Re Ryder

Ryder (a pseudonym), the first defendant, is a two years and eight month old boy who has already endured much in his short life. However, unlike many of the children who come to the Court’s attention, he has the unwavering love and support of his parents, the second and third defendants (the “Parents”). He has also had the benefit of highly skilled medical care.

Nevertheless, for reasons which the Court respects, Ryder’s parents do not wish to consent to the next step in his treatment - six cycles of chemotherapy (the “proposed treatment”) - which are unanimously recommended by his treating doctor (the “Doctor”), supported by collegial consultation among other specialists in the field including from overseas, and by a formal second opinion.

The plaintiffs - the Minister for Health and the treating hospital network (the “Hospital”) - have urgently invoked the parens patriae jurisdiction of this Court for orders which will permit the proposed treatment to be administered over the Parents’ objection. For the reasons which follow, the Court will make those orders. In short, the Court is satisfied that it is in Ryder’s best interests that he undergo a course of chemotherapy now, with its attendant discomfort and side effects but very good prospects of success, to avoid a significant prospect of contracting cancer and having to undergo far more toxic chemotherapy later with far lower prospects of a successful outcome.

Mr M Anderson of Counsel appeared for the plaintiffs. The Parents appeared for themselves and had support available from Mr D Kennard of the Legal Aid Early Intervention Unit.

It is necessary to begin with two important preliminary points. First, it must be recorded that the Parents are grateful for, and have acknowledged the excellence of, the care which Ryder has received. They have participated fully in all of his medical consultations and carefully listened to the advice they have been given. They are not to be criticised for the approach which they have taken to their present dilemma.

Second, as will become apparent, the reasons that the Parents do not wish to consent are rational and motivated by their concern for Ryder’s quality of life. They do not object to chemotherapy in and of itself. However, to put it shortly, they do not want to put Ryder through more chemotherapy when there is presently no detectable cancer in his body.

A convenient summary of Ryder’s medical history is set out in a letter dated 28 May 2020 from the Hospital to the Parents, which I gratefully adopt with necessary redactions (emphasis added):

Pausing there, it is important to note that the present issue is not a question of preventing a tumour developing in Ryder’s remaining eye. The evidence in relation to the treatment of Ryder’s retinoblastoma, insofar as his remaining eye is concerned, was given by the Doctor on the last occasion:

The present issue is concerned with minimising the prospect of any microscopic cancer cells, which may have escaped from Ryder’s enucleated eye, becoming florid cancers in other parts of his body. The Doctor referred to this in his evidence as “distant (systemic) disease recurrence”.

The Parents declined to give their consent in the face of the Doctor’s strong recommendation that Ryder should undergo further chemotherapy. A second opinion was obtained, as well as an opinion sought by discussion among a specialist interest group of oncologists. All recommended without hesitation that Ryder should urgently undergo the proposed treatment.

The matter came before me last Friday in the Duty List. What became apparent was that before Ryder could undergo the proposed treatment, if it were permitted by the Court, it would be necessary for him to undergo a PET-scan and an MRI as preliminaries to that treatment. During the course of the hearing last Friday, the parties agreed to my suggestion that he should have those tests. This was done on the basis that if, in the unhappy event those tests demonstrated that there was detectable cancer in other parts of Ryder’s body, there was no question that the Parents would do anything other than consent to the proposed treatment or any other treatment that might be recommended by his doctors in the face of that new diagnosis. However, if those examinations did not disclose any detectable cancer, then the matter would have to return to Court for determination.

Since the last hearing, Ryder has undergone a PET-scan and an MRI. Much to the relief of all concerned, fortunately neither of those tests detected any cancer in his body. This means that the Court has now had to determine whether orders should be made which would permit the Hospital to administer the proposed treatment to Ryder in the face of his parents not being prepared to consent to that treatment.

The Doctor’s latest opinion is conveniently summarised in his most recent affidavit:

The Doctor’s opinion was more fully explained in a supporting report, which included:

The Court has been assisted by submissions carefully prepared by the Mother and by an extensive exchange during today’s hearing between the Court, the Parents and the Doctor (who I found to be a considered and impressive witness), in which questions were asked and explanations sought in relation to the matters which the Mother had raised in her submissions.

I will next set out the Parents’ concerns and the Court’s findings.

First, there was a concern about the effect of the proposed treatment on Ryder’s long term growth and development. The Court accepts the Doctor’s opinion that there is no appreciable adverse risk to Ryder in that regard.

Second, the Parents were concerned that the history of Ryder’s treatment - in particular, the course of chemotherapy he underwent which, nevertheless, did not avoid the enucleation of his left eye - demonstrated that he had somehow become resistant to chemotherapy. Their concern was that such resistance would render the suffering that he would undergo in the proposed treatment futile.

The Court accepts the Doctor's evidence that what occurred in relation to the course of treatment of Ryder's left eye is not indicative of any resistance to chemotherapy that might inhibit the effectiveness of the proposed treatment.

Third, as a result of research undertaken by the Parents, they expressed their concern about the appropriateness of the drugs that it was intended to be used in the proposed treatment. The Parents tendered into evidence the approvals for those drugs by the Therapeutic Goods Administration (“TGA”). They submitted that it was not apparent from those approvals that the relevant cancer drugs were suitable for use on children. To use them on children was, they submitted, an “off label” use.

Again, I accept the Doctor's evidence that because children are not used in the testing of such drugs, the TGA approvals do not, in terms, deal with the suitability of those drugs for the treatment of cancers in children. Nevertheless, the Doctor, who is highly experienced over many years in dealing with cancers of this kind, gave evidence, which the Court accepts, that, in his experience, these drugs are suitable for the treatment of children such as Ryder and have resulted in good outcomes for many of his patients. In those circumstances, the Court is satisfied that there is no proper basis for concern about the suitability of the drugs proposed to be administered to Ryder.

Finally, and perhaps most importantly, the Parents’ fundamental objection to the proposed treatment was their clear and understandable unwillingness to put Ryder through chemotherapy again when, at the moment, he has no cancer presently detectable in his body. They had no objection to him undergoing regular scans for detectable cancers.

The Parents’ concerns were eloquently expressed in the Parents’ written submissions prepared by the Mother:

I asked the Doctor to respond to the point raised by the Parents about the severity of the side effects Ryder might experience if he underwent the proposed treatment. I accept the Doctor's evidence that what Ryder did go through as described by the Mother was within the range of possible side effects for such treatment and was not to be considered unusual or out of the ordinary. However, I also accept the Doctor's evidence that there are good prospects that Ryder will suffer less (but not be free from) from such side effects during the proposed treatment because he is now a little older and bigger and will, therefore, be better able to tolerate the unavoidable toxicity of the proposed treatment.

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:

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.

As I explained to the Parents, when exercising this jurisdiction the Court is not a substitute parent. The position of the Parents as parents in relation to the proposed treatment is entirely understandable. No parent wishes their child to suffer, even when the suffering is necessary, and especially when they are not satisfied that it is necessary. However, the role of the Court in exercising the parens patriae jurisdiction is to consider the evidence objectively and to apply only the test that I have referred to above, being what is in the best interests of the child.

While the Court feels deep sympathy and understanding for the emotional turmoil of the Parents, when faced with circumstances such as the present, the Court’s jurisdiction is not exercised by reference to the emotional wellbeing of the Parents, other than to the extent that wellbeing may have an impact upon the child. In this case, although what may come will be difficult and upsetting for the Parents, I have no doubt on the basis of how they have conducted themselves in these proceedings that they will see it through with the same fortitude and care for Ryder that they did during his earlier chemotherapy.

On the evidence, the issue is straightforward. If Ryder undergoes the proposed treatment, then there is, the Court accepts, only a 10 per cent prospect of a distant recurrence of Ryder's cancer, that is to say a recurrence of the cancer in some other part of his body as a result of the travel of microscopic cancer cells from his left eye prior to its enucleation. The proposed treatment will be uncomfortable and will have side effects. However, I have also taken into account that it is likely, and much to be hoped, that his capacity to tolerate the proposed treatment will be better than it was during his earlier treatment.

On the other hand, if Ryder does not undergo the proposed treatment, there is a 40 per cent prospect of a distant recurrence of his cancer. It is not then simply a question of him suffering from a cancer. In that eventuality, any treatment will be longer and more toxic than the proposed treatment, including, depending on the site of the cancer, carrying significant risks to his long term health and development. To this must be added that, obviously enough, the treatment of a cancer has a lower chance of a successful outcome than dealing with microscopic cancer cells that have not yet developed into an active tumour.

It is not to trivialise, and I intend no disrespect, to say that in this case the choice is between some very real pain in the short term – which, I hasten to add, I do not in any way underestimate - to avoid the real and not insignificant prospect of something far worse in the long term. The Court will order that the proposed treatment be permitted because it is well satisfied that it is in Ryder's best interests to have that treatment now and minimise the significant risk of a far more intrusive treatment later with considerably less prospects of success.

However, I wish to emphasise that the conclusion to which the Court has come has not been reached lightly. I have firmly borne in mind that the Court must be cautious about any intrusion on the autonomy of parents to make decisions about their child. Nor has it been reached by the uncritical acceptance of expert opinions of statistically likely outcomes, persuasive as those opinions may be. I am fortified in the conclusion which I have reached because it is also obvious to the Court that Ryder will undergo the proposed treatment with the unfailing love and support of the Parents, and in the care of clinicians whose undoubted technical competence is matched by their compassionate concern to ensure the best outcome and quality of life for Ryder.