Solicitors:
NSW Ministry of Health (Plaintiff)
Legal Aid (First Defendant)
Kathryn Renshaw Lawyers Pty Ltd (Second Defendant)
Ken Cush & Associates (Third Defendant)
File Number(s): 2024/94680
[2]
JUDGMENT
On 12 March 2024, Parker J made an order that the title of this matter is H v OL & Ors. H is a hospital in New South Wales. OL, the first defendant, is a female minor born in 2009. She is almost 15 years of age. The second defendant is OL's mother. The third defendant is her father.
On 14 March 2024, Parker J made an order appointing a solicitor as the independent legal representative for OL. Counsel was briefed and submissions have been filed.
In the summons filed on 12 March 2024, H has requested this Court to exercise its parens patriae jurisdiction to enable H's medical practitioners and staff to provide medical treatment to OL. The parens patriae jurisdiction dictates that the Court base its decision on the best interests of the child and on no other consideration.
Absent the proposed medical treatment, OL has a life expectancy of 2 to 4 weeks.
The order sought is opposed by the second and third defendants. They were separately represented but advocated the same result.
The independent legal representative supports the orders sought by H. Suffice to say that the unique position of a person appointed specifically to represent the child, demands special consideration of the representatives' recommendations.
Five affidavits were filed in the proceedings:
1. FP affirmed on 12 March 2024;
2. FP affirmed on 14 March 2024;
3. Dr KD affirmed on 12 March 2024;
4. Dr KD affirmed on 18 March 2024; and
5. The second defendant ("the mother") affirmed on 17 March 2024.
In addition to the affidavit evidence, I also heard oral evidence from four doctors whose reports were attached to the affidavits.
FP is a legal practitioner employed by the New South Wales Ministry of Health. Dr KD is a staff paediatric oncologist working at the hospital. She is currently responsible for the oncology care of OL.
OL was referred to Dr KD by the staff specialist paediatrician at a Base Hospital in rural New South Wales.
The reason for the referral was that tests had revealed abnormalities in OL's blood. On 5 March 2024 OL was diagnosed with "Pre B Acute Lymphoblastic Leukemia" which is a blood cancer referred to as ALL. In her affidavit Dr KD expands on OL's already existing medical problems. She says they include:
"a. SCN8A mutation which causes epilepsy and encephalopathy (brain dysfunction);
b. Drug resistant epilepsy;
c. Developmental and epileptic encephalopathy ("DEE");
d. Severe developmental delay; and
e. Autism Spectrum Disorder ("ASD") level 3 resulting in limited communication and difficulties with behaviour making basic examination very difficult at times."
The mother, in her affidavit, gave the above pre-existing problems some historical and practical details:
1. OL had her first seizure when she was about eight weeks old. When she was 18 weeks old, she was diagnosed with treatment resistant epilepsy;
2. in 2016 she was diagnosed with DEE. The effects of DEE include "severe intellectual disability, severe global developmental delay, communication difficulties, pharmacoresistant seizures, behavioural difficulties, and increased risk of sudden unexpected death in epilepsy." These symptoms are confirmed in a report of Dr ST, a clinical geneticist, which is annexed to the mother's affidavit;
3. OL's development age is 18 months to 3 years. I note that Prof EN in his oral evidence suggested a development age of 16 to 18 months;
4. OL has seizures every day, although not necessarily the same number each day;
5. at present OL is having 7 to 10 seizures per week but "she may experience up to 6 seizures, within a single cluster, per day". There has apparently been a lessening of the number of seizures while OL has been in hospital. There is no known reason for the decrease and an increase is just as likely. I was informed that OL had two cluster seizures on 17 March 2024;
6. in relation to behaviour "as she has grown older and become physically bigger, it has been increasingly difficult to persuade her to be medically examined or receive medical attention and has required to be physically restrained";
7. her challenging behaviours have worsened in recent times since her hospitalisation. They seem to get worse the longer she remains in hospital. On one occasion "it required three nurses, OL's stepfather, and myself to physically restrain her. We forcibly held her down and a play therapist was present in an attempt to distract her. This was very distressing for OL";
8. on 4 March 2024, OL had to be forcefully held in place for two hours to enable a blood transfusion. On another occasion she was given a general anaesthetic to enable a transfusion;
9. OL has to be restrained in order for medication to be administered through a PIC line (a PIC line is a peripherally inserted central catheter);
10. since admission to hospital OL has pulled out two cannulas from her arm. She has also removed a nasal gastro tube; and
11. the mother says that she is very worried about the insertion of a portacath (described below).
The recommended treatment regime is debilitating, intrusive and will extend over two years and three months. It has a 90% chance of achieving "survival". The regime will involve the following:
1. six to eight months "of intensive treatment for which they (the mother and step-father) would need to remain close to the hospital followed by a further 16 months of less intensive treatment which could be facilitated closer to home";
2. chemotherapy would be administered intravenously as well as orally and via a tube into the stomach. Some of the chemotherapy will be given under general anaesthetic;
3. besides chemotherapy OL "will require supportive care medications including antibiotics, pain relief, behaviour modifying agents" and other medications; and
4. the treatment will include a lumbar puncture, bone marrow aspiration and insertion of a portacath to enable intravenous introduction of medication. A portacath is "a line inserted by a surgeon under anaesthetic with a chamber under the skin and line inserted into a large vein, used to deliver chemotherapy, fluids, other medications, blood products and to take blood." The portacath will not be inserted until the PIC line is removed.
In relation to general anaesthetics, the mother says that they are extremely concerning. OL is likely, because of her behaviour, to require a significant number of general anaesthetics. The mother thinks that Dr KD's estimate of 58 general anaesthetics over two years is not realistic due to the need to restrain OL. She points out that in the last two weeks general anaesthetics have been administered on four occasions. The only alternative is physical restraint.
The mother would prefer there to be no treatment for the leukaemia. She would prefer her daughter to receive palliative care and be allowed to die at home. Her wishes are not based on any religious or cultural belief. They are derived completely from her love for her daughter and her desire to avoid further suffering to an already medically challenged child. At the end of the evidence, I asked the mother if she wished to say anything to me about her hopes in respect of the litigation. She reiterated the contents of her affidavit to the effect that she wished her daughter to come home and to have a peaceful end to her life. She was particularly anxious of the pain and suffering that the treatment would require and which she did not think her daughter could endure.
Dr KD stated that amendments could be made to the proposed course of treatment but each modification to make the treatment less intensive would have a corresponding effect on the rate of cure. Extensive modifications "to standard protocols would be considered palliative and could prolong life."
In this regard, Dr KD said:
"OL may possibly gain a few months at home with a lower dose palliative oral therapy. If this course was adopted her family will choose where she will spend the rest of her days, possibly at home, with her loved family members. Symptoms related to this period such as pain or distress can be managed by her paediatrician [Dr N], the local palliative care team or other medical services if the family desire."
Dr KD has had extensive discussions with OL's mother. In these discussions:
"OL's mother informed me that she considers the baseline care required by OL, that is 24-hour care and seizure monitoring, is already extraordinary and that neither OL nor the family can bear any escalation of therapy for any reason. OL's mother also informed me that she could not bear it if OL died as a result of treatment such as an anaesthetic and she was not there to hold her hand and say goodbye."
I accept OL's mother entirely and I have the utmost sympathy for her plight.
Dr KD outlined the "standard potential risks" to OL if the treatment was authorised. These risks include temporary effects such as loss of hair or muscle weakness in the arms and legs and more serious risks such as "death related to leukaemia, toxicities of therapy, infection or a combination thereof." She also recognised that there are always risks associated with anaesthesia.
According to Dr KD the treatment to OL will be more difficult to administer because of her pre-existing conditions, including her behaviour, so that "the burden of the treatment to [OL] and her family may be greater than to another child and family."
In her oral evidence Dr KD maintained her position. She conceded that she had never treated a patient with DEE previously and she recognised that OL presented many challenges.
Dr KD did not accept that the number of general anaesthetics that she envisaged might be understated, although there could be some additional anaesthetics due to unforeseen surgery. On the other hand, she contemplated that over time the need for general anaesthetics might lessen as OL became more accepting of treatment.
Dr KD said that the treatment would not necessarily involve continual admission to the hospital and that OL, and her family, could reside at accommodation annexed to the hospital (Ronald McDonald House) for most of the initial treatment.
Dr KD accepted there were many risks in the treatment, which included permanent damage to OL. Nevertheless, she agreed that her evidence was ultimately to the effect of: "it will be difficult but that doesn't mean you don't try".
Dr ST is a clinical geneticist. Her report, written on 6 March 2024, is attached to the affidavit of the second defendant. She stated that OL "has been identified to have a change ("mutation") written as SCN8A:c.4764C>A;p.(Phe1588Leu) in the SCN8A gene." This mutation is "a severe seizure condition that affects development and learning." Dr ST listed a number of possible consequences of the mutation, some of which OL already had. These included a severe intellectual disability, developmental delay, communication difficulties and an "increased risk of sudden unexpected death in epilepsy." The latter is referred to as SUDEP.
Dr ST, in her oral evidence, said that the fact that other consequences had not yet manifested did not mean they would not do so in the future. These were likely to be physical consequences such as movement disorders which could see OL needing to be in a wheelchair.
In respect of life expectancy, as I understood Dr ST, the combination of DEE and SUDEP resulted in about a 25% reduction in normal life expectancy, but this could be increased by the chemotherapy.
The medium life expectancy for a female in Australia, aged 15, is 71 years (derived from the current Furzer Crestani personal injury assessment handbook, online ed, accessed 18 March 2024). This means that had OL not contracted leukaemia, her life expectancy would be about 53 years. This has some significance because it cannot be said that, but for the leukaemia, OL had a short remaining life span.
Dr AK, a paediatric neurologist, in her report of 7 March 2024 described the dilemma as follows:
"This is a very difficult situation. Treatment for the ALL would be complicated by treatment of her DEE/Epilepsy, in a syndrome (DEE) that does carry a significantly higher risk of early death and SUDEP when compared to the general population. Treatment of the ALL would also be very difficult for [OL] to tolerate. I have spoken to several members of the hospital about [OL] and her family since the diagnosis of ALL, and all have spoken about her families' love and dedication to [OL]. I believe that her families' decisions regarding the best of course of management for [OL] in this situation would be made from their devotion to their daughter."
Dr AK gave oral evidence. She said that she took over treatment of OL from Prof BC in 2020. In her view the treatment regime proposed for OL would be difficult for her to tolerate. It was challenging enough for children without extra medical conditions. She was concerned that OL would not understand the treatment and why it was being done to her.
Dr AK pointed out that chemotherapy was difficult to administer. It was necessary to protect both the patient and staff. This could be exacerbated by OL's non-compliant behaviour. In addition, Dr AK felt that successful treatment could lower OL's life expectancy. For example, a side-effect of chemotherapy could be weakening of the heart. She also thought there could be a greater risk of mortality during the chemotherapy treatment. This could arise from the balance that the epilepsy drugs had achieved, but which could be altered by the chemotherapy drugs.
Prof EN, is a paediatrician who first saw OL when she was 18 months of age. He has managed her treatment since 2014. His report of 13 March 2024 is annexed to the affidavit of the mother. While Drs ST and AK expressed considerable sympathy for the second defendant's case, Prof EN unequivocally supported it. He said in his report:
"I have known OL and her mother since OL first presented with seizures aged 18 weeks. the mother has always acted courageously and strongly advocated in OL's best interests for many years and for of all the time I have known OL and the mother. I agree with the mother's opinion that OL would not manage the painful procedures associated with chemotherapy. Although Leukemia cure rates for this condition are quoted as being above 50% that is under optimum conditions and may include extremely intensive salvage procedures such as bone marrow transplantation. OL would not cope with the pain and consequences of intensive chemotherapy or transplantation.
I therefore support and agree with the mother's decision that it is not in OL's best interests to attempt curative chemotherapy as I have no doubt that she will not tolerate that intrusive intervention. I would be available to address the court specifically if requested to clarify that opinion based on my long connection with OL's family and knowledge about her genetic condition."
In his oral evidence Prof EN pointed out that the leukaemia treatment would have both physical and psychological effects on OL. He said the treatment would be excessively onerous for her. He recommended oral administration of chemotherapy drugs, but this would be essentially on a palliative basis. Dr DK estimated that this course might extend OL's life by 3 or four months.
Prof EN went so far as to envisage a possible need to shackle OL in order to administer treatment. He pointed out that the mother would not always be available to assist. She had other obligations including two other children.
Prof EN said that sedation was not always successful unless it was in the form of a general anaesthetic. He was concerned about the use of too many general anaesthetics.
Prof EN emphasised that while the leukaemia could be treated, the rest of OL's conditions could not. This is obviously correct but to some degree ignores the point that the other conditions are present and would have remained present in any event.
[3]
Deciding the result
The above summary of the evidence has I hope highlighted what every doctor and lawyer said at least once in the course of the case; namely that the decision is difficult.
It is however a decision that must be made promptly. Dr DK is hoping to commence treatment on the 21st of this month.
I suggested to the plaintiff that the declaration sought in the summons should be amended because it did not allow for any change to the treatment program. This led to a fresh declaration being proposed.
A case which is instructive here is Re Ryder [2020] NSWSC 895. At [25] Kunc J set out the relevant legal principles:
"The parens patriae jurisdiction is an extraordinary jurisdiction which, in a case such as this, has only one criterion: what is in the best interests of the child. I respectfully adopt the summary of the jurisdiction set out by Beazley P in X v The Sydney Children's Hospital Network [2013] NSWCA 320; (2013) 85 NSWLR 294:
"2. The jurisdiction invoked in this matter was the parens patriae jurisdiction of the Court. As Basten JA has stated, the origin of the jurisdiction is ancient. In its modern application, it is an "essentially protective" jurisdiction: Secretary, Department of Health & Community Services v JWB & SMB (Marion's Case) [1992] HCA 15; 175 CLR 218 at 280 per Brennan J. In circumstances where the Court's concern is with the welfare of a child, the authorities are clear that whilst the Court's jurisdiction is a broad one, it should act cautiously. This was explained by Fitzgibbon LJ in In re O'Hara [1900] 2 IR 232 at 239-240 in the following way:
"In exercising the jurisdiction to control or to ignore the parental right the court must act cautiously, not as if it were a private person acting with regard to his own child, and acting in opposition to the parent only when judicially satisfied that the welfare of the child requires that the parental right should be suspended or superseded."
3 These remarks have been endorsed by the House of Lords in J v C [1970] AC 668 at 695, 706 and 722 and by Brennan J in Marion's Case at 280."
His Honour then turned to consideration of the case before him at [26]:
"The core concern of the Parents may be summarised in the proposition that they did not want to put Ryder through chemotherapy when it was not apparently necessary at this time. For the following reasons I find on the basis of the Doctor's evidence that it is necessary for Ryder to undergo the proposed treatment as being in his best interests."
In Ryder the child's cancer was in remission and there was "presently no detectable cancer in his body." Notwithstanding this fact his Honour went on to permit the treatment to be undertaken. The very real difference here, and one which emphasises the need for me to agree to the treatment, is that OL is presently suffering from leukaemia and without treatment will have a very short lifespan.
Another difference with Ryder, and one which supports the mother's position, is that the child in Ryder did not have other health issues. As important as this consideration is, it is nevertheless the fact that OL has been living with these other issues for the whole of her life and they have formed part of her life. It is obviously a life that has included ill-health and anguish (including on her mother's part) but nevertheless that is the way she has lived, and, but for the leukaemia, would have continued to live. I note that her life has not been entirely without joy, as shown in the photographs annexed to the second defendant's affidavit. She also attends a special school and apparently enjoys that activity.
It is very important to appreciate that OL, as disabled as she was, was living a life with her family with no suggestion that any action should be taken to interfere with her continuing upbringing. The leukaemia is an illness which is capable of being dealt with, and while successful treatment will bring her back to her previous life, with all its complications, that is a situation that would have existed in any event.
Obviously, the leukaemia treatment is going to be very difficult, in particular for the second defendant and for OL, but that does not mean it should not be undertaken.
I was also referred to the Western Australian case of Minister for Health v AS [2004] WASC 286, in particular this passage by Pullin J, at [21]:
"Where faced with the stark reality that the child will die if life-saving treatment is not performed which has a good prospect of a long-term cure, it is beyond doubt that it is in the child's best interests to receive that treatment."
In my view I have little alternative but to make the orders sought. As onerous as the treatment will be for OL (and her mother) it is treatment that will hopefully return her to her pre-leukaemia condition. OL is not in a vegetative state. Returning to her previous condition will allow her to continue the life that she had already, with all its complications, embarked upon.
Not making the orders is effectively a death sentence. No medical opinion doubted that she would die within about four weeks.
When I raised the possibility of making the orders sought by the plaintiff with the second and third defendants, they asked me to appoint a date about six or nine weeks into the future in order to monitor OL's progress. This timescale was resisted by the plaintiff because it was said that it would not be for at least 12 weeks before any prediction could be made.
I was initially reluctant to make any orders that would not immediately finalise the summons. I was however informed that it is not unusual in cases of this type for the matter to return to court. I was referred to the decision of Meek J in H v AC [2024] NSWSC 40 at [48]-[49]:
"What is involved in the exercise of the Court's parens patriae role will depend upon the precise nature of the presenting issue. In particular, it may be that the parens patriae jurisdiction is invoked simpliciter (as in this case), or in the context of a statutory framework in which a matter falls to be determined, or that particular statutory relief is sought alternatively to parens patriae relief.
Nonetheless, there is a broad evaluative or discretionary content in most decisions made on an exercise of protective jurisdiction: see P v NSW Trustee and Guardian [2015] NSWSC 579 (P v NSW Trustee and Guardian) at [191] per Lindsay J. Further, many decisions are, practically speaking, 'interlocutory' in character in the sense that they may be subject to review or further consideration as the exigencies of the case may require. This is unsurprising given the nature of the jurisdiction and its focus upon the welfare and best interests of the person, which is time- and circumstance-dependent and is inherently susceptible to change as life has no promise of absolute certainty."
I have accordingly decided to make the declaration sought but also to give the parties a mention date in about 12 weeks and a general liberty to restore.
[4]
Orders
1. The court declares, until further order, that the staff, employed or contracted to H may lawfully provide the medical, nursing, and other supportive treatment to OL in treatment of her acute lymphoblastic leukaemia.
2. The court notes that the hospital staff will engage with OL's parents to ensure they are consulted throughout the treatment.
3. The matter is listed for mention on 14 June 2024.
4. All parties have liberty to restore on 48 hours' notice to the other parties and to the court.
[5]
Amendments
19 March 2024 - First names anonymised in para 33
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Decision last updated: 19 March 2024