Webinar 1 explored the idea of ‘best interests’ in healthcare, from various perspectives. The speakers were:

• Jakki Cowley, a patient advocate who co-leads the organisation Empowerment Matters
• Giles Birchley a researcher in the Centre for Ethics in Medicine at the University of Bristol, working on the BABEL project
• Suzanne Doyle Guilloud, based at the Centre for Disability Law and Policy, NUI Galway, and Judy Laing, a Professor in the Centre for Health, Law and Society at the University of Bristol, both of whom are contributing to the BABEL project
• Julian Sheather, a special adviser in ethics and human rights to the British Medical Association (BMA), a trade union for UK medical doctors.

Webinar summary, written by Aoife Finnerty, BABEL team Senior Research Associate (Workstream 2).

Across 90 minutes, Webinar 1 of the Spring Into BABEL series aimed to explore the idea of ‘best interests’ in healthcare from a range of perspectives including law, ethics and advocacy.

The first speaker was Jakki Cowley, who is a patient advocate and co-leader of Empowerment Matters. In her presentation, Jakki took the participants through extracts from her book, Life, Death and the Journeys in Between: Stories of an Advocate, in which she discusses her 20 years of advocacy, particularly on behalf of those with prolonged disorders of consciousness. Her book is a culmination of the stories of some of the people for whom she advocated and tells the story behind the court cases.

Jakki took webinar participants through four stories of best interests decision-making: Mrs N, June, Jodie and Paul Briggs. Mrs N suffered from Multiple Sclerosis and the faith-based home in which she was residing was refusing to discuss her best interests or to allow her levels of consciousness to be assessed. This was despite evidence from the family that indicated that Mrs N may have wanted treatment withdrawn given her condition, thereby highlighting the extent to which families and the individual can be ‘side-lined’ in these situations.

Jakki then told some of June’s story. Although there were best interests meetings in relation to June’s care, they focused on clinical progress and medical information rather than incorporating information about June as a person and particularly her (past) wishes and beliefs. Instead, this kind of information was ‘shut down’ on the basis that the matter was going to court, again highlighting the degree to which information about the person herself was excluded from the best interests process.

Next, Jakki discussed Jodie, a woman in a permanent vegetative state about whom a best interests decision was made to discontinue PEG feeding. Jodie’s PEG was removed, after which she was admitted to hospital where staff wanted to reinsert a PEG. Jodie’s mother requested that an application to the Court of Protection be made in respect of Jodie, given that the PEG had already been removed and staff confirmed this would happen. She returned home to be informed that the PEG had been reinserted without a court application.

Finally, Jakki told the story of Paul Briggs, a man who was left in a minimally conscious state following an accident. She recounted the ‘fight’ that she and Paul’s wife, Lindsey, had with the Trust responsible for his care to have treatment withdrawn based on his previously expressed wishes and feelings. Jakki highlighted the misunderstanding of the law that some of those responsible for Paul’s care had and discusses the three times that Paul’s PEG was replaced without any discussion with Lindsey, despite proceedings already being issued in the Court of Protection (but before the judgment was handed down).

Giles Birchley, a senior researcher on the BABEL Project, presented a review of bioethical literature relating to best interests. He began by outlining the origins of best interests, highlighting its presence in ethical guidance and in many legal instruments, such as international conventions and domestic legislation. He argued, however, that the concept of best interests may not have a shared understanding amongst these various sources.

Giles’ analysis revealed three main themes in ‘best interests’ literature: Best Interests and Theory; Process Factors informing Decision-Making; and Best Interests and the Challenge of Relationality. In terms of theory, Giles discussed links between best interests and a number of groups of theories including duty-based theories, rights discourse and those based in utilitarianism (i.e., consequence-based thinking). Next Giles discussed process factors in decision-making for other people, where he contended that all of the literature describes a linear process of decision-making: it starts with patients having decision-making authority and moves on to others making decisions on behalf of the person – but  the role of best interests within these linear processes was unclear. Furthermore, there was not a shared understanding of who was responsible for such decision-making, i.e., should authority be vested in one person, or diffused? Finally, Giles discussed the challenge of relationality as it applies to best interests; here, he described a range of approaches that recognise the role of relationships within decision-making and which construe decisions as rarely made by the individual alone but instead recognising social interdependence.

When these themes were analysed, Giles identified a ‘particular shape’ to best interests within the bioethics literature, demonstrating a predominantly ‘negative framing’. For example, when describing the theme of best interests processes, Giles comments on ‘the reductive role of liberalism’ within decision-making; in other words, its description in terms of ‘freedom from…’ as opposed to ‘freedom to…’. In connecting this ‘negative framing’ to a broader discussions of liberalism, Giles highlighted the connection with debates on ‘new’ and ‘old’ liberalism and, in turn, linked these back to theory and processes of best interests and relationality.

Judy Laing, Professor in the Centre for Health, Law and Society at the University of Bristol and the Co-Deputy Director of the BABEL project, presented alongside Suzanne Doyle Guilloud, a researcher based at the Centre for Disability Law and Policy, National University of Ireland Galway and a former Senior Research Associate on BABEL. Their presentation focused on power within best interests decision-making and stemmed from literature reviews of ‘best interests’ that mapped the evolution of the nature and purpose of best interests in law.

Judy began by outlining the key questions for the law workstream of the BABEL project and introduced the ‘Hidden Law Makers’ framework. The premise behind Hidden Law Makers is that understanding ‘judge-made law’ – of which best interests is an example – requires us to look deeper than the cases themselves to the processes and decisions that led to such cases being taken to court, and the relationships between the personnel involved.

Judy then discussed two dominant themes that have emerged from the literature on best interests in a legal context – power and responsibility. Power relations are common within society and human behaviour and evident within both law and medicine, for example, in the sense of ‘state sanctioned’ power. Judy described power in the context of best interests decision-making in three ways: ‘positional’ (power vested in ‘formal roles’, e.g., judges), ‘personal’ (varying hugely person-to-person and connected to the character of the individual), and ‘relational’ (interactive dimension influenced by the ‘site of power’).

Suzanne continued the presentation by describing the evolution of the case law, which gives an indication of power dynamics and the modes and sites of power. First, she gave an overview of the origins of best interests decision-making, which reveals the role of the state/monarch (e.g. parens patriae) and demonstrates ‘positional power’. Suzanne then described the ‘shift’ in power that took place as best interests cases were heard by the courts; the power of medical professionals and the role of clinical judgment seeming to wane, with families instead playing a greater role (relational power) and the courts ultimately holding responsibility for determining what was ‘acceptable’ (positional power). She then discussed the judgment in Aintree, which she suggested represents a fundamental shift in the doctor-patient relationship and in particular, a shift in the relational and personal power of medical professionals with more emphasis on the personal power of the individual.  Finally, Suzanne concluded with an overview of power in the context of cases concerning children, highlighting in particular the scope of ‘parental power’ to make medical decisions on behalf of children.

Finally, Julian Sheather, special adviser in ethics and human rights to the British Medical Association, presented about the challenges associated with best interests decision-making and the tensions that he has observed in this context. Julian opened by linking back to Jakki’s presentation and by remarking that the law applicable to those that lack decision-making capacity is ‘not widely known’ amongst medical professionals, nor is best practice in this area, which he recognised can be a challenge for the BMA. In Julian’s view, one of the important shifts that has taken place is the attempt to shift assessments of best interests away from assessments of ‘clinical best interests’ – in other words, best interests is more than medical best interests. In doing so, Julian acknowledges an issue that has emerged for medical professionals – a tension between autonomy and welfare. Doctors have duties in respect of both, however, the duties regarding welfare are deeply embedded and this can pose difficulties when doctors are being asked to respect ‘prior autonomy’. Julian questioned how one can juggle two such deeply held moral responsibilities.

Julian continued to highlight the importance that is being placed on ‘legal recognition’ in the guidance, which comes from the United National Convention on the Rights of Persons with Disabilities (UNCRPD), however, he acknowledged that many medical professionals find the idea of ‘substituted judgments’ or best interests decision-making never being permissible troubling. Julian views this as constituting both a professional challenge for doctors but also a legal challenge more generally and describes that similar tension (autonomy – promoting biological wellbeing – life saving) as arising once more for medical professionals.

In concluding, Julian linked back to Judy and Suzanne’s presentation and discussed the role of the BMA as an organisation that engages with the development of legislation to ensure that it reflects ‘fundamental moral commitments in medicine’, thereby acknowledging the power of the medical profession in shaping the law. Julian further remarked on the challenges associated with realising the goals of the UNCRPD when there are members of the medical profession that struggle to accept its basic tenets for a variety of reasons, including concern regarding causing ‘harm’ to those who lack capacity. Julian concluded by discussing the development of BMA guidance and the move away from paternalism and deference to the opinion of senior medical professionals and closed by linking back to the ethical tensions inherent in this area of medicine and the law.