Updates and background for this project (Digest)

• This report
• The meaning of consent
• The reasons for requiring consent
• The current law relating to consent: a patchwork
• Reforming the law on consent
• Privacy and consent to health care
• Order of discussion of the Commission’s reforms

THIS REPORT

1.1 This report is about young people, meaning people below 18 years of age, and the laws that determine when they can make decisions about their health care and when others can make those decisions for them. Young people are not necessarily free to consent to or refuse health care on their own, but are instead constrained by rules that decide when they can do so, and when their parents or guardians, or the State (through its courts and tribunals) can do so for them. By contrast, adults are generally much freer to make these types of decisions on their own, even if those decisions might sometimes seem foolish or harmful to them.

1.2 The Law Reform Commission has reviewed the rules that regulate and impose restrictions on the decision-making process for young people’s health care in New South Wales. This report marks the final stage of that review.¹ We have concluded that the current law seems to have gained general support but is, at the same time, disparate, fragmented, often incomplete or uncertain, and sometimes out-of-date and obsolete. There is confusion about its interpretation, and perhaps – although this is difficult to ascertain in any empirically demonstrable way – inconsistency in its application. More fundamentally, the incremental developments of the law have meant that it lacks any considered and uniform statement about the rights and interests of young people, their parents, and others involved in the decision-making process.

1.3 We have re-examined the justifications for the current law, including the restrictions imposed on young people and their parents, and consulted on its practical operation. We have paid special attention to whether or not the law appropriately recognises the rights and interests of young people and their parents or guardians, at the same time as adequately protecting health practitioners.² Central to the recommendations in this report is the implementation of a new legislative framework to regulate the assessment of a young person’s competence to consent to or refuse health care, and to delineate the extent of a parent’s and the State’s involvement in the decision-making after that assessment. The scope and purposes of this legislative framework are set out in Recommendation 1 below, and the details of its provisions are contained in the ensuing recommendations of this report.

1.4 A number of preliminary matters, which are basic to an understanding of this area of the law and to the Commission’s recommendations, are addressed in this introductory chapter. They consist of a discussion of:

• the legal concept of consent (what it means and why it is required in a health care setting);
• the patchwork nature of the current law dealing with consent; and
• our general approach towards reform of this area.

1.5 “Consent” is a word that is central to the terms of the Commission’s review. But as a legal concept, consent to health care can mean several things. Put more precisely, there are several factors that together make up the legal concept of consent. While the Commission was asked to report on the law relating to young people’s “consent” to medical treatment, it is clear that we were intended to focus on one aspect of consent, that is, capacity to consent.

1.6 It is a general principle of law that a person must consent to health care before it can be lawfully provided.³ A practitioner who treats someone without first gaining a valid consent for the treatment exposes himself or herself to legal liability, at least where the treatment has involved physical contact. In order for a person to be able to give a valid consent to health care (that is, one that can be legally acted upon), that person must:

• have the legal capacity to consent, and
• give the consent voluntarily.

1.7 Capacity sets a minimum standard of decision-making skills that is required in order to recognise the validity of a person’s decision. If these skills are diminished in a particular individual because of some impairment and do not reach this minimum standard, then the law will not allow that person’s decision to be acted upon because it cannot be said to reflect a real choice made by a free-thinking individual. The law generally assumes that adults have capacity, or competence, to make decisions about health care, and for this reason capacity to consent is not usually in issue. That assumption can be rebutted if an adult’s capacity can be shown to be impaired in some way, for example, by mental illness, intellectual disability, or some temporary cause such as unconsciousness. The presence of an impairment such as these does not in itself mean that the adult lacks capacity: he or she will still be considered competent if he or she is capable of understanding in broad terms the nature of what is proposed.⁴

1.8 For young people, however, capacity to consent is a real issue because the law has traditionally assumed that young people lack capacity to make health care decisions by reason of their immaturity. Their parents have generally been given the responsibility of making those decisions on their behalf. The law has developed to a point where it is willing to recognise that young people may have sufficient maturity to be given decision-making responsibility in relation to their own health care. But, unlike adults, the law requires something more than a broad understanding in order to recognise a young person’s competence: the young person must have sufficient understanding and intelligence to enable him or her to understand fully what is proposed.⁵ It is this standard for legal competence that has come under increasing scrutiny in the context of a broader discussion of the appropriate role for young people in making decisions about health care, and it is this aspect of consent that is central to the Commission’s present review.

Voluntariness is another feature of consent

1.9 The requirement that consent be given voluntarily is another way of ensuring that legal force is given only to those decisions that reflect a person’s real choice, free from interference by others. This second aspect of consent is outside the terms of this reference. In brief, it means that, before treating a patient, a health practitioner must be satisfied that the patient’s apparent consent really represents the will of the patient, rather than that of a third person who has overborne the patient’s will.⁶

Consent must also be informed

1.10 There is another legal principle that requires a health practitioner to inform a patient of the material risks of a treatment or procedure before obtaining the patient’s consent to it. A risk is material, and therefore required to be disclosed to the patient, if a reasonable person, in the patient’s position, would attach significance to it, or if the practitioner is, or should reasonably be, aware that the particular patient would be likely to attach significance to it.⁷ This is sometimes known as the requirement for “informed consent”, a term derived from American jurisprudence. The term is misleading in so far as it suggests that the duty to inform is a factor that affects the validity of a patient’s consent.⁸ In fact, failure to disclose all the material risks does not mean that the patient has not given a valid consent to the health care in question. Instead, it means that the practitioner may be found to have breached his or her duty of care to the patient, and may be liable in negligence, provided it can be shown that, if properly informed, the patient would have reached a different decision.⁹

Sometimes the distinction between capacity to consent and “informed consent” becomes blurred

1.11 The requirement for capacity to consent focuses on the quality of a patient’s understanding of a proposed treatment or procedure. By contrast, the duty to disclose (or gain “informed consent”) focuses on the information that a practitioner must communicate to the patient. These are two clearly distinct concepts, with different consequences: lack of capacity means that the law will not recognise ostensible consent to a health care procedure, whereas failure to inform does not affect the validity of consent but may mean that the practitioner has been negligent in the discharge of his or her duty of care and, accordingly, may be liable for damages for breach of that duty.

1.12 This report is not concerned with the law relating to the duty to disclose, or “informed consent”. We mention it here only to acknowledge that at times the distinction between capacity to consent and informed consent may become blurred. This is particularly so when the assessment of a person’s capacity to consent is formulated in terms of his or her understanding of “the information which is material to the decision, especially as to the likely consequences of having or not having the treatment in question”.¹⁰ An understanding of the “likely consequences” of a procedure could include an understanding of its “material risks”. But while there may sometimes be an overlap in the framing of the tests, there will generally need to be a greater failure of communication between doctor and patient to render a patient incapable of consenting than that necessary to indicate a breach of the doctor’s duty to inform.¹¹

THE REASONS FOR REQUIRING CONSENT

1.13 Consent serves more than one purpose in health law.¹² For instance, it can operate as a defence or immunity in order to validate conduct that would otherwise be unlawful. This conception of consent applies most easily to situations where a practitioner is providing health care that involves physical contact with a patient. The common law, on which our current law is based,¹³ considers this kind of contact to be an unlawful trespass to the person, amounting either to a battery, assault, or false imprisonment. The only way in which such contact is legally permissible is if a valid consent to the contact has been first obtained.¹⁴ Consent therefore serves a straightforward and easily defined purpose in this context: it is the mechanism by which physical contact with a patient is made lawful in order for a practitioner to avoid liability for trespass.

1.14 In the context of young people’s health care, consent can serve a broader purpose beyond acting as a defence.¹⁵ It can be used to assert a positive entitlement where there is a dispute about the substantive rights of those involved in the health care decision-making process.¹⁶ In particular, it can signify an entitlement of a parent or a young person to be involved in or to be ultimately responsible for that decision-making. The leading case of Gillick v West Norfolk and Wisbech Area Health Authority¹⁷ is an example. The case concerned a guidance issued to local authorities by the relevant government department about the circumstances in which it was appropriate to give advice about contraception to girls under the age of 16, including the circumstances in which such advice could be given without the knowledge and consent of the girls’ parents. A mother of teenage daughters sought a declaration from her local authority that it would give no contraceptive advice to her girls under the age of 16 without her knowledge and consent. The availability of the declaration depended, among other things, on whether or not girls under the age of 16 had the capacity to consent themselves to medical treatment of this nature. The House of Lords held, by majority, that they did, provided they passed the legal test for capacity set down by the House of Lords in the case.

1.15 Gillick was not a case where a specific treatment or procedure had already been carried out on a particular person, for which proof of a valid consent was sought as a defence to a claim for trespass. Nor did the type of health care in question (contraceptive treatment and advice) necessarily involve any suggestion of bodily contact that might expose a practitioner to liability for trespass.¹⁸ Instead, the dispute turned on whether a parent could lawfully veto the provision of contraceptive services consented to by his or her child.

1.16 Whether it is being relied on defensively, in order to avoid liability for trespass, or whether it is asserted as a means of claiming involvement in a health care decision concerning a young person, consent may ultimately be described as acting as an expression of individual autonomy. “Autonomy” is a word that is used often in the literature in relation to consent.¹⁹ Although it is seldom precisely defined, it clearly entails notions of liberty, privacy, dignity, and self-respect. These are themselves amorphous concepts, which many have attempted to define and some have criticised as incoherent and unhelpful in legal discourse.²⁰ They nevertheless reflect values that have traditionally been given importance in our law, even though their precise meanings may vary depending on the situation. The general prohibition against unauthorised physical contact with another person is one manifestation of the notion of individual autonomy, in this context conceived of in terms of physical integrity and inviolability. The law protects the individual from physical interference by another, and recognises his or her choice whether to allow such contact to be made. The decision in Gillick reflects a different conception of autonomy, one that is not so much concerned with protecting a person’s physical integrity, but nonetheless refers back to the notion of individual liberty as this notion ought to be applied to young people and their freedom to choose or to decide about their health care themselves.

1.17 Australian law, derived from the common law tradition, has tended to view consent to health care in terms of a defence for health practitioners who might otherwise be liable for unauthorised physical contact.²¹ A problem which the Commission has had to face in devising a new legislative scheme for this area is in finding a way to move beyond this traditionally narrow focus of the law, based strongly on the notion of bodily integrity as the foundation for the requirement for consent to health care (and therefore requiring physical contact in order for the provision of unauthorised health care to be redressed in any legally meaningful way), towards a broader conception of the purposes served by the law of consent. This problem has been compounded by the fact that much of the literature on this topic, as well as more recent case law overseas, reflect this broader conception of consent as a means of asserting certain entitlements, which tend to be framed in terms of “human rights” or simply “rights”: the “right” to choose, the “right” to autonomy, or, on the other hand, a parent’s “right” to be involved in or to control the raising of his or her child. While health law in other common law countries originated from the same narrow conception of consent grounded in protecting physical integrity, many of these countries can now more easily facilitate a discussion of a broader conception of consent in the context of such “rights”, since they now have human rights instruments. While in Australia we also commonly refer to patients’ rights, young people’s rights, and parents’ rights, these do not necessarily amount to legally enforceable entitlements. A further challenge for the Commission has therefore been to adapt the modern language of consent that now pervades the case law and more general discussions in the common law world to the Australian context, which does not necessarily recognise any legal claim to the rights relied on as part of this broader conception of consent.

THE CURRENT LAW RELATING TO CONSENT: A PATCHWORK

1.18 In Chapter 4 of this report, we discuss the current law relating to young people’s consent to health care in detail. At this stage, it is enough to make brief reference to the mixture of common law (or judge-made law) and statute that make up the law in this area. The patchwork nature of the law makes it confusing because the interaction of the various disparate rules can be uncertain. Consequently, it can be difficult for practitioners and others involved in the area to know with any certainty what the rules are and how exactly to apply them.

1.19 In New South Wales, s 49 of the Minors (Property and Contracts) Act 1970 (NSW) relates to the general question of young people’s capacity to consent to medical and dental treatment. Section 49 sets out the situations where a medical or dental practitioner may rely on a young person’s or a parent’s consent to avoid civil liability for trespass when providing treatment to a young person. The section does not set down an exhaustive test for determining young people’s competence to consent to health care. Its purpose is much more limited, and is derived from legal reforms relating to young people’s capacity to enter into commercial transactions rather than from detailed policies concerning their rights and role in health care decision-making.

1.20 In addition to s 49, the common law has developed its own rules for determining when a young person or his or her parent can consent to health care. A major source of confusion about the current law in New South Wales relates to the interaction of s 49 of the Minors (Property and Contracts) Act 1970 with the common law. Because s 49 is very limited in its purpose and scope, the common law still plays an important part in the law relating to young people’s consent. Indeed, the common law in its current form developed after the enactment of s 49 and has mostly surpassed the limitations of the statutory provision in so far as it contains a broader statement about the roles and responsibilities of young people and their parents in making decisions about health care. The developments of the common law have meant that s 49 of the Minors (Property and Contracts) Act 1970 is now to a large extent redundant, but continues to cause confusion among practitioners.

1.21 In addition to these general rules relating to competence to consent, there are a number of legislative provisions that relate to young people’s involvement in health care decision-making in specific situations. These provisions can be found in the Children and Young Persons (Care and Protection) Act 1998 (NSW), the Guardianship Act 1987 (NSW), the Mental Health Act 2007 and the Human Tissue Act 1983 (NSW). As well, both the State’s Supreme Court, through its inherent jurisdiction, and the Family Court, under the Family Law Act 1975 (Cth), have broad powers to intervene in decisions about young people’s health care. These powers potentially act as constraints on the ability of young people and parents to consent to or refuse health care.

REFORMING THE LAW ON CONSENT

Recommendation 1

Legislation should regulate the decision-making process for young people’s health care. The legislation should contain rules for determining:
• when a young person is legally entitled to make a decision about his or her health care generally;
• when a young person is legally entitled to make a decision about particular types of health care; and
• when a young person’s parent, legal guardian, caregiver or other substitute decision-maker is legally entitled to override a young person’s decision about his or her health care.
The legislation should also provide:
• for the legal consequences of compliance or non-compliance with its provisions;
• definitions of key terms; and
• a statement of principles to guide the interpretation and application of the legislation.

1.22 The uncertainty in the relationship between the common law and statute, as well as in the interrelationship of the various statutory provisions, is reason enough to reform the law in this area. Such reform could seek to clarify and consolidate as much as possible the disparate rules that currently govern young people’s consent to health care. But more than this, it could delineate the roles and responsibilities of those involved in the decision-making process, based more soundly than the current law on considered policies that have tested the validity of old assumptions.

1.23 Recommendation 1 above proposes a new statutory framework to regulate the general roles of young people and their parents, or other substitute decision-makers, in the decision-making process for young people’s health care. This framework, supported in submissions,²² is the central reform of this report, on which the rest of its reforms are based. Recommendation 1 articulates the scope and purposes of this framework. Ensuing recommendations will deal with its substance.

1.24 Before dealing specifically with the details of our recommendations, there are a number of preliminary matters that we should first address here. These relate to:

• the extent to which the statutory framework is intended to interact with the common law, rather than replace it;
• the extent to which the framework will consolidate existing statutory provisions versus leaving some specific areas of existing statutory regulation untouched; and
• the appropriate location of the new framework, that is, whether it should be implemented through the enactment of a separate Act or inserted into existing legislation.

1.25 The Commission’s recommended legislation is not intended to replace entirely the operation of the common law. In agreement with all submissions that addressed this issue,²³ we are not aiming to codify the law in this area, to the exclusion of the common law. Our statutory framework generally aims to clarify the existing law, including the common law, and in many respects to modify or build on the current law. But the common law will continue to supplement the new legislation with the application of general doctrines. For example, the overarching jurisdiction under which the courts have a supervisory power to protect young people’s best interests will continue to operate.²⁴

The extent of consolidation of statutory provisions within the new framework

1.26 As for the consolidation of statutory provisions, we have noted the number of disparate provisions dealing with health care decision-making for young people that currently exist in New South Wales. There is at least a superficial attraction in the idea of drawing all of these provisions together in a single piece of legislation to regulate all aspects of consent to young people’s health care. This would make the law simpler and more readily understandable.²⁵

1.27 The Commission has, however, ultimately concluded that consolidation to this extent is undesirable. While rules relating to the general assessment of young people’s competence to consent to or refuse health care can, appropriately, be consolidated in the new legislative framework that we are recommending, a number of the statutory provisions to which we referred in paragraph 1.21 relate to specific legislative regimes set up to deal with specific health or other issues. Questions of capacity may require different approaches or special rules in the context of such legislative regimes. We agree with the NSW Commission for Children and Young People that it is appropriate that any such rules should continue to appear in the legislation in question.²⁶

1.28 In our Issues Paper, we discussed special rules of consent that may affect young people in a number of statutory contexts: those who suffer from mental illness;²⁷ those who are subject to the provisions of the Guardianship Act;²⁸ those who are in need of care and protection or are in out-of-home care;²⁹ and those who donate tissue under the Human Tissue Act 1983 (NSW).³⁰ Concerns have also arisen recently about the apparent ease with which young people are able to consent to cosmetic treatments. Following extensive research and consultation, we have concluded that it is inappropriate to relocate into our proposed legislative regime statutory provisions that apply to aspects of young people’s consent to health care in these areas of law. We discuss below some of the concerns that have come to our attention in relation to these specific statutory regimes as well as aspects of these regimes that are in possible need of reform. We conclude with our reasons for deciding ultimately not to recommend any such reform in the course of this present review.

Matters excluded from the new framework

Statutory provisions relating to young people’s consent and mental illness, guardianship, and children in need of care and protection or in out-of-home care

1.29 The Mental Health Act 2007 (NSW) contains provisions dealing with the voluntary admission of “children” to mental health facilities.³¹ “Children” refers to persons below the age of 16, and different admission rules apply depending on whether the person is 14 or 15 years of age, or under 14 years of age. There is no reason why such rules should necessarily be the same as those relating to the general rules of consent to health care. Their evaluation must necessarily reflect the extent to which they facilitate the objectives of a statutory regime designed to provide for the care, treatment and control of mentally ill or mentally disordered people.

1.30 Similarly, the special rules governing consent to the medical and dental treatment of persons subject to the Guardianship Act 1987 (NSW) must necessarily depend on the extent to which they promote the health and well-being of people over 16 who lack the ability to consent to such treatment and who are subject to the control of the Guardianship Tribunal.³²

1.31 Again, the special consent provisions dealing with children in need of care and protection or in out-of-home care must necessarily reflect the general policy of the State in ensuring that all young persons receive such care and protection as is necessary for their safety, welfare and well-being and, specifically, for facilitating the provision of such care and protection where the young person is in out-of-home care.³³

Statutory provisions relating to the donation of tissue and blood

1.32 The Human Tissue Act 1983 (NSW) (the “Human Tissue Act”) allows a parent of a child to consent to the removal from a living child’s body of specified regenerative tissue for the purpose of its transplantation to the body of a parent (being a biological parent, step-parent or adoptive parent), brother or sister of the child.³⁴ A child is defined as any person below the age of 18 and who is not married.³⁵ Regenerative tissue is defined as tissue which, after injury or removal, is replaced in the body of a living person by natural processes of growth or repair.³⁶ Bone marrow is the prime example of regenerative tissue that is the subject of transplantation.

1.33 Parental consent alone is not sufficient authority for the removal of a child’s regenerative tissue. A further requirement under the Human Tissue Act is certification by a medical practitioner that:

• the consent of a parent was given in the presence of the medical practitioner,
• the medical practitioner explained to the parent and to the child the nature and effect of the removal from the child’s body of the tissue and the intended effect of its proposed transplantation, and
• the medical practitioner is satisfied that, at the time the consent was given: the parent and the child were each of sound mind; the parent and the child each understood the nature and effect of the removal of the tissue and the intended effect of its proposed transplantation; the consent was freely given; and the child was in agreement with the proposed removal and transplantation of the tissue.³⁷

• the current legal requirements for tissue donation by a child are sufficient to safeguard the interests of the child donor or whether a more rigorous independent assessment should be adopted;
• certain children (for example, older adolescents who understand the nature and effect of the proposed tissue donation) should be able to give their personal consent to the procedure;
• provision should be made to allow the removal of non-regenerative tissue (for example, a kidney, liver or lung lobe) from a living child for transplantation purposes;
• the range of allowable recipients should be widened beyond the child’s biological parent, step-parent, adoptive parent, brother or sister.³⁹

(a) its transfusion to another person, or

(b) its use, or the use of any of its constituents, for other therapeutic purposes or for medical or scientific purposes, other than for the purpose of the treatment of the person from whom the blood is removed.⁴⁰

A parent or guardian of a child who is under the age of 16 years may consent in writing to the removal of blood from the child’s body for a purpose referred to in section 19 (a) or (b), but that consent is only effective if at the time the consent is given:

(a) the child is in agreement with the removal of the blood from the child’s body, and

(b) a medical practitioner advises the parent or guardian that any risk to the child’s health (including psychological and emotional health) caused by the removal of the blood is minimal.

A parent or guardian of a child who is under the age of 16 years may consent in writing to the removal of blood from the child’s body without the consent of the child for the purpose of using the blood in the treatment of the child’s parent (being the biological parent, step-parent or adoptive parent), brother or sister, but that consent is only effective if:

(a) a medical practitioner (other than the medical practitioner responsible for treating the child’s parent, brother or sister) certifies in writing that, in the opinion of the medical practitioner:


(i) the child is unable to understand the nature and effect of the removal of blood from the child’s body, and

(ii) any risk to the child’s health (including psychological and emotional health) caused by the removal of the blood is minimal, and


(b) a medical practitioner certifies in writing that the parent, brother or sister is likely to die or suffer serious damage to his or her health unless blood removed from the child is used in the treatment.

1.39 The current provisions of s 19 to 20B of the Human Tissue Act are the result of amendments by the Health Legislation Amendment Act 2004 (NSW), which effectively lowered the age of consent for blood donation from 18 to 16. The amendments reflect the recommendations by the NSW Department of Health in a 2002 report which reviewed the provisions of the Human Tissue Act on blood donation. The report said:

The majority of submissions were of the view that there should be no parental consent requirement in respect of 16 and 17 year old children donating blood. It was argued that society and the law recognise that, at such an age, children are capable of consenting to their own medical treatment.⁴¹

1.41 The provisions relating to consent to the donation of blood are not the same as those relating to the donation of regenerative tissue. This issue is of importance in relation to the donation of peripheral blood stem cells, which can be used as an alternative to bone marrow transplantation for some cancer patients and others with medical conditions requiring transplantation of hematopoietic stem cells. It is unclear whether this type of donation is, for the purposes of the consent rules, donation of regenerative tissue or whether it is blood donation. If the latter, 16- and 17-year-olds can consent to the donation for the purposes listed in paragraph 1.35, but not if the donation is classified as one of regenerative tissue.

1.42 Clearly this issue, and the others identified in the preceding paragraphs, need to be addressed, but in the context of an overall review of the Human Tissue Act, which is now an old piece of legislation, though one that has been subject to some amendment. It is only such a review that could determine whether the general rules relating to consent to health care provide a relevant analogy that facilitates the attainment of the objectives of that particular legislation.

Cosmetic surgery

1.43 Since the publication of our Issues Paper in 2004, media reports have suggested that there is a growing demand for cosmetic surgery among young people.⁴³ At least two State governments have taken these claims seriously enough to flag the possibility of legislative action. The Queensland Health Department recently released a discussion paper seeking the public’s views on young people using cosmetic surgery and solariums.⁴⁴ It states cautiously “there is some evidence that there may be an increasing number of children and young people in Queensland and Australia who are using cosmetic surgery,” and adds that there are no official statistics as to the amount of cosmetic surgery performed in the country. It notes that, apart from media reporting, including the results of a survey published in an Australian young girls magazine, no other evidence is offered. In 2006, the NSW government was said to be considering introducing legislation to make it more difficult for teenagers to undergo cosmetic surgery following revelations by a contestant on a television reality program.⁴⁵

1.44 As there appears to be no statistical research backing up claims of an increasing number of young people seeking such procedures as breast implants, liposuction and botox injections, it is impossible to know if there really is cause for concern. It should be noted that certain procedures that could be described as cosmetic have been performed on young people for many years, in the Commission’s view reasonably and without controversy. Procedures such as rhinoplasty (“nose job”), otoplasty (ear pinning) and removal of birthmarks are often performed to prevent embarrassment and social withdrawal. Any moves to restrict access by young people to cosmetic surgery would need to be mindful of whether this places unnecessary obstacles in the path of procuring commonly performed and unobjectionable procedures. The Commission is not suggesting that any procedure that reduces embarrassment is thereby reasonable and acceptable.

1.45 Regulating this discrete area of treatment may be a more complicated task than might appear to be the case. What exactly constitutes “cosmetic surgery”, what circumstances define whether it is acceptable or not, and who should be empowered to make the necessary decisions? A simple answer may be to require parental consent for such surgery. However, the reality is that little if any cosmetic surgery would be carried out today on young people without parental consent, given both the costs – running into thousands of dollars and for which Medicare rebates are not available if for non-medical reasons – and the period of convalescence that follows.⁴⁶ It can be reasonably inferred that most cosmetic surgery being performed on young people would already have parental consent.

1.46 In 1999, the report was published of a Committee of Inquiry (“the Committee”) appointed by the NSW Health Minister to investigate cosmetic surgery and make recommendations with regard to consumer safeguards.⁴⁷ This comprehensive inquiry was prompted by concerns about the way cosmetic surgery procedures were being promoted and their quality and safety.⁴⁸ Among the issues identified was the way in which cosmetic surgery operates outside the framework for organised medicine in a number of ways. For example, it “does not come under the auspices of any particular professional body that can establish competency standards and appropriate training and qualifications.”⁴⁹ Furthermore, any registered doctor can call himself or herself a surgeon, and there is no legal requirement to have specialised skills and knowledge to be called a “cosmetic surgeon” or specialist. The report’s recommendations favoured the regulation of the “industry”, and included a call to establish a Cosmetic Surgery Credentialling Council. In finding that there appeared to be a lack of literature on patients who are not appropriate candidates for breast implants “for psychological reasons and by reasons of youth”, the Committee recommended that such a council develop a code of ethics on appropriate patient selection.⁵⁰

1.47 Although a Credentialling Council was established two years after the report’s release, it was disbanded without reaching agreement.⁵¹ None of the Committee’s recommendations have yet been implemented. Although the inquiry made no specific mention of young people with regard to cosmetic surgery, the Commission believes that the first step in safeguarding their interests, along with those of all potential consumers, should be the introduction of measures to regulate the industry along the lines recommended by the Committee. While it is outside the scope of the Commission’s terms of reference to make recommendations regarding the operation of the cosmetic surgery industry, in the Commission’s view the interests of young people coincide with those of the wider community and would be well-served by a holistic approach to regulation of this area. In the context of cosmetic surgery, it is difficult to understand how the well-being of young people can be protected without implementing industry-wide safeguards.

Medical and scientific research and clinical trials

1.48 This report does not make any recommendations relating to the involvement of young people in medical and scientific research or clinical trials. We are aware that this is an issue that is attracting increasing public attention and debate.⁵² The practical consequence of uncertainty surrounding the legality of involving young people in research is the stultifying effect this may have on the advancement of research in treatment that may benefit young people and a limited availability on the market of many drugs that have not been properly tested on young people. While we acknowledge the benefits in achieving clarity in the law surrounding this sometimes controversial issue, we do not consider it appropriate to consider young people’s involvement in research in this report. Strictly speaking, this issue is outside the terms of the Commission’s reference, since it does not focus on the provision of treatment or health care. More fundamentally, we do not consider that this is an appropriate forum to discuss the question of young people’s involvement in research. This is an area that is largely regulated by its own separate body of guidelines and ethics committees, and is subject to the overarching role of the National Health and Medical Research Council and the National Statement on Ethical Conduct in Human Research. It is far more appropriate that this issue be debated within the context of the development of additional guidelines, if necessary, overseen by the NH&MRC.

The location of statutory reform

1.49 The next preliminary matter is the appropriate location of the new legislative framework. That is, should the Commission’s recommendations be enacted as a new and separate piece of legislation dealing with consent to young people’s health care, or should they be included within an existing piece of legislation? At present, there is no general Act that deals broadly with issues of consent to and refusal of health care, applicable both to adults as well as young people. Consequently, it is difficult to justify the introduction of a separate Act dealing with these issues solely as they relate to young people, unless such an Act was used as a precursor to a more comprehensive overhaul of the laws relating to the decision-making process in health care. We would certainly favour this kind of initiative. But in its absence, there is no obvious place to insert our statutory reforms within existing legislation in New South Wales. The most likely candidates are Acts relating to “young people” or “children”, or Acts relating to health.

Acts dealing with children

1.50 Our recommended statutory reforms could be included within the Minors (Property and Contracts) Act 1970 (NSW), which contains general provisions relating to young people’s capacity to enter commercial transactions. However, we consider that the terminology of this Act is now fairly dated, and the focus of the Act is essentially the commercial world and young people’s place in it. It is no longer a suitable Act to deal with a broader consideration of young people’s health care than is currently provided in s 49 of that Act.⁵³

1.51 Our statutory reforms could be inserted into the Children and Young Persons (Care and Protection) Act 1998. Our reforms probably relate the closest to the subject matter of this Act. However, while this Act contains provisions of general application to young people, its focus is clearly on children and young people who come into contact with the State’s child welfare services. Moreover, while the use of the distinction between “child” and “young person” was progressive at the time of its inclusion in this Act, marking a separate period of development in adolescence where a person was not yet an adult but no longer a child,⁵⁴ we would not wish to see the continuation of this distinction in terminology in our statutory reforms. The use of the two terms makes the Act unnecessarily complicated and less accessible because it does not make restrictions on the application of particular provisions explicit, and is also not a distinction that is used uniformly throughout the Act.⁵⁵ We consider “young person” now a more appropriate term to use to refer to all people below the age of 18, since “child” may be considered by some as patronising. “Young person” better emphasises the individuality and humanity of all young people. If our statutory reforms were inserted into this Act, we would prefer that the Act be amended to extend the definition of young person to anybody below the age of 18, and that the use of “child” be removed. The Act would also need to be renamed to reflect its broader scope.

Acts dealing with health

1.52 Alternatively, our recommended provisions for the general assessment of competence could be inserted into an existing piece of legislation relating to health, such as the Health Care Liability Act 2001 (NSW) or the Health Care Complaints Act 1993 (NSW). Neither of these is really satisfactory because each has essentially a narrower focus on legal liability of practitioners and mechanisms for complaining about misconduct, rather than a more general statement about patients’ entitlements. Ideally, a separate piece of legislation should be enacted to deal with the general question of patients’ rights to consent to and refuse health care, relating both to adults and young people, such as operates in South Australia.⁵⁶ An Act of this kind could consider the issue of consent in general situations and in relation to more specific instances, such as consent to palliative care and advance care directives. However, it is beyond the terms of the Commission’s reference to consider the question of consent for the general population.

The Commission’s approach

1.53 In the absence of a separate Act that sets out a general framework for health care decision-making for adults and young people, we take the view that the location of our statutory framework is properly a matter for Parliamentary Counsel to consider, and we make no recommendation relating to this issue. For the purposes of this report, our recommendations refer to our reform simply as “legislation”, whatever form that legislation ultimately takes.

PRIVACY AND CONSENT TO HEALTH CARE

1.54 Our Issues Paper canvassed at length the relationship between the law relating to young people’s consent to health care and the law of privacy.⁵⁷ We identified four circumstances in which the law concerning permissible disclosure of a young person’s health information may stand in need of reform:

• when parents request disclosure of their child’s health information;
• when the consent of the patient renders disclosure permissible;
• when disclosure is authorised by the Health Records and Information Privacy Act 2002 (NSW); and
• when the public interest in preventing harm to a young person requires disclosure.

1.56 Since the publication of our Issues Paper, the Commission has received a reference to inquire more broadly into the law of privacy.⁵⁸ We have published two Consultation Papers pursuant to this reference: one that explores the possible introduction of a statutory cause of action for invasion of privacy in New South Wales;⁵⁹ another that surveys the protection afforded privacy by current legislation in New South Wales.⁶⁰ The Australian Law Reform Commission has also published a comprehensive report on the law of privacy in Australia.⁶¹ We plan to issue a final report on privacy in 2009.

1.57 Of the topics identified in our Issues Paper, we have no doubt that, with one possible exception, they are better considered in the context of our review of the law of privacy. This is because the topics relate essentially to the protection of a very sensitive type of private information, that relating to the health of an individual. The way in which that information is stored or protected does not generally depend on the age of the individual, and in particular on whether the individual is a minor or an adult.

1.58 The possible exception relates to the extent to which young people should be able to keep medical information from their parents. The prevailing view in the literature is that if a young person has sufficient understanding to consent to a particular medical treatment, the medical practitioner is obliged not only to give such advice but also to keep the consultation confidential from the young person’s parents.⁶² The rationale for this view is that if parents do not have the power to consent to a medical treatment that their child seeks, they do not have the power to obtain medical information about that treatment.

1.59 Other considerations arise concerning young people who lack capacity to consent to a particular medical treatment. There are two competing views. One view is that if a young person proves to be incompetent to consent to a treatment, the medical practitioner may disclose the young person’s medical information to the parents.⁶³ Two arguments support this view. First, the obligation of confidence is based on a person’s autonomy. No obligation of confidence can be owed to a young person who is incompetent to give consent to a medical treatment, since he or she is not capable of exercising autonomy as regards the treatment he or she wanted. Secondly, parents need to know information relevant to the effective discharge of their parental duties of care.⁶⁴ A parent may not be able to ensure the welfare and health of a young person without information about the young person’s health or medical requirements.

1.60 The alternative view is that even where a young person is found to lack the capacity to consent to a particular treatment, the fact that he or she consulted the medical practitioner, and what the medical practitioner has learned in the process of assessing competence for that particular treatment, must be kept confidential, if the young person expressly objects to the disclosure or gave the information with an expectation that it would not be disclosed to others. Such a test requires an inquiry into whether or not the young person can comprehend an obligation of secrecy with respect to the medical information obtained by the medical practitioner.⁶⁵ In support of this view, it is argued that the preservation of confidentiality is not based solely on the recognition of the autonomy of young people. It is also founded on young people’s needs for privacy, which should not be less than those of adults. Moreover, there is a public interest argument relating to effective health services: without the guarantee of confidentiality, many young people will not seek medical advice or treatment.⁶⁶

1.61 The issue of disclosure to parents is likely to arise in situations involving health information that the young person considers to be personal and sensitive in nature, for example information relating to reproduction and sexual health, drug dependency and depression. If a test involving an expectation of non-disclosure were adopted, the nature of the health information in question could simply be a relevant factor in assessing whether or not the test has been met.

1.62 A third approach would be to argue that confidentiality should be based on the type of health information involved. That is, young people should be able to withhold only certain types of health information from their parents.

1.63 With exceptions relating to mandatory reporting laws (such as apply to child abuse), all submissions and consultations argued that medical practitioners should generally respect the confidentiality of information that young people disclosed to them in the course of a medical consultation or proposed medical treatment whether or not the young person was competent to consent to that treatment.⁶⁷ Some submissions added somewhat indeterminate reservations in cases where the young person lacked competence to consent or a parent had consented on behalf of the child. The reservations were expressed in terms that, in such cases, parents should be informed in general terms of the nature and progress of the treatment of their child, though not necessarily in respect of all types of treatment.⁶⁸

1.64 The Commission recognises that, to a degree at least, respect for the privacy of young people’s health care information, notwithstanding the desire of a parent to have access to that information, is integral to the effective operation of the law relating to young people’s consent to health care. Bearing in mind the principles that underpin the legislative regime that we recommend, we incline to the view that doctors should, at least generally, respect the confidentiality of their consultations and the nature of treatment or proposed treatment of young people whether or not the young person understands the nature of the treatment proposed. However, we prefer to reserve our position on this until we have considered all relevant aspects of the law of privacy, particularly how questions of capacity have generally been addressed in the context of privacy law.⁶⁹

ORDER OF DISCUSSION OF THE COMMISSION’S REFORMS

1.65 The rest of this report is concerned with discussing the details of the reforms set up by the proposed legislative framework. These reforms will be discussed in the following order:

• the general principles that the Commission has applied in devising its legislative framework and that should govern its interpretation and application;
• the definitions of key terms of the proposed legislation;
• the general criteria for determining a young person’s competence to make a health care decision, which have been formulated in response to the operation of the current law and its deficiencies;
• the scheme set up for making a health care decision on behalf of a young person who is not competent to make that decision according to the general criteria for competence, including a system for nominating substitute decision-makers to make that decision as well as identifying non-urgent situations where a practitioner may lawfully provide health care which has not been consented to by the person having the decision-making authority;
• the powers of a practitioner to act in emergencies to provide health care to a young person without first obtaining a valid consent;
• legislative prohibitions on the provision of particular types of health care without prior authorisation from a court or tribunal; and
• the consequences of non-compliance with the proposed legislation.

1. See also NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004).

2. For the terms of the Commission’s reference, see p ix.

3. For situations where consent to health care is not a legal prerequisite, see Chapter 7.

4. Rogers v Whitaker (1992) 175 CLR 479, 490, approving Chatterton v Gerson [1981] 1 QB 432, 443 (“[O]nce the patient is informed in broad terms of the nature of the procedure which is intended, and gives her consent, that consent is real”) (Bristow J). See also Re T (Adult: Refusal of Treatment) [1993] Fam 95, 115 (“What is required is that the patient knew in broad terms the nature and effect of the procedure to which consent (or refusal) was given”) (Lord Donaldson MR). Compare Re C (Adult: Refusal of Treatment) [1994] 1 WLR 290, 295 (where Bristow J suggested a higher test for refusal cases).

5. Secretary, Department of Health and Community Services v JWB and SMB (Marion’s case) (1992) 175 CLR 218, 237, approving Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112, especially 189 (Lord Scarman).

6. See Re T (Adult: Refusal of Treatment) [1993] Fam 95, 113-114 (Lord Donaldson MR).

7. See Rogers v Whitaker (1992) 175 CLR 479, 490.

8. Rogers v Whitaker (1992) 175 CLR 479, 490 (Mason CJ, Brennan, Dawson, Toohey and McHugh JJ).

9. By contrast, a claim that a patient’s consent was not valid because the patient was not competent to consent requires proof only of that incompetence, and not that the patient would have chosen differently: Chatterton v Gerson [1981] QB 432, 442-443.

10. Re MB (An Adult: Medical Treatment) [1997] 2 FCR 541, 553 (Butler-Sloss LJ). Consider also British Columbia, Infants Act, RSBC 1996, c. 223 s 17 (defining “consent” in terms of requiring the health care provider to explain, and be satisfied that the young person understands, the nature and consequences, and the reasonably foreseeable benefits and risks, of the health care).

11. Chatterton v Gerson [1981] QB 432, 442 (Bristow J).

12. As, indeed, it does in the law more generally: see D Beyleveld and R Brownsword, Consent In The Law (2007) 5-7 and Ch 3.

13. See Chapter 4.

14. There are exceptions to this general rule where contact will be lawful without prior consent: see Chapter 7.

15. For the application of this conception of consent beyond young people, see M Blake, “Religious beliefs and medical treatment: the challenge to patient consent” (2007) 19 Bond Law Review 26, 28-29.

16. As Beyleveld and Brownsword put it, “while consent can function as a defence against a breach of right or duty, it can also function to create new rights and duties”: see D Beyleveld and R Brownsword, Consent In The Law (2007), 7.

17. [1986] AC 112.

18. The treatment could consist of or include a physical examination (see Lord Brandon at 195), but the majority’s decisions did not depend on physical contact being made. See, for example, Lord Fraser at 162: “… the main question in this appeal is whether a doctor can lawfully prescribe contraception for a girl under 16 years of age, without the consent of her parents”, and Lord Scarman at 180-181: “… the guidance clearly implies that … the parental right to make decisions as to the care of their children … can lawfully be overridden, and that in such cases the doctor may without parental consultation or consent prescribe contraceptive treatment …”.

19. For example, Schloendorff v Society of New York Hospital (1914) 105 NE 92 (Cardozo J); Re T [1992] 3 WLR 782, 786 (Lord Donaldson MR); Marion’s case (1992) 175 CLR 218, 233 (Mason CJ, Dawson, Toohey and Gaudron JJ), 265-69 (Brennan J), 309-11 (McHugh J). For an historical overview of the law of trespass and the notion of autonomy, see D Mendelson, “Historical evolution and modern implications of the concept of consent to and refusal of medical treatment in the context of the law of trespass” (1996) 17 Journal of Legal Medicine 1. For general discussion, see, for example, A Hockton, The Law Of Consent To Medical Treatment (2002), [2-001]; L Thomson, “Whose right to choose? A competent child’s right to consent to and refuse medical treatment in New Zealand” (2001) 8 Canterbury Law Review 145, 146-147; L Bunney, “The capacity of competent minors to consent to and refuse medical treatment” (1997) 5 Journal of Law and Medicine 52, 54. For recent examples of Australian commentators, see M Blake, “Religious beliefs and medical treatment: the challenge to patient consent” (2007) 19 Bond Law Review 26, 28-29; J Potter, “Rewriting the competency rules for children: full recognition of the young person as rights-bearer” (2006) 14 Journal of Law and Medicine 64; E Jackson, Medical Law: Text, Cases, And Materials (2006), especially Ch 4. See also D Beyleveld and R Brownsword, Consent In The Law (2007).

20. For example, see J Ashcroft, “Making sense of dignity” (2005) 31 Journal of Medical Ethics 679; L Kass, Life, Liberty, And The Defense Of Dignity: The Challenge Of Bioethics (2004); D Beyleveld and R Brownsword, Human Dignity In Bioethics And Biolaw (2001).

21. Rogers v Whitaker (1992) 175 CLR 479, 490.

22. NSW Commission for Children & Young People, Submission, [2.4-2.6]; Youth Action Policy Association, Submission, 2; Redfern Legal Centre, Submission, [7.3].

23. NSW Commission for Children & Young People, Submission, [2.4-2.6]; Shopfront Youth Legal Centre, Submission, 13; S Siedleckly, Submission, 21.

24. See para 2.52-2.65 for a discussion of the principles relating to the best interests of the child.

25. See Shopfront Youth Legal Centre, Submission, 13.

26. NSW Commission for Children & Young People, Submission, [2.4-2.6].

27. NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004) Ch 6.

28. NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004) [2.35-2.46].

29. NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004) [7.3-7.12].

30. NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004) [4.26].

31. Mental Health Act 2007 (NSW) s 6.

32. Guardianship Act 1987 (NSW) Pt 5.

33. Children and Young Persons (Care and Protection) Act 1998 (NSW) Ch 9.

34. Human Tissue Act 1983 (NSW) s 10.

35. Human Tissue Act 1983 (NSW) s 2.

36. Human Tissue Act 1983 (NSW) s 4.

37. Human Tissue Act 1983 (NSW) s 11. The medical practitioner who gives this certificate must not be the practitioner who is to remove the tissue from the child: s 14.

38. Northern Sydney and Central Coast Area Health Service v CT [2005] NSWSC 551, [8] (dealing with the donation of peripheral blood cells or bone marrow cells).

39. See T O’Brien, “Bone Marrow Transplantation” (Paper presented at the Public Forum on Minors’ Consent to Medical Treatment, Parliament House, Sydney, 20 November 2006).

40. Human Tissue Act 1983 (NSW) s 19.

41. NSW Department of Health, Review Of The Human Tissue Act 1983: Report – Blood Donation And The Supply Of Blood And Blood Products (April 2002), [2.3].

42. Letter from Mr Garry Wolfe, Operations Manager (NSW/ACT), Australian Red Cross Blood Service, 13 June 2007.

43. For recent examples, see M T Reist, “Body fix the wrong answer for teens”, Sydney Morning Herald (Sydney), 9 May 2008, 13; C Marriner, “Teenage cosmetic surgery queried”, The Age (Melbourne), 31 October 2007, 3; S Das, “’Dear doctor, can you make me look like this please?’”, The Age (Melbourne), 10 March 2007, 3.

44. Queensland Health, Have Your Say: Children and Young People Using Cosmetic Surgery and Solariums in Queensland <http://www.health.qld.gov.au/publications/cos_surg_child.pdf> at 19 November 2007.

45. News-Medical.Net, Reality Show Prompts Stricter Laws for Cosmetic Surgery for Australian Teens (2006) <http://www.news-medical.net/print_article.asp?id=19647> at 13 February 2007.

46. See Medicare, <http:www.medicareaustralia.gov.au/yourhealth/

our_services/medicare/about_medicare/ what_ mc_ covers.shtml> at 20 November 2007.

48. Cosmetic Surgery Report, 1.

49. Cosmetic Surgery Report, 21.

50. Cosmetic Surgery Report, Rec 18.

51. Meeting with Merrilyn Walton, Inquiry Chairperson, 10 January 2007.

52. See NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004), [1.48]; L Sanci, S Sawyer, P Weller, L Bond, G Patton, “Youth health research ethics: time for a mature minor clause?” (2004) 180(7) Medical Journal of Australia 336.

53. See para 4.26-4.32.

54. See NSW Department of Community Services, Community Welfare Legislation Review, Review of the Children (Care and Protection) Act 1987: Recommendations for Law Reform (1997), Rec 1.3, 9-10.

55. Generally, a “child” is defined in the Act as a person below the age of 16: see Children and Young Persons (Care and Protection) Act 1998 (NSW) s 3. But for the purposes of Chapter 13 of the Act (children’s employment), a “child” is defined as a person below the age of 15: see Children and Young Persons (Care and Protection) Act 1998 (NSW) s 221.

56. See Consent to Medical Treatment and Palliative Care 1995 (SA). See para 5.6-5.19.

57. See NSW Law Reform Commission, Minors’ Consent To Medical Treatment, Issues Paper 24 (2004) Ch 9.

58. For the terms of reference of this inquiry, see <www.lawlink.nsw.gov.au/lawlink/lrc/ll_lrc.nsf/pages/LRC_cref113>.

59. NSW Law Reform Commission, Invasion of Privacy, Consultation Paper 1 (June 2007).

60. NSW Law Reform Commission, Privacy Legislation In NSW, Consultation Paper 3 (May 2008).

61. Australian Law Reform Commission, For Your Information: Australian Privacy Law and Practice, Report 108 (May 2008).

62. I O’Connor and A McMillan, “Youth, the law and health: emerging issues in service delivery” (April 1987) Queensland Law Society Journal 95; S P De Cruz, “Parents, doctors and children: the Gillick case and beyond” [1987] Journal of Social Welfare Law 93; I Kennedy, “The doctor, the pill and the fifteen year old girl” in I Kennedy (ed), Treat Me Right (1988). In the UK, the General Medical Council’s guidance on confidentiality titled Confidentiality: protecting and providing information (2000) contains special rules on children who cannot consent to medical treatment. The guidance’s general rules, that is, those that must be observed in relation to adult patients, apply to children who are competent to consent to a medical treatment.

63. See I Kennedy, “The doctor, the pill and the fifteen year old girl” in I Kennedy (ed), Treat Me Right (1988), 111-114.

64. See Family Law Act 1975 (Cth) s 61C(1) regarding the concept of “parental responsibility”.

65. J Loughrey, “Medical Information, confidentiality and a child’s right to privacy” (2003) 23 Legal Studies 510.

66. T Bartholomew and S Paxton, “General practitioners’ perspectives re competence and confidentiality in an adolescent with suspected anorexia nervosa: legal and ethical considerations” (2003) 10 Journal of Law and Medicine 308, 314.

67. NSW Commission for Children & Young People, Submission, [13.1]-[13.3], [13.5]; Youth Justice Coalition, Submission, 5; Shopfront Youth Legal Centre, Submission, 11; Doctors Reform Society, Submission, 6; S Siedlecky, Submission, 17-18; Youth Action Policy Association, Submission, 4.

68. Shopfront Youth Legal Centre, Submission, 11; S Siedlecky, Submission, 18; Doctors Reform Society, Submission, 6.

69. Consider Australian Law Reform Commission, For Your Information: Australian Privacy Law and Practice, Report 108 (May 2008).