New Edited Collection - The Patient's Wish to Die

The Patient’s Wish to Die - Research, Ethics, and Palliative Care (2015), Edited by Christoph Rehmann-Sutter, Heike Gudat and Kathrin Ohnsorge. Oxford: Oxford University Press.

This new edited collection is on Google books, but I haven't received a real copy yet. It is due to arrive in July and includes contributions from palliative care professionals and end of life care researchers. The book is divided into three broad sections on research, ethics and practice. I have a chapter in the book on 'Illness narratives, meaning making, and epistemic injustice in research at the end of life'. 

Here is a short excerpt from the Introduction. Both the Introduction and my chapter are available in full on Google books. You can find more details about the book on the OUP website.

Wish to die book.jpg

Introduction

In many countries there has been a public debate over several decades about the appropriate regulation of hastening death and other aspects of end-of-life care. The debates, however, often run in ideologically constrained circles and are not sensitive to the finer tuning of both the clinical reality and the subjective experiences and moral understandings of patients themselves as their lives draw to a close. This book brings together different research approaches to examine these phenomena, and makes them accessible to a broader audience than just the small, but international, ‘wish to die’ research community. Empirical research has been carried out for more than a decade on the phenomena of wishes to die and desires for a hastened death at the end of life. This book reflects the best currently available knowledge and research methodologies about patients’ wishes at the end of life, together with a series of ethical views and a discussion of the clinical implications for palliative care.

When somebody says, ‘I really want to die’, ‘I would prefer to be dead soon’, ‘Please,
let me die more quickly’—or similar things—the underlying wish expressed may be
very complex. In order to respond competently and compassionately, the healthcare
professional needs to grasp the dimensions immanent in wishes to die, both in general
and in regard to the concrete individually expressed concerns of the particular patient.
This requires deeper knowledge of the structure, the meanings, and the dynamics of
this phenomenon and of the interactions in which it is embedded. However, talking
with patients in depth about wish to die statements is still seen as challenging, and is
therefore often avoided by healthcare professionals (see Kohlwes et al. 2001). A superficial
understanding of the statement risks taking it at face value (just fulfilling what is
requested in the name of a superficially understood ‘patient autonomy’) without recognizing the patient fully as the person she or he is, who may be experiencing deeply
ambivalent feelings at the end of life and who might express this as one element within
a larger dialogue with healthcare professionals and relatives—and also in an inner dialogue
with her- or himself. Another risk would be to ‘medicalize’ the expressed wish
to die, i.e. to treat it as a sign or symptom of depression or anxiety in every single case
which automatically demands treatment. Both reactions can lead to suboptimal palliative
care, to shortcomings in the caring relationship, and, if things develop unhappily,
even to an unnecessary abandonment of the patient.

The intended audience of this book is primarily healthcare practitioners involved
in end-of-life care but also interdisciplinary scholars interested in palliative care and
medical ethics, including its specific challenges in the last phases of life. The book attempts to contribute in an open manner to the medical, ethical, and public debates on
this topic. It aims to be sensitive to the spiritual and existential dimensions of dying and
to the different cultural views that provide meaning to the individual.

We have invited some of the best-known palliative care research specialists and ethics
scholars from different countries to reflect on this sensitive issue based on an empirically
informed and patient-centred view. Many, but not all, of the authors discuss the
topic from a hermeneutical, phenomenological, or narrative perspective. The collection
includes palliative care practitioners and end-of-life scholars from countries where
different forms of assisted dying practices (such as assisted suicide or euthanasia) are
legalized and from other countries where they are not.

 

 

What is music thanatology?

I have only just come across the podcast of a talk by Gerry Prince, a music therapist. This is disconcerting because Gerry’s presentation was recorded at my book launch for Death and the Migrant in November 2013. I have often thought about this mesmerising presentation because of my interest in sonic selfhood and because it makes an important contribution to the discipline of ‘music thanatology’.

What is music thanatology?

Cluny Abbey, Creative Commons

Cluny Abbey, Creative Commons

The roots of the practice are claimed to lie in tenth century Europe, when William the Pious, Duke of Aquitaine, gave a fertile plot of land in Cluny to Berno, a Benedictine monk. Going against convention at the time, William stipulated that the monastery - in the Burgundy region of France - should be free to pursue its spiritual life without interference from his family or local bishops, being accountable only to Pope Sergius III. The philosophy and devotional practices nurtured at Cluny were known for four qualities: the recognition the monks gave to the human need for beauty, their skills in conflict resolution between feudal groups, the development of traditions for commemorating the dead and monastic medicine.

In the Cluniac infirmary, manuscripts or customary record that dying people were tended to body and soul with music and song. The acoustic anointing of dying people with live music – usually singing and harp playing – has been described by Therese Schroeder-Sheker, as weaving ‘tonal substance responsorially over, around, and above the physical body of the patient, from head to toe’ (p.90).

Schroeder-Sheker is a musician, clinician and founder of the School of Music Thanatology at St Patrick's Hospital in Montana. A sub-specialty of North American palliative medicine, music thanatology sees itself as providing ‘physical and spiritual care of the dying with prescriptive music.’ The Chalice of Repose Project, explains the aims of this sublime care,

…music-thanatologists work with those who are actively dying (24-48 hours) or have received a terminal diagnosis, usually approximating six months. The goal of music thanatology and prescriptive music deliveries is at least four-fold: relief of acute and chronic physiological pain and/or spiritual or interior suffering; the creation of the supportive conditions which can facilitate reconciliation and meaning in the face of mortality and suffering; a blessed or peaceful or conscious death which is returned back into the fullness of life and the whole human life cycle; the transformation of the personal, familial, medical, cultural, and community experiences of death.

Schroeder-Sheker says that the inspiration for her musical palliative care came from a man she had met in the 1970s. He was dying from emphysema and very much alone in a care home. Schroeder-Sheker remembers him in physical and social pain, unable to swallow, ‘sometimes vicious, often brittle and selfish’ (p.87). Engulfed by a thick rasping distress when she entered his room towards in the last hours of his life, Schroeder-Sheker climbed into the man’s bed and propped herself up behind him midwife-like, relieving some of his weight. She began to sing and sway their bodies in rhythm. ‘I made my way through the entire Mass of Angels, the Adora te devote of Thomas Aquinas, the Ubi caritas, the Salve Regina, the Mass of the Blessed Virgin Mary’, she recalls.

For all I knew, he could have been Eastern Orthodox or Jewish, because all the residents were Russian émigrés, but I never knew the details of his life. The chants seemed to bring him balance, dissolving fears and compensating for those issues still full of sting. How could they do anything less? These chants are the language of love. The repertoire had become the chalice that held him up into true repose. Long after his heart ceased to beat, I was allowed to hold him. (p.87-8)

There is an element of mystery to consciousness, feeling and the alleviation of suffering at the end of a life. But the play of unseen waves and vibrations across skin, bone, hair and muscle that is hearing is believed to be the last flickering remnant of our sensory connection to the world before we die.

Today, music therapists can be found in hospices and in palliative care teams (depending on where you live – unfortunately specialist palliative care is still a postcode lottery). You are more likely to find drums, guitars and tambourines rather than harps; perhaps reggae, pop and folk songs, alongside hymns.

While Schroeder-Sheker’s original account of the Christian hymns she sang for the Russian (possibly Jewish) man, acknowledges the cultural and religious significance of deathbed music, she skips over her cultural commandeering of his last moments of life. It all feels a bit ethically and professionally iffy. We are also left with many questions about Schroeder-Sheker’s claims. Is the content of the music itself insignificant? Was the man’s apparent repose a result of the music, the comfort of close contact with another human being, or of being held in a position that helped him to breathe more easily? Perhaps all three?

I am being vague here because there are several theories about how music and its different qualities (vibration, rhythm, pitch, force, motor effects, familiarity) can affect our well-being and relieve pain. As far as pain goes, there are two broad explanations. One is that music can distract our attention away from pain. The other claim is that music stimulates the release of opioids, the body’s natural analgesia.

Still, this is getting ahead of myself. If my reading of the science literature is correct, there is so much that we don’t know about the deep chemical structures that underlie hearing. The one thing that we are more certain about is that at the molecular level, hearing and touch are both characterised by ‘a single physical parameter – force’ (p.647).  In other words, to hear is to be touched. And to be touched whether we like it or not.

This vulnerability to acoustic ‘touch’ reminds me of what the feminist philosopher and phenomenologist, Rosalyn Diprose, calls ‘corporeal generosity’. ‘It is because bodies are opened onto others, rather than being distinct,’ Diprose argues, ‘that we can act, be affected’ (p. 69). Not surprisingly, Diprose’s work has been concerned with the ethical dimensions of these generous and unruly exchanges between bodies.

For me, Gerry Prince’s presentation of his music thanatology is a spellbinding demonstration of corporeal generosity and its cultural inflections in care. Gerry played us three recordings that he had made in a care home with an African Caribbean woman with dementia. Again, as in Schroeder-Sheker’s story, there is the suggestion of the woman’s social pain in her isolation. When Gerry first met her, she was "severely depressed" and had lost the ability to speak and communicate. She could be aggressive and was sometimes difficult to care for.

Image of Gerry Prince at my Book Launch by Marina Silva

Image of Gerry Prince at my Book Launch by Marina Silva

As his work with her developed over weeks and months, we heard the woman begin to join Gerry in singing, in a sort of call and response or antiphonal style. The first two pieces that Gerry serenaded her with were the Scottish folk song My Bonnie Lies Over the Ocean and later Nobody Loves Me. “So, she was singing”, Gerry said, “We couldn’t have any conversation, but she was kind of able to claw back a cognitive sense of herself that she could put into a song structure.” For Gerry, the recording of Nobody Loves Me marked a milestone in their relationship, "She extemporised that song. She made it up and there’s really a high degree of musical awareness and ability and I challenge anybody in this room to do what she does, on the spot.”

The last recording that Gerry played for us, was made two weeks before his last session with the woman. In this recording, we heard her babbling, “with words taking her from isolation into relationship”. For Gerry, “Songs are narratives. They are musical diaries. They tell the stories of our lives”. With hindsight Gerry felt that Nobody Loves Me could be an immigrant’s narrative. It had made him think about his father’s generation, the Windrush generation, to which the woman also belonged. The final extract was Gerry’s rendition of the Jamaican folk song ‘Linstead Market’. It’s about home Gerry told us, “Everyone wants to die at home”.

The monks at Cluny felt that the architectural organisation and receiving of sound in a space could allow for epiphany - an opening out to the richness of life and what lies beyond it. This belief is not dissimilar to the philosopher Gilles Deleuze's ideas, which render music as the spiritualisation of the body,

When music sets up its sonorous systems and its polyvalent organ, the ear, it addresses itself to something very different from the material reality of bodies. It gives a disembodied and dematerialised body to the most spiritual of entities. (p.47)

The choir space at Cluny is said to embody the monks’ belief in the spiritual and healing properties of music. The monastery is renowned for its intricately carved eight capitals - the top aspects of the stone columns - that surrounded it. The space was called the deambulatorium angelorum - the walkway of angels. I am thankful for those like Gerry Prince who help us to imagine and hear this walkway - and its angels - differently.

 

Presentation Fever and Podium Affects - Yasmin Gunaratnam

In her book ‘Dust’, Carolyn Steedman, gives a visceral account of Jacques Derrida’s, ‘Archive Fever’ (1). Steedman's fever breaks out during her archival research, most often in the twilight hours, in a dodgy low-budget hotel. Unable to sleep, the historian tries her best to avoid the grubby blankets and debris left behind by other bodies. Obsessing about the bed, Steedman confides, is a screen anxiety,

What keeps you awake, the sizing and starch in the thin sheets dissolving as you turn again and again within their confines, is actually the archive, and its myriads of the dead, who all day long, have pressed their concerns upon you…You think: I could get to hate these people; and then: I can never do these people justice; and finally: I shall never get it done. (p.17-18)

My screen anxiety during fieldwork also comes out in insomnia and when I do manage to fall asleep, teeth grinding. Like Steedman, I worry myself silly about the amount of work that I need to do and failing those I have met, whether in the flesh or in the archive. At night, when all sense of the duration of a second, a minute, an hour is wildly distorted, feelings flare up from a low grade anxiety into something more crazy and metallic.

With me, the fever seeps out from fieldwork into the public presentation of my work, when research responsibilities meet the weight of institutional and disciplinary orthodoxies and rituals of public performance. It is a tension captured by Gayatri Spivak’s notion of ethical responsibility, as being `caught between an ungraspable call and a setting-to-work' (p.23). This ‘setting-to-work’ has different facets to it in Higher Education, depending on who you are and where you are. Black scholars - those who have ticked the cramped and flawed boxes of Black African/Black Caribbean/Black other - are especially marginalised and vulnerable in the UK. Of the UK’s 18,500 professors in 2013, 85 were black, 17 were black women. Recent initiatives, such as ‘Why is my curriculum white?” and ‘Why isn’t my professor black?’ have unearthed how racism and other forms of institutional power weigh down and damage both teachers and students. We can be subject to, and feel, what Nirmal Puwar describes, via Franz Fanon, as ‘super-surveillance’. For Puwar, ‘bodies that are out of place have to work harder to convince people that they are capable’ (p.61). Out-of-placeness, super-surveillance and 'presumed incompetence' are electrified when we take up public space.

Despite technological advances, there has been surprisingly little change in academic habits or in what is expected of speakers. Paternalistic authority and certain bodily dispositions are still prized. The physical layout of conferences and seminars speaks volumes of the tenacity of these outmoded conventions. In an article, ‘Shape Structures Story’, Rosemary Garland Thomson, contrasts the habitat of conferences for disabled people with “wheelchairs, sign language interpreters, personal assistants, closed captioning screens, white canes, speech synthesizers, crutches, service dogs” (p.120), and more traditional academic gatherings. In Garland Thomson’s view, “There’s a sense that much more is going on here than at more ordinary conferences, where everybody just sits quietly and unobtrusively in rows of chairs staring intently at a placid speaker behind the podium”. If we stop to think about the set-up of public events for bodies that are not healthy or are disabled, what is valued and expected – confidence, fluency, succinctness, clarity in speech, standing, the long days, the packed programmes, the podium itself – are ridiculously unimaginative.

Photo by Media Diversified

Photo by Media Diversified

In my work on diasporic dying, I have long been struck by the recurring metaphor of tightrope walking, used by care professionals to convey the perilous inching along between the extremes of ‘getting it right’ and ‘getting it wrong’. It’s a vivid image of precarity; of balancing knowledge, training, risk, intuition and skill. The unpredictable moment-by-momentness of it comes close to what speaking in public can feel like, particularly with some audiences. Behind a podium or table, often being the only woman or speaker of colour at an event - sometimes feeling that this might be the reason I have been invited - and looking out into a sea of institutionalised sameness is destabilising, even scary. A lifetime of disparate insecurities can condense. The times that I have been been among a diverse panel of speakers are so rare that they stand out as treasures.

If you are a minoritised scholar in the social sciences or humanities, talking about marginalised experiences, or perhaps drawing on your own life, you can find yourself up against the recursive entanglements of what Miranda Fricker calls ‘hermeneutical injustice’. Hermeneutical injustice is at play, Fricker believes, “when someone’s testimony is not squarely disbelieved but a conceptual impoverishment in a particular culture prevents that person from being able to clearly articulate their testimony” (p.533).

A danger of an awareness of hermeneutical injustice, as it plays out for speakers, is that it can nourish self-delusion or defensiveness. If we haven’t put enough time or care into our research and preparation, the chances are that our ideas will be poorly articulated. More perversely, thanks to liberal paternalism, sloppy, superficial presentations can seem as if they have gone down well. “I keep seeing intensely performative ~love~ of black women by white women on Twitter”, the journalist Julia Carrie Wong, tweeted recently, “that feels less abt the object of love than the subject”. If we are already feeling insecure, needy or defensively arrogant, it’s much easier to believe the hype than to take a long critical look at the quality of our work. The other side of this, as Ann Phoenix has pointed out, is that when women of colour speak or write, our theorising is received as personal experience. For some of us, our theory is less theoretical.

 

Sara Ahmed's thoughts on the fragility of the figure of the feminist killjoy describe some of the mixed-up energies and histories that I have begun to think of as ‘podium affects’. There are projections, selective hearing, pre-emptive judgements and the huge emotional labour that we often put into not being the killjoy who disrupts a seemingly congenial atmosphere with too much critique. These are political feelings for Ahmed. At the same time, she cautions, we should be alert to the consequences of what we do in order to survive. Drawing from Audre Lorde, Ahmed writes,

I have shared this quote from Audre Lorde before: “in order to withstand the weather we had to become stone.” Becoming stone: it is a requirement to harden in order to survive the weather, the relentless pounding on the surface of the body. But she was also saying here something even more challenging. That by becoming stone, by making ourselves into harder matter, matter that will less easily shatter, we might harden ourselves from each other; we might in becoming less soft, be less able to receive each other’s impression.

To create opportunities for dialogue, rather than to profess without engagement requires vulnerability and what Sayantani Das Gupta, in the context of medicine, calls ‘narrative humility’; being open to others and to being undone. I think of its opposite, narrative arrogance, as a speakerly version of what queer theorists have identified as a ‘paranoid’ stance, where the critic is sovereign, "knowing, when others do not, the hidden contingencies of what things really mean" (Weigman, 2014, p.7).

Of course, it’s impossible to know in advance whether openness to others will be part of a generative dialogue or will lead to something altogether more destructive, but the institutional and epistemic conditions in which we speak play a hefty part. For the feminist writer and activist, Rahila Gupta, the movement of othered bodies into public spaces raises difficult questions: “When we are accommodated by the powers that be, is that a sign that our ideas have lost their radical edge? Is that necessarily a bad thing? Could it indicate that public opinion has shifted in our direction? Should we take that as a sign of our success?”

There is a lively body of writing on the politics of conferences, the curriculum and the classroom. There is still relatively little on the phenomenology and politics of presenting. Without these wider discussions, do we risk pathologising or misreading the bodily signs and sensations of presentation fever, recreating a Cartesian mind/body divide that valorises disembodied ideas and a mutated version of Donna Haraway's 'modest witness' (2)?

And let's not forget the after-affects. You’ve finished your talk and responded in the Q&A to the thoughtful gifts, barbed firecrackers and the monologues from those I think of as optometrists ('I' specialists). You’ve mingled afterwards and you may even have received further comments and thoughts through email or social media. Although I feel as if I absolutely know when a presentation has gone badly, I never really know how a talk has gone - ‘gone’ in the sense of journeyed. Feelings of bewilderment and loss accompany any presentation because of the peculiar mix of intimacy and distance involved. Inevitably, as the sociologist Erving Goffman believed, the ‘speaker and the audience rightfully return to the flickering, cross-purposed, messy irresolution of their own unknowable circumstances’ (p.195).

I have lived with the somatisations of presentation fever as inconvenient, annoying and sometimes exhausting personal foibles. I think it’s time to listen to our-selves more carefully. And to take seriously - and collectively -  what our insomnia, worn-down teeth, racing hearts and nervousness might be trying to tell us.

Notes

1. Derrida gave the lecture "Archive Fever' at the Freud Museum in London, in 1994. It was a rumination on what’s going on between the texts preserved in an archive and subconscious memories as repressed truths.

2. Haraway discusses the modest witness in relation to Robert Boyle's public experiments with the air pump. Haraway's argument is that in the sixteenth and seventeenth century, ideas about the scientist as an impartial observer and knower became embodied in white, propertied men and a certain organisation and control of public space. According to Haraway,

"...the modest witness is the legitimate and authorized ventriloquist for the object world, adding nothing from his mere opinions, from his biasing embodiment. And so he is endowed with the remarkable power to establish the facts. He bears witness: he is objective; he guarantees the clarity and purity of objects. His subjectivity is his objectivity. His narratives have a magical power — they lose all trace of their history as stories, as products of partisan projects, as contestable representations, or as constructed documents in their potent capacity to define the facts. The narratives become clear mirrors, fully magical mirrors, without once appealing to the transcendental or the magical." (p.24)

 

Assisted dying - morphine and a metaphysician, please - Yasmin Gunaratnam

Anatole Broyard, Creative Commons

Anatole Broyard’s essay collection, 'Intoxicated By My illness', is a rare treasure among pathographies - witty, irreverent, unsettling (1). Broyard exalted, teased and cajoled dying people to dig deep into their imaginative reserves and to invent their own idiosyncratic 'style' when facing death.

Broyard spoke ill of illness, having little patience for sentimentality or heroism. Alongside his forthright analysis of the routine trauma inflicted upon patients in the relentless examinations and tests on their most intimate parts of the body, Broyard charted the seething resentment, fear and heady desires that can circulate among dying people. As Oliver Sacks observes, in the Foreword to Intoxicated, 'Illness clearly did not deprive Broyard of his curiosity or force - it sharpened it, focused it, as never before' (p.xii).

Not for Broyard, military metaphors of soldiering on or battling against disease. The literary critic and essayist imagined his advancing prostate cancer as a love affair with someone demanding things he’d never done before, or uncomfortably close for some of us, as ‘a lecture I was about to give to an immense audience on a subject that had not been specified’ (p.21). In its bold expansiveness, Intoxicated manages to reclaim something of dying from medicine. In the process, it questions our recourse to biochemical solutions to existential predicaments. But Broyard was not letting medicine off the moral hook that easily. I imagine he was an extraordinarily engaging and emotionally demanding patient. Not content with medicine's retreat into the abstractions of anatomical concerns, Broyard longed for a doctor who could attend to him body and soul; someone with whom he could share his 'true feelings' (2), 'not only a talented physician, but a bit of a metaphysician, too.'
 
Intoxicated By My Illness has been on my mind recently, with the growing heat from debates surrounding Lord Falconer’s Assisted Dying Bill. The bill now includes an amendment allowing a judge to establish that someone with less than six months to live has made “a voluntary, clear, settled and informed” decision to end their life. The bill is due to receive clause-by-clause scrutiny, for the second time in the House of Lords, on the 16th January.
 
Conversations about end of life decisions are important, especially in our ageing society. What makes me uneasy is how the debates seem to be dominated by certain powerful and privileged voices and positions can become polarised. You either support assisted dying or you don’t. There seems to be little room to acknowledge ambivalence, doubt or even the pressures of a broader cultural palette of ideas of what might be a good death.
 
In my research with dying migrants in England, I have come across very different approaches to pain, illness and death. Some people reject all palliation and appear to embrace pain as an experience that can be affirming of their relationship with god. Others, can choose to die consciously without being sedated, not only because of religious belief, but sometimes also out of a Broyardian sense of wanting to adventure into this last unknown.
 
And sometimes there can be a change of perspective as individuals move closer to death. After a decade of hectoring her children to help her die, when her last stages of life became imminent following a stroke, the author Michelle Henson’s mother changed her mind. A wise rabbi was able to recognise her conflicted and overlapping feelings. Henson’s worry is that social attitudes to illness and dependency, especially for older people, are influencing last wishes and that we can be too quick to seek out clinical options, “life and death is now rather like shopping” Henson writes, “consumer sovereignty gone mad” (3).

The range of views on assisted dying, for doctors too, are often glossed over or misrepresented. The geriatrician, Raymond Tallis, feels that assisted dying discussions have been ‘captured’ by a relatively small, but powerful group of clinicians. Tallis believes that despite the main representative bodies – the British Medical Association and the Royal Colleges of Physicians and General Practitioners - being opposed to assisted dying, opinion among doctors is much more ambivalent and divided. In Tallis' opinion, the majority of doctors want their representative bodies to be neutral on assisted dying. 

Professor Ray Tallis (FRCP FMedSci) is the Chair of HPAD. Ray was Professor of Geriatric Medicine at the University of Manchester and a consultant physician in Health Care of the Elderly in Salford 1988-2006. He wrote 200 research publications in the neurology of old age (epilepsy and stroke) and neurological rehabilitation.

I am not against the Assisted Dying bill. We have to be careful of not romanticising terminal illness, or of underestimating the profound suffering caused by the criminalising of those who help a loved one, or a patient, to die. Research published in October 2014, by the pro-assisted dying group, ‘Dignity in Dying’, claims that 7% of suicides in England are among those with a terminal illness. “With the ever-present threat of prosecution for assisting a suicide”, Dignity in Dying argue, “the issue is forced behind closed doors and people end their lives in unsafe, unregulated and distressing circumstances.”
 
I imagine that there are few experiences that are as frightening as ending your life alone, or slowly through starvation, as Debbie Purdy, a longtime campaigner for the right to die, did recently. At the same time, I can’t help thinking that we could miss something valuable, should we succumb to the belief that we can chemically master or suppress suffering and ontological insecurity by legalising the right for a competent adult to ask for a doctor's help to die.

I think I'm with Broyard on this one. I would like the choice of having good, inventive and compassionate palliative care. I’d also like my doctor and nurses to be metaphysicians, please.

Notes

1. Some of the essays in Intoxicated were published as articles in the New York Times.

2. The irony of Broyard’s valorising of truth-telling is that for most of his life he had denied his African American heritage. It was left to his wife, Alexandra Nelson, to tell their children after Broyard's death.

3. Recent qualitative research with people dying from cancer, in Switzerland, has also uncovered nuanced meanings in the stories patients told the researchers about their wish to die. These meanings included wanting to escape from suffering and, more often, “to spare others from the burden of oneself".

Every minute of every day - an experiment in realtime ethnography - Yasmin Gunaratnam and Les Back

Every minute of every day - an experiment in realtime ethnography - Yasmin Gunaratnam and Les Back

In this post, Yasmin Gunaratnam and Les Back discuss a project where the potential of the new devices of social research were used to support a local institution – a children’s hospice – in finding out more about how its local communities experience social and economic change. This problem, that appears deceptively simple, formed the basis of the  ‘Every Minute of Everyday’ collaborative real time ethnography with Richard House Children’s Hospice in East London.

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Queer Transgenerational Haunting in Black Girl Dangerous

'Blood memories - A Queer’s Transgenerational Search for a Scar' by Mónica Teresa Ortiz

 

Read the full excerpt here (Black Girl Dangerous)

 

'Blood memories' by Mónica Teresa Ortiz is a story about how the transgenerational haunting of past trauma intrudes into a sexual encounter in the present. In the story, eerie traces of the murder of the narrator's grandfather flash on to the body of a new lover. Ortiz uses these intrusions, and the layering of time and space that they force open, to introduce themes from recent neuroscience experiments on transgenerational epigenetic inheritance (epigenetics is the term used to refer to how the environment can affect genes).

Image creative commons wikimedia

The experiments Ortiz refers to were first reported in Nature Neuroscience in 2013, in a paper entitled 'Parental olfactory experience influences behavior and neural structure in subsequent generations' by Brian Dias and Kerry Ressler.

Dias and Ressler found that mice conditioned to fear a smell similar to cherry blossom, passed this fear and aversion on to two generations of their offspring.

Dias and Ressler conclude that "Our findings provide a framework for addressing how environmental information may be inherited transgenerationally at behavioral, neuroanatomical and epigenetic levels."

In the an interview with the BBC, Professor Marcus Pembrey (University College London), said the findings were "highly relevant to phobias, anxiety and post-traumatic stress disorders" and provided "compelling evidence" that a form of memory could be passed between generations. Pembrey added that "It is high time public health researchers took human transgenerational responses seriously."

This interest in intergenerational haunting can also be found in literature (for example in the Junot Diaz novel The Brief Wonderous Life of Oscar Wao) and in the social sciences, particularly with regard to post-colonial feminist scholarship such as Grace Cho's work 'Haunting the Korean Diaspora' which explores 'the repressed history of emotional and physical violence between the United States and Korea' following Korean partition and the diaspora.

Intergenerational haunting has yet to studied in the context of health care relationships.

 

 

 

 

Patient affects - happiness, thinking positive and Breaking Bad - Yasmin Gunaratnam

Patient affects - happiness, thinking positive and Breaking Bad - Yasmin Gunaratnam

It seems that we all increasingly looking for ways to become happier. However, it is only recently that social scientists have begun to study happiness systematically. But is it possible to be happy at the end of life? Some hold that investigating this positive emotion is an indulgent goal compared to the need to understand other aspects of human suffering. In this blog post I reflect on the valorisation of upbeat patient affects in the context of research by Jonathan Koffman on happiness at the end of life.

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A Fairytale from New Addington - Les Back

A Fairytale from New Addington - Les Back

“You can do a class analysis of London with Christmas lights,” writes China Miéville astutely. In December class distinction can be discerned through peering through the window of most London homes. In poorer homes “the season is celebrated with chromatic surplus”; while the rich and middle-class“strive to distinguish themselves with White-lit Christmas trees”

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Magnetic resonance: a case story in the making - Yasmin Gunaratnam

Magnetic resonance: a case story in the making - Yasmin Gunaratnam

Magnetic Resonance is a story that I have been developing through workshops and in consultation with those working in palliative care. It is part of my British Academy Fellowship project on social pain and transnational dying in the UK that is based upon approaches developed in narrative medicine. Please read the story and write a short paragraph to finish it off. The ending that I have written for the story is 5 lines long and I will post it in the New Year.

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Isa Muazu - the trauma of undocumented migration - Yasmin Gunaratnam

Isa Muazu - the trauma of undocumented migration - Yasmin Gunaratnam

The suggestion that we should ‘"expect a hunger striker to die" is ethically problematic and also fails to recognise the extents to which traumatic pasts and the experience of undocumented migration can take their toll upon vulnerable people.
Time is running out for Isa Muazu, a failed asylum seeker on hunger strike in Harmondsworth Immigration Removal Centre. We can only hope that when the judgment is delivered on his case that it shows some regard for the entangled and spiraling conditions that have brought him thus far

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Death in a digital world - Stacey Pitsillides

Death in a digital world - Stacey Pitsillides

Death has always been present in online systems but until fairly recently has been largely ignored. Social networking sites, in particular, have made this topic unavoidable. Within this blog-post Stacey Pitsillides discusses; the law’s approach to digital death and community responses, the service providers approach within their system and the user approach to dealing with digital death within their networks. The post provides an overview of the complexity of the topic including the ethical and legal infrastructure that needs further development and that affects any work undertaken within this area.


 

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Matilda and Me - Ria Hartley

Matilda and Me - Ria Hartley

Performance artist Ria Hartley writes about her relationship with her Jamaican born grandmother Matilda, who has dementia. Ria produced and performed ‘Matilda and Me’ a dubtheatre, biomyth (biographical mythology), as a response and tribute to Matilda that also celebrated the history of Caribbean migration to Britain, highlighting the importance of retracing and retelling oral histories and stories of cultural heritage.
 

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Queer dying - Yasmin Gunaratnam

Queer dying - Yasmin Gunaratnam

Parents face a decision of whether to bury their transgender child as a man or a woman. A man with AIDS pretends that he has cancer to avoid stigmatisation. The queering of disease, dying and grief encourages and forces new questions about the permeable boundaries between life and death and the demands of ‘queer evidence’ that José Esteban Muñoz  regards as  ‘ephemera’ - ‘the things that are left, hanging in the air like a rumor’ (p.65)

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