Case study: debate over severity of dementia in the Court of Protection
Our Court of Protection team recently represented the family of a woman who was given a prognosis of palliative care by a hospital, which her family disagreed with.
Mrs P was diagnosed with Lewy Body dementia, a type of progressive dementia which affects thinking, visual perception and movement, in 2016. Despite her diagnosis, Mrs P was happy living at home, spending her days completing the crossword, going for walks and watching TV. She received some support from her family.
In November 2020, Mrs P was admitted to hospital with an infection. Doctors prescribed antibiotics, which didn’t help, and so she had an operation that same month to remove gall stones.
During her recovery, which was going well, Mrs P unfortunately contracted Covid-19 in the hospital, and she needed oxygen. In early December, the hospital planned on making arrangements for her to return home to recover, however, her NG feeding tube was taken out, possibly by Mrs P accidentally.
The hospital’s plan for care
The hospital Trust took the view that Mrs P lacked capacity to make any decisions around her care herself, and that replacing the feeding tube was not in her best interests as she had ‘severe’ dementia, in line with NICE guidelines. Hospital staff subsequently made plans to put Mrs P on palliative care, which could be done in the comfort of her own home.
The family’s view
Mrs P’s family strongly disagreed with the Trust’s decision, and wanted her to have a temporary NG feeding tube, followed by a PEG or RIG tube, which allows for more long term feeding and then discharged home.
As the two parties could not agree on the best way forward, the family instructed our Court of Protection solicitors to represent them during a mediation meeting and in subsequent court proceedings.
Court of Protection hearing
During an urgent hearing in the Court of Protection in January 2021, numerous issues were discussed around Mrs P’s mental capacity and her care plan going forward.
Power of Attorney
Mrs’ P had appointed her husband as an Attorney for her health and welfare, with specific power to consent to life-sustaining treatment, and so one of the most prominent debates was whether Mr P had a definitive say in this situation.
Mr P “firmly” wished for his wife to receive clinically assisted nutrition and hydration, and to have a chance at recovery.
The Court of Protection found against this, but placed great weight on his view as Attorney.
We await further details from the Court as to why the they did not accept the Attorney’s ‘power’ as decisive, however, it’s important to note that it was not discounted and remains incredibly important when considering a person’s intentions and later life planning.
Severity of the dementia
The NHS Trust (and the entire treating team at the hospital) deemed Mrs P’s dementia as ‘severe’, whereas the family maintained that it was ‘moderate’. The family had, after all, supported Mrs P for the last four years since her diagnosis, and were familiar with her state of mind.
The difference between the levels of severity was important here, as NICE guidelines state that it would not generally be in the best interests of a patient with ‘severe’ dementia to have a PEG feeding tube inserted. In this case, the bigger picture was that it was the difference between palliative care, where Mrs P would pass away within days/weeks and recovery, or at least further weeks/months of life.
The Official Solicitor said that the Trust may not be right about ‘severe’ dementia and that Mrs P’s current presentation is heavily influenced by her recent illness, including Covid-19. He felt that some recovery was possible and requested that an independent medical expert should be instructed to determine the severity of Mrs P’s dementia.
The following day, the judge ruled that nutrition and hydration should be reinstated, initially via the NG tube and then by an alternative. She said that the family’s view seemed “reasonable” and that there was uncertainty over the diagnosis of ‘severe’ dementia.
The judge also placed “considerable weight” on her Attorney’s view that she should be given a chance to recover.
Although the judgement ruled in the family’s favour, the court emphasised that the clinical team had been “heroes” in facilitating care for Mrs P, as well as family contact during the Covid-19 pandemic, and that they should in no way be criticised for coming to the decision they did.
This was an emotional time for Mrs P’s family, and a difficult debate to have. Although the Court of Protection did view Mrs P’s Lasting Power of Attorney at the end of the matter, it’s important to note that it was considered alongside other evidence and views.
The law specifically lists Attorneys as people to be listened to. In this case, the Lasting Power of Attorney, and particularly Mrs P’s desire to have her husband make decisions in relation to end of life care, was the only real evidence of Mrs P’s wishes as to what should happen and who should be listened to in this scenario.