IAHPC book reviews

2013; Volume 14, No 3, March

IAHPC book reviews

by Dr. Roger Woodruff

Palliative Care Book of the Month


Assessing the Dutch Experience
Stuart J. Youngner and Gerrit K. Kimsma (Eds)

Cambridge University Press, 2012
403 pp
ISBN 978-1-107-00756-7
RRP $US99.00, £60.00

This is an important book for anyone with an interest in euthanasia and physician-assisted death (PAD). It is a collection of essays written by ‘the leading Dutch scholars and clinicians who shaped euthanasia policy and who have studied, evaluated, and helped regulate it’. So, this is the Dutch themselves telling us why they did it, how they did it, how they regulated it, and how good it is. Once I started reading it, I have to admit I had trouble putting it down.

The cast of contributors is interesting. Youngner is a psychiatrist from Cleveland, USA. Kimsma describes himself as a ‘practicing physician and philosopher’. Of the other 20, there are six doctors (two neonatologists, one epidemiologist, one ethicist, one psychiatrist and one public health specialist), plus three philosophers, three sociologists, two historians, two lawyers, two political scientists and two psychologists. Not your average crew from the medical coalface, I think they are what Cohen-Almagors (p.100) calls the ‘euthanasia elite’—the people who drive the agenda. I felt none of them would hesitate to tell me how I could be made a better person. People and organisations opposed to euthanasia because of the effect it might have on medicine, law or society are generally regarded as stupid, blind or hung-up on religion—which was one of the downsides of this book for me.

The book is divided into six sections: Background and History, Regulation and Practice Deficiencies, Quality Assurance, Learning from the Practice, the Challenge of Unbearable Suffering, and a concluding Overview.

But for all their talking and all the words here, I remain totally unconvinced that they have done a good thing or that they have got it right.

The unreported cases? Well, they decided there was too much emphasis on the physician’s intentions in the earlier studies and switched to the drugs used. They hide behind the observation that opioids, properly used, may not be life-threatening and so opioid-related deaths are not euthanasia, which brings the proportion of unreported cases down very nicely. My understanding is that the same opioid drugs, improperly used, are lethal.

The rise in palliative sedation? In 2005 it was reported that there had been a fall in the incidence of euthanasia and assisted suicide, but there was a compensatory rise in palliative sedation. Were the Dutch doctors trying to avoid all the legal strings attached to performing euthanasia? Well, ‘the 2005 study… was not designed to examine this [question]’, but suggests that it ‘reflects positive choices in favour of palliative sedation.’ Now, if I had two clinical options that resulted in the same outcome (the death of the patient, in this case) and one required hours of talking and paperwork and carried a remote risk of prosecution, and the other had none of the above…

Euthanasia without explicit request? ‘Observational studies on the characteristics of practice cannot be used to prove that physicians [who euthanase patients without explicit request] were right or wrong.’

The definition of unbearable suffering? This pillar of the Dutch movement is beset with subjectivity, but it is all settled if ‘[the doctor] grasps the public norm concerning unbearableness.’

Much is made of the wonderful Dutch system of general practitioners whom, it says, the patients trust with their lives and their deaths. We are reassured that a request for euthanasia changes the physician-patient relation to an even higher level and that this ‘connection’ allows objectivity in proceeding to euthanasia. This implies Dutch doctors never get tired, never feel anxious or depressed, are immune to all extraneous aggravations and always make calm and perfect judgements in their patients’ interests. Oh, but …‘it is certainly possible that some physicians practice PAD without the emotional sensitivity that we have agreed is necessary…’

Euthanasia is the best form of palliative care? That’s a bit close to the bone! ‘Excellent palliative care and physician-assisted death may go together, both in practice and principle.’

The author of the last chapter acknowledges that most of the heady ideals of the 1970s, when ‘the Dutch saw their country as a shining example for all the world to follow’, have collapsed or backfired. But she declares herself to feel smug about their euthanasia policy, ‘something we did really right.’
Did they? But it’s fascinating reading!

Other reviews

A Guide for Best Practice
Joanna De Souza and Annie Pettifer

Sage Publications, 2013
203 pp
ISBN 978-0-65702-5487
RRP £19.99, $US38.00
Review copy supplied by Footprint Books www.footprint.com.au

This book is about end of life nursing care. It is written for nursing undergraduates, but I think it (or something similar) is needed for medical and allied health undergraduates as well. The holistic breadth of the approach to these patients and their families is entirely appropriate. The book opens with a chapter on the historical perspectives of end-of-life care, with the appropriate acknowledgement of the role of Dame Cicely. The following chapters deal with the holistic approach, difficult ethical decisions, deciding to call the palliative care team, managing physical symptoms, discharging patients approaching the end of life, care of patients and their families after death, and how to deal with unexpected deaths. The last chapter deals with how one deals with one’s own feelings after a death, which obviously applies to more than just students of nursing. The case histories, reflective questions and the provision of summaries and further reading enhance the text. Straightforward and clear, it deserves to be used more widely than just for nursing undergraduates.

Exposure-Based Treatment of Chronic Pain
J.W.S. Vlaeyen, S.J. Morley, S.J. Linton, K. Boersma and J. de Jong

IASP, 2012
195 pp plus DVD
ISBN 978-0-931092-87-9
RRP $US75.00

This book is about how avoidance behaviour (or pain-related fear) affects chronic pain and the disability associated with it, and how it might be treated. Not working in the field of chronic pain and being a novice when it comes to the more complex psychological goings-on of cognitive behavioural therapy (CBT), I did not feel in a position to judge the treatment described. I think it’s a slightly different angle on treating selected patients with chronic pain and I’ll leave it to the specialists.

A Book for Young Children to Help Explain Death and Dying
Caroline Jay and Jenni Thomas

Jessica Kingsley Publishers, 2013
ISBN 978-1-84905-355-6
RRP $US15.95; £9.99
Review copy supplied by Footprint Books www.footprint.com.au

This book is designed to assist adults helping children (4+ years) deal with death and dying. Illustrated, it sets out some facts in a straightforward way, but also asks questions to help children express themselves by word or drawing, or to ask further questions. This would be a useful book to have tucked away on the shelf in the hospice, to be loaned out from time to time.

Something different

A Life Transformed by the Dearly Departing
Bronnie Ware
Hay House, 2011
244 pp
ISBN 978-1-4019-4065-2
RRP $US15.95; $AU20.99; £17.00

This is the story of a young Australian woman who, with no training in palliative care, works as a live-in companion and patient-carer for terminally ill people in their own homes. A blog gone viral that turned into a self-published book and finally this volume, it is marketed in the self-help genre, the author believing that the insights that she distilled from the terminally ill, and which helped avert her own suicide, will help others build a better life.

But if you work in palliative care, there is a lot more to this book. It boils down to a series of case histories (told as stories, intertwined with Bronnie’s own story), interpreted and assessed. For someone with no training in palliative care, her interaction with patients is praiseworthy—listening, letting the patient choose the topic, being truthful, respecting silences. This book provides a lay (but quite insightful) description of the psychosocial problems our patients deal with, as well as the great psychological burden that it can place on caregivers. My only real problem was that for a book that is essentially about death and dying, I found the frequent use of passing, passed on, taken from, departed, etc., a bit tedious. But…Well done, Bronnie!

Just to set the record straight, the description of Bronnie Ware as an “Australian palliative care nurse” by most of the international media outlets found by Google is incorrect. She worked in a bank for ten years.

And what are the top five regrets? Well, you’ll have to read it.

Roger Woodruff, MD (Australia)
February 2013
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 will be reviewed. Due to the large number of requests, we can't provide exact dates of when books will be reviewed.

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