Webinar 4 explored international perspectives and approaches to healthcare decisions for people who lack ‘capacity’ or ‘competence’. The speakers were: 

• Micah Hester, Chair of the Department of Medical Humanities and Bioethics, and Professor of Medical Humanities and Pediatrics at the University of Arkansas for Medical Sciences
• Gareth Owen, a Reader at King’s College London and an honorary consultant psychiatrist at the South London Maudsley NHS Foundation Trust
• Aoife Finnerty, a researcher on the BABEL project, based in the Centre for Health, Law and Society
• Emanuele Valenti, a researcher on the BABEL project, based in the Centre for Ethics in Medicine. 

Webinar summary, written by Emanuele Valenti, BABEL team Senior Research Associate (Workstream 1)

Webinar 4 discussed and compared some different perspectives on making best interests decisions in national and international healthcare settings.

The first speaker was Micah Hester, a clinical ethicist and Professor at the University of Arkansas, USA, whose presentation was entitled “(Non-) Sense and Sensibilities: Best interests or Reasonable Interests”. Micah identified respect for autonomy as a primary normative (or moral) force in best interests decision-making. Respect for autonomy is a core value in Western medicine, which protects the rights of patients to make their own decisions, and imposes obligations on healthcare professionals. Healthcare professionals therefore owe a negative obligation to respect autonomy, in the sense of not interfering with a patient’s autonomous decisions and actions, and a positive obligation to support patients in making autonomous decisions and acting autonomously.

Even when a patient lacks capacity, their views and values can nevertheless be taken into account in various ways. The patient might, for example, have made an advance directive indicating the treatment to which they would (or would not) consent. In the absence of such a directive, a decision might instead be made on the basis of what the individual would have chosen if they had the capacity to make the decision (“substituted judgement”). Alternatively, a decision may be made in the patient’s best interests, which Micah suggests (from his perspective) will happen if the patient has not made an advance directive and we do not know their wishes about the decision that needs to be made.

Best interests decisions are, of course, made by someone other than the patient. So what should decision-makers be thinking about when making such decisions? Micah traced some of the American literature exploring this concept and how it has evolved, beginning in 1982, when the President’s Commission provided a general definition of such a principle. The President’s Commission described best interests in terms of doing what, from an objective point of view, appears to promote the patient’s good. This account is echoed in the prominent work of Beauchamp and Childress, who describe four principles of medical ethics, one of which – the principle of beneficence – is directed towards promoting patient benefit and preventing harm, and seeking to ensure that risks and harms are balanced against benefits. There are, however, other ways of approaching best interests decision-making and Micah explored such options as using a “reasonable person standard”, to decide what would be a reasonable decision to make for this patient, or the “current interests standard”, where the decision-maker judges what would be best for the incapacitated person given their current reality and future potential. From here, Micah proposed a “reasonable decision process” for making best interests decisions, which seeks to understand the patient’s present and future situation, identify what, medically, would be best for the patient, then identify the patient’s interests, and finally decide between the available options.

We next heard from Gareth Owen, Reader and Honorary Consultant Psychiatrist at the King’s College London Institute of Psychiatry, Psychology and Neuroscience. Gareth leads the Wellcome Trust Mental Health and Justice Project, which informed his presentation on “Best interests and medical beneficence”. Gareth’s presentation looked back to the professional obligations promoted by ethics codes and professional guidance, and noted how healthcare professionals tend to be motivated by the obligation of beneficence that is central to such sources.

Starting with the Hippocratic Oath, this was seen to include an obligation to benefit the sick, which is echoed in the Oath of Maimonides, in which a doctor is depicted as an ultimate benefactor and medical practice is driven by sympathy for the patient. Moving to the modern history of medicine, William Olser stressed how a good doctor exhibits various core virtues, whilst – coming to the present day – professional guidance like that issued by the General Medical Council makes the care of one’s patient a doctor’s first concern.  

How, then, does the best interests standard fit into this brief history? Gareth noted how, for adults who lack capacity, our modern (legal) understanding comes from the Mental Capacity Act 2005, which offers some factors relevant to making these decisions, but which is not specifically tied to ideas of benefit or beneficence. Recalling some of the history, however, Gareth observed how healthcare professionals will still be motivated by a desire to make a beneficent decision. He suggested that there may be some risks in losing (or losing sight of) this motivating force. To avoid such risks, and to reinstate the importance of making beneficent decisions, Gareth considered whether it would be appropriate either to define best interests in law, or alternatively to expand on what we mean by best interests in guidance for, and training of, healthcare professionals.

Aoife Finnerty, a researcher on the BABEL Project, next presented some findings from a comparative review, entitled “Best interests, Benefit, Will and Preferences: Making Decisions for people who lack capacity across the British Isles”. Whilst BABEL is focused on law and practice in England and Wales, Aoife’s presentation looked to other neighbouring jurisdictions - Scotland, Northern Ireland, and the Republic of Ireland. The comparative analysis aimed to explore approaches towards decision-making for patients who lack capacity, including human rights-based approaches (such as in the UNCRPD). The various jurisdictions shared some features: for example, capacity is assessed functionally, and is decision and time specific. However, significant differences emerged from the comparison of the legal standard in England and Wales and Northern Ireland, which use the best interests standard, and in Scotland and the Republic of Ireland, which use ‘benefit’, and will and preferences respectively.

In Scotland, where reference is made to benefitting the patient, this must be something which cannot be reasonably achieved without a specific intervention. The decision-makers should consider the wishes and feelings of the person and views of others in making a decision. Critics are opposed to using the concept of best interests in Scotland; it is considered to be too paternalistic, in failing to give due weight to the opinions of adults and is considered inappropriate because it extends a concept in child welfare to adults. In Ireland, best interests is also considered paternalistic; instead, following the UNCRPD, decisions should be made in line with the patient’s will and preferences. Aoife concluded her presentation by considering the value of the best interests standard (both in principle and in practice), and noting the growing international trend towards alternative approaches, which focus on the patients’ will and preferences.

Finally, Emanuele Valenti, also a researcher on the BABEL Project, presented “Best interests in decision-making in healthcare: A review of national and international empirical studies”. Emanuele showed the findings of reviews of existing empirical studies of best interests decision-making, both nationally (in England and Wales) and internationally. The national review developed three main themes, which captured: factors contributing to best interests decision-making; best interests decision-making as a process; and barriers and facilitators to making such decisions. The preliminary international review findings focused particularly on the role of communication in making best interests decisions. The international review also highlighted how decision-making is informed by what the patient wants and by what healthcare professionals believe the patient needs. International studies also indicate that distinctions can be drawn between decision-making for adults (which seeks to promote their autonomy, whilst also balancing benefits and risks to them) and decision-making for children and young people (which shares a concern for respecting their autonomy, but which is also guided by concerns about harm to the young patient).