Alex RKIn VE v AO & Ors [2020] EWCOP 23, Lieven J was asked to determine whether it was in the best interests of a terminally ill woman to leave the care home where she was residing to move to live with her daughter and her family. The circumstances of the woman, AO, had been before the Court of Protection in 2010, at which point an order had been made to the effect that it was in her best interests to live in a care home, and to have staying contact with her daughter, VE. When AO was staying with VE over Christmas 2019 VE became concerned about her mother’s health and her swollen abdomen. She took AO to the GP who referred her to King’s College Hospital for a scan. She was diagnosed with advanced terminal ovarian cancer which had spread to her other vital organs. AO had stayed with VE for some six weeks over Christmas. She was admitted to King’s College Hospital (KCH) in mid-January 2020.
VE was very concerned about the care of her mother at the care home and applied for the 2010 order to be discharged and for AO to be allowed to move to live with her. On 6 March 2020, she issued an application for personal welfare orders in respect of her mother seeking AO’s discharge from hospital into her care. Within those proceedings VE issued a further application on 9 April 2020 and the proceedings were reconstituted as a s.21A Mental Capacity Act challenge to AO’s deprivation of liberty.
On 20 March 2020, an order was made to the effect that it was in AO’s best interests at that stage to be discharged back to the care home, with a further hearing listed to determine whether it was in her best interests to move to live with her daughter and family. It was on that same day that, in the light of the emerging COVID-19 pandemic, the Department of Health and Social Care produced guidance described by the judge as “preventing family members from visits to care homes except in exceptional situations such as end of life.”
AO was discharged to the care home on 23 March, and, as the judge described it:
Since that date she has not had any face to face contact with her family. TO, for very understandable reasons in the light of the current pandemic, is not allowing any visits from family members to residents. Some contact has been maintained by telephone calls and, on one occasion, a video call using a carer’s mobile phone but, given AO’s condition, this is not an effective way of maintaining contact with the family. There was some suggestion at the first hearing of AO using an iPad or similar device to maintain contact but, again, given her mental state, this was not a practical or effective solution in the longer term. Therefore, adequate contact could not be maintained at the present time between AO and her family, and this was accepted by all parties by the hearing of 20 April 2020.
Lieven J heard this matter on 16 April 2020 and ordered that further statements be produced for the second hearing (20 April 2020) and that the AO’s representative (Ms Hobey-Hamsher) speak with the manager of TO and produce a note of that conversation:
17. Ms Hobey-Hamsher talked both to the manager of TO and the staff member who has had the most contact with AO. In terms of AO’s condition, it seems that she is significantly more dependant than when she was admitted to Hospital. It was not clear the degree to which her condition had changed since she had returned to TO in March. There were slightly conflicting views as to how ill AO currently is. However, it appears that she is not yet entirely bed bound and she can communicate. There was also a somewhat unclear situation at the time of the hearing on 20 April 2020, by which Ms Hobey-Hamsher had been told that AO had a cough and was being isolated within the home.
18. The Manager told Ms Hobey-Hamsher that TO had not accepted any residents who had tested positive for Covid 19 and none of the existing residents had themselves tested positive. However, this is in the context where none of the existing residents were being tested. She said that there were residents who were showing symptoms which could indicate they had Covid 19 and they were being cared for in isolation. There were residents who had recently died who might have had the virus, but it was not possible for the carers to know given that they had not been tested for Covid 19. The Home is doing everything it can to prevent infections and to stop any spread within TO. TO is in lockdown with no outside visitors. Bio-security measures are being taken including handwashing, and separation/isolation of residents within the Home. It has to be said however that it is inevitably going to be extremely difficult to prevent spreading the disease within a home such as TO.
The court also had evidence before it from the CCG, from a Ms Clegg, in the following terms:
21. Ms Clegg gave oral evidence at the second hearing. She is an Associate Director of Integrated Commissioning within the South East London Clinical Commissioning Group (the CCG), previously the Lambeth Clinical Commissioning Group. The CCG had not assessed AO’s needs so necessarily what she said about care that could and would be provided to AO was in general rather than specific terms. She said that staff, such as district nurses, were still visiting people in their own home and that staff had access to Personal Protective Equipment (PPE) where appropriate. The service to those being looked after at home has not changed with the current pandemic, and in fact the CCG has commissioned additional capacity. In terms of the care that a district nurse would provide to AO, Ms Clegg said that there would be support for the family, ensuring that AO had the right equipment and any basic nursing care that AO needed at home. It was clear from Ms Clegg’s answers that there was no reason to believe that AO would not get appropriate support from the CCG if she went home. At the moment the only pain relief that AO is receiving is paracetamol and obviously that can be provided at home.
22. The other important area covered by Ms Clegg was the end of life care that AO would receive. Ms Clegg said that the CCG were very familiar with providing that type of care for people at home, including people lacking capacity. End of life care would be provided through St Christopher’s Hospice, and a community based palliative care service. Pain relief can be provided, as appropriate, through pain relief patches and subcutaneous infusion and the district nurses can set this up. The district nurse service is familiar with, and sensitive to, issues around the patient’s dignity towards the end of life including respecting cultural beliefs and privacy. Mr Paget asked Ms Clegg about the levels of support that could be provided, and Ms Clegg said that it was difficult to answer such questions without a full assessment. She initially said that an assessment would take 4-6 weeks, but it was quite clear from her evidence that if there was a need an assessment could be carried out more quickly. She said that she could not rule out the need for AO to be in a 24 hour residential setting at the end of her life, but said that could be left open as an option and the CCG would endeavour to do its best for her to remain at home.
Lieven J considered the case of BP v Surrey CC [2020] EWCOP 17,[1] in which Hayden J had found that the plans for BP to return to live at home, cared for by family members, was not in truth a realistic option, and therefore the consideration of the court focused on the issue of contact with the family. As Lieven J noted:
28. The principal factual difference from AO’s case to that of BP is that AO has been diagnosed as having terminal cancer and is likely to have something between a few weeks and 3-6 months to live. This case concerns, as BP did not, questions as to whether it is in AO’s best interests to be allowed to live with her family in the last period of her life. The ability to die with one’s family and loved ones seems to me to be one of the most fundamental parts of any right to private or family life. That how a person dies can fall within the ambit of article 8 is now well established, see as but one example Pretty v UK [2346/02] at [65]. I have not been able to find any case law on the degree to which an inability to die with one’s family engages article 8, but it would seem to me self-evident that such a decision by the state that prevents someone with a terminal disease from living with their family, must require a particularly high degree of justification under article 8(2). Wider public health considerations, such as the protection of the community by restricting visits to a care home were considered in BP, but are not the issue in the present case. It was not argued that there was any public health reason to prevent AO leaving TO to live with her family.
29. In this case the central question concerns whether it is in AO’s best interests, as a person without capacity, to be allowed to leave TO to go to her family to die. In respect of a best interests decision in similar circumstances in A NHS Trust v DU and others 2009 COPLR 210 Hedley J said as follows;
[10] This case illustrates the breadth of the concept of best interests which the court is bound to apply. The focus of the case was very much on treatment and where she should be. But, of course, the introduction of the possibility of Nigeria adds a new dimension. It is an integral part of the concept of best interests when dealing with a person of this age that the court recognises the imminent possibility of death and the importance of making arrangements so as to secure that the experience of death may be in a context which is the most congenial and peaceful that can be devised. Also implicit in the concept of best interests is the importance of the country and culture of origin and the whereabouts of the family. They will often take precedence over, for example, the question of risk avoidance or the exact quality of care that may be available. It is not possible to travel without some incidence of risk, but that is a risk that may be easily outweighed by the benefits of successful travel. It may be the case, insofar as it is remotely the business of the court to investigate it, that the quality of care at the point of destination may not be the same as the quality of care at the point of departure. Those are matters also which may easily be overcome by the benefits of relocation, and it is in consideration of those matters that the question in principle of this lady’s transfer back to Nigeria is no longer controversial. It is clearly in her interests, having regard to her condition, her background and the whereabouts of her family, that she should if possible be transferred to Nigeria, and the evidence suggests that that is probably practicable.
Lieven J made the decision at the end of the second hearing that it was in AO’s best interests to leave TO and go to live with VE immediately. The order took immediate effect and AO moved on the evening of 20 April 2020. She emphasised that:
34. […] the arguments before me turned on the fact that AO had terminal cancer and was going to die within a relatively short time. Nobody argued before me that I should not allow AO to leave TO because of the risk of Covid 19, or that any possible public interest in not allowing her to move outweighed her best interests, or her article 8 rights. At the time I made my decision it was not clear whether or not any of the other residents at TO had Covid 19, and it was not being said that AO had Covid 19, but this is a possibility given some accounts of her current symptoms. This is important because this judgment is solely about what is in AO’s best interests in circumstances where she had terminal cancer and her family wanted her to die at home with them.
Lieven J started with:
35. […] the basic proposition that most people would strongly wish to die with their family around them. I entirely agree with what Hedley J said in DU that the court should seek to ensure circumstances of P’s imminent death that are as peaceful and dignified as possible. Given the Covid 19 pandemic, the need to minimise the spread of the virus and the current Government guidance if AO were to stay at TO, then the most contact that she would be likely to have would be one short visit from one family member at or around the time of her death.
On the evidence before her, Lieven J concluded that “if AO was capable of expressing her wishes and feelings it is highly likely that she would say that she wished to leave TO and spend the time left to her with VE.” She was satisfied that AO could be properly cared for if she moved to live with VE, because she had been staying regularly with them, including for a period about 6 weeks before she was admitted to KCH. Lieven J was:
39. […] was much more concerned about end of life palliative care, and in particular pain relief. However, Ms Clegg made clear that the CCG could commission such care, and this would include visits by district nurses who could ensure appropriate palliative care was provided. I am very grateful to Ms Clegg for the very straightforward and realistic evidence she gave, and the efforts the CCG is going to in these most difficult of times, to continue to provide end of life care to people at home. In those circumstances I have no hesitation in finding that AO can be fully and properly cared for at home, and I am no longer concerned that she will suffer unnecessary pain at the end of her life.
40. In the light of Ms Clegg’s evidence, I saw no benefit to AO in acceding to [the submission by the local authority that there should be] a delay so that further assessments could be carried out. To the degree further assessment was necessary it could be done once AO was living with VE.
Lieven J emphasised that, whilst all concerned were conscious of the risk of AO contracting COVID-19 – and, potentially, spreading it to her family if she moved to live with them, it was unquantifiable and not raised as a factor for her to take into account at the hearing:
42. The approach I took at the hearing was simply to assess what was in AO’s best interests, and to conclude it was in her best interests for her to go to live with VE and to spend her last days with her family. Other considerations of wider public interest which might have arisen in another case were not raised in this case.
Finally:
44. It was necessary to consider the Health Protection (Coronavirus Restriction) Regulations 2020 (SI 2020/350) in order to ensure that in allowing VE or a family member to collect AO from the care home I was not inadvertently allowing a breach of the Regulations. Regulation 6(1) prohibits any person from leaving home without a reasonable excuse. Regulation 6(2) lists, apparently non-exhaustively, matters that would amount to a “reasonable excuse”. At regulation 6(2)(d) these include providing care or assistance to a vulnerable person. For a family member to collect AO from TO is to provide assistance to a vulnerable person and thus falls within that sub-regulation. It would in any event also accord with the order of the court. I therefore made the order sought so that AO could move on the evening of Monday 20 April 2020.
A postscript made clear that AO died very much more quickly than might have been anticipated from the judgment – some 2 days later. It is not clear where she died, what she died of, or whether she had, indeed, contracted COVID-19.
Comment
As with the earlier judgment of Hedley J in Re DU which also – coincidentally – concerned a Nigerian person, this judgment is significant for recognising the importance of where and surrounded by whom you die, Lieven J recognising that “[t]he ability to die with one’s family and loved ones seems to me to be one of the most fundamental parts of any right to private or family life.” Although Lieven J was at pains to make clear that the direct risks of COVID-19 to AO (or, via her, to her family) were not factors in her decision, it is doubtful whether she would have made the order that she did – to take effect with immediate effect – if the consequences of COVID-19 had not been to limit contact at the care home so dramatically.
The postscript to the judgment does raise a lurking concern. Given what was described as the “straightforward and realistic” evidence of Ms Clegg as to what the CCG could arrange as regards palliative care, it does not appear that the commissioning of such care had, in fact, taken place at the point when Lieven J (presumably almost immediately after hearing that evidence) ordered that AO be discharged from the care home. In the ordinary course of events, one would have anticipated that the court would wish to have seen, at a minimum, a plan for such care – it is not entirely clear whether Lieven J had such a plan before her. It is, further, not entirely clear whether such plan or arrangements as the CCG could commission had been implemented by the time that AO died.
These are undoubtedly not ordinary times, and from the judgment it is clear why Lieven J felt she was both in a position, and indeed effectively compelled, to order discharge at the point of the hearing. However, more broadly, the importance of dying at home surrounded by one’s family must be weighed in the balance alongside the importance of dying with effective symptom and pain control.[2]
[1] The second judgment in the case not yet having appeared.
[2] Whilst the case was not about COVID-19, Baroness Finlay has written a guide for family members who are looking after a person who is dying at home with COVID-19, which may be of relevance in circumstances where community palliative care teams may be very stretched.
