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bereavement

Ayesha Ahmad: ‘Lahore is an Illusion, Lahore is Everywhere’

27 Mar, 16 | by Ayesha Ahmad

The mango tree faded many shadows ago, its fruit became stones and the branches became a skeleton. Yet, the roots remained, and they embrace the soil in the womb of the earth.

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This was the cradle of my family’s birth.

Now, blood is watering Lahore’s gardens.

In sorrow, I remembered these words given to me a few days ago by my father.

 ‘Lahore is an illusion, Lahore is everywhere’

I wondered about them for sometime afterwards and I did not realise the gift that these words were to become.

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Who are we as Doctors? Why an exploration of our significance can lead to better care by Benjamin Janaway

27 Nov, 14 | by BMJ

Recently I lost a patient. A lady in her 60’s whose hand I held for months and who’s passing will stand as a turning point in my career.

Having spent several months working in oncology my view of the role of a doctor has been tested time and time again. Publically observed heuristics of the role of doctors, portrayed subjectively in television and film, novels and novellas, are the hippocratically charged and dutiful healers. Both a font of knowledge and diary of experience, the doctor is seen as a paternalistic figure and eternal purveyor of the omnipotent band aid.

In some cases, within primary care and acute medicine, this may indeed be the case. Early recognition of pathological processes expressed through familiar clinical paradigms allows for rapid reversal of such malady, leading to objective improvement of the patient and maintenance of this social perception. However my experience of secondary and tertiary care of patients with chronic conditions tells a different story.

These patients, when viewed holistically as both the sum of their experience and the filtered view of our own experience, take on significance both within day to day clinical care and the greater role of disease in their lives. Identification with disease, as I have previously mentioned, is a natural and almost unavoidable consequence of the maladaptive nature of the human mind. Our natural insecurities, developed arguably within Jungian theory to inspire adaptive development, can be argued to be destructive when applied to modern day context.

The presence of disease is not just an event in a person’s life, but an event with added context and personally subjective significance. For example, a broken hand means more to a pianist than a footballer. The subjective significance of a change in health status can be explained by the patient’s reliance on past experience and their perceived importance of such a change within the context of their entire lives. The identification of their lives with the change is what the patient sees, but the objective measurement taken by clinicians is usually less in depth.

In terms of cancer, this identification can be both freeing and incarcerating. I have worked with a number of patients, young, old, religious or atheistic with a number of different cancers of varying aggression. Some of these patients were at the start of a journey with an indefinite end, and some were at the end of a journey of indefinite meaning. For some, the end of a long fight, although sad, had changed their lives dramatically and they had lived more in a short time than they had in their lives.

My own grandfather had been diagnosed with multiple myeloma a few years ago and passed away earlier this year. Being both his grandson and a doctor in training was a balancing act, knowing more about the practical and prognostic side of his care and tempering my expectations with that of him and my family. I found this process infinitely difficult and adaptive, learning from my emotional responses better ways to address his own needs and questions.

I would like to say that one of the many lessons I learned from him is that a stoic disposition and optimistic attitude in the face of uncertainty is a great strength. Life goes on between our plans, and our aspirations and reality do not necessarily correlate and it is up to us to meet these changes head on, learn what we can and move on the future. In the treatment of cancer, and the management of my patients, this stoic and optimistic attitude, balanced with an understanding of the patients own identification and experience of disease, is most useful.

So when we consider our own significance within the patient’s experience we must remember the paternalistic view of the omnipotent healer, but also realise that we play only a part in the production of their lives. We are second to the protagonist, and must realise the overall significance of our words on actions not just on the objective clinical state of the patient, but the holistic sphere of their entire disease experience.

More and more I have realised my role as a junior physician and frontline carer is to support the expectations of the patient within a realistic schema. To attempt to best understand their view, but present it to them within a spectrum of experience based on my continued learning and reflection. The omnipotent heuristic can therefore be argued to be of less importance than the archetypal omnibenevolent. As doctors our roles are to first understand the patient and their own judgement of disease significance, and tailor our treatment and interaction in an empathetic and individualised way.

We try to act in the patients best interests, and that means not only to address the physical aspects of their disease but the entire holistic side. Within oncology, this idea takes on extreme importance, as often the societal view of cancer and its ultimate path takes hold in a patients mind. For some it is a challenge, for some freeing, and for others a less positive conclusion. Whatever the view taken, it is up to us as doctors to realise our lines in the script of the patient’s life when this plot twist comes.

For my lady, and for my grandfather, the advent of their disease granted them a new perspective and through long discussion with both I realised the beauty of a new view. Their priorities and expectations changed and they lived without fear. This realisation painted my day to day communication with both and I would hope played a part in making the last years of their lives not just bearable, but an experience they could learn from and leave their mark on the world.

For me, their mark is on my heart, a sign saying ‘Listen and stay open’.

The opinions expressed in this article are those of the author and may not represent those of SDHCT. No patient identifiable information is included.

Correspondence: Dr BM Janaway, Flat 4, Castle Chambers, 147 Union Street, Torquay, Devon TQ1 4BT

Tender: On Taking Ownership of Death and Dying by Catherine Oakley

16 Nov, 14 | by BMJ

Lynette Wallworth’s Tender: On taking ownership of death and dying

A particular highlight in the documentary category at this year’s BFI London Film Festival was the UK premiere of Tender, which follows a community group in the Australian town of Port Kembla as it seeks to establish its own, not-for-profit, bespoke funeral service. Directed by artist and filmmaker Lynette Wallworth, the film was a finalist in the Grierson Award Documentary Competition, created to recognise films with integrity, originality and social or cultural significance.

The Port Kembla community’s efforts to reclaim death from the control of multi-national corporations represents an audacious confrontation with deeply-entrenched taboos and carries a difficult but important message: we need to talk about death and dying, because fear inhibits our capacity to decide how we want to mourn or be mourned. The time between death and burial in Australia can be as little as two to three days, and the film shows that this is a period in which practical and financial decisions with enormous implications are made, often in the acute shock of grief. The community leaders in Port Kembla work to reintroduce choice into this process with characteristic determination, spirit and irreverence. Opening a workshop aimed at demystifying legal issues surrounding death and dying, the speaker breaks the ice with a reassurance that when it comes to death, “Nobody fails and everyone gets a certificate at the end”. In another bleakly comic moment, an elderly member of the community showcases one of eight homemade compacted-cardboard coffins she has commissioned, hand-decorated and designed for further customization by her family after her death.

The group’s endeavour to transform encounters with mortality is made profoundly personal as they come to terms with the deteriorating health of their much-loved caretaker Nigel, following a diagnosis of terminal cancer. In this context, their enterprise reveals a tension between the expressed and unexpressed wishes of the dying individual and the choices made by their family and friends. This extraordinarily moving and intimate portrait, beautifully accompanied by a non-intrusive soundtrack from Nick Cave and Warren Ellis, suggests that a health and social system which aims to prolong life at all costs, can in some cases divert patients and their loved ones from the inevitability of death.

Port Kembla is a steel-mining town set in a landscape dominated by factory-stacks, and the community’s challenge to the corporate monopoly on death also raises difficult questions about capitalist ownership of the human body. Reflecting on his life, Nigel expresses regret at the dearth of employment options that were available to him as a young man growing up in Port Kembla. In the post-screening Q&A, Wallworth emphasized the human tragedies generated by an industry “which so dominates a community that it chews up the lives of men.”

The film’s title plays on the multiple semantic possibilities of the word ‘tender’; often used to denote a person who tends or waits upon another, but sometimes, also, in reference to an offer of money for services rendered. As an adjective, it describes physical material that is “soft or delicate in texture, yielding easily to force or pressure.”[1] As such, ‘Tender’ epitomises the film’s central concerns with palliative care, the death care industry and the materiality of necrosis. It is this latter element which underscores the film’s most powerful scene; shot as a sequence of still photographic images, it encourages the viewer to reflect on the sanitization and technologization of death and what the manifold benefits of alternative encounters might be.

Since the film’s release in Australia, other local communities have begun to model themselves on Port Kembla and, Wallworth says, the film is, among other things, “a document containing a lot of information”, a blueprint for other local communities to embark on similar projects. Beyond this, Tender should also stand more widely as remarkable inspiration to seek new meaning and purpose in life, from facing death so nakedly.

Tender is currently seeking a UK distributor for limited release. A DVD of the film is available through the website http://www.tenderdocumentary.com.au/

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[1] Oxford English Dictionary Online.

 

Catherine Oakley is a doctoral researcher in the Department of English and Related Literature at the University of York, UK, where her thesis investigates the interrelationship between medicine, literary fiction and early cinema throughout the period 1880-1925. She is convenor of the ‘Rethinking Disability on Screen’ symposium, to be held at the University of York in May 2015 (rethinkingdisabilityonscreen.com).

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