medicine Posts

“With the End in Mind: Dying, Death and Wisdom in an Age of Denial” by Kathryn Mannix

Bereaved people, even those who have witnessed the apparently peaceful death of a loved one, ofen need to tell their story repeatedly, and that is an important part of transfering the experience they endured into a memory, instead of reliving it like a parallel reality every time they think about it. 

And those of us who look after very sick people sometimes need to debrief too. It keeps us well, and able to go back to the workplace to be reqounded in the line of duty. 

….

Cognitive therapist and palliative medicine pioneer Kathryn Mannix’s With the End In Mind is a collection of medico-narrative stories which focus on the stages of dying. Usually the stories focus on terminally ill patients as it is in such scenarios the patients and their families are anxious and fearful of impending death. The stories are based on decades of her experience with the NHS in UK. They are stories which work equally well as case studies and for the benefit of getting the point across well at times Dr Mannix has clubbed together experiences of more than one patient in one narrative. These are grouped in sections such as “Patterns”, “My Way”, “Naming Death”, “Looking Beyond the Now”, “Legacy” and “Transcendance”.

The stories included in the volume are extraordinary. It is not only the magical quality to the storytelling of experiences while sitting by a patient’s deathbed but it is the calm sense of peace and kindness that pervades every single story. Undoubtedly the crippling anxiety that grips every patient and their families as death approaches has its impact on the families. Every one has a different response mechanism in managing the situation. These may be defined by an individual’s choice of the cultural codes of behaviour they have learned to adopt while processing the dastardly news. The stories are about the experiences of all ages of patients including those who have died in hospitals or those who have died at home surrounded by family. It is always the conversations about dying with every person and their caregivers that may never be easy but has to be conducted.

Notice how often you hear euphemisms like ‘passed’, ‘passed away’, ‘lost’, in conversations and in the media. How can we talk about dying, plan our care or support those we love during dying, theirs or ours, if we are not prepared to name death?

There are many conversations recounted that are memorable for demonstrating to a lay person and the medical professional that certain bedside manners with a large dose of humility, patience, honesty, level headedness, cultural sensitivity, and empathy are required when on a death watch whether offering solace to keening mothers who have lost their babies or even the elderly.  There is one particularly straightforward conversation the “leader” ( head of the hospice where Dr Mannix worked as a young physician) had with a WWII French resistance woman called Sabine who wears her Resistance Medal and who withstood the terror of war and yet was afraid of death. She was an elegant eighty-year-old inmate who was always well mannered and well turned out. Kathryn Mannix was a young trainee in the new speciality of palliative medicine. Her trainer was the consultant in charge of the hospice who had a good rapport with Sabine as he was bilingual and would at times converse with her in French. So when he decided to have the conversation about dying with her in the presence of the nurse to whom she had confided her fears and the young physician Kathryn Mannix, no one was prepared for how the conversation would develop. For the young Kathryn Mannix this particular episode was transformative and has lived with her throughout her career as if on a cinema reel. It formed the basis of her future practice, teaching her to be calm in the face of other people’s storms of fear and “to be confident that the more we understand about the way dying proceeds, the better we will manage it”. She realised over decades of clinical practice that:

The process of dying is recognisable. There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did ( and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own. 

It is curious that Dr Mannix refers to the “art of dying being a forgotten wisdom” as coincidentally historian and chronicler of Delhi and accomplished Urdu translator Rana Safvi mentioned that she has read an account of daily life within the Red Fort during Mughal times where existed a category of women called khair salla waaliyan. They were employed in the Red Fort presumably by the noble families. Their job was to look after well being of the family. They weren’t necessarily nurses or care givers but who could make people feel good.  She thinks their job was to look after the emotional well being of the people being left behind the dying person. None exist now. It is only the professional mourners like the rudalis who continue to exist in Indian society.

[bwwpp_book sku=’97815011732400000000′]

Preparation for death is culturally specific too as with the Swedish ‘Döstädning’, or ‘death cleaning’ which is the focus of Margareta Magnusson’s The Gentle Art of Swedish Death Cleaning discussed beautifully in Christina Patterson’s essay “The ‘new hygge’: downshifting for death“. Journalist Arifa Akbar in her interview with Dr Mannix asked a pertinent question noticeable by its absence in the book itself:

AA: The people whose stories you tell in the book do not ever talk about God or an afterlife. Did you edit out these discussions? (You have said that you didn’t want to discuss religion in the context of end-of-life as it can be polarising and unhelpful.) Could you say if some patients do talk about this aspect and if it is helpful to them?

KM: People’s spirituality manifests in different ways. Where this is a religious faith, then people do discuss God and their hopes, anxieties and desires for an afterlife, as well as measuring their personal worth against the constructs of their faith. I’ve met people hopeful for heaven, fearful of hell, anticipating reincarnation, angry with God, or leaving their fate entirely in Divine hands; I’ve met people with no belief and at peace with the idea of oblivion, and others feeling sad at the ending of self-awareness; I’ve met people who have lost their longstanding faith in the face of the perceived injustice of illness; I’ve met people who discover a faith amidst the emotional storms of terminal decline.

Dr Mannix offers some thought provoking options to initiate conversations about dying as well as a way for the mourners to come to terms with their grief such as death cafes where people in similar situations could gather and share their experiences. She also provides template of a letter with possible points to consider for having a conversation about dying. She shares a list of resources that can be considered to prepare for this ultimate stage of life and recommends watching Australian intensive care specialist Dr Peter Saul’s TED Talk “Let’s Talk about Dying” ( Nov 2011). She also acknowledges Dr Atul Gawande’s books too.

With the End in Mind is a devastatingly powerful book of which extracts must be made available freely. It is certainly a book to be read cover to cover and take its learnings to heart, make them your own.  Persuade those who are anxious about the deteriorating health of their loved ones to read it. It is going to be a near-impossible task, but try nevertheless.  It is unsurprising that this book is on the Wellcome Book Prize 2018 longlist. Well deserved recognition!

Kathryn Mannix With the End in Mind: Dying, Death and Wisdom in an Age of Denial ( William Collins, an imprint of HarperCollins Publishers, London, 2017. Pb. pp.340 Rs 599 

12 March 2018 

 

Amazon for Authors, KDP in Delhi, 30 November 2017

Amazon Kindle Direct Publishing Author Academy is hosting an event over lunch at Hotel Le Meredien, New Delhi . It is to introduce and discuss their self-publishing programme– Kindle Direct Publishing or KDP.  The panel will include Sanjeev Jha, Director for Kindle Content, India, Amazon. I will moderate the conversation.

Anyone who is interested in selfpublishing their book online is welcome to attend. It could be a book or a manual ranging from fiction, non-fiction, self-help, parenting, career advice, spirituality, horoscopes, philosophy, first aid manuals, medicine, science, gardening, cooking, collection of recipes, automobiles, sports, finance, memoir, biographies, histories, children’s literature, textbooks, science articles, on Nature, poetry, translations, drama, interviews, essays, travel, religion, hospitality, narrative non-fiction, reportage, short stories, education, teaching, yoga etc. Any form of text that is to be made available as an ebook using Amazon’s Kindle programme.

In December 2016 Amazon announced that Kindle books would be available in five regional languages in India — Hindi, Tamil, Marathi, Gujarati and Malayalam. This is a game changing move as it enables writers in other languages apart from English to have access to a worldwide platform such as the Kindle. Best-selling author Ashwin Sanghi called it an “outstanding initiative by Amazon India. It’s about time that vernacular writing moved out from the confines of paperback. It will also enable out-of-print books to be made available now.” Another best-selling author, Amish Tripathi, said this will address the inadequate distribution and marketing of Indian language books, for the much larger market is the one in Indian languages. “I am personally committed to this and am very happy that of the 3.5 million copies that have been sold of my books, a good 500,000 of them are in Indian languages.” Others remarked upon the best global practices it would bring to local publishing.

Sanjeev Jha
Director for Kindle Content, India, Amazon

cordially invites you for a session on

Amazon for Authors:

Navigating the Road to Self-Publishing Success

Hear how Indian authors have used Kindle Direct Publishing (KDP) to build and reach audiences across a variety of genres

Date: Thursday, 30 November 2017

Time: 12 -1pm (followed by lunch)

Venue: Hotel Le Meredien, Delhi

This event is free. Registration is mandatory. Please email to confirm participation: jayabhattacharjirose1@gmail.com .

 

Jaya Bhattacharji Rose
International publishing consultant

 

Siddhartha Mukherjee, “The Laws of Medicine”

The-Laws-of-Medicine-216x300

Siddhartha Mukherjee is a thinking medical practitioner who is constantly researching, evaluating, placing within historical context and evolving his engagement with medicine. Every time you listen to him deliver a public lecture ( http://www.jayabhattacharjirose.com/siddharth-mukherjee-27-april-2014/ ) or read his books  ( The Emperor of All Maladies: The biography of Cancer), he makes his discipline accessible.   It is not confined to some hallow portals of obscure terms. Siddhartha Mukherjee like Atul Gawande, Abraham Varghese and Preeti Rebecca John are a minority in their fraternity. They work every day in their hospitals but they are also able to look at their discipline in an objective manner and comment upon it.  More importantly they are bringing the discourse about health into the very middle of society.

Siddhartha Mukherjee’s latest book The Laws of Medicine is part of the TED Talks imprint published by Simon & Schuster. The concept is very simple. TED Talk books take off from where the public lecture concluded. So The Laws of Medicine is a continuation of the TED Talk Siddhartha Mukherjee delivered in March 2015. “Soon we’ll cure diseases with a cell, not a pill” TED Talks, March 2015 and here is the link to the interactive transcript http://bit.ly/1O0AcPn

Listen to it. Also read the book if you can. As the author says, “This book is about information, imperfection, uncertainty, and the future of medicine.” But it is also much more. It is about the human being forever being on alert, looking for information and details everywhere and not becoming complacent, letting machines, technology and others do the thinking for you. The brain continues to be important. Apply it to any discipline.

Siddhartha Mukherjee The Laws of Medicine: Field Notes from an Uncertain Science Simon & Schuster, London, 2015. Hb. pp.80 Rs 299

25 Oct 2015 

Hansda Sowvendra Shekhar “The Mysterious Ailment of Rupi Baskey”

Rupi Bhaskey“…We are living in a free country now. Don’t we have the right to demand what is good for us?” ( p.71)

A debut writer inevitably strives to observe and write about a landscape that they are familiar with, but otherwise is little known about in fiction already available. It also helps in getting the book discovered once published. After all it is a new story, new voice and not necessarily new treatment of an oft-repeated theme. In The Mysterious Ailment of Rupi Baskey, Hansda Sowvendra Shekhar writes about Jharkhand, the Baskeys. It is about Rupi Baskey over a period of time, her relationship with the family and villagers, but what shines through is her fortitude and the choices she makes — many that seem to go against popular opinion, yet she stands by her decision. The book details a terrain, customs, people, beliefs, superstitions, faith healers and local history that Hansda Sowvendra Shekhar is very well acquainted with, since he is a working as a doctor in the region. In fact the matter-of-fact descriptions of bodily functions including birthing can only have been written by a medical professional. Stories like these are revelatory since they give a perspective of which is little known at the national level like the impact of the Kharsawan massacre of 1948 , but is of significance to the locals.

The Mysterious Ailment of Rupi Baskey was shortlisted for The Hindu Prize 2014. A well-deserved spotlight for Hansda Sowvendra Shekhar but an award will have to wait.

Hansda Sowvendra Shekhar  The Mysterious Ailment of Rupi Baskey Aleph Book Company, New Delhi, 2014. Pb. pp. 220 Rs. 295

 

Being MortalIf we shift as we age towards appreciating everyday pleasures and relationships rather than towards achieving, having, and getting, and if we find this more fulfilling, then why do we take so long to do it? Why do we wait until we’re told? The common view was that these lessons are hard to learn. Living is a kind of skill. The calm and wisdom of old age are achieved over time.  ( p.95)

…Three Plagues of nursing home existence: boredom, loneliness, and helplessness. (p.116)

Reading award-winning writer and practicing general surgeon Atul Gawande’s Being Mortal was such a cherished reading experience. His basic premise is that the conversation with people who are severely ill, with slim chances of recovery is one of the most difficult tasks a medical practitioner has. His insights into caregiving, an analysis of the US healthcare system, assisted living and an understanding of the Indian family social structure offering support similar to hospice care abroad are sharp. For instance something that is often noticed in practice, but rarely uttered is how many daughters look after their ageing parents. Yet the mantra in society, at least in India is, a son is important to have since he will care for you in your old age. Whereas Atul Gawande points out quite rightly too, “your chances of avoiding the nursing homes are directly related to the number of children you have, and, …having at least one daughter seems to be crucial to the amount of help you will receive.” I marked the book extensively and scribbled comments since it resonated with me. Having been a caregiver for my ailing grandfather, familiar with the excruciating conversations about enemas, maintained a funeral notebook where he had detailed the arrangements and been responsible for telling my surviving grandparents that their spouse had died, Being Mortal is a godsend. Atul Gawande’s perceptive observations about caregiving, mortality, longevity, quality of life as opposed to honouring the Hippocratic oath echo conversations heard often amongst caregivers. There is much, much more to read and discover in this book. Read it. Buy it.

Atul Gawande Being Mortal: Medicine and What Matters in the End Hamish Hamilton, an imprint of Penguin Books, New Delhi, 2014. Hb. pp. 282. Rs. 599 

12 Nov 2014 

Amazon for Authors, KDP in Delhi, 16 Feb 2014

Amazon for Authors, KDP in Delhi, 16 Feb 2014

I am assisting Amazon to put together a 2-hour event in Delhi. It is to introduce and discuss their self-publishing programme– Kindle Direct Publishing or KDP. Jon P. Fine, Director of Author & Publishing Relations, Amazon.com will be present. Anyone who is interested in selfpublishing their book online is welcome to attend. It could be a book or a manual ranging from fiction, non-fiction, self-help, first aid manuals, medicine, science, gardening, cooking, collection of recipes, gardening, automobiles, finance, memoir, children’s literature, textbooks, science articles, on nature, poetry, translations, drama, interviews, essays, travel, religion, hospitality, etc. Any form of text that is to be made available as an ebook using Amazon’s Kindle programme.

This event is free, but registration before 13 Feb 2014 is a must. Please email me to confirm participation:  jayabhattacharjirose@gmail.com . Details of the event are given below.

kdp-amazon

Jon P. Fine

Director of Author & Publishing Relations, Amazon.com

 cordially invites you for a session on

 Amazon for Authors:

Navigating the Road to Self-Publishing Success

Hear how Indian authors have used Kindle Direct Publishing (KDP) to build and reach audiences across a variety of genres

Guest Speakers:

  • Ajay Jain, KDP author and founder of Kunzum Travel café
  • Rasana Atreya, KDP author of Tell A Thousand Lies
  • Sri Vishwanath, KDP author of books like Give Up Your Excess Baggage and The Secret of Getting Things Done

Event details:

  • Date: Sunday, February 16, 2014
  • Time: High Tea,  4:00 PM – 6:00 PM,
  • Venue: Diwan-i-Khas, Taj Mansingh

RSVP

Jaya Bhattacharji Rose

International Publishing Consultant

jayabhattacharjirose@gmail.com

On self-publishing, Oct 2013

On self-publishing, Oct 2013

PubSpeak, Jaya

I am looking to speak to and interact with authors who have self-published in any genre or field. It could be fiction, non-fiction, children’s literature, cooking, photography, wildlife, memoirs, travelogues, poetry, medicine, academic, religion, mythology, short stories etc. They could have published printed books or ebooks or used any of online platforms like Kindle Direct Publishing ( KDP), Smashwords, Lulu, Author Solutions, Partridge Publishing etc. It could also be in any language but my impression is that these services are predominantly being offered in English only.

I would like to connect with authors who have only self published or even hybrid authors so as to understand this form of publishing. Please email me jayabhattacharjirose dot gmail dot com . Please mark the subject line as “Self-publishing”.

Also if anybody is interested in attending two events about self-publishing, to be organised in Delhi or Mumbai, please message me. It is only by invitation.

 

27 Sept 2013 

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