BEST PRACTICE
Consent and capacity in children and young people Roger Palmer,1 Gareth Gillespie2 1
Department of Medical Services, Medical Protection Society, London, UK 2 Department of Communications, Medical Protection Society, Leeds, UK Correspondence to Dr Roger Palmer, Medical Protection Society, 33 Cavendish Square, London W1G 0PS, UK; [email protected] Received 14 January 2013 Revised 23 August 2013 Accepted 4 September 2013 Published Online First 28 October 2013
To cite: Palmer R, Gillespie G. Arch Dis Child Educ Pract Ed 2014;99:2–7.
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INTRODUCTION The issues surrounding consent and capacity in children and young people can be complex and are usually delicate. This is largely down to the number of considerations one has to make in each case, when assessing a minor’s competence to give consent. The process of making such an assessment depends on the age and maturity of the minor, the minor’s best interests—weighed against the minor’s views and those of the parents (those with parental responsibility)—and the nature of the treatment itself. This article will look at the issues around the assessment of capacity in children and young people, and the role it plays in obtaining valid consent. THE AGE OF CONSENT Autonomy permits that any competent adult can decide on their medical treatment. This includes the absolute right to decline any treatment whatever the potential outcome and for whatever reason he or she wishes, so long as it is an individual choice (ie, without undue influence) and does not adversely impact society (ie, the public health balance). Moreover, that this consent can, and should, be permitted to be withdrawn at any time up until the treatment is provided without a deadline after which refusal is ‘inadmissible’. These freedoms of choice are enshrined in law and protected by the profession who advise their patients on the options, the potential benefits and their consequences. The age at which a person is considered a competent adult, capable of making their own decisions regarding their medical treatment, regardless of its wisdom (assuming there are no other factors affecting their mental capacity to do so), is inconsistent across the UK jurisdictions. In England, Wales and Northern Ireland, this age is 18, while in Scotland it is 16. In England, Wales and Northern
Ireland, however, those aged 16 and 17 are presumed to have the capacity to consent and can be considered ‘competent minors’—the rules for which are set in statute, in section 8 (s.8) of the Family Law Reform Act 1969. Here, any affirmative consent given by the minor to investigation or treatment, that is considered to be in their best interests, cannot be overruled by anyone with parental responsibility; although the Court can, in its capacity as parens patriae. As Lord Donaldson MR (Master of the Rolls) said, “A minor of any age who is ‘Gillick competent’ in the context of particular treatment has the right to consent to that treatment, which again cannot be overridden by those with parental responsibility, but can be overridden by the Court…”1 If the minor withholds consent, however, this decision can be overruled by someone with parental responsibility or, again, the Court, if this decision is deemed to be in the minor’s best interests. CAPACITY IN MINORS It is commonly assumed that children lack capacity to make important decisions for themselves, such tasks being delegated to their parents or legal guardians (who are deemed capable of making sensible decisions in the child’s best interests). However, it is clear that children make increasingly important life-determining decisions as they mature. This is not only limited to schooling and social matters, but to important health related matters (eg, sexual relationships, smoking, recreational drugs), all of which impact on the child’s ongoing and future development. The natural extension of this is that this may also be appropriate with that child’s individual healthcare choices and decisions. In all UK jurisdictions, patients under the age of 16 may or may not have the
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
Best practice capacity to consent to treatment. The test for this is Gillick competence—whether or not they can understand and retain the information regarding what treatment is being proposed.2 A child with such understanding cannot have their consent to treatment overruled by their parents, unless they make a decision to withhold consent and it is clearly detrimental to their well-being. The General Medical Council (GMC) says, in paragraphs 31–33 of its guidance 0–18 Years: Guidance for all Doctors (2007): Parents cannot override the competent consent of a young person to treatment that you consider is in their best interests. But you can rely on parental consent when a child lacks the capacity to consent. In Scotland parents cannot authorise treatment a competent young person has refused. In England, Wales and Northern Ireland, the law on parents overriding young people’s competent refusal is complex. You should seek legal advice if you think treatment is in the best interests of a competent young person who refuses. You must carefully weigh up the harm to the rights of children and young people of overriding their refusal against the benefits of treatment, so that decisions can be taken in their best interests. In these circumstances, you should consider involving other members of the multi-disciplinary team, an independent advocate, or a named or designated doctor for child protection. Legal advice may be helpful in deciding whether you should apply to the court to resolve disputes about best interests that cannot be resolved informally. You should also consider involving these same colleagues before seeking legal advice if parents refuse treatment that is clearly in the best interests of a child or young person who lacks capacity, or if both a young person with capacity and their parents refuse such treatment.
The gravity of the decision to be made might reasonably be expected to impact on the consenting process and the ability of the child to consider the available information. Typically the child is involved, along with their parent(s), and it is uncommon for them to need or desire to make a decision alone. However, this cannot be assumed and the child may well seek, and should expect to receive, confidential medical care (as adults would) in most circumstances —the exceptions, including disclosures, required by law or considered to be in the public interest (such as serious crime, including child abuse). The age at which this might reasonably be expected to be considered varies and will depend upon the child’s maturity. However, from the age of around 12 a child might reasonably be expected to have capacity to make decisions that relate to their medical care, and in Scotland is legally presumed to have acquired this; for instance, in permitting access to their medical records.3
PARENTAL RESPONSIBILITY Unless she lacks capacity herself, a child’s mother automatically has parental responsibility. A father will have parental responsibility if any of the following conditions apply: ▸ He is married to the mother of his child (or was married to her at the time of the child’s birth). ▸ He has made a parental responsibility agreement with the mother. ▸ He has obtained a Court order granting him parental responsibility. ▸ The child was born after 15 April 2002 in Northern Ireland, 1 December 2003 in England or Wales or 4 May 2006 in Scotland and the father is named on the child’s birth certificate.
However, it can be difficult to identify who has parental responsibility where parents have divorced, remarried or are living with new partners. Care should be taken to establish who has parental responsibility, but if uncertainty remains, advice should be sought from a colleague, your employing or contracting body’s legal department or medical defence organisation (MDO). Box 1 lists those individuals who may have parental responsibility. Of particular importance, the Children Act 1989 includes those steps that may be taken to protect a child. This includes a Police Protection Order, which permits the police constable to confer up to 72 h police protection upon a child where there is the risk of significant harm to the child otherwise; although this does not allow parental responsibility to be acquired despite the expectation that the police will act in the best interests of the child concerned.4 The Local Authority, or the police on their behalf, may go on to make an application for an Emergency Protection Order thereafter, and ultimately parental responsibility may be acquired as a consequence (as per s.44). The parents will typically retain parental responsibility, unless removed by a Court or by virtue of adoption (box 1). BEST INTERESTS There may be situations where someone with parental responsibility, typically the parent(s), makes a decision regarding treatment that is considered not to be in the best interests of an incompetent child under the age of 16. In such cases, the Courts may need to intervene —and this can happen in a number of ways. The child may be made a ward of Court, meaning the High Court assumes responsibility for the child’s welfare. The Official Solicitor may be appointed the child’s guardian. In addition, while only one individual with parental responsibility needs to consent to medical intervention on behalf of an incompetent child, parental dispute may also require consideration by, and resolution through, the Courts.5 In these situations, the Court may make a s.8 order instead—the two orders
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
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Best practice Box 1 Those potentially entrusted with Parental Responsibility, as outlined in the respective legislation, particularly the Children Act 198917 and the Adoption and Children Act 2002.18 ▸ Mother ▸ Father, subject to the conditions described in text ▸ A second female parent by virtue of assisted reproduction (artificial/donor insemination or similar through IVF) during a civil partnership (Human Fertilization & Embryology Act 2008) ▸ A step-parent (through subsequent marriage or civil partnership), by virtue of a registered responsibility agreement or parental responsibility order by the Court ▸ A legal guardian (Court appointed guardian or through a special guardianship order; or alternatively by appointment of the parent or an earlier guardian; eg, after death of those with such parental responsibility) ▸ Any other adult granted a residence order (eg, grandparent(s) or cohabiting partner) or special guardianship order by the Court ▸ The Local Authority following a care order, including a protection order (EPO or IPO but not PPO; see text for description) ▸ During adoption, the Local Authority ( placement order), adoption agency during placement (s.25)18, and adoptive parent(s) through eventual adoption order (‘birth’ parents and others, where applicable, now lose parental responsibility – s.46(2)...18) IVF, in vitro fertilisation; EPO, Emergency Protection Order; IPO, Interim Protection Order; PPO, Police Protection Order.
relevant to medical treatment are the Prohibited Steps Order and the Specific Issue Order. In situations where two parents disagree over whether or not their child should undergo a medical procedure a Prohibited Steps Order may be sought. Should one parent take out this order, they can prevent the procedure going ahead by blocking the ability of the other parent to independently consent. The Specific Issue Order deals with any one-off decision regarding medical treatment or educational issue that needs to be made on behalf of a child. Here, the Court has the ability to adjudicate where there is disagreement or discord on a defined matter, either between those with parental responsibility or between parents and the professionals involved (medical or Local Authority), but it does not normally give an overall or prevailing power to any one party. Examples may include non-urgent non-essential treatments, such as the provision of vaccination,6 or be more immediate and complex as has recently been observed the High Court decision regarding the appropriate adjuvant 4
Box 2 Case study 1 N was a 7-year-old boy with a medulloblastoma who underwent resection of the tumour, following which adjuvant chemotherapy and radiotherapy was recommended. His mother did not wish him to receive radiotherapy, by virtue of the potential long-term cognitive and endocrine side effects, stating that she was acting in her child’s best interests asserting this and by having previously absconded with her son to avoid such medical care. Mr Justice Bodey, while recognising the conundrum faced by parents in these most difficult of circumstances, and sympathising with the mother, fell squarely on the side of the greater chance of preserving life stating that “One cannot enjoy even a diminished quality of life if one is not alive.”19 This might be considered at odds with Re T, but here the parents had differing opinions from one another, rather than with the doctors alone. In the modern medicolegal world where mainstream and traditional treatment provides an improved outlook, despite the potential side effects, this now seems to always be considered in the incompetent child’s best interests, particularly where one parent countenances it.
treatment for a young (and therefore incompetent) child with a brain tumour (box 2). There are a number of cases where the Courts have intervened. One is Re T,7 where an 18-month-old child with biliary atresia needed a liver transplant following a failed Kasai operation. The parents withheld consent for the transplant as they felt it was not in their child’s best interests. The Court was asked to intervene and ruled that the parents’ view was unreasonable; however, the Court of Appeal overturned this decision. While seemingly anomalous, this case demonstrates that the prospects of a successful outcome alone is insufficient, and the severity of the treatment proposed (including subsequent need for medical oversight), the social circumstances and parental desires, all impact on the complex decision making that is necessary to determine a child’s individual best interests. Nevertheless, when considering best interests the child’s quality of life is often the critical deciding factor, as it was in the case of Re B.8 Here, a baby born with Down’s syndrome required surgical correction for intestinal obstruction, but the parents refused to consent because they felt being allowed to die was in the child’s best interests. The doctors disagreed and involved the Courts. The baby was made a ward of Court, and the Court consented to the treatment going ahead—a decision based on the fact that a reasonable quality of life was expected for the baby following the procedure. This contrasts with the many cases of perinatal cerebral anoxia considered, perhaps summarised best by the Court of Appeal in Re J.9 A 5-month-old,
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
Best practice ex-27-week, infant developed numerous serious consequences of prematurity, suffering life-limiting and profound brain damage as a result requiring episodic (cardio)pulmonary resuscitation and ventilation. The Official Solicitor appealed the Court’s decision that intensive care could be withheld in the event of a future collapse. Dismissing the appeal, Lord Justice Taylor stated “...there must be extreme cases in which the Court is entitled to say: ‘The life which this treatment would prolong would be so cruel as to be intolerable.’... ...In those circumstances, without there being any question of deliberately ending the life or shortening it, I consider the Court is entitled in the best interests of the child to say that deliberate steps should not be taken artificially to prolong its miserable life span.”; thereby authorising active palliation and a dignified demise when a decline in health interjected. Subsequent judgements reaffirm this approach for such extreme conditions irrespective of whether the parents wish further invasive care to be provided.10 THE CAPACITY TEST As already mentioned, the test for assessing the capacity of a child to consent to medical treatment is Gillick competence. This is different from the Fraser Guidelines, which deals narrowly with the provision of contraceptive advice to girls11 and was summarised by Lord Fraser as part of the wider Gillick judgement.2 An interesting, and important, reaffirmation of this test took place in 2006, in the case of R (Axon) v Secretary of State for Health, which unlike the Gillick case involved actual medical treatment—in this case a termination of pregnancy. The parent in this case claimed that any advice given to someone aged under 16 regarding sexual matters, without parental consent, was an interference with the human rights of the parent, under article 8 of the European Convention on Human Rights. The judgement found that “A parent would not retain a right to parental authority under art 8 of the European Convention on Human Rights relating to a medical decision where the young person concerned had understood the advice provided by the medical professional and its implications.” Because the capacity test for children is grounded in common law and is not statutory, it is up to the doctor to determine whether the child is competent to give valid consent to treatment. This determination means the doctor must decide whether the child has the maturity and intelligence to understand fully the nature of the proposed treatment, available alternative options, the benefits of such and all the risks involved (box 3). Children who do not meet the requirements of Gillick competence cannot give or withhold consent, meaning that those with parental responsibility must make these decisions on the child’s behalf. Again, this comes with the caveat that the child must not come to
Box 3 Case study 2 An interesting and unexpected case was witnessed in 2008 when H a 13-year-old girl refused a heart transplant. She did this on the grounds that the preceding years of treatment for leukaemia had left her drained and debilitated. She told doctors that she wished to avoid another lengthy hospital stay, preferring to accept her imminent death and to spend her last days away from hospital, surrounded by family and friends. Her decision was ultimately accepted by the healthcare team and social services, without being considered by the Courts, because it was considered that she demonstrated the necessary maturity and understanding to make the decision an informed one. Despite this, with the prevailing view on the sanctity of life and the Court’s previous resolve to authorise reasonable treatments, including heart transplantation in competent minors,20 why was there no intervention on the grounds of preserving her best interests? It may be that this case was exceptional, and in the context of the extent of the suffering experienced—battling leukaemia since the age of 4—that it was considered her decision to reject the transplant and therefore permit her life to come to a dignified end was, in fact, in her best interests. Whatever the rationale, it is interesting to note that she later changed her mind and opted for the heart transplant—raising another question: how susceptible are children, competent as they are to make such decisions, to fluctuating views?
harm if those with parental responsibility withhold consent to treatment; should the decision to withhold not be in the child’s best interests, then as long as the treatment is non-urgent, the doctor (through their Trust or, where appropriate, the Local Authority) can request a Specific Issue Order under the Children Act 1989. In emergency situations, where either those with parental responsibility have withheld consent or are they are not available to consent, the best interests of the child must again take priority. The doctor should take whatever action is necessary to deal with the particular emergency although, where appropriate, it is also advisable to discuss the situation with another senior colleague and the legal services department and/or with your MDO. Irrespective of the route taken, it is essential that full documentation is kept of all decisions made, including the reasons behind them. CONSENT You should involve children and young people as much as possible in decisions about their care, even when they are not able to make decisions on their own.12
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
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Best practice Once issues surrounding capacity have been addressed, valid consent must be obtained from a child over 16 years of age, from the (Gillick) competent minor, or alternatively from those with parental responsibility. In any event, the consent process requires the same approach. Before supplying the patient with the information necessary for them to make an informed decision, doctors should be clear about whether they require the patient’s agreement to treatment (affirmative consent) or their explicit opposition where consent would otherwise be assumed (negative consent). Information is a key part of the consent process and the GMC provides a list of details that patients ought to be informed about.13 The process is not necessarily conducted in one go and should lean more towards exploring the patient’s understanding, beliefs and concerns, discovering the aspects of the treatment that are most significant to them. As with adult patients, doctors should take care not to make assumptions about a competent child’s level of understanding nor about any restrictions on the nature of the information (s)he will want to hear. In some cases, a child may not want to hear aspects of the details of their condition or treatment; such a view should be noted in the patient’s records, but as the GMC expect “…you must still give them the information they need in order to give their consent to a proposed investigation or treatment.”14 The only justification for withholding information from a patient is if there are good grounds for believing that it would cause serious physical or mental harm to the patient. Such circumstances are rare, although conceivably more common in younger and more immature children, where parental input is often invaluable. Nevertheless when they do occur, it is important to document the decision to withhold and the rationale behind it. However, if treatment is required urgently, it may not be possible to provide the full range of recommended information; doctors must do their best to give a broad outline of what is being proposed. Consent must also be given freely; otherwise the patient can claim coercion, which would invalidate the consent. In many situations, a child may find it difficult to say ‘no’ to their doctor, when they are proposing treatment; this is especially the case if a doctor were to make assumptions that the patient would have no objection to treatment. Parents, other relatives and friends can also exercise considerable influence in a child’s decision making, and this might develop into undue pressure. If concerned, check that the patient has truly considered all the options, has no additional anxieties or misgivings and is aware that they have a right to refuse the proposed procedure. The decisions made thereafter will depend on the treatment recommended, the urgency of the situation and the issues that have presented themselves. 6
Similarly, withdrawing consent for continuing treatment is possible for competent children and, to an extent, children who lack capacity. In the latter case, this is applicable in situations where, perhaps during a procedure, the child is in pain or discomfort—treatment can be stopped only if it is safe to do so, and the doctor should explain the consequences of not proceeding further, taking care not to imply coercion. In the former, a doctor should stop treatment or continuing care (if safe to do so) whenever the patient indicates this wish. SUMMARY In any discussion regarding the medical care to be provided to a child, it is essential to provide complete and clear information that is context and, where necessary, age appropriate. While adult decision making is seemingly free of restriction, for children it is still acknowledged that “The graver the consequences of the decision, the commensurately greater the level of competence is required to take the decision.”15 In young children and children who lack capacity then those with parental responsibility are charged with the responsibility to make informed decisions on the child’s behalf. For the vast majority of interactions this will accord with the prevailing view on choices that sit within those that might be considered in the best interests of the child concerned, which will be both family and decision specific. However, on occasions there will be parental dispute or the decision will seem to be sufficiently anomalous that it might be contrary to the child’s best interests. Meanwhile, the competent minor is provided the right of increasing self-determination and can, with greater maturity, weigh up (more) complex medical decisions for his/her own care. Many potential decisions will be acceded to, viewed as a reasonable approach for an individual in that particular situation. While the child’s parents are likely to be intimately involved in supporting their child in reaching a decision, or in providing consent on his/her behalf, this is no longer essential even though parental input is encouraged. Ultimately, a competent minor can provide affirmative, informed consent. Irrespective of whether a competent child’s decision or parental expression on behalf of their child who lacks capacity, if this declines medical intervention considered in their best interests, where possible, and time allowing, this might be resolved through further discussion, greater explanation, wider professional (ie, social services, other specialties or therapists) or family involvement (subject to consent) and time. In the urgent situation or should an impasse be reached, then an application to the Court may be necessary. The child’s welfare, or best interests, will prevail; although this may require reviewing from numerous perspectives, particularly for the younger, incompetent child, where the issues may be less pressing, non-essential or urgent and
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
Best practice life-preserving. For the competent minor, the issues more likely relate to urgent life-preserving interventions, and here the Courts will typically authorise treatment to ensure the competent minor reaches the age of majority, even though their reasons will be carefully reviewed, save for distressing treatment that has a reduced likelihood of being successful. Where requests for medical treatments not deemed to be in the child’s best interests are received, the doctor is not obliged to provide the intervention sought;16 although again this requires exploration with the patient and/or family and might indicate an underlying safeguarding concern. The initial principles for approaching these situations are similar to treatment refusal listed above. Decisions of this magnitude are rare and may adversely affect the therapeutic relationship, so are
Key Points ▸ All children and young people should be involved in the discussions and decisions regarding their healthcare, appropriate to their understanding and maturity. ▸ Where a child lacks capacity, and the intervention is considered to be in the child’s best interests, consent from one person with parental responsibility is sufficient in most instances (exceptions include a disputed vaccination and circumcision, where the consent of both parents is required). ▸ Competent minors typically will, and should be encouraged to, involve parents in their decision making and may request authority for treatment is granted by a parent. ▸ However, a competent minor of any age may consent to investigation or treatment considered to be in their best interests. ▸ The consent of a competent minor over the age of 16 cannot be overruled by someone with parental responsibility, only by the Court. ▸ Any child may withdraw consent at any time but this may, depending on the situation, be overruled by someone with parental responsibility (if less than 16) or by the Court (age independent). ▸ In an emergency, immediate necessary treatment should be provided in the best interests of the child. ▸ Resolution sought through the Court might be necessary if a competent minor refuses life-preserving treatment, where a parental dispute arises and which cannot be resolved informally, or where the decision made by those with parental responsibility is considered contrary to the best interests of an incompetent child. ▸ If in doubt seek advice from a senior colleague, named/designated doctor for child protection, your organisation’s legal services department and/or MDO.
not taken lightly and require expert legal input along the way. Advice is available from experienced colleagues, your employing or contracting body’s legal department and/or your MDO. As part of this, it is essential to ensure that all decisions and discussions are fully documented and justify the direction taken, should this be challenged in future. Ultimately, the child’s welfare is paramount, the first and final consideration of every parent, doctor and (where necessary) the Court. Correction notice In box 1 of this paper the abbreviations were not defined, this omission has now been rectified. The abbreviations are as follows: IVF, in vitro fertilisation; EPO, Emergency Protection Order; IPO, Interim Protection Order; PPO, Police Protection Order. Contributors Both RP and GG contributed to the research and writing of this article. A first draft by GG was amended and appended by RP, who applied his medicolegal training and expertise to the work. Dr Stephanie Bown, the Director of Communications and Policy at MPS, provided final approval to this article and controlled the decision to publish. Dr Bown is the guarantor. Both RP and GG reflected on the editorial board and reviewers’ comments and approved the revised article they have prepared. Competing interests Both authors are employed by MPS (a MDO). Provenance and peer review Commissioned; externally peer reviewed.
REFERENCES 1 Re W (a minor) (medical treatment) [1992] 4 All ER 627. 2 Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402. 3 GMC, 0–18 Years: Guidance for all Doctors (2007), paragraphs 42–53. 4 The Children Act 1989. Section 46. http://www.legislation.gov. uk/ukpga/1989/41/section/46 (accessed 19 Aug 2013). 5 GMC, 0–18 Years: Guidance for all Doctors (2007), paragraph 27. 6 Re C (welfare of child: immunisation) [2003] 2 FLR 1095. 7 Re T (a minor) (wardship: medical treatment) [1997] 1 WLR 242 CA. 8 Re B (a minor) (wardship: medical treatment) [1981] 1 WLR 1421. 9 Re: J (a minor)(wardship: medical treatment) [1990] 3 All ER 930. 10 Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554. 11 Wheeler R. Gillick or Fraser? A plea for consistency over competence in children. BMJ 2006;332:807. 12 GMC, 0–18 Years: Guidance for all Doctors (2007), paragraph 23. 13 GMC, Consent: Patients and Doctors Making Decisions Together (2008), paragraph 9. 14 GMC, Consent: Patients and Doctors Making Decisions Together (2008), paragraph 14. 15 Re: MB (medical treatment) [1997] 2 FLR 426. 16 GMC, Consent: Patients and Doctors Making Decisions Together (2008), paragraph 5(d). 17 http://www.legislation.gov.uk/ukpga/1989/41/contents (accessed 19 Aug 2013). 18 http://www.legislation.gov.uk/ukpga/2002/38/contents (accessed 19 August 2013). 19 An NHS Trust v SR [2012] EWHC 3842 (Fam). 20 Re M (medical treatment: consent) [1999] 2 FLR 1097.
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
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Consent and capacity in children and young people Roger Palmer,1 Gareth Gillespie2 1
Department of Medical Services, Medical Protection Society, London, UK 2 Department of Communications, Medical Protection Society, Leeds, UK Correspondence to Dr Roger Palmer, Medical Protection Society, 33 Cavendish Square, London W1G 0PS, UK; [email protected] Received 14 January 2013 Revised 23 August 2013 Accepted 4 September 2013 Published Online First 28 October 2013
To cite: Palmer R, Gillespie G. Arch Dis Child Educ Pract Ed 2014;99:2–7.
2
INTRODUCTION The issues surrounding consent and capacity in children and young people can be complex and are usually delicate. This is largely down to the number of considerations one has to make in each case, when assessing a minor’s competence to give consent. The process of making such an assessment depends on the age and maturity of the minor, the minor’s best interests—weighed against the minor’s views and those of the parents (those with parental responsibility)—and the nature of the treatment itself. This article will look at the issues around the assessment of capacity in children and young people, and the role it plays in obtaining valid consent. THE AGE OF CONSENT Autonomy permits that any competent adult can decide on their medical treatment. This includes the absolute right to decline any treatment whatever the potential outcome and for whatever reason he or she wishes, so long as it is an individual choice (ie, without undue influence) and does not adversely impact society (ie, the public health balance). Moreover, that this consent can, and should, be permitted to be withdrawn at any time up until the treatment is provided without a deadline after which refusal is ‘inadmissible’. These freedoms of choice are enshrined in law and protected by the profession who advise their patients on the options, the potential benefits and their consequences. The age at which a person is considered a competent adult, capable of making their own decisions regarding their medical treatment, regardless of its wisdom (assuming there are no other factors affecting their mental capacity to do so), is inconsistent across the UK jurisdictions. In England, Wales and Northern Ireland, this age is 18, while in Scotland it is 16. In England, Wales and Northern
Ireland, however, those aged 16 and 17 are presumed to have the capacity to consent and can be considered ‘competent minors’—the rules for which are set in statute, in section 8 (s.8) of the Family Law Reform Act 1969. Here, any affirmative consent given by the minor to investigation or treatment, that is considered to be in their best interests, cannot be overruled by anyone with parental responsibility; although the Court can, in its capacity as parens patriae. As Lord Donaldson MR (Master of the Rolls) said, “A minor of any age who is ‘Gillick competent’ in the context of particular treatment has the right to consent to that treatment, which again cannot be overridden by those with parental responsibility, but can be overridden by the Court…”1 If the minor withholds consent, however, this decision can be overruled by someone with parental responsibility or, again, the Court, if this decision is deemed to be in the minor’s best interests. CAPACITY IN MINORS It is commonly assumed that children lack capacity to make important decisions for themselves, such tasks being delegated to their parents or legal guardians (who are deemed capable of making sensible decisions in the child’s best interests). However, it is clear that children make increasingly important life-determining decisions as they mature. This is not only limited to schooling and social matters, but to important health related matters (eg, sexual relationships, smoking, recreational drugs), all of which impact on the child’s ongoing and future development. The natural extension of this is that this may also be appropriate with that child’s individual healthcare choices and decisions. In all UK jurisdictions, patients under the age of 16 may or may not have the
Palmer R, et al. Arch Dis Child Educ Pract Ed 2014;99:2–7. doi:10.1136/archdischild-2013-303675
Best practice capacity to consent to treatment. The test for this is Gillick competence—whether or not they can understand and retain the information regarding what treatment is being proposed.2 A child with such understanding cannot have their consent to treatment overruled by their parents, unless they make a decision to withhold consent and it is clearly detrimental to their well-being. The General Medical Council (GMC) says, in paragraphs 31–33 of its guidance 0–18 Years: Guidance for all Doctors (2007): Parents cannot override the competent consent of a young person to treatment that you consider is in their best interests. But you can rely on parental consent when a child lacks the capacity to consent. In Scotland parents cannot authorise treatment a competent young person has refused. In England, Wales and Northern Ireland, the law on parents overriding young people’s competent refusal is complex. You should seek legal advice if you think treatment is in the best interests of a competent young person who refuses. You must carefully weigh up the harm to the rights of children and young people of overriding their refusal against the benefits of treatment, so that decisions can be taken in their best interests. In these circumstances, you should consider involving other members of the multi-disciplinary team, an independent advocate, or a named or designated doctor for child protection. Legal advice may be helpful in deciding whether you should apply to the court to resolve disputes about best interests that cannot be resolved informally. You should also consider involving these same colleagues before seeking legal advice if parents refuse treatment that is clearly in the best interests of a child or young person who lacks capacity, or if both a young person with capacity and their parents refuse such treatment.
The gravity of the decision to be made might reasonably be expected to impact on the consenting process and the ability of the child to consider the available information. Typically the child is involved, along with their parent(s), and it is uncommon for them to need or desire to make a decision alone. However, this cannot be assumed and the child may well seek, and should expect to receive, confidential medical care (as adults would) in most circumstances —the exceptions, including disclosures, required by law or considered to be in the public interest (such as serious crime, including child abuse). The age at which this might reasonably be expected to be considered varies and will depend upon the child’s maturity. However, from the age of around 12 a child might reasonably be expected to have capacity to make decisions that relate to their medical care, and in Scotland is legally presumed to have acquired this; for instance, in permitting access to their medical records.3
PARENTAL RESPONSIBILITY Unless she lacks capacity herself, a child’s mother automatically has parental responsibility. A father will have parental responsibility if any of the following conditions apply: ▸ He is married to the mother of his child (or was married to her at the time of the child’s birth). ▸ He has made a parental responsibility agreement with the mother. ▸ He has obtained a Court order granting him parental responsibility. ▸ The child was born after 15 April 2002 in Northern Ireland, 1 December 2003 in England or Wales or 4 May 2006 in Scotland and the father is named on the child’s birth certificate.
However, it can be difficult to identify who has parental responsibility where parents have divorced, remarried or are living with new partners. Care should be taken to establish who has parental responsibility, but if uncertainty remains, advice should be sought from a colleague, your employing or contracting body’s legal department or medical defence organisation (MDO). Box 1 lists those individuals who may have parental responsibility. Of particular importance, the Children Act 1989 includes those steps that may be taken to protect a child. This includes a Police Protection Order, which permits the police constable to confer up to 72 h police protection upon a child where there is the risk of significant harm to the child otherwise; although this does not allow parental responsibility to be acquired despite the expectation that the police will act in the best interests of the child concerned.4 The Local Authority, or the police on their behalf, may go on to make an application for an Emergency Protection Order thereafter, and ultimately parental responsibility may be acquired as a consequence (as per s.44). The parents will typically retain parental responsibility, unless removed by a Court or by virtue of adoption (box 1). BEST INTERESTS There may be situations where someone with parental responsibility, typically the parent(s), makes a decision regarding treatment that is considered not to be in the best interests of an incompetent child under the age of 16. In such cases, the Courts may need to intervene —and this can happen in a number of ways. The child may be made a ward of Court, meaning the High Court assumes responsibility for the child’s welfare. The Official Solicitor may be appointed the child’s guardian. In addition, while only one individual with parental responsibility needs to consent to medical intervention on behalf of an incompetent child, parental dispute may also require consideration by, and resolution through, the Courts.5 In these situations, the Court may make a s.8 order instead—the two orders
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Best practice Box 1 Those potentially entrusted with Parental Responsibility, as outlined in the respective legislation, particularly the Children Act 198917 and the Adoption and Children Act 2002.18 ▸ Mother ▸ Father, subject to the conditions described in text ▸ A second female parent by virtue of assisted reproduction (artificial/donor insemination or similar through IVF) during a civil partnership (Human Fertilization & Embryology Act 2008) ▸ A step-parent (through subsequent marriage or civil partnership), by virtue of a registered responsibility agreement or parental responsibility order by the Court ▸ A legal guardian (Court appointed guardian or through a special guardianship order; or alternatively by appointment of the parent or an earlier guardian; eg, after death of those with such parental responsibility) ▸ Any other adult granted a residence order (eg, grandparent(s) or cohabiting partner) or special guardianship order by the Court ▸ The Local Authority following a care order, including a protection order (EPO or IPO but not PPO; see text for description) ▸ During adoption, the Local Authority ( placement order), adoption agency during placement (s.25)18, and adoptive parent(s) through eventual adoption order (‘birth’ parents and others, where applicable, now lose parental responsibility – s.46(2)...18) IVF, in vitro fertilisation; EPO, Emergency Protection Order; IPO, Interim Protection Order; PPO, Police Protection Order.
relevant to medical treatment are the Prohibited Steps Order and the Specific Issue Order. In situations where two parents disagree over whether or not their child should undergo a medical procedure a Prohibited Steps Order may be sought. Should one parent take out this order, they can prevent the procedure going ahead by blocking the ability of the other parent to independently consent. The Specific Issue Order deals with any one-off decision regarding medical treatment or educational issue that needs to be made on behalf of a child. Here, the Court has the ability to adjudicate where there is disagreement or discord on a defined matter, either between those with parental responsibility or between parents and the professionals involved (medical or Local Authority), but it does not normally give an overall or prevailing power to any one party. Examples may include non-urgent non-essential treatments, such as the provision of vaccination,6 or be more immediate and complex as has recently been observed the High Court decision regarding the appropriate adjuvant 4
Box 2 Case study 1 N was a 7-year-old boy with a medulloblastoma who underwent resection of the tumour, following which adjuvant chemotherapy and radiotherapy was recommended. His mother did not wish him to receive radiotherapy, by virtue of the potential long-term cognitive and endocrine side effects, stating that she was acting in her child’s best interests asserting this and by having previously absconded with her son to avoid such medical care. Mr Justice Bodey, while recognising the conundrum faced by parents in these most difficult of circumstances, and sympathising with the mother, fell squarely on the side of the greater chance of preserving life stating that “One cannot enjoy even a diminished quality of life if one is not alive.”19 This might be considered at odds with Re T, but here the parents had differing opinions from one another, rather than with the doctors alone. In the modern medicolegal world where mainstream and traditional treatment provides an improved outlook, despite the potential side effects, this now seems to always be considered in the incompetent child’s best interests, particularly where one parent countenances it.
treatment for a young (and therefore incompetent) child with a brain tumour (box 2). There are a number of cases where the Courts have intervened. One is Re T,7 where an 18-month-old child with biliary atresia needed a liver transplant following a failed Kasai operation. The parents withheld consent for the transplant as they felt it was not in their child’s best interests. The Court was asked to intervene and ruled that the parents’ view was unreasonable; however, the Court of Appeal overturned this decision. While seemingly anomalous, this case demonstrates that the prospects of a successful outcome alone is insufficient, and the severity of the treatment proposed (including subsequent need for medical oversight), the social circumstances and parental desires, all impact on the complex decision making that is necessary to determine a child’s individual best interests. Nevertheless, when considering best interests the child’s quality of life is often the critical deciding factor, as it was in the case of Re B.8 Here, a baby born with Down’s syndrome required surgical correction for intestinal obstruction, but the parents refused to consent because they felt being allowed to die was in the child’s best interests. The doctors disagreed and involved the Courts. The baby was made a ward of Court, and the Court consented to the treatment going ahead—a decision based on the fact that a reasonable quality of life was expected for the baby following the procedure. This contrasts with the many cases of perinatal cerebral anoxia considered, perhaps summarised best by the Court of Appeal in Re J.9 A 5-month-old,
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Best practice ex-27-week, infant developed numerous serious consequences of prematurity, suffering life-limiting and profound brain damage as a result requiring episodic (cardio)pulmonary resuscitation and ventilation. The Official Solicitor appealed the Court’s decision that intensive care could be withheld in the event of a future collapse. Dismissing the appeal, Lord Justice Taylor stated “...there must be extreme cases in which the Court is entitled to say: ‘The life which this treatment would prolong would be so cruel as to be intolerable.’... ...In those circumstances, without there being any question of deliberately ending the life or shortening it, I consider the Court is entitled in the best interests of the child to say that deliberate steps should not be taken artificially to prolong its miserable life span.”; thereby authorising active palliation and a dignified demise when a decline in health interjected. Subsequent judgements reaffirm this approach for such extreme conditions irrespective of whether the parents wish further invasive care to be provided.10 THE CAPACITY TEST As already mentioned, the test for assessing the capacity of a child to consent to medical treatment is Gillick competence. This is different from the Fraser Guidelines, which deals narrowly with the provision of contraceptive advice to girls11 and was summarised by Lord Fraser as part of the wider Gillick judgement.2 An interesting, and important, reaffirmation of this test took place in 2006, in the case of R (Axon) v Secretary of State for Health, which unlike the Gillick case involved actual medical treatment—in this case a termination of pregnancy. The parent in this case claimed that any advice given to someone aged under 16 regarding sexual matters, without parental consent, was an interference with the human rights of the parent, under article 8 of the European Convention on Human Rights. The judgement found that “A parent would not retain a right to parental authority under art 8 of the European Convention on Human Rights relating to a medical decision where the young person concerned had understood the advice provided by the medical professional and its implications.” Because the capacity test for children is grounded in common law and is not statutory, it is up to the doctor to determine whether the child is competent to give valid consent to treatment. This determination means the doctor must decide whether the child has the maturity and intelligence to understand fully the nature of the proposed treatment, available alternative options, the benefits of such and all the risks involved (box 3). Children who do not meet the requirements of Gillick competence cannot give or withhold consent, meaning that those with parental responsibility must make these decisions on the child’s behalf. Again, this comes with the caveat that the child must not come to
Box 3 Case study 2 An interesting and unexpected case was witnessed in 2008 when H a 13-year-old girl refused a heart transplant. She did this on the grounds that the preceding years of treatment for leukaemia had left her drained and debilitated. She told doctors that she wished to avoid another lengthy hospital stay, preferring to accept her imminent death and to spend her last days away from hospital, surrounded by family and friends. Her decision was ultimately accepted by the healthcare team and social services, without being considered by the Courts, because it was considered that she demonstrated the necessary maturity and understanding to make the decision an informed one. Despite this, with the prevailing view on the sanctity of life and the Court’s previous resolve to authorise reasonable treatments, including heart transplantation in competent minors,20 why was there no intervention on the grounds of preserving her best interests? It may be that this case was exceptional, and in the context of the extent of the suffering experienced—battling leukaemia since the age of 4—that it was considered her decision to reject the transplant and therefore permit her life to come to a dignified end was, in fact, in her best interests. Whatever the rationale, it is interesting to note that she later changed her mind and opted for the heart transplant—raising another question: how susceptible are children, competent as they are to make such decisions, to fluctuating views?
harm if those with parental responsibility withhold consent to treatment; should the decision to withhold not be in the child’s best interests, then as long as the treatment is non-urgent, the doctor (through their Trust or, where appropriate, the Local Authority) can request a Specific Issue Order under the Children Act 1989. In emergency situations, where either those with parental responsibility have withheld consent or are they are not available to consent, the best interests of the child must again take priority. The doctor should take whatever action is necessary to deal with the particular emergency although, where appropriate, it is also advisable to discuss the situation with another senior colleague and the legal services department and/or with your MDO. Irrespective of the route taken, it is essential that full documentation is kept of all decisions made, including the reasons behind them. CONSENT You should involve children and young people as much as possible in decisions about their care, even when they are not able to make decisions on their own.12
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Best practice Once issues surrounding capacity have been addressed, valid consent must be obtained from a child over 16 years of age, from the (Gillick) competent minor, or alternatively from those with parental responsibility. In any event, the consent process requires the same approach. Before supplying the patient with the information necessary for them to make an informed decision, doctors should be clear about whether they require the patient’s agreement to treatment (affirmative consent) or their explicit opposition where consent would otherwise be assumed (negative consent). Information is a key part of the consent process and the GMC provides a list of details that patients ought to be informed about.13 The process is not necessarily conducted in one go and should lean more towards exploring the patient’s understanding, beliefs and concerns, discovering the aspects of the treatment that are most significant to them. As with adult patients, doctors should take care not to make assumptions about a competent child’s level of understanding nor about any restrictions on the nature of the information (s)he will want to hear. In some cases, a child may not want to hear aspects of the details of their condition or treatment; such a view should be noted in the patient’s records, but as the GMC expect “…you must still give them the information they need in order to give their consent to a proposed investigation or treatment.”14 The only justification for withholding information from a patient is if there are good grounds for believing that it would cause serious physical or mental harm to the patient. Such circumstances are rare, although conceivably more common in younger and more immature children, where parental input is often invaluable. Nevertheless when they do occur, it is important to document the decision to withhold and the rationale behind it. However, if treatment is required urgently, it may not be possible to provide the full range of recommended information; doctors must do their best to give a broad outline of what is being proposed. Consent must also be given freely; otherwise the patient can claim coercion, which would invalidate the consent. In many situations, a child may find it difficult to say ‘no’ to their doctor, when they are proposing treatment; this is especially the case if a doctor were to make assumptions that the patient would have no objection to treatment. Parents, other relatives and friends can also exercise considerable influence in a child’s decision making, and this might develop into undue pressure. If concerned, check that the patient has truly considered all the options, has no additional anxieties or misgivings and is aware that they have a right to refuse the proposed procedure. The decisions made thereafter will depend on the treatment recommended, the urgency of the situation and the issues that have presented themselves. 6
Similarly, withdrawing consent for continuing treatment is possible for competent children and, to an extent, children who lack capacity. In the latter case, this is applicable in situations where, perhaps during a procedure, the child is in pain or discomfort—treatment can be stopped only if it is safe to do so, and the doctor should explain the consequences of not proceeding further, taking care not to imply coercion. In the former, a doctor should stop treatment or continuing care (if safe to do so) whenever the patient indicates this wish. SUMMARY In any discussion regarding the medical care to be provided to a child, it is essential to provide complete and clear information that is context and, where necessary, age appropriate. While adult decision making is seemingly free of restriction, for children it is still acknowledged that “The graver the consequences of the decision, the commensurately greater the level of competence is required to take the decision.”15 In young children and children who lack capacity then those with parental responsibility are charged with the responsibility to make informed decisions on the child’s behalf. For the vast majority of interactions this will accord with the prevailing view on choices that sit within those that might be considered in the best interests of the child concerned, which will be both family and decision specific. However, on occasions there will be parental dispute or the decision will seem to be sufficiently anomalous that it might be contrary to the child’s best interests. Meanwhile, the competent minor is provided the right of increasing self-determination and can, with greater maturity, weigh up (more) complex medical decisions for his/her own care. Many potential decisions will be acceded to, viewed as a reasonable approach for an individual in that particular situation. While the child’s parents are likely to be intimately involved in supporting their child in reaching a decision, or in providing consent on his/her behalf, this is no longer essential even though parental input is encouraged. Ultimately, a competent minor can provide affirmative, informed consent. Irrespective of whether a competent child’s decision or parental expression on behalf of their child who lacks capacity, if this declines medical intervention considered in their best interests, where possible, and time allowing, this might be resolved through further discussion, greater explanation, wider professional (ie, social services, other specialties or therapists) or family involvement (subject to consent) and time. In the urgent situation or should an impasse be reached, then an application to the Court may be necessary. The child’s welfare, or best interests, will prevail; although this may require reviewing from numerous perspectives, particularly for the younger, incompetent child, where the issues may be less pressing, non-essential or urgent and
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Best practice life-preserving. For the competent minor, the issues more likely relate to urgent life-preserving interventions, and here the Courts will typically authorise treatment to ensure the competent minor reaches the age of majority, even though their reasons will be carefully reviewed, save for distressing treatment that has a reduced likelihood of being successful. Where requests for medical treatments not deemed to be in the child’s best interests are received, the doctor is not obliged to provide the intervention sought;16 although again this requires exploration with the patient and/or family and might indicate an underlying safeguarding concern. The initial principles for approaching these situations are similar to treatment refusal listed above. Decisions of this magnitude are rare and may adversely affect the therapeutic relationship, so are
Key Points ▸ All children and young people should be involved in the discussions and decisions regarding their healthcare, appropriate to their understanding and maturity. ▸ Where a child lacks capacity, and the intervention is considered to be in the child’s best interests, consent from one person with parental responsibility is sufficient in most instances (exceptions include a disputed vaccination and circumcision, where the consent of both parents is required). ▸ Competent minors typically will, and should be encouraged to, involve parents in their decision making and may request authority for treatment is granted by a parent. ▸ However, a competent minor of any age may consent to investigation or treatment considered to be in their best interests. ▸ The consent of a competent minor over the age of 16 cannot be overruled by someone with parental responsibility, only by the Court. ▸ Any child may withdraw consent at any time but this may, depending on the situation, be overruled by someone with parental responsibility (if less than 16) or by the Court (age independent). ▸ In an emergency, immediate necessary treatment should be provided in the best interests of the child. ▸ Resolution sought through the Court might be necessary if a competent minor refuses life-preserving treatment, where a parental dispute arises and which cannot be resolved informally, or where the decision made by those with parental responsibility is considered contrary to the best interests of an incompetent child. ▸ If in doubt seek advice from a senior colleague, named/designated doctor for child protection, your organisation’s legal services department and/or MDO.
not taken lightly and require expert legal input along the way. Advice is available from experienced colleagues, your employing or contracting body’s legal department and/or your MDO. As part of this, it is essential to ensure that all decisions and discussions are fully documented and justify the direction taken, should this be challenged in future. Ultimately, the child’s welfare is paramount, the first and final consideration of every parent, doctor and (where necessary) the Court. Correction notice In box 1 of this paper the abbreviations were not defined, this omission has now been rectified. The abbreviations are as follows: IVF, in vitro fertilisation; EPO, Emergency Protection Order; IPO, Interim Protection Order; PPO, Police Protection Order. Contributors Both RP and GG contributed to the research and writing of this article. A first draft by GG was amended and appended by RP, who applied his medicolegal training and expertise to the work. Dr Stephanie Bown, the Director of Communications and Policy at MPS, provided final approval to this article and controlled the decision to publish. Dr Bown is the guarantor. Both RP and GG reflected on the editorial board and reviewers’ comments and approved the revised article they have prepared. Competing interests Both authors are employed by MPS (a MDO). Provenance and peer review Commissioned; externally peer reviewed.
REFERENCES 1 Re W (a minor) (medical treatment) [1992] 4 All ER 627. 2 Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402. 3 GMC, 0–18 Years: Guidance for all Doctors (2007), paragraphs 42–53. 4 The Children Act 1989. Section 46. http://www.legislation.gov. uk/ukpga/1989/41/section/46 (accessed 19 Aug 2013). 5 GMC, 0–18 Years: Guidance for all Doctors (2007), paragraph 27. 6 Re C (welfare of child: immunisation) [2003] 2 FLR 1095. 7 Re T (a minor) (wardship: medical treatment) [1997] 1 WLR 242 CA. 8 Re B (a minor) (wardship: medical treatment) [1981] 1 WLR 1421. 9 Re: J (a minor)(wardship: medical treatment) [1990] 3 All ER 930. 10 Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554. 11 Wheeler R. Gillick or Fraser? A plea for consistency over competence in children. BMJ 2006;332:807. 12 GMC, 0–18 Years: Guidance for all Doctors (2007), paragraph 23. 13 GMC, Consent: Patients and Doctors Making Decisions Together (2008), paragraph 9. 14 GMC, Consent: Patients and Doctors Making Decisions Together (2008), paragraph 14. 15 Re: MB (medical treatment) [1997] 2 FLR 426. 16 GMC, Consent: Patients and Doctors Making Decisions Together (2008), paragraph 5(d). 17 http://www.legislation.gov.uk/ukpga/1989/41/contents (accessed 19 Aug 2013). 18 http://www.legislation.gov.uk/ukpga/2002/38/contents (accessed 19 August 2013). 19 An NHS Trust v SR [2012] EWHC 3842 (Fam). 20 Re M (medical treatment: consent) [1999] 2 FLR 1097.
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