Mental Capacity and Future Disabled “Voice”: Initial Thoughts on Disability and Advance Decisions to Refuse Treatment

Background: Disability and Medical Intervention

When I was thirteen, a doctor wanted to break my jaw.

I have multiple skeletal abnormalities due to gene deletions and mutations, as a result of which, I’ve had a long history of interactions with healthcare professionals. The encounter with the orthodontic surgeon was one such interaction.  He proposed surgery for what would have been largely cosmetic reasons, and we decided against it. I compare this encounter with what happened when I first visited my hand specialist. I was 15, and had just been diagnosed with a specific deformity affecting my forearms and wrists. After telling me about the condition, the specialist explained that as I had stopped growing, there was no appropriate treatment, He went on suggest that there had been a number of surgical treatments attempted for this extremely rare condition, that the reason for so many varied attempts was that surgeons were keen to “make their name” by devising complex surgical interventions, but that none had a strong likelihood of a positive outcome, and many had made patients’ symptoms worse. He also told me that surgical intervention was more common in the U.S. than in the U.K. – because the system of medical insurance made surgeons keener to pursue interventions that could be funded by insurance companies.

I am not concerned here with the “truth” or otherwise of these issues. I am using these experiences to set out the context that forms my experiences as a disabled person, concerning medical treatment. Encounters such as this mean I grew up with the impression that doctors were likely to propose aggressive surgical treatments, not on the basis of what might provide the best outcome for me, but on the basis of what they “could do”, or of what may be in it for them, and their career. I certainly was not encouraged to believe that I could rely on a doctor to have my “best interests” at heart, or to consider the impact of my conditions and related treatments on my life outside of their consulting room. This, along with humiliating examinations, and rooms crammed full of curious medical students, made me feel like a series of “problems” to be “fixed”.

I know I am not the only disabled person to have such formative experiences. I know that many of us have stories to tell of such oppressions at the hands of healthcare professionals. I also feel strongly that such oppressive encounters are not unique to medical environments, but rather they reproduce and echo the ways in which disabled people are viewed and treated in, and by, society more widely. Such clinically-situated oppressions manifest themselves in two ways:

  • Coercion into unwanted or unnecessary treatment, with the aim of enabling people to conform to normative expectations of cognitive, emotional, or physical presentation.
  • The withholding of treatments, based on assumptions or judgments about the “worth” of a disabled person’s life. This may include placing DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) orders on disabled people, without discussion or consent, as a result of views about the person’s “quality of life”.

My own experiences, and the culture within which I exist as a disabled person, are some of the reasons why I am passionate about autonomy and self-determination, particularly regarding interactions with healthcare professionals, and with medical systems and structures. There are lots of ways of tackling social injustices around healthcare, but it seems a good strategy to begin with the tools we already have. One such category of tools comprises the rights enshrined in existing legislation. So, for this reason, part of my PhD research (which focuses on issues around the Mental Capacity Act 2005, and its impact on the “voice” of disabled people), is concerned with Advance Decisions to Refuse Treatment (ADRT). In this blog, I am setting out my emerging thoughts about the concept of ADRT, and what it may offer for disabled people – particularly in conjunction with another existing legislative instrument: the United Nations Convention on the Rights of Persons with Disabilities (the UNCRPD).

Adults with Capacity and Treatment Refusal

As an adult with the mental capacity to make decisions about medical treatment (according to the framework set out in the Mental Capacity Act 2005), I don’t need to worry overly much about the possibility of being subjected to medical interventions to which I have not consented. The right to self-determination and autonomy for “competent” adults, with regard to the refusal of medical treatment has been enshrined in English case law – for example, in Re T (Adult: Refusal of Treatment) [1993] Family Law 93, as Lord Donaldson MR stated, in analysing the tension between the rights of the individual (to self-determination – the right to live her life as she wishes), and of the society in which the individual lives (in upholding the principle of the sanctity of life), “in the ultimate, the right of the individual is paramount” (at p.113). Concerns about the conflation of the “competence” of an individual to make a decision with her reasoning for that decision (as suggested in Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 – see Stauch, 2002) have, at least as a matter of legal theory, been addressed by the MCA 2005 – in particular s.3 MCA 2005, that sets out the “process” criteria by which capacity is assessed, in conjunction with the overarching principles of the Act, stating that capacity is to be presumed (s.1(2) MCA 2005), and that an objectively “unwise” decision is not grounds for an inference of lack of capacity (s.1(4) MCA 2005).

In reality, life as a disabled person is often more complex than this. During the interviews I have carried out so far with disabled people about their views on advance decision-making, participants have told me a great deal about such complexities – people feeling compelled to accept “talking therapy” in order to maintain access to medications they believe benefits them, people who worry about losing the cooperation of doctors they rely on for medical evidence that impacts their education, employment, or access to social welfare, people who feel pressure from family members, and others close to them, who view their refusal of treatment as “giving up” or as “not trying hard enough”. So, there is obviously a lot at stake for disabled people in refusing treatments, even when our mental capacity to make such decisions is not contested. But what about if we lose this capacity? What about people in my situation – who, as a result of our experiences, fear the loss of control, and the surrendering of this control to healthcare professionals who have so far failed to earn the right to such profound, fundamental trust? Well, ahead of such a loss of capacity, a loss of control, we have an option enshrined in law – we have the right to make an Advance Decision to Refuse Treatment (ADRT)

Advance Decisions: What are they?

Advance Decisions to Refuse Treatment (ADRT) have historically been known as “Living Wills”, and, prior to their enshrining in statute in the Mental Capacity Act 2005 (the MCA 2005), they existed in Common Law. The current ADRT legal framework is set out in ss.24-26 MCA 2005, which state the following:

  • S.24 MCA 2005 (General Provisions): A capacitous person may make an ADRT after reaching the age of 18, to ensure that if in future in given circumstances, a medical treatment is proposed for them, and they lack the capacity to consent to such treatment, the treatment should not be carried out. This decision may subsequently be withdrawn while the person retains capacity, and such withdrawal need not be in writing.
  • S.25 MCA 2005 (Validity and Applicability): The ADRT will not be valid if a) it has subsequently been withdrawn; b) the person who made it has subsequently granted a Lasting Power of Attorney, giving someone the power to give or refuse consent for the treatment to which the ADRT relates; or, c) the person has done anything else “clearly inconsistent with the advance decision remaining his fixed decision”. The ADRT will not be applicable if a) the treatment proposed is not that specified in the ADRT; b) any circumstances specified in the ADRT are absent; or, c) there are reasonable grounds to believe that circumstances exist that the person did not anticipate at the time, and which would have affected the decision if they had anticipated them. There are further requirements of an ADRT relating to life-sustaining treatment – in order to be applicable, such a decision must be accompanied by a statement to the effect that it is to apply even in circumstances where the person’s life is at risk. Further, the decision must be made in writing, and it must be signed and witnessed.
  • S.26 MCA 2006 (Effects of an ADRT): If a person has made an ADRT that is valid and applicable, a) a person does not incur liability for carrying out or continuing treatment unless, at the time, s/he is satisfied that an ADRT exists and is valid and applicable; and, b) a person does not incur liability for the consequences of withholding or withdrawing a treatment from a person, if, at the time, they believe an ADRT exists that is valid and applicable.

This means that, in theory at least, I have the legal right to make provisions that ensure I don’t need to live in fear of being subjected to treatments in circumstances where I lack the capacity to give or withhold consent. I don’t need to worry about doctors wanting to “make their name” with my body, or to make money through treatments that are unlikely to make me better, and that might make my prognosis worse. Such fears don’t need to dominate my life. There is lots of discussion about the metaphysical dilemmas surrounding the concept of ADRT, as a mechanism for “present me” making decisions for “future me” – and whether I would be the “same person” in future, if I lost capacity (see, for example: Dworkin, 1993; Dresser, 2018). But for me, the scenarios I’ve set out here illustrate a key contemporaneous value of the concept of ADRT for me, as a disabled person – in that they give “present me” rights to live, at least in theory, free from fears about what might happen in my future.

Theory and Practice

There is a lot in the analysis I have presented here that applies “in theory” – with rights set out in the “black letter of the law”. However, as in most areas of the law, the situation in practice is considerably less clear. Despite the possibility for ADRT to confer legal rights that are likely to be especially beneficial to disabled people, there are also several complexities to address:

  • How do disabled people approach the concept of refusing treatment within a social and cultural context that controls the giving and withholding of medical treatment based on a set of values that views us as “lesser” than abled people – that makes judgments about our worth, and our “quality of life” based on ableist assumptions and expectations? (This is the focus of the “legal consciousness” study that forms one of the chapters of my PhD).
  • How do the rights of disabled people to exercise their legal capacity to refuse future treatment exist alongside those of abled people? Particularly, given the existence of a wide range of conceptual and practical problems impacting the population as a whole; with regard to access, uptake, and implementation of ADRTs, what are the best ways to approach these issues for disabled people? To what extent is it appropriate to argue for better access to ADRT for the general population, while ensuring that disabled access forms part of this overall agenda? And what “special” protections and affordances might be offered by tools and strategies that relate specifically to disabled people, and the culture of oppression that affects us uniquely (such as the relevant provisions of the United Nations Convention on the Rights of Persons with Disabilities)? This forms the basis of a separate but related doctrinal analysis on which I’m currently working.

It would be great to hear of any thoughts people might have on these themes. In particular, I am keen to hear from disabled people about our experiences of refusing medical treatment (including those relating to mental ill-health), and of attempting to make ADRTs, or supporting others to do so.

You can contact me via the contact page on this website, via Twitter (@loomesgill), or by email (lwgl@leeds.ac.uk)

If you would like to find out more about Advance Decisions to Refuse Treatment, check out compassionindying.org.uk – or to access a template to plan your own ADRT, visit mydecisions.org.uk.

“Reasonable Adjustments” for #AutisticsInAcademia: The Community Speaks…

I made a request on Twitter for people working or studying in academia to share what adjustments or accommodations work to make things better for them. As usual, #AutisticsInAcademia came through, and made some great suggestions. I’ve compiled them into a list below.

You can find the original thread (including some wider discussion of relevant issues) here: https://twitter.com/LoomesGill/status/1147086537210904576

You can follow me on Twitter @Loomesgill

And you can keep in touch with autistic people working/studying in academia internationally via the hashtag: #AutisticsInAcademia

Here are the things that #AutisticsInAcademia have found useful:

  • Having someone outside of the institution to provide advice and support.
  • Attending meetings and events via video-conferencing.
  • Clear expectations.
  • Captions for video/audio.
  • Option to work from home.
  • Following things up in writing, as verbal instructions/discussions can be forgotten.
  • Using (noise-cancelling) headphones in open-plan or shared offices.
  • Working part-time.
  • Using lamps instead of strip-lights.
  • Having a designated desk, rather than hot-desking.
  • Context and detail when people ask questions.
  • Having unspoken/unwritten rules written down.
  • Flexible working.
  • Having a mentor.
  • Mental health support.
  • Access to quiet space.
  • Autism training for colleagues.
  • Prior notice, and support during changes.
  • Warning about any noisy/crowded events on campus.
  • Accessible parking.
  • Support with admin and form-filling.
  • Recording meetings and classes.
  • Completing work orally, rather than in writing.
  • Access to a note-taker.
  • Access to pdf documents to read with screen-reader.

Do you have any further suggestions? Or any comments about being #AutisticsInAcademia? Feel free to respond in the Comments Section. I’ll update this article periodically to expand our discussion.

Book Review: Sword, H. (2017) “Air & Light & Time & Space: How Successful Academics Write” Cambridge, Mass. Harvard University Press

I adore writing … mostly.

I find my “voice” through writing, in a way that’s beautiful, delicious, self-expression … except when it isn’t.

When it’s “right”, it’s pure exhilaration, it’s something approaching orgasmic – erotic, as when “work becomes a conscious decision – a longed-for bed which I enter gratefully, and from which I rise up empowered (Lorde, 1978). It’s pure artistry which I, as a person for whom speech, though mostly achievable, comes with the neurological energy demands of an almost-though-not-quite-fluent second language, value hugely.

When it’s not “right”, however – when my thoughts desert me, when the mists descend and I can’t see the words for the trees, or, more usually, when I feel so pulled in multiple other directions across the expansive terrain of my life that I lack the ability – or, the “air and light and time and space” to immerse myself in the poetry of ideas, and the music of words, it’s torturous, unfulfilling, unforgiving.

And I’d love to be able to increase the “right” – to make it more trainable, more controllable, more malleable – less “wild stallion”, more … not “dressage” exactly, but perhaps the powerful, enthusiastic, harnessed energy of riding across country – reaching your destination, but also enjoying the ride.

The trouble is that I’ve never been good at being “taught” to write. It’s just been something that I “do”, and every time anyone has attempted to teach me, or I’ve searched books for ideas on “how to” train this aspect of me, the end has been hot, angry frustration as I attempt to (or feel pressured into) twisting my reluctant, stubborn brain into the mental gymnastics required for me to think, and work, like someone else.

There is one exception to this that I remember clearly – one of my junior school teachers used to set a weekly writing exercise, whereby he gave out a topic or title on the Monday of each week, and on the Friday morning we had to write a piece based on the topic. This was just delightful – a chance to indulge in playing with words, and making music using the melodies I acquired through voracious reading, and a chance to excel at a personal passion. It was also purely generative, as the odd suggestion over the shoulder led to an improved lexical choice, or a grammatical or syntactical improvement – clearer communication and sharper expression of my ideas. However, with this exception, all other experiences of education on writing have resulted in nothing but frustration, angst, brutality, and a host of murdered darlings.

I had reached the conclusion that my approach to writing is too idiosyncratic, – more (uncontrollable, or at least, uncontrolled) magic than craft – and too sporadic and reliant upon the capricious will of my own mind to be susceptible to aid and structured improvement.

Then recently, I discovered this book.

Helen Sword has produced exactly the guide to academic writing that I needed. And she has done this by not really providing a “guide” at all – but rather an empirical study of the writing habits of academics across disciplines, and around the world.

Taking its title from the poem by Charles Bukowski, the book speaks to the image of a suffering-yet-productive artist, as a model relating to academics, and asserts that there is no point in waiting for a perfect space in which to create – as creativity will emerge in the most trying of physical, personal, and social circumstances (not sure quite what Virginia Woolf would make to this? But then, who’s afraid of Virginia Woolf?).

The central thesis of the book is the development of a “BASE” model, which Sword uses to articulate the tools necessary to build your own personal, virtual “House of Writing”. BASE encompasses the following 4 areas of focus:

B – Behavioural Habits

A – Artisanal Habits

S – Social Habits

E – Emotional Habits

These are explored in their own chapters, by reference to a considerable empirical study on which the book is based (see what I did there?) The empirical work is outlined in detail in the introductory chapter (itself a beautiful meta-model of how to write about methods in a way that is accurate, clear, and engaging). Sword explains how she undertook two forms of data collection, with a view to demonstrating the contrasts between two different, clearly demarcated categories of academic writer – (1) “Exemplary academic writers” chosen by Sword, and interviewed in-depth, and on-the-record, and (2) “Lesser-known academics from underrepresented cultural, ethnic, and gender minorities who have survived, and even thrived, in academe” who had signed up for, and attended Sword’s writing workshops, and were asked to complete an anonymous questionnaire (n = 1223: faculty members, PhD students, postdoctoral researchers, and independent scholars).

Sword explains that she had assumed she’d be able to make authoritative claims based on her data, about the writing habits of successful writers, and how these compared and contrasted with those of less confident writers, who identified themselves as in need of support (and therefore signed up for a writing workshop); as well as being able to draw conclusions about the different writing practices of, for e.g. different genders, different geographical/cultural demographics, different academic disciplines. She quickly found, however, that rather than identifying such patterns in the writing practices of her respondents, she was “struck by the richness of their difference”, in a way that is highlighted acutely in this account:

“The futility of such scholarly typecasting struck me with particular force on the day I interviewed two colleagues who work in the same discipline and had recently been awarded the same prestigious research prize by the professional society to which the both belonged…they matched each other as closely as any other two academics in my interview cohort. Yet their personal affects and attitudes towards writing could hardly be more different. One was self-confident, the other self-effacing; one was earnest, the other ironic; one clearly loved to write but spoke mostly about the agonies of writing, while the other clearly struggled to write but spoke mostly about its pleasures.” (Sword, 2017: 3)

Rather than shoehorn her data into an awkward “how-to” of academic writing practices. Sword therefore presents a wide-ranging discussion on the numerous, often resourceful, sometimes dispirited and stodgy treacle-wading ways in which academics at all levels, in all areas of academe negotiate and engage with the affordances and contingencies of writing within (and often in spite of) academic and personal lives.

I found this book a joy to read. It was so heartening to feel that I wasn’t alone – and that it isn’t only other PhD students, but writers of all levels of experience, at all stages in their careers, who experience many of the same highs and lows that I do, and who deal with their own successes and adversities in a huge range of ways. It was fabulous to have it affirmed that there is not necessarily a black/white, right/wrong dichotomy in writing practice, but rather that writing, as a craft, is best undertaken in whatever seem to be the best ways that suit the circumstances in which the writer finds herself.

At times, I found myself encountering a familiar sensation that some of my own (dis)abilities, and encounters of adversity and oppression (particularly as an autistic, disabled writer) were missing from the accounts in this book: an omission that was particularly noticeable, given the focus built into the book’s methodological approach, on the experiences of writers from other minority groups.  This was disappointing in terms of Sword’s (self-identified) aims of representation of diversity, but it didn’t necessarily impede my engagement with, and enjoyment of the book, because I also got a huge amount from the areas and experiences that were covered. I feel that this is simply an argument for more, pluralistic, discussion of the craft of academic writing – discussion that is rooted in, that takes as its starting point, and that engages analytically with, empirical accounts of practice. Writing is so often portrayed as a mysterious, secretive, veiled practice – or as a “talent” that you either have, or you don’t. This book really lifts the lid on this practice. It won’t provide you with a “House of Writing”, but it will begin to provide you with the tools to find the “air and light and time and space” with which to build your own.

I would recommend this book to anyone who, like me, finds their “voice” through (academic) writing.