The question of long-term ventilation for children with progressive conditions, such as muscular dystrophy or metabolic disease, is one of the enduring puzzles in paediatric ethics. Is it ethical to put a child on invasive mechanical ventilation when they will never be able breathe again on their own, and will inevitably die from their condition?
Today, 80% of children treated for cancer will survive. However, a significant proportion of survivors are at risk of infertility, due to toxicity of their treatment. The Royal Children’s Hospital is a leader worldwide in promoting discussion of fertility issues at the time of treatment, and offering options that might be able to preserve fertility for the future.
One of the growing worldwide challenges in paediatric health care is how to understand and respond to some of the many ways in which families of sick children use social media. This presentation draws together a number of strands of thought from my recent sabbatical in the UK, where the paediatric hospital staff are still experiencing the flow-on effects of the high-profile (and high-conflict) social media campaigns run by parents of Charlie Gard and Alfie Evans. I will present some data from two recent studies of how families in UK and Australia use social media, especially crowd-funding, and then raise for discussion some of the ethical and social challenges arising from social media use.
The child’s right to know is usually raised in discussions about whether a child should be given information about their medical condition – what it is, what treatment is proposed, what the outlook is long-term. The standard ethical position and usual clinical practice, is that children should receive developmentally appropriate information. Even on this matter, there are noticeable differences about what information is appropriate at what stage, and what counts as a sound reason to give that information
This presentation will consider problems encountered when parents and staff disagree on how much control parents should have in medical management, and when they disagree on what is best for a sick child.
Recent cases of conflict around medical treatment for seriously ill infants and young children have raised a number of questions about the nature, consequences and ethics of disagreement in neonatal intensive care.
How often do serious disagreements about treatment occur? Are they becoming more common? Why do disagreements occur? If there is disagreement between parents and health professionals about treatment for a child, what should the health care team do?
Victoria was the first Australian State to adopt a comprehensive human rights law in the form of the Charter of Human Rights and Responsibilities Act 2006. Human rights can help build stronger and transparent decision making that focuses on the person, and is particularly beneficial in strengthening healthcare decision making.
In recent years, paediatric health care settings in Australia and across North America have entrenched their commitment to families in organizational policies, programs, practices and public materials. Providing care that is sensitive to a family’s values and context has come to be recognized as beneficial for the paediatric patient. However prioritising the wishes of families above all else can result in falling short in fulfilling duties to the patient.
“Factitious Disorders by Proxy” occur when caregivers (usually parents) exaggerate and/or fabricate symptoms and signs of illness in a child. This can sometimes be driven by an underlying personality disorder in the caregiver, or because of excessive anxiety that a serious illness is being missed by health care professionals.
In a recent case in the US, a mother requested a vasectomy for her 13 year old son. He has autism and intellectual disability, and functions at the level of 4-5 year old. He had starting talking about getting married and having children, and she was concerned to make sure that he could never father a child. We will discuss this case, in the context of the wider ethical debate about sterilisation of children and young people, mostly young women, with intellectual disability. Concepts of bodily integrity, dignity and human rights meet with the practicalities of life for a young person with ID and their parents and carers.
