4 December 2018
BBC Radio 4, Sunday 9 December 2018, 17.00 GMT or via BBC Sounds
This programme features KCL MA Medical Ethics and Law alumnae Victoria Butler-Cole and Sarah Barclay, co-founder (with alumnus Dr Simon Meller) and Director of the Medical Mediation Foundation.
How and when should the decision be made to end the life of a critically ill child?
The BBC’s Medical Correspondent Fergus Walsh reflects on the legal and ethical challenges raised by controversial and emotionally charged cases, like those of Charlie Gard and Alfie Evans.
Their impact reverberated around the world, prompting protests on the streets, an outpouring of emotion on social media and the vilification of hospital staff. Even the US President and the Vatican got involved. Though these cases were very different, in each the parents were locked in a bruising battle with the hospital for the right to make decisions about how and where to treat their children.
The current legal test focuses on what is in the child’s best interests and, in court, the hospital, the parents and the child all have separate legal representation.
But the potentially adversarial nature of the court system and the presence of ferocious debate on social media means these intensely difficult decisions can became even more emotionally charged.
The programme examines whether it’s possible to improve the current system, to prevent more cases reaching court and whether the legal process itself could be improved.
16 July 2014
Personally, I prefer the Compassion in Dying
form (plus accompanying guidance notes) to the Alzheimer’s Society form. The main reason for this is that the triggering condition for the refusal (i.e. when the refusal is to become effective) is rather strange in the Alzheimer’s Society form. It’s when ‘the gravity of my condition/suffering is such that treatment seems to be causing distress beyond any possible benefit’. The goal of an ADRT is to refuse treatment which others would or might think is in your best interests (otherwise there’s little point – if everyone agrees the treatment is not in your best interests then it would not be lawful to give it under the Mental Capacity Act 2005). This triggering condition doesn’t seem to me to leave much (if any) scope for this. If the treatment causes distress beyond any possible benefit then it is hard to see how it could be given as it would not be in your best interests. The balancing of burdens against benefits is exactly what the courts (and the Mental Capacity Act Code of Practice) require in order to reach a decision on your best interests.
You can contrast this with the triggering conditions (there is a choice) in the Compassion in Dying form
, the most relevant one of which is: ‘I suffer serious impairment of the mind or brain with little or no prospect of recovery together with a physical need for life-sustaining treatment/interventions’. Here it is quite possible that different people will have different views on whether life-sustaining treatment is in your best interests as the ADRT will be triggered (in dementia patients) once their condition constitutes a serious impairment and there is little or no prospect of recovery. So the ADRT will have a role to play.
Compassion in Dying also have a free phone line you can call to get help in filling out the form; details are provided within the form as well as on their website.
NB: Compassion in Dying has a relationship
with Dignity in Dying. They are separate organisations but they work out of the same offices.