Secretary, Department of Health and Community Services v JWB and SMB

Judgment 1HIS HONOUR: These proceedings concern a profoundly disabled girl currently aged ten who for the purposes of these proceedings has been called Natalie. 2Natalie suffers from a neurological condition called porencephaly. At birth she was diagnosed with hydranencephaly, which is a severe form of brain malformation whereby more than 90 per cent of her brain cortex was replaced with cerebral spinal fluid. 3Initially it was thought unlikely that she would survive more than a year. She has profound cognitive delay. It is estimated that she functions intellectually at the level of a six to 12 week-old baby. She suffers from numerous medical complications associated with this condition. She is almost blind, although it is said that she can tell the difference between light and dark and that she can follow a torch in a dark room. She is unable to speak or communicate otherwise than by primitive reflexes. 4Since she was 12 days old Natalie has been in the care of the second defendant who states that Natalie may show emotion by smiling, crying or making grunting noises. She suffers from epilepsy, hypertension and frequent seizures. 5 Dr Alison Reid, a neurologist, said that Natalie suffers from partial complex seizures, averaging one to six daily. She has severe spastic quadriplegic cerebral palsy and suffers from viral and bacterial respiratory infections. She suffered a severe illness in September 2003, following which she became unable to suck or take in foods by mouth. She is fed through a PEG tube. 6The doctors and others involved in Natalie's treatment are agreed that it is remarkable she has lived as long as she has and that this is due to the quality of the care with which she has been provided by the second defendant. Dr Reid states that Natalie has only rudimentary neural structures, including some cerebellum and the brain stem and that she stays alive because there are functioning centres in the brain stem which are responsible for the continuing beating of the heart and for continuing respiration. 7Natalie produces excess mucus as a result of her medications and she can not swallow effectively. She requires suctioning of the excretions in order to prevent her from choking. The second defendant needs to suction Natalie regularly, that is to say on a moment-to-moment basis. 8Her treating paediatrician, Dr Christopher Ingall, deposes that she suffers in pain for at least an hour out of every day. She is given drugs to alleviate this but with variable results. She has been admitted to hospital on many occasions with respiratory-related illnesses. 9Natalie's natural mother relinquished care of Natalie to the Department of Community Services, as it was then known, shortly after her birth. She was then placed in the foster care of the second defendant. The Department of Community Services, in consultation with Dr Ingall and the second defendant, prepared an End of Life Case Plan in 2009. A number of caseworkers participated in the preparation of the plan. The child's natural mother had the opportunity also to participate. 10It was unexpected that Natalie should have survived as long as she has. Dr Reid says that every day of her life Natalie is at risk of complications of her condition and is at particular risk of sudden death on account of her epilepsy. She is at risk of further sepsis, and there is a possibility that the centres in her brain stem regulating her heart and lung functions will fail. Dr Ingall is also of the view that Natalie is at high risk of respiratory infections and complications. 11In the End of Life Case Plan/Advanced Care Directive prepared in July 2009 by the Department, there was an agreed objective to ensure that Natalie has a dignified comfortable death with as little suffering as possible. It was agreed that in the event of cardiac pulmonary arrest, it would not be appropriate for cardiopulmonary resuscitation, intubation or ventilation to proceed. 12The Director General of the Department of Family and Community Services has instituted these proceedings seeking orders that, in the event that Natalie suffers a cardiac arrest, her treating medical practitioners, paramedics and nurses be authorised to not resuscitate her and, for this purpose, they be authorised to not apply or use external cardiac massage, apply or use DC countershock, give adrenaline by any means, intubate and/or ventilate Natalie, unless they consider such treatment appropriate given Natalie's prevailing clinical situation. An order to the same effect is sought in the event that Natalie suffers respiratory arrest or another life-threatening event such as a prolonged seizure or aspiration. 13The orders proposed provide that she be provided with all medical care and treatment directed towards the preservation of her life and the promotion of her health and welfare up to the point of her suffering a cardiac arrest or respiratory arrest, or another life-threatening event such as prolonged seizure of aspiration. For the purpose of implementing those orders, an order is sought that Natalie's treating medical practitioners be authorised to put in place a "not for resuscitation" order and a "no pulmonary resuscitation" order and a "non-ventilation" order in relation to Natalie. 14On 8 February 2012 an adoption order was made in relation to Natalie in favour of the second defendant. That is to say, the second defendant became Natalie's adoptive parent. She now has parental responsibility for Natalie. The second defendant supports the orders sought by the Director General. 15I do not think that there is any issue as to the Director General's standing to continue these proceedings, notwithstanding the making of the adoption order. In any event, I am advised that if I were not satisfied that the Director General had standing to continue the proceeding, the second defendant herself would seek to proceed as co-plaintiff. I do not think it necessary to make an order that the second defendant be joined as co-plaintiff because I think the Director General has standing to pursue the application. 16The reason that the orders are sought is essentially that if Natalie suffers from cardiac arrest or respiratory arrest, the intervention that would be necessary to preserve her life would be productive of additional pain and suffering to that which she currently experiences without any countervailing benefit. 17If Natalie suffered a cardiac arrest and cardiac massage were applied, for it to be of any benefit, the treatment would certainly result in the fracture of her ribs. These are very fragile. It would probably also result in the fracture of her sternum. If she were intubated and given ventilation, in the doctors' opinion, it would become impossible for the ventilation to be withdrawn, or at least extubation would prove impossible. Natalie would become confined to a hospital or a similar institution where she was dependent on the ventilator. In the opinion of Dr Ingall which I accept, she would need a line in her artery and a drip. It would be highly unpleasant. The removal of secretions is already an unpleasant experience for Natalie. It would be more painful, indeed highly painful, according to Dr Ingall, for her secretions to be removed when she was intubated. 18Dr Reid said that in her view no matter how one viewed the quality of life, it was an indisputable fact that Natalie presently has no quality of life. She asked herself the question: How then could Natalie be worse off than she is now? Dr Reid answered that question by saying: "This situation could arise, if in the event of a cardio pulmonary arrest resuscitation and ventilation were attempted. It is virtually guaranteed that extubation would prove impossible. [Natalie] would require tracheostomy and remain ventilated-dependent, institutionalised, and alone." 19If she survived the cardiac arrest, her clinical status would be worse than it is at present. Dr Reid also said: "If however she were to suffer the complication of a cardio pulmonary arrest she would not be managed with external cardio massage or DC counter-shock. These measures would increase her pain and suffering and if she were to survive her clinical condition would be worse than it is at the present time." 20She said that "extreme resuscitative measures are guaranteed (were she to survive) that she will go on living in a clinical state worse than the present (sic)". 21This application is brought in the Crown's parens patriae jurisdiction. That jurisdiction is exercisable, notwithstanding that Natalie is not a ward of the court (see Secretary, Department of Health and Community Services v JWB and SMB [1992] HCA 15; (1992) 175 CLR 218 at 280 and Re Paul [2008] NSWSC 960 at [5]). 22It is within the parental responsibility of the second defendant for her to decide whether or not, in the circumstances that pertain in the present case, consent to resuscitative procedures should be given or withheld (see Re Baby D (No 2) [2011] FamCA 176; (2011) 45 FamLR 313 at [224], [225], and [227]-[229]). 23The question therefore arises as to why the court should intervene. It was not suggested on the second defendant's behalf that this might be one of those unclear cases where there may be real doubt as to whether a parent could make the decision on behalf of the child that the medical practitioners be asked not to resuscitate Natalie in the event of a cardiac arrest or respiratory failure, or, to put it another way, to withhold consent on Natalie's behalf to such intervention. Likewise, I think it would have been within the parental responsibility of the Minister, who formerly had parental responsibility for Natalie, to make this decision. Nonetheless, the Director General considered that the court should be asked to make the orders sought. I think that is understandable. I think there are two reasons as to why I should proceed in this case to exercise the jurisdiction that is invoked. 24The first is that the medical practitioners may be in real doubt as to whether they should act on a decision of the second defendant authorising them not to resuscitate Natalie if she suffers a cardiac arrest or respiratory arrest or other life-threatening event. They may consider in an emergency that they should not do so in the absence of an order from the Court making their position clear. In that respect the orders will clearly provide that they give an authority to medical practitioners and others not to take interventionist steps in the event of cardiac arrest or respiratory arrest or other life-threatening event, unless they consider that treatment to be appropriate given Natalie's then prevailing clinical situation. In other words the orders provide an authority which is itself subject to those medical professionals' clinical assessment. They are not a direction as to how doctors and others must act. 25The second reason why I think the jurisdiction ought to be exercised is that, as was put by counsel for Natalie, notwithstanding the second defendant has assessed it to be in Natalie's best interest that she not be resuscitated, her emotional attachment to the child might make it difficult for her to make that decision in Natalie's best interests when the time for decision arrives. 26The real question both as to whether I should embark on the exercise of jurisdiction and in the exercise of the jurisdiction is what is in Natalie's best interests. I agree with the submissions of all counsel that it is in her best interests for the jurisdiction to be exercised. 27The case is similar to that of Re J (a minor) [1993] All ER 930. There, Lord Donaldson MR quoted with agreement a passage from a judgment of McKenzie J in Re Superintendent of Family and Child Service v Dawson (1983) 145 DLR 3 d. 610 at 620-621: "... the Court must decide what its ward would choose, if he were in a position to make a sound judgment ... [i]t 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 (sic) if that standard is not met in his estimation. The decision can only be made in the context of the disabled person viewing the worthwhileness or otherwise of his life in its own context as a disabled person-and in that context he would not compare his life with that of a person enjoying normal advantages." 28Lord Donaldson pointed out that what is in issue in these cases is not a right to impose death, but a right to choose a course of action which will fail to avert death (at 936). His Lordship stated (at 938): "... even very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability but in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's, and mankind's desire to survive." 29I am satisfied that if the steps were taken to attempt to resuscitate Natalie if she suffers a cardiac arrest or if she suffers respiratory arrest or another life-threatening event, the result would be to cause her increased suffering with no commensurate benefit. That is clear on the evidence in the case of any of the steps involving external cardiac massage, the application of DC counter shock, intubation or ventilation. 30It is not so clear on the evidence in relation to the application of adrenaline but as I understand Dr Reid's evidence the necessary resuscitative measures would result in Natalie moving to a worse clinical state than she suffers at the present. In the case of a cardiac arrest the brain will be impaired after as little as three minutes. In Natalie's case there is very little brain function left. Cardiac arrest that resulted in any further diminution of her brain function, even if she survived, would have to leave her in a worse state than she is at present with increased suffering. 31In the exceptional circumstances of this case and having regard to the extent of the child's disabilities, which are profound, and having regard also to the fact that the second defendant, who has provided such high quality care for Natalie that it has attracted great praise from the doctors who have given evidence, sees that it is in Natalie's best interest that she not be resuscitated in the event of such life-threatening events, I am satisfied that in this case the orders sought should be made. 32I make orders in accordance with the short minutes of order which were handed up by counsel for the Director General with the following amendments: