END OF LIFE CARE
A Guide for Therapists, Artists and Arts Therapists
Jessica Kingsley Publishers, 2014
RRP £ 25.00, $US 39.95
Nigel Hartley, originally a music therapist, is Director of Supportive Care at St Christopher’s Hospice in London. He has worked in end-of-life care for many years and was co-editor of The Creative Arts in Palliative Care (Hartley and Payne (eds.), Jessica Kingsley, 2008). In this book, he shares his experience and thoughts about a whole range of issues to do with palliative and end-of-life care.
Whilst written as a guide for artists and therapists, I thought this book would serve as a useful introduction to anyone working in end-of-life care or considering it. The first section of the book deals with history, policy and current challenges and includes a discussion of how end-of-life care is evolving and what we can or should do to deliver more meaningful care to more people. He provides cogent arguments for the value of the creative arts, not just in individual patient care, but in helping to break down the barriers between hospices and end-of-life care and the general population—it’s about the exhibition of art, concerts, choir performances, the quilting project, the schools’ program and the like. The second part is a series of chapters that discuss most aspects of end-of-life care in a variety of settings. Each contains the thoughts and feelings of a person from the creative arts (including a professional opera singer turned music therapist, an artist, a musician, an arts therapist and an integrative arts psychotherapist) together with an introduction and concluding reflection by Hartley. The last part of the book is about starting out, looking after yourself, research and development.
This is an insightful review of what working in end-of-life care is all about. Whilst directed to those from the creative arts, anyone who works in end-of-life care, or is considering it, will be better off for reading it.
ADVANCE CARE PLANNING
Communicating about matters of life and death
Rogne and McCune (eds.)
Springer Publishing, 2014
RRP $US 65.00, £ 55.95
Review copy supplied by Footprint Books.
This book is intended to help facilitate meaningful communication and effective decision making about medical care at the end of life. With contributions from practitioners and scholars from a range of disciplines, it provides a good overview of what remains a difficult and disorganised field and for which there is no simple answer. It is well known that many people have difficulty both asking and answering the important questions about end-of-life care for themselves or their loved ones. Advance directives have not been taken up as widely as originally hoped and a number of the contributions focus on the barriers to effective advance care planning. Advance directives can be complex and difficult to complete and may subsequently not be interpreted as intended. Should we be concentrating on facilitating meaningful conversations between patients and their families and health care professionals, and if so, how? Do existing programs, such as Respecting Choices, provide the answer? The contributions to this book represent a range of views and ideas and will appeal to anyone who works in palliative care and has an interest in effective advance care planning.
THE END-OF-LIFE NAMASTE CARE PROGRAM FOR PEOPLE WITH DEMENTIA. 2e
Health Professions Press, 2013
RRP US$ 38.99, £ 20.60
Review copy supplied by Footprint Books.
Namaste is a Hindu expression meaning “To honour the spirit within”. Namaste Care is a program of appropriate, patient-cantered palliative care for people with advanced dementia, aiming to optimise their quality of life and ensure a peaceful death. The opening chapters describe what Namaste is - “create a calm peaceful setting, slow everything down, always touch with love, treat everyone as a unique individual, respect choice and, above all, honour the spirit within” - with an emphasis that it is for at least four hours a day, seven days a week. There are chapters about the care team, the physical requirements for a Namaste Care room, what happens in a Namaste Care day, and the necessary steps to establish a Namaste Care program. The last emphasizes that it requires energy and commitment but is not necessarily expensive. The final two chapters are about quality of life and caring for the dying. Throughout, she recalls some of the successes (and failures) she has had establishing Namaste Care and there are numerous clinical stories. I liked the one about bringing in a few basins of fresh snow as a seasonal sensory treat, and the glee on the faces of the (demented) residents as they all tried to make snowballs.
I am not qualified to judge Namaste Care and all the benefits it is meant to bring, but I felt at home with the principles of care, which she acknowledges were moulded from the palliative care principles of Dame Cicely Saunders (and numerous others), and developed to meet the needs of people with advanced dementia. If you work with patients with dementia or in a long-term care facility with significant numbers of people suffering dementia, this book should be of interest to you.
ON BEING ILL
NOTES FROM SICK ROOMS
Paris Press, 2012
RRP $US 16.00, £ 9.47
These essays by Virginia Woolf (1882-1941) and her mother, Julia Stephen (1846-1895), provide very contrasting perspectives on illness but both contain truths relevant to how we should approach the care of the sick.
Virginia Woolf´s On Being Ill is about how illness may lead to an altered mental state or a change in your view of things, or people, or relationships and what might be done to best support one through it (from the patient’s point of view). There is an introduction by Hermione Lee, President of Wolfson College, Oxford and author of Virginia Woolf (Chatto & Windus, 1996), which provides useful background and context.
Julia Stephen’s Notes is a fascinating snapshot of the practice of nursing in her time—from how the nurse should conduct herself to dealing with crumbs in the bed. Some of her pieces show how things have changed—that if patients asked questions about the seriousness of their condition, ‘her watchers…must lie freely.’ Others I found a little amusing: if a nurse feels she is getting upset herself in the management of a hysterical patient, she should leave the room immediately…‘A second away, a whiff of salts, will steady her nerves.’
There is a thoughtful afterword by Dr. Rita Charon (Narrative Medicine: Honouring the Stories of Illness, OUP, 2006), which ties these essays to the practice of caring in the twenty-first century. If you have an interest in the history and practice of caring (not just nursing), you should find this book both interesting and a pleasure to read.
Note for authors and publishers: If you wish to have your book reviewed, please send to:
Dr Roger Woodruff
IAHPC Bookshop Editor
210 Burgundy St, Suite 9
Heidelberg, Victoria 3084
Note: Review copies become property of IAHPC and are not returned to the author. Only palliative care related books which are previously approved will be reviewed. Due to the large number of requests, we can´t provide exact dates of when books will be reviewed.