2018; Volume 19, No 10, October

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

Whilst this is certainly the most important palliative care book that crossed my desk in the last month, it is also the most disturbing.

After an introductory chapter, there is discussion of conceptual, legal, and ethical considerations in PAD. A number of important issues are addressed, including the difficulty in determining that a patient’s life expectancy is less than six months, how best to assess capacity and competence (in distinct contrast to what happens now), the contradiction between the proponents who demand PAD in the interests of all the patients with unrelievable pain and physical symptoms and the Oregon patients who pursue it because of existential and not physical reasons, and the concern that no safeguards enacted or proposed to date will be able to stop some people’s lives from ending without their consent through mistakes, coercion, or abuse.

Kim Callinan, CEO of the pro-euthanasia organization Compassion and Choices, waved the civil liberties/human rights card and I felt there was a little indignity that anyone might not agree with her; she chided those who sought to make the request process any more onerous. She provides no useful discussion about why opinion polls show that the majority of people are in favour of legalization of euthanasia, but (in Oregon) only a tiny, tiny fraction request PAD for themselves. She doesn’t mention that only a fraction of the physicians who support legalization say they might be willing to participate in doing it. Lastly, she trots out the prevention of suicide business, and ignores the evidence from Oregon and the Netherlands that the rates of non-assisted suicide have gone up since the legalization of assisted suicide. I cheered when one participant questioned whether it was appropriate for an advocacy group to attend a scientific meeting.

The next chapter is mainly about PAD in Oregon. Linda Ganzini provides an overview of what has happened over the last 20 years, but I thought she dodged some important issues, depression in particular. There are concerns that significant numbers of patients with potentially treatable depression are getting PAD, but she maintains the incidence of depression is very low based on her study in which social workers (not physicians, never mind psychiatrists) were asked to give a gut-feeling score for depression on a scale of 1 to 5, without bothering to use any of the clinically validated instruments for the diagnosis of depression.

The scientific discussions were again suspended, this time for someone else from Compassion and Choices, to emotionally relate the unfortunate tale of his 29-year-old wife who was diagnosed with glioblastoma multiforme, which led to them moving to Oregon and her dying by assisted suicide. He decries the use of the term ‘suicide,’ which he says is insulting. And I note that he says all PAD deaths are ‘gentle, peaceful,’ whilst all non-PAD deaths are ‘struggling and in pain.’ Perhaps he doesn’t know that the Dutch reported that 18% of attempted assisted suicides had to be ‘finished off’ with euthanasia by injection. Perhaps he hadn’t heard about what happened with the seven patients in Oregon who regained consciousness after taking a lethal dose of medication, never mind the poor fellow who woke up after three days and lived for another three months.

Chapter 4 is about PAD elsewhere in the world, mainly in the Netherlands. Bregje Onwuteaka-Philipsen spins the party line that the numbers are low and haven’t changed much and it’s all under perfect control. But between 1990 and 2015, deaths from euthanasia, physician-assisted suicide, and termination of life without explicit request have increased from 2.7 to 4.9% of all deaths; between 2001 and 2015, the use of continuous sedation until death jumped from 5.6 to 18.3% of all deaths; and since 1990, there have been in the order of 18,000 cases of termination of life without request and they are still going strong, with more than 400 cases each year. She avoids talking specifically about all the cases in which intensified treatment of pain and symptoms, withholding or withdrawal of therapy, or continuous sedation until death were performed with the explicit intention of hastening death.

A presentation by an anthropologist who studied euthanasia in the Netherlands paints a glowing picture of the time taken and devotion shown by Dutch physicians when it comes to euthanasia: ‘Euthanasia in the Netherlands involves discussions taking place over weeks, months, and sometimes years and does not largely focus on the final day itself.’ But a Dutch report I read stated: ‘The period of time between the first discussion [of euthanasia] and the actual administration varied from less than a day to…’ i.e., same-day service.

Chapter 5 discusses implementation and practice of PAD, and includes interesting discussions of the societal, institutional, professional, and personal responses to PAD. The one on which I choked was from ‘a recognized expert in palliative care, bioethics, and health care communication skills,’ who said that palliative care teams can be fully participatory in programs of PAD. This is the model promoted by the Belgians, in which euthanasia is seen as an integral and necessary part of palliative care. I have great trouble comprehending this approach and believe what they are calling palliative care and what I call palliative care are different things. Over the years, I have repeatedly been impressed when one or other members of the palliative care team has made that extra effort, gone the extra mile, to deal with a patient’s suffering. But that will never happen if it is likely (or possible) that the patient will have euthanasia in a week’s time.

Chapter 6 discusses physician-assisted death in the context of other long-term support systems available to patients, and the last chapter highlights some of the ideas and questions put forward.

This book has a lot of good material, in addition to the twaddle I have picked on. But what disturbed me most was that it seemed to be about ‘how to do it’ (access, voluntariness, competence, etc.) rather than ‘should we do it?’ What happened to intelligent debate about the limits of autonomy?

Get it and read it! It’s free.

(Roger Woodruff, September 2018)

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Other Reviews

This book explores how, in encounters with the terminally ill and dying, there is something existentially at stake for the professional (as well as for the patient). It’s about the relationship, or lack thereof, between the personal and the professional in us. The real substance of this book (for me, anyway) is the four detailed interviews with health care professionals working in intensive and palliative care, and Moen’s detailed analysis of them. ‘Moen discusses how the inner and outer worlds, the psychic and the social, and the existential and the cultural, [are all involved in] the professionals’ experience of work at the boundary between life and death.’

I related best to the chapter listing and summarizing the existential issues involved with working in palliative care. Do professionals get a second-hand fear of death from dealing with the dying, and if so, how should it be managed? Do we have trouble dealing with people away from our work because of the work we do? Are there problems related to personal authenticity? Is there some subtle guilt associated with the fact that our patients die?

This is an academic thesis rewritten to be reader-friendly, but it is still no light read. If you work in palliative care and have an interest in what effect the work has on us, then you will be made to think by what’s written here.

Kjetil Moen is a theologian with a degree in history, religion, and cultural anthropology. He is Associate Professor in the Faculty of Health Sciences at the University of Stavanger in Norway, and also works as chaplain at the University Hospital of Stavanger.

(Roger Woodruff, August 2018)

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This pocket-sized handbook provides a good basic guide to palliative care, with an unapologetic emphasis toward those patients with dementia. The authors point out the difficulties in prognosticating for patients with dementia, and quote a study in which only 1% of a group of people with advanced dementia were thought to have a life expectancy of six months or less, although 77% died within this time. Added to this is the difficulty recognizing the onset of the dying process in patients with dementia, which may expose them to unnecessary or inappropriate therapies. And as the population ages, palliative care services are likely to see more patients for whom dementia is a significant comorbidity.

The first half of the book is a review of symptom control by system (with dementia the first cab off the rank!). The coverage seems good and the information well set out and accessible — most of it in bulleted lists. The second half is a pharmacopoeia of the drugs used commonly in palliative care.

Although written for Australia and New Zealand, the vast majority of information in this book is applicable anywhere else in the world. I think it might be useful for junior medical staff and nurses working in palliative care. Its size and cost make it attractive.

Rod MacLeod is Professor in Palliative Care at HammondCare’s Greenwich Hospital in Sydney. Stephen Macfarlane is a psychiatrist who is Head of Clinical Services at HammondCare’s Dementia Centre in Melbourne. HammondCare is an independent (non-denominational) Christian charity that provides services to people with complex health or aged care needs. HammondCare Media is its not-for-profit publishing arm.

(Roger Woodruff, September 2018)

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I doubt that anybody working in palliative would argue that providing spiritual care is not an important part of person-centered holistic care. This book examines spiritual care in the allied health professions, or how professionals in a variety of allied health occupations can address the spiritual needs of the patients under their care.

The Introduction is written by Bruce Rumbold, who (I seem to remember) helped me appreciate the breadth of spirituality and spiritual care — that it’s not just about religion — many years ago. He provides a succinct summary of what spiritual care encompasses, with special reference to the allied health professions and how they can contribute to dealing with the patient’s spiritual needs. This is followed by a string of chapters, written by allied health professionals themselves, covering art therapy, audiology, chaplaincy, ergonomics, music therapy, occupational therapy, paramedicine, prosthetics and orthotics, social work, and speech-language pathology.

This book has a wider scope than just palliative care, but I don’t think that changes the messages to the various allied health professionals; I thought a spot on the Unit’s bookshelf would be appropriate. If you work in pastoral care within palliative care, then this book is obviously much more important to you. And for the others, the doctors and nurses? If you have a particular interest in spirituality and spiritual care, this book will be of interest to you.

The contributors are principally from Australia and North America, with one each from South Africa and Scotland.

(Roger Woodruff, September 2018)

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I approached this book with some apprehension for two reasons. First, I know nothing about massage and aromatherapy and, second, because when I last reviewed the field I remember being impressed by the lack of scientific rigor.

Scott Johnson is a doctor of naturopathy, an accredited alternative medical practitioner, with certification in essential oils therapy and aromatherapy. He has published a dozen or so books on essential oils and related subjects. His interest in the field grew from seeking better ways to treat his own ankylosing spondylitis.

I was impressed by the clinical background in this book. It is about human beings — be they patients or loved ones — who are dying. No euphemisms, real death. And the last page is a layman’s guide to the clinical signs of dying and death.

I was told to be suspicious of oils offered at prices significantly below the usual market price; whenever possible to buy from a company that provides access to its quality testing for each batch; and to only buy oils that list both the common name and the botanical species. I was definitely on a learning curve.

There are separate sections for physical, emotional, and spiritual problems. The discussion of physical challenges includes the management of pain, oropharyngeal problems, terminal secretions, nausea and vomiting, constipation, and a number of others. There are good descriptions of simple hand and foot massage techniques, as well as links to videos on the Internet. I was impressed by the references to a number of controlled trials, some randomized. For example, they showed the benefit of massage with Roman chamomile for control of physical and psychological symptoms in the palliative care setting; the benefit of abdominal massage with rosemary, lemon, and peppermint essential oils for constipation; and the benefits of black pepper essential oil inhalations in elderly patients with swallowing dysfunction.

Whilst much is made of the chemical effect of the applied or inhaled oil, I thought the benefits of the physical contact involved in such therapy, for both patient and carer, were underplayed.

The book is appropriately written for a lay carer, but will be of interest and use to anyone who works in palliative care and looks favourably on massage and aromatherapy, or wants to learn a bit about it.

(Roger Woodruff, September 2018)

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A whole book about hope! The definitions of hope, how it is measured, how to promote it, and the good things (positive functioning and well-being, to mention just two) that it can do for you.

I was drawn to this book because of the age-old discussion of hope in the context of terminal illness. ‘You must never take away hope,’ I was told; but I was never comfortable using less truth-telling in order to sustain hope. So it was with much interest that I jumped into the chapter on ‘Hope in the Midst of Terminal Illness.’

I found a clear discussion, together with recommendations as to how to do it better. The big issue is the transition from aggressive, cure-seeking treatments that increase the patient’s suffering with very little chance of benefit. They emphasize that it is not just about whether or not to accept hospice and palliative care, although that did seem to crop up frequently in their discussion; it’s about reframing the whole holistic treatment package. After I was taken through a discussion of high-hope and low-hope individuals, I was introduced to the process of ‘regoaling.’ Patients are happier and healthier if they are working toward (i.e., hoping for) meaningful goals. So, gently and not suddenly, new goals that are both achievable and meaningful are developed. They provide a list of barriers to regoaling and how one might avoid or overcome them. I was impressed and wondered whether more of this type of management and communication might not reduce the requests for euthanasia and physician-assisted suicide.

There are several other chapters that may be of interest to people who work in palliative care, including: promoting hope in older adults; hope and physical disease; hope and well-being; as well as separate discussions of hope, depression, and anxiety.

If you work in palliative care and you are interested in optimizing patient treatment and communication, and especially if your job involves teaching, you may find this book helpful. And I would make the chapter reviewed above compulsory reading for anyone who works in oncology.

There is a dark shadow hanging over this book. Shane Lopez, a world leader on the psychology of hope, died a year or so before this volume was completed, at age 46. Nothing specific is said in the obituary at the beginning of the book, but his eulogy printed online describes utterly debilitating depression.

(Roger Woodruff, August 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 and are not returned to the author. 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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