With the End in Mind
Author: Kathryn Mannix
This book is the valiant endeavour of a palliative care specialist to bring conversations about dying out of the shadows, and into the mainstream of society in general, and medical practice in particular. The author narrates authentic and reassuring stories of the dying process thereby dispelling ‘the sensationalised yet trivialised‘ public perceptions of death (pages 3, 6 and 153). With remarkable sensitivity and deep insight, she convincingly argued that there is ‘little to fear and much to prepare for’ in dying, supporting this with her descriptions of dying as an awe-inspiring process infused with dignity and humanity (pages 16-17). The author’s strategy to do away with the ‘taboo‘ that surrounds death was to encourage ‘simple, unambiguous conversations‘, shorn of ‘superstition and fear‘, and to dispense with what she called the artificial dichotomy between living and dying (page 5). With its distinct characterisations of death, the book eminently succeeded in conveying the ‘forgotten wisdom‘ of ‘the art of dying’, and in teaching the profound lessons of ‘how to live and die well‘ (pages 1, 5, 113 and 153).
The author’s most important objective in writing the book was to disabuse the public of its inaccurate perceptions of the dying process. She particularly wanted to alleviate the unease that typifies the public discourse on dying, and to re-accustom society with ‘the vocabulary and etiquette‘ around death. The book addressed many misperceptions of death, for example the notion that dying is always associated with pain and indignity; it attributes these misconceptions to the fact that fewer people now die in their own homes, ‘surrounded by dear ones’, a consequence of too many lives now ending in ambulances, emergency rooms, and intensive care units (pages 2 and 9). Even when people witness the dying process, the author stresses, their unfamiliarity with it makes them ‘misinterpret what they see and hear‘ (page 160). The anxiety that surrounds death has many regrettable fallouts; an example the author cites is its tendency to discourage the elderly and the chronically ill from discussing their terminal hopes and wishes, all because people dread talking about these ‘constant companions’ of the old and the sick (pages 127-128).
A recurring theme behind the stories in the book is the portrayal of how death progresses through clearly defined stages; this almost stereotypical dying process often starts with tiredness, and progresses through sleepiness and coma, and eventually terminates with the cessation of breathing (pages 22-24). The author brilliantly, and perhaps counterintuitively, likened dying to childbirth, another existential process which she says has ‘clear phases, predictable progression, needing companionship and encouragement but not interference‘ (page 188). Employing very moving prose, she described the transcendence that accompanies many deaths whereby the dying make a ‘spiritual reckoning‘ of their worth and the meaning of the life that is ebbing’ (pages 291-292). She also characterised the ‘transformation of world view‘ that moulds the dying into ‘bigger and more generous versions of themselves’, akin to ‘watching a rose unfurl to perfection‘ (pages 333-337).
The foundations of the book are no doubt the moving stories of remarkable people and their families going through the very emotional dying process. One of such compelling stories is of Sally, ‘an enfeebled woman with a vibrant mane of red hair’, whose ‘rock-solid’ denial of dying from melanoma paradoxically supported her through her ordeal, and ‘allowed her to maintain perfect equanimity, even optimism‘. Indeed, she said, Sally ‘was still planning to beat this thing as she lapsed into unconsciousness‘ (pages 75-88). Another illustrative story is of Eric, the headteacher dying from motor neurone disease, who repeatedly, but unsuccessfully, attempted to shorten his life because of his mistaken fear that he will terminally choke to death (pages 67-73). The story of Sabine, a ‘mysterious, self-contained creature’ with terminal bowel cancer, was also a tale of misguided fear of a painful and undignified death (pages 19-21). Perhaps the most poignant story, however, was of Nelly and her husband; they were unable to discuss the terminal nature of her illness because each was protecting the other from the anguish of knowing. The author noted how ‘heart-wrenching‘ it was that ‘teach member of this loving, tender-hearted couple is living a lonely lie in an attempt to save their beloved from distress‘ (pages 143-151).
The most practical aspects of the book are certainly its principled recommendations on the care of the dying. The author, for example, advocated paying ‘attention to the psychological needs and resilience of patients and their families; honesty and truth in the face of advancing disease; and recognition that each patient is a unique whole person’ (page 28). She urged practitioners to enable the dying to be the ‘architects of their own solution‘ because this is the ‘key to respecting their dignity‘ (page 89). She specifically discouraged the modern medical approach to dying, which she said ‘increasingly entangles technology with terminal care’, thereby restricting its natural course (page 10). The scope and depth of her other recommendations are astounding, ranging from breaking bad news to the ethics of assisted dying; from the benefits of cognitive behaviour therapy, to withdrawal of ventilatory support (pages 110, 143, 195-198, 206-207, and 232).
An outstanding and noteworthy feature of the book is the author’s intuitive and thought-provoking prose. This was evident, for example, when she stated that ‘the dying, like the rest of us, are mainly getting on with living‘, and also when she said the toughest job of a palliative care specialist is ‘making friends with patients who are making friends with death‘ (pages 3 and 198). The author’s prose also lightened the mood of the topic with humour, such as when she described a family’s ‘vigil around a deathbed’ in which there was vying for position: ‘most bereaved, most loved, most needed, most forgiven‘ (page 56). The author very richly and graphically characterised her subjects, such as when she depicted Walter who had advanced liver failure; his ‘skin glows an almost luminous yellow in the filtered daylight’, and his ‘muscles hang loose from his bones. His ribs protrude and his tummy is swollen‘ (pages 223-224). It is indeed her eloquent prose that animated the lessons she set out to impart; this was perhaps most evident when she declared that ‘living is precious, and is perhaps best appreciated when we live with the end in mind‘ (page 342).
This book addresses dying in a very sensitive and practical way. The content is very organised with clear themes addressing all aspects of death and dying. Whilst most of the deaths the author depicts are predictable and manageable, and occur in the palliative care setting, the author admits that not all dying conforms to this neat picture where most of what scares people about death, both physical and emotional, have been controlled. The prose is mostly uplifting, although perhaps excessively detailed in some places. The book may have benefitted from wider references to death, such as in literature and the arts; the author was however phenomenally focused, and it is to her credit that she stuck strictly to her outlined themes.
As a palliative care consultant, the author was well-placed to explore the delicate subject of death. She exhaustively reviewed the essential concepts around death, illustrating with appropriate case studies. Whilst emphasising the positive sides of dying, the author admits that not all deaths are as predictable as in palliative care settings. The key practical lessons of the book, engaging the dying and their families, and maintaining their dignity and respect, are universal, and apply to all settings in which death occur. The book is comprehensive and enlightening, packed with very helpful recommendations, and I highly recommend it to all doctors.
Publisher, Place, Year: William Collins, London, 2017
Number of chapters: 6
Number of pages: 359
Star rating: 5
Price: £6.49 (temporarily free to download)