary planning conference together with a more recent report. She understands the severity of K’s medical treatment and the dilemma faced by the doctors in relation to her continued treatment. She well understands the alternative questions posed at this stage as to whether K should continue with TPN or whether it should be withdrawn and K be allowed to die. She has found it very difficult to make a final decision about K’s future treatment. However she has been increasingly upset when seeing K in pain and discomfort and above all else wishes to avoid her undergoing any unnecessary distress and suffering. On the basis that future treatment is deemed futile to improve K’s position, she accepts that palliative care is the appropriate course to take. She would prefer K to be transferred to the hospice previously mentioned so that she can die peacefully with herself and others closest to her present.

The father states that he visits K daily. He states that he understands that inevitably she will eventually die as a result of her condition. He says that he understands that the hospital wish to discontinue TPN and cease infusion of fluids in K and that he understands the consequences of withdrawing such treatment. He says that he wishes what is best for K and does not wish her to suffer or be in any discomfort. He therefore does not oppose the Trust’s application.

The position statement of K’s Guardian is that she has considered all the reports and documents and opinions to which I have already referred. On her visit to the hospital on 4 April she states that K was awake when she visited and lying in her cot. Her nurse was attending to her needs and attempting to gain her attention by rattling a toy for her. K did not respond to this in anyway. The Guardian also tried to engage K with another toy and gained a similar lack of response. K was not in any pain at that time, the nurses informing the Guardian that for the time being her condition appears stable, although it involves vomiting on a daily basis. The Guardian was present when the father, his parents and a family friend arrived to see K. However, there did not appear to be any real response. K’s father told the Guardian that he was finding it easier to talk about his feelings and discussed the question of moving K to the hospice if and when TPN was withdrawn. The father said he would prefer it if K stayed on the ward as he knew all the staff and was comfortable with this. However, I have been told by his counsel that he is now content for K’s final days under care to be spent in the hospice as proposed.

The Guardian states that she is satisfied, and remains of the view, that at all times the doctors have had in mind K’s best interests and have consulted properly with the parents who are in agreement with the Trust’s proposals to cease to provide K with TPN but simply to provide for non-life prolonging care offering relief of any distress with analgesic and anxiolytic medication. She also notes the agreement of the local authority to the recommendations of the medical experts. In the light of the clear advice of the medical professionals, the position of the local authority and the views of K’s parents, as well as on her own assessment of the position, the Guardian’s view is that it is in K’s best interests for the course proposed to be pursued.

Those positions have been confirmed to me by the parties’ representatives and I have heard oral evidence at length from Dr N. He has confirmed the position as set out in the reports to which I have above referred. He has made clear and I accept that, even with the most assiduous care and the successful adoption of every prophylactic technique in the face of infection, K’s expectation of life is to be numbered in months rather than years. Even on the most optimistic assessment, liver failure is likely to occur at around the age of one year (i.e. within about 6 months), without prospect or benefit of a transplant operation to save K’s life. At around the same time, cardiac compromise, which is already occurring due to her primary muscular disease, is likely to become critical in any event. Since there is no realistic chance or prospect of medical intervention to make K’s intestines function properly, she will remain entirely dependent on TPN with all its discomfort and risks of infection to the end, whenever that end comes. K’s distress and discomfort will continue and will be likely to increase rather than improve.

As to K’s immediate prospects, she is at this moment clinically stable. However, she faces a likelihood of deterioration within a few weeks either by reason of continuing infection resulting from the presence of the line (which infection antibiotics appear to be keeping at bay but are unable to overcome), or the dislodging of the line. As to the first, tests in the last few days have shown that infection is still present. It is likely to continue and, if so, to require removal of the line in the near future. As to the second, because of the displacement of the stitch and the skin infection surrounding the line entry hole, dislodgment is a real likelihood. If and when either occurs, none of those concerned think it would be proper or desirable to seek by operation to introduce a replacement line as a means of prolonging K’s unhappy life. At that point, some fluid and antibiotics could in principle be administered through peripheral drip, but venous access has become so difficult as a result of earlier treatment that it would last for a few days only at best. All are concerned that K’s inevitable end should be as painless and dignified as possible. All are now also agreed that the position has been reached whereby there are effectively two realistic alternatives so far as K’s treatment is concerned. Either the line is removed in the next few days and TPN ceases, followed by a period of organised palliative care to ensure that K suffers no further discomfort or distress by administration of suitable analgesic and anxiolytic drugs, enabling peaceful transfer of K to a hospice where her parents can be with her to the end. Alternatively, the line is left in place and K’s regime of discomfort continues until the occurrence of an inevitable crisis over the next few weeks, which crisis would precipitate rapid deterioration and discomfort with little chance to plan for a dignified and peaceful end.

In the course of Dr N’s evidence, he referred to the publication by the Royal College of Paediatrics and Child Health: “Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice” (2^nd Edition) May 2004. This publication is a guide to treating Consultants on the ethics of withholding or withdrawing life support in cases of this kind. It is not authoritative as to the law. However its purpose is to provide a framework on which to construct a reasoned and compassionate approach to withholding or withdrawing treatment from patients and it is stated in the foreword to the 1^st edition to be “framed within the existing law and upholding the rights of the child.” The Summary at the outset sets out five situations in which the authors consider it may be ethical and legal to consider withholding or withdrawal of life sustaining medical treatment, which is plainly applicable to the TPN treatment in this case. The first two categories (i.e. the “Brain Dead” Child and the “Permanent Vegetative” State) are not in point in this case. However, Dr N made clear that he considered category three (the “No Chance” Situation) and category four (the “No purpose” Situation) both apply in this case.

Category three is stated to be that where:

Treatment delays death but neither improves life’s quality nor potential. Needlessly prolonging treatment in these circumstances is futile and burdensome and not in the best interests of the patient; hence there is no legal obligation for a doctor to provide it…

Category four is that where:

… the child may be able to survive with treatment, but there are reasons to believe that giving of treatment may not be in the child’s best interests. For example, the child may develop or already have such a degree of irreversible impairment that it would be unreasonable to expect them to bear it. Continuing treatment might leave the child in a worse condition than already exists with the likelihood of further deterioration leading to an “impossibly poor life”. The child may not be capable now or in the future of taking part in decision making or other self directed activity.

It should perhaps be added that, at paragraph 2.3.1, the document states as a general axiom that:

“There is no significant ethical difference between withdrawing (stopping) and withholding treatments, given the same ethical objective.”

Dr N stated that, being of the opinion that K has no chance of survival into childhood without TPN, the medical team has reached a view with great confidence that K falls into category three. The team is also of the opinion that K falls into category four in any event.

This is a comparatively unusual case to come before the court in the sense that the declaration sought is non-contentious, all parties concerned being in agreement with the views of the medical professionals involved that life-prolonging treatment should cease. Indeed, I was told in the course of argument that, had the necessity for parental consent simply rested with the father and mother in this case, the matter would not have come to court, the medical professionals being satisfied that their ethical and legal obligations would not be breached by the action now proposed. However, the case is now before the court for decision, and the court is not tied to or bound by the clinical assessment of what is in K’s interests. The court must reach its own conclusion on the basis of a broad spectrum of considerations after careful consideration of the evidence before it: see Re T(A Minor) [1997] 1WLR 242 at 250 perButler-Sloss LJ; Airedale National Health Service Trust v Bland [1994] 1FRC 485 at 530; R (Burke) v GMC [2004] 3 FCR 579 per Munby J at paras [93] – [95].

As stated by Thorpe LJ in Re S (Adult Patient: Sterilisation) [2001] Fam 15 at 30E:

“In deciding what is best for the disabled patient the judge must have regard to the patient’s welfare as the paramount consideration. That embraces issues far wider than the medical. Indeed it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination”

Dame Elizabeth Butler-Sloss P made clear in the same case at p.28 that the principle of the “best interests” of the patient as applied by the court extends beyond the considerations governing the propriety and advisability of medical treatment developed in the Bolam Case [1957] 1 WLR 582 and

“The judicial decision will incorporate broader ethical, social, moral and welfare considerations.”

As stated by Hedley J in Portsmouth NHS Trust v Wyatt [2005] 1FLR 21 at para [23]:

“Best interests must be given a generous interpretation. As Dame Elizabeth Butler-Sloss P said in Re A (Male Sterilisation) [2000] 1 FLR 549 at 555:

… best interests encompasses medical, emotional and all other welfare issues.

… The infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in the definition of best interest.”

In Re A (Male Sterilisation) [2000] 1 FLR 549 at 560, Thorpe LJ commended the “balance sheet” method of assessment when considering the best interests of the patient. He stated that the court

“should draw up a balance sheet… of actual benefit… [and] any counterbalancing disbenefits … an obvious instance … would be the apprehension, the risk, and the discomfort inherent in the operation. Then the judge should enter…the potential gains and losses in each instance making some estimate of the extent of the possibility of the gain or loss might accrue …[in order to] be better placed to strike a balance between the sum of the certain and possible gains against the sum of the certain and possible losses. Obviously, only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests [of the person lacking capacity]”.

In Re L (A Minor) [2005] 1 FLR 491 at paras [12] – [13], Dame Elizabeth Butler-Sloss summed up the balancing process in words of particularly helpful application in this case. She said:

“The task therefore is for me to weigh up that which is sometimes called the “benefits and dis-benefits” but which I would prefer to call the advantages of giving or not giving potential treatments, and to balance them in order to decide the best interests of L with regard to his future treatment. I should like to refer to a passage in the judgment of Lord Donaldson in In Re J (A Minor) (Wardship: Medical Treatment) [1991] Fam 33 at 47:

There is without doubt a very strong presumption in the favour of a course of action which will prolong life, but … it is not irrebuttable… [A]ccounthas to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account is also to be taken of the pain and suffering involved in the proposed treatment itself…

We know that the instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life… [E]ven very severely handicapped people find a quality of life rewarding which to be un-handicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there are cases in which the answer must be that it is not in the interests of the child to subject it to treatment which would cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s and mankind’s, desire to survive.”

The reference to that which is “intolerable” has received echoes in subsequent cases involving the withdrawal or withholding of life-sustaining treatment. However, in paragraph [12] of her judgment in Re L, last quoted, Dame Elizabeth Butler-Sloss P put the matter thus:

“There is a strong presumption in favour of preserving life, but not where treatment would be futile, and there is no obligation on the medical profession to give treatment which would be futile. I agree with Hedley J [in Wyatt] that the court should be focusing on best interests rather than the concept of intolerability, although the latter may be encompassed within the former.”

Further, in Wyatt v Portsmouth NHS Trust and Charlotte Wyatt [2005] 1 WLR 3995, having reviewed the authorities and set out the “intellectual milestones” for the judge in a case of this kind, Wall LJ said at paras [90]–[91]

“We urge caution in the application to children of factors relevant to the treatment of adults, although some general statements of principle plainly apply to both. We repeat that R (Burke) v General Medical Council (Official Solicitor intervening) [2005] QB 424 concern the prospective withdrawal of A & H, competent adult patient. It was not concerned with what was meant by best interests in the context of the treatment of an incompetent child. At best, therefore, Munby J’s identification of “intolerability” as the touchstone of best interests is obiter….

We do not, however, dismiss “intolerability” as a factor all together. As we have already stated, we agree with Hedley J that whilst “intolerable to the child” should not be seen either as a gloss on or a supplementary guide to best interests, it is, as he said, a valuable guide in the search for best interests in his kind of case.”

In this case, it is quite clear that if TPN is withdrawn it will result in K’s death shortly thereafter. It is her life support. It is therefore vital to bear in mind that English law places a very heavy burden on those who are advocating a course which would lead inevitably to the cessation of a human life. In doing so, however, I take particular guidance from those passages in the judgments of Lord Donaldson of Lymington MR and Balcombe LJ in Re J (A Minor) (Wardship: Medical Treatment) at [1991] Fam 33 at 47 and 52 respectively, highlighted by the Court of Appeal in Wyatt at paras [71] and [74]. The first has already been set out at paragraph 46 above. The second reads as follows:

“I would deprecate any attempt my this court to lay down.. an all-embracing test since the circumstances of these tragic cases are so infinitely various. I do not know of any demand by the judges who have to deal with these cases at first instance for this court to assist them by laying down any test beyond that which is already the law: that the interests of the ward are the first and paramount consideration, subject to the gloss on that test which I suggest, that in determining where those interests lie the court adopts the standpoint of the reasonable and responsible parent who has his or her child’s best interest at heart.”

Given that K is presently stable and that the withdrawal of TPN will inevitably lead to death within a comparatively short time, Miss Laura Davidson for the Trust has rightly drawn to my attention two recent decisions concerning the withdrawal of treatment in cases where the patient’s condition was not imminently life-threatening providing that life-sustaining treatment continued, but where withdrawal of that treatment would cause death because the patients were incapable of surviving without it. In both, the court refused to sanction immediate withdrawl.

In W Healthcare NHS Trust v KH [2005] 1 WLR 834 (C.A.) the court was concerned not with a baby but with an adult who lacked capacity and had severe Multiple Sclerosis and a poor quality of life. She lived in a care home and had been fed by way of a percutaneous-gastronomy tube (PEG) for five years. She was admitted to hospital after her PEG fell out. Her family resisted a declaration sought by the Trust that it was in her best interests to re-insert it, because they believed that she would have wished to be allowed to die with dignity. The consequence of not granting the declaration would have been that KH would have died slowly of thirst and starvation, although her suffering would have been alleviated by drugs. As is made clear in paragraph [27] of the judgment of Brooke LJ, the judge came to the conclusion that in KH’s present state he could not say that life-prolonging treatment would provide no benefit and he found that death by, in effect, starvation would be even less dignified than the death that she would face in due course if kept artificially alive for more weeks, months or possibly years. In a short judgment, having reviewed the authorities, Brooke LJ stated at paragraph [29]:

“The judge, having rightly put on one side the question of whether there was a legally binding advance directive, looked, on the one hand, at the consequences of withdrawing nutrition and the effect this would have and, on the other hand, at the continuance of a life in which there is some feeling of pain, some sensation and some slight ability to answer questions. He came to the conclusion that it was in the best interests of the patient to accede to the unanimous wish of those who are responsible for her treatment.

As I have said, the Official Solicitor supports this application. These cases are always agonisingly difficult… but judges have to apply the law as they find it. English law, as it stands at present, places a very heavy burden on those who are advocating a course which would lead inevitably to a cessation of a human life. In my judgment, it impossible for this court to interfere with the judge’s judgment.”

It is persistently stated in the authorities that all cases of this kind are highly fact sensitive: see for instance per Wall LJ in Wyatt at paragraph [114]. There are a number of crucial distinctions between the facts of this case and those in the case of KH. In that case, it was the unanimous view of those concerned with the treatment of KH that the PEG should be re-inserted. Here the reverse is the case and the views of the medical advisers that nutrition should cease are endorsed by the parents and the local authority. In the case of KH she was a sentient adult. In this case, baby K is sentient, in the sense that she has some (uncertain) appreciation of what goes on around her, but her feelings and capacity to appreciate pleasure, pain, or the sheer sensation of “being alive” are those of a child with a developmental age of three months. She is a young and a significantly underdeveloped baby who has no power of speech and has no apparent purposeful movement.

In the case of KH, although unable to swallow and incontinent, there was no evidence of regular and continuing discomfort distress as there is in K’s case, as the result of her profound feeding problems, her cycle of repeated vomiting, and the invasive and prolonged use of TPN as a substitute for her nutritional needs. She can experience no form of pleasure or well being to be derived from ordinary ingestion of milk or food.

The more recent case of An NHS Trust v MB [2006] EWHC 507 (Fam) affords a much closer parallel to K’s case. MB suffered from spinal muscular atrophy, a severe form of degenerative and progressive neurological genetic condition. He was aged 10 months and had been unable to breathe without artificial ventilation for eight months. He could not swallow properly and had been fed by way of gastrostomy tube for four months. He also suffered from epileptic fits. The doctors responsible for his care wished to withdraw his endo-tracheal tube with the inevitable consequence that he would die within a few minutes because he would be unable to breathe. The application was however opposed by his parents on the grounds that, as the persons who knew him best and were constantly attendant upon him, they were convinced that he felt and could display pleasure and recognised his parents, brother and sister and that he could see, hear and take in certain television and DVD programmes and music on CDs which were played to him. They accepted that a number of the procedures to which he was submitted caused him discomfort and pain but thought that the doctor’s evidence to that effect was exaggerated. The judge considered the evidence and the benefits and burdens to MB drawn up in a “balance sheet” by the Guardian.

The judge addressed those benefits and burdens on the basis that MB was a child of 18 months who, despite his condition, had the size and development of the child of that age and that he had normal, age-appropriate cognition and power of thought as well as normal, age-appropriate capacity for moods and emotions, including the capacity to feel pleasure from the stimuli he received. He could both hear and see. The judge was satisfied that he could and did still feel touch and that, just as there was some touches which were painful and he did not like, there were others, particularly the stroking and handling of his parents and siblings, which he liked and which the judge assumed gave him a sense of pleasure.

The judge accepted the evidence of the parents that MB was attentive to TV, DVDs, CDs, stories and speech and that they gave pleasure to him. He also derived pleasure from his relationship with his parents and siblings, which pleasure was not short-lived or occasional but available to him as a constant part of his life for long periods of everyday. Although he had the absence of pleasures normally associated with childhood such as crawling, exploring, taking first steps, and playing with other children, he was left with a core of pleasure, in particular that derived from his relationship with his parents and family. Despite a long list of dis-benefits and burdens, including a number of periodical procedures which caused pain, and despite the fact that it was clear that MB was going to die within about a year (though possibly he might live longer or die sooner), the judge held at paragraphs [102]:

“I do not consider that from one day to the next all the routine discomfort, distress and pain that the doctors describe (but not the ones that I have now excluded) outweigh those benefits so that I can say that it is in his best interests that those benefits and life itself could immediately end. On the contrary, I positively consider that his life still does have benefits, and it is his life, which we should enable to continue, subject to excluding the treatment I have identified.”

I am grateful for the reference to that case. However, I do not consider that it precludes a different decision in the case of K. The factual differences readily appear from paragraph [106] of the judgment where the judge stated:

“I wish to stress that this is a very fact specific decision taken in the actual circumstances as they are for this child and today. These circumstances include, critically, the facts that he already has been and is on ventilation and has already survived the age of 18 months; he is assumed not to be brain-damaged; he is in a close relationship with a family that have spent and are able to spend very considerable time with him; and does already have an accumulation of experiences and the cognition to gain pleasure from them.”.

In this case K is less than 6 months old and has a developmental age of only 3 months. She has no accumulation of experiences and cognition comparable with that of MB. She is not, and with her short expectation of life is never likely to be, in a position to derive pleasure from DVDs or CDs and the only indication of real feelings of pleasure in her limited developmental state is enjoyment of a bath. On the evidence before me there is no realistic sense in which one can assign to her the simple pleasure of being alive or having other than a life dominated by regular pain, distress and discomfort and unrelieved by the pleasures of eating. Her muscular function is already severely diminished and any pleasure which might otherwise develop through increased activity and stimulation of the senses is denied to her. She has no prospect of relief from this pitiful existence before an end which is regarded as virtually certain by the age of one year and likely to be appreciably less. If her line is not removed she will continue to suffer pain and distress from the invasive treatment which she already experiences and the prospect is of the likely necessity for removal of her line in the near future which will merely add to her distress. If she were to have the necessary further surgical operation to replace the line, she would require mechanical ventilation which is also invasive and painful. There would be no improvement in her condition or improvement in her expectation of life. In these circumstances, I have no doubt that it would not only be a mercy, but it is in her best interests, to cease to provide TPN while she is still clinically stable, so that she may die in peace and over a comparatively short space of time, relieved by the palliative treatment contemplated, which will cause her neither pain nor discomfort and will enable her to live out her short life in relative peace in the close care of her parents who love her.

For those reasons I am content to grant declarations in the terms set out by me in paragraph 13 of this judgment.