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Understanding Ethics and Law for Children in the Perioperative Care Setting

ED HOROWICZ

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Learning OutcomesTo gain an understanding of the law relating to children in healthcare.Introduction to how the law differentiates between competent and incompetent children.To gain an understanding of how law impacts on caring for children within the perioperative environment.Introduction to applying the legal and ethical principles to consent for children undergoing surgical procedures using scenarios.

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The Moral Status of Children What factors influence how we see children in our society? What are the ethical principles that relate to children?

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Paternalism Ethical principle whereby the choices of an individual are overridden by another person in authority in order to benefit or avoid harm to that individual.

In children’s healthcare this could be the parent/care or doctor.

Weak Paternalism- Most common justified form applied to children because they are unable to understand the harm that may relate to a choice.

E.g- Parent preventing a toddler from picking up a cup of hot coffee.

Strong Paternalism- Advocated belief that in some circumstances a decision ought to be over overridden, even though the decision is made by a person with full capacity.

E.g- 17 year old student who refuses a blood transfusion because of religious beliefs. (We will come back to this later!)

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UNCRC United Nations Convention on the Rights of the Child Outline of the Convention

Ratified by all nations, with the exception of Somalia.

Rather than being directly legally enforced, it is part of international law and approached through incorporation into domestic law.

Healthcare forms an important component and the physical well-being of children is paramount.

Makes clear that harm caused out of ‘cultural tradition’ should be outlawed e.g female genital mutilation.

Consider non-therapeutic male circumcision though?

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Children and the Law English law provides that a child is a person under the age of 18 years.

Legislation empowers that a child between 16-18 can consent on their own behalf under the Family Reform Act 1969 and that they are competent to do so under the Mental Capacity Act 2005.

Under 16 it has to be decided if the child is competent or incompetent.

Are they able to make a reasonable decision based on understanding all of the information given to them?

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The Children Act 1989 The Children Act 1989 removed the perception of parental rights and redefined the parental influence as responsibilities.

This provides that those with responsibility have a duty to act in the child’s best interests, otherwise a higher authority will take the authority to do so.

Importantly consideration of the child’s ascertainable wishes and feelings are to be considered, taking into account age and understanding.

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The Incompetent Child Under 16

Under 16 it is presumed that a child is not competent to make medical decisions, however this presumption is importantly rebuttable! Opposite to adults.

Generally, if parents/a parent make a competent responsible decision for a child to undergo appropriate medical treatment then it is considered legal.

For urgent treatment to avoid death or serious harm the doctor may perform treatment without consent or a court order, even if the parent objects, providing that there is insufficient time to gain either.

As part of the professional responsibilities of healthcare professionals, engagement to an appropriate extent with the child is paramount.

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What Happens When There Is Disagreement?

Where a child is unable to make a decision, there are circumstances where those with responsibility disagree.

Parents disagree with the doctors.Consider recent example of Ashya King- Proton Beam Therapy.

Immunisation

Young child uncooperative with parent.Consider the child who is reluctant to come to theatre for vital emergency surgery, in comparison to a child who is reluctant to come for minor elective surgery.

We recognise the difference in these scenarios and act accordingly as part of our duty of care.

However, children are rarely able to refuse surgery if it is deemed to be in their best interests but this gets more complicated as they get older.

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Right Some Case Law!What happens if parents disagree with the doctors?

Re B [1981]- Infant with Down’s Syndrome and intestinal obstruction requiring surgery. Parent’s refused to give consent as at the time life-span for the child was 20-30 years. Surgeons refused to operate without consent but court intervened and provided that the operation was to be performed.

Parents argued that the child would have no quality of life but this was disagreed with by the court and medical evidence.

Contrast with Re T [1997]- Child born with life-threatening liver disease who had undergone previous transplant and further surgeries resulting in pain and suffering. Doctor’s argued that transplant was the best option but mother disagreed and refused consent. Court found in favour of mother despite medical evidence.

Controversial decision, criticised for focusing on the burden to the mother caring for the child.

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The Case of Re A [2001] Mary and Jodie were conjoined twins. Jodie was the stronger of the two and capable of living independently. However, Mary was dependent on Jodie for survival. Without surgical separation both would die but if separated Mary would likely die and Jodie though would likely survive.

Their parents were Roman Catholics and believed in the sanctity of life, as such would not consent to the procedure.

Doctors sought legal declaration that it be lawful to carry out the surgery.

High Court granted this and on appeal so did the Court of Appeal.

It was considered to be in both baby’s best interests.

Challenged the notion of whether parental beliefs are beyond the scope of the law in relation to children.

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The Competent Child If the child can show that they have sufficient maturity to make the decision then the child can provide legal consent for medical treatment.

The authority for this comes from Gillick v West Norfolk AHA [1985] Mrs Gillick argued that her children should not be given oral contraceptive medication without her consent. The court held that a child could legally give consent to medical treatment if……

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Gillick Test The child understands the medical issues. The child must understand the ‘moral and family issues’ involved. The child need only have maturity to consent to the procedure. If the child fluctuates between competent and incompetent then should be treated as incompetent.

The court must be persuaded that the child is sufficiently mature to reach their decision and not just be repeating the views of their parents.

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The Limitations of Gillick Although Gillick appears to be very much respectful of a competent child’s decision, it can be overruled as part of the guidance set by the court.

In Re S [1993],the courts overruled a 14 year old Jehovah’s Witness decision to refuse a blood transfusion as she could not explain clearly why she objected.

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The Plight of the Adolescent The law under Gillick provides that a competent child can consent to treatment.

What about refusal?

We saw in Re W that refusal is considered separately to consenting to treatment.

The same in Re E [1993] where a 15 year olds refusal of blood transfusion was overruled.

Even in the case of the older adolescent, 17 in Re P [2003] the courts utilised the principle of parens patriae (acting in the best interests of those who cannot do so themselves), despite law under the Family Reform Act 1969.

So it appears that a competent child can consent to but not refuse treatment, this is heavily criticised.

However consider the case of Hannah Jones.

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What happens when the parents disagree with the

child? The key legal issue here is does the child have capacity to disagree with a parents decision?

This type of case is usually relevant to older children who refuse treatment, contrary to their parents wishes.

See Re W [1993]- 15 year old girl with anorexia nervosa, deemed competent, refused treatment. Held that refusal could be overridden by her parents and the court.

Controversial decision- Consider ethical principles of autonomy and paternalism?

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Parents Disagree With Each Other

The Children Act 1989, 2(7), provides that a parent with parental responsibility can act alone and consent to treatment.

However, the courts have held that they must consult and agree with each other for exceptional issues.

Consider Re J [2000]- A separated couple who both held parental responsibility disagreed over whether the 5 year old boy should be circumcised. Father was Muslim and mother Christian, neither practicing.

Held that the surgery was irreversible and of considerable consequence, satisfying the exceptional category.

Consider Re C [2003] - Immunisation

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How Have Professional Bodies Implemented The Law In Practice?

The GMC provide guidance;

Good Medical Practice. 2013. London: GMC.

The British Medical Association have issued guidance;

Consent, rights and choices in healthcare for children and young people. 2001, London: BMA.

The NMC and HCPC require that you practice within the legal boundaries when seeking consent and that where disagreements occur appropriate steps should be taken to resolve any issues using professional and legal frameworks.

For certain issues specific guidelines have been issued

Best Practice Guidance for Doctors and other Health Professionals on the provision of Advice and treatment to Young People under 16 on Contraception, Sexual and Reproductive Health. 2004. DoH: NSO.

The Law and Ethics of Male Circumcision-Guidance for Doctors. 2006. London: BMA.

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Illegality Outside of the medical exception (set out in R v Brown [1994]), whereby it is lawful for healthcare practitioners to perform surgery when consent is obtained, there are criminal offences to protect children from harm.

Genital piercings although also an exception would be considered as unlawful. Female Genital Mutilation Act 2003- Numerous offences Tribal facial markings under R v Adesanya [1974] (Yoruba Markings).

Is non-therapeutic male circumcision any different?

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Impact Of Law Relating To Children Within The

Perioperative Environment Recognising our professional accountability and professional duty of care.

Caring for children requires that we understand the difference between a competent and incompetent child.

The issues surrounding consent and the rights a child has with regard to their own body.

The responsibilities of parents/guardians and those awarded to other agencies by the courts.

Understanding that treatment is not always agreed by all parties and that this can have implications, to not only the child’s health and wellbeing but the parents as well.

Recognising our role as advocates, to ensure that a child’s care is within the legal boundaries and if uncertain then we must advocate for them.

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The WHO Checklist Consider the legal issues that apply to the WHO checklist. Checking consent in the anaesthetic room.

Is the it the correct consent form?

Does the person agreeing to consent have the authority to do so?

What if that consent is withdrawn in the anaesthetic room by either the incompetent or competent child?

Have surgical scrub staff just checked the form or checked the form with the patient?

Legal consequences of wrong patient/site surgery?

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Scenario 1 Jack is 14 years old and has brought himself to hospital after attempting to pierce his ear and in the process causing a severe laceration that now requires surgical intervention. He has requested that his mother is not contacted, he is adamant that he understands the procedure and the SHO believes that he is competent to do so.

Apply what you have learned What are the ethical and legal issues? Would it be different if only minor treatment were required?

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Scenario 2 Sophie is 4 years old and has been rushed to emergency theatres after being found lying in the road as a result of being hit by a car. There is evidence of internal bleeding that if not stopped will be of grave danger to her life. Her mother cannot be contacted and Sophie does not want the surgery.

The medical team are planning to operate but there is no consent form signed. Apply what you have learned!

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Scenario 3 James is 12 years old and has just been diagnosed with a malignant osteosarcoma on his left femur. He requires major urgent surgery to remove the tumour and reconstruct his femur.

Surgeons want to consent him for blood transfusion, which is likely to be required and autologous blood transfusion is not an option. James and his parents are Jehovah's Witnesses and refuse to consent for any blood transfusion.

What are the ethical and legal issues? What would be the likely outcome?

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Questions?

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References Beauchamp.T and Childress.J., 2009. 6th Edition. Principles of Biomedical Ethics. Oxford: Oxford University Press.

Donnelly.M and Kilkilly.U., 2011. ‘Child-friendly healthcare: delivering on the right to be heard’. Medical Law Review 19: 27-54.

Harris.J. (Edit), 2001, Bioethics. Oxford: Oxford University Press.

Herring.J., 2012. 5th Edition. Medical Law and Ethics. Oxford: Oxford University Press.

Gilmore.S and Herring.J., 2011. ‘No is the hardest word: consent and children’s autonomy’ Child and Family Law Quarterly 23: 3-25.

Mason.J and Laurie.G., 2013. 9th Edition. Law and Medical Ethics. Oxford: Oxford University Press.

Pattinson.S., 2011. 3rd Edition. Medical Law and Ethics. London: Sweet and Maxwell.