Social Welfare Update: Court of Protection - Best interests decisions in respect of a person suffering from end stage dementia

Tuesday 23 April 2019

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These cases concern the end of life treatment and care of RW, a man in his late seventies, who was suffering from end stage vascular dementia. They deal with issues that may arise (although not necessarily in precisely the same way) in relation to many individuals suffering advanced dementia and their families striving to do the right thing for their loved one.

The principles in Aintree are at the fore in the court’s decisions and close attention paid to whether RW’s wishes and feelings could be ascertained, and where ascertainable, the weight to be accorded to them. The decisions confirm the principle of the sanctity of life as a strong but not an absolute principle.

The decision on continuation of clinically assisted nutrition and hydration on RW's discharge from hospital (PW v (1) Chelsea and Westminster Hospital NHS Foundation Trust (2) RW)

The first set of proceedings concerned a dispute between the NHS Trust and RW’s sons as to the continued provision of clinically assisted nutrition and hydration (CANH) for RW via a nasogastric (NG) tube upon his discharge home from hospital. The clinicians’ opinion was that on his discharge home from hospital the NG tube should not remain in place, and that NG tube feeding was neither clinically appropriate nor in RW’s best interests from their perspective as clinicians. They referred to relevant clinical guidance on CANH from NICE and the GMC. The family’s view was that the NG tube should not be withdrawn and CANH via NG tube should continue at home. The community team would be unable to provide any care in respect of the CANH. The family proposed to provide 24-hour care and had some experience of tube feeding. In April 2018, Parker J decided that it was not in RW’s best interests that CANH be continued upon his discharge home. That decision was the subject of the application to the Court of Appeal for permission to appeal. 

It was argued on the application for permission to appeal that the judge failed to appreciate and therefore give any or any adequate weight to RW’s wishes and feelings and that she overstated the risk that having the NG tube in place would pose for RW at home and the burden this would place on him. 

The Court of Appeal refused permission to appeal. It emphasised that an appellate court should be slow to conclude in a difficult and sensitive case that the judge below was wrong. Having set out the legal framework (paragraphs 41-48) it was held (paragraph 51) that the judge’s approach to the law had been correct: she had identified the two fundamental principles engaged namely the principles of sanctity of life and the right of self-determination; she had identified that the sanctity of life was a strong but not an absolute principle, she had approached the issue of RW’s welfare in accordance with the guidance given in Aintree at para 39; she further identified the importance of attempting to ascertain what RW’s wishes and feelings would have been and reminded herself that in the absence of sufficient evidence, it was wrong to speculate as to what the person lacking capacity would have wished or wanted; she adopted a balance sheet approach whilst at the same time reminding herself that this should be used as a route to judgment and was not a substitute for the judgment itself. She had concluded that the evidence as to RW’s wishes and feelings and beliefs did not establish what his beliefs as to the withdrawal of treatment would likely have been, and that was a view she was entitled to reach (para 53). She had not erred in her consideration of the evidence as to discomfort, pain and risks associated with the NG tube feeding.

It is important to note that the Court of Appeal identified that it was not clear that it would have been possible to maintain NG nutrition and hydration outside hospital in any event. This was because the tube would need to be replaced at regular intervals and there was no evidence that any doctor or hospital would be prepared to replace or re-site the tube. No doctor could be ordered to provide the treatment and whether such treatment was clinically indicated would depend on RW’s medical condition at the time. 
It was held that the appellant was wise to abandon a contention that above a minimally conscious state the sanctity of life should absolutely prevail regardless of other balance sheet considerations, unless there was very clear and cogent evidence that P himself would have wished to have CANH withdrawn, Peter Jackson LJ holding that the framework for the assessment of best interests is a universal framework, regardless of diagnosis (paragraph 96). 

Refusal to lift reporting restrictions

Further, the Court of Appeal refused permission to appeal against Parker J’s decision that reporting restrictions should not be lifted to disclose the names of RW, the family and one of the clinicians, Dr L1. There was no dependable evidence that RW would want his most private information identified to the world at large and any grievances expressed by his sons were theirs, not his.

The decision whether, following re-admission to hospital, RW should be discharged to go home to die (Hounslow CCG v RW) 

Following his discharge home, RW was cared for by one of his sons, PT. PT provided nutrition and hydration by any means he could (small syringes of water, moist trifles, soft custard tarts), with the aim of keeping RW alive. RW survived a lot longer than had been expected. However, his condition deteriorated. RW’s leg became nectrotic. He suffered significant pressure ulcers and it became almost impossible to manage catheter care. The CCG brought the matter back before the court, before Knowles J on 22 March 2019, by which time RW’s left leg had detached completely. It was later learned that PT had wrapped it in cling film and put it in the freezer. Knowles J decided that RW should be removed to hospital immediately. Following RW’s re-admission to hospital, the determination that fell to be made was as to the most appropriate end of life care plan for RW. Hayden J endorsed the CCG’s end of life care plan for RW. RW required morphine. Artificial nutrition and hydration would not be meaningful and would not be part of the plan. Hayden J held that there was no doubt that RW would have wanted to die at home, and he would have been prepared to decide that the risk that RW would not survive the transition home to be taken. However he refused a return home because if RW went home PT would attempt to feed his father, giving rise to a real risk that he would asphyxiate and RW should not be exposed to the risk of his life ending in this way. Therefore, Hayden J held that RW should remain in hospital and have his sons with him as much as possible. He held that PT had done his best for his father but there was nothing more that could be done. 

Read the full judgments here:

Bethan Harris is a member of the Garden Court Chambers Court of Protection team.

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