Patient dies in hospital as Trust fails to comply with Mental Capacity Act 2005

By Jenny Kitzinger and Celia Kitzinger, 29th December 2021

This hearing (COP 13861502) on 13th December 2021 before Sir Andrew McFarlane, President of the Family Division, concerned the failure of London North West University Healthcare NHS Trust to comply with the requirements of the Mental Capacity Act 2005 in relation to the care of a brain-injured woman in her 70s, Mrs W[i]. It was the second hearing in this case, the first one having taken place on 9th December 2021.

The dispute at the centre of the case began when clinicians removed Mrs W’s nasogastric tube on 10th November 2021 without any consultation with her health and welfare attorneys (one of her sons and one of her daughters).

When the health and welfare attorneys were informed the following day, they said that they considered it would be in their mother’s best interests to receive nutrition, and repeatedly asked the Trust to reinstate it. 

The Trust continued to withhold nutrition from Mrs W, although they did provide hydration (with dextrose and saline) via an IV line.

Then, on 8th December 2021, they also withdrew artificial hydration, and only restarted it after representations made by solicitors representing one of the health and welfare attorneys.

Although the Trust knew that the attorneys did not agree with the decision to withhold nutrition (and hydration) from Mrs W, they did not make an application to the Court of Protection.

Mrs W’s son was forced to obtain legal aid and instruct solicitors to issue an application and bring the matter before the court on an emergency basis. It was first heard on the urgent hearings list before Mrs Justice Arbuthnot on Thursday 9th December 2021 (blogged earlier).

At the beginning of this second hearing (on 13th December 2021) we learned that Mrs W had died the previous evening.

Counsel for the Trust (Peter Mant of 39 Essex Chambers) offered the family his “deepest condolences”. 

The Trust assured the court and the family that they were taking this situation very seriously. They outlined the following steps:

  • They had put in place arrangements to undertake a full Serious Untoward Incident (SUI) investigation into the circumstances surrounding the withdrawal of Mrs W’s nasogastric tube on 10th November 2021.
  • They would refer Mrs W’s death to the coroner.
  • The Trust Board, including the Chief Executive and Medical Director had been informed about the case and were fully aware of the concerns that had been raised.
  • The outcome of the SUI (and any inquest if the coroner decides to hold one), including any recommendations arising out of the investigations, will be considered and acted upon at Board level.

The first hearing (9th December 2021)

We have given a detailed account of the hearing on 9th December 2021 before Mrs Justice Arbuthnot, in our earlier blog, which focuses particularly on the legal role of Mrs W’s son and daughter as her health and welfare attorneys. 

We also noted that the Trust had offered (as it says in the Order from the hearing) “a sincere apology in open court to Mrs W and to her family”. 

They apologised for two errors: first, that the views of the family members/attorneys “were not fully elicited prior to removal of the nasogastric tube”; and, second ,“that an application to the Court of Protection was not made”. 

At that hearing it was agreed that the Trust would ensure that no further medical treatment – including hydration – was withdrawn from Mrs W while the Court was seized of the matter (i.e. retained jurisdiction over the case).

The judge also declared that Mrs W lacked capacity to conduct proceedings or to make decisions about her treatment, and appointed the Official Solicitor to represent her best interests (taking over at this point from her attorneys). 

The Trust agreed to take over the role of applicant for the next hearing, with the Official Solicitor as first respondent, and Mrs W’s son as second respondent.

The court appointed an independent expert, consultant intensivist Dr Chris Danbury, to prepare a report on Mrs W’s nutrition, diagnosis, condition, prognosis and treatment options and to provide the report to all parties by 10am on 13thDecember 2021, the date of the next hearing.

The second hearing at 2.00pm on 13th December 2021

The hearing opened with a brief summary of events so far from Peter Mant (counsel for the Trust). He covered the events summarised above, and also the upshot of the report that had been received from Dr Chris Danbury, the independent expert. 

This answered some of the questions we’d been left with after the hearing on 9th December about Mrs W’s condition and the nature of the clinical options available.

According to Peter Mant, Dr Chris Danbury had reported that Mrs W was not in a prolonged disorder of consciousness (a diagnostic term erroneously applied to her in the hearing the previous week). She was stable, when he saw her, and although she was in the end stages of her life, and prediction is difficult, he had given her a prognosis of weeks or maybe even months. He had recommended reinstating the nasogastric tube, and then inserting a PEG, with a view to developing a care package that would enable her to spend her remaining time in the comfort of her own home (presumably an option her LPAs supported and believed that Mrs W herself would have wanted). 

Sadly, she had then died the following evening in hospital.

The judge said that this was a profoundly sad time for the family, who had also lost their father less than two weeks earlier. 

The judge pointed out that the jurisdiction of the court comes to an end with the death of the patient, but that the hearing was proceeding, despite Mrs W’s death, “because of the need for some investigation into what happened”. 

The family, said Katie Gollop QC on behalf of Mrs W’s son, take some comfort from the fact that this hearing is happening and that “other people, at a very high level are taking an interest”. Mrs W’s daughter, she said, had told her she “will never get over how her mother died”. 

Peter Mant acknowledged the concerns and ran through the steps the Trust was taking in response (as outlined above, i.e. the Serious Untoward Incident investigation etc). Obviously, he said, “apologies and expressions of regret can provide only limited comfort to the family. We will make inquiries and will act on the findings of the investigation and make any changes necessary”. 

The judge commented that statements from the patient’s son and daughter would be “a positive help to the investigation” because they approached what had happened “in a measured way, with insight and intelligence about the issues involved”. 

Not just a one off?

It was clear that the family wanted the investigation to go beyond what happened to Mrs W to consider wider practices. Katie Gollop QC said the family “feel other people are in danger” and this possibility was certainly recognised as worthy of investigation by the judge and by the Official Solicitor.

There’s a concern”, said the judge, “on reading the papers, that the family are right that this may not be a ‘one-off’. The procedure [followed by the consultant in Mrs W’s case] may be seen as entirely in accordance with their ordinary practice. Having read the statement of the consultant, there wasn’t any indication that what was undertaken was in any way out of the ordinary.”  

Conrad Hallin (representing Mrs W via the Official Solicitor) said: “The Trust will investigate this incident, but it’s hard to accept that if this approach was taken to this case, there may not be other cases to which a similar approach was taken”.

The judge said, “there is a legitimate concern that this has happened, or could happen, to other patients. I anticipate that the NHS Trust will be very alive to that”. 

In particular, the Trust seemed completely to have ignored the role of the health and welfare attorneys, who were Mrs W’s ‘decision-makers’ by law.

Katie Gollop QC: There’s little point people making Lasting Powers of Attorney if they have no traction at all. There was no mention of the Lasting Powers of Attorney at all in the doctor’s statement.

Judge: I am being measured in what I say, but I had been struck by that.

The judge later reflected on the need to investigate “how a lasting power of attorney is acknowledged by the hospital and proper respect given to the decision-making role of those who have a power of attorney in their favour”.

As so often in these cases, there was mention of “lessons to be learned”. 

We hope that these “lessons” and the outcome of the inquiry more broadly will be made publicly available. 

“Requires Improvement”

According to the Care Quality Commission (CQC), London North West University Healthcare NHS Trust is one of the largest integrated care trusts in the country, bringing together hospitals and community services across Brent, Ealing and Harrow. It operates hospital services from three main hospital sites, as well as providing a range of community services in the three Boroughs. The trust employs more than 9,000 clinical and support staff and serves a diverse population of approximately one million people. 

This Trust has been rated by the CQC as “Requires Improvement” at each of the last two inspections, most recently in 2019. Comments included:

  • Training compliance rates for deprivation of liberty safeguards was poor among medical staff. Some staff had a variable understanding of the Mental Capacity Act (MCA) and deprivation of liberty safeguards (DoLS).
  • We found that some trust policies were out of date.
  • In reviewing trust documentation on risk, serious incident investigation, review of deaths, duty of candour, complaints etc. and action plans arising, we noted a general good standard of documentation but a continuing lack of certification of completion of improvement or sign off from actions identified in many cases.

This is concerning, since it seems likely that lack of understanding of the Mental Capacity Act, and possibly also out-of-date policies, may have contributed to the problems in Mrs W’s treatment. And if previous incidents and complaints have not led to “completion of improvement or sign off from actions identified”, this does not augur well for “lessons to be learnt” from this case.

The public has a right to know what went wrong in this case, and how the Trust proposes to avoid anything like this happening again. 

We will be seeking information from the Trust about the outcome of investigations and the improvements they are putting in place in the New Year. 

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Professor Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

Celia Kitzinger is Honorary Professor in the School of Law and Politics at Cardiff School of Law and Politics.  She also co-directs (with Professor Jenny Kitzinger) the Coma and Disorders of Consciousness Research Centre and (with Gill Loomes-Quinn) the Open Justice Court of Protection Project.  She tweets @KitzingerCelia

[i] At the family’s request, reporting restrictions on naming the people involved in this hearing were lifted. We are, therefore, permitted to name Mrs W and her family members. However, the family has not yet made any public statement about how Mrs W died or the concerns they had. We have therefore chosen not to identify Mrs W or her family here, in order to give the family the opportunity (after the funeral) to put this information into the public domain themselves if they wish to, in their own way. We will update this blog, with names and links to whatever the family say, at some point in the future or link to media or other public reports of the case if the family is named there.

Photo by Jacinta Christos from Unsplash

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