Webinar MasterClass: neuropalliative care and the law – grappling with hard problems

The concept of capacity in healthcare merges legal, ethical, and best practice considerations to create a complex clinical equation.

In this webinar, jointly hosted by the Association of Palliative Medicine, the International Neuropalliative Care Society and the Neurology Academy, speakers discuss the legal framework of assessment, and what ask what best interests decision making means in practice.

Capacity, context, and complexity

Alex Ruck Keen, honorary KC, barrister and professor of law at Kings College London, explained that while there were many misconceptions regarding capacity in healthcare, the majority of assessments were relatively straightforward.

The Mental Capacity Act (MCA) 2005 is a framework for decision making in England and Wales. “The MCA does not explain why people are doing what they are doing, it explains how they can do what they need to do,” he said, adding that practitioners should pause and reflect on their reasoning. “It is important to stop and think why you are doing what you are doing and how the person’s capacity is relevant to that.”

Under the act, a person lacks capacity if, at the relevant time, they are unable to make a decision because of an impairment or disturbance of the mind or brain. This may mean they cannot understand or retain the relevant information, use or weigh that information to reach a decision, or communicate their choice. “It is both decision- and time-specific,” he said, explaining that the act is intended to cover one-off interventions. “What you need to be asking is ‘does this person have capacity to make this particular decision (at this particular time)?’.”

Capacity is not dependent on a diagnosis, he went on, as the act does not require a specific medical condition to be identified. Instead, professionals should begin by asking whether the person can make and communicate a decision with appropriate support. If not, they must then consider whether there is an impairment in brain functioning and whether that impairment explains the person’s inability to decide. Said Alex: “You need to be able to tell that story.”

He also discussed how professionals can reduce unnecessary complexity in capacity assessments. He stressed that practitioners should avoid thinking about capacity in the abstract, instead focusing on the specific decision being made, and try to resolve disagreements. “The biggest reason for unnecessary complexity is lack of agreement between teams about what the person needs to understand, retain, use and communicate,” he said. “Be clear. And if you are not clear, find ways to make yourself clear.”

The concept of fluctuating capacity, while not explicitly defined in the act itself, does appear in the Code of Practice. Alex suggested that many cases described as fluctuating capacity actually involve either different decisions requiring separate assessments or professional disagreement about the person’s understanding or the decision being made. Practitioners should, therefore, carefully consider whether the issue truly relates to fluctuating capacity or whether it reflects misunderstanding of the act’s decision-specific framework.

Another important topic was executive capacity. Some people, particularly those with acquired brain injury may be able to articulate a decision but struggle to carry out the actions needed to implement it. Alex stressed the importance of distinguishing clinical descriptions of impaired executive functioning from legal capacity under the MCA. Simply stating that someone has “impaired executive functioning” is not sufficient. “You need to be able to explain whether the person can understand, retain, use and weigh the relevant information and communicate their decision. And if they can’t, why not?” he said, adding that impaired executive capacity was “not a legally coherent answer”.

Overall, healthcare professionals must balance respect for autonomy and the right not to be interfered with against duties to protect life and health. Effective assessments are achieved by thinking about capacity “in the right way”. They should be criteria-focused, evidence-based, person-centred and non-judgmental,” he concluded.

Best-interests decision making

The MCA also states that, if someone is judged not to have capacity, the decision maker must act in their best interests. The same is true of the 1989 Children Act, which relates to 18s who lack competence or capacity. Professor Richard Huxtable, professor of medica ethics and law at Bristol Medical School, presented findings from a study that looked at how best interests’ decision-making works in practice within healthcare in England and Wales.

Under the MCA, considerations include the person’s past and present wishes and feelings, their beliefs and values, and any other factors they would consider if they had capacity to make the decision themselves, he explained. “It is multifactorial and you put yourself (as the decision maker) in the shoes of the patient.”

The study included in-depth qualitative work with 23 people and 10 focus groups, including patients, relatives, doctors, social workers, and independent mental capacity advocates (IMCAs). They were asked about their experiences of best interests decision making, including who is involved, how decisions are reached, and what helps or hinders the process.

An unexpected finding among adults was a “blurring of the boundary between capacity and incapacity”, said Richard. The law states that capacity should be assumed and only assessed if necessary. Best interests decisions should only be made if capacity is lacking. Yet participants reported that, in real settings, these steps can become intertwined. Some described situations where documentation indicated capacity, but decisions were still made on a best interests basis to reduce perceived risk. Others suggested that the legal distinction between capacity and incapacity can feel artificial, with many situations falling into “grey areas,” particularly when capacity is deemed to fluctuate.

Richard went on to say that decision-making often involves multiple participants playing different roles, and used the metaphor of a orchestra. “There were different views of the different roles, and different views on who should play each role,” he explained. Clinicians sometimes saw themselves as the musicians, working collaboratively, while someone still needed to act as the “conductor”, providing leadership and accountability. However, participants did not always agree on who should hold that role. Parents, patients, and professionals sometimes had different expectations of authority and responsibility, which could lead to tension or disagreement.

Communication difficulties were found to be a major challenge to “making music”, alongside limited resources, staff shortages, and inconsistency around understanding of MCA and how capacity is assessed. Some participants believed the legal framework itself was problematic, while others felt the issue lay more in training and implementation.

Another key finding was that the concept of “best interests” is highly complex, consisting of lots of different factors. Some people interpreted it as a technical legal concept, others as a clinical consideration, and some participants used it as a more general, moral idea. Said Richard: “It can mean different things for different people at different times. We may think we are talking about the same thing, but actually we have very different understandings.”

There was, however, broad agreement on what should be considered in order to make the right decision: the patient’s needs, their previously expressed wishes, potential benefits and harms of treatment, as well as broader considerations about wellbeing. “Everyone involved wants to do the right thing,” explained Richard.

He also noted that clinicians, patients, and families alike all spoke about emotional drivers. While some felt emotions should be acknowledged, saying that healthcare professionals are human and cannot be completely objective, others believed they could interfere with or frustrate rational judgement, and should be carefully managed.

Overall, the study suggested that best interests decision making is multifaceted, collaborative, and often complex in practice. It also identified clear communication, a standardised approach to capacity assessment, adequate resources, and better training as ways to potentially improve the process.

“Best interests might look like two little words, but once you get really under the bonnet of it, you see it's quite a diverse concept and we can sometimes be talking past one another,” he concluded.