The complexities of best interests decisions and the role of parents in clinical ethics committees process

• Published date: 25 October 2022
• Law Firm: Kennedys
• Author: Ms Cindy Tucker, Louise Williams, Rob Tobin and Amber Banerjee

In the recent decision of Manchester University NHS Foundation Trust v Verden¹, the Court of Protection (the Court), was required to determine whether an order should be made that it was in the best interests of a 17 year-old, who lacked capacity to make decisions regarding medical treatment, to have a kidney transplant with sedation and ventilation post-operatively.

The case is significant as it considers the complexities in finely balanced best interest decisions concerning children and young adults and the extent to which parents should be involved in clinical ethics committees' ("CECs") process. The case differs from the more usual scenario of withdrawal of treatment or an order for medical treatment against a guardian's wishes in that it concerned a request to the Court to determine that complex and invasive treatment requiring a limited resource was in the best interests of a young adult who lacked capacity, and whose parents desired that he receive the treatment. This article provides an overview of the judgment and its implications for CECs.

Background

Facts

The case concerned the treatment of William Verden who had diagnoses of moderate to severe learning disabilities, autistic spectrum condition and attention deficit hyperactivity disorder, with accompanying behavioural disturbances.

In November 2019, William presented to the Royal Manchester Children's Hospital ("the Hospital") with signs of kidney failure. He was subsequently diagnosed with Steroid Resistant Nephrotic Syndrome ("SRNS"). In April 2020, peritoneal dialysis was commenced. It was not successful and he was commenced on haemodialysis ("HD") for four hours per day three days a week, and two hours a day once per week.

There were problems with dislodgement of lines and catheters caused by William touching dressings and the sites of the lines. A new line was inserted in December 2021.

Clinicians treating William considered there were only two venous access sites left to use, and that venous access would only be possible for another 12 months. Without ongoing venous access for HD, William would die from renal failure.

The only alternative to HD was a kidney transplant. For William, the chance of a successful kidney transplant was complicated by:

1. The high risk of recurrence of SRNS. The most optimistic risk of recurrence was estimated at 47%, and around 80% or above on a worst case basis. If it recurred, he would require plasma exchange ("PE") for an unspecified and potentially prolonged period, and the period of survival of the transplant would be decreased from 15-20 years, to 7.5-10 years. PE would require multiple lines. William's treating nephologist initially considered that PE may be required for over 4 to 6 weeks. After discussion with an independent nephologist, it was agreed that PE would need to be administered for a minimum of 10 sessions over 14 days.
2. William's hypersensitivity to anything on his skin meant there was a real risk of him dislodging tubes and lines post operatively, and if PE was required. Any dislodging of the lines would put William and his treatment at serious risk.
3. William's unpredictability and aggressiveness towards others due to his diagnoses and poor impulse control. William would not cope with change and would have difficulty adapting to sudden changes which would occur in a Paediatric Intensive Care Unit if he were to have a transplant and to the many lines that would enter his body post-operatively.

The risk of William dislodging lines post-transplant could only be addressed by keeping him ventilated and sedated, however this posed significant physical and psychological risks.

Parties' positions and the issue in dispute

The Manchester University NHS Foundation Trust ("the Trust"), which is responsible for the Hospital, originally...