By Margaret Doyle and Jaime Lindsey
Introduction
Best Interests is a BBC drama exploring the turmoil of decision-making about healthcare for a critically unwell child. Marnie is a 13-year-old girl who was born with a life-limiting form of muscular dystrophy. The crux of the four-part drama is about how to treat Marnie when her condition deteriorates, having been otherwise cared for at home for most of her life.
Marnie is admitted to hospital due to a chest infection, and subsequently deteriorates, needing resuscitation and ventilation. Several days after her admission she suffers a cardiac arrest and is resuscitated with CPR, but remains unconscious and on a ventilator.
The central legal question that emerges is what healthcare is in Marnie’s best interests, hence the show’s title. Her mother, father, sister and the various treating healthcare professionals all appear to have differing perspectives on what should happen to Marnie; they cannot agree on what is in her best interests. Is further treatment and ventilation causing her harm and prolonging her suffering, or is this episode similar to previous crises, from which she has pulled through to enjoy life again?
While unusual, these high-conflict disagreements do sometimes occur between healthcare professionals, patients and family members, and the show is careful to provide a nuanced and interesting portrayal of the ethical and emotional issues at stake for all those involved.
In this post, we provide some reflections on this portrayal from the perspective of researchers currently looking into these issues (see also our previous post here). We draw out some of the key themes that struck us as pertinent, look at how conflict in these cases can occur, and consider the potential of mediation as a way of helping to resolve them.
Depicting the causes of conflict
A key theme of the show is the way disagreements between families and Health Care Professionals (HCPs) develop and can become entrenched. In episode 1, for example, we see a member of the hospital team invite the parents to a meeting with the senior doctor in charge of Marnie’s case. ‘Invited’ is probably what was intended, but it was received by the parents as, in effect, a summons to meet with the doctor at a specific time and place of her choosing, not theirs, with no indication given of what was to be discussed. That alone can feel disempowering to parents, even ones as accustomed to the ways of the hospital as Marnie’s parents had become, and the sense of dread they felt was palpable.
At the meeting, a palliative care doctor is casually introduced, without apparently any prior discussion having taken place of the possibility of palliative care for Marnie. The depiction of this meeting – a discussion entirely dominated by the medical team’s timing, interests and perspectives – highlights how breakdowns in trust can occur.
Episode 1 also powerfully alluded to the role of resources in these cases, which can be the elephant in the room. The doctor says to the parents, in relation to further treatment for Marnie, that ‘we have to question the cost of that’. This is followed by a statement to clarify that she meant the costs ‘to Marnie’. The parents think that costs of ongoing treatment might be a factor in the healthcare professionals’ approach, whereas the doctor means cost in quality of life for Marnie. This was an issue that was revisited during the trial in episode 4, with the barrister for Marnie’s mother cross-examining the treating clinician on her role in rationing paediatric intensive care beds during the pandemic.
Importantly, the show also provided life and character to Marnie; she is shown playing with her older sister, laughing and dancing, and enjoying a ‘normal’ family life. The realities of family life, in contrast with the hospital settings, were a stark reminder of how HCPs and parents approach the issue from fundamentally different standpoints. A parent will remember their child full of life and getting joy out of everyday experiences, despite their suffering. HCPs, however, will more often only see the child when something has gone wrong, when suffering is more apparent to them than joy or pleasure.
There is another element that contributes to this divide in perspectives. Written by Jack Thorne, whose previous TV dramas include the story of disability rights activists Barbara Lisicki and Alan Holdsworth, Best Interests is also a critique of the ways in which society devalues the lives of disabled people. The show captures how a perception of bias (ableism) feeds into concerns about decisions made by HCPs about issues like continued treatment and resuscitation of disabled patients. Are non-disabled HCPs using ableist measures when assessing the quality of life of a disabled patient?
Furthermore, the drama captures the cumulative anger felt by many parents of disabled children who feel they have had to fight to get the support and health care and even adaptive technology and wheelchairs their children are entitled to. It is important to recognise that the show highlights the impact of this experience on the response of the parents, in particular Marnie’s mother, Nicci. HCPs would be better positioned to anticipate, and respond appropriately to, the response of Marnie’s mother if they truly understand the background of parents fighting for their child to be valued.
Despite characterising Marnie with such life, the most salient missing feature of the show, which may have been intentional by the writers, was the absence of Marnie’s own views about how she should be treated. A court-appointed guardian spoke with individual members of the family and attended the hearing, but if he gave evidence in court, this was not portrayed in the programme. We don’t know what Marnie’s views are on continuing treatment, if her threshold of tolerance is higher or lower than those of her parents, if her assessment of what makes life meaningful reflects theirs. This is often a criticism of medical and legal processes, that they fail to engage with the people most affected by the decisions. While Marnie’s views were not ascertainable during her acute stay in hospital, her views could have been recorded at an earlier stage, while she was still able to communicate effectively. If decision-making in this area is to be improved, a starting point must be to identify early on, and have at the centre of the decision-making process, what the patient herself would have wanted.
Resolution options
Although viewers are aware from the start that the case proceeded to court (the initial scene shows the family outside the court), the drama depicts other approaches to resolving the disagreement. A Clinical Ethics Committee (CEC) meeting is depicted in episode 2. There was no parental involvement in this, which is common practice but also a common criticism. The CEC meeting also revealed some degree of conflict between two of the HCPs caring for Marnie.
Mediation was also highlighted in episode 2 as a potential option for resolving the disagreement. This is often suggested in these cases due to the problems with litigation, something evident in episode 4 with the adversarial nature of court brought to the fore. However, the way mediation was introduced unfortunately reflected many misconceptions.
First, it was initiated by the treating clinician, so it is perhaps understandable that the family had reservations about its use. The mediator meets with Marnie’s parents at home and describes mediation as a way to challenge how people are thinking, but Nicci interprets that as ‘making me ok with your decision’. Mediation is sometimes seen by parents as a mechanism for persuading them of the hospital’s views. Making mediation genuinely an option that parents are aware of and can initiate might help alleviate some of these concerns about bias and power. However, misperceptions about mediation stem from other life experiences and are harder to counter. For example, Nicci also has experience of a workplace mediation (which she also refers to as arbitration) which was unsatisfactory, leading her to distrust mediation in the context of Marnie’s treatment.
Our research on mediation (discussed further below) will hopefully shed some light on how mediation might be used in these cases to good effect.
Conflict, mediation and the way forward
It is not possible to remove all conflict from life. People will reasonably disagree about what should be done in any given situation, none more so than life-or-death cases concerning children. But is it possible to reach some form of joint understanding, or even agreement, between people when so much is at stake? How can one consider shifting on questions of professional ethics (for the doctors) and on prematurely ending a child’s life (for the parents)? The association of mediation with compromise and ‘splitting the difference’, as it is so often portrayed in commercial disputes, is inappropriate in these healthcare conflicts.
The show is accurate in flagging up mediation as an option; it is also accurate in depicting its rejection by parents. Mediation has been proposed as a better way forward to resolve these difficult conflicts – it is one element of improvements set out in the proposed Charlie’s Law [i] after the Charlie Gard case – but our understanding is that it has rarely been attempted in the cases that ultimately end up in court.
In a recent literature review produced for the Nuffield Council on Bioethics, mediation is allocated a short section – perhaps reflecting the lack of evidence on its use in these contexts. That review suggests that mediation may be appropriate in some contexts involving ‘moderate’ conflict; that used early on in such circumstances, it can promote inclusion and identify mutual interests. One concern highlighted, which is reflected in Marnie’s mother’s reaction in Best Interests, is that parents have unequal power because in cases involving a hospital view that further treatment is futile, ultimately courts will always decide for the health professionals. Mediation then is seen by parents as merely an earlier opportunity to uphold the hospital’s view, but by way of persuasion rather than judicial determination.
Indeed, mediation is a very different approach to exploring conflict than the adjudication used by courts. Mediation is a non-judicial form of dispute resolution that is voluntary, flexible, informal, confidential and party-led. Any agreements – or indeed a decision not to agree – is made jointly by the parties, not by the mediator. It prioritises communication and understanding rather than the assessment of hard evidence. A particular benefit of mediation is that it can help to improve communication by bringing people together, and in this way facilitating better understanding of issues and perspectives and enabling all individuals to feel heard as participants, something which parents sometimes think is not done effectively in healthcare.
There are other potential benefits of mediation – for example, it tends to be less costly than court proceedings and can be quicker. It can also be tailored to individual needs – for example, it can take place over multiple days, over the phone/online and in various locations, and it can use specialist expertise to facilitate the participation, direct or indirect, of the patient where possible. It can generate creative solutions through collaboration, and it can result in de-escalating conflict even where disagreement remains. Mediation can also be valuable in reaching an agreement on arrangements for withdrawing treatment following a court order, to help with decisions on the issues faced by the family in Best Interests.
Despite the promises made for mediation, we do not have a strong evidence base for its use in these cases, and further research is underway to consider what potential benefits and risks it might have.
We have been researching the use of mediation as an alternative way to resolve medical treatment disputes. This research will consider whether there are any therapeutic, or healing, benefits of using mediation to resolve disputes that arise from health and care contexts, as well as considering the ways in which mediation could become more therapeutic as an intervention. We look at cases involving children (similar to those discussed in Best Interests) as well as cases involving adults under the Mental Capacity Act 2005. As part of this research, the team will be observing medical mediations, as well as interviewing and surveying mediation participants.
The study is now recruiting participants for this exciting research project, and we would like to hear from mediators, healthcare professionals, patients and family members who have been involved in mediations of medical treatment disputes. We hope that by gathering more evidence about the role of mediation, its potential benefits can be made available to those who, like Marnie and her family, find themselves in these challenging situations in the future.
If you would like to take part or want to know more about our research, please contact Dr Jaime Lindsey, Principal Investigator of this ESRC-funded research at j.lindsey@reading.ac.uk and on Twitter @meddisputes or Margaret Doyle at mdoyle@essex.ac.uk.
[i] An initiative of the family of Charlie Gard, a baby who died after a high-profile court case to resolve a disagreement about withdrawing life support. See here for more.
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