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

In the recent decision of Manchester University NHS Foundation Trust v Verden[1], 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 sought a declaration that it was not in William’s best interests to undergo a kidney transplant on the basis that the harm to him from a transplant and post operative treatment was greater than treatment with continuing HD until venous access was no longer possible. The Trust’s decision was reached after multidisciplinary discussion, obtaining two second opinions, and consideration and endorsement of the decision by the Trust’s Ethics Committee. During the hearing, however, the evidence presented by the Trust’s witnesses became more nuanced and their final position was that it was for the Court to decide what was in William’s best interests.

William’s family were strongly in favour of a transplant with post-operative sedation and ventilation, for the shortest period possible, despite the risks that it would entail. Accordingly, the central issue for the Court was whether the risks from the transplant, from the disease recurrence and the post operative treatment of PE which would involve a lengthy period of sedation and ventilation were such that the transplant was not in William’s best interests.

Preliminary matters

Capacity

In addition to an application for a declaration as to best interests, it is important to note that the Trust also applied for a declaration as to William’s capacity. Although William was a relatively mature minor, the Court found William lacked capacity to conduct the proceedings or make decisions regarding his medical treatment under the Mental Capacity Act 2005 (“the Act”) on the basis of his diagnoses. Capacity was not contested by the parties.

Reporting Restriction Order (RRO)

An RRO was initially granted on the papers, however at the time neither the Court nor the Official Solicitor who represented William were aware of the significant media coverage concerning the case, which had commenced prior to the RRO.

William’s mother made an application to dispense with the RRO, as she wished to launch a public appeal to find a living kidney donor. Following consideration of William’s Article 8 (respect for private and family life) and Article 10 (freedom of expression and information) rights under the European Convention on Human Rights, it was held as proportionate to accede to the application.

The law

In the United Kingdom, section 4 of the Act sets out the criteria to be applied to determine what is in an incapacitated person’s best interests.[2] The Court drew upon the summary of the key principles to be considered from the existing authorities in applying these criteria, which was provided by MacDonald J in Kings College Hospital NHS Foundation Trust v Haastrup[3]. These include:-

1. The paramount consideration is the best interests of the child. The role of the court is to take over the parents’ duty to give or withhold consent in the best interests of the child and to exercise its own independent and objective judgment;
2. The starting point is to consider the matter from the assumed point of view of the child. The court must ask itself what the child’s attitude to treatment is or would be likely to be. The child’s views will be given the appropriate weight in light of their age and understanding;
3. The question for the court is whether, in the best interests of the child, the particular decision as to medical treatment should be taken. Within this context, the court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome;
4. There is a strong, but rebuttable, presumption in favour of taking all steps to preserve life. It may be outweighed if the quality of life is sufficiently small and the pain and suffering and other burdens are sufficiently great;
5. There will be cases where it is not in the best interests to subject the patient to treatment, even though the child wishes to survive; and
6. Views and opinions of both doctors and parents must be taken into account with the court making its own decision on the child’s best interests. The court must be mindful that the views of the parents may, understandably, be coloured by emotion or sentiment.

In Australia, similar matters must be considered by a court when exercising its parens patriae jurisdiction and determining what is in a child’s best interests.[4]However, the presumption in favour of taking all steps to preserve life is not as explicit, arguably allowing for greater nuance in decision-making. A CEC in Australia may instead ask whether continued life is beneficial to the child.

The Court’s consideration of William’s best interests

It was uncontroversial that determining William’s best interests was complex, with the Court noting it was “a case of what is the least bad decision for William”.[5] This was further illustrated by the statements provided by a range of clinicians and independent experts, including nephrologists, intensivists, a psychiatrist and a psychologist, whose views differed in many respects. For example, Dr A, nephrologist, considered that William would be unmanageable post-operatively without sedation whereas Dr Carnaby, psychologist, originally believed William would not need ventilation or sedation at all with the right support.[6] At a meeting prior to the hearing, the experts reached consensus on recommendations that ventilation and sedation would be required post-operatively and the minimum period of PE to optimise the chance of a successful transplant. Moreover, some of the professionals shifted their position on certain matters once the matter proceeded to hearing.[7]

After careful consideration of all of the medical evidence, the Court considered that there were  two choices for William:

1. He does not have a transplant and continues on HD, however venous access would run out in about 12 months’ time and he would then die; or
2. He does have a transplant which carries various risks including failure of the kidney, 50-100% risk of disease recurrence, failure of PE, significant risks physically and psychologically and that the after-effects of the procedures may lower his quality of life.[8]

In considering the choices from William’s point of view, the Court considered what mattered to him was living with his family, playing sport and performing useful tasks.[9] The Court noted William had a good quality of life which he would want to continue.[10]

The Court concluded that:

“the transplant is not futile and although the chances are it will lead to an increase in William suffering in the short to medium term, it has the commensurate benefit which is that there is a chance for William of a long-term survival, if the transplant goes ahead”.[11]

Accordingly, the Court held it was in William’s best interests to:

1. have the kidney transplant;
2. be electively sedated and ventilated post-operatively for up to 7 days to have care and monitoring including via the numerous lines required after the transplant;
3. be electively sedated and ventilated for a period of 14 days after disease recurrence which was likely to be detected within 3-4 days of the transplant, allowing for PE to take place over 10 sessions in the 14-day period. We note the specificity in the number of days was important to avoid what one expert intensivist labelled ‘mission creep’; and
4. be supported by carers once he was extubated, if it was considered necessary, and ideally by carers he was familiar with.[12]

Overall, this decision highlights the complexities in these finely balanced best interest decisions concerning children and young adults. Whilst MacDonald J’s guidance in Kings College Hospital NHS Foundation Trust v Haastrup[13] directs that the Court must do its best in balancing factors for and against the proposed treatment, this case demonstrates that the courts are faced with not only the complex medical evidence, but also wider considerations concerning the wishes and feelings of the patient.

Implications for CECs

The involvement of parents in CECs’ process

A CEC was initially convened to consider William’s management after two second opinions were obtained by the treating clinicians, although it had not yet been suggested William could be sedated and ventilated for a minimum of 7 days and up to 14 days or so. At that stage, the committee shared the clinicians then views that the invasive approaches to treatment were doing “more harm to William than good”.[14]

Counsel for William’s mother noted that the parents’ views had not been taken directly into account by the committee, whereas a number of clinicians had attended the meeting to give theirs. The Court considered that the committee would have had a better idea of William’s quality of life, his wishes and the position of the family had the meeting been convened in two parts, with one stage focussed on the family and the other on the medical considerations of the clinicians.[15]

This is not the first case in the UK which has commented on the extent to which parents should be involved in CECs’ process. In  Great Ormond Street Hospital for Children NHS Foundation Trust v MX and others[16], the Court considered the lack of involvement of families as an issue of medical ethics. The Court held:

“the absence of any prior consultation or participation, cannot be good practice and should generally be unacceptable. Even at hastily assembled meetings there should be notice taken of the views of the patient and/or close relatives which could take the form of some written notes or letter submitted on their behalf. There should be guidance on patient/family participation and a clear protocol of how and when they are informed as to the arrangements being put in place for an Ethics Committee to meet along with being informed as to the outcome.”[17]

Best practices for CECs – experience from Australia

It is beyond the scope of this article to discuss whether CECs should be required to engage directly with families or the extent to which families should be involved in CECs process. Notwithstanding, perhaps this case may not have proceeded to hearing if William’s parents’ views, particularly in respect of William’s quality of life and wishes, had been taken directly by the committee.

In Australia, the role of a CEC is to make explicit clinicians’ implicit assumptions affecting the decision making process in order to provide a framework and guidance to treating clinicians facing complex decisions. Parents views are generally involved to a greater extent in a CEC’s process. Typically, best practice would dictate that, where parents are strong advocates, their views should be indicated  to the clinicians and even an offer given that the CEC speak to the parents before the meeting. The CEC would then revert to the clinicians with the parents’ views and discuss with them the process of feeding back to the parents any decisions made after the meeting. The process is somewhat similar to that recommended in the abovementioned UK decisions. Nonetheless, the importance of CECs providing an independent analysis of treatment decisions is significant.

Acknowledgement

The authors would like to thank Dr Andrew Court and Professor Lynn Gillam AM from the Melbourne Royal Children’s Hospital for sharing their experience and expertise to provide an Australian perspective for this article.

This article was originally published in volume 30.7 of the Australian Health Law Bulletin. 

Read other items in the Australian Healthcare Brief – December 2022

Read other items in Healthcare Brief – April 2023

 

[1] [2022] EWCOP 9.

[2] The Court also highlighted William’s rights were protected by the European Convention on Human Rights, including the right to life (Article 2), protection from inhuman or degrading treatment (Article 3) and the right to respect for a private and family life (Article 8).

[3] [2018] EWHC 127 (Fam), as cited in Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, at [115].

[4] These were proposed by Nicholson CJ in Re Marion (No.2) (1994) FLC 92-448.

[5] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [157].

[6] Dr Carnaby ultimately fell into line with the other professionals in his evidence before the Court and said he would defer to their views on this point. See Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [49].

[7] For example Dr A, Professor Saleem, Dr Carnaby and Dr Danbury. See Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [37], [49], [78], [79].

[8] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [155], [158].

[9] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [136].

[10] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [136].

[11] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [160].

[12] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [162]-[164].

[13] [2018] EWHC 127 (Fam).

[14] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [105].

[15] Manchester University NHS Foundation Trust v Verden [2022] EWCOP 9, [106].

[16] [2020] EWHC 1958 (Fam).

[17] Great Ormond Street Hospital for Children NHS Foundation Trust v MX and others [2020] EWHC 1958 (Fam) 8, [22].