2018; Volume 19, No 7, July

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 to:

Dr. Roger Woodruff
IAHPC Bookshop Editor
210 Burgundy St, Suite 9
Heidelberg, Victoria 3084
Australia

Palliative Care Book of the Month

I did not know what to expect when I picked up this book. The distilled wisdom of one nurse’s 30 years in oncology and palliative care? When I had trouble putting it down, I realized it was something special.

Death’s knocking starts in the Introduction. She describes her own experience of having a stillborn child and coming to terms with the loss, and then dealing with her father’s deterioration into dementia (and eventual death), which she feels led her to interact with her patients in a more individualized, personal, and compassionate way.

The book is divided into two sections: 1. Delivering Compassionate Care to Your Patients at the End of Life, and 2. Optimizing Your Own Self-Care and the Care You Give Your Patients. Each is a series of short, vivid clinical stories (most are only one or two pages), used to highlight how to deal with the problems patients and their families have to face and the problems they present to you, as well as recognizing your own problems. The stories that stuck in my memory were the ones in the chapter about caring for other nurses facing death. What I also liked was that, here and there, Dubetz admits to having gotten it wrong, but she learns from those mistakes. The second part is a little more focused on how you (the nurse) can best cope with dealing with a lot of death and dying. She offers a Self-Care Commitment Plan, and START — Five Tips to Calm Yourself, both of which are available at www.MeinaDubetz.com.

I liked this book because it was a no-holds-barred report, straight from the bedside trenches, of all the problems associated with death and dying in oncology and palliative care. That is combined with a lot of experienced advice about how to best deal with those problems and care for yourself at the same time. I think any palliative care nurse will enjoy reading this book, and will be better off for meditating on the problems illustrated by Dubetz. And, whilst it is written by a nurse for nurses, anyone who works in palliative care will identify with the problems described in this book and be better off for having read it.

(Roger Woodruff, June 2018)

Other Reviews

Robert Macauley is the Cambia Health Foundation Professor of Pediatric Palliative Care at Oregon Health and Science University.

The book is divided into five sections. The first is a general overview and introduction that includes a description of the evolution of the field of clinical ethics. The second is ‘Ethical Issues in Determining the Plan of Care,’ covering things like autonomy, advance care planning, surrogate decision-making, and code status. The next is about ‘Death and Dying,’ which takes up one-quarter of the book and which attracted most of my attention. The fourth is about ‘Pediatric Ethics and Palliative Care.’ The last is a collection of other topics, including palliative care for dementia and neurodegenerative disorders, organ donation, and the clinical practice of palliative care. Macauley refers to physician-assisted dying (PAD); I shall continue to call it what it is — physician-assisted suicide (PAS).

I got caught up in the section on death and dying. There were long (but accurate) discussions of most aspects of a range of issues, but I felt he avoided expressing his opinion. In the end, I felt he seemed to believe there were reasons for avoiding ‘active’ euthanasia, whilst appearing much more tolerant of PAS. As I have read elsewhere on numerous occasions, we are told that more than half the population of Oregon supported the Death With Dignity Act in November 1994. But according to the Oregon Secretary of State, only 1,254,265 people voted that day, indicating that the DWD Act was supported by only 34.9% of registered voters.

Although rich in theory, I couldn’t find much discussion about the known practical difficulties. What about the Dutch patients given lethal medication without explicit request — a thousand patients a year throughout the 1990s, a significant proportion of whom were competent; I think the 2015 figure was down to 500-odd, about 10 per week. What about the Dutch patients subjected to continuous deep sedation until death (26,400 in 2015, or 18% of all deaths), in 5% of which cases (some say more) it is performed with the specific intention of hastening death?

And it’s not just the Netherlands. Over 20 years, only 5% of candidates for PAS in Oregon have had a psychiatric assessment and there is evidence of patients with potentially treatable depression undergoing PAS. The lack of any oversight of the assessment process has been criticized, as in the cases where lethal prescriptions were issued for reasons of caregiver burden and so as not to disappoint the family. And the book lacks mention of any serious complications of the PAS procedure in Oregon (although I note that one person took 104 hours or 4.3 days to die)? The Dutch say nearly one in five attempts at PAS ends up with doctor-administered euthanasia. Anyone know the truth?

In the discussions, I found it curious that the patient subject was always described as ‘she,’ with her wishes and her rights. This is the same as in Sumner’s Assisted Death (Oxford University Press, 2014), where I thought it might be a subconscious appeal to the innate sentiment to protect, or at least not harm, the fairer sex, whilst selling a horrid message.

Some comparison with Palliative Care and Ethics (Oxford University Press, 2014), edited by Timothy E. Quill and Franklin G. Miller, is appropriate. I had trouble (and still do) with Quill’s denial of the possibility of a double effect when treating pain and symptoms, and Weyer’s discussion of euthanasia in Europe was so selective as to be a disgrace. Ethics in Palliative Care has the considerable advantage of being single-authored.

Overall, I thought this book was a remarkable effort and I know it will be a useful reference for anybody who works in palliative care. Even in the sections that I have criticized, I have to say that the discussions of the pros and cons of various issues (as far as they went) were set out in a calm and even manner.

(Roger Woodruff, June 2018)

In the Feature Article of the June newsletter, I wrote that all my undergraduate medical teaching was focused on the curative model. Death and dying were not mentioned, as they amounted to medical failure. The psychosocial aspects of malignant disease did not exist. It was only years later that the words ‘palliative care’ were heard (often in hushed tones, at first), and even longer before spirituality and the need for, and benefits of, spiritual care were acknowledged.

This book comprises the personal reflections on all things to do with spirituality, written by a dozen people experienced in the work of palliative care and hospice: a CEO, a Methodist minister/pastoral care worker, a palliative care physician, a physiotherapist, volunteers, hospice chaplains, nurses, and social workers. Each was asked to describe their thoughts about spirituality and spiritual care, illustrated with any professional or personal stories they wished to add.

The result is a wonderful collection of their thoughts reflecting both the spiritual journeys of people they have looked after, but also their own spiritual journeys. There is some interesting discussion about how spiritual care has evolved over the 50 years since Cicely Saunders included it in her concept of ‘total pain.’ One author reflects on the lack of a ‘shared language’ for spiritual care beyond the confines of organized religious practice, whilst another reminds us of Robert Twycross’s adage that spiritual care is anchored in the ordinary. The stories, both professional and personal, are very personal and spiritual issues surrounding the writer’s mother’s death come up in several chapters. And there’s the man whose mother waved to him from the platform opposite at the railway station in London, only a moment before the nurse from the hospice in Wales rang to tell him she had died.

I think anyone who works in palliative care will enjoy this book and benefit from reading it. That spiritual care is about looking after normal human beings, and that it is the ordinary things that matter, do not make it easier. This is not a textbook, but a wonderful collection of the thoughts of a group of people experienced in palliative care, on which you may reflect professionally and perhaps also personally.

Andrew Goodhead works as the Spiritual Care Lead for St. Christopher’s Hospice in London. Nigel Hartley works as the Chief Executive Officer for Earl Mountbatten Hospice, located on the Isle of Wight.

(Roger Woodruff, June 2018)

Every now and then a book comes along that makes you sit up and acknowledge that there is a whole other world going on out there. This is one.

It is about the death from ovarian cancer of Adamson’s partner, Jane. It sounded like the usual stuff: illness, death, bereavement. But not if it is viewed through the lens of German Idealism, which looks at the notion of life as a binary synthesis, or a return enhanced, as a way of coming to understand death. I noticed the letters in the words before me had become a bit blurred; I retreated to Google for some background illumination and found a University of Glasgow thesis on binary synthesis, or Goethe's esthetic intuition in literature and science. Binary synthesis, it told me, is the principle uniting Goethe’s science with his art, in which the name of one element in a pair of antitheses can fairly be applied to their synthesis, since it represents a richer concept, tending toward one of the original antitheses in an ascending hierarchy. I got out of that and into a cryptic crossword — at least they’re relatively straightforward!

Binary synthesis, the back cover told me, describes the interplay between dynamically opposing pairs of concepts — such as life and death — resulting in an enhanced version of one of them to move forward in a new cycle of the process. This book is an examination of the experience of caring for someone from diagnosis to death, illustrated with examples of the return enhanced. That made a little more sense, but I still felt out of my depth. I mean…I thought I knew a bit about cancer and dying and stuff…

Veronica Adamson originally trained as a nurse and is now an Honorary Fellow in the School of Health in Social Science at the University of Edinburgh.

(Roger Woodruff, June 2018)

If you work in palliative care, a case can be made for avoiding anything to do with death or dying in your leisure time. But sometimes I find it enjoyable to read a bit of well-written fiction, and play it against my own professional experience.

This is the story of five friends who named themselves the Old Friends, close-knit since the end of sixth grade, ‘they have seen each other through careers, children, illnesses, marriage, divorce, addiction, fame, fallouts.’ There is an appropriate range of color, personality, and sexual orientation.

Then one of them, Anna, suffers yet another relapse of malignant lymphoma. Unable to face the prospect of further treatment, she simply says, ‘No more.’ Early on, Anna insists on having her implanted pacemaker/defibrillator switched off and asks her doctor about the possibility of assistance in dying. I read on, wondering how Redel was going to deal with the physical aspects of dying, let alone physician-assisted dying.

But this book is primarily about friendships and all the interactions and reminiscences between the group during Anna’s illness and afterwards. Redel’s little forays into the mind of the doctor and her description of the pretty young nurse from hospice are insightful, but her treatment of death and dying was a bit Hollywoodesque; Love Story came to mind. Yet this is an interesting and well-written book that deals with all the other things that go on in a group of friends when one of them is dying.

In Redel’s own words, ‘…I wanted to consider how, when something personally important is happening, we don't get a break from the rest of life. How we live and how we die makes Before Everything sounds super heavy — but that's really what we do every day — make big and small choices about our bodies, about whom it's okay and legal to love and marry, how we raise our children, how we care for those in our families who suffer from mental illness or addiction or cancer.’

(Roger Woodruff, June 2018)

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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