Alex RKThe decision in SS v LB Richmond on Thames and SWL CCG [2021] EWCOP 31 is different to others that have been reported to date (such as E (Vaccine) [2020] EWCOP 14, because it was clear that the objection to the vaccine came from the person themselves, not from family members. SS, the person in question, was 86, and had a diagnosis of dementia. Proceedings had been brought on her behalf under s.21A challenging her placement in a care home. During the course of those proceedings, it became clear that SS was increasingly resistant to medical interventions of any kind, although, as Hayden J noted, it was not clear whether this was due to her advancing dementia or was a longer-term feature of her personality and general approach to life is unclear.
The care home in which SS lived was a large one, 28% of whom (27 residents) had died during the first lockdown. Since January 2021, a GP, Dr N, had been visiting on a regular basis to administer initial and follow-up vaccinations to residents and staff. She had regularly spoken with SS to try to encourage her to have her vaccination. This has been reinforced by the care staff. Dr N conducted a capacity assessment with SS on 23rd March 2021, she noted:
“patient appears confused and unable to fully understand. Initially agrees to have vaccination and reports will go down the road to her usual doctor and get it. Subsequently refuses the vaccination. Carer.. re explained what I had relayed to the patient and the patient has difficulty understanding the reason for the call and the vaccinations. Doesn’t appear to understand what Coronavirus is despite being explained to twice. Unable to retain any information given. Patient then declines to continue with the consultation. Patient failed capacity assessment as unable to fully understand the information given nor retain the information [SS] doesn’t have capacity to consent for Covid-19 vaccination.
In the event of a best interest meeting, I would support vaccination and it would not be necessary to review the patient’s capacity at the time of administration of vaccine given that her dementia is a progressive condition since at least 2019 when it was last formally assessed.”
At paragraph 13, Hayden J observed that;
The ambit of this assessment strikes me as entirely consistent with that contemplated in: SD v Royal Borough of Kensington And Chelsea [2021] EWCOP 14; E (Vaccine) [2021] EWCOP 7. I hope Dr N will not think me too pedantic if I make the observation that “patient failed capacity assessment” strikes me as awkwardly expressed. It is not a test that an individual passes or fails, it is an evaluation of whether the presumption of capacity has been rebutted and if so, for what reason.
An application was made to court following discussions between SS’s Accredited Legal Representative and the local authority, and Dr N provided a more detailed assessment, in which she noted that the:
administration would be challenging with this patient. Any physical restraint would need to be necessary and proportionate with the minimum amount of force for the shortest period of time. I believe restrictive physical intervention will be required in this case to protect the patient and staff from coming to harm. Clinical holding by several staff members should be sufficient for administration in this case. However, this would be a decision taken jointly with the vaccine administrator and care home staff.
Under the sub-heading ‘belief structure,’ Hayden J set out his understanding of the picture of SS’s beliefs about medical treatment:
18. SS is recorded as having been compliant with her medical regime when she first arrived at the care home. However, as has become clear from several sources, there came a point when she discovered a newspaper article which she read as arguing that medicine “did more harm than good”. Quite when she first came by this article is unclear. In any event she had not been at the care home for very long before she started to brandish it, with characteristic forcefulness, at anybody who sought to afford her medical care of any kind. The consequence has been that SS has been almost entirely non-compliant with any attempted intervention. Ms Kelly Fisher [team leader at the care home] told me that some attempt had been made to administer covert medication to keep SS’s blood pressure more stable. However, she said SS was “like a blood hound”who could tell something was amiss and this plan was abandoned. I hasten to add that she made this remark in an affectionate way. Indeed, I was struck by the extent to which all Ms Fisher’s remarks about SS were both kind and respectful.
19. In June 2020 SS developed a rash on her legs. Even though this only required the application of cream SS resisted steadfastly. Staff and medical professions made great effort with her to encourage her to receive the treatment, but the outcome can only best be described as having “limited success”.
20. In her report, (see para 13 above) Dr N reviewed the medical records and noted that there is no record of SS receiving any vaccination of any kind at all. The records go back to 1997. Even more strikingly there is an unambiguous note that SS declined both seasonal influenza and pneumococcal vaccines when offered them by the surgery. The first of these refusals is recorded in 2002 with entries identified in 2010, 2012 and 2014. Thus, there is a clear and consistent pattern of behaviour which predates SS’s diagnosis of dementia by a significant period.
21. As Ms Hancock, counsel for SS, points out, whilst the above behaviour gives a strong indication of what SS’s capacitous wishes and feelings might be on the question of the Covid-19 vaccination, that must still be placed in the context of medical records which signal a history of co-operation and engagement with medical professionals. The notes prior to 2015 reveal SS to be a woman who is responsible and proactive in her treatment. Thus, there is a pattern of routine blood tests every few years; vital signs checked and monitored annually by the GP surgery; she has attended walk-in clinics, out-patients hospital clinics (on six occasions, with various complaints, between 2002 and 2010). It is also notable that she underwent a series of sometimes intrusive investigations between 2004 and 2009 e.g. endoscopy, x-rays and ultrasounds. As the dementia took hold, SS was noted to have presented to her pharmacist seeking to collect her prescribed medications before finishing the previous prescription. It seems likely that this behaviour reflected her deteriorating short-term memory. Reinforcing this is a changing pattern, after 2015, when SS misses appointments, fails to pick up prescriptions etc.
Hayden J then set out in some detail the analysis of the risk faced by SS, which merits reproduction in full as largely representative of the risk faced by many residents in care homes as at April-May 2021:
22. Apart from her cousin, TB, who has, in the past, visited approximately 3 or 4 times per year and during the period of social restriction spoken to her occasionally by telephone, SS receives no visitors at all. She is reserved and private in her approach to life and temperamentally inclined to keep her distance from others. She is at very low risk of infection from the other residents, all but one of whom has been vaccinated.
23. As care homes finally open up to more visits from family and friends, an identifiable risk is presented which has to be negotiated. This large care home makes provision for compulsory lateral flow test to visitors, many of whom will themselves be fully vaccinated. There is a further risk presented by staff members. The team leader in the care home has told me that 77 of the 100 members of staff have been vaccinated. Of the 23 who have not been, a few have declined for recognised medical reasons. The remaining individuals resist the vaccine in principle, some believe that it is, as yet, insufficiently tried and tested. By this, as I understand it, they are contemplating some unidentified adverse reactions which have yet to be exhibited.
24. Certainly, nobody could sensibly doubt the efficacy of the vaccination programme. The National Health England statistics, almost daily updated in the public domain, tell their own explicit success story. A few weeks ago, Covid-19 was reclassified as ‘endemic’ in the UK i.e. no longer ‘pandemic’. The forthcoming months generate cause for optimism but without any guarantees. The need for booster vaccinations and/or vaccinations modified to combat Covid variants remains a likelihood. Thus, the greatest risk, statistically, to SS comes from unvaccinated members of staff circulating in the community away from the care home. Properly recognising this risk Ms Christine Fisher [the care home manager] tells me that all staff members are required to have two lateral flow tests per week and one Polymerase Chain Reaction (PCR) test. The extent of the weekly testing reflects the calculation of risk. Having manifestly given the matter very deep consideration, Ms Fisher told me that ultimately, though she would wish all staff to be vaccinated, she considered the decision to have the vaccination to be an exercise of personal choice. (emphasis added)
A further indication of risk was provided by Dr Prabhakaran, a psychiatrist instructed to give expert evidence as to SS’s capacity. He summarised the position as follows:
8. General infection risk in care homes in England has reduced considerably due to various factors, as below.
-
- Covid infection rates are currently very low in England.
- There has been a high level of vaccination uptake amongst care home residents and health and care staff. Vaccines have been effective with studies demonstrating that healthcare staff are 86% less likely to develop infection after two doses of vaccine.
- Sero-positivity rate in age group 70-84 is high at 98.4 in weeks 12-15 2021(April data – see attachment)
- Effective use of PPE. And other infection prevention and control measures.
- Effective test and trace including use of rapid lateral flow testing visitors to care homes.
9. However, SS would be considered ‘clinically vulnerable’ based on Public Health England criteria primarily due to age, presence of advanced dementia and other medical conditions such as hypertension and high cholesterol. Although current infection levels remain low, residing in a care home environment confers a higher risk of being infected with coronavirus compared to being in a private residence. There are concerns of a third wave of Covid 19, which would place SS at higher risk.
In the circumstances, it was clear, Hayden J, found that SS lacked capacity to decide as to vaccination, such that:
25. […]The issue for the court therefore is one of determining what is in SS’s best interests. Having regard to the available evidence I consider that there is substantial material from which to conclude that SS if capacitous would most likely have declined the vaccination. Though she attended quite fastidiously to her general medical welfare, she plainly resisted vaccinations. The evaluation of what SS would have wanted is in this case, inevitably imperfect. Capacitous individuals facing a frightening pandemic might very well take a different view of a vaccination which restores them to their liberty than, for example, a decision not to take a flu vaccine. Ultimately, the forensic tapestry can only be woven from the available thread. However, it must be borne in mind that even though a capacity to weigh and balance the decision in focus has long disappeared, SS has nonetheless consistently and volubly opposed the vaccination. SS’s reality is undoubtedly delusional, but that does not stop it being her reality. This has to be both recognised and respected.
Hayden J considered, and rejected, a suggestion by SS’s cousin that she be told that her father, who was long dead, but who everyone understood to be very much alive in her mind, had requested that she take the vaccination. At paragraph 32, Hayden J identified that:
32. […] This involves feeding into a delusional belief system. Whilst that may occasionally have been necessary in negotiating routine day to day challenges, it risks, in this context, compromising all involved. It requires there to be a collusion to trick SS into complying with a vaccination which, on balance, it seems unlikely she would have wanted whilst capacitous and certainly does not want at this point. It is an artifice of a different magnitude and complexion to those earlier more mundane negotiations. It becomes disrespectful to her, not merely as the woman she once was but to the one she is now. Though undoubtedly a well-intentioned suggestion, it risks compromising her dignity and suborning her autonomy. It cannot, in my judgement, be in her best interests. I entirely understand TB’s instinctive view that such means might justify the end, given the protection that the vaccine would afford SS. I hope he does not read my reasoning above as, in any way, intended to be a criticism of him. It most certainly is not.
In the face of a submission by the CCG that it was in SS’s best interests to have the vaccination, Hayden J noted that he would have no doubt that this would be correct:
36. […] were I to confine the issue solely to the health-related states, events and data he identifies. A determination of “best interests” in this context however is, for all the reasons discussed above, not to be confined to the epidemiological; it requires evaluating welfare in the broader sense. As Baroness Hale said [in Aintree], it requires us to put ourselves in the place of the individual concerned.
In SS’s case, it was clear that there:
37. […] was no question of SS being supine or passive if she recognised that the vaccination was being given against her will. One of the carers noted that those involved in attempting any “gentle restraint” had better be “kung fu experts”, as she put it. The plan which involves both sedation and restraint contemplated the carers’ involvement. Ms Fisher did not think that was appropriate. She told me that she thought that SS would look to her carers for help. They would not be able to intervene; that would be distressing for both parties. Moreover, in Ms Fisher’s analysis it would most likely dismantle the tentative trust that had been established over the months and in consequence of sensitive and determined professional effort. I find this reasoning to be measured and persuasive. The Local Authority and the Accredited Legal Representative on SS’s behalf both submitted that when evaluating welfare in the broader sense, it could not be said to be in SS’s best interests. I agree.
On a procedural note, Hayden J noted that cases relating to COVID-19 vaccination are now usually heard by Tier 1 or Tier 2 J judges (for an example of the latter, see Re CR), but that this had been allocated to a Tier 3 judge because it presented “for the first time, an opportunity to evaluate strongly and consistently expressed views by P relating to vaccination and the weight they should be given, in the broader landscape of the insidious risk arising from the Covid-19 public health crisis” (paragraph 35).
Comment
This decision serves as a strong reminder that decision-making in relation to COVID-19 vaccination must be undertaken on an individual basis where the person lacks capacity, and that the answer is not always that it is in their best interests. It also serves, more generally, as a summary both of the (devastating) ravages of the pandemic in care homes, of the risk matrix as at spring 2021, and also a reminder of where risks are most likely to come from in the case of those in care homes who do not have visitors.
More broadly still, Hayden J’s observations about best interests decision-making in relation to a person with beliefs that can properly be described as delusional are important – that a person may be living in a reality entirely different to that experienced by anyone else does not mean that is not their reality, around which the decision has to be constructed. They chime also with the earlier observations of Peter Jackson J in the Wye Valley case that it was “no more meaningful to think of Mr B without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.” And Hayden J’s observations about the dangers – for all – of embarking upon a path of deception are powerful (even if there may be cases where such could be justified: see, for example, Re AB [2016] EWCOP 66); for more on the importance of truth-telling in relation to dementia, see the important 2016 Mental Health Foundation report: What is truth? An inquiry about truth and lying in dementia care | Mental Health Foundation.
Lastly, Hayden J’s observation about the (familiar) use of the phrase that SS “failed her capacity assessment” is an important reminder that there’s no such thing as failing an assessment. An assessment is the process of thinking, with an open mind, about the person’s decision-making capacity (and providing them with all practicable support along the way); that assessment continues for so long as is required, and including gathering such external evidence as necessary – e.g. observation of the person in action – until it is possible to reach a conclusion as to whether or not the person has capacity to make the decision in question.
