By Jenny Kitzinger and Celia Kitzinger, 10th December 2021
UPDATE 13th December 2021: At this hearing it was stated – and we reported – that the patient was in a “prolonged disorder of consciousness” . In fact, (blog to follow) it transpired that was NOT the case. She has a brain injury but is NOT in a prolonged disorder of consciousness.
Life-sustaining treatment has been withdrawn from a woman in her late 70s, described as being in a prolonged disorder of consciousness.
The naso-gastric tube that was placed on or about 23rd October 2021, which provided her with nutrition, was removed about four weeks ago. She is receiving only hydration (with dextrose and saline) via an IV line.
Her son and daughter have opposed withdrawal of the feeding tube from the moment they were told about it.
The case was heard for the first time in the Court of Protection on the urgent hearings list before Mrs Justice Arbuthnot on Thursday 9th December 2021. We understand that the application was filed the day before (on the evening of 8thDecember 2021). The hearing started shortly after 3.30pm the following day. This shows the speed and efficiency with which urgent cases can be addressed by the court.
The application was brought by the patient’s son, represented by Katie Gollop QC
The person at the centre of the case (Mrs W) was represented by Conrad Hallin, via the Official Solicitor.
The Trust (London North West University Healthcare NHS Trust) was represented by Eloise Power.
Due to the urgency with which this case was heard, only the applicant had prepared a written position statement. Counsel for the Trust said she’d only received her first instruction at 12.45pm, less than three hours before the hearing began.
Facts of the case
Counsel for the applicant summarised what is known of the facts so far.
The patient’s son and daughter had been asked to agree to the insertion of the naso-gastric tube (on about 23rd October 2021) but had not been consulted about its removal. They say they’d not been told about the removal of the tube in advance, or asked what their mother would want.
The son and daughter are people who in the words of the Mental Capacity Act 2005 (s. 4(7)(b)) are ‘engaged in caring for the person or interested in his welfare” and as such their views about what the person would want, and what is in their best interests, must be “taken into account if it is practicable and appropriate to consult them”.
They say that they were informed on 11th November 2021 that the naso-gastric tube had been removed by the hospital. They informed the Trust that they objected to the removal of the tube and asked that it be reinserted. They were told that the Trust would obtain a second opinion – but no written opinion has been provided to them.
On 12th November they sent an email to the Trust stating their objections to removal of the naso-gastric tube. They reminded the Trust that they hold a health and welfare Lasting Power of Attorney and requested a meeting and information.
They reiterated that concern about the Trust’s decision to withdraw nutrition on 15th November (again in writing) and had a meeting with doctors on 23rd November at which they were told that the tube would not be reinserted and that life-expectancy was a matter of days.
On 25th November they had a second meeting with doctors and were told that other treatments had also been withdrawn and that a DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) notice had been in place at least since October 2021.
At a further meeting on 7th December, no agreement was reached about artificial nutrition. The Trust’s position was that they would not provide it. Mrs W’s attorneys stated clearly that withholding this treatment was against their mother’s wishes and not in her best interests and that they objected to it – and also that the DNACPR was contrary to their mother’s wishes.
Lasting Power of Attorney
The patient’s son and daughter are not simply ‘family members’ (or ‘next of kin’). They are her health and welfare attorneys.
Contrary to popular belief, family members and next of kin do not have decision-making rights in relation to an incapacitated person’s medical treatments. Doctors should consult them, but decision-making responsibility lies with those professionals responsible for delivering treatment, or with overall responsibility for a person’s care.
But in this case, Mrs W had specifically appointed her son and daughter as her joint health and welfare attorneys. This means they are the people she gave the legal right to make decisions about her health and welfare. They cannot, of course, determine what treatment she is given, but they can consent, or refuse to consent, to what is offered.
The Office of the Public Guardian (OPG) has published a guide to making and registering power of attorney (click here). It tells people:
“An LPA is a legal document that lets you (the ‘donor’) choose trusted people (‘attorneys’) to make financial decisions or health and care decisions on your behalf.”
It explains that attorneys can only make decisions for you when you don’t have mental capacity and continues:
“One very important decision has its own section in a health and care LPA. You can choose whether your attorneys or your doctors should make decisions about accepting or refusing medical treatment to keep you alive, if you can’t make or understand that decision yourself.”
There’s a whole section dealing with life sustaining treatment in the OPG guide. Here are three short extracts:
You have two options:
option A – I give my attorneys authority to give or refuse
consent to life-sustaining treatment on my behalf
option B – I do not give my attorneys authority to give or refuse
consent to life-sustaining treatment on my behalf
Sign only one option.
Life-sustaining treatment: definition
‘Life-sustaining treatment’ means care, surgery, medicine or other help from doctors that’s needed to keep someone alive.
Life-sustaining treatment can include:
a serious operation, such as heart bypass surgery
chemotherapy, radiotherapy or another cancer treatment
an organ transplant
artificial nutrition or hydration (food or water given other than by mouth)
Life-sustaining treatment: instructions (optional)
You can write instructions in section 7 of the LPA form to specify medical conditions where your attorneys must or must not consent to life-sustaining treatment on your behalf.
In this case, Mrs W had signed the box to say that she did give her attorneys authority to give or refuse consent to life-sustaining treatment (including clinically assisted nutrition and hydration) and she had written as follows:
“I want to live and you must fight to help me live. As a Christian, my faith is very important to me…”
The documentation for Mrs W’s Lasting Power of Attorney was before the court. It had been registered with the OPG on 18thJanuary 2020 and nobody raised concerns about its validity.
This means that – up to the point at which the matter came before the court – it was the son and daughter, as the jointly appointed health and welfare attorneys, who were the nominated “decision-makers”.
It was up to the attorneys to make decisions in Mrs W’s best interests as to whether or not life-sustaining treatments that clinicians are willing to make available to Mrs W are consented to or refused.
The law on withdrawing treatment from PDOC patients
Since the Supreme Court case of An NHS Trust v Y and another  UKSC 46, it is not mandatory to bring cases to court before withdrawing clinically assisted nutrition or hydration from patients in prolonged disorders of consciousness (PDOC), if certain safeguards are followed.
These safeguards include proper compliance with professional guidance and a second opinion from a senior independent clinician. When it is apparent that there is “a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made”.
In this case, it appears that no second opinion had been obtained (or at least the family do not know of it).
The family say that communication with the Trust is extremely difficult. They don’t feel they’re being provided with the information they need or are entitled to. They don’t feel consulted or properly involved in the decision-making process.
They feel strongly that as the Trust knew there was a lack of agreement between the attorneys and the clinicians as to P’s best interests in relation to continuing clinically assisted nutrition, the Trust should have brought the dispute to court.
The applicant’s position (Katie Gollop QC)
Counsel for the son asked the court to “hold the ring” by making an interim declaration that it is lawful and in Mrs W’s best interests for her to be provided with nutrition and hydration and all other medical treatment necessary to life. The son also wanted the DNACPR removed (again on an interim basis), disclosure of medical records, and an independent second opinion from an expert.
The Trust’s position (Eloise Power)
Counsel for the Trust had been instructed to offer “a sincere apology in open court to Mrs W and to her family”. She apologised first that the views of the family members/attorneys “were not fully elicited prior to removal of the naso-gastric tube” and second “that an application to the Court of Protection was not made”.
She said that reinsertion of the naso-gastric tube might seem “at first blush” the “obvious” solution – but that reinsertion now “carries some significant risks” (such as aspiration). She asked for medical evidence to be sought as soon as possible as to the benefits and burdens of naso-gastric feeding “before intervention which could lead to the immediate death of Mrs W”.
The judge said, “I am most dismayed by the poor communication that there has been between the hospital and Mrs W’s children. I will in due course need a full explanation of what has gone on in relation to that. I say no more than that now.” Counsel for the Trust agreed that “this is an aspect of the case that merits full disclosure”.
Finally, she said that clinicians are not willing to perform cardiopulmonary resuscitation on Mrs W “and so this is not a measure for an interim declaration”. We assume she meant by this that CPR is not a treatment that would be clinically indicated for Mrs W, because the court cannot order doctors to give treatments that they consider clinically inappropriate.
The Official Solicitor’s position (Conrad Hallin)
Counsel for the OS sounded frustrated at the lack of information available in this case and said “we are largely in the dark as to the circumstances on the ground”. He raised the question as to Mrs W’s diagnosis and prognosis. He was concerned that the issue of feeding wasn’t straightforward “as we don’t know how long she may survive without nutrition. We don’t know what the extent of the [risk of] aspiration is if the naso-gastric tube is reinserted.”
He pointed out that there is a question mark as to whether or not the DNACPR order falls within the remit of the Court of Protection depending on the basis on which it’s imposed – but in any event there is a duty to consult family, following Tracey “and that doesn’t appear to have been done, which is obviously very disappointing”. He conceded that “it may not be a best interests decision if CPR is not clinically indicated, but I want clarity on that”.
Counsel for the applicant said she wanted to say one thing about the past before moving on to consider future actions.
She said it was “astonishing and deeply troubling that for four weeks until today, a patient in this country in 2021 has been deprived of nutrition without their nearest and dearest being consulted. This calls for a Serious Untoward Incident investigation…. If Mrs W had died in the last four weeks, the family would have been looking at an inquest with the potential of an investigation for manslaughter. This should never have happened.”
Katie Gollop QC then reported an email from her instructing solicitor which identified a doctor within the Trust who had very recently (presumably in response to this court action?) completed an assessment of Mrs W and read some of Mrs W’s medical records. She also reported that an independent expert, Dr Chris Danbury, Consultant in Anaesthetics and Intensive Care could be available next week to provide an independent expert report – but not until Tuesday. She pointed out that he was eminently qualified to be an expert in this case as he had been a member of the core group that authored the Guidelines on “Clinically Assisted Nutrition and Hydration (CANH) and Adults who lack the capacity to consent” (produced by the British Medical Association and the Royal College of Physicians and endorsed by the General Medical Council).
The judge suggested a break of 45 minutes (it actually extended to nearly two hours) to discuss the way forward.
On return to court (now close to 6pm), it was reported that Dr Danbury was able to rearrange his appointments and provide the report on Monday morning – on condition he receives all the medical records, including imaging, tomorrow (i.e. Friday).
The Trust, however, had not been sure he was the right expert because “he’s an intensivist. She’s being treated by geriatricians and we would prefer the discipline of expertise to be the same as the treating clinicians”. On checking her emails during the course of the hearing, however, she returned to this matter “with trepidation” because “none of the experts whose names have been suggested by the Trust are available, so I’m in the unpalatable position of not being able to offer you the name of a geriatrician on a plate”.
Given that Dr Danbury was seen by the other parties as “an extremely good expert” and was “heartily recommended” by Counsel for the Official Solicitor, the judge approved Dr Danbury as expert without delay. The plan is that he produces his report by 10am on Monday morning so that the hearing (a directions hearing) can take place on Monday afternoon (listed for “not before 2pm”).
Counsel for the son asked the Trust to take over as applicant “so the family can concentrate on being family” (the Trust was “amenable” to that), and to pay the family’s costs, given the “close to unprecedented circumstances of this case”. The judge was nodding at this.
The judge stated, firmly: “I’m afraid they brought it upon themselves by this behaviour. That’s what happens when communication breaks down. And that’s putting it politely”.
She ended the hearing (just before 6.30pm) by sending her best wishes to the family.
There are several questions raised by this case raises that may be clarified on Monday.
- The first is the nature of the decision. It was unclear to us, and indeed to the Official Solicitor, whether the decisions about this patient are ‘best interests’ decisions or whether, quite simply, treatments such as CANH and CPR are no longer on offer – and so not available as options for the attorneys to consent to or to refuse.
- The second is the question of the clinical care put into assessing this patient – one issue raised in the hearing was whether reversable causes of her condition had been adequately addressed.
- The third issue, not yet explored, is the guidelines that would apply for this patient. The Guidance on CANH (of which Dr Danbury was one of the authors) does not cover patients for whom CANH is not clinically indicated, patients expected to die within hours or days, or patients for whom a decision to stop CANH is part of a broader decision about life-sustaining treatment. The case of Re Y (referenced in court) concerned a sudden-onset brain injury and PDOC in a previously capacitous and healthy patient, and the guidance was largely drawn up in response to that case. For such patients the appropriate guidance is laid out in Part 2, Chapter 5 of the Guidance. The Guidance offers different recommendations for patients in PDOC with neuro-degenerative conditions (Part 2, Chapter 3) and those who have co-morbidities or frailties likely to shorten life expectancy, along with PDOC following brain injury (Part 2, Chapter 4). We simply didn’t have medical information about MW’s condition to know which part of the Guidance should be consulted in her case.
Regardless of the answer to the issues outlined above it was clear those in court were very troubled by what seems to have been very poor communication. There appears to have been a failure to consult with, or even inform, Mrs W’s family, of certain decisions (eg DNACPR for example or CANH withdrawal). The Trust’s offer to make documents about family meetings available and to conduct their own review may bring clarity to this issue.
Most fundamentally, however, and what is most troubling about this case for both of us, is an apparent disregard for the fact that the patient has a son and daughter who she designated as her health and welfare attorneys. She assigned them authority over consenting or refusing consent to life-sustaining decisions, and backed this up with a statement of preferences (or instruction) on the form appointing them.
If life-sustaining treatments were on offer, then the decision-makers were the son and daughter, NOT the clinicians – and it was up to them to make the decision as to whether it was in her best interests to continue with CANH or not.
For us this is a key point. We are sisters who work in the area of prolonged disorders of consciousness because our sister, Polly Kitzinger, suffered a catastrophic brain injury, following which doctors refused repeatedly over months and years to listen to and take seriously family views of what Polly would have wanted in this situation (see “Doctors wouldn’t let my sister die”).
Following that experience, both of us (Celia and Jenny), our two other sisters, parents, partners and many of our friends have appointed people we trust as our health and welfare attorneys (and we’ve also written Advance Decisions and Advance Statements). We did this because we wanted to give best interests decision-making authority (on issues not covered by our Advance Decisions) to someone who knows us and whom we trust to represent our wishes. It’s dismaying to consider that medical professionals might simply ignore our health and welfare attorneys.
Drawing up and processing such paperwork takes considerable forethought and effort (and a Lasting Power of Attorney incurs a registration fee). In our family, we felt compelled to do this because we wanted to be sure that what doctors did to Polly could not be done to any of us – where the routines of hospitals, assumptions of clinical teams, and indeed, the way the law operated at the time, meant Polly’s own wishes and values were over-ruled.
In the case of the woman in this urgent hearing, it seems clear from the quoted wording on her form that she appointed her children as health and welfare attorneys to try to ensure that her strong religious perspective and ‘pro-life’ views would be taken into account. Presumably she believes that the children she chose as her attorneys will understand her perspective better than her doctors, and will be able to act in accordance with that. And yet the role she assigned to them, in a legal document, has apparently been ignored.
There’s a proviso here. It’s possible that clinicians are no longer willing to offer CANH because they consider it clinically counter-indicated. That would mean that it’s not an available treatment to which the attorneys can give consent. The attorneys cannot determine what treatments she is given: they can only consent, or refuse to consent, to what is offered. It was very unclear in court whether or not CANH was, or is, in fact a clinical option for this patient – and so equally unclear as whether or not a best interests decision by the court was possible now, or whether a best interests decision had been possible previously for the attorneys. Either way, the attorneys should undoubtedly have been consulted and informed about their mother’s treatment.
Decision-making responsibility about Mrs W’s best interests has now passed from her attorneys (who seem to have been prevented from exercising it) to the court.
We will be following the case on Monday 13th December 2021 with interest.
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 University. She is co-director (with Professor Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre and co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia