Deciding for incapacitated adult children
An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.
It is not uncommon to encounter parents who care for their incapacitated adult child. Nor is it unusual to confront their perplexity when told that their authority as a decision-maker for their child is uncertain. Only a few will have been granted a deputyship for health and welfare by the court.
In many cases, there can be little doubt that the parents have throughout their incapacitated child's life provided the best possible care, allowing him or her to be given every opportunity to blossom and grow. Understandably, parents in this situation may feel best placed to make the most informed decisions for their child both before and after that child reaches adulthood. To what extent is enduring parental influence recognised in English law?
In a conjoined hearing of three cases in 2019, Hayden J reviewed the status of the parent as a person who can make decisions relating to the life of their incapacitated adult child. It is possible for parents to apply to court to become deputies empowered to make decisions relating to health and welfare in these circumstances. But the Mental Capacity Act Code of Practice refers to deputies only being appointed in the 'most difficult of cases'. There was concern that such a deputyship risked 'infantilising' the incapacitated adult; and that the appointment of a welfare deputy can be '...both an unnecessary and disproportionate intrusion...(into the incapacitated adult child's) right to respect for his private life , and contrary to his best interests'. However, it was also conceded that '...the majority of people living in the UK believe that if they were to lose capacity their 'next of kin' would be empowered automatically to make substitute decisions on their behalf...it is a rude shock to many family members to discover that their role is only to 'be consulted' about best interests decisions by professionals...This shock may be especially keenly felt by the parents of people with learning difficulties when they lose parental authority overnight on their son or daughters' eighteenth birthday'.
This message was reiterated by the same judge in 2022, in the case of RN. He was twenty-two, had partial trisomy 13, and was unusual in surviving to adulthood, particularly having had several repairs of his congenital heart defect, Tetralogy of Fallot. The court found that RN 'plainly derives enjoyment from life...he is able to reveal his wishes and feelings to those around him by his general behaviour and reactions;’ he was scared of people wearing masks. RN has a severe learning difficulty and was unable to decide for himself whether to receive a Covid-19 vaccination. RN's mother, TN, had 'real anxiety' that vaccination would cause her son serious harm due to his heart condition. The court heard from medical experts that whilst myocarditis had been attributable to the vaccine, the myocarditis following natural infection was characteristically more severe. The court found that the evidence revealed a heightened risk to RN, on a statistical basis, of not having the vaccine. Mother separately argued that 'if an adult child lacked capacity, parental responsibility for that child continued, and that parental rights could only be overridden in extreme and limited circumstances'. The court fundamentally disagreed, finding that RN's freedom, rather than that of his mother, required protection. Adult status is predicated on a respect for autonomy. A young person who may lack capacity to make crucial decisions remains 'every bit as entitled to respect' as a capacitous person of the same age. Referring to his previous judgements, Hayden J found that the extension of parental responsibility past the age of eighteen, under the aegis of a personal welfare deputyship may be '...driven by a natural and indeed healthy parental instinct but it requires vigilantly to be guarded against'.
The incapacitated adult child must be afforded the same protections as any other adult; not to have decisions taken for them under the defensive armour of parental responsibility. ‘Parental responsibility’ is extinguished on the 18th birthday.
Robert Wheeler
Department of clinical law