Refusal of heart transplant by a 15 year old

1. ‘Consent and the Minor’Dr. Martin DyarMedline Ethics25th March 2008, 11amSt. James’s Hospital

2. “I would like to see the age limits completely scrapped, and maturity brought in. As you grow up your age has a stereotype. I'm trying to escape from that stereotype."-- Robin, aged 13 - quoted in Children's Consent to Surgery. Priscilla Alderson

3. Refusal of heart transplant by a 15 year old • I understand what a heart transplant means, procedure explained … checkups … tablets for the rest of your life. I feel depressed about that. I am only 15 and don’t want to take tablets for the rest of my life … I don’t want to die. It’s hard to take it all in … If I had children … I would not let them die … I don’t want to die, but I would rather die than have the transplant … I would feel different with someone else’s heart, that’s a good enough reason not to have a heart transplant, even if it saved my life. - Re M (child: refusal of medical treatment) 1999 • ‘There will always be children who possess greater intellect and understanding than some adults’ (Hunter, 2007)

4. Consent is fundamental • All medical treatment and research is effected by the principle of consent • Ethico-legal questions emerge immediately when an examination, treatment or operation, takes place without valid consent: autonomy, non-maleficence, bodily integrity, privacy, respect • Cordozo: ‘Every human being of adult years and sound mind has a right to determine what shall be done with his own body and a surgeon who performs an operation without his patient’s consent commits an assault, for which he is liable in damages’

5. Outline of questions in consent • Why is consent important? • The manner of consent • Essential ingredients: voluntariness, capacity, information, authorisation • Circumstances when consent cannot be obtained: emergency, incompetence, waiver, therapeutic privilege • The withholding of consent • Standards

6. The importance of consent • A boundary that represents respect for the continuum of body and person • The lessening of invasiveness • The meaning of autonomy: the ability to steer one’s life • An ongoing challenge • Legal concerns: the proximity of battery and negligence • The right to refuse treatment • Overriding consent: a balancing act

7. The manner of consent • Express • Written • Oral • Tacit • Implied

8. The ingredients of consent • Voluntariness • Capacity • Information • Authorisation

9. The typical elements of a consent form aim to fulfil the key ingredients of consent • The name and other personal details of the patient • The nature of the intervention to be performed • Confirmation that the nature of the intervention has been explained, and that the patient’s questions concerning the procedure have been answered • In the case of operations performed in public and occasionally in private hospitals, a caveat that the intervention may not be performed by a particular surgeon • A statement that the patient consents to such additional procedures as may be thought necessary during the main intervention • A space for the both the patient and doctor to sign

10. Standards of consent • A consent form is not a patient’s informed consent, it is a representation • Beauchamp and Childress: consent that is effective but not autonomous, and consent that is autonomous but not effective • An autonomous decision?: voluntary, intentional, informed and deliberative • Mills: The ‘worthless endeavour’ of cursory consenting • Implied consent can amount to mere compliance with a doctor’s wishes or instructions

11. Patient compliance can ‘mimic’ implied consent. It is difficult to distinguish between them in practice: • Patient X: holds her arm out from mere compliance, without information and possibly under duress. She is silent and the doctor misreads this act of compliance as implied consent and administers the vaccination. The patient is neither informed nor willing to have the vaccination • Patient Y: Holds out her arm. She has had information but does not really want the vaccination. Again she is silent and again the doctor misreads compliance for implied consent and administers the vaccination • Patient Z: holds out her arm. She has been well informed • Only patient Z can be said to have given implied consent to the vaccination, yet all three patients presented to the doctor in a similar way (Aveyard, 2002)

12. Differing views of minor maturity • A study of children having paediatric orthopaedic surgery, patients, parents and doctors were asked for their views on when children could decide for themselves whether they wanted surgery or not Results: • Children themselves set the highest age for self-determination: 14 years • Parents slightly lower at 13.9 • Doctors the lowest figure: 10.3 years (Alderson, 1993, cited in Madden p. 489) (Illusion of independence?)

13. The uncertain status of consent for 16 and 17 year olds • 16: an adult for the purposes of consent • 18: an adult with full autonomy • Limits to 16 and 17 year old’s consent? • Non-fatal Offences against the Person Act 1997 (h) • Three questions: refusal of consent, status of underage psychiatric patient, and scope of ‘treatment’

14. Question 1 • The excerpt from the Non-Fatal Offences Act appears forward looking, it appears to extend autonomy generously to the over-16. It seems to grant a form of adulthood: paternalism implicitly disparaged; the family is implicitly relegated • However, refusal of consent, a major aspect of adult autonomy, is not mentioned. ‘A right to be wrong’ is not granted • We can’t be sure of the legal scope in Irish terms, but England uses ‘identical’ legislation (the Family Law Reform Act, 1969) and we can look to there for an approximate expression of our own law

15. Ironing out the legal status issues? • English courts have considered whether the provision confers a right on over-16s to refuse treatment. Typically, where a minor seeks to refuse treatment that is in his best interests, the courts will intervene and direct that treatment be given. Re R (a minor) (wardship: consent to medical treatment) Question 2: • Psychiatric treatment?: only an adult at 18

16. Question 3 • Arguably, a tension surrounds the term ‘treatment’. Where a medical intervention is not a treatment or a procedure in the commonly understood sense of the word, such as the prescription of the contraceptive pill, then does the 16 or 17 year old have the power to consent to it? The law is not clear. Medical council 18.3: procedure (h) • Significantly, English courts have allowed a wide interpretation of ‘treatment’ • Should treatment include consent to research?

17. Under-16s in Ireland • Reflections on the child’s autonomy are in some senses inseparable from the family. Having no personal power to consent, the child implies the family. Article 41 of the Constitution: Family ‘natural primary … unit group of society’ (h)

18. A supreme court affirmation of the family’s authority • North Western Health Board v W(H), 2001. PKU test refusal. The child is best served by deferring healthcare decisions to the parents. One judge felt ‘impatient’ with the parents resistance of PKU test. • Possibility of displacing the decision-making authority of the parents in ‘exceptional circumstances’, e.g. a risk to the life of the child. (See Times article, 2000)

19. Is there ethico-legal support for underage decision making in Ireland? • Child Care Act, 1991: Having ‘regard to his age and understanding’ [mutually modifying], consider ‘the wishes of the child’ • Criminal Justice (Forensic evidence) Act 1990, and Criminal Justice (forensic sampling and evidence) Bill 2007 (h) • Clinical Trials Regulations: take account of child’s wishes in accordance with their capacity to comprehend the issues involved (Hunter)

20. The Gillick Case • A mother sought a declaration that her daughters (all under 16) would not be prescribed the contraceptive pill without her knowledge or consent. It was decided that ‘mature’ minors had a right to give consent and to confidentiality (h)

21. The Gillick Competence Paradigm • Gillick allows 1) a divergence from parental autonomy and 2) from the insistence on chronological age • Interestingly, medical treatment is the only sphere of underage consent regulation which has had its chronological basis modified. Maturity does not effect alcohol, sexual intercourse, smoking, etc. • ‘The legal right of a parent to the custody of a child ends at the sixteenth birthday; and even up to then it is a dwindling right which the courts will hesitate to enforce against the wishes of the child, the older he is. It starts with a right of control and ends with little more than advice’ Hewer v Bryant, UK, 1969

22. The language of Gillick Maturity • Sarman, Gillick: the parent’s right yields to the child’s ‘when he reaches sufficient intelligence and understanding and intelligence to enable him or her to understand fully what is proposed • Scotland, Age of Legal Capacity Act, 1991: ‘so long as the child is capable of understanding the nature and consequences of the proposed treatment or procedure’ • Child Care Act 1991: having ‘regard to his age and understanding’, consider ‘the wishes of the child’

23. The Gillick Test 1 • The doctor must form the opinion that the girl (although under 16 years of age) will understand his advice • The doctor cannot persuade her to inform her parents or to allow him to inform her parents that she is seeking contraceptive advice • The minor is very likely to begin to or to continue having sexual intercourse with or without contraceptive treatment

24. Gillick Test 2 • The doctor must form the opinion that, unless she receives contraceptive advice or treatment, the minor’s physical or mental health or both are likely to suffer; • The minor’s best interests require the doctor to give her contraceptive advice or treatment, the minor’s physical or mental health or both are likely to suffer • The minor’s best interests require the doctor to give her contraceptive advice, treatment or both without parental consent

25. Gillick Test 3 • Any advice on contraception that will lead to unprotected intercourse must be accompanied by advice on safe sex Limits to Gillick: Refusal? • Courts are generally happy to permit a minor to take decisions consistent with improving his health, but not decisions that would prove injurious to health, welfare or life.

26. Constructing the Duties of Gillick Competence • The recommendations illustrate all of the concerns of the principles including consent, confidentiality, capacity, communication skills, discernment (it is a power, a personal quality, as much as a gesture) a balancing act of beneficence and non-maleficence and autonomy and justice. The principles and Gillick Competence in Ireland? • Gillick engagement mirrors what we already have in mind as the ethical treatment of children: listening, including, fostering autonomy and understanding. Beginning a lifelong conversation and trust: cultural impact. BMA: They don’t remain minors forever