In 2017 the UN Human Rights Council published the “Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”. The secretariat prefaces the report by observing the Rapporteur’s call “for a shift in the paradigm, based on the recurrence of human rights violations in mental health settings, all too often affecting persons with intellectual, cognitive and psychosocial disabilities” (p.1).
The report goes on to say that “Informed consent is a core element of the right to health, both as a freedom and an integral safeguard to its enjoyment” (p.14). The right to consent to treatment includes the right to refuse treatment but “the proliferation of paternalistic mental health legislation and lack of alternatives has made medical coercion commonplace” (p.14). Justifications for using coercion based on risk and dangerousness and medical necessity are subjective and “exclusive to psychiatrists, who work in systems that lack the clinical tools to try non-coercive options” (p.14).
The report continues:
“Coercion in psychiatry perpetuates power imbalances in care relationships, causes mistrust, exacerbates stigma and discrimination and has made many turn away, fearful of seeking help within mainstream mental health services. Considering that the right to health is now understood within the framework of the Convention on the Rights of Persons with Disabilities [CRPD], immediate action is required to radically reduce medical coercion and facilitate the move towards an end to all forced psychiatric treatment and confinement. In that connection, States must not permit substitute decision-makers to provide consent on behalf of persons with disabilities on decisions that concern their physical or mental integrity; instead, support should be provided at all times for them to make decisions, including in emergency and crisis situations.” (p.15)
The report acknowledges the radical nature of these proposals and the concerns of stakeholders including medical practitioners and proceeds nonetheless to invite States to move towards an “absolute ban on all forms of non-consensual measures … Instead of using legal or ethical arguments to justify the status quo, concerted efforts are needed to abandon it. Failure to take immediate measures towards such a change is no longer acceptable” (p.15)
The implications of this report have been seized upon by service user and survivor groups (see for example Point 7 of the Executive Summary of the Kindred Minds BME Manifesto at https://www.nsun.org.uk/news/bme-mental-health-service-users-launch-manifesto) but mental health services are not perhaps falling over themselves in their haste to catch up.
The reference to ‘psychosocial disabilities’ includes the contested diagnostic fields of ‘personality disorder’ and ‘eating disorder’ and my business in this blog is with the latter category. For more than fifteen years now I have been working as a psychotherapist on an inpatient ‘adult eating disorders’ unit and for the last seven or so of these years I’ve been leading the psychological therapies team there.
The ‘symptom’ being treated is starvation and the treatment being enforced is refeeding. Psychological therapies are understood to play a central role in supporting this process and/or in supporting the sufferer to undergo the intervention. In my role I am therefore unambiguously party to and implicated in this enforced treatment. This treatment is possibly often life-saving and life-restoring and yet is experienced as a terrifying intrusion, one to be resisted at times by any means possible, by many of the individuals who receive it – and now it has been proclaimed to be part of a widespread and endemic abuse of the human rights of those same individuals.
When I first arrived on that ward, more than fifteen years ago, coercive treatments under the Mental Health Act were very rare (I emphasise here that it is adults I am thinking of and the particular dynamics of adolescent units, although of course also covered by the Rapporteur’s findings, are outside my authority to comment upon). Adult patients in those days were on some psychological level ‘volunteering’ to undergo the intervention, in the hope of making a full medical recovery from malnutrition and from the distress that drove the troubled or troublesome food practices to begin with.
Nowadays 30-60% of patients at any one time are detained under MHA s.3 for compulsory treatment for their ‘disorder’ (specifically, anorexia nervosa, for other manifestations of eating distress are very rarely funded for this kind of unit). Coercion is therefore more explicitly medico-legal than it used to be, even though refeeding was always carried out across a power differential. And according to the Special Rapporteur, the coercive aspect of ‘eating disorder’ treatment is therefore more explicitly in contravention of international law.
In this blog I do not propose to argue for or against the findings and recommendations of the Special Rapporteur. I propose to treat them as a given and to look at the treatments I have been party to and the ethical issues they have always raised in this particular new light. Historic moments like the publication of the report to the Human Rights Council do and must give pause for thought and one question in particular has been niggling away at the back of my mind:
What can the fourth season of Star Trek: Voyager teach us about the ethical limits and excesses and the psychosocial dynamics of coercive treatment for ‘eating disorders’ on inpatient units?
Well, I know you’ve been asking this very same question … and I don’t mean at all to be flippant about so deadly and deathly serious a subject. But sometimes material from literature and popular culture may serve as useful analogy or parable and I don’t want to blog about a ‘real life’ case study – for reasons I hope are self-evident.
So I hope you’ll bear with me, Trekkies and non-Trekkies alike, while we journey into the 24th century and the Delta Quadrant, 70,000 light years away from Earth, where we find the crew of the starship Voyager, under the command of the intrepid Captain Janeway, stranded far from home, making their way through unknown swathes of space and hostile predators, of whom the most significant for our purposes is The Borg, a hive of drone organisms who anthropophagically assimilate the technologies of alien species via enforced assimilation, turning enslaved individuals into cybernetically and surgically transformed fellow-drones within the Collective in pursuit of an idealised technological and socio-political perfection.
Now when I describe them thus, they don’t sound like a very sympathetic bunch, but you have to remember that the Borg drones have been subjected to coerced medical procedures in order to become Borg. They are already traumatised, colonised, subjected: made abject. They are victims-turned-predators, like a conscripted child army brainwashed into the massacre of alien villagers.
In their predatory and compassionless nature, they are very different indeed from the sufferers and survivors who pass through the door of the ward on which I work. But nonetheless I crave the reader’s indulgence not to be offended if I ask you (why? well, please bear with me a moment) to understand them not as the super-bad guys of the Star Trek mythology but as traumatised subjects with complex post-traumatic stress disorders; to imagine them as life forms with inalienable (although not conceptually individual) rights of their own – to see that they are fearfully perceived as ‘other’ in the sense of ‘belonging to an out-group’ – to see them as fiercely loyal to their sisterhood – in general to note that ‘their’ groupishness is different to ‘ours’ but that groupish they certainly are, chasing mirages of perfection together as one …
I ask you to allow, in short, for purposes of relating my parable, that this image might serve, in translation, as playful but respectful representation of the out-group in the Delta Quadrant of ‘severe and enduring’ eating distress …
As our story begins, a drone has become isolated from the Borg Hive and taken into inpatient treatment in the Voyager Sickbay. The drone’s appellation is ‘Seven of Nine’. In our story there are no junior psychiatrists – but there is an Emergency Medical Hologram (EMH) (a long story!) and he is presenting a tricky case to the Captain/Consultant Janeway …
EMH: I’m afraid we have a decision to make. A difficult one. Her human immune system has reasserted itself with a vengeance. … Her life is in danger. I have little recourse but to remove the Borg technology.
JANEWAY: Which is the last thing Seven of Nine would want.
EMH: Hence the difficult decision. If a patient told me not to treat them, even if the situation were life-threatening, I would be ethically obligated to honour that request.
JANEWAY: This is no ordinary patient. She may have been raised by Borg, raised to think like a Borg, but she’s with us now. And underneath all that technology she is a human being, whether she’s ready to accept that or not. And until she is ready, someone has to make the decisions for her. Proceed with the surgery.
Here then is the central ethical dilemma. Seven of Nine is being held to ‘lack capacity’. Janeway is acting paternalistically, on behalf of the Federation, in what she feels is a construction of Seven of Nine’s best interests – even though the Voyager MDT is clear that Seven of Nine would not want this. Her junior doctor evokes the CRPD – ‘we must respect the wishes of the patient’ – but Janeway feels she has to ‘hold the hope’ of a full recovery for her captive/patient. Seven of Nine cannot be allowed to remain (cybernetically) disordered – she is at risk of organ failure – a radical intervention is mandated, whether or not in compliance with Intergalactic Law … [I hope by now it’s clearer why I pleaded with the reader to bear with me]
In post-operative recovery, Janeway does a bedside visit …
JANEWAY: I’ve met Borg who were freed from the Collective. It wasn’t easy for them to accept their individuality, but in time they did. You’re no different. Granted, you were assimilated at a very young age, and your transition may be more difficult, but it will happen.
SEVEN: If it does happen, we will become fully human?
JANEWAY: Yes, I hope so.
SEVEN: We will be autonomous. Independent.
JANEWAY: That’s what individuality is all about.
SEVEN: If at that time we choose to return to the Collective, will you permit it?
JANEWAY: I don’t think you’ll want to do that.
SEVEN: You would deny us the choice as you deny us now. You have imprisoned us in the name of humanity, yet you will not grant us your most cherished human right. To choose our own fate. You are hypocritical, manipulative. We do not want to be what you are. Return us to the Collective!
JANEWAY: You lost the capacity to make a rational choice the moment you were assimilated. They took that from you, and until I’m convinced you’ve gotten it back, I’m making the choice for you. You’re staying here.
SEVEN: Then you are no different than the Borg.
Janeway here is channeling Creon in Sophocles’ tragedy, seeking to persuade Antigone that she would be making the pro-social choice in choosing life and conformity over autonomy in death (I write about this a lot in other places). She tries to soothe Seven of Nine with the wisdom of her experience – she has seen others recover. Seven of Nine, from this particular perspective, is a serious case – the disorder took her over at a very young age – but in time she will learn that it’s worth coming in from the cold on Federation terms, even though she doesn’t see it that way right now.
But Seven of Nine, still using ‘we’ in her Borg identification with the Hive, has a perceptive question: if you get me better, so that I am then able to exercise my free will, will you allow me to return to the disordered out-group? Janeway is boxed in by the logic of her own position: she upholds the full recovery model and reasserts Seven of Nine’s lack of capacity. No change to the care plan, sorry, it’s all in your best interests, says Janeway … and Seven of Nine sees it clearly in the moment: I recognise you – you are my abuser.
A little later on, it’s time for Seven of Nine to start therapy – her body is restored somewhat towards a standard of normal functioning – her sense of panic has subsided – she is more compliant, although still held in seclusion – she has entered cautiously into a relationship with her treating team …
SEVEN: … I cannot function this way. Alone.
JANEWAY: You’re not alone. I’m willing to help you.
SEVEN: If that’s true, you won’t do this to me. Take me back to my own kind.
JANEWAY: You are with your own kind. Humans.
SEVEN: I don’t remember being human. I don’t know what it is to be human.
(Janeway picks up a [tablet] and lowers the forcefield.)
SEVEN: What are you doing?
JANEWAY: I’m coming in.
SEVEN: I’ll kill you.
JANEWAY: I don’t think you will.
(Janeway enters the cell, staying out of arm’s reach. She shows Seven the picture from the Personnel File [of Seven of Nine as a human girl] on the [tablet].)
JANEWAY: Do you remember her? Her name was Annika Hansen … There’s still a lot we don’t know about her. Did she have any siblings? Who were her friends? Where did she go to school? What was her favourite colour?
(Seven looks at the picture for a while, then slaps it out of Janeway’s hand.)
SEVEN: Irrelevant! Take me back to the Borg.
JANEWAY: I can’t do that.
SEVEN: So quiet. One voice.
JANEWAY: One voice can be stronger than a thousand voices. Your mind is independent now, with its own unique identity.
SEVEN: You are forcing that identity upon me. It’s not mine.
JANEWAY: Oh yes, it is. I’m just giving you back what was stolen from you. The existence you were denied, the child who never had a chance. That life is yours to live now.
In a scene that seems to me to evoke forensic psychotherapy settings and seclusion facilities across many pathways, Janeway seeks, within a custodial frame, to engage Seven of Nine’s ambivalence and her repressed memories of her ‘pre-morbid’ condition before the trauma of assimilation by the Borg. Janeway is offering recovery but Seven of Nine not only can’t imagine what that might be like but is not at all sure there’s anything wrong with her that she needs to recover from. The emotional temperature goes up: Seven of Nine is aroused and agitated and distressed and confused but she can still clearly discern Janeway’s agenda, pressing upon her an identity that once was hers but with which she does not and cannot at present identify.
There’s lots more where this comes from, as Seven of Nine’s ‘recovery journey’ continues and Janeway and her crew gradually increase her privileges and reward her progress with initially fearful and reluctant but gradually more trusting processes and mechanisms of social inclusion. As time goes on, Seven of Nine’s expertise by lived experience will come in handy, when Voyager comes across the Borg again …
But for now, it’s time to leave them to their travels and to come back to the Special Rapporteur and his recommendations. Where does this report leave the coercive framework for inpatient eating disorders treatment? The Rapporteur acknowledges the intense ‘stakeholder’ anxieties stirred by the prospect of radical change. Where would these units be, after all, without their medico-legal technologies?
I have seen people in Seven of Nine’s situation (by allegory and analogy) who, like her, came to feel grateful that their lives were saved by coercive interventions. I have seen others whose lives were saved in the strict (and short term) sense of the word but blighted at the emotional and existential level by the horror of the treatment they received ‘in their best interests’.
Obviously, I have no authority to make an ethical ruling here. The Rapporteur says that “instead of using legal or ethical arguments to justify the status quo, concerted efforts are needed to abandon it”. His position appeals to me and scares me in equal measure. But the point of this blog reduces to one question that inches its way into consciousness, in various different guises:
What if Janeway had wrestled a little deeper with the question of Seven of Nine’s fear of losing everything in treatment? Janeway makes a case for the ‘special patient’ – she pursues a justification for the excess of forced treatment by saying that Seven of Nine is ‘no ordinary patient’. But what if there are never ‘special’ reasons for using force? This is the axiom that we are being required here to accept.
The Rapporteur says we “lack the clinical tools to try non-coercive options”. What if the increasing power and potency and even sophistication of our medico-legal technologies (the Mental Health Act; the Mental Capacity Act; Community Treatment Orders; naso-gastric feeding; PEG feeding; pharmaceuticals and so forth) has deskilled us in some simpler forms of intervention? Suppose our coercive muscles are so well developed, that our engagement skills have become rather flaccid and feeble with disuse?
Suppose we invested in developing those skills in what Judith Herman called ‘existential engagement’, instead of falling back in relief, behind our coercive medico-legal redoubts, away from the stresses and strains of open debate? Suppose as many or even more lives might have been saved in creative ways, as have been lost to mishap or suicide under more coercive regimes?
I don’t know; but I wonder …
Adlam, J. (2015) ‘Refusal and coercion in the treatment of severe Anorexia Nervosa: the Antigone paradigm’. Psychodynamic Practice, 21 (1), 19-35. https://www.researchgate.net/publication/265685587_Refusal_and_coercion_in_the_treatment_of_severe_Anorexia_Nervosa_The_Antigone_paradigm
Herman, J. (1997) Trauma and Recovery: The Aftermath of Violence – From Domestic Abuse to Political Terror. New York: Basic Books.
‘Star Trek: Voyager’ screenplays from http://www.chakoteya.net/Voyager/401.htm