Grief or Depression: the boundaries of illness?

Imagine experiencing some or all of the following:

• Depressed mood most of the day
• Diminished interest or pleasure in daily activities
• Insomnia or hypersomnia
• Lack of energy or fatigue
• Feelings of worthlessness or guilt
• Inability to concentrate
• Recurrent thoughts of death

Generic 'Grief or Depression?' photo

These are some of the criteria (along with further descriptors) for the current DSM-IV (the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders) definition of a major depressive episode. Few people experiencing these kinds of feelings, or witnessing others who do, would doubt that there may be something wrong, even if this is not construed in medical terms. But what if you had just suffered a bereavement, losing someone very close to you? Suddenly those feelings seem a whole lot more normal: a grief reaction, an understandable response to an exceptionally distressing life experience. In fact, it would be remarkable if, in the process of mourning, you did not experience at least some of those ‘symptoms’, and for quite a long period of time as you come to terms with your loss. So at what point (if any) does grief cross over into depression, a diagnosable mental illness that warrants treatment from the health services?

This question is at the crux of a big debate going on at the moment over proposals for the DSM-5 (the 5^th version of the Manual, due for publication in May 2013, amidst much controversy) that seek to change the way depression is defined. In its current version, there is an explicit “exclusion criterion” for grief. That is to say, if you have these symptoms in the context of suffering a bereavement, you’re not depressed, you’re grieving. It is only if these feelings (I am reluctant to call them symptoms) continue on for longer than 2 months that a diagnosis may be sought. Even that time frame seems short, but the proposals under consideration for the DSM-5 shorten the timeframe to 2 weeks.

Critics of this move, given voice in a recent editorial in The Lancet  contend that this shorter time period would inevitably create more patients, more people diagnosed with a mental illness when in fact they are experiencing a traumatic but perfectly normal and natural reaction to a difficult event. On these grounds, they argue, psychiatric treatment is a completely disproportionate response, and serves only to pathologise normal human experience. Proponents of the move counter that the mental health professions exist to alleviate suffering, and if someone is struggling to cope there is no harm in being able to identify and label their suffering with the intention of providing treatment that may help them cope and recover (here).

This debate raises two major questions of interest to the medical humanities. Firstly, what is a normal period of bereavement and at what stage might it transform into a mental health condition? Is it a matter of duration, severity of social and functional impairment, the inability to cope, suicidal ideation and ‘not wanting to carry on’? These are all important ethical and conceptual questions about the boundaries of normality and I doubt there are any clear cut answers.

Secondly, what is the role of psychiatry in society? Does it function to alleviate psychological pain and distress regardless of its cause, intensity or duration? Or should its treatments (whether pharmacological or psychotherapeutic) be used only for those suffering from ‘serious’, chronic and socially debilitating conditions? I realise as I write this that this partly depends on being able to answer the first question reliably and accurately, as there is no doubt that grief can be utterly debilitating, but yet normal.

There does seem to be a role in this debate for the medical humanities to pick apart the concepts of grief and depression, to try and better understand what, if anything, sets them apart, and how this could potentially be reflected in a diagnostic manual in a more sophisticated manner than simply pointing to duration of symptoms. Indeed, the most eloquent expression of the distinction I have come across is in the clinical psychologist Kay Redfield Jamison’s memoir of grief chronicling the loss of her husband to cancer:

The capacity to be consoled is a consequential distinction between grief and depression.
Nothing Was the Same, 2009 (reviewed here).

Worthwhile reading for the DSM-5 taskforce, perhaps?

Interdisciplinary Discussion Group: Language, 23rd January 2012

Interdisciplinary Discussion Group: Language

On Monday 23^rd January, the University of London Interdisciplinary Discussion group met for the third time at King’s College London. The topic in question was ‘language’. We had presentations from linguist turned neuroscientist ‘Ōiwi Parker Jones, and from Lecturer in English and RCUK fellow in Science and Technology, Laura Salisbury. Both talked about language within the context of their work, and this was followed by a discussion with the audience.

‘Ōiwi began by commenting that although he has a background in both linguistics and neuroscience, this is the first time he has ever been forced to bring them together. He discussed Chomsky’s theories of language, reflecting on how exactly language works, before moving on to discuss his current research which concerns predicting language recovery after brain disease by examining the networks that get created in the brain. He also speculated briefly on where, if at all, we can locate language in the brain. He ended by tantalisingly quoting from recent work (Schnupp, Nelken and King, 2011) which posited that language is ‘telepathy’ as it concerns projecting your thoughts into the head of another and vice versa.

Laura Salisbury then discussed her work on Beckett and aphasia which he has been working on with Professor Christopher Code, an aphasiologist based at the University of Exeter. She traced affinities between Beckett’s presentation of language as something which can be both consciously constructed and pre-consciously and involuntarily uttered and the work of psychologists and neurologists during the contemporaneous and preceding period. She argued that Beckett’s work often vomits forth words which will never fully correspond with the intentionality of his texts, and so it is with us. She related this in particular to the work of the late-nineteenth century neurologist, John Hughlings Jackson who thought that language production involved both conscious and pre-conscious processes. In 1864 he wrote a paper concerning the speech automatisms in aphasics, and Salisbury related this to Beckett’s literary works.

These two wonderful and diverse presentations were then followed by a long and lively discussion between the speakers and audience members. The discussion covered topics such as how to read fMRI scans, the links between neurology and cybernetics, research into animal communication, artificial intelligence and the differences between historical and non-historical interdisciplinary research.

The details of the next meeting will be announced shortly on the discussion group’s website.

Medical Humanities Research Network Scotland (MHRNS) Symposium 2012

The first symposium of the MHRNS will be held in the School of Critical Studies, University of Glasgow, on Saturday 28 April 2012.

The RSE/Scottish Government-funded MHRNS aims to enable greater and more sustained collaborative research within Scotland in the medical humanities. The network’s website is available at: http://www.gla.ac.uk/mhrns

The symposium addresses two of the network’s themes: “Why Historicise?” and “Theory into Practice”.

Abstracts of up to 250 words for 20-minute papers on topics such as those indicated below are invited for submission by 18 February 2012. We welcome submissions from clinical practitioners as well as from academics in medicine and the humanities.

“Why Historicise?”

Medical progress and/or regress.

• How can medical history work with the other medical humanities?
• How can history inform clinical practice?

“Theory into Practice”

What is the value of theorising medical practice with the humanities?

• The theorisation of medical practices and roles other than the physician’s (e.g., the “health professions” as defined by HPC, complementary medicine, nursing, animal medicine, portering, administration, etc.)
• The utility, or otherwise, of the medical humanities.
• How are the humanities (mis)understood by clinicians? And vice-versa.

The Keynote Speakers will be:

Dr Thomas Rutten, Newcastle University, on ‘Why historicize when shaping medicine’s future?’

Dr Maria Vaccarella, King’s College London, on ‘Narrative Epileptology’

Please send abstract as an email attachment (.docx, .doc, .rtf, .pdf) to arts-mhrns@glasgow.ac.uk.

Deadline for abstracts: 18 February 2012

Authors will be notified of paper acceptance by 1 March 2012

 

Medical portraiture workshops

The first workshop of the CHH’s Medical Portraiture strand took place at the end of the Summer term last year. The strand’s three members were joined by fellow academics interested in how portraits can speak to histories of medicine. The day commenced with Prof. Ludmilla Jordanova’s comments on the genesis of the strand and on some of the conceptual issues connected with defining the genre of portraiture and clarifying what is meant by “medical”. Douglas James then introduced portraits of three patients (Alexander Pope, John Keats and George III) and explored how different technical and design features of their portraits could express their medical relationships, especially those with their carers and portraits’ commissioners. Dr. Keren Hammerschlag closed the first panel by presenting group-portraits of later-nineteenth-century surgeons, in particular Sir Henry Thompson’s circle. She argued that surgeons’ group portrayal was a move in their wider strategic socio-cultural efforts to be seen as sociable erudite gentlemen.

There followed an open session in which all the delegates – who included museum, archive and gallery professionals – could introduce their own work (and resources) and its intersections with the study of portraiture. It was especially interesting to hear some trans-Atlantic perspectives on America’s less mature interdisciplinary cross-fertilisation, as well as to get a sense of the vast array of understudied sources lurking in various institutions across England (for instance, the Surrey History Centre in Woking).

In a delightful serendipity, the second session opened with two papers that examined the same set of sources: photographs of patients admitted to Holloway asylum. Prof. Susan Sidlauskas argued that ‘aestheticised’ before and after photographs were crucial in analysing patients’ recovery or improvement. Dr. Katherine Rawling, by contrast, approached the photographs from a psychiatric perspective and teased out their polyvalent meanings for the patients’ doctors. The session concluded with Dr. Katherine Foxhall’s examination of self-portraits made ‘under the influence’ of migraine auras. She explored their historical diagnostic and therapeutic uses; and, relating her examples to Goya and Kahlo in particular, asked important questions about the implications of ‘migrainous art’ on the genre of self-portraiture.

The workshop’s final panel comprised another two intriguing papers on British colonial nurses and ‘Patient Zero’. Dr. Rosemary Wall, in a paper which chimed with Keren Hammerschlag’s, showed how photographs could characterise nurses’ identity in settings (including back home in the metropole) that were affected by their status as female colonial health professionals. Finally, Dr. Richard McKay explored some photographs of Gaetan Dugas, or Patient Zero. In particular, he charted how Dugas’ face became synonymous with the AIDS epidemic, and how we might compare the media’s uses of Dugas’ portraits with Dugas’ private shots.

The day closed with some final remarks from Prof. Jordanova. Among them was a commitment to holding another workshop. This I’m delighted to announce will take place on the 23rd of May this year at the Wellcome Trust: see

http://www.kcl.ac.uk/innovation/groups/chh/events/Medical-Portraiture-events.aspx

for more details….

Douglas James

Human enhancement as a concern in clinical practice – Myth or Reality? An ethics workshop coming up soon in London.

The next meeting organised by the Intermural Student Bioethics Network (ISBN) at KCL with the Royal Society of Medicine Open Section will be focused on the ethics of human enhancement in clinical practice and will take place on March 15, 2012, in the Gordon Museum at on the Guy’s Hospital Campus of Kings College London.
The timetable is as follows:
1515: Registration and Coffee in the Asklepios Room, Ground floor, Gordon Museum
1530: Welcome by Chair – Dr Andrew Papanikitas, President Elect, RSM Open Section
1535-1600: Human enhancement – what is it? Why should we think about it? Dr Tom Douglas Uehiro Centre, Oxford University
1600 -1625: Cosmetic enhancement – in the eye of the beholder? Dr Andrew Vallance-Owen, Group Medical Director, BUPA and Board Member, Independent Healthcare Advisory Service
1625- 1650 Human enhancement and childhood potential – Professor Sam Lingam, Consultant neurodevelomental paediatrician
1650-1715: Human enhancement -What’s the story? – Dr Pete Moore, Science Journalist and author
A panel discussion will follow. Afterwards all delegates are invited to continue the conversation over a glass of wine and nibbles in the the Asklepios Room.
The Gordon Museum entrance is on the mezzanine floor of The Hodgkin Building of the Guys Campus, nearest tube/train is London Bridge (St Thomas’ Street Exit).

A ‘contextualized’ reply to Wendler’s new justification for pediatric research devoid of therapeutic benefits.

David Wendler, head of the Unit on Vulnerable Populations in the Department of Bioethics at the NIH Clinical Center, just published a target article on AJOB where he presents new arguments for pediatric clinical research that offers no therapeutic benefits to the participating children. Some of these arguments were also presented in a more extended form in his 2010 book published by Oxford University Press and titled ‘The Ethics of Pediatric Research’. Wendler argues that research on children devoid on therapeutic benefits can be justified—provided that the risks for the participants are low—on the basis of two considerations: (i) Participating in clinical research is contributing to a valuable project and (ii) contributing to a valuable project is in any child’s broadly conceived interests.
In an open peer commentary published on the same January 2012 issue of AJOB, Mameli and I argue that Wendler’s argument is unsatisfactory in that it fails to consider the context of clinical research. By ‘context’ we refer the conditions in which participants find themselves and, more specifically, the kind of access to health care that they have. As a case study and an application of our arguments, we chose to analyse the recent COMPAS-Synflorix trial which represents an instance of a trial in which subjects were participating in research in exchange for access to health care resources that would otherwise not be available to them. We argue that under such a unique ‘context’ the fact that participants “contribute to a valuable project” -as put by Wendler – by participating in clinical research cannot by itself provide a sufficient justification for the ethical permissibility of the trial, notwithstanding the low risks involved in participation.
To note that the COMPAS-Synflorix trial represents also an instance of so-called off-shoring of clinical research to low- and middle-income countries that has been steadily increasing in the last couple of decades. More details on the COMPAS-Synflorix study can be found on this older post on this same blog. In addition, more open peer commentaries in reply to Wendler’s arguments can be found here.

Seminar on Medical History and Humanities in Science/Technology and Public Policy

Over the summer this I undertook the first Wellcome Trust Medical History and Humanities fellowship at the Parliamentary Office of Science and Technology (POST). This fellowship involves spending 3 months at POST in Westminster, researching an issue in public policy that is of interest to Parliamentarians, to produce a 4-page briefing report or ‘POSTnote’. Recently I gave a seminar on my experience there, for members of CHH, POST staff and the Wellcome Trust. This fellowship was unusual in that I was a humanities scholar amongst scientists, and in the seminar I reflected on what this meant in a policy environment and, indeed, what value such an academic background could have in the context of report-writing for Parliamentarians.

My research at POST (available as a pdf: POSTnote 391) addressed issues concerning the ageing workforce in the UK: as we live longer, the age profile of the workforce is increasing and more people will face pressure to work later into life, for various reasons (predominantly financial). With recent debate over the reform of pensions, which has been highly controversial, numerous policy-relevant questions arise across a broad range of domains, from economics to ergonomics. These range from how employers may adapt to the ageing demographic of their workforces, stereotypes about older workers (both positive and negative) to how individuals perceive retirement, what challenges or barriers they face to staying in work or finding new employment, and, perhaps most pertinent to the medical humanities perspective, how health status affects one’s capacity and willingness to work beyond retirement age.

Whilst other policy issues researched at POST belong squarely in the domain of science and technology, the ageing workforce leant itself more to research from a humanities perspective. It is an emotive, personal and politically fraught concern which impacts individuals in very different ways, and it felt important when conducting the research to convey a coherent and ultimately humanistic narrative of the issues being addressed. As a researcher within the philosophy of psychiatry and mental health, I could not bring knowledge expertise as such to this research, but rather a more general set of skills that proved valuable in picking apart the complexity of the issue and pursuing important lines of questioning. For example, training in the humanities equips one for independent and open-ended research, being comfortable with broadening out one’s scope of enquiry rather than being focused on problem-solving within one particular domain of expertise. This broad scope seemed essential for tackling an issue as expansive as ageing and employment

One of the issues raised in the seminar discussion that really struck me was this: few Parliamentarians have scientific training and indeed most university-educated Parliamentarians come from a humanities background, and in fact POST exists partly to provide a sophisticated lay analysis of scientific issues that may otherwise be out of reach. Essentially, the question ran, why did POST need a humanities scholar in its midst? The answer I think, and I have been ruminating on this for a while, concerns communication, and I believe the medical humanities is excellently positioned to provide a framework for this answer. Scientists can often do an excellent job of communicating very complex concepts, causal pathways, phenomena and evidence-bases in simple, concise ways to a lay audience, and this is crucial for informing, for example, Parliamentary debate around certain scientific topics. However, the link to policy can be somewhat blurred by uncertainty over what to do with the information provided: how to connect evidence (and I use this term rather loosely) with potential ideas about what to do, and how different decisions may impact on people, communities, the environment, the economy, and so on, all of which are important for informing debate in Parliament. In the context of my research, one particularly pertinent and potentially explosive issue here was that of proposed increases to the state pension age: economically necessary perhaps, but invoking a huge range of emotive reactions from potentially affected individuals, despite evidence that they are likely to live longer and experience a longer retirement than their parents.

Now, the humanities may be able to provide an insight into the former two at least. Essentially (and rather simplistically) a humanities-trained scholar is likely to pursue the question: ‘but what does that mean?’ which is a question in terms of implications (what are the likely consequences of a policy, for different people and interests), context (how might this affect other connected things, rather than seeing an issue in isolation?) and semantics (literally, what do the terms and concepts used signify and do they perhaps have unintended connotations?) These questions seem to go some way towards bridging the gap between the evidence-base of science and the problem of what to do, in terms of policy decisions. They concern the communication between different lines of enquiry and different forms of evidence, enabling one to develop a more sophisticated understanding of what scientific enquiries, discoveries and developments can tell us and what implications they may have for the decisions government needs to make. This is of course a rather crude distinction, but I suspect it may track the right kind of idea.

It is an open question as to how engagement between science and the humanities can be successfully negotiated: there is always a risk of tokenism in inviting contributions from different perspectives, and the potential for misunderstandings in the interface between discourses approaching the subject matter from widely differing perspectives. However, if they are to interact, and in a way that helps Parliamentarians be better informed about the issues they are discussing, I can think of few better starting points than dropping humanities scholars into scientific policy environments and seeing what kinds of conversations and output fall out – not quite a randomised controlled trial but an interesting experimental methodology nonetheless.

You can read more about the work of POST and the Wellcome Medical History and Humanities fellowship. I will be writing on the Wellcome Trust blog on my experience at POST very soon.