Dee v A District Health Board

[2019] NZHC 834

NOTE: ORDER PERMANENTLY SUPPRESSING THE NAME AND ANY DETAIL IDENTIFYING JOHN, OR HIS FAMILY MEMBERS, AND JOHN’S RESPONSIBLE CLINICIANS:

SEE CARE OF CHILDREN ACT 2004, S 139; FAMILY COURTS ACT 1980, SS 11B, 11C AND 11D; HIGH COURT RULES, RR 3.12, 3.13, 7.19. THESE ORDERS ARE TO EXTEND BEYOND THE MAIN MEDIA TO ANY

TECHNICAL, PROFESSIONAL OR STATISTICAL PUBLICATION. ACCESS TO THE COURT FILE IS PROHIBITED WITHOUT THE LEAVE OF A HIGH COURT JUDGE AND WILL NOT BE GRANTED WITHOUT THE PARTIES BEING HEARD.

IN THE HIGH COURT OF NEW ZEALAND AUCKLAND REGISTRY

I TE KŌTI MATUA O AOTEAROA TĀMAKI MAKAURAU ROHE

CIV-2015-404-000074

[2019] NZHC 834

IN THE MATTER OF

an application under section 31 of the

Care of Children Act 2004 to place a child in the guardianship of the Court

AND

IN THE MATTER OF

JOHN DEE

BETWEEN

A DISTRICT HEALTH BOARD

Applicant

AND

JAMES DEE

Respondent

Hearing:	21 March 2019
Counsel:	P W Le Cren for the Applicant M K Macnab for the Respondent S R Jefferson QC for the Child
Judgment:	16 April 2019

JUDGMENT OF EDWARDS J

This judgment was delivered by me on 16 April 2019 at 2.15 pm pursuant to r 11.5 of the High Court Rules.

Registrar/Deputy Registrar

A v DEE [2019] NZHC 834 [16 April 2019]

[1]                 John Dee is a young man who is nearly 14 years of age.1 He lives with his father, James, his stepmother and siblings.

[2]                 On 27 February 2015, John was placed under the guardianship of this Court.2 That order was made on the application of the District Health Board to facilitate the treatment of HIV – a condition that John was diagnosed with when he was only four months old. The guardianship orders were continued, without opposition, following  a review in 2017.3

[3]                 John was not aware of his diagnosis at the time the guardianship orders were made and reviewed, and consequently his views were not ascertained at the time. But last year John’s clinicians deemed it appropriate to disclose his condition to him and Mr Jefferson QC, counsel for the child, subsequently met John and obtained his views. Those views are set out at [16] to [22] of this judgment.

[4]                 This judgment follows a hearing to review the guardianship orders in light of John’s views. Although James and John have expressed reservations about the ongoing treatment, there is no opposition to the continuation of the guardianship orders at this stage. The review proceeds on that basis.

Current status

John’s health

[5]                 John started antiretroviral treatment in January 2015. His clinicians report that he is medically well. His viral load is down, and his CD 4 levels (an indicator of immunity) are up. He has had no hospitalisations for serious illness, nor any prolonged school absences since the last review hearing in 2017.

[6]                 There have been some side effects of the medication. For example, John suffered from jaundice for a period of time which is a known side effect of one

1      This name is fictitious, as is the name James Dee given to his father.

2      ADHB v Dee [2015] NZHC 304.

3      A v Dee [2017] NZHC 1049.

particular  medication  he  takes.     Following discussions with John’s father, the medication was changed, and John’s bilirubin levels have returned to normal.

[7]                 John has also experienced other minor medical issues which may, or may not, be due to his illness or treatment. For example, towards the end of 2018 he complained about intermittent knee pain, but that appears to have subsided over the summer holidays. He has also been referred to a dermatologist to receive treatment for a skin condition. James says that he noticed changes in John’s behaviour, which he attributes to the medication, but that is disputed by the clinicians.

[8]                 John has said that the daily attendance of nurses to administer the medication is annoying, particularly on the weekends when he would rather sleep in. To accommodate this, the clinicians are planning to trial a new way of monitoring whether John is taking his medication without a healthcare worker having to be physically present.

[9]                 Insofar as the treatment of HIV is concerned, the clinicians report that there have been no changes in international guidance and no relevant changes in paediatric HIV management. The treatment that John is receiving is in accordance with best practice. The weight of the medical evidence suggests that if John stops taking his medication now, it would trigger a change in his ability to combat the disease which would leave him immune-compromised. The clear recommendation is to continue the treatment for the foreseeable future.

James’ views

[10]            At the time the original guardianship orders were made, James did not accept John’s diagnosis of HIV, and disputed that it lead to AIDS. Keane J recorded that James held the pharmaceutical industry accountable for promoting HIV to sell its products and for exposing those for whom those products were prescribed to AIDS.4

[11]            To some extent, these same views were apparent in the material James put forward to the Court for the purposes of the current review. That included his research

4 At [2].

into the prevalence of misdiagnoses of the HIV condition, and the potential long-term negative side effects of continuing with HIV medications.

[12]            However, in other respects, James’ views appear to have softened. James says there is a need to challenge the conventional wisdom about AIDS and he fears for his son’s health if he has to remain on these drugs for the next 10 years. He advocates researching the condition and challenging the diagnosis to ensure that John is not pushed into a treatment that he is not comfortable with or that might hurt him.

[13]            This shift is apparent in the approach James has adopted since the orders were made. James has co-operated with the treatment of John’s condition. He has taken him to clinic appointments and allowed nurses to attend to John at home. There appears to be a relationship of trust between James and John’s clinicians as evidenced in the consultation concerning the process by which disclosure of his condition should be made to John.

[14]            Counsel for James, Ms McNab, confirms this shift in position. She characterises it as a significant shift from that adopted in 2015 when James did not want treatment to occur. Now, James’ position is that he supports John’s views and the decisions he makes. James appreciates the opportunity to put his views before the Court but does not have any desire to interfere with the treatment regime. James does not oppose the continuation of the guardianship orders.

[15]            I pause here to recognise the importance of that position. The collaboration between James and John’s clinicians, despite their opposing views, has shielded John from the conflict and distress evident in analogous cases overseas.5 The maintenance of a cooperative relationship between all the parties is integral to the protection of John’s best interests and welfare and it is a credit to all those involved that this has been achieved in the circumstances.

5      See for example, NHS Trust v Mr and Mrs A [2014] EWHC 1135 (Fam).

John’s views

[16]            Mr Jefferson QC was appointed counsel for the child in December 2016. He was appointed to report to the Court on the question of disclosure to John of his HIV status; how John’s views on matters before the Court could be ascertained; and whether and how counsel should communicate with John. A clinical psychologist was engaged to assist Mr Jefferson with reporting to the Court on these questions. Because John was unaware of his diagnosis, and these Court proceedings, Mr Jefferson was directed not to confer directly with John pending further orders of the Court.

[17]            Disclosure of John’s condition was made on 19 July 2018, during the school holidays. John, James, one of John’s clinicians and a nurse were present at the meeting. The clinician’s report records that John asked many questions about his diagnosis. He sought evidence that he did in fact have the virus and asked about the side effects of the medication he was taking. John expressed frustration at having to take pills each day, and annoyance at the nurse’s daily visits. There was discussion about the risk of HIV progressing to AIDS, the need to take medication for the rest of John’s life, and how John had contracted the virus. The meeting lasted for approximately one hour.

[18]            Following disclosure, and after  consulting  with  James  and  his  counsel,  Mr Jefferson met with John on 16 August 2018 at his home. James was present for most of the one-hour meeting. During that meeting, John expressed a desire for a follow-up appointment with  the  clinician.  That  occurred  on  18  October  2018. Mr Jefferson then met with John again on 18 December 2018.

[19]            Mr Jefferson reports that John acknowledges the present position but takes the view that he is not able to change it. John reported few (if any) ill effects of his HIV but asserted some side effects from taking the medication. He also expressed frustration at the social inconvenience of having to take the medication.

[20]            As reported by Mr Jefferson, John was “adamant” that if he was able to exercise a choice, he would stop the treatment he is receiving.  (I note,  however,   Mr Le Cren’s submission that John has not expressed his views in such unequivocal

terms to the clinicians. Indeed, in a very recent clinic visit, John is reported as stating that he was “ok” with how things are).

[21]            Mr Jefferson reports that John did not appear to relate the need for treatment to any concept that a failure to treat might have dire consequences for him, and he was unable to draw John into expressing a view on that possibility. John was aware of his father’s opinions, but, to Mr Jefferson at least, John appeared to “detach himself from his father’s representations” in an effort to maintain an independent view.

[22]            Finally, John expressed a clear wish not to have any further “follow up” consultations with the clinical team to discuss his diagnosis and treatment. He told Mr Jefferson that he understands what he is being told and does not consider he needs any further information at this time.

The obligations under s 6 of the Care of Children Act 2004

[23]            The review of the guardianship orders in light of John’s views draws into question the scope of the obligations under s 6 of the Care of Children Act 2004 (COCA). That section provides:

6        Child's views

(1)This subsection applies to proceedings involving—

(a)the guardianship of, or the role of providing day-to- day care for, or contact with, a child; or

(b)the administration of property belonging to, or held in trust for, a child; or

(c)the application of the income of property of that kind.

(2)In proceedings to which subsection (1) applies,—

(a)a child must be given reasonable opportunities to express views on matters affecting the child; and

(b)any views the child expresses (either directly or through a representative) must be taken into account.

[24]            Section 6 gives effect to the obligations in the United Nations Convention on the Rights of the Child ratified by New Zealand in 1993.  As Randerson J noted in   C v S, the Convention proceeds on the assumption that everyone is entitled to be

treated with dignity and respect, and that “… whenever capable of forming a view, a child has the right freely to express it.”6

[25]            In C v S, Randerson J went on to consider the key features of s 6 of COCA. Those features particularly relevant to this case may be summarised as follows:

(1)The obligation in s 6(2)(a) to give reasonable opportunities to a child to express views was mandatory, but the child is not bound to express views if he or she does not wish to do so.

(2)The obligation is to provide reasonable “opportunities” which means it might be necessary to provide more than one opportunity for the child to express views.

(3)The “views” of a child are wider than the child’s wishes.

(4)Section 6 does not stipulate how opportunities are to be provided for the child’s views to be expressed.

(5)Where a child expresses views, they may be conveyed to the Court either directly or through a representative. Any views expressed must be taken into account.

(6)The expression “taken into account” is stronger than “have regard to” but it does not oblige the Court to act in accordance with the views of the child. That would run counter to the Court’s wider obligation to assess what is in the child’s welfare and best interests.

(7)The Act is silent on the weight to be given to the child’s views. It is implicit that the Court retains a discretion to give such weight to the child’s view as it considers appropriate in the circumstances of the case. The age and maturity of the child will be relevant, as will any other circumstance affecting the child.

6      C v S [2006] 3 NZLR 420 (HC) at [27].

[26]            Mr Jefferson submits that there was probably a flaw in the original process given John’s views were not ascertained at the time the original orders were made. For that reason, he submits that the question of guardianship should be considered afresh.

[27]            I respectfully disagree. Applying the above principles to John’s case, I am satisfied that there has been compliance with the s 6 obligations. This is not a case where there has been no consultation at all. John’s views have been ascertained. The only issue is whether those views should have been obtained at the outset, rather than some years down the track.

[28]            To ascertain John’s views at the outset would have required disclosure of his condition to him at the time. But, as recorded in Keane J’s original judgment, all parties regarded John as too young to understand the diagnosis back then.7 Further, when the guardianship orders were reviewed in March 2017, John still had not been told of his diagnosis. Counsel for the child and the clinical team did not consider John to be at a stage where disclosure should be made. As recorded in my judgment, the disclosure process formed part of the treatment of the condition and it was critical that it was handled carefully and sensitively in order to sustain and maintain the therapeutic relationship between the clinicians and John.8 The clinicians, in consultation with James and counsel for the child, designed a process which ensured disclosure occurred at a time and place that did not compromise his ongoing treatment. All parties agreed that before last year John was not at an age and stage where disclosure should be made.

[29]            As confirmed in C v S, the process of obtaining views must be tailored to the interests of the particular child and must be undertaken in light of the paramountcy of the best interests and welfare of the child.9 In this case, John’s best interests and welfare shaped the first “reasonable” opportunity to express those views. That opportunity only presented itself last year after disclosure had been made. Accordingly, I do not consider that the delay in obtaining John’s views amounted to a breach of s 6, and there was no flaw in the process.

7      ADHB v Dee [2015] NZHC 304 at [8].

8      A v Dee [2017] NZHC 1049 at [11].

9      C v S [2006] 3 NZLR 420 (HC) at [31].

[30]It follows that there are no grounds to consider the guardianship orders afresh

– at least not in the sense of starting from scratch. In any respect, the parties did not prepare nor present their respective cases on that basis. And, as already noted, there was no opposition to continuation of the guardianship orders at this stage.

John’s competence and capacity to make decisions about medical treatment

[31]            John’s capacity to make decisions about medical treatment is an issue that has come to the fore now that John’s views have been obtained.

[32]            Section 11 of the New Zealand Bill of Rights Act 1990 (NZBORA) states that “everyone has the right to refuse to undergo any medical treatment”. The exercise of that right by an adolescent raises issues about their competence to make such a decision.

[33]            The position is clear for minors over 16 years of age. Section 36(1) of COCA provides that children aged 16 years and over may consent to treatment and may refuse to consent to any medical treatment or procedure. But the section is less clear for children, and in particular adolescents, under 16 years of age. Section 36(3)(a) provides that if the consent of any other person to any medical procedure to be carried out on a child is necessary or sufficient, consent may be given by a guardian of the child.

[34]            That does not mean that a child under 16 years of age may not be competent to make decisions about whether to consent to or refuse medical treatment. In Gillick v West Norfolk and Wisbech Area Health Authority, the House of Lords considered that the validity of a decision regarding medical treatment was a consequence of personal maturity and understanding, not biological age (referred to as “Gillick competence”).10

[35]            The status of Gillick in New Zealand is uncertain because s 13 of the Care of Children Act 2004 provides that the Act is a code. Nevertheless, the principles in Gillick were applied in Hawthorne v Cox in the context of a case concerning guardianship.11    Heath J held that the younger the child, the more likely it is that

10     Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402 (HL).

11     Hawthorne v Cox [2008] 1 NZLR 409 (HC).

decisions about important matters will be made by his or her guardian. However, as the child gets older and becomes more mature, the guardianship role changes to that of an adviser or a counsellor, endeavouring to assist the child to make good decisions. Although the right under s 11 of NZBORA was not engaged in that case, these principles are likely to provide guidance in assessing the competence and capacity of an adolescent to refuse medical treatment.

[36]            The nature of the medical treatment, and the risk of significant harm if treatment is refused, are highly relevant factors in the overall assessment of competence. The case of Gillick concerned contraception for underage girls without parental consent, and so was not a case involving the refusal of potentially life-saving treatment. The English courts, in particular, have demonstrated a willingness to override the wishes of an adolescent to refuse treatment where it is in the best interests and welfare of the adolescent to do so.12

[37]            The question of Gillick competence has not been raised in this proceeding. It was not at issue when the guardianship orders were first made, nor when they were reviewed in 2017 because John did not know of his diagnosis at that stage, nor the reason for his underlying treatment. Keane J recorded that it was accepted that John’s interests would be adequately protected and promoted at the hearing by James and by John’s responsible clinicians.13 By the time of the review in 2017 those interests were further protected by the appointment of counsel for the child – and there was no opposition to the continuation of the orders at that stage.

[38]            Even now, after John’s views have been obtained, the question of John’s competence to refuse medical treatment is not squarely before the Court. All parties have proceeded on the assumption that, while John’s views are very important, the paramount consideration remains what is in his best interests and welfare, and that it is the Court as guardian that ultimately determines whether treatment should continue. Consequently, there is no evidence before the Court directed towards John’s maturity and understanding, and other competence-related issues.

12     See for example NHS Trust v Mr and Mrs A [2014] EWHC 1135 (Fam); Re R (Wardship: Consent to Treatment) [1992] Fam 11 (CA).

13     ADHB v Dee [2015] NZHC 304 at [8].

[39]            Although Gillick competence is not squarely before the Court at this stage, it may become an issue later – particularly if John decides not to continue treatment after the orders expire on his sixteenth birthday. John will be deemed competent under s 36 of COCA to make decisions regarding medical treatment for himself at that time. There is a possibility that the District Health Board will apply to extend the guardianship orders if John signals an intention to cease treatment then.

[40]            Whether the Court has jurisdiction to grant an extension, and if so, whether the orders should in fact be extended, are issues for another day. However, I agree with Mr Jefferson that addressing these issues will require some time and they will need to be resolved prior to the expiry of the orders on John’s sixteenth birthday. I intend to direct a conference to be convened towards the end of 2020 to address the possibility of an extension, and the steps and evidence required to prepare for that hearing. Leave to seek an urgent directions conference prior to that time will also be reserved to ensure there is an ability to come back before the Court should circumstances change.

How should John’s views be taken into account?

[41]            Although issues of competence and capacity are not before the Court, John’s views must nevertheless be taken into account in deciding whether to continue the guardianship orders. The question for the Court is what weight should be accorded to those views in the circumstances.

[42]            There is no doubt that John’s views about treatment are incredibly important. He is a young adolescent, just a few years short of the statutory age at which he is deemed able to make decisions around treatment for himself. It is John who carries the virus, and John who is experiencing the physical, emotional and social consequences of treatment. John may be reassured that his counsel faithfully relayed his views at the review hearing, and they have not fallen on deaf ears. Going forwards, the courtroom door remains open to John to express his views at any time on the continuation of treatment, and the guardianship orders that facilitate it.

[43]            However, determining the weight to be accorded to those views is not without its difficulties in this case. Despite Mr Jefferson describing John as being “adamant” in his views, there is a degree of equivocality reflected in the material before the Court.

That arises because John appears to have expressed different views (or at least expressed them differently) to his clinicians. That raises question marks about what are, in fact, John’s views. In addition, an assessment of just how independent John’s views are from those of his family members cannot be made in the absence of evidence directed at that issue. Nor can an evaluation of what may be prompting the concerns (for example, social inconvenience or philosophical opposition) be made on the material presently before the Court.

[44]            Importantly, there is no evidence before the Court from which an assessment of John’s maturity and ability to comprehend what he has been told may be made. The fact that John did not appear to relate the need for treatment to any concept of the consequences that might follow if treatment were to cease suggests that John may not fully comprehend the magnitude of decisions around treatment. Furthermore, James indicated through counsel that he did not consider John to be emotionally mature enough to make decisions regarding treatment for himself. That opinion holds significant weight in my view.

[45]            Calling for further evidence directed at this point is not justified in the circumstances. It cannot be in John’s best interests to require him to engage with further health professionals, when he has indicated a desire not to do so. Nor is it consistent with protecting John’s welfare to draw him into Court processes in circumstances where all parties favour continuing the status quo. Forcing John to confront difficult decisions which he may not want, nor be ready, to confront, is not in anybody’s interests, least of all John’s.

[46]            In any respect, even if that further evidence was made available, it is unlikely to alter the overall conclusion about whether the guardianship orders should continue at this stage. Although John’s views on treatment are to be accorded significant weight, they are not determinative. Ultimately, the decision about whether to continue the guardianship orders must be made on the basis of what is in John’s best interests and welfare.

[47]            In that respect, the medical evidence before the Court shows that HIV continues to present “a real and substantial risk” to John’s health that could be fatal if

he does not receive medical treatment.14 The treatment John is receiving is in accordance with best practice for the management of paediatric HIV, and the evidence suggests that John’s treatment will improve or at least ameliorate his condition.15 Despite his cooperative and supportive approach, James’ beliefs mean that he is unable to ensure that John receives the treatment he requires. Continuing the guardianship orders to facilitate treatment is therefore necessary to keep John safe.16

[48]            Accordingly, even taken at their highest, John’s present views regarding treatment cannot trump the overall assessment of what is in his best interests and welfare. Treatment, and the guardianship orders that facilitate that treatment, must be continued to protect John from harm.

Result

[49]The guardianship orders are to be continued.

[50]I make the following orders:

(1)The orders made by Keane J appointing the Court as John’s guardian until he becomes 16 and the appointment of John’s father as the Court’s agent on the terms and conditions are to continue pending further order of the Court.

(2)The appointment of the two clinicians named in the application as the Court’s agents to manage John’s clinical care as set out at [34] of the original orders is to continue with the addition made to order [34](c)(vii) as set out in the judgment on review.

(3)I direct a telephone conference to be convened no later than  Friday,  2 October 2020 to address any directions required to prepare for the expiry of the orders in 2021.

14  Where the issue is the provision of medical care parental rights will only be overridden where   there is “a real or substantial risk” to the child’s health, see Re J (An Infant): B v B v Director- General of Social Welfare [1996] 2 NZLR 134 (CA).

15 Waikato DHB v FF and MM HC Hamilton CIV 2008-419-1471, 5 December 2008.

16 Care of Children Act 2004, s 5(a).

(4)Leave is reserved to the Board, to John’s father, and to the lawyer for John to apply to the Court for an earlier review of these orders if there is a material change in circumstances.

(5)The Board, John’s father, and the lawyer appointed for John, must file and serve a memorandum with the Court informing the Court of any material change in circumstances.

(6)Final orders suppressing the names and any detail identifying John, his father James, his stepmother, siblings, and the names and any detail identifying his responsible clinicians shall continue. These orders must be complied with by any technical, professional or statistical publications as well as by the mainstream media. Access to the Court file is also prohibited without leave, and leave will not be granted without the parties being heard.17

(7)I direct a copy of this judgment be disclosed to counsel and the parties only so that they may identify any parts of the judgment that may require redaction to maintain the orders in (f) above. If no memoranda are received by 4.00 pm, Monday, 6 May 2019, the judgment shall become publicly available.

Edwards J

Counsel:     P W Le Cren, Auckland

S R Jefferson QC, Auckland M K Macnab, Auckland

17     Care of Children Act 2004, s 139; Family Courts Act 1980, ss 11B, 11C, 11D; High Court Rules rr 3.12, 3.13, 7.19; Taylor v Attorney-General [1975] 2 NZLR 675 (CA).