OXFORD TEXTBOOK OF PALLIATIVE CARE FOR CHILDREN (2e)
Ann Goldman, Richard Hain and Stephen Liben (Eds)
Oxford University Press, 2012
RRP £125.00, $US235.00
This is the second edition of the Oxford Textbook on Palliative Care for Children. I have said before that I find this the hardest part of palliative care and I have great respect for those who do it and write about it. The main principles - the need for care to be child - and family-centered, the need to remain flexible for each child and family, the need for care to be based on teamwork between the child, the family and all the health care professionals, and the need for practice to be based on reflection - remain.
Section I is about foundations - history, the child’s journey, communication and ethics. Section II is about the meaning of illness and the impact on the child and family. Section III is about symptom control; there are separate chapters on palliative care for children with HIV/AIDS and care in the final hours and days. Section IV is about all those things that we need to think about in palliative care - integrated medicine, place of care, education, and quality improvement. This remains much the best book on pediatric palliative care that I have seen. If you work in pediatric palliative care, you should have a copy or at least access to one.
Oxford University Press, 2012
RRP £39.99, SUS79.95
I was impressed by this expanded and updated second edition from OUP’s Specialist Handbooks in End of Life Care series. Tightly written in bullet-point form, there is a wealth of information here. Besides the basic nephrology and the co-morbidities, there are chapters on the treatment of pain and other symptoms and another on modifying drug doses in chronic renal failure. But what I really liked were the chapters on communication (including listening), recognizing dying, how to deliver good palliative care, ethical considerations, spirituality, as well as bereavement. There is an integrated care pathway for end of life care, modified for the management of patients with end-stage renal failure. The information is accessible—there is a detailed table of contents and the index seems comprehensive. My only quibble would be with the blank pages—the system of headings in the text is very adequate, but one often had to turn the page to find the next section on the same topic. This book, which focuses on the dying phase (discretely omitted from texts in the past) will be useful for nephrologists and all the people in the wider renal team, but also deserves a place on the shelf in any palliative care ward.
Palgrave Macmillan, 2013
RRP £21.99, $IS30.00
This book is about the sociology of death and dying and covers a range of topics from death paradigms, demography, grief and mourning, caring for the dying, mass death, death and religion, and death in the media, examining changes consequent upon globalization and particularly the advent of digital communication. It is certainly a credible work for a single author, but whilst she documents the changes she rarely, if ever, offers opinions as to whether they might be good or bad. I had some trouble with her sociologist’s interpretation of a ‘death-denying society’; the patients I see are not filled with fear, or terror, about death, they just do not think about it and expect to be kept well forever or at least indefinitely.
I stumbled on some of the words used. I didn’t like “interapy”, which relates to internet-based therapy. Looking up Google, not only can you do your grief and bereavement work on-line, you can fix your depression, post-traumatic stress disorder and a number of other things. But I suppose the term ‘internet-based therapy’ is much too long 4u. I learnt that a “resomator” is an instrument used to get rid of human remains using alkaline hydrolysis and said to be much more ecologically friendly than cremation. And I leant that “prosumer” is a contraction for professional consumer, which is not quite the way it is used in the book.
If you are interested in the sociological aspects of death and dying, I can recommend this book.
Oxford University Press, 2012
RRP $US21.95, £13.99
What is a review of a book about the pink ribbon industry doing in a palliative care newsletter? Well, I think that anyone who works in palliative care would be happy to see the end of the scourge of breast cancer, particularly the women amongst us. I certainly found it very interesting, and learnt some new words along the way.
Gayle Sulik was in the process of doing her masters and doctorate in sociology when she became involved in the administration of a breast cancer organization. The critique presented here is based on more than eight years of research. It is a serious, unemotional review of the methods and achievement of the pink ribbon culture, asking whether their actions, which offer symbolic support and raise money, may do little to help the diagnosed, promote real awareness, or impact the epidemic at large. She provides a good description of the history of the movement, the in-fighting, the out-fighting, political wrangles and a lot more. I was particularly impressed with her descriptions of medical details, whether it is telling you what carcinoma in situ means or discussing the controversies about the benefits of mammographic screening, which are clear and accurate. She has interviewed many women with breast cancer and compassionately reviews the problems they describe, particularly in the emotional and psychosocial department. There were several spots where I thought she was sidetracked on gender issues, but no sensible male would dream of commenting on that.
Sulik asks some challenging questions behind the rhetoric and the spin. ‘A woman diagnosed with invasive breast cancer gets more treatment, spends more money, and has about the same chance of dying from the disease as she did 50 years ago. Why aren’t we winning the war?’ Discussion and a bit of dissent are good, they are the foundation of democracy. But reading Sulik, one gets the impression that the whole pink business has got so big that there are queues of organizations, institutions, charities, Big Pharma companies, manufacturers of mammography and radiation equipment and heaps of pinkwashing corporations, to mention a few, all pursuing their own agendas and the one and only goal of all this, to prevent or cure breast cancer, has been lost. [A pinkwasher is a company or organization that supports the breast cancer cause or promotes a pink ribbon product while producing, manufacturing, and/or selling products linked to the disease]
Sulik asks whether the pink ribbon movement focuses only on the ‘survivors in pink’ mentality and is not addressing issues of scientific and medical concern. And she points out that the pink ribbon culture - “the united front of survivors who are draped in pink, enthusiastically supporting one another” - may raise awareness and money, but is inaccessible to many women diagnosed with breast cancer. “The widely distributed imagery of the 1.3 million participants in the annual Komen Race for the Cure…, donning smiling faces and pink paraphernalia, do not reflect the illness experiences of the 2.5 million women in the United States who are currently living with breast cancer”.
I particularly enjoyed the chapter outlining her discussions with women with breast cancer, discussing illness narratives and a range of other creative and artistic means of expressing their feelings about breast cancer. I felt I was listening to real women expressing their suffering, rather than watching lines of happy pink she-roes. [She-ro is the feminine form of hero.]
But don’t get me wrong. Sulik gives credit where credit is due and she is definitely in the front line of the fight against breast cancer. I think she wants more attention paid to the important medical and scientific matters, as well as the personal issues of those suffering, rather than the razzmatazz. This is an interesting book that I enjoyed reading and I will no longer feel guilty if I’m a bit cross when I see a pinkwasher advertisement featuring she-roes on my TV.
Springer Publishing Company, 2010
RRP $US45.00, £30.95
This book was a delight. An account of cutting-edge nursing and medical care from London, circa 1850, by somebody who needs no introduction. Florence Nightingale is nothing if not forthright and her description of both the nursing and social situation of the times is illuminating.
Given the time and place, her assessments of various medical and social problems seem accurate and some of them even apply today. Her attitude is uncompromising and does not allow for dissent. For example, the first rule of nursing is to keep the air within as pure as the air without – “if a nurse declines to do these kinds of things for her patient, I should say that nursing was not her calling”; on the essential points for the health of houses – “pure air, pure water, drainage, cleanliness, and light”; regarding noise – “patients [are] obliged to defend themselves against their nurses”’; about variety – “help the sick to vary their thoughts, to see out of the window”; food – “the patient had better not see more food than his own”; the uncleanliness of ordinary bedding – “feverishness is generally supposed to be a symptom of fever - in nine cases out of ten it is a symptom of bedding”; light – “is essential to both health and recovery”; and on family and visitors – “chattering hopes and advices are the bane of the sick”. There is a supplementary chapter on what it is to be a nurse.
This book should appeal to any nurse and to any students of medical history. Her descriptions of the conditions in hospitals, homes and schools are challenging - you can almost smell it. What happened 150+ years ago, before the advent of bacteriology and microbiology, is informative. The relationship to the person who is the patient, is reassuring.
Go on, treat yourself.
Roger Woodruff, MD (Australia)
Dr. Woodruff is a Lifetime Member of the IAHPC Board and Past Chair. His bio may be found here.
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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.