Inviting family into the decision-making process

By Caroline Barry, 25th November 2020

Having watched the Open Justice Court of Protection Project with admiration from afar, I finally got my first opportunity to participate in the Project as a public observer.  

At around 9.30am on 19 November 2020, I saw that a hearing was coming up before Mr Justice Hayden (COP 13544390).  I sent an email at 9.38am requesting access, not really expecting a response at such short notice.  By 10am I had a response and by 10.28am I was observing the proceedings.  

Like many other people, I have participated in endless Teams calls over the past few months but my first observation was of how intimate it felt.  I was expecting a sort of “bird’s eye” view from the back of a courtroom – perhaps reflecting my instinct and desire to be loitering at the back, inconspicuous and with a clear line of exit if need be.

Instead, we were asked to keep our cameras as we were checked in to the court, and the frame filling headshots left no doubt as to our presence in the proceedings.   As I am sure many have felt, there was a fleeting moment where I felt exposed and intrusive, questioning my own motives as voyeur of a highly sensitive personal situation.  

It was not a feeling I ever had when reading countless judgments from the Court of Protection.  Those judgments, as indeed this hearing, have – I am sure – made me a better doctor and a better advocate for those living with serious illness and it is for that reason that I felt able to remain on the call.

The case concerned a person we’re asked to refer to as PH. He is not yet 40 years old.  He has a complicated medical history and a range of injuries caused by drinking a highly corrosive substance about five years ago – whether in a suicide bid or a ‘cry for help’ was uncertain.  He now has a tracheostomy and a feeding tube.   He also suffers from seizures and a severe seizure triggered a diffuse hypoxic brain injury which has affected his cognitive function.  He’s currently in hospital, but ready for discharge, so a placement needs to be identified.  

Previous placements have broken down. He was described as showing “challenging and highly disruptive” behaviour – including violence during periods of agitation and distress.  The latest expert evidence has come up with a new diagnosis: “emotionally unstable personality disorder of the impulsive type”.  

Andrew has recently been found by an expert assessor to lack capacity across a whole range of areas, including residence, care, medical treatment, and more.  The expert report was received just a few days earlier.  

No decisions were made at this hearing because Andrew was unrepresented.  Mr Justice Hayden recommended that this should be sorted out “expeditiously” (by asking the Official Solicitor to act on Andrew’s behalf) because “we cannot do anything without Andrew being able to give his instructions, capacitously or otherwise”.  There will be another hearing on 19 January 2021.

Although it was a complex case, I felt on fairly solid ground as the background facts were outlined.  Assistance with complex decision-making is a routine part of palliative care.  The ability to synthesise a lifetime of medical problems into a coherent whole, and to pull together the threads of the physical, psychological and social challenges a person faces into a holistic formulation are skills that develop naturally over years of practice.

I automatically found myself thinking about how I would be documenting the problem list and management plan if I was the attending consultant, and perhaps the questions that I would be asking of PH or his clinicians, if I were involved in his care. 

This train of thought was interrupted by the participation of PH’s partner into the proceedings.   There was a noticeable shift in tone and body language of all the participants visible on the camera.  Mr Justice Hayden lent into the camera, his voice lowered and softened, head to one side. He asked her: “What’s the weather like there?  It’s a very beautiful place when the sun shines!”.  

The previous formality melted away and I watched as, with just a few words, a very real connection was made between the highly technical medical information and the person at the centre of proceedings, his life and values. 

I think perhaps only 4 or 5 questions were asked over the course of around 10 minutes.   I was left with the impression that more was gained in this short exchange than could have been obtained from several hours of ‘expert’ testimony. 

Palliative care, as indeed the Court of Protection, is often characterised by decisions that can appear binary; CPR or “DNACPR”, feeding tube or not, come into hospital or stay at home, capacity or no capacity.  At times, the burden of decision making can be hard to manage both for professionals and for the person affected.   

PH’s partner reminded us that those decisions are medical constructs. When asked what PH wanted, her answer was clear: “he wants to be normal. He wants his life back”. 

These few words had a powerful impact on me.  I was reminded of the way in which we are content in medicine to discuss the complexities of a case within the safe confines of a sphere of professionals.  Whilst the views of patients and their relatives are always sought, they are rarely “invited in” to the mechanism of discursive decision making. 

Often, we throw up a cloud of dust, and persuade ourselves that relatives and patients may lack the required technical knowledge to fully participate in decision making, whilst failing to recognise that it is us who are deficient in our ability to ask the right questions. 

I could see so clearly in this case how a meeting confined to professionals alone could develop tunnel thinking about medical decision making, without contextualising those decisions within a wider narrative arc of a person’s life story and essential values. 

I watched as Mr Justice Hayden, with calmness, clarity and compassion deconstructed this fallacy, with the simple but sensitive prompt of “making the decision for him, not for you”.   I flatter myself that I have effective communication skills but admit to being unexpectedly moved by watching the judge in action.

From an observer’s standpoint, the interaction appeared therapeutic, in the sense that a relationship was established, common ground found, reassurance given and a plan taken forward for the future.  

PH’s partner supported the view that PH would benefit from the right kind of neurorehabilitation – even if he could not see the potential benefits, and even if that meant that she wouldn’t be able to see him as often.

When you read a published judgment, I can’t be the only person who reads a few paragraphs then jumps to the concluding comments.  I realised today that when you think about Court of Protection cases simply in terms of the outcome of the case, you overlook the journey taken to get there.  

Of course, I am sure for many individuals and families a court hearing can be a highly distressing and detrimental process.  Today, I formed the impression that for others, it might be an opportunity to restore dignity and choice to someone who has been unwittingly dehumanised by many years of medical treatment. 

David Sackett, pioneer of evidence-based medicine, notably said “the most powerful therapeutic tool you’ll ever have is your personality”.  I hope that, in this case, the interaction I observed was indeed therapeutic for those involved.  If so, it will be thanks in no small part to Mr Justice Hayden’s sensitive manner and to the remarkable Lydia, who, within moments of speaking, established herself with quiet authority as one best placed to guide decision-making.  This latter point was also clear to Mr Justice Hayden, who recommended that she should be fully incorporated into discussions of Andrew’s care.

For my part, I left with a resolution to examine my own practice, and to consider deeply the motivations for the clinical decision-making forums (e.g. Multidisciplinary Team Meetings) I am part of that do not physically place the person or their family at their centre. 

Caroline Barry is a Consultant in Palliative Care with interests in mental capacity and human rights towards the end of life.  She tweets @drcarolinebarry

Photo by Anastasiya Romanova on Unsplash