Webinar 3 explored ‘best interests’ decisions in healthcare that are taken for and with adults. The speakers were:

• Wendy Mitchell, who has been diagnosed with young onset dementia keen to raise awareness of living with dementia
• John Coggon, a Professor of Law at the Centre for Health, Law and Society at the University of Bristol
• Victoria Butler-Cole, a barrister based at 39 Essex Chambers specialising in health and social care
• Anish Patel, a consultant liaison psychiatrist in Bristol, where he is also a member of the local clinical ethics advisory group.

Webinar summary, written by Harleen Johal, BABEL PhD student

The third webinar in the Spring into BABEL series explored ‘best interests’ decisions in health care that are taken for, and with, adults. The speakers consisted of an academic lawyer, a barrister, a consultant liaison psychiatrist, and a person with lived experience – and thus represented the breadth of people who study, make, and live with best interests decisions. The webinar was chaired by Professor Judy Laing, Co-Deputy Director of the BABEL project.

In the first part, Wendy Mitchell shared her experiences of living with dementia in a conversation with Professor Richard Huxtable, who leads the BABEL project. Wendy was diagnosed with early-onset Alzheimer’s disease in 2014. In addition to writing a daily blog, Wendy has authored a bestselling memoir, Somebody I Used To Know, and has more recently published “a practical guide to life after a life-changing diagnosis” What I Wish People Knew About Dementia. During her talk, Wendy reflected on the societal and clinical lack of awareness of the issues faced by people living with dementia, and the negativity that surrounds the diagnosis process. She spoke about the power that the words and actions of a clinician have, in determining how a person might react to a diagnosis, and her experience highlighted the harms that may arise when a clinician imposes their personal – potentially pessimistic – views onto the patient. Rather than giving her hope for a fulfilling – albeit different – future, the neurologist that diagnosed Wendy with early-onset dementia gave her pity. Sadly, this had lasting psychological effects. But, for the remainder of her talk, Wendy was hopeful and focused on “the gifts that dementia can give”, which included vivid memories of her deceased father, and “the power of talking”.

Wendy shared her interpretation of “best interests”, emphasising that a best interests decision should consider what the person would have wanted for themselves, which can only be discovered through ongoing, candid conversations. Wendy also suggested that it is not always family who know what a person would have wanted – sometimes friends and neighbours may be in a better position to provide that insight. While she recognised that conditions like dementia may prevent a person from providing consent (if they are assessed as lacking capacity to make that decision), healthcare professionals should not generalise or assume that this is the case. She ended with powerful messages: a dementia diagnosis should not be disabling, or preclude a person from being involved in decisions about their care, nor should it prevent a person from having their voice heard.

The second speaker, Professor John Coggon (Centre for Health, Law and Society, University of Bristol), explored whether mental capacity law is indeed law. Referring to Sir Mark Hedley’s Modern Judge as a starting point for the discussion, John introduced the question of whether “discretionary powers are compatible with justice”. The discretionary powers of judges are, as Sir Mark describes, seen in best interests decisions for adults who are unable to make their own decisions. However, when there is a legal standard – such as the best interests standard – Sir Mark cites Lord Bingham’s suggestion in The Rule of Law that it should not be an exercise of discretion but rather an application of law that resolves questions of legal right and liability. From here, John interrogated the legal best interests standard. He argued that much of the case law and legislative guidance surrounding best interests decisions emphasises what best interests is not, rather than clearly describing what it is. This lack of clarity (on how to establish what is in a person’s best interests) creates uncertainty around which way a best interests decisions may go when referred, for example, to the Court of Protection. Professor Coggon’s final reflections included questions of whether the discretion afforded to judges in making best interests decisions is therefore potentially arbitrary, and inconsistent with existing ideas of law, such as those articulated by Lord Bingham.

Victoria (Tor) Butler-Cole KC (Barrister, 39 Essex Chambers) next spoke about how best interests decisions for adults are dealt with in the Court of Protection, but emphasised that judicial involvement is infrequent. She described cases where best interests decisions ought to be taken (but are not), and others where best interests decisions are taken without sufficient scrutiny – drawing particular attention to cases involving the prescription of contraception for women with learning disabilities for the latter. Moving onto the practicalities of legal best interests processes, Tor first highlighted the level of detail that is required by the Court of Protection, which in itself results in a higher standard and higher level of scrutiny than if the Court had not been involved. She also spoke about the extensive consultation that occurs, both with professionals and with those close to the incapacitated person, to better understand what might be in that person’s best interests.

Notably, Tor observed that clinicians often only offer a view of what is considered to be in the person’s medical best interests, as they feel that it is the responsibility of the Court in these processes – and not theirs – to comment on what that person would have wanted for themselves. Indeed, a range of evidence will be gathered as part of the best interests procedure, which captures the person’s current and previously expressed wishes. Overall, she felt this rigorous consultative and evaluative process led to improvements in care plans and better outcomes for people. In response to John’s earlier questions, Tor felt that the best interests process in the Court of Protection was actually surprisingly predictable, especially in cases of similar subject matter – as the same line of argument would often be used to reach a judgement. This is despite both the landmark ruling in the Aintree case of 2013, stating that the best interests process might result in different decisions being made, and the apparent lack of guidance on how to assess what is in a person’s best interests.

Dr Anish Patel, a Consultant Liaison Psychiatrist in Bristol, closed the webinar by offering a clinical perspective, explaining that his job requires him to treat illnesses at the interface of the body and mind, which can sometimes lead to a lack of decision-making capacity. He is often required to facilitate capacity assessments and coordinate healthcare professionals involved in that person’s care. These processes are hindered by the challenges facing the National Health Service, including a more co-morbid population, staffing pressures, and a lack of continuity in care. Anish also noted how the urgency of best interests decisions can sometimes prevent the best interests checklist from being followed as robustly as it is, for example, in the Court of Protection. Anish ended with a reflection that, as a psychiatrist, he is used to managing high levels of risk, but not all clinicians may be comfortable with the levels of risk associated with ‘unwise’ decisions, which the Mental Capacity Act 2005 does, of course, allow people to make.