DIRECTOR-GENERAL OF THE DEPARTMENT OF COMMUNITY SERVICES v "M" RE: HEATHER

DIRECTOR-GENERAL OF THE DEPARTMENT OF COMMUNITY SERVICES v "M" RE: HEATHER JUDGMENT - Ex Tempore 1 HIS HONOUR: This is an application which relates to the welfare of a girl who the court has ordered will be known by the pseudonym Heather. She was born on 1 September 1991. So she is a little over eleven at the moment. 2 In November of last year, she was diagnosed with a malignant tumour of the ovary, known as a yolk sac tumour. She was operated on and part of that tumour was removed. This happened in the month of the diagnosis, November 2002. She and her parents were given advice that ongoing chemotherapy was required. 3 The particular type of tumour she had is one called a mixed germ cell tumour. One of the characteristics of a tumour like this is that it is composed of different types of tumour cell. Some types of those tumour cells secrete a characteristic chemical which can be picked up by blood tests. Some types of them do not secrete any chemicals. Those blood tests can provide some indication of whether the tumour is growing or not, but because of the presence of those cells, which do not secrete the characteristic marker chemicals, blood tests are not a complete indicator of the growth of the tumour. 4 In December of last year, the child's parents took her to Melbourne where they consulted various doctors in the hope of being able to find a treatment regime which did not involve chemotherapy. They consulted a doctor called Dr Noel Campbell, and no report from him is presently before the court. Dr Campbell recommended that they consult another Melbourne doctor, Dr Ballard. Dr Ballard recommended that the chemotherapy treatment should continue. Dr Ballard referred the family to yet another doctor, Dr Sullivan. Dr Sullivan also made a recommendation that the child should return to the area where she lived and proceed with chemotherapy. 5 Dr Alvaro is a Newcastle doctor who had initially been one of the specialists who operated on the child. He had been expecting in January that the advice which had been given about ongoing treatment would result in her returning to see him. When she did not return, he expressed some concern in a letter, which he wrote on 29 January to the family GP, who I will refer to as Dr "P". In that letter, Dr Alvaro expressed the view that the chance of a cure with the chemotherapy was of the order of eighty-five per cent. He stressed that this was not one of the statistics one sometimes encounters when dealing with cure rates in cancer, which are concerned with the prospects of the patient surviving five years. He stressed that this was a prospect of actual cure. 6 On 7 February, Dr "P" saw the child. Dr "P" has reported that he was told by the child's father that he had been seeking another opinion from Dr Noel Campbell in Melbourne, that Dr Noel Campbell was a medical practitioner who used alternative methods to treat cancers and that he had had demonstrable success. Dr "P" advised that the treatment proposed by Dr Alvaro should be continued. He found that the family were very resistant to that suggestion, particularly to the concept of chemotherapy. 7 The evidence before me says little about what happened in the next few months. The next event which appears in the evidence is that on 5 May DOCS received a child protection report from a social worker at a Newcastle Hospital expressing urgent concern that necessary medical care for the child had not been arranged. After receiving that report, the DOCS officer handling the matter contacted Dr Ballard. Dr Ballard passed on the information that he had seen the family over a space of three weeks in January, that he had recommended chemotherapy, referred the family to Dr Sullivan and that Dr Sullivan had also recommended chemotherapy. 8 As part of their information gathering, DOCS also contacted Dr Alvaro. He reported that he had tried to contact the father on his mobile phone on numerous occasions without receiving a reply from him, and he said that he had sent the family a letter at the end of January outlining his concerns about the child's therapy for the tumour. It should be said in this context though that there is evidence that the place where the family live is out of the range of mobile phones. That does not completely explain the father's failure to contact Dr Alvaro. Another part of the explanation, however, was that the child's father had formed the view that he did not like Dr Alvaro's attitude in treating his daughter. 9 On 12 May, DOCS was informed that the previous Friday Dr "P's" partner had performed some blood tests on the child, at the request of her father. The results of those blood tests showed that the tumour markers had increased grossly. 10 On 15 May, there was a discussion between a DOCS caseworker and the child's father where he explained the treatment regime she had been on. He said that she had been on a strict diet and she was having ozone therapy or oxygen therapy. He explained that that was something which she had in a sauna forty-five minutes a day, that it operated at forty degrees and opened the pores up and then oxygen was pumped in. He said that this was a treatment that was recognised by Dr Alvaro, the basis of which, he explained, being that bugs didn't live in oxygen. He said that she was also having electrotherapeutic treatment using a machine - that they had discovered that every cell shatters at a certain frequency and with that therapy they can target the bad cells, set the frequency to shatter the bad cells, and it does not hurt the good cells. He explained that the family was going to see Dr Campbell the following week. He said that they would need to have the equipment checked and, given the latest results (from the blood tests), they would then have to get a complete review. He also said that they were planning on a new treatment from Ireland which involved injecting a dye which sticks to the cancer cells and then is treated with a laser. He was asked what his thoughts were on chemotherapy and said that they were prepared to look at any options. He also said that he wanted evidence that the chemotherapy would work, that he had asked for that evidence from Dr Alvaro but not got it. He also made clear that he was reluctant for the child to have chemotherapy because of the lack of information available. He expressed the view that chemotherapy is poison and kills as many good cells as bad, that it does the same amount of damage as it did good. 11 As well, he said that his daughter had expressed the view that she didn't want to have chemotherapy. He made clear that he realised that with the latest blood test he knew that something different had to be done. He recognised that while the treatment that the child had been having had been working for a while, it had got to the point where it was not working. He said he was planning to see some other doctors. 12 On 20 May the child and her parents went to Sydney for an assessment at Sydney Children's Hospital with Professor Marshall. Professor Marshall is an Associate Professor in the School of Paediatrics at the University of New South Wales and Centre Director at the Centre for Children's Cancer and Blood Disorders at the Sydney Children's Hospital, Randwick. Professor Marshall at that stage expressed the view that delaying treatment could decrease the chance of a cure from eighty-five per cent to less than fifty per cent. 13 At the time the family saw Professor Marshall they were on their way to Melbourne to see other medical practitioners there, and to have the machine which they had been using for treating the child checked. They had a concern that it had stopped working properly. 14 They had made an appointment to see Dr Marshall again on 26 May, but cancelled that appointment and made another one for 29 May. Dr Marshall saw the child on both 29 and 30 May. He has set out what happened on those occasions, and the views he formed, in a report to Dr Alvaro dated 30 May 2003. On that occasion a CT scan was carried out which showed a large mass seven by five point five by five centimetres arising in the lower pole of the spleen. There was another smaller mass of one point five centimetres in the left groin. There was no tumour at the original primary site and her chest was clear. 15 These two masses which showed up on the CT scan were a recurrence of the cancer. Dr Marshall explained to the child and her parents that it was imperative to begin chemotherapy within the next week to shrink the mass. Particularly with the mass in the spleen, there was a risk of it bleeding into her abdominal cavity and if that happened it would threaten the child's life. The parents said that for the past week the child had developed some vomiting and had not been eating well. Dr Marshall recognised these as being likely symptoms of the tumour in the spleen. 16 He gave the father two articles which he considered the most recent clinical trials describing the outcomes for children with germ cell tumours. He explained that with the stage the cancer had reached the prospects of survival of the child had reduced from those which they originally were, but that they were still of the order of seventy to eighty per cent. Again, this statistic which he was quoting was a statistic relating to cure, in the sense that she would grow to be a normal, healthy adult. He explained that more delay in starting therapy might result in new metastatic cancer and that that would further reduce her chance of cure. 17 He outlined a treatment plan for treatment with chemotherapy followed by surgery to remove the tumour which remains. He explained what was involved in the treatment, namely, three to four day hospital admissions each three weeks. He explained the side effects of chemotherapy such as alopecia, nausea, vomiting, bleeding, infection, peripheral neuropathy, second cancer, lung fibrosis and anaphylaxis. He gave his estimate of the risk of death or serious morbidity from chemotherapy as being one to three per cent. He explained that she would require supportive care therapy for infection and that that could be managed near her home or at a child cancer centre. He explained that after the operation she would need a further two to three cycles of chemotherapy depending on the results of scans, blood tests and the operation itself. He had considered whether further biopsies were needed to further diagnose the cause of her symptoms, but had come to the view that they were not needed. He also explained that he had no objection to the parents continuing non-conventional therapies during the chemotherapy. 18 On 30 May he formed the view that the child didn't look well and that she was pale and seemed to be in pain. Though he requested a blood test be carried out at that time the child refused. He arranged that a blood test would be carried out by the family GP within the next few days instead. 19 At that meeting the child's father was very reluctant to agree to the child commencing chemotherapy. Professor Marshall stated his view, that if she didn't begin chemotherapy within the next week she might have serious and life-threatening complications. Her father said that he wanted to read the medical articles he had been given and to discuss them with various advisers that he had. Professor Marshall expressed the view that failure to comply with his request to treat the child within the next five days could place her life in jeopardy. 20 Nothing was done over that period of five days to start the course of treatment for the child. On 5 June the court made orders ex parte, on the application of DOCS. They were orders which named the child's parents as defendants. So far as is presently relevant there was an order to present the child to a particular Hospital near where the family lived, within two hours of service of the orders. There was also an order, number 10, in the following terms: "The plaintiff and or his delegate be empowered from time to time to authorise the carrying out of such medical procedures and treatments on the child as he or she may on medical advice consider proper or desirable in the interests of the child." 21 There was also an order that until further order the plaintiff was to have the care, custody and control of the child. 22 There were some attempts made to serve those orders on 6 June, but unsuccessfully. In the course of trying to serve the orders an officer from DOCS provided a copy of the orders to the grandmother of the child. She was not able to assist with information about any way in which the parents of the child could be contacted. 23 It is apparent from the terms in which the solicitors for the parents have instructed an expert witness that they had some knowledge of these proceedings on Friday 6 June. The evidence does not lead one to draw any conclusions about the extent of that knowledge however. 24 On Saturday 7 June the court made further orders. One of them was that the child be made a ward of the court. Another was that any person served with a copy of the orders should provide forthwith to any police officer or officer of the Department of Community Services all information that that person had concerning the whereabouts of the child, the parents of the child or the siblings of the child. As well all police officers and officers of DOCS were authorised to take all reasonable steps to bring the child within the care, custody and control of DOCS including using all reasonable force against any person or property stopping any vehicle or vessel suspected of containing the child or any person who might have knowledge of her whereabouts or entering any premises in which it was reasonably suspected the child might be. An order was also made that any person who is made aware of these orders and who was capable of doing so should forthwith deliver the child to the nearest hospital or police station. 25 Both sets of orders were served on Tuesday last, 10 June. This was done at the offices of the solicitor of the parents of the child, and pursuant to an arrangement which had been made so that service could be effected there. It was the father only who was served at that time. 26 On that day, the matter also came before me as duty judge. The defendants were represented and as well, there was a separate representative for the child. On that occasion, I set a timetable for the putting on of evidence and inserted a proviso in order 10, which had been pronounced on 5 June, such that actual administration of chemotherapy would not begin until 4.00pm today. I also modified the order requiring delivery of the child to the named hospital to one requiring her to be delivered forthwith to either of the two hospitals in the area where the family lived. 27 The child was delivered to one of those hospitals yesterday. She was taken to the Children's Hospital in Sydney by ambulance, and Professor Marshall saw her there this morning. She had arrived at the Children's Hospital at approximately 6.00pm yesterday. 28 This morning Professor Marshall has provided a report to the court saying that blood tests had been taken, which did not show any abnormality requiring urgent action. She was not in pain from the tumour mass, had not been vomiting and did not have any gastrointestinal upset. He examined her and formed the view that the mass had almost tripled in size during the past three weeks. He said he had been unable to feel the spleen mass two weeks ago, but that now it can be both seen and felt as a swelling occupying most of the left upper quadrant of her abdomen. He detected reduced air entry to the lower left lung and dullness to percussion. Those observations might come from two different sources: one is upward pressure from the enlarged spleen or mass on a normal lung; the other is development of cancer in the lung itself. 29 The doctor reported that both the child and her mother were unwilling for the child to have a CT scan this morning until her father arrived. I was informed by counsel for the parents that this attitude which the mother had expressed was the result of a miscommunication between herself and her husband. Professor Marshall has agreed to wait to do the CT scan after discussions with the child's father later today. Some other tests, which are a necessary preliminary for any chemotherapy which might be carried out, have been done. There are some others which will need to be done, including a nuclear scan to assess her kidney function, but that is something which Professor Marshall is planning to do tomorrow. 30 Professor Marshall's report of today expresses the view that: "The rapidity with which the tumour has enlarged leaves me in no doubt that [the child's] life is threatened and that she will develop symptoms from the tumour very soon. My major concern in the short term is the potential for her to suddenly die from intra-abdominal haemorrhage. Being in hospital cannot be a protection enough against this outcome. I would not change my estimate that her long term prognosis for cure, the treatment plan or incidence and nature of side effects stated in my letter to Dr Alvaro of 30 May 2003. I remain deeply concerned that if [the child] does not receive chemotherapy within the next few days, she may die of the effects of the tumour resulting in blood loss." 31 The parents have placed on affidavit two types of material. One is a lengthy affidavit, which her father swore on 10 June 2003, which gives a very detailed account of the progress of the child's disease and of the advice received from time to time. It is quite clear that someone who was able to produce at short notice all the material contained in this affidavit has been dealing with the problem with all the seriousness it deserves, so far as gathering information is concerned. He expresses a view in that affidavit that he is concerned that if his daughter is hospitalised, she will give up her fight against the cancer. He also asks that there be no order permitting chemotherapy until such time as he has been able to put appropriate medical evidence to the court, which he needed further time to do. 32 He annexed to that affidavit some material explaining the kind of work which Dr Campbell and Dr Ballard did in Melbourne. 33 The second type of material which was put is the results of a preliminary inquiry made by the defendants' solicitors to an English doctor, Dr Julian Kenyon. Dr Kenyon is a medical practitioner who is connected with an organisation called The Dove Clinic for Integrated Medicine. He says that he has read through all the material which was faxed to him concerning the child's case. He also says that: "Current evidence indicates that a chemotherapy regime followed by surgical resection of the recurrence offers an 80-85 per cent chance of cure." 34 He says that he is familiar with both the use of ozone, and the use of the machine, a rife machine, which has been used to treat the child. He says that so far as he is aware there are no clinical studies on the use of the rife machine in cancer. He says that ozone is often used as an adjunct in the treatment of cancer but not as a stand alone treatment. He says that there are many anecdotal reports about the rife machine but it is impossible to be clear about the veracity of many of them. He has had some success with that machine in some cases. He expresses the view that the present treatment regime is not working, that she has had a recurrence and her chances of death from her recurrent malignant ovarian germinoma was high. He says that, therefore, a cytotoxic approach of some sort is needed, followed by surgery. He recommends two particular types of cytotropic treatment. One of them is high doses of intravenous vitamin C. Another is the use of a chemical called Ukrain. He says that there are no studies specific to ovarian germinoma with these approaches and, therefore, they would have to be given by "informed consent". He says that they may satisfy the oncologist's requirements, although they are "not strictly evidence-based". He points out that those approaches do not carry the risks of the side effects which are part of a conventional chemotherapy routine. He accepts that conventionally these approaches would be regarded as experimental. 35 Dr Kenyon's qualifications he states as being MD, MB, ChB. The material annexed to the affidavit discloses some medical papers which he has written. 36 The counsel for the parents seek to have a regime established whereby chemotherapy will not start until Dr Kenyon has been provided with the most recent reports from other doctors, Dr Kenyon has responded to those reports, and the court has had the opportunity to further consider the matter. The child's father also wants the opportunity to explore the availability in Australia of the alternative treatment which Dr Kenyon had proposed. He wants to be able to follow every possible option which is open, before making a decision. 37 There can be no doubt that subjecting a child to chemotherapy treatment is a very serious form of medical treatment. It is to be expected that it will have the side effects which were outlined by Professor Marshall and the risks which Professor Marshall outlined to the parents on 29 and 30 May. The side effects, and the risks, are not the sort which anyone would willingly expose a child to if there were any choice. 38 One needs to balance against that, however, the likely consequences of inaction. Inaction is likely to result in the death of the child. Even though there will be discomfort and unpleasant side effects like hair loss arising from chemotherapy, there is also discomfort which cannot be completely managed in the process of dying of cancer. Nor is there any choice open besides chemotherapy, or inaction. There is no sound basis shown in the present evidence for believing that Dr Kenyon's proposal for a method of treatment will work, or that it is available in Australia. No other treatment regime has been proposed by any doctor, according to the evidence. 39 The time for delay and research concerning this problem has already, it seems to me, gone by. In my view, the extreme urgency of the child's condition justifies the court making an order which enables chemotherapy to be administered to her. 40 I am conscious that this is a course which is being embarked upon at a time that there has not been the full opportunity that there is in litigation about less urgent matters for every side to explore every aspect of the evidence they wish to put on. That is a factor which I have thought about carefully before deciding it is appropriate to make this order. However, any decisions which the courts make about the welfare of children are necessarily decisions which are provisional ones. There is nothing to stop any order which I make today being reconsidered if evidence emerges to show that there is good reason to stop the course of treatment which the child is undergoing. 41 However, the overwhelming preponderance of the medical evidence as it now stands is in favour of the treatment. The doctors in favour of it are Dr Alvaro, Dr Sullivan, Dr Ballard and Professor Marshall. Professor Marshall has vast experience in this field and publications which take pages to list. Dr Kenyon agrees that some form of chemical treatment followed by surgery is needed, and differs only as to the type of chemical which should be administered. The case which he is able to present for the use of those chemicals seems, on the present evidence, to be thin. He himself concedes that the cytotoxic potential which they have is not strictly evidence-based, and that their use would need to be regarded as experimental. I noted with some concern that one of the chemicals he proposed using, Ukrain, is one which he describes as being: "Patented and licensed for use in many European countries but not yet in the UK."

There is no evidence that Dr Kenyon's proposed treatment methods are available in Australia. 42 The Department has obtained instructions on the basis of which it asks the court to note that the staff of the Children's Hospital will provide to the defendant results of all tests conducted upon the child in the normal course of treatment of the child. Those results will enable the parents to continue to seek other opinions about the appropriateness of the treatment which is being given to their daughter. 43 In these circumstances, I am not persuaded that it is appropriate to modify any of the orders which the court has previously made. The proviso to Order 10 made on 5 June 2003 has ceased to have effect by effluxion of time. 44 There is evidence that the solicitors for the defendants have today sent to Professor Marshall a letter which says: "This letter is to provide you with notice that we are being instructed by our clients that they do not agree to their child being subjected to chemotherapy treatment. We are advised, however, that our clients are willing to submit the child to chemotherapy if that is the order of the court but advise that our clients demand that you accept full liability for the consequences of the chemotherapy treatment. We advise that in the event that the chemotherapy treatment results in the death or injury to the child that we are to commence legal proceedings against you personally seeking damages." 45 The solicitors have also sent a letter to various fax machines throughout the Sydney Children's Hospital, addressed to "all hospital staff", which repeats those statements. 46 When a child has been made a ward of the court the responsibility for making that decision about whether treatment should occur has been taken out of the hands of the parents. The fact of these letters being sent means that it is desirable, however, to not only have the general order which was contained in clause 10 of the orders made on 5 June but also a more specific order. I order that the court authorises the carrying out of medical procedures and treatment on the child including: (1) the administration of chemotherapy to the child; (2) the carrying out of all medical tests, scans and taking of samples which are ancillary to the administration of chemotherapy; and (3) the carrying out of all necessary ancillary medical procedures to the administration of chemotherapy. 47 There is another matter which I should mention as one which I have taken into account. A separate legal representative was appointed for the child. A solicitor acting as that legal representative spoke with her today. The child said that she was reluctant to commence chemotherapy, that she "wishes to continue with the regime we have in place at the moment", that she has had the consequences explained, and "wishes to continue with what we have decided". 48 The separate legal representative has expressed the view to the court that notwithstanding those views which the child has expressed, it is in the best interests of the child for the chemotherapy to occur. 49 It is clear that it is open to the court in exercise of the parens patriae jurisdiction to make a decision even when it is a decision contrary to the views which a child has expressed (see Director General, New South Wales Department of Community Services v Y [1999] NSWSC 644). While the wishes of a child of eleven near twelve are ones which it is proper to take into account, the fundamental test must be what is in the best interests of the child and in light of the evidence which is before the court now there can really only be one answer to that question. 50 The treatment is treatment which has risks and has side effects, but the magnitude of those risks and the nature of those side effects are such that when compared with what will happen if there is inaction there can be no real doubt what is the proper course to take. 51 For those reasons I make the order which I have earlier indicated. The court notes that the staff of the Centre for Children's Cancer and Blood Disorders at Sydney Children's Hospital will provide to the defendants results of all tests conducted upon the child in the normal course of the treatment of the child. 52 So that it is quite clear, all the orders which were made on 5 June and 7 June remain on foot. That includes the order that the parties have liberty to apply on four hour's notice. That liberty to apply will mean that if any evidence turns up which makes a significant difference to the balance of evidence as it appears at this moment, that evidence can be placed before the court. **********

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