By Dr. Roger Woodruff
Betty Ferrell, Nessa Coyle, and Judith Paice (eds.)
Oxford University Press, 2015
RRP $US161.81 £91.00
It’s big and impressive. 1,200+ pages. 146 contributors.
The first section is about the principles of palliative care. I don’t have any argument with what is written, but I do have questions about how many patients receive effective palliative care. I note the anecdotes outlining the benefits of palliative care describe patients referred many months before death; if only that were the norm. This week’s editorial in the Medical Journal of Australia (Philip and Collins, Med J Aust 2015; 203: 385) notes that many cancer patients ‘are referred in the final hospital admission, during which they die.’ You may achieve better symptom control, but it is hard to do good palliative care in that time frame. ‘Our society determinedly avoids discourse around dying, focusing instead on “staying positive” and “fighting hard”…’ And the media reinforces this view. I recently had cause to try and arrange some palliative care involvement for a close relative being treated at a cancer center in the USA. It was very challenging ¬– I knew they had a palliative care service, but it was as though their webmaster was conspiring to prevent me finding out about it. But I am not picking on the USA – the same applies to institutions in Europe and Australia. This, and similar books, should have a chapter describing the personal, societal, professional and institutional barriers that prevent patients who would benefit from palliative care being referred at an appropriate time, and outlining what we can or might be able to do, individually and collectively, to remedy the situation.
Section II is about the management of pain and physical symptoms. The coverage is reasonable, but I was surprised that only one of the 28 chapters was written by someone from outside North America. This denies the reader exposure to the ideas and experience of expert palliative care nurses from around the world.
Section III is about psychosocial support and includes chapters on hope, bereavement, family care, spirituality and meaning.
Section IV is about special patient populations. I agree that palliative care for HIV/AIDS and geriatric patients deserve separate mention. The other populations discussed (minorities, homeless, mentally ill, substance abuse, and those involved in mass casualty events, war veterans, etc) do warrant mention in a book like this but, as discussed above, I am more concerned about our lack of ability to provide good, timely palliative care to the much larger numbers of mainstream, ‘ordinary’ patients.
Section V is about palliative care in different settings (including home care, hospice, Intensive Care Unit, and the Emergency Department) and provides insights into the different modes of palliative care.
Section VI contains seven chapters about pediatric palliative care. If you work in pediatric palliative care, I don’t know whether this will add anything to what you get from The Oxford Textbook of Palliative Care for Children 2e.
Section VII on Special Issues seemed a bit mixed up. There are some important chapters on occupational stress, ethical considerations, assisted dying and ‘A Good Death’, mixed in with 11 chapters about what is happening with palliative care elsewhere in the world. These chapters are non-clinical and are mostly about policies, administration, and education. The chapter on Europe provides much information, but seems to completely sidestep the issues related to physician–assisted death in the Low Countries. The chapter on Assistance in Dying does not discuss euthanasia without request or consent in The Netherlands, or whether the recent surge in terminal sedation is a means of performing euthanasia without having to get second opinions and fill out forms. It quotes a cross-sectional Dutch study, implying the total number of physician–assisted deaths was 496 in 2011, when the actual number was 4,071. But I was interested to see that, now that physician-assisted death is legal, Dutch nurses have started doing it as well. But this is probably just more charges of murder that will be ignored by the Dutch courts, another step (or should that be slide?) down their slippery slope.
Material from this book has been used as the basis for the HPNA Palliative Nursing Manuals, the handbooks produced by HPNA and Oxford University Press. Now that I have seen the Textbook, I would have to say that if you want a broad discussion of a particular topic, the Textbook is better. But if you want clinical fast facts, the handbooks are much better.
As with previous editions, this book celebrates and emphasizes the nursing role in all things to do with palliative care and should be available wherever palliative care nurses work.
Translated by Mark Kyburz and John Peck
Columbia University Press, 2015
RRP $US38.00 £25.13
Review copy supplied by Footprint Books.
Monika Renz is a psychotherapist, music therapist, theologian and spiritual caregiver, with doctorates in both psychology and theology, who has been the head of psycho-oncology at the Kantonsspital St. Gallen in Switzerland since 1998.
Whilst most books dealing with palliative care cover a significant portion of the illness trajectory, Renz has taken a magnifying glass to the spiritual and psychological happenings in the last minutes or hours (days, at most), of patients’ lives. She studied more than 600 patients dying of cancer, recording what happened (or did not happen) after each therapy intervention or encounter, including things both verbal and nonverbal. Analysis of this data is the underpinning of her hypothesis that the dying undergo transition into another state of consciousness, or another way of experiencing being, beyond anxiety, ego and pain. I am not going to attempt to summarize her description of the nature and meaning of these transition processes. But it results in her recommendations about how we might provide better end-of-life care.
I found this book pretty intense, but very interesting. I frequently had to reread a paragraph to understand the real meaning, but I have to say that what Renz (and her translators) say is perfectly clear; perhaps it is that I am not used to thinking in terms of Jungian psychology at the bedside. I was impressed by the similarities to some of the topics discussed by Patricia Pearson in Opening Heaven’s Door, particularly regarding nearing death awareness and pre-mortem serenity, although they are discussed here from a psychological, almost psycho-analytic, perspective. Many of the things she describes ring true, and perhaps this is a better way to describe and treat our dying patients. I would recommend this to anyone who works in palliative care and has an interest in the spiritual and psychological processes in dying patients, or anyone who simply wants to know more.
Holland, Golant, Greenberg, Hughes, Levenson, Loscalzo and Pirl (eds)
Oxford University Press, 2015
RRP $US49.95 £31.34
This is a second edition of the first of the American Psychosocial Oncology Society (APOS) Clinical Reference Handbooks on Psycho-Oncology. Inclusion of psychosocial problems has always been important to those who have tried to practice holistic care and in her introduction, Jimmie Holland notes that two recent reports have added fuel to the cause – the Institute of Medicine (IOM) declaration that ‘quality cancer care must integrate the psychosocial domain into routine care’ and the College of Surgeons’ accreditation standard requiring cancer centers have an on-site program to identify and treat psychologically-distressed patients and family members.
The opening chapter of this book is about such screening, with the relevant screening tools provided. This is followed by chapters summarizing pharmacological and non-pharmacological interventions. The second section covers psychiatric disorders – emergencies, anxiety, mood disorders, cognitive impairment, substance abuse, and personality disorders. My criticism here, similar to what I said about the big textbook (Psycho-Oncology 3e), is that there should be a separate chapter about normal, transient human reactions to death and dying; but American psychiatry seems to be going through a phase of over-diagnosis and over-pathologization. The third section is about physical symptom management – fatigue, pain, nausea and vomiting, and sexual dysfunction. The next is about communication – about giving bad news, helping patients deal with the problems of being a parent, and spiritual and religious issues. The final section deals with psychosocial issues related to certain common cancers.
Overall, this book meets its goal – a pocket-sized reference to psychosocial problems in cancer care. It is full of tables and lists, which ensure the information is accessible. It provides a sound basis for assessing and treating the more obvious or severe psychological problems. I think this book would be useful to anyone who works in oncology and palliative care, although I longed for a discussion about normal responses to death and dying.
Toward a New Ethical Framework for the Art of Dying Well
Lydia Dugdale (ed.)
MIT Press, 2015
RRP $US29.00 £19.95
Review copy supplied by Footprint Books.
The Ars moriendi (‘The art of dying’) appeared in about 1460 after the Black Death (c.1340-1400) of bubonic plague had killed between one- and two-thirds of the population of Europe, and provided the layperson with guidance about the preparation for death according to the customs of the Church at that time. This book, with contributions from physicians, philosophers, theologians and bioethicists, asks what would be needed to create a contemporary Ars moriendi, or ‘art of dying well’, in a society like the USA as it exists today.
Big questions are tackled. Re-categorizing death from unmentionable to mentionable, even anticipated. Human finitude. What does and does not constitute a ‘good death’. Do hospice and palliative care provide an answer? The second part of the book deals with the substance of dying well – rituals and practices, spiritual preparation, and the role of community. The final section is about children, the elderly and demented, and people with HIV/AIDS.
I enjoyed this book, which I found informative, thoughtful and stimulating, but it wasn’t light reading. Bioethicists will lap it up, but it also asks questions that are relevant to the practice of palliative care on the ground today, such as what is meant by dying well, and how hospice and palliative care should be aiming to try and achieve that.
Nutritional, Dermatologic, Neurologic, and Other Symptoms
(HPNA Palliative Nursing Manuals. Vol. 3)
Judith Paice (ed.)
Oxford University Press, 2015
RRP $US29.95 £19.99
This is the third volume of the OUP/HPNA Palliative Nursing Manuals, the second to deal with symptom control. The opening chapter is on Fatigue, followed by Anorexia and Cachexia, and Artificial Nutrition and Hydration, followed in turn by chapters on Urinary Disorders and Lymphedema. There are two chapters on important skin problems: Pressure Ulcers and Malignant Wounds, Fistulas and Stomas. Chapter 8 is about Pruritus, Fevers and Sweats, followed by three chapters on Neurologic Disorders, Anxiety and Depression, and Insomnia.
As with the previous volumes, I was impressed with the frequent use of lists and tables, which I feel makes the practical information more readily available. The content is again drawn from the Oxford Textbook of Palliative Nursing 4e, which I have now seen but not studied. My feeling is that a nurse who knows their way around palliative care, but wants some extra advice on a particular point, the Manuals are probably better. For someone who wants a broader (more academic) picture, the Textbook may be better.
Whatever, this is an affordable, pocket-sized manual that is full of accessible information.
(HPNA Palliative Nursing Manuals. Vol. 4)
Betty Ferrell (ed.)
Oxford University Press, 2015
RRP $US29.95 £19.99
This is the fourth volume in the OUP/HPNA Palliative Nursing Manuals.
Pediatric palliative care is to me a daunting subject. Not only do they have to cope with a terminal or life-threatening disease, but they do it over a wide range of physical, psychological, cognitive and social conditions.
This book provides an overview of pediatric hospice and palliative care, followed by chapters on symptom control and pain. Possibly more important in the pediatric setting, there are chapters on palliative care in the neonatal Intensive Care Unit, transitioning of the goals of care toward palliation, and management of the grief and bereavement that invariably follow.
As someone with no experience in pediatric palliative care, I find this volume difficult to judge. There seems to be a lot of information, with plenty of lists and tables, which I think a nurse practicing in palliative care would find useful. For a broader, academic picture they should refer to The Oxford Textbook of Palliative Nursing 4e from which the text of this book is drawn or, better still, The Oxford Textbook of Palliative Care for Children 2e.
Lessons for Living at the End of Life
Rowman and Littlefield, 2013
RRP $US22.95 £15.95
The cover tells me Eric Lindner is an attorney and entrepreneur who became a hospice volunteer or ‘companion caregiver’ in 2009.
This is his recollection of his dealings with seven hospice patients and their families on a background of his own elderly parents pushing towards needing palliative care. The patients are more alive than usual in this type of account because you are told their name and shown their picture and you hear their voices. His ruminations about their problems and his own reactions to them are both insightful and interesting. The last chapter is about how, armed with his experience of terminal illness, he and his wife deal with their daughter’s suspected thyroid cancer.
Whilst pleased if he is helping the terminally ill, Lindner is unrepentant about what he feels the patients have given him – ‘they are the most fascinating people I’ve ever met.’ This book may be of interest to anybody who works in palliative care, and of particular value to those who coordinate our volunteers and to the volunteers (and trainee volunteers) themselves.
At the beginning of the book is a quotation that I had not seen before but thought was very pertinent to palliative care:
Shared joy is a double joy;
Shared sorrow is half a sorrow.
Roger Woodruff, MD (Australia)
Dr. Woodruff is a Lifetime Member of the IAHPC Board and Past Chair. His bio may be found here.
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, and which have an ISBN, will be reviewed. Due to the large number of requests, we can’t provide exact dates of when books will be reviewed.