Medical Law and Ethics

Decoding Historical Power Struggles and Shifting Paradigms in Assisted Death: In Conversation with Dr. Rees Johnson

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Assisted death remains a complex and polarising issue. On one hand, proponents highlight the need to preserve dignity in dying calling for a more compassionate response to the law. Opponents object, emphasising concerns about diminishing the sanctity of human life, the risks of introducing a slippery slope, and highlighting negative impacts on the doctor-patient relationship. The debate around assisted death is staggering which begs the question: what more could be said of the problem of assisted death that has not been said 100 times over?

For Dr Rees Johnson, there is an important underlying context that is essential to future reform attempts. Dr. Johnson is a Lecturer at the Essex Law School. His research interests include end-of-life matters and the racial/cultural contexts of end-of-life care. He teaches Medical Law and Property Law. Rees recently concluded his PhD: Situating Medical Power within the Modern (Legal) History of Assisted Death: 1936 – Present.

The Research Visibility Team interviewed Dr. Rees Johnson to find out more about his thesis and research.

In layman’s terms, what is the problem your research aims to fix and how would you describe your contribution to your subject area?

My PhD was borne out of frustration. The frustration I had was with the state of the academic debate and how I felt the way the problem of assisted death was being debated. After conducting an extensive literature review, I felt that the conventional framing of assisted death as a legal and/or ethical problem created a cyclical effect. Ethical and legal discourses have been deployed to advocate reform; and yet the same ethical and legal discourses have been inverted to argue the opposite. Rinse and repeat for nearly 100 years.

Considering this circular argumentation, how could the law progress when it is hindered by uncertainty and indeterminacy? What is the function of this uncertainty and indeterminacy? Who stands to benefit from this uncertainty and indeterminacy? What strategies have been deployed to preserve this uncertainty and indeterminacy? These were some of the questions I felt needed answering.

By adopting a critical historical analysis inspired by Michel Foucault, I examined the legal history of assisted death to determine whether something else was going on beneath the conventional framing.

I came to realise that the legal developments of assisted death have been constrained by an underlying tension: the tension between preserving medical power and authority on the one hand; and subverting it on the other.

My PhD therefore mapped out the ways this tension has played out. Using a historical frame, it charted the interest-driven strategies, interpretive struggles, and discursive practices of institutional actors (judges, lawyers, academics, medical professionals etc.) as well as the impact of these on the legal development of assisted death.

If your thesis was a front-page story in a newspaper, what would be the headline?

Facing the Challenge of Medical Power: A Call for Assisted Dying Law Reform

What inspired you to delve into the intersection of law, ethics, and power dynamics within the context of assisted death?

My background is in environmental law, having done Law with Environmental Science LLB at Northumbria University in 2014 and an LLM in Sustainable Development and Environmental Regulation at Newcastle University in 2016. I wrote my LLM dissertation on the legal rights of nature and the need for a pragmatic middle-ground.

During the LLM, I was introduced to the work of Michel Foucault when I studied ‘Critical Geopolitics’ in the Politics Department at Newcastle University, following a three-month trip to Israel in 2015. This introduction changed my worldview about pretty much everything – especially the law, and the way law supports and fosters power relations to the detriment of those at the margins.

After the LLM, I received a £30,000 funding package from Newcastle University to develop a SmartBot that could write a will for the purpose of estate planning. It was here that I became interested in death and dying. This seems like an unusual trajectory, but the PhD is simply a meeting of these two worlds.

Your thesis employs a critical historiographical method inspired by Michel Foucault. What key insights does this approach offer that traditional legal and ethical frameworks might overlook?

I think adopting a method of legal analysis that moves away from concentrating on formal modes or structures of power and authority is important. Foucault teaches us to consider the underlying, subtle ways in which power is exercised that are not immediately obvious, such as through discursive practices like medicalisation and expertise. In parliamentary debates or case law on assisted dying, it is difficult to unsee how politicians and judges help to legitimise and uphold these techniques.

The methodological approach was also helpful in that it allowed for the explication of power relations inherent in the development of legal knowledge and how this unfolds over time. Legal knowledge is not neutral but historically contingent and situationally negotiated through a constellation of power relations. This helps us to adopt a more critical approach to the development of legal knowledge and legal ideas.

Your thesis suggests the need to draw a line as a matter of policy to avoid conferring too much power and authority to the medical profession in the context of assisted death. Could you elaborate on potential alternative approaches or policies that could genuinely empower patients while ensuring a balance between autonomy and medical authority? What considerations should future proposals take into account?

In my PhD, I argue that the reason the law has not changed is that current and historic proposals would undermine the status quo of medical power and authority.

The issue the medical profession has had with reforming the law is that reformers have proposed bringing in third parties, such as referees/judges, into proceedings. As long as these safeguards remain, the dominant medical culture will remain opposed where external involvement risks undermining its professional autonomy. These are too explicit terms, however. Often you will hear about the need to preserve the doctor-patient relationship which seems noble. However, the foundation of this power relationship is trust; and trust is essential to maintaining the professional autonomy of the medical profession. It is from this autonomy that the profession derives its power and authority. 

To circumvent this, I drew upon the work of Suzanne Ost and Margaret Brazier to propose de-medicalising assisted death to enable people to have an assisted death beyond the grip of medical power and authority. I see no reason why assisted death needs to be within the domain of medical practice. There are important policy/social reasons why we might not want to extend the power of the profession to encompass power and authority over death itself. For that reason, I would reject the need to strike a balance between patient autonomy and medical authority.

Reflecting on your research journey, what challenges did you encounter in examining the historical contingency and power relations surrounding assisted death?

The project was a huge undertaking. The debate in Britain is nearly a century old. There have been a lot of shifts in the debate, its discourses, and the range of institutional actors that have emerged within the debate at different historical points. Trying to capture this in 80,000 words meant I had to be very selective. A lot of my ‘darlings’ had to be killed, and so learning to let certain ideas or contexts go was difficult.

The biggest hurdle was attempting to incorporate Foucauldian philosophy into an ethico-legal analysis of assisted dying. I faced difficulties trying to convince others of the value or utility of my theoretical and methodological choices especially those who have fed into the conventional frame.

My critical approach is not traditional within the bioethical intellectual space. Whilst others were saying assisted death is a legal problem, or an ethical problem, I was arguing that the frameworks of law and ethics occlude an underlying context –– that assisted death is better problematised as a problem of ideology, of power.

The preservation of medical power and authority is the root of the failure of past reform attempts. In knowing this, future reform attempts can concentrate their efforts on new points of resistance that can overcome the constraining effects of medical power and authority.

Now that you submitted your thesis, how do you plan to move forward in terms of your research?

Having examined the ways in which medical power and authority have shaped legal developments of assisted death, I am now keen to examine the other aspect of the power relationship: the patient.

I am interested in those patients who are more susceptible to the effects and constraints of medical power and authority.

Currently, I am exploring the racial and cultural contexts of assisted dying reform and how changes in the law might impact people of colour and, importantly, what we ought to do about this.

Best Interests, Conflict and the Role of Mediation in Medical Treatment Disputes

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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.

The Legalisation of Assisted Dying: The Experts’ View

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By Louise Millescamps, Essex Law School

La légalisation de la mort assistée, un sujet sociétal au cœur des débats

Ces podcasts correspondent à la deuxième partie d’un projet de recherche sur la légalisation de la mort assistée en France et en Angleterre. Après avoir publié un article décrivant les lois actuelles dans les deux pays et les raisons de chacun de refuser la légalisation de la mort assistée, j’ai eu l’opportunité d’interviewer deux expertes sur ce sujet et d’engager la discussion quant à l’état de la législation actuelle et ses possibles évolutions. Nous avons également abordé d’autres questions comme la responsabilité de l’équipe médicale dans le cadre de la mort assistée.

Aujourd’hui, ces discussions sont d’autant plus importantes qu’en France, le débat sur la législation de la mort assistée est d’actualité. Le 13 septembre 2022, Jean-Luc Godard, cinéaste franco-suisse, a délibérément mis fin à ses jours grâce au suicide assisté, une pratique légale en Suisse. Le même jour, le Comité Consultatif National d’Ethique a rendu un avis sur la fin de vie ouvrant la voie à une «aide active à mourir». Une convention citoyenne sur la fin de vie va également être prochainement organisée. Alors que les discussions sur la fin de vie prennent de plus en plus d’importance, il paraît crucial d’en apprendre davantage sur la législation en vigueur et ses possibles évolutions.

Le premier podcast est une interview de Sabine Michalowski, Professeure de Droit à l’Université d’Essex, co-directrice du projet: Essex Transitional Justice Network. Elle est aussi membre du Human Rights Centre et du Essex Autonomy Project.

Le deuxième podcast contient une discussion avec Aurore Catherine, maître de conférences en droit public à l’Université de Caen Normandie, membre de l’Institut Caennais de Recherche Juridique et présidente du groupe de Réflexion Ethique du Centre de Lutte contre le cancer François Baclesse.

Ces deux podcasts, bien qu’ils traitent des mêmes sujets, présentent deux points de vue différents.

Dans son interview, Madame Catherine commente la loi en vigueur en France. Elle rappelle que le but de cette loi est de soulager les souffrances. Selon elle, il faudrait d’abord s’assurer que cette loi est bien appliquée avant de se pencher sur la légalisation de la mort assistée:

«En 2015, une critique a été soulevée: notre législation était philosophiquement, éthiquement bien fondée, simplement on n’arrivait pas à l’appliquer parce qu’elle était insuffisamment connue des soignants, insuffisamment connue du grand public».

Concernant Professeure Michalowski, il lui semble important de se focaliser non pas sur l’application de la législation actuelle mais sur la nécessité de légaliser la mort assistée. Selon elle, il serait préférable d’adopter une nouvelle loi plutôt que de se reposer par exemple sur l’«état de nécessité», un moyen de défense utilisé lors de certains procès mais qui se révèle «totalement imprévisible». Pour Professeure Michalowski, il est important de laisser le choix aux individus et de leur permettre ainsi de décider de leur vie comme de leur mort. Elle affirme à cet égard que: «Pour certaines personnes, une meilleure fin de vie serait d’avoir accès à la mort assistée».  

Interview with Dr. Catherine
Interview with Prof. Michalowski

The Legalisation of Assisted Dying

These podcasts are the second part of a research project on the legalisation of assisted dying in England and France.

In the first interview, I had the honour of talking to Sabine Michalowski, Professor of Law at the University of Essex, co-director of the Essex Transitional Justice Network and a member of the Human Rights Centre and the Essex Autonomy Project. 

In the second interview, I had the opportunity to interview Aurore Catherine, Lecturer in Public Law at the University of Caen Normandie, member of the Institut Caennais de Recherche Juridique and President of the Ethical Debate Group at the François Baclesse cancer centre.

In both podcasts, we are going through different themes on the topic of assisted dying. Similar questions are asked to both interviewees in order to grasp the differences between both jurisdictions.

From the definition of dignity at end of life, to the powers of the courts and the physicians’ responsibilities, we discuss the challenges associated with the legalisation of assisted dying. 

Although dealing with the same topic, the two podcasts present two different points of view.

In her interview, Dr. Catherine focuses on the current legislation in France. She recalls that the purpose of the law is to relieve suffering. According to Dr. Catherine, it would first be necessary to apply this law properly before debating on legalising assisted dying:

“In 2015, a criticism was raised: our legislation was philosophically, ethically well-founded, however, we could not apply it because it was insufficiently known to caregivers, insufficiently known to the general public”.

For Prof. Michalowski, the importance of the debate lies in the legalisation of assisted dying. According to Prof. Michalowski, adopting a new law would be a better option than relying for instance on the defence of necessity, a means of defence used in some trials but which turns out to be “totally unpredictable”. She focuses on the idea that it is important to ​​leave everyone to choose and decide about their own life and death. In this regard, she says that “for some people, a better end of life would be to have access to assisted dying”.

Interview with Dr. Catherine
Interview with Prof. Michalowski

Mental Capacity Law in Contract and Property Matters

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By Jaime Lindsey and Benjamin O’Connell

Mental capacity law could impact all of us at some point in our lives. When a person’s decision-making capacity becomes impaired, it can lead to a best interests decision being taken on their behalf under the Mental Capacity Act 2005. A best interests decision could be taken by professionals caring for the individual, those with authority to do so such as Deputies, or the Court of Protection (CoP). While health and welfare decisions in mental capacity cases have been increasingly researched, the jurisdiction relating to property and affairs has had much less scrutiny, despite it making up a significant proportion of the CoP’s workload.

Given this gap in focus, the University of Essex School of Law and Human Rights Centre are hosting a hybrid event on 5 October 2022 in conjunction with the Mental Diversity Law Network (MDLN). The MDLN is an interdisciplinary network of approximately 200 people with academic, professional and/or lived experience of mental differences or difficulties, caregivers and other stakeholders with an interest in the law as it relates to mental diversity.

The event will bring together a range of academics, practitioners, individuals with lived experience and others to discuss the role of mental capacity law in helping individuals to manage their property and finances. The event will consider a wide range of issues, including the capacity to contract, capacity to make a will, supported decision-making and safeguards to protect against financial abuse.

The event will consist of two panels.

The first will discuss the role of support in managing property and finances, including issues that arise under the United Nations Convention on the Rights of Persons with Disabilities. This may include practical barriers individuals face, access to documentation and general accessibility of support and benefit services, as well as what legal responses can be operationalised to better secure support. Speakers on this panel include Clíona de Bhailís from the National University of Ireland, Galway, Professor Rosie Harding of the University of Birmingham, and Support Workers from Outside Interventions, Shonaid and Andy.

The second panel will discuss the role of mental capacity law in England and Wales in this area and include three speakers. John Howard, a lawyer in the Property and Affairs Team of the Official Solicitor and Public Trustee; Gareth Ledsham, Partner at Russell Cooke; and Her Honour Judge Hilder Senior Judge of the Court of Protection.

This free event will be held Wednesday 5 October 13:00 – 17:00 at Wivenhoe House Hotel, Colchester, as well as online via Zoom. Please register in advance here. The organisers welcome questions and interaction from audience members and any queries about the event can be directed to Dr Jaime Lindsey at j.t.lindsey@essex.ac.uk.

Mediating Conflict Between Families and Doctors

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Jaime Lindsey and Margaret Doyle, University of Essex, School of Law

Fundamental disagreements between healthcare professionals and family members about the life and death of loved ones are, thankfully, relatively rare. It is even rarer for those disagreements to be resolved through the courts. The Archie Battersbee case has, however, brought this issue to the fore in recent weeks. For his family, their fight on his behalf was played out on the media stage at every turn. It ended in the 12-year-old boy’s death in hospital on 6 August 2022, a devastating outcome for his family. This followed several hearings culminating in an appeal to move him to a hospice being refused by the courts.

Others have already commented on the legal issues arising from that case, centring mainly on the best interests of the child. While we are sympathetic to the view previously put forward by others such as Dominic Wilkinson, and Cressida Auckland and Imogen Goold, of an alternative to the use of the best interests test in cases like these, for example the use of a significant harm threshold, that substantive legal discussion is not the aim of this piece.

Instead, our aim here is to consider whether, when these disputes do arise, there might be better ways to resolve them than going through the courts. For many, the court process is expensive, time-consuming, adversarial and, psychologically and physically exhausting. It is also uncertain, because the parties on both sides of the conflict must await an outcome determined by a third party, the court.

As a result, it has been suggested that mediation might be a better way of approaching these issues when they first arise, not least by Mr Justice Francis in the Charlie Gard case, who remarked that the case was calling out for mediation:

‘I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions‘.

Para. 20

Yet despite increasing emphasis on mediation in other broadly similar areas, including family law and clinical negligence, there is limited evidence about its use in medical treatment cases. Furthermore, in medical treatment disputes the aims of the mediation might not be, as they are often in these other areas, settlement rates and cost savings; mediation may require a different approach that instead prioritises the experiences of participants and the potential for a therapeutic outcome.

The use of mediation to resolve medical treatment disputes is the focus of a research project led by Dr. Jaime Lindsey with consultancy from Margaret Doyle and Sarah Barclay, funded by an ESRC New Investigator Grant. 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.

The research seeks to test, empirically, the various claims about mediation through qualitative analysis of mediation in medical treatment disputes, covering cases involving children (similar to those involving Charlie Gard and Archie Battersbee, for example) and cases involving adults under the Mental Capacity Act 2005 (similar to cases such as that of Aintree v James as well as wider health and care decisions). How best to resolve these disputes was also the topic of a project led by the Nuffield Council on Bioethics – Disagreements in the Care of Critically Ill Children – and is being looked at by the UK government, which in the Health and Social Care Act 2022 committed to undertaking a review into how to resolve disagreements in the care of critically ill children and to report within one year.

What is Mediation and Why Might it Help?

Mediation is one type of ‘alternative dispute resolution’ (‘ADR’), which is generally seen as more informal and flexible than court proceedings and has several perceived benefits for those who take part. For example, it can improve communication between parties, enable individuals to feel heard as participants and increase the speed of resolution. It also tends to be less costly than court proceedings and can take place in parallel, meaning that no delay is needed should those involved not reach agreement at mediation. However, cases involving medical treatment disputes, especially involving children, are highly emotive, often involve life and death issues and have evident power imbalances between family members and healthcare professionals, meaning that mediation is not always seen as appropriate. Furthermore, for mediation to work, all parties must voluntarily agree to its use, which is not always possible.

Despite the drawbacks, mediation might help family members come to terms with the issues at the heart of the dispute and help healthcare professionals fully understand family members’ perspectives. The realisation as a parent that you are not legally the final decision maker for your own child can be shocking and lead to a feeling of powerlessness in the interactions with healthcare professionals. It can take time and careful discussion to digest the realities when faced with your seriously unwell or dying child.

Conversely, healthcare professionals may benefit from hearing directly from the family, in a neutral venue, over a period of time, away from the realities of the hospital ward. For both parties, then, mediation might provide an opportunity to hear from and be heard, in a way that is not possible in the ordinary course of the provision of healthcare.

Yet mediation is not a cure-all to the difficulties that arise in these disputes, and it should not be discussed as such. Nor should it be seen as a route to compromise, something neither party in medical treatment disputes could countenance when issues of life and death are at stake.

In such contexts, the ‘stereotypical image of a mediated settlement model, often characterised in terms of a confidential carve-up borne of an unseemly horse-trade, need not apply. Mediation is a flexible tool, in which the ground rules and outcomes can be dictated by the nature of the dispute and the priorities of the parties.’[1] Unlike in clinical negligence disputes, the remedy sought in medical treatment cases is not a financial settlement, requiring a different ‘sensibility’ of mediation than that commonly used in civil and commercial claims.

One of the concerns, raised by Supperstone et al and other public lawyers, is the confidentiality of mediation when used in disputes with a wider public interest. It is important to draw a distinction between the confidentiality of the mediation discussion and the confidentiality of any agreed outcome. The former is the default position for most mediations, to allow for frank and honest exchange between the parties. The latter, however, is for the parties to agree, and in mediations involving a wider public interest, the parties can agree on a shared public statement on the mediation outcome.

Mediation in medical treatment disputes should be seen as providing a much-needed neutral space for careful discussion between parents and family members and the healthcare professionals, mediated by an independent and highly skilled facilitator. Working with the parties, the mediator tailors all aspects of the mediation process to the needs of all those involved and ensures each voice is heard. Getting the appropriate people to the mediation is important so that questions can be answered, interests explored and, where appropriate, consensual agreements reached on ways forward.

Mediations are often highly emotive meetings, and no more so than in this context. Crucially, any outcomes are ones the parties themselves have decided on, and in that way they are active participants reaching collective decisions. Where the parties in dispute must maintain an ongoing working relationship, this can be invaluable.

What’s the Evidence?

Despite the perceived benefits of mediation and the wide-ranging evidence from other fields, there is currently only limited evidence about its use to resolve medical treatment disputes. There is some evidence about mediation’s use in the linked areas of resolving paediatric conflict, adult care mediation and an interview study with participants in mental capacity law mediations, see Reimagining the Court of Protection: Access to Justice in Mental Capacity Law. Otherwise, the data on mediation’s use is incomplete.

As part of our current research on medical treatment mediation, we will be conducting direct observations of mediations, as well as interviewing and surveying mediation participants. Our research will provide much-needed evidence as to whether mediation does provide a more therapeutic way of resolving medical treatment disputes, and if so, in what ways.

What Next?

The discussion about how best to resolve disputes between healthcare professionals and families will no doubt continue, with some advocating for greater parental rights and others maintaining that the current law is well suited to resolving these matters. What is clear, however, is that the legal process can reinforce disagreement and entrench positions.

Perhaps a different way of approaching healthcare conflict is required – one which values giving all parties the time and space to engage in early communication and to seek agreement on their own terms, with a neutral third party guiding them.

Yet the risks in using mediation are numerous: it is relatively empirically untested as a way of resolving these cases specifically (although the evidence is strong in other fields); it may lead to the interests of one of the parties being prioritised over the other’s; it may cause delay and lead to prolonged suffering for the patient; it may be felt by families that mediation is used merely to persuade them into agreement with the healthcare professionals; it may fail to prioritise the voice of the patient herself.

Using mediation to resolve these cases will not be a panacea. However, its potential is worth considering, and we aim to shine a light on it as a tool for helping to resolve these difficult cases in a more therapeutic way.

If you would like to know more about our research project looking at the use of mediation in medical treatment disputes, please contact Dr Jaime Lindsey, the Principal Investigator, at j.t.lindsey@essex.ac.uk.

[1] M. Supperstone, D. Stilitz and C. Sheldon, ‘ADR and Public Law’, (2006) Public Law Summer, 299-319, p. 313.

La Mort Assistée: Un Sujet Au Cœur Des Enjeux Juridiques Et Sociétaux

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By Louise Millescamps, University of Essex, School of Law

L’ auteur tient à remercier Dr Laure Sauve, Eugénie Duval et Dr Xavier Aurey pour leurs précieux commentaires sur les versions précédentes de cet article.

Le 16 octobre 2021, David Peace, un malade en phase terminale affirme que «la législation anglaise l’a abandonné». Diagnostiqué en 2019 d’une maladie affectant sa motricité, ce Londonien a voyagé en Suisse afin de pouvoir bénéficier d’une fin de vie digne et sans crainte de douleurs «intolérables». La législation anglaise refuse, en effet, aux personnes en fin de vie de recourir au suicide assisté. En France, la mort assistée est aussi illégale. Le 5 février 2022, un homme français de 55 ans a été arrêté après avoir assisté sa mère de 94 ans dans sa mort. Il a expliqué souhaiter mettre fin à la «situation de plus en plus indigne de sa mère». Selon son avocat, ce fils a été le «témoin d’un processus de déshumanisation» et n’a fait qu’agir à la demande de son parent.

Il est intéressant de comparer ces deux pays qui refusent la légalisation de la mort assistée afin de mieux comprendre les arguments des législateurs. En effet, en France comme en Angleterre, la mort assistée (qui englobe le suicide assisté et l’euthanasie) est réprimée pénalement. Le suicide assisté est une pratique par laquelle le patient met fin à sa vie grâce à des moyens ou grâce à un environnement particulier qui lui ont été fournis par une tierce personne. En France, il est associé à la non-assistance à personne en danger puisque l’on considère que la personne tierce n’a pas porté secours à une personne en détresse. Cette personne tierce peut être condamnée à 5 ans d’emprisonnement et 75 000 € d’amende. En Angleterre, cette pratique est condamnée par le Suicide Act 1961 qui par sa section 2 condamne toute action encourageant ou assistant au suicide. La peine, beaucoup plus sévère, peut aller jusqu’à 14 ans d’emprisonnement.

L’euthanasie est quant à elle une pratique par laquelle une personne tierce met elle-même fin à la vie du patient avec son consentement par l’injection d’un médicament pas exemple. En France, elle est associée à l’homicide volontaire qui est puni de 30 ans de réclusion criminelle (Article 221-1 du code pénal), tandis qu’en Angleterre, l’euthanasie est associée à un meurtre ou un homicide involontaire, passable d’un emprisonnement à vie. De ce fait, les personnes euthanasiant un patient en fin de vie risquent, en Angleterre, l’emprisonnement à vie.

Les systèmes juridiques français et anglais refusent donc la légalisation de la mort assistée. Cependant, de nombreuses affaires ont permis à la législation d’évoluer vers une meilleure prise en charge de la fin de vie par une légalisation des soins palliatifs, «des soins actifs et continus [visant] à soulager la douleur, à apaiser la souffrance psychique, à sauvegarder la dignité de la personne malade» (Article L.1er B. de la Loi n° 99-477 du 9 juin 1999 visant à garantir le droit à l’accès aux soins palliatifs). En France, l’euthanasie passive, définie par le Sénat comme l’arrêt d’un traitement nécessaire au maintien de la vie avec pour intention la mort du patient, est aussi mieux reconnue.

L’objectif de cet article est donc de présenter l’évolution du droit français et anglais sur la fin de vie (I) ainsi que les arguments mis en avant par les législateurs pour refuser de légaliser la mort assistée (II).

I. L’évolution limitée de la loi anglaise et française

L’évolution de la législation française et anglaise est partagée entre un refus de légaliser la mort assistée et une volonté d’améliorer la prise en charge de la fin de vie. En France (1), comme en Angleterre (2), des affaires ont permis de grands changements dans la loi: la reconnaissance des directives anticipées et la possibilité de refuser l’hydratation et l’alimentation artificielle. De plus, la France est le premier pays à légaliser la sédation longue et continue, permettant une reconnaissance implicite de l’euthanasie passive.

1. Vers une tolérance de l’euthanasie passive en France

En France, la première affaire qui a influencé la législation fut l’affaire Vincent Humbert en 2003. Vincent Humbert a été victime en 2000 d’un accident de la route le rendant tétraplégique, muet et aveugle. En 2003, sa mère, aidée par un médecin, provoqua la mort de son fils. Ceci a poussé le législateur à adopter la loi Leonetti le 22 avril 2005 relative aux droits des malades et à la fin de la vie. Cette loi a parachevé les soins palliatifs grâce aux directives anticipées, c’est-à-dire la possibilité pour une personne d’exprimer dans un document écrit ses vœux quant aux décisions médicales à prendre en fin de vie, document qui doit être renouvelé tous les trois ans. Cette loi a également interdit l’obstination déraisonnable ou «acharnement thérapeutique». Il s’agit de soins inutiles, disproportionnés ou ayant pour seul but le maintien artificiel de la vie (Article 2 de la Loi n° 2016-87 du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie). Cette interdiction permet d’introduire un droit au «laisser mourir» permettant au patient qui refuse tout traitement médical de voir sa volonté respectée par le corps médical même si ce choix met sa vie en danger. Cela signifie par exemple qu’un patient souhaitant arrêter ses traitements médicaux, comme un médicament permettant de soulager les douleurs, peut le demander afin de précipiter la fin de sa vie.

Une deuxième affaire qui a permis une évolution de la loi française est l’affaire Vincent Lambert. Après un accident de la route, cet homme s’est retrouvé dans un coma végétatif. En 2013, c’est-à-dire six ans après l’accident, le médecin chargé de s’occuper de Vincent Lambert conclut à un acharnement déraisonnable et décide d’arrêter l’alimentation artificielle de Vincent Lambert. Cependant, les parents de Monsieur Lambert s’opposent à cette décision du médecin et il s’ensuit une longue procédure judiciaire. En 2019, les traitements de Vincent Lambert sont arrêtés et il décède quelques semaines plus tard. C’est à la suite de cette affaire très médiatisée que le législateur adopte la loi Claeys Leonetti du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie. Selon cette loi, le médecin droit respecter la volonté du patient exprimée dans des directives anticipées et, la nutrition et l’hydratation artificielles constituent des traitements médicaux qui peuvent être arrêtés (article L. 1110-5-1 alinéa 2 du code de la santé publique). Enfin, cette loi a aussi introduit la possibilité pour le patient de demander la sédation profonde et continue jusqu’à son décès, renforçant le droit « au laisser mourir » du patient. Avec ce dernier élément, le législateur semble tolérer l’euthanasie passive même s’il estime que l’intention de la sédation profonde et continue n’est pas de donner la mort mais de soulager la douleur alors qu’une mort est imminente et inévitable. Ainsi hâtée, la mort est justifiée par le soulagement de douleurs insupportables.

La France est le premier pays à explicitement légaliser la sédation profonde et continue. Toutefois, l’utilisation de ce droit demeure soumise à des conditions strictes, c’est pourquoi plusieurs propositions ont été avancées pour repousser ces limites voire légaliser la mort assistée. Mais le législateur continue depuis 2016 à rejeter les différentes propositions. Ainsi, a été rejetée la proposition de loi relative à l’euthanasie et au suicide assisté pour une fin de vie digne déposée le 20 décembre 2017 à l’Assemblée nationale qui aurait permis à toute personne souffrant de douleurs insupportables de bénéficier d’une euthanasie ou d’un suicide assisté. De même, la proposition de loi portant sur la fin de vie dans la dignité déposée le 27 septembre 2017 et visant à instaurer une assistance médicalisée active à mourir pour toute personne souffrant d’une douleur physique ou psychique incurable a elle aussi été rejetée. Enfin, récemment, une proposition de loi visant à garantir et renforcer les droits des personnes en fin de vie a été déposée le 26 janvier 2021. Elle aurait introduit le principe de l’assistance médicalisée active à mourir, sans pour autant définir explicitement dans la loi les modalités pratiques de cette assistance. Elle n’a pas non plus abouti.

Ainsi, le législateur français a essayé d’étendre le plus possible la notion de soins palliatifs dans la loi afin d’assurer une mort digne aux patients en fin de vie sans pour autant légaliser l’euthanasie et le suicide assisté.

2. En Angleterre, le refus du législateur de légaliser tout type de mort assistée

En Angleterre, le Mental Capacity Act de 2005 permet aux patients de recourir aux directives anticipées ainsi que de demander la cessation des traitements médicaux qui comprennent l’hydratation et l’alimentation.

Les mesures sur les directives anticipées ont été introduites à la suite de l’affaire Re C [1]. Dans cette affaire, s’est posée la question de la capacité du patient atteint de schizophrénie paranoïaque à donner ou retirer son consentement pour un traitement médical. Cette capacité à refuser un traitement médical a donc fait écho aux situations des personnes en fin de vie qui deviennent incapables d’exprimer leur consentement à cause d’une maladie. La Law Commission a donc décidé d’introduire la possibilité pour le patient de recourir aux directives anticipées.

De plus, grâce à l’affaire Airedale NHS Trust v Bland, le Mental Capacity Act de 2005 a établi que l’alimentation et l’hydratation artificielles constituaient des formes de traitements médicaux qui peuvent être refusées par le patient. Dans cette affaire, un homme, Tony Bland, a subi un accident qui l’a plongé dans un coma végétatif. Ses parents ont demandé que soient arrêtés les traitements dont l’hydratation et l’alimentation artificielles. La cour a accueilli la demande des parents puisqu’il n’y avait aucun espoir de rétablissement.

L’Angleterre a donc adopté une position similaire à la France concernant les directives anticipées et la possibilité de refuser tout traitement notamment l’hydratation et l’alimentation artificielles. Mais contrairement à la France qui a été le premier pays à légiférer sur le droit à la sédation profonde et continue à la fin de la vie, en Angleterre, cette possibilité n’est prévue par aucune loi. Pourtant, la sédation profonde et continue est utilisée par les médecins dans près de 17% des cas de décès des patients. Elle est considérée par tous comme une forme légale de soulagement des douleurs mais le législateur anglais ne souhaite en aucun cas accélérer la mort, même si elle est inévitable, et ne légifère donc pas sur cette pratique.

De plus, le législateur a rejeté trois projets de loi qui auraient permis un pas vers la légalisation de la mort assistée. Ces projets de loi sont intervenus notamment après l’affaire Tony Nicklinson. En 2008, Tony Nicklinson a subi un accident vasculaire cérébral qui l’a laissé paralysé et muet. Il vivait un cauchemar et souhaitait mettre fin à sa vie. Cependant, il ne pouvait pas le faire sans aide. Il a donc demandé en 2012 à la Supreme Court de l’autoriser à mettre fin à sa vie avec l’aide d’un médecin ainsi que de reconnaître l’incompatibilité de cette loi avec ses droits fondamentaux. Suite au rejet de ses demandes, Tony Nicklinson a refusé de s’alimenter et est décédé peu après. Si l’un des projets de loi évoqués ci-dessus avait été adopté, des personnes dans la même situation que M. Nicklinson aurait pu bénéficier d’une assistance dans la mort. En 2012, une ancienne députée du Parlement écossais a présenté un projet intitulé «the Assisted Suicide (Scotland) Bill (2013)». S’il avait été adopté, ce projet aurait permis à une personne atteinte d’une maladie en phase terminale de mettre fin à ses jours grâce à un médicament prescrit par le médecin. Le projet a été rejeté dès la première étape du débat. Deux autres projets de loi similaires ont été examinés et rejetés en 2014 et 2015.

En France, comme en Angleterre, les lois ont été fortement influencées par différentes affaires très médiatisées. Cependant, les législateurs anglais et français refusent toujours de légaliser l’euthanasie et le suicide assisté. Ils justifient notamment leur refus en arguant que les soins palliatifs et la mort assistée poursuivent des objectifs différents: les premiers ont pour but de soulager la douleur du patient tandis que la seconde vise à provoquer le décès du malade en fin de vie.

Photo by the National Cancer Institute on Unsplash

Les arguments des législateurs anglais et français pour justifier leur refus de légaliser la mort assistée

Les arguments du législateur anglais sont similaires à ceux du législateur français et sont repris dans les différents débats parlementaires lorsqu’un nouveau projet de loi tendant à la légalisation de la mort assistée est en discussion. Il existe trois arguments principaux pour appuyer le refus de la légalisation de cette pratique. Les législateurs font d’abord valoir un manque de clarté problématique pour les personnes qui seraient concernées par la mort assistée (1). Ils estiment ensuite qu’il faudrait réformer la prise en charge du patient en fin de vie plutôt que de légaliser la mort (2). Enfin, est mis en avant l’argument selon lequel le choix du patient sur sa fin de vie comprend également la possibilité de changer d’avis, ce que l’acte irréversible qu’est la mort ne permet pas (3).

1. Un manque de clarté des propositions de loi dangereux pour les patients en fin de vie

Les législateurs français et anglais ont avancé que les propositions de loi étaient trop vagues. Par exemple, la proposition de loi de 2012 présentée en Ecosse ne possédait pas de définition permettant de différencier l’euthanasie du suicide assisté. Les projets de loi étaient alors inadéquats pour le patient qui souhaite prendre contrôle de la fin de sa vie. En effet, le malade en fin de vie souhaitant mourir par sa main (suicide assisté) mais qui décède par une le fait d’un médecin (euthanasie), ne prend pas contrôle de sa fin de vie comme il le souhaiterait.

De plus, ce manque de clarté aurait pesé sur le corps médical qui se serait chargé de cette mort assistée incertaine. En effet, il est nécessaire que le médecin soit soumis à des règles très clairement établies, lesquelles garantiraient le consentement du patient de recourir à la mort assistée, et permettraient au médecin de ne pas être jugé pour un acte qu’il pensait être autorisé. Enfin, le manque de clarté des projets de loi aurait également eu des répercussions pour les juges et avocats qui auraient eu de nombreuses difficultés pour apprécier si une affaire concernant la mort assistée pouvait être jugée criminellement. Considérées comme étant trop peu précises par les législateurs anglais et français, ces derniers ont préféré ne pas adopter ces propositions.

2. Une meilleure prise en charge de la fin de vie du patient

Un autre argument avancé par les législateurs français et anglais est qu’il est nécessaire non pas de légaliser la mort assistée, mais de placer les malades en fin de vie dans une meilleure situation.

Pour eux, il s’agit de réformer la prise en charge du patient en fin de vie et d’alléger du mieux possible sa souffrance sans toutefois avoir recours à la mort. En effet, selon les législateurs, avec une fin de vie sans douleur et un meilleur accompagnement du malade dans son décès, la légalisation de la mort assistée deviendrait superflue.

Les législateurs français et anglais, dissuadés par le caractère irréversible de la mort, tentent alors de mettre en avant l’alternative d’une fin de vie préférable plutôt que la légalisation d’une mort plus douce. 

3. «La liberté, c’est de changer d’avis»

Un des arguments essentiels en faveur de la légalisation de l’euthanasie est que le patient devrait pouvoir choisir et prendre le contrôle de sa fin de vie. Mais, la liberté de choisir comprend aussi la liberté de changer d’avis ; l’acte irréversible qu’est la mort assistée serait donc inadaptée pour les patients en fin de vie. Selon cette approche, le patient qui recherche la mort ne voudrait en fait qu’abréger ses souffrances et aux portes de la mort. De plus, les législateurs considèrent que parfois la mort est souhaitée par le patient non pas pour mettre fin à ses douleurs mais pour éviter de devenir un « fardeau » pour sa famille. Ainsi, les législateurs sont formels :  à cause du caractère irréversible et définitif de la mort assistée, cette dernière ne peut être légalisée sans porter atteinte à la liberté des patients de choisir et de changer d’avis.

Pour conclure, les législations françaises et anglaises ont évolué afin de garantir aux patients une fin de vie plus sereine. Grâce à la volonté d’éviter l’acharnement thérapeutique ou la possibilité de la sédation profonde et continue, les souffrances sont soulagées. Cependant, les législateurs restent fermes dans leur refus de légaliser l’assistance dans la mort. Pourtant, la société évolue et souhaite de plus en plus la légalisation de la mort assistée, comme en témoignent les propositions en ce sens de plusieurs candidats lors des dernières élections présidentielles en France et les nombreux sondages [2]. C’est pourquoi, en complément de ce premier article, un second projet, une interview, se concentrera sur les arguments en faveur de l’euthanasie.

[1] C (Adult: Refusal of Medical Treatment), Re [1994] 1 WLR 290 (Fam).

[2] Selon l’IFOP, Le regard des Français sur la fin de vie, avril 2021, 93% des Français souhaitaient la légalisation de l’euthanasie pour les personnes souffrant de maladies insupportables et incurables. En Angleterre, Populus (maintenant appelé Yonder), Dignity in Dying Poll, 2019 a établi que 84% supporte la légalisation de la mort assistée chez les malades en fin de vie.

ESRC New Investigator Grant Award For ‘Mediation of Medical Treatment Disputes: A Therapeutic Justice Model’

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Dr. Jaime Lindsey, Senior Lecturer in Law at the University of Essex, has recently been awarded the prestigious ESRC New Investigator grant for her research project ‘Mediation of Medical Treatment Disputes: A Therapeutic Justice Model’. She has been awarded £299,791 over 30 months to use socio-legal methods to research the use of mediation in medical treatment disputes.

The core aim of the project is to understand whether and, if so, the extent to which, mediation can and should be viewed as a form of Therapeutic Justice in medical treatment disputes. The research will adopt a mixed-methods approach including observations of medical treatment mediations, interviews with mediation participants and a questionnaire.

Mediation, which is a form of alternative dispute resolution, is generally more informal and flexible than court proceedings, but often takes place alongside or in parallel with court cases. ‘Medical treatment disputes’ in this context means disagreements that arise between patients, health professionals, family members and others regarding the provision of health and care to the patient herself.

Usually the patient will be an adult with impaired mental capacity or a child below the age of 16, such that they are legally incapable of making their own decision about medical treatment, hence the involvement of healthcare professionals, family members and the courts. The disputes most commonly arise between family members of the patient and healthcare professionals, but in some cases may involve the patient herself.

The research will consider whether there are any therapeutic, or healing, benefits of using non-court based methods of resolution, such as mediation, to resolve disputes that arise from healthcare contexts, as well as considering the ways in which mediation could become more therapeutic as an intervention. For example, through improved communication between parties, improved voice or participation in the process of dispute resolution and speed of resolution.

This project builds on existing research on mediation and Therapeutic Justice to consider mediation’s value in often challenging healthcare environments, while also considering that mediation comes with a number of risks which may make it is less than ideally therapeutic. For example, mediation can reflect or reinforce existing power imbalances between parties, it can limit the participation of the subject of proceedings and it may be seen as a cost-saving, rather than therapeutic, exercise.

As the use of mediation has not yet been tested through empirical research in the medical treatment disputes context, nor has a model of Therapeutic Justice been developed or applied to this field, this project seeks to test those claims empirically through qualitative analysis of mediation in medical treatment disputes.

This research will commence in April 2022, with a launch event later that year, followed by dissemination of the research findings in the later years of the project. If you would like further information about the project or to be kept updated regarding the findings then please get in touch with the PI, Dr. Jaime Lindsey, at this email address: j.t.lindsey@essex.ac.uk

Capabilities, Capacity and Consent: Sexual Intimacy in the Court of Protection

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Dr. Jaime Lindsey, Lecturer in Law at the University of Essex has a new article published in the Journal of Law and Society. The article is entitled ‘Capabilities, capacity, and consent: sexual intimacy in the Court of Protection’ and is co-authored with Professor Rosie Harding of the Birmingham Law School.

The article uses original data from research at the Court of Protection to explore capacity to consent to sex in practice. It argues that the approach under the Mental Capacity Act 2005 fails to place appropriate focus on consent as central to understanding sexual capacity.

The capabilities approach to justice is then used to demonstrate the limitations of the existing legal approach to capacity to consent to sex, and to argue that the protective focus of the legal test would be better centred on the social risks resulting from non‐consensual sex and exploitation.

Finally, the article argues that, rather than focusing on a medicalized approach to understanding sexual intimacy, an analysis based on capabilities theory provides conceptual tools to support arguments for additional resources to help disabled people to realize their rights to sexual intimacy.

The article is published Open Access and is available here.

Protecting Vulnerable Adults from Abuse: New Publication

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Dr. Jaime Lindsey, Lecturer in Law, University of Essex

Dr. Jaime Lindsey recently published an article in Child and Family Law Quarterly (Volume 32, Issue 2, pp. 157-176), titled ‘Protecting vulnerable adults from abuse: under-protection and over-protection in adult safeguarding and mental capacity law’.

The article concerns the intersection between adult safeguarding and mental capacity law; an area which raises a number of difficult issues for lawyers, policy makers and health and social care professionals when thinking about the extent to which the civil law ought to be used to respond to abuse of adults with impaired mental capacity.

The article draws on original empirical data to show that adults vulnerable to abuse are left under-protected in some cases and over-protected in others. In particular, it argues that the Mental Capacity Act 2005 has become a tool for protecting vulnerable adults from abuse. Moreover, this is done in ways that restrict and control the vulnerable victim, rather than targeting the perpetrator.

Learning from developments in the domestic abuse sphere, including the Domestic Abuse Bill currently going through Parliament, Dr. Lindsey argues that safeguarding adults law should instead focus on perpetrators of abuse by developing a Safeguarding Adults Protection Order (SAPO), instead of resorting to mental capacity law in these challenging cases.

The article is available on LexisLibrary and a copy can be requested via the University’s Research Repository here.

Supporting a Fair Approach to COVID Triage

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A limited supply of life-saving medical equipment in the NHS is raising important questions about how frontline clinicians prioritise coronavirus patients for use of scarce resources and Essex rights experts are providing critical support to help avoid discrimination.

A team of researchers linked to the Essex Autonomy and Ethics of Powerlessness projects have provided a vital overview of existing guidelines around the world, subjecting them to a bioethical and human rights analysis. Their work aims to help NHS ethics committees formulate fair policy and triage procedures for coping with the extraordinary pressures of the pandemic.

Published this week, their report addresses the limitation of the well-known triage principle of maximising the number of lives saved on the basis of a clinical assessment of prognosis.

In order to help clinicians potentially faced with the agonising choice of whose lives should be saved, the team have explored how guidelines address issues such as whether an age limit should be set in order to triage patients or whether randomisation is a fair approach. “Our aim has been to provide a survey of existing research and guidance in a form useful to policymakers who are struggling to formulate just and evidence-based principles of triage during the COVID-19 pandemic,” explained Professor Sabine Michalowski, from the School of Law, who is leading the project.

Because there are no easy answers or uncontroversial approaches to many of the pressing issues arising in triage, it is crucial to have clear criteria in place on which decisions are based, as well as procedures that will be followed as part of the decision-making process.

Professor Michalowski explained that human rights must not be forgotten in developing responses to the medical and economic crises.

It is important for policymakers to be aware that, although there may not be one ‘right answer’ to the question about triage management, there are clearly some ‘wrong answers’ and it’s important to design and apply criteria with acute awareness of the importance of avoiding discrimination, based on age or disability for example.

Described by one frontline professional as “extremely useful as an incredibly clear synthesis of the literature and issues”, the report will also form the basis for a lecture on the ethics of triage by Professor Wayne Martin of the School of Philosophy and Art History.

This post first appeared on the website of the University of Essex and is reproduced here with permission and thanks.