Best Interests of the Child in the Treatment of Cancer

Nicola Ashford | Lawyer | Kim Wilson & Co Family Lawyers

Director Clinical Services, Child & Adolescent Health Services and Kiszko & Anor [2016] FCWA 19

The Child & Adolescent Health Services branch of the WA Department of Health commenced proceedings in the Family Court of Western Australia seeking urgent orders for a six year old boy to commence curative treatment for his rare cancer. The Respondents in the case were the parents of the child, who did not consent to the treatment.

First case of its kind before the Family Court of Western Australia and was heard on two separate occasions by Chief Justice Stephen Thackray.

First decision

Oshin was diagnosed with a rare brain tumour in late 2015 and shortly thereafter underwent surgery to remove the tumour.

The doctors at Princess Margaret Hospital (PMH) wanted to start Oshin on a treatment of radiotherapy and chemotherapy following the surgery.

Oshin experienced serious side effects from the surgery. His parents did not consent to further treatment and wanted to explore alternative therapies, including a focus on nutrition. They had grave concerns for Oshin’s suffering through treatment given his experiences following surgery.

The matter went to two Ethics Committee hearings at PMH. It then became apparent that Oshin’s parents were actively rejecting conventional therapy in preference to alternative therapies.

There was evidence before the Court that Oshin had a good prospect of a long term cure, namely a 50-60% prospect at being alive in 5 years, if he underwent the curative treatment as recommended.

In the first decision on 24 March 2016, the Court held that when faced with the reality that Oshin would die without the treatment proposed, which had a good prospect of a long term cure, it is beyond doubt that it is in his best interests to receive the treatment.

There was also uncontested medical evidence that when faced with the same decision, the great majority of parents would opt for the treatment proposed.

The Court found it was in Oshin’s best interests to commence the proposed chemotherapy treatment as soon as possible.

The Parents were given the opportunity to bring the matter back before the Court and to produce expert evidence to persuade the Court that the proposed therapy, and in particular the radiotherapy, was not in Oshin’s best interests.

Second decision

Since the first decision was handed down, Oshin had undergone two courses of chemotherapy. The evidence from his doctors at PMH was that the results of the chemotherapy were “pleasing” but that chemotherapy alone will not be sufficient to save Oshin’s life.

Dr G, the head of the department at PMH gave evidence that a treatment of further chemotherapy together with a high-level dose of radiotherapy was required to cure the cancer. In Dr G’s opinion, Oshin’s chance of survival had reduced to a 30-40% prospect at being alive in 5 years if that treatment were undertaken.

Oshin’s parents continued to resist curative treatment up to the day of the second hearing. During Oshin’s chemotherapy treatment, they had actively protested against it and had erected a “Forced Chemo” sign above his bed.

At the first hearing His Honour appointed an Independent Children’s Lawyer (“ICL”), which was funded by Legal Aid WA. The ICL sought an expert witness report as to Oshin’s treatment options from Professor Stewart Kellie, a highly qualified and respected expert in the field of paediatric oncology.

Kellie’s first report

Professor Kellie produced two reports, the first during Oshin’s treatment, and the second after MRI scan results were made available following two rounds of chemotherapy.

The Court noted Oshin’s cancer was classified as “high risk” and “Group 4”. The Court had evidence that this classification signified a very high probability of death from tumour progression or reoccurrence despite treatment. Oshin’s doctors recommended a far higher dose of radiation be administered to Oshin in order to treat the high risk cancer. The proposed dose was substantially higher than that usually administered to children with “average risk” cancer of that kind.

The Court then summarised large portions of Professor Kellie’s report which included that there was no internationally agreed age for the use of radiation therapy to treat young children with Oshin’s form of cancer, that survival outcomes of patients treated without radiation therapy were generally inferior and if Oshin were treated with chemotherapy only, he had a 30% or less chance at long-term survival.

His Honour found that Professor Kellie’s remarks in his report closely aligned with the findings of the doctors at PMH. Professor Kellie’s opinion was that Oshin’s parents’ suggestion that Oshin to be treated only with palliative care was “unreasonable”.

Professor Kellie’s report discussed a recent study of survivors of paediatric brain tumours treated with craniospinal radiation (as was proposed for Oshin), the study found (as extracted in the judgment) [at 24]:

the relative risk of severe neurocognitive impairment among survivors previously treated with craniospinal radiation compared to other long-term survivors of paediatric brain tumours treated without radiation show significant neurocognitive impairment in the domains of intelligence, academic achievement, attention… memory, processing speed, and executive functioning.

Given the substantial impairment experienced by young patients treated with radiation, in cases such as Oshin’s, Professor Kellie’s practice was to provide parents with two options – either the combination of radiotherapy and chemotherapy with the higher survival rate, or the chemotherapy only option with the lower survival rate but with a much lower risk of long-term impairment.

In his experience he had found that parents making the treatment choice fell into two categories, those that “prioritise survival at any cost over quality of survival and those who prioritised quality of survival over survival at any cost”.

Professor Kellie had commented that he would respect a parent’s decision to opt for chemotherapy only in a patient aged between 3 and 6 years at diagnosis. Oshin was only 5 years old when he was diagnosed.

At the end of his first report, Professor Kellie recommended that the next decision as to Oshin’s treatment be made following an MRI which would reflect the response to chemotherapy. Professor Kellie found that if there was a complete or near complete clearance of the tumour that he would recommend the current treatment continue.

In the event there was a “lesser degree of response” he would recommend discussing palliative options.

Kellie’s second report

In his second report Professor Kellie found there had been “an unequivocal radiologic response” to the chemotherapy but not a “complete” response.

Professor Kellie found that in a case of a child of 5 or 6 years there is a range of treatment options available which would be based on parental willingness.

In Oshin’s case Professor Kellie considered the “strong parental opposition to radiation therapy” and stated his recommendation for two further courses of chemotherapy. In the event a “complete radiologic response” was achieved through chemotherapy he would discuss the use of radiation therapy with the parents “but would be prepared to accept the chemotherapy only approach”.

On contemplating Oshin’s latest results, Professor Kellie found Oshin’s probability of being a long term survivor was less than the original estimate of 40-50%. He concluded by stating that he would not coerce the high dose of radiation recommended by Oshin’s doctors “because on the balance of probabilities, it is less than likely to save Oshin’s life but is virtually guaranteed to be associated with iatrogenic long term severe adverse health outcomes”.

PMH

The Court also heard further evidence from PMH through Dr G.

Dr G accepted the “horrific long-term side effects” of radiotherapy which could not be predicted in any patient. However, Dr G supported a protocol called Head Start which recommended in children up to 6, chemotherapy be administered only. Then beyond the age of six, treatment of chemotherapy together with reduced dose radiation. However, in the event of a ‘not complete’ response to chemotherapy, then Head Start would still recommend radiation.

The Court also heard evidence from Dr G as to Oshin’s likely death in the absence of further treatment. He stated that if Oshin were given only palliative treatment, he would most likely pass away within 6-12 months.

Oshin’s parents

Oshin’s mother and father gave evidence as to his experience of the treatment so far.

In particular, Oshin’s mother described Oshin as being “frightened” and “traumatised”.

Oshin’s parents changed their position at the second hearing, namely, following the publication of Professor Kellie’s report, they no longer sought palliative treatment only and proposed to continue with the chemotherapy-only treatment.

Conclusion

In reaching his decision, His Honour expressed that at the “heart of this case” was the consideration and value attributed to the “maintenance of life” and “quality of life”. A consideration made more “acute and agonising” as it is in relation to a child’s life.

His Honour again stated the matter turned on an exercise of the Court’s discretion bearing in mind what Oshin’s best interests are as the paramount consideration.

His Honour considered that there were “two social, moral or ethical questions involved.” :

The first is whether greater emphasis should be placed on life itself or on the quality of life. The second question is whether the first question should be answered by me as a representative of the state or by the parents, who in every other respect are permitted to make decisions on behalf of their child who is too young to make decisions for himself.

His decision, His Honour noted was to be “informed by an independent and dispassionate view of all of the circumstances” and not informed by what he would decide if faced with the same choice.

Counsel for PMH were unable to point the Court to any other case where a medical intervention had been imposed where there was “reputable, independent expert” evidence that the parent’s position was justifiable based on an assessment of the “relative benefits and burdens of the proposed treatment”.

His Honour noted that there was an absence of consensus in the medical opinion of Professor Kellie and Dr G as to whether radiotherapy was the best treatment for Oshin and that :

In the absence of a consensus of qualified medical opinion, there is, in my view, no role for the state in directing the parents to act in accordance with one entirely valid opinion in preference to another.

His Honour placed weight on several factors including that in Professor Kellie’s experience a “substantial minority” of parents would elect chemotherapy-only, that Oshin’s chance at long-term survival had not reduced, and Oshin’s adverse reaction to the treatment so far.

His Honour also considered Oshin’s parents’ “passionate and highly public objection” to radiotherapy. There was cause to doubt their ability to control their emotions. He noted:

If Oshin were to have “forced” radiotherapy, I fear he would again be exposed to his parents’ hostility and bitterness, potentially causing him even more psychological trauma.

In the face of Professor Kellie’s report, Oshin’s parents agreed to continue on the course recommended by him namely, chemotherapy only treatment. PMH advised the Court they were willing to work with the parents through that treatment.

His Honour did not dismiss PMH’s application but adjourned it to provide the option to bring the matter back before the Court in the event any other intervention is required in Oshin’s best interests.

In the meantime, His Honour discharged the earlier Orders requiring Oshin’s chemotherapy treatment, as that treatment plan was agreed. Click here for full judgment