These very difficult situations raise numerous legal and ethical questions. This post takes a brief look at one alternative and controversial process for making such decisions although I do not advocate its adoption here.
Senator Ted Cruz (Texas) is an American politician and attorney serving as the junior United States Senator from Texas since 2013. He was a candidate for the Republican nomination for President of the United States in the 2016 election.
Barrister Matthew Scott in his excellent article, The Tragic Case of Alfie Evans , has highlighted Tweets by Senator Cruz regarding Alfie Evans:
Alfie’s parents, Kate James and Tom Evans, wish to seek experimental treatments for what is thought to be a mitochondrial condition. Italy has granted Alfie citizenship and offered to transport him to a Vatican hospital.— Ted Cruz (@tedcruz) April 25, 2018
USA:It is a grim reminder that systems of socialized medicine like the National Health Service (NHS) vest the state with power over human lives, transforming citizens into subjects.— Ted Cruz (@tedcruz) April 25, 2018
In the USA, it is far from the case that the courts are never involved. On 26th April there was the report of a mother in New Jersey seeking a court order to require a hopsital to maintain life support for her gravely ill son.
The Texan system - which Senator Cruz will be aware of - involves referring disputed cases to Ethics Panels. - see Houston News - In Texas, a Hospital Ethics Panel - Not the Patient or Family - Decides Whether to End Care and Should Ethics Committees be Death Panels?
The Ethics Panel system exists under the Advance Directives Act (TADA) 1999. This legislation is considered by Professor Dominic Wilkinson in an article published by Practical Ethics - Groundhog day and legal appeals. (What if Alfie were a Texan?). Part of the legislation addresses situations where doctors refuse to provide treatment requested by a patient or a family. Doctors can refer the case to an Ethics Committee which will hear evidence from both the medical professionals and the family. If the committee agrees with the doctors, the medical team are legally permitted to withdraw treatment after 10 days. There is only a limited ability to appeal the decision or to prolong the 10-day period.
One aim of the 10-day period is to allow families the opportunity (if they can) to identify an alternative provider. The patient is responsible for any costs incurred in transfer to another facility.
Texas law lets Hospitals and Doctors override your Advance Directive and Terminate Curative Care.
Practical Ethics - Harm, Interests and Medical Treatment: Where the Supreme Court got it wrong - 29th March 2018
Surviving Hospitals - article by Painter Law Firm -How Texas Law allows health care providers to end treatment
At the Family Justice Council's 11th Annual Debate held in November 2017 there was a short debate on the question - “Parental autonomy and a child’s best interests: Should the courts have the final say?” The Transparency Project considered the debate HERE.