2018; Volume 19, No 12, December

IAHPC Book Reviews

By Dr. Roger Woodruff, IAHPC Reviews Editor

Note for authors and publishers

If you wish to have your book reviewed, please send it to:

Dr. Roger Woodruff

IAHPC Bookshop Editor

210 Burgundy St, Suite 9

Heidelberg, Victoria 3084

Australia

Palliative Care Book of the Month

In her foreword, Betty Ferrell reminds us what this book and palliative care are meant to be all about — in the words of Dame Cicely, ‘Your patients need your compassion but they also need your competence.’

The book is in four sections: Understanding palliative care, Caring for the whole person and his or her family, Physical health – life-threatening diseases, and Physical health – symptom control.

Section I describes the various aspects of palliative care nursing with an emphasis on interprofessional collaboration; there are chapters on ethics and advanced care planning. Section II deals with communication and the cultural, spiritual, and social domains of care, including grief and bereavement. Section III has chapters on cancer, neurological disorders, HIV/AIDS, and end-stage cardiac, pulmonary, renal, and liver disease. These chapters cover large tracts of clinical practice, but seem to provide a good groundwork of both the conditions and the palliative care aspects involved in their care. The last section is about symptom control with chapters on pain, dyspnea, gastrointestinal symptoms, fatigue, and a number of psychiatric conditions. The final chapter is about peri-death nursing care, which deals with some important issues. But whilst we need to be able to talk to families about autopsies if need be, I could not share the authors’ enthusiasm for a 16-point list presenting the benefits of autopsies.

The section on assisted dying was a bit disappointing. There was the usual discussion about which euphemism for assisted suicide seems nicest. Then came the old chestnut that legalized assisted dying prevented ‘impulsive, irrational and often violent’ suicides. Good try, but during the period 1998-2012 (during which time the Oregon DWDA was operational), the non-assisted suicide rate increased from under 14 to 17.7 per 100,000; and before you ask, the same thing happened in the Netherlands. The idea that assisted dying might be OK for someone who is determined, despite receiving skilled palliative care, is floated; but the fact that 85% of Canadians do not have access to quality palliative care, full stop, is not mentioned.

I also had difficulty with the chapter on HIV/AIDS. The message here is that in countries like the USA, HIV is a chronic and manageable condition, and it is in resource-poor countries that people are continuing to die from AIDS. This chapter would make more sense if it were divided into a section on palliative care involvement with the chronic patients (where they have a lot to offer), with a second one on the management of patients with advanced disease and the imminently dying. The cdc.gov website says there are 1.1 million people living with HIV in the USA, 48% in continuous HIV care. Does that mean 52% receive only intermittent HIV care or none at all? There were 15,500 AIDS deaths in the USA in 2015, underlining the need for palliative care for patients with terminal disease, even in the USA.

The general organization of the book is good. Each chapter starts with a list of key points and concludes with an in-depth review of a particular journal article under the heading ‘Evidence-Based Practice.’ Along the way, there are case studies and there is reasonable use of bullet-point lists and tables. I also liked the fact that various screening and assessment tools and clinical scales were actually shown and not simply referred to. The contributors are all from North America, except for three Australians.

So, where does that leave this book? It’s big and will help your muscle tone. It is also available as an ebook, and if you buy the print edition you acquire online access to the text. In a textbook that covers large areas of clinical care, I am always going to find things to quibble about but, overall, I think this is a good and comprehensive review of palliative care nursing.

Roger Woodruff, November 2018

Other Reviews

This is a new edition of the textbook formerly edited by Sheila Payne et al. Whilst I accept her description of the book as ‘inspired by a vision to improve palliative care nursing,’ I was a little unsure for whom it was written. There were bits that looked suitable for a nurse coming into palliative care, complete with lists of learning outcomes and learning exercises; but other pieces delved into matters of the philosophy, research, and continuing evolution of palliative care that I thought might not mean much to a newcomer.

It is divided into four sections: Who is the palliative care patient?, Providing palliative care nursing, Caring around the time of death, and Challenging issues in palliative care nursing. Section I includes a description of the people referred to palliative care, how they should be assessed, how their care should be organized, as well as the measurement of outcomes. Section II includes discussions on communication and the management of physical, psychological, spiritual, and social aspects of care. I liked the chapter about the different levels of palliative care nursing. Section III is about nursing care of the dying, and the grief and bereavement of the survivors; there is a good discussion of ‘the costs and rewards of caring in palliative care.’

I found some of the material in Section IV to be a bit challenging and less about hands-on care. However, the chapter presenting a global overview of assisted dying certainly caught my eye. There is a reasonable, if benign, description of what is happening in the various jurisdictions around the world. But there is no mention of the abuses (such as termination of life without request) that lead some of us to abhor the practice; and, for that matter, there is nothing about the sacred belief that nothing can override autonomy. These are vitally important for the palliative care nurse as they will shape his or her own opinion and help them when a patient or a relative slips in a question about assisted dying.

The contributors are mainly from the United Kingdom, with just a few from Canada, Uganda, and the Antipodes.

A good review of palliative care nursing, with a British flavor.

Roger Woodruff, November 2018

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Here are three one-hour DVDs combining beautiful images with the slower tempo of music from Room 217 CDs. The first includes music from the Classic Comfort CD, with its widely known classical compositions; the second is from the Gentle Waters CD; and the third is from the Peaceful Presence CD, both of which have time-honored and well-known tunes.

I thought the photography was stunning.

They are designed to be enjoyable and comforting, promoting reminiscence and review, storytelling and conversations. They do!

Whether you buy them for your hospice or recommend them to suitable patients, I think they are very worthwhile. You can even consider buying a set for yourself, to use in your reflective moments.

Roger Woodruff, October 2018

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After an introduction to neuropalliative care (palliative care basics for neurologists), the book is divided into three sections. The first considers various neurological conditions, with chapters on severe acute brain injury, disorders of consciousness, Parkinson’s disease, dementia, MS, ALS and other neuromuscular disorders, and brain tumors. The emphasis is on the palliative aspects of the management of these conditions, including end-of-life care. The second part is about improving communication and treatment decisions, with chapters on communication, prognostication, medical decisions, and assisted dying. The last section is titled ‘Crosscutting issues in palliative care,’ with chapters about end-of-life care, the management of pain, spiritual care, clinician self-care, and caregiver support.

The chapter on requests to hasten death, written by a neurologist, Dr. Neal Weisbrod, and Dr. Timothy Quill, a palliative care physician and longtime activist for physician-assisted dying, caused me some grief. Not surprisingly, autonomy is the shining reason to endorse assisted dying, and you can give yourself a little pat for non-abandonment and for mercy to make you feel even better; whether there should be any limitation on autonomy for societal reasons is not discussed. Much is made of the safeguard built into the Oregon law that assisted suicide only occurs when it is self-administered. Says who? There is no information in about 50% of the Oregon cases as to whether the medication was self-administered. They use outdated figures about complications in Oregon; the man who took 104 hours to die and the seven who regained consciousness aren’t mentioned. I wonder what it tells us that none of those who woke up made another attempt at assisted suicide. Their assertion that the patients (about 18,000 deaths between 1990 and 2015) who underwent termination of life without request in the Netherlands were incapacitated is not true; the Dutch themselves reported between 21% and 37% were competent. My advice would be to skip this chapter.

But let me get back to neuropalliative care. This is the second book on the subject to cross my desk, and again the great majority of the contributors are from the USA. If you work primarily in palliative care, but see more than a few patients with neurological disease, this book will be helpful as it will provide insights into the neurological aspects of your patient’s condition. If you work or are training in neurology, this is an important book that will provide you with a better understanding of the palliative and end-of-life care that your patients deserve. (But don’t take too much notice of the chapter on assisted suicide.)

Roger Woodruff, November 2018

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This book is written for metaphor scholars, corpus linguists, and health care researchers and practitioners; I clung to the third group.

I learned that corpus linguistics is the study of language based on large collections of ‘real life’ language use that are stored in corpora — computerized databases created for linguistic research; it may also be referred to as corpus-based studies.

The idea is that by exploring the metaphors used by patients, family caregivers, and health care professionals in the context of cancer and the end of life, it should be possible to increase the professionals’ awareness of their own and others’ use of language, leading to more sensitive and effective communication strategies with patients and their families. The studies reported here were performed in the UK.

Sticking to the clinically relevant results, they grouped the metaphors into 10 different domains from Animals to Wholeness. The most frequently occurring were Violence and Journey metaphors; the former have been termed ‘fight,’ ‘battle,’ ‘war,’ or ‘military.’ The main part of the book is about interpreting the messages relayed by the use of metaphorical language. They also report three important topic areas that are often expressed metaphorically: the relationship between patients and health care professionals, the notions of a ‘good’ or a ‘bad’ death, and the emotions of bereaved family carers.

I have to acknowledge that the authors have made an effort to separate the results and discussions for each of the three target audiences, and it was relatively easy to find what I call the clinically meaningful stuff that, in turn, prevented me having to use a drowning metaphor. If you have an interest in improving clinical communication in oncology or palliative care, this book will give you a lot to think about.

Roger Woodruff, November 2018

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The first chapter opens with a description of the first evening where the author’s invitation suggested, ‘Let’s have dinner and talk about death.’ The host is cooking up a visual and aromatic feast and there is a colorful description of the atmosphere and conviviality. Then, as they sit down before the hot meal, the host asks each of the eight guests to tell a story about someone they loved who had died and in what way the departed person had an impact on the guest’s life. Each story concluded with the lighting of a candle and a toast to the honor of the departed person. It is not recorded how long this took, but the food would have been stone cold and I would probably have had too much alcohol.

At the outset I have to say that whilst I might do it with my immediate family, the idea of having dinner with ‘strangers, friends, and coworkers’ for the purpose of discussing death and dying felt quite foreign to me.

The remainder of the two opening chapters discuss the whole issue of talking about dying and its potential benefits: why we should talk about it, and why we don’t. The rest of the book is made up of chapters focused on 22 ‘prompts’ — questions to start a conversation (or your own thoughts). For example: If you had only 30 days left to live, how would you spend them? What does a good death look like? If you were to design your own funeral or memorial, what would it look like? Some, like How long should we grieve? I felt were a bit stupid — as if grief is something you can switch off after a given number of days or months.

I was inevitably drawn to the chapter Would you ever consider doctor-assisted suicide? I was swept into the breathtaking story of the amazing Brittany Maynard, the young woman who tragically was diagnosed with glioblastoma multiforme and moved to Oregon ‘in order to use Oregon’s right-to-die law.’ Wow! A right? I hadn’t realized there was a law that compelled doctors to kill patients on request. Her husband, Dan Diaz, is not mentioned by name but I noted in a recent review that he is a member of the Latino Leadership Council of Compassion and Choices and was quoted as saying that all PAD deaths are ‘gentle, peaceful,’ whilst all non-PAD deaths are ‘struggling and in pain.’ Then Hebb changes key and in an even tone declares he is a fence-sitter where PAD is concerned and presents some of Ira Byock’s comments on PAD. I remained uncertain where Hebb stood or sat, but the enthusiasm in the first part of the chapter led me to think he was more pro-PAD.

This book will work for some people, and I completely agree with the need for more communication about these matters. Hebb warns in the introductory chapter that, ‘This book will piss you off,’ meaning most people will find at least one topic that upsets them. I wondered if I had an above-average score.

Michael Hebb is the founder of Death Over Dinner and Convivium, a creative agency that specializes in the ability to shift culture through the use of thoughtful food-and-discourse-based gatherings. Nowhere could I find any details regarding his professional background.

Roger Woodruff, November 2018

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Roger Woodruff, MD (Australia)
Dr. Woodruff is a Lifetime Member of the IAHPC Board and Past Chair. His bio may be found here.

NB: Review copies become the property of IAHPC. Only books related to palliative care that have been approved and have an ISBN will be reviewed. Due to the large number of requests, we cannot provide exact dates of when books will be reviewed.

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