By Claire Martin and Alan Howarth – 11th September 2020
We are clinical psychologists working in an older people’s mental health service in the North of England. One of us (CM) attended a Court of Protection hearing by telephone on 6th July 2020 and subsequently discussed its substantive content with the other (AH). I (AH) have over 10 years’ experience of working with people with dementia who present with behaviours that staff find difficult to understand and manage. For 7 years I (AH) was clinical lead of a behaviour support service that supported care home staff to deliver person-centred care to people presenting with behaviours that were difficult to understand and I currently work on a ward which provides care to people with dementia presenting with complex needs. I (AH) have therefore frequently been involved in discussions about the use of covert medications and the use of antipsychotics with people with dementia presenting with behaviours that challenge.
The hearing was listed (in CourtServe) like this:
In the County Court and Family Court at Newcastle
Monday 6 July 2020
Before Her Honour Judge Moir
|Start Time||Case Details|
|11:00 AM||COP 13375644 DJL COVERT MEDICATION ISSUE 1 HOUR|
I (CM) was immediately interested in observing this hearing because the topic of covert medication is something which has direct relevance, not only to our work as psychologists with older people, but also to important issues of how any of us might be cared for and ‘managed’ when we lack capacity to make decisions, such as what medications we take.
Many people with dementia are unaware of their mental and physical health difficulties and therefore refuse medications that they are prescribed. If people lack capacity to make decisions about their medication it is sometimes agreed that it is in their best interests to be given medication covertly (usually in food or drink), although that is generally only in exceptional circumstances. In my (AH) experience, when someone with dementia refuses medication, their medications are ‘rationalised’ so they are only prescribed the most vital medications. It would only ever be those that would be prescribed covertly.
It is also extremely common for people with dementia to present with behaviours that challenge at some point during their illness. These behaviours can include agitation and aggression and can therefore be dangerous for the person with dementia and those around the person (e.g. family, care home staff, other residents). Current guidelines from the National Institute for Health and Care Excellence emphasise the importance of using psychosocial interventions as the first line of treatment for behaviours that challenge in people with dementia. Antipsychotic medications are only recommended when the person with dementia is at risk of harming themselves or others or experiencing severe distress. The reluctance to prescribe antipsychotic medications is partly due to our understanding of these behaviours in people with dementia. They are not symptoms of dementia and are better understood as a communication of distress, disorientation and misperception. Whilst medications can be sedating they rarely address the distress that drives the behaviour. Additionally, reviews of their efficacy suggest that it is modest at best. Finally, antipsychotic medications can also have unpleasant side-effects including drowsiness, headache, weight gain and gait disturbance (which might lead to falls). More significantly, on average, for every 1,000 people living with dementia who experience hallucinations, delusions or agitation and who take antipsychotics for 6 to 12 weeks, 12 will have a stroke because they take an antipsychotic and 11 people die because they take an antipsychotic.
Understandably, the decision to prescribe an antipsychotic to a person with dementia and administer it covertly should not be taken lightly. Counsel in this hearing noted that it represented a ‘significant interference’ with P’s human rights. We would argue that such a decision should only be made when there is significant risk and/or distress, when all other interventions have been shown to be ineffective and the use of antipsychotics has been shown to be effective.
There had been various previous hearings and the outstanding issue for the judge at this hearing was solely whether covert medication was in P’s best interests, and if so, the manner of administration.
P is 78 years old, lives in a care home and has a diagnosis of dementia. The clinicians involved in his care were agreed that his prescribed medication was best administered covertly (with his food or in his tea) since a) their consensual assessment was that P lacked capacity to decide issues regarding his medication and b) it was in his best interests to receive the prescribed medication.
Counsel for the Local Authority maintained that P could not retain information relating to the need for his medication – which was to do with ‘agitation’ and ‘cardiovascular disease’. We learned that in January 2020 P’s GP and a registered nurse made a best interests decision to administer covert medication of an antipsychotic (Olanzapine), an anti-hypertensive (Ramipril), Aspirin and a Statin. These medications were mixed into tea and food. This was considered the least restrictive approach as we were told that P would refuse medications. The GP had confirmed on three separate occasions that P lacked capacity to decide about his medication and had made various reports for the court. The GP had reported that the antipsychotic was to ‘prevent agitation and distress’.
The position statements make clear that it was the GP’s medical view that the medications were ‘safe and effective’ for P’s care. The position statements and hearing did not mention any secondary care older people’s mental health involvement with P, which we discuss below. At the hearing we were told that the medication ‘prevented or assisted in protecting himself and others when he becomes agitated and difficult to deal with’ and we were informed that P posed ‘a risk to himself and others, including residents and staff’, suggesting aggressiveness could be present. It was argued that:
“if covert medications are not given P would refuse to take them. His own wishes and feelings can only be concluded to be that he doesn’t wish to take the medication. Covert medication is proportionate and necessary since there is evidence that a lack of these medications would lead to a decline for P and increase risks to other residents and staff”.
Counsel for the LA raised a concern about Article 5 and Article 8 rights:
We are conscious of the interface with Article 5 and Article 8 rights and we are clear that this is definitely a significant interference. But as I’ve opined, it must be that the medication, and the administration of the medication is in his best interests, not only as far as his health is concerned but also that, without it, he places himself, the staff and other residents at risk.Counsel for the Local Authority
The hearing took less than an hour and the Judge made a swift declaration that it was in P’s best interests to receive (all) his medication covertly, with a six-month review.
What we understand to be the facts
Having observed the hearing there are a number of issues that we accept as factual. Firstly, the judge informed us that the position statement was ‘comprehensive’ and all parties agreed that P lacked capacity to make decisions about his medication. Secondly, the GP reports that the antipsychotic was effective in reducing P’s agitation. Since we have not been able to observe P’s behaviour, we have to accept this as true. Finally, all those involved acknowledge the presence of significant risk. There were clear risks, that had been documented over time, regarding increasing agitation and the suggestion, at the hearing, was that physical aggression was a risk to others and to P himself.
What we are concerned about
There are also a number of issues that cause us concern. It was agreed that covert medication is in P’s best interests but there was no discussion of P’s previous wishes at the hearing observed. Whilst we can probably agree he would not want to be distressed or be a risk to others, he may have been strongly opposed to medications throughout his life. It is also very possible that, due to the side-effects of antipsychotic medication (highlighted above), he would prefer non-pharmacological interventions to be utilised instead.
This leads us on to our second concern which is the view that the administration of antipsychotic medication covertly is the least restrictive intervention. As discussed previously, current guidelines suggest that the use of antipsychotic medications is one of the most restrictive interventions. Administering that medication covertly is arguably even more restrictive. Whilst it does not involve physical restraint, it is dishonest and requires care staff to lie. This is significant and highly unusual in care settings. A paper produced by the British Psychological Society proposes a stepped care approach to the care and treatment of behaviours that challenge in dementia. When the difficulties emerge, the first step involves the GP and care setting ruling out physical causes and assessing/monitoring the behaviour for a period (4 weeks is suggested). If difficulties persist, the GP and care setting would deliver “low intensity interventions” (e.g. developing life histories, changing the environment) to see if they resolve the difficulties. If those interventions are unsuccessful the paper suggests moving to step 3, which involves practitioners more experienced in working with people with dementia becoming involved. This would often be the local secondary care older adult mental health service. If the involvement of that service does not address the difficulties there would be a move to step 4 (the final step) which is the delivery of more specialised, individualised interventions often delivered by specialists in behaviours that challenge.
Pathways of care vary across the country; in the north east of England all older adults have access to local older adult community mental health teams and most have access to specialist services that work specifically with behaviours that challenge in people with dementia. In the case of P, whose behaviours were evidently viewed as very risky, it is therefore highly unusual for the GP to be the lead health professional involved in making decisions about his care. We would expect a variety of mental health professionals to be, or have been, involved. It is, of course, possible that those services had been involved and less restrictive interventions had been tried, though they were not mentioned in the hearing and it would have made sense for the professionals that had been involved to be part of the court proceedings.
Furthermore, even if less restrictive psychosocial interventions had been tried and failed, there is a concern about how frequently P’s medication will be prescribed covertly. The decision was that it was in P’s best interests to receive the identified medications covertly. However, it is perhaps unlikely that P will always refuse his medications. Many people with dementia refuse their medication some of the time but few would do it all of the time. It would therefore be sensible to have an approach that is more refined and states that P will receive his medication covertly only if he refuses it. We have a duty under the Mental Capacity Act to deliver the least restrictive intervention and therefore we need to be able to adapt depending on the circumstances. Our concern is that a blanket agreement, that it is in P’s best interests to receive his medications covertly, might mean that he always receives them covertly and that less restrictive interventions will not be tried.
Care homes are very busy and staff have a large number of tasks to complete on a daily basis. There is also often only the minimum number of staff required on shift. As a result, staff often feel under pressure and will prioritise interventions that are quicker. It is undoubtedly quicker to deliver P’s medication covertly than to sit with him for 5-10 minutes to assist him in taking them overtly. A blanket decision that it is in his best interests to have his medication covertly therefore makes it more likely that this becomes common practice and alternative, less restrictive, interventions are not implemented. That, according to the Mental Capacity Act, would not be in his best interests.
Finally, we also have a concern about the claim that the medications are “safe”. P might not have experienced any obvious side-effects from taking the antipsychotics yet, but the risks still remain. The risk of stroke and death is high (relative to most medications) and P has cardiovascular difficulties which would be likely to increase those risks for him. Whilst that does not mean that he will suffer a stroke or die as a result of taking antipsychotics, we believe that it is perhaps complacent to view them as safe because “it is not possible to know in advance what will happen to any individual person”. Current guidelines state that the person with dementia should be reassessed every 6 weeks to see if they still require antipsychotics, and that advice therefore suggests that they can never be viewed as safe.
When observing a hearing in the Court of Protection we see only a snapshot of a person’s life and the decisions made about them at one point in time. This is against the backdrop of multiple, deliberative processes both in best interests meetings outside the court and in COP hearings making decisions about care. We are conscious that, for any case observed, there is likely to be a lot more information that we do not know, than that of which we are aware. So, all of our reflections about covert medication in this case are written with that caveat.
My (CM) initial response to this hearing was surprise at how quickly it was accepted that covert medication was the least restrictive, safest and most effective means of caring for P; then to wonder why, if this were the case, we hadn’t heard evidence of failure of other, less restrictive, options tried, with clinical input from a challenging behaviour team (such as psychosocial interventions, in accordance with NICE guidelines and BPS recommendations outlined earlier). It made me wonder whether the judge was aware that other, effective and less restrictive, treatment approaches exist and, indeed, that there is NICE guidance detailing their use.
We would argue that covert medication is always an approach that needs careful consideration, especially in the use of antipsychotics with people with dementia, due to the potential harms outlined earlier. Therefore, efforts to find alternative ways of managing a person’s need should always be tried first (or at some point, once an imminent risk situation has been addressed).
In 2009, the Banerjee Report highlighted the risks of antipsychotics in dementia. Since then there has been a lot written on the importance of utilising alternative non-pharmacological interventions. Those interventions can be time-consuming to develop and implement. In order for these interventions to be implemented, care homes need to commit to them by dedicating resources (mainly staff time). The NHS also needs to ensure that it has the appropriate expertise within mental health services to support people with dementia presenting with behaviours that challenge and those that care for them. Unfortunately, care home settings and the NHS, in our experience, have been reluctant to commit those resources and an over-reliance on antipsychotic medications remains. Judgements like the one that is the subject of this blog unfortunately perpetuate this, through the lack of scrutiny of the use of antipsychotic medications. If the courts do not insist that national guidelines are followed (or make it explicit that they have been) it has the potential to make it more difficult to implement non-pharmacological interventions in the future.
It left me [CM] feeling that, if I were in this situation, I would want anyone representing my best interests to be fully briefed and informed about all methods of managing my behaviour and to argue for the least restrictive and harmful, not only for others, but also for me. Some approaches might help to reduce some risks – such as aggression to others – but they can increase other risks to the person themselves. It is the balance of those risks that is emphasised in the guidance about caring for people with dementia whose needs can be difficult to understand and meet, but who, with no voice of their own, often find that their emotional and physical needs are secondary to those of the (often under-resourced and ill-equipped) wider system.
Claire Martin is Lead Consultant Clinical Psychologist, Older People’s Clinical Psychology Service, Gateshead. She tweets @DocCMartin
Alan Howarth is Consultant Inpatient Clinical Psychologist, Older People’s Clinical Psychology Service, Gateshead. He tweets @DrHogie007