Invasive naso-gastric feeding not in the best interests of dementia patient

Pain is common in patients with advanced dementia and the medical research and guidance literature indicates that this is often under-detected and under-treated.

RW had been cared for by his sons at home until September 2017, when he was admitted to a hospital and was acutely ill. A nasogastric (NG) tube to provide clinically assisted nutrition and hydration (CANH) was inserted as part of his treatment. By late November he remained intubated but was ready for discharge as he was clinically stable and had no active infection, but disagreement between the trust and his sons prevented it. It was agreed that RW could be discharged into his sons’ care, had he not needed a NG tube. But the Clinical Commissioning Group (CCG) said it could not provide care in respect of CANH or the NG tube. The issue was solely whether, as the trust contended, he should be discharged home for palliative care and oral comfort feeding only, having had the NG tube removed before discharge, or with the tube in place, as the sons contended.

In April 2018 a Court of Protection judge, having heard evidence from RW’s treating clinician, his family, the CCG, the Official Solicitor and an independent medical expert, decided that it was in RW’s best interests to have the NG tube removed and return home for palliative care only. She took into account the fact that if RW were to be discharged with an NG tube in place, as the sons wished, it would become regularly dislodged requiring his regular return to hospital for its replacement, which would be “highly burdensome” to him. Being discharged home with an NG tube was therefore not an “acceptable or appropriate treatment course for RW”.

Against the sons’ wishes, the judge also maintained a transparency order preventing the publication of the names of RW, his family and the treating clinicians.

The applicant (one of the sons) submitted, in relation to the best interests decision, that the judge had erred in her appraisal of the evidence and the weight she had given to some of the factors, particularly RW’s wishes. These were, contrary to the judge’s findings, ascertainable; they pointed to the fact that he was a “fighter”, to the value he ascribed to life and to his desire to “hold fast to it” no matter how “poor” or “vestigial” in nature it was.

In relation to the transparency order, the applicant argued that the COP judge had failed to consider RW’s likely views when determining whether his name should be made public, and that he would have wanted to be named.

The independent medical expert told the court that 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.

Permission to appeal was refused.

Reasoning behind the decision 

An appellate court could only interfere in a best interests decision if it was satisfied that the decision was wrong.  In sensitive and difficult cases, like the instant case, an appellate court should be very slow to conclude that the judge was wrong  (Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 ). The judge had identified the two fundamental principles engaged to be the principles of sanctity of life and the right of self-determination. She had been entitled to conclude that the evidence did not establish what RW’s beliefs as to the withdrawal of treatment would likely have been. She had given careful consideration to the risks associated with oral feeding, and to the effect of the care the family could provide at home on the risk of the NG tube being dislodged or removed. It had been open to her to conclude that the sons’ plan for RW to return home with the NG tube in place was untried and untested and many things could go wrong. The judge had not even arguably fallen into error. Even taking into account RW’s religious convictions, there was no suggestion from the evidence that his spiritual or religious beliefs were such that he would have been opposed to the withdrawal of CANH on such grounds.

As to the transparency order, the Court of Appeal would not interfere unless the judge had erred in principle or reached a conclusion that was plainly wrong, particularly where she had seen and heard from those most closely involved and would inevitably have a much better feel for the dynamics of such a sensitive and difficult situation. In such cases, the balance between Article 8 and  Article 10 of the European Convention would normally tip in favour of protecting the identity of the individual concerned. The judge had been conscious that there was a public interest in withdrawal of medical treatment from people with end stage dementia, particularly when families and clinicians could not agree, but there was nothing in her order that prevented the particular features of RW’s case or any wider issues from being aired on an anonymous basis.

Individuals and families coming before the Court of Protection often in extreme circumstances should not have the further worry that they were likely to be identified to the public at large. RW’s sons said that he would want information about himself and his dementia put in the public domain, largely so that alleged shortcomings in his treatment could be publicised to the greatest effect. However, there was no dependable evidence that RW would want his most private information to be identified to the world at large, and any grievances expressed by his sons, which found no support in the judge’s decision, were theirs not his. There were no arguable grounds for interfering with the decision.