What are the two values of autonomy?
Autonomy has INSTRUMENTAL value – I know what is best for me; and INTRINSIC value – it’s my life, I should have freedom to make my own decisions as a right. Without free will, we do not have moral responsibility.
What does the law outline about child consent?
A competent child can consent to treatment (like adults), but if a competent child refuses treatment, an adult with parental responsibility can consent to the treatment on their behalf.
What is the benefit and disadvantage of allowing competent children to consent, but parent’s consenting on their behalf if the child refuses?
BENEFIT: if a parent does not want treatment for their child, these laws give the child an opportunity to veto their parents’ decision – important since access to treatment is a right. Equally, parent can override child in consenting treatment. The principle underlying the law, then, is that if a doctor believes that a child needs medical treatment, then the law should make it as easy as possible for the doctor to give it. DISADVANTAGE: is illogical: It is saying to children, ‘we will respect your right to autonomy, but only if you give the right answer’.
What does a child need to be able to do in order to make an autonomous choice? (x3)
- Understand information.
- Be able to formulate values in order to weigh up information.
- Be able to make a decision without feeling under undue influence e.g. from parents.
What age do children typically meet the criteria to make autonomous decisions? Teenagers?
Depending on the decision and the maturity of the child, children will usually meet the criteria for autonomous decision making between the age of 8-15. Teenagers may meet the criteria but may make unwise decisions.
What is the prefrontal cortex?
Area of planning and REASONING and gives you inhibitions (controls social behaviours). It is functional by the age of 4 but continues to develop and fine-tune into adolescence (up to the age of 25). This lack of development at an early age impacts a child’s ability to make an autonomous decision.
What are the problems with children making autonomous decisions? (x3)
- COGNITIVE ABILITY: does the child fully understand the impact of their decisions?
- PSYCHOLOGICAL MATURITY: does the child feel pressurised to make particular decisions?
- VALUES, BELIEFS AND ASPIRATIONS: will they want the same thing in 10-years?
What are the arguments for a child autonomy and children making their own decision? (x6)
- Should autonomous children have the same rights as autonomous adults? Adults make bad decisions all the time.
- The values, aspirations, priorities and beliefs of adults change all the time – so why should we use this as an argument against children making choices?
- Even as adults, we often don’t appreciate the implications of our decisions for our future lives.
- Even young children value being able to make decisions
- Children need to learn how to make decisions and understand their consequences if they are to flourish as autonomous adults
- Overriding a child’s choice/decision risks promoting hostility and non-compliance
What does John Eekelaar define best interests in the context of children’s autonomy? !!!
- Children have three basic entitlements:
- BASIC INTERESTS: These are interests that are central to a child’s well-being. They would include the feeding, housing, and clothing of a child.
- DEVELOPMENTAL INTERESTS: These are the interests that a child has to enable him or her to develop as a person. Interests in education or socialization may be included here.
- AUTONOMY INTERESTS: These are the interests that children have in being permitted to make decisions for themselves.
- Where there is a clash between the autonomy interests and the other two, the developmental or basic interests would trump the autonomy interest. Children would therefore be able to make what adults might think of as ‘bad decisions’, but only if those are not such bad decisions that they interfere with matters that are central to a child’s well-being and development.
- In other words, an infringement of a child’s autonomy in childhood is justified if necessary, to maximize autonomy later in life: OVERRIDING AUTONOMY MUST BE CONSISTENT WITH ACTING IN A CHILD’S OVERALL BEST INTERESTS.
- Applied to this context, it would mean that children can be prevented from refusing life-saving treatment or treatment without which they would suffer debilitating conditions, because that prevention will increase their autonomy when they become adults.
- BUT: As a child gets older, increasing weight should be given to autonomous choices, and it is less likely that overriding their decisions will be in their OVERALL BEST INTEREST.
Problems with basing decisions on ‘best interests’?
HOW and WHO should decide what is a child’s best interests? What constitutes best interests is a question of VALUE, not fact. So, parents and health professionals may have different perspectives on what constitutes best interests.
What is Ashya King’s story?
- In 2014, at 5-years-old, Ashya was diagnosed with Medulloblastoma. He underwent surgery but developed posterior fossa syndrome post-operatively, resulting in speech, swallowing and mobility problems. MRI scan confirmed that the tumour had been completely removed.
- The medical team advised that chemotherapy followed by radiotherapy was for the best interests for Ashya for long-term survival. There followed a disagreement between the doctors and Ashya’s parents, and the family concluded that they wanted proton beam therapy as it came with fewer side-effects.
- The NHS did not fund this treatment at the time and requested he be treated with the proton therapy in the Czech Republic. The family of Ashya claimed that they were threatened with a court order for wanting the alternative treatment.
- Following the disagreement, Ashya’s parents removed Ashya from the hospital and took a ferry to Spain without letting anyone know.
- As Ashya was being fed through an NG tube attached to a pump, they took the machine with them, and obtained their own supply of feeds for the journey to Spain. When the hospital staff became aware of his disappearance they feared for his safety and contacted the police who later issued an international arrest warrant for Ashya’s parents.
- The parents were eventually arrested, raising a huge response by the public of dissent towards the authorities and NHS. They were released after 24-hours.
- The issues about treating Ashya were brought to the High Court, and ruled that King could receive the proton therapy in Prague.
- In 2015, scans showed no evidence of the brain tumour, and he was cleared of cancer in 2018.
What are the arguments surrounding the parents choosing the care of Ashya King? (x2 and x2)
Parental AUTONOMY and PARENTAL BELIEF of what Ashya’s best interests are (less side-effects over greater chance of extended life) are challenged by a DOCTOR’S BELIEF of Ashya’s best interests and fair resource allocation (proton beam therapy is very EXPENSIVE – what right does Ashya have to access this treatment when others can’t or when money can be used to benefit more people generally).
What were the dangers created in removing Ashya from hospital? (x3)
- Ashya required feeding with an NG tube – which requires specialist training to administer. Errors in administration can result in Ashya aspirating his food = fatal.
- Removing Ashya from care also meant that his other needs could not be tendered to and monitored by professionals = risky.
- The longer that Ashya was not receiving treatment, the worse his prospects of survival.
What must be considered to determine Ashya’s best interests? (x4)
- Side effects of treatments,
- Prospects of long-term survival,
- Benefit of having treatment his parents believe in,
- Consequences of forcing treatment against wishes of his parents.
‘Best interests’ arguments for and against parental autonomy?
FOR: parents usually know their children better than anyone else. The welfare of the family is highly relevant to the welfare of the child, so parents are generally best placed to decide what is in their child’s best interests. AGAINST: Parents may be so emotionally involved that they cannot objectively weigh up the benefit and burdens of treatment. The personal views of parents can also lead them to consider effective treatments as unacceptable.
‘Parental rights’ arguments for and against parental autonomy?
- FOR: individuals have their own personal values. Respect for autonomy means we should respect these personal views. It is desirable for parents to share their values with their children. Therefore, we should not interfere with the decisions of the parents.
- AGAINST: individuals do not have a right to impose their personal values on others. Autonomy can also be overridden if it harms others.
When should parent autonomy in a child’s decision be respected?
Only if the decision is in the child’s best interests and not detrimental to the child’s future autonomy. Therefore, parents should not be able to martyr their children to their value and belief system.
What happens when parents and health professionals disagree?
Differing values can lead to different assessments of a child’s welfare, harm and benefit. When this occurs, courts will place weight on the views of parents, but the guiding principle will be what is best for the welfare of the child.
What reduces disagreement between parents and health professionals when it comes to a child’s decision?
Good communication and reflection, to improve trust and mutual understanding.
What are non-therapeutic interventions?
These are interventions that aren’t carried out for therapeutic reasons e.g. someone donating an organ or tissue or being a subject in research.
What are the benefits (x2) and risks (x3) of tissue donation as a non-therapeutic intervention in children?
BENEFITS: altruism, save the life of a sibling. RISKS: physical harm to donor with no direct medical benefit, if the transplant fails and the sibling dies, the child may grow up believing it’s their fault, if the sibling dies because there was no donor, the child may grow up believing it is their fault.
Is research participation by children a societal duty? (x2 and x2)
BENEFITS: helps with medical progress in paediatrics, and it allows children to be altruistic. RISKS: adults don’t have a similar societal duty, and adults have better understanding of purpose and risks of participation (issue of consent).
When might non-therapeutic interventions be ethically acceptable in children too young to give consent?
When it is in the best interests of both parties concerned. For example, it would be in the best interests of a younger sibling to donate tissue/an organ to another sibling, as death from not receiving no transplant would result in: (i) loss of crucial family member = detrimental to emotional health, and; (ii) guilt –> these consequences are not in the interests of the young child, and would outweigh the risks and pain associated with donating.
NOTE: Consent in children of any age?
- Where possible, regardless of age, assent (consent) to treatment should be obtained from a child.
- For instance, the procedure of recording a 3-year-old’s temperature is far less traumatic for the child if they help to take teddy’s temperature first, and then, with new understanding, help to position the thermometer under their own arm. WHILST TIME-CONSUMING, THIS ASSENT IS PREFERABLE TO FORCIBLY HOLDING THEM STILL WHILE INSERTING THE THERMOMETER. However, if a child does not assent to treatment it is not an offence to forcibly restrain a screaming child if treatment is indisputably in their best interest.
