Ethical issues in paediatrics and childhood Flashcards
Describe the issue of consent in an emergency
Exploration of exceptions to informed consent for children in emergency situations. Analyzing the court’s stance on children’s refusal of life-saving treatment in emergencies.
Often a matter of risk: is it worth intervening? what is the risk of it working?
- Queensland Supreme Court: mother positive, 10-20% risk to child, of this long-term consequences 25%
Discuss the concept of parental rights and duties
Delving into common law duties and parental rights concerning children’s medical treatment. Clarification on parental consent limitations, legal aspects, and when court intervention may be necessary.
Duties over rights
It has been suggested that parents have a zone of discretion.
Ultimate parents extends to children, severely intellectually impaired.
Discuss the law regarding child’s best interests
Evaluation of the subjective and objective aspects of assessing a child’s best interests. Considering cultural norms and religious beliefs in medico-legal assessments, emphasizing a holistic judgment approach.
Wording of the law is broad.
Discuss issues of Gillick competency
In-depth exploration of Gillick competence, factors affecting a child’s capacity to consent, and the balance between respecting autonomy and the patient’s best interests.
Describe issues of refusal of LSMT
Analysis of court decisions overruling parental refusals of life-saving treatments, especially blood transfusions. Insight into state legislation and the limitations on Gillick competent children’s autonomy.
WA case, 17 year old.
The strength of advance directives which has not really been tested.
Discuss issues around non-therapeutic sterilisation
Examination of cases involving parents seeking sterilization for disabled children. Highlighting court involvement, the best interests test, and ethical considerations surrounding non-therapeutic sterilization.
- puberty blockers for the intellectually disabled?
List some relevant cases and their outcomes
Re Heather [NSW 2003]: Court approved (consented to) chemotherapy for an 11-year-old whose parents wished to explore alternative therapies. Compromise for radio and chemotherapy. Passed away.
v B [QLD 2008]: Court concurred with parents and doctors that Termination of Pregnancy for a 12-year-old was in her best interests.
v Kiszko [WA 2016]: Following the removal of a brain tumor, parents refused chemo- & radio-therapy. Court ordered chemo- but not radio-. Child’s condition deteriorated. An application was subsequently made for radiotherapy, but the Court found that palliative care was now in the child’s best interests.
QLD v Nolan [2001]: Separation of conjoined twins. One twin had a 60-80% chance of survival, while the other would die. However, without surgery, both would die. Equal right to life, one would benefit, but the other would suffer no detriment. Basis of best interest.
Discuss the cases of Inaya and Sean/Russell and the issues involved
Re Inaya [2007]: Court found that the parents of an infant could consent to the donation of bone marrow to a cousin. The court also found the procedure was in the child’s best interests despite the accompanying risks of this nontherapeutic intervention.
- what constitutes best interest?
- relative closeness
Re Sean and Russell [2010 FamCA]: Court was asked to consent to gonadectomy in two children (18 months and 3 years), a treatment for Denys-Drash syndrome (meaning both children were likely infertile in any event). In both of these cases, the courts found that the parents had the authority to consent. As such, comparable future cases do not necessarily need judicial review. However, it would be prudent to get contemporaneous legal advice to that effect before proceeding.
- with modern board may be different
Discuss issues regarding intersex surgery
Historically, doctors would perform ‘corrective’ surgery on those born with ambiguous genitalia and commonly did so without (fully) consulting parents.
More recently, parental consent has been sought, but parents have unsurprisingly tended to be guided by doctors.
Over the past two decades or so, those with intersex conditions have made the case for non-intervention.
- Being intersex is not a disease or disorder per se.
- While some surgical intervention may be medically justified (e.g., ensuring the ability to urinate), ‘correcting’ the appearance of genitalia is not.
Best practice is to allow the child to develop, and for any unnecessary medical interventions to be delayed until they can be involved in the decision-making process to provide or refuse their consent.
Intersex Human Rights Australia
AHRC published a major report in Oct 2021
This year the ACT passed the Variation in Sex Characteristics (Restricted Medical Treatment) Act 2023. It requires doctors (and parents) to seek the approval of a review board for any proposed surgical intervention on the genitalia of a child with a Difference in Sexual Development (DSD), with one exception = circumcision
Discuss Baby M case
Born in 1989, Baby M (14/7/89–26/7/89) suffered from severe birth defects (spina bifida and hydrocephalus). Doctors and parents (who consulted with two Catholic priests) agreed that ‘conservative treatment’ was appropriate. She would be cared for but, in essence, would be allowed to die.
Contacted by a relative, a Right to Life organization demanded access to Baby M’s parents, claiming they wanted to adopt her. They subsequently made a police report alleging that Baby M was being drugged and starved to death in the hospital causing detectives to investigate.
Subsequent Coroner’s enquiry chastised Right to Life group and exonerated the parents and doctors involved in caring for Baby M.
Note : backdrop of letting children with Down’s syndrome die on a basis of best for all involved.
Discuss more cases
- Ashya King: Ashya was due to receive radiotherapy, but his parents sought proton therapy (possibly less harmful, positive benefit unclear).On 28/8/14, 6 days after his last surgery, King’s parents took him on a ferry to France without telling hospital staff. They were arrested in Spain on 30/8/14.
On 5/9/14 UK High Court ruled parents could take King from Spain to Prague for proton therapy. IIRC, this kind of treatment is now the standard of care. - Gard: Diagnosed with a mitochondrial disorder in late 2016. No established treatment, Gard’s prognosis was terminal.Clinicians applied to the court for a best interests ruling, which supported withdrawal of treatment. This was upheld at appeal (x3). Note: Savelescu and controversial non-maleficence
- Alfie Evans: In late 2016 Evans showed signs of seizures. In Jan 2017 an EEG revealed little reactive activity except when experiencing a seizure.
Assessed as having a neurodegenerative condition.At the end of 2017, without any improvement in Evans’ condition over the previous year, the hospital applied to the court to withdraw life support as he was in a semi-vegetative state and beyond help.
Expert testimony agreed that Evans’ condition was fatal and untreatable but differed over EoL care. The court ruled for withdrawal on the 20/2/18. The decision upheld on appeal 6/3/18. All further appeals considered to be without foundation.
Ventilation was withdrawn on 23/4/18, Evans continued to breathe unaided until 28/4/18. - Fixsler: Alta Fixsler suffered severe brain damage at birth and was placed on life support. Her parents are members of the Hasidic branch of the Jewish Faith. Permission granted to court to withdraw life support. The Fixsler’s then sought permission to take their daughter to Israel. This was refused. They also sought permission to take her home and have life support removed there. This was also refused. Alta’s life support was withdrawn on the 18/10/21, and she was pronounced dead three hours later.
- Raqeeb: In February 2019 Raqeeb, aged 4, suffered a brain bleed and was placed on life support. Got permission based on EU citizen status to transfer to Italian hospital. Still alive, condition uncertain.
- Battersbee: Paramedics continued CPR but assessed Battersbee as being a 3 on the Glasgow Coma Scale. Despite having no pulse on arrival at Southend University Hospital (40 mins after being found) circulation was restored. Battersbee was placed on life support and moved to Royal London Hospital the following day. Parents refused consent for brainstem testing. Barts applied for permission to do test, get MRI, not for wuthdrawing ventilation. Declared braindead almost two months before life support withdrawn due to legal arguments still being heard regarding best interests
Discuss additional issues
Time: Caring for young children whose condition and prognosis are comparable to those of Gard, Evans, and Fixsler is a protracted process. It can take some time before healthcare professionals conclude there is little to be done. And often much longer for parents to accept that this is the case, if they ever do.
Seeking legal judgment, and allowing appeals processes to be exhausted, also takes time. While this may be unavoidable, it is far from clear that it is in anyone’s ‘best interests.’
Protests and the politicization of situations such as these are becoming more common. Often, the actions of those seeking to get involved or providing comment (Fox News) turn out to be less than helpful. Equally, organizations such as the Christian Legal Centre often involve themselves in proceedings. A Judge in the Alfie Evans case described CLC as doing the parents “far more harm than it does them good” and said their submissions were “littered with vituperation and bile.” CLC consultant Pavel Stroilov (also involved in Battersbee) was described as a “fanatical and deluded young man” whose “malign hand” was “inconsistent with the real interests of the parents’ case.” Submissions made by the GLC in the Alfie Evans case declared his “best interests are irrelevant” when compared to the parents’ wishes.
