“In palliative care, questions about mental capacity are rarely straightforward as there are so many factors involved. Professionals attempting to do the right things are confronted by complex and ethically demanding decision.” These were some of the introductory comments made by Michele King, Social Work and Safeguarding Lead at St Christopher’s as she opened the Mental Capacity in Palliative Care Conference.
The 20-year-old Act is one of the most important frameworks for guiding practice and the conference provided an opportunity to reflect on its principles and complex realties of putting it into practice in palliative care, Michell added.
“How is it being lived in real life decisions?” she asked rhetorically. Given that two thirds of people who die experience some kind of cognitive impairment in their final stages means the Act cannot be regarded as an abstract legal framework.
This was echoed by Dr Emma Hall, Palliative Care Consultant, St Christopher’s, who said the stakes are especially high when it comes to assessing capacity in someone with advanced illness, as time is short and the onus is on aligning with the individual’s goals while considering the impact on their family.
Barrister, writer and educator, Alex Ruck Keene provided the more than 200 delegates with some of the key takeaways of the day during his two speaking slots.
Alex reminded health and social care professionals that the Act, Section 5 specifically, provides a defence to assaulting a patient, if they’ve consented or the professional believes for good clinical reasons that they’ve acted in their best interests.
He also stressed the importance of asking why you’re assessing someone’s capacity and the context in which you’re doing it, because someone doesn’t lack capacity per se, only to make a specific decision.
“If someone has capacity, it is on them. If they don’t, it’s on us,” was his blunt advice. When writing a report, professionals should remember the law doesn’t expect perfection, just evidence of proper reasoning, Alex added.
Alex also pleaded with delegates to ask for more time to make an assessment if they ever felt like they were being rushed and he advised metaphorically placing yourself in the patient’s shoes so that you’re confident you’re making a best interests decision for that specific patient.
Establishing if someone is aware of their own deficits is one of the best ways to assess if they have executive capacity. This important point was well illustrated with a case study provided by Dr Matt Butler, Specialist Registrar in Psychiatry, South London and Maudsley,in which a woman with HIV who engaged with professionals and apparently accepted advice, but on further assessment was found, in practice, not to understand or even remember about her condition.
Emma Hall emphasised that completing an assessment effectively and compassionately takes time, especially if reasonable adjustments are required. Her co-speaker, Matt Butler, recommended a multi-disciplinary approach with input from doctors, social workers and welfare rights professionals.
The importance of collaborative communication with colleagues is matched by the need to recognise that impaired communication skills in a patient don’t equate to a lack of capacity.
Isla Jones, Speech and Language Therapist at St Christopher’s, said:
“If you assume incapacity because of lack of communication you may work less hard and take less time because you’ve almost reached conclusion. Challenge yourself.”
Co-speaker Dr Mark Jayes, Speech and Language Therapist and Research Fellow, Manchester Metropolitan University, added practical advice: “You need to consider how to provide support to enable people to communicate to their full potential and have to think about the environment in which you’re conducting an assessment too. We may not be able to change their communication abilities, but we can change the environment and enskill ourselves to be better communication partners.”
One size doesn’t fit all, he added, stressing the need for tailored solutions based on an understanding of the ways in which the individual best understands information and expresses their choices.
Mark and Isla implored delegates to reach out to speech and language therapists for support in effective communication.
Addressing that need for help was one of the central elements of the presentation by Dr Sharmeen Hasan, Consultant Geriatrician, Kings College Hospital. She recounted examples of joint decision-making with numerous clinical colleagues from both palliative and intensive care as well as lawyers. And when the assessments and the aftermath have been traumatic, proper debriefs are invaluable, Sharmeen said.
“Understand the space where people are and remember that multi-agency working helps with complexity,” she added. Later, in the final Q&A session of the day, she complemented this point recommending professional colleagues use plain, nonclinical language to aid communication.
Reducing complexity and with it the accompanying stress was the focus of the presentation by Zoe Burridge, Adult Safeguarding Lead at Bromley Healthcare. Zoe addressed one of the most common forms of adult abuse as identified in Safeguarding Adult Reviews (SARs) – self neglect. Lack of confidence means professionals often don’t look at important factors like previous trauma, the impact of substance misuse and executive capacity when assessing people who experience self-neglect.
Yes, Zoe said, this cohort has the right make unwise decisions, but the professionals need to be satisfied that the individual is fully aware but consciously disregarding or giving less weight to certain facts relevant to the decision. In practical terms, when that individual says they can and will clear up their house, what if they don’t day after day?
Zoe encouraged delegates to embrace their curiosity. “If things don’t add up ask more questions and document what you see or what is said. Give evidence and record the assessment clearly and consistently.”
In Bromley, Zoe said, they’ve adopted a complex case pathway to ensure the proper management of risks posed by self-neglect.
Delegates watched as Michele King, with two members of her social work team and an actor, perform a very lifelike role play of a mental capacity and best interests assessment. This was complemented by numerous case studies shared by speakers throughout the day. In her second session, Emma Hall used these to illustrate the comparative benefits of Lasting Power of Attorney, Advance Statements and Advance Decisions to Refuse Treatment. Emma advised delegates to encourage people to have an LPA and an ADRT, ensure that they don’t conflict, add them EPACCS and ensure they are registered with the Office of the Public Guardian.
Alexandra Hollingshead, Partner, Farrer & Co
Runs a project providing free legal advice for people aged 18-30 with terminal diagnosis at Royal Surrey Hospital.
“I want to improve my knowledge so I can answer my clients’ questions. I know St Christopher’s well. I came to the Total Pain conference last year.
“Our clients some will have brain tumours and I need to navigate the capacity question when they’re drafting wills and advance decisions in a short time span with the help of a Clinical Nurse Specialist. It’s been so useful, both in terms of getting a nice overview of the subject and the detail on the MCA from Alex Ruck Keene is really useful. It was pitched really well for me. Capacity is incredibly familiar for me, but applying it in a palliative care context is new. This conference was just written for me.”
Karita Razzell, St Mungo’s Palliative Care Manager, said: “I work to support people experiencing homelessness to access palliative care and deliver training of palliative care. I love the Mental Capacity Act, it is fascinating. And there are a lot of capacity issues in the client group I work with – people with substance misuse issues, mental health issues, and lots of trauma and lots of young people with overlapping safeguarding issues. I’m trying to develop a training course on the Mental Capacity Act for homelessness so this is really useful. It’s been very interesting listening to people talking about executive capacity. It’s been encouraging to hear speakers toughing on professional curiosity too. It’s really nice that they’ve taken a realistic approach, looking at the barriers that there are to conducting capacity assessments. It’s all been really interesting and great to hear such a broad spectrum of opinions, expertise and perspectives.
Paul Lawrence, Head of Safeguarding, Shooting Star Children’s Hospice:
“I’m new to world of palliative care and this falls under my remit. I’ve been looking for useful mental capacity training and webinars I also wanted to hear Alex Ruck Keene who was speaking. It’s been really engaging and translatable to a children’s hospice setting. I particularly enjoyed the session with the speech and language therapists. It felt really practical and useful, especially thinking about some recent cases we’ve had. That’s given me some practical approaches to how I might do things differently in future.”
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This report was first published on the St Christopher’s Hospice website and is republished here with permission.
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