Capacity and Death in the Court of Protection

By NB – 24th June, 2020

The judgment from this hearing is published on BAILII and is available here.

On 22 June 2020 I attended (via Microsoft Teams) my first hearing in the Court of Protection.  It was before Mr Justice Hayden (listed as Case number 13614472). There was no information about what the issues were before I attended, but it turned out to be very interesting and important given my background and experience.

I have a background in the adult learning disability field, with a BA (Hons) in learning disability. I worked in the health, social care and charity sectors until I became a full-time carer for my son in 2012.   I was trained as a community advocate in one of the first advocacy schemes which was set up in a local long stay hospital in the 1990s

The case involved a woman in her 30s with a learning disability who had just been given a cervical cancer diagnosis.  She was present at the hearing (in a room at the hospital) along with her mother.  We also saw clinicians in another hospital room, and also a lawyer for the Official Solicitor who represented her, and one for the NHS trust.

The recommended treatments for her cancer involved 5 weeks of radiotherapy, plus chemotherapy and some internal treatments that would mean staying in hospital overnight.  The treatment would trigger an early menopause and leave her infertile.  Both she and her mother were keen for the treatment to go ahead but clinicians were concerned about her capacity to consent to the treatment – and indeed how to handle a possible future situation in which she might express the wish not to continue with treatment.  The doctor explained that the treatment was very tiring and has unpleasant side effects.

 The Trust had brought the case to court because they were concerned that the patient was not able to give consent to treatment because she did not understand what was wrong with her (beyond ‘something bad’), and did not understand what the treatment would involve,  the serious side effects, and the life altering consequences of it.

There was also the issue of whether she understood that she would die – they said within a year – if treatment isn’t given.

Mr Justice Hayden agreed that due to the highly invasive nature of the treatment, the case should have the scrutiny of the court. He pointed out that the need for treatment was strikingly clear, so – given the possibility that the patient might say she didn’t want to receive it at some future point in the process – it was indeed good practice for the court to make a pre-emptive plan.

The consultant clinical oncologist described at length how he and another doctor and other medical professionals had tried to support the patient’s understanding and decision-making about treatment. I was encouraged to hear of the use of accessible ‘easy read’ literature and to hear that her mother and step-father were present when information was conveyed to her.  They had informed her that the treatment would mean that she ‘can’t have babies’ and that she would start the menopause. The consultant clinical oncologist said he thought that overall she understood something ‘bad’ might happen to her if she did not have the medical treatments, but after a question from Mr Justice Hayden, admitted that he had not used the word ‘death’ when talking to her.  He’d been concerned about upsetting her – but not using the word “death” would have made it hard for her to understand.  The Trust lawyer had used the word “demise” in introducing the case – which as Mr Justice Hayden pointed out seems to “shy away” from the word “death” and is harder to grasp.  The judge suggested that it “may be necessary to be blunt” or “candid” and to say “if you don’t have this treatment you may die”.

At this point I was wondering how on earth someone with a learning disability is supposed to navigate the decision-making process if they’re not actually given the information that they might die without treatment.   Like anyone else, they should have the right to that information. I also wondered whether a learning disability liaison nurse, available in a number of acute Trusts, could have been there to support in this process. It turned out that the patient’s mother had been more blunt with her.  She explained eloquently that she had told her daughter ‘if you don’t do this you will die’.  Her daughter had replied: ‘I don’t want to die I will do the treatment’.  The mother also said she would take time off work during the treatment process to support her daughter: ‘I’ll be with her all the way’.   I thought that most parents aren’t the person to have to break that news to an adult child and how it shouldn’t have been that way.  I was impressed how brave this family was.

People with learning disabilities experience multiple health inequalities.  In this case, it seems that the patient’s team provided the best possible care and carefully considered the complexity of her case, but in failing to raise the fact of her likely death, they caused problems of inaccessibility. Doctors should feel more confident in talking about death and dying to patients with learning disabilities.

In his judgment, Mr Justice Hayden concluded that the patient does not have capacity to make her own decisions about her cancer treatment, but that treatment would be in her best interests so long as she chooses to engage with it.  If she does not, after all possible support and encouragement are provided for her to do so, the emphasis should shift to palliative care – with the option of coming back to court at any point if necessary. 

In this virtual courtroom with Mr Justice Hayden the law enabled a person with a learning disability to access the same rights and healthcare as any other citizen. This give me a huge sense of relief that my family member will be safe and listened to with these structures in place, and free to live the life he chooses.

NB tweets @nb87120292

Resources on Talking about Death with People with Learning Disabilities

How to talk to people with learning disabilities about death, and why you should

How to break bad news to people with learning disabilities

Palliative Care for People with Learning Disabilities Network

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