Legal Update: Mental Capacity Act – Ascertaining past wishes and feelings in best interest decisions


Re PW v Chelsea & Westminster Hospital NHS Foundation Trust, RW & Others [2018] EWCA Civ 1067: Court of Appeal refuses permission to appeal in a case in which a patient’s family sought to overturn an order that it was not in RW’s best interests to continue receiving clinically assisted artificial nutrition and hydration (CANH) via an NG tube post discharge.  The family’s argument that the judge had given insufficient weight to RW’s past wishes and feelings was held to be unfounded

Background

RW was a 77 year old hospital patient with a diagnosis of end stage dementia. Due to swallowing difficulties he had been receiving CANH via a naso-gastric (NG) tube.  RW was described as bed bound, unresponsive (except to pain) and unable to communicate. He lacked capacity to make decisions about his medical treatment.

RW was medically fit for discharge, indeed he had been ready for discharge for several months. All parties agreed that it was in his best interests to be discharged home into the care of his four sons, one of whom was the Appellant, PW. The treating clinicians considered that it was not in RW’s best interests to be discharged home with an NG tube in situ and that instead he should be discharged home for palliative care and oral comfort feeding only. Clinicians were concern that the presence of an NG tube placed RW at risk of aspiration. Frequent episodes of tube dislodgement in hospital meant that the tube required frequent replacement which had resulted in nasal trauma and discomfort for RW.

NICE dementia guidelines were relied upon which state ‘artificial feeding should not generally be used in people with severe dementia for whom dysphagia [swallowing difficulties] or disinclination to eat is a manifestation of disease severity.’

The family vociferously disagreed with the proposal to withdraw CANH and the relationship between the family and clinicians broke down with the sons’ behaviour towards hospital staff being described as aggressive and confrontational.

The Trust made an application to the Court of Protection for determinations concerning RW’s disputed medical treatment.

Court of Protection

The court heard evidence from RW’s treating clinician and a jointly instructed independent expert who both agreed that continuation of NG tube feeding following discharge home was neither clinically appropriate nor in RW’s best interests. In evidence the independent expert stated:

Offering potentially life lengthening treatment in the form of CANH is no different ethically in this scenario than offering other forms of treatment… Prolonging RW’s life, with no recognition of his pain, indignity or suffering and with no potential for recovery from his progressive illness is unjustifiable to my mind and represents a futile, overly-burdensome intervention. RW can’t communicate, he can’t manoeuvre himself in his bed, he can’t swallow more than tiny amounts, he is likely to experience discomfort in his pressure areas from his urinary catheter. I do not think I am projecting my personal view about his quality of life in saying his existence is undignified.

The Official Solicitor, representing the interests of RW, was in agreement.  The court heard that if NG tube feeding was continued post discharge without complication RW might live for ‘months, a year or possibly longer.’ Were he to develop a complication this could be a terminal event. If NG feeding was stopped the likelihood was that he would die within weeks.

The family contended that RW’s tube should remain in situ post discharge so that CANH could be continued at home. They said they would provide continuous 24 hour care for RW which would reduce the risk of the NG tube becoming displaced. PW claimed to have considerable experience of NG feeding having cared for his young daughter who had required NG feeding due to a progressive neurological illness. He claimed to be trained in the use of an NG tube and tube placement.

The family described RW as a religious and stoical man who was not scared of death but did not believe in quitting. They said, based on past experience, RW disliked hospital and never wanted to go back. The family were adamant that RW would want to be fed at home by NG tube and that he would not want to starve. In evidence the family admitted that these conversations with RW about end of life decisions took place at a time when he was already compromised by his dementia.

Mrs Justice Parker, endorsing the position of the Trust and the Official Solicitor, made a declaration that it was in RW’s best interests to have the NG tube removed and be discharged home for palliative care. Parker J refused the family permission to appeal so the family sought permission from the Court of Appeal.

The Appeal

The case came before Lady Justice Sharp, Lord Justice Jackson and Lady Justice Arden. The grounds of appeal by the family were two-fold:-

  1. The judge failed to appreciate and give any or any adequate weight to RW’s wishes and feelings
  2. The judge overstated the risk to RW of receiving NG tube feeding at home

The family submitted that the judge’s overall analysis of RW’s best interests was flawed.

The Court of Appeal will only allow an appeal where the decision of the lower court is found to be either wrong in law or fact or the decision is unjust because of a serious procedural or other irregularity.

Sharp LJ emphasised that in sensitive and difficult cases such as this the Appeal Court should be slow to conclude that a best interest’s decision taken at first instance was wrong if the judge has directed themselves correctly as to the law (as per Aintree v James [2013] UKSC 67 para 42].

The Appeal Court concluded that Parker J had correctly directed herself as to the law when determining RW’s best interests. In particular she had (in accordance with s.4 (6)(a) and (b) of the Mental Capacity Act 2005) identified the importance of attempting to ascertain what RW’s wishes and feelings would have been. She reminded herself that, in the absence of sufficient evidence, it is wrong to speculate as to what RW would have wished or wanted. Parker J had found no express indication by RW, at a time when he had capacity, of what his wishes as to continuation of CANH would have been in the circumstances that he now found himself in. She had, as required by s.4 (7) MCA 2005, also taken into account the views of RW’s family about his outlook on life, the fact that he was a public spirited person with strong opinions but that did not provide clear evidence of what RW’s views and wishes would have been.

Jackson LJ, offered the following words of caution:

As a society, we rightly treat life as precious, but the ultimate purpose of our existence cannot be to live as long as we possibly can, regardless of suffering and indignity. Even for those who see illness and death as a battle, the true mark of a ‘fighter’ will sometimes be the courage to accept that treatment can no longer bring benefits. Where a person cannot speak for himself, his family members and carers are often an invaluable source of information about his values and his best interests. At the same time, the illness of a loved one is a harrowing experience for the relatives themselves. It is important that the strength and conviction of their views is not allowed to detract from a steady appreciation of the welfare of the individual concerned.

In considering whether Parker J had taken the correct approach, Jackson LJ concluded:

I do not accept that she gave inadequate weight to the wishes and feelings, beliefs and values of RW. She carefully considered the views of his sons, but she did not translate these into a requirement for treatment that was medically inappropriate. This was a conclusion she was fully entitled to reach on the evidence before her.

The Appeal Court was also satisfied that Parker J had carefully considered the risks associated with NG tube feeding at home and whether those risks could be managed by the family. She had concluded that ‘[the sons’] commitment is wholly commendable. However, their proposed regime is untried and untested and many things could go wrong’.

Permission to appeal was refused. The order of Parker J that it was in RW’s best interests for CANH to be withdrawn stood.

Comment

This case demonstrates the high threshold that needs to be overcome in order to successfully challenge a decision made by a judge at first instance as to best interests, especially where there is no finding that the judge misdirected themselves as to the law.

It seems ironic that despite all parties having been in agreement that it was in RW’s best interests to be discharged home (the family stated in evidence that RW strongly disliked being in hospital), the dispute between the family and the Trust resulted in RW being in hospital for months longer than necessary.

The other irony, which was not lost on Sharp LJ, was that were RW to be discharged home with an NG tube in situ the tube would need to be replaced in hospital every 4-6 weeks even if it hadn’t become dislodged. There was, she said, no evidence that hospital clinicians would be willing to replace it. The court cannot compel clinicians to treat a patient contrary to clinical judgment. It was felt unlikely that the family would actually bring RW back into hospital given the history. Sharp LJ therefore doubted that the family’s preferred option could ever have been achieved in practice.

KATHRYN RIDDELL

Partner in Sintons Healthcare Team

If you have any questions or require any advice on the issues discussed in this article please contact Kathryn Riddell on: (0191) 2267829 or kathryn.riddell@sintons.co.uk


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