2020; Volume 21, No 5, May

IAHPC Book Reviews

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

Written by a palliative care physician, I found this book both enjoyable and thought provoking. It is a mixture of the musings of a palliative care doctor, and the struggles she goes through with her own father’s terminal illness with carcinoma of the colon.

She presents colourful stories of how badly some terminally ill people are treated, with unnecessary tests, inhumane communication, and futile therapy, or by doctors unable or unwilling to deal with dying patients. She stresses the importance of the “not for resuscitation” discussion, and that the dying should not be subject to futile CPR. She points to Emma Thompson and Wit (my review appeared here in February 2009 — if you haven’t watched it, you should) as a demonstration of insensitive care, or what I called a “portrayal of everything you should never do.”

Mixed with these are tales of patients whose care has greatly enhanced their end-of-life journey — people cherished as the unique and precious individuals they are, patients helped to live until they die, or helped to overcome apparently insurmountable personal and family problems. I liked the story about the elderly lady admitted to the hospice, who was pretty close to dying. But what she wanted was one last night of bridge with her friends. So the hospice people dressed her up, organised the transport, and off she went. And there are the patients who teach us how to live.

And there are all the issues associated with the terminal illness of her beloved father, a general practitioner. She describes how he deals with surgery, then chemotherapy, and then the delight of not having treatment, even though he knows his disease is progressing. More interesting are what she says of her own responses. The division between being the daughter and being the doctor. She admits that her professional familiarity with death and dying prepared her “not a jot” for her father’s terminal illness.

I would recommend this book to anyone who works in palliative care. It is enjoyable to read and I think it is well written. Her stories and discussions are a mixture of how well it can be done, or how badly. I did not necessarily agree with everything she said or thought, but reading this book prompted me to think about how I might have handled the situations she describes. Overall, first class.

Rachel Clarke originally read Politics, Philosophy and Economics at the University of Oxford before working as a broadcast journalist making current affairs documentaries. She embarked on Medicine at the age of 29 and now works as a palliative care physician in Oxford.

(Roger Woodruff, April 2020)

Other Reviews

Everyone who works in palliative care has heard the stories about seriously or terminally ill patients for whom heroic interventions were instituted in the ED (A&E), and continued in ICU, that on reflection were futile and/or resulted in a great deal of suffering that might have been avoided. So here is a book for Mr. and Mrs. Ordinary, designed to help them understand the decisions that have to be made, including the benefits or disadvantages for the patient, as well as the emotional and financial costs.

The first chapter is about “Making the Case for Doing Things Differently,” and discusses what’s behind the “do everything” approach, and the families who cannot or do not want to face reality; along the way, mention is made of the study that reported that 88% of U.S. physicians would want a DNR order if they had a terminal illness. Then there is a chapter on the decision-making process and having “the conversation”; palliative care gets a reasonable review, and it is noted that some physicians may be reluctant or slow to involve palliative care. A chapter on “What to Expect” explores the psychosocial aspects of dying. The chapter “Other Lessons Learned” includes neat discussions of miracles, quality of life, bucket lists, and being spiritual. The next chapter covers critical decisions that may need to be made, as well as things like competency and medical futility. The following chapter provides a brief case history and discussion of 10 cases from the ER, which serves as a review of the concepts discussed in the preceding chapters. The final chapter is “A Good Death is Doable! Your To-Do List.” There is a list of further reading and a glossary.

I was impressed by the way the concepts and clinical material were presented. The discussions were straightforward and to the point. The little clinical case scenarios were clear and understandable. I thought it was the most lay person-friendly book that I had seen covering these issues. If you work in palliative care, you could do worse than recommend this to appropriate patients or families. And, although written in the USA, that recommendation applies elsewhere as all the issues related to death and dying (with the possible exception of the financial pain in the USA) are universal.

Writing this review, under House Arrest in the Police State that has been termed “The Peoples’ Republic of Victoria,” led me to wonder about what effect the COVID-19 epidemic might have on the community’s attitude to death and dying. For longer than I can remember, we have been writing about “death-denying societies,” with the reality check of the Second World War well behind us. There were hiccups in Korea and Vietnam and the Middle East, but the developed world has avoided any major conflagrations for the last 50 years or more. But COVID-19 has put death and dying back on the front page all around the world. I wondered what things would be like in a year or two, with COVID-19 (hopefully) vaccinated out of existence. Will we go back to our dreamy death-denying societies, or will our communities’ attitude to death and dying be more realistic? Whatever, Saving Lives, Saving Dignity is and will remain a useful book.

Drs. Shapiro and Molk are Emergency Care physicians in Orange County, California, and Phoenix, Arizona, respectively. They are also second cousins. Their forebears, part of a family of seven siblings, migrated from Poland to South Africa and the USA before the Second World War. The other five siblings and their families were killed in the Holocaust.

(Roger Woodruff, April 2020)

“This book examines the dialectic between fictional death as depicted in the media and real death as it is experienced in a hospital setting. Using a Terror Management theoretical lens, Davis and Crane explore the intersection of life and death, experience and fiction, to understand the relationship between them… Terror Management Theory (TMT) asserts that in the face of our certain end, humans invest in cultural worldviews that endow the world and our short time in it with grave significance.” By this stage, I was feeling a little out of my depth.

The stories in this book are told in four voices. There are the clinical stories from a children’s hospital and palliative care unit, mixed with a little poetry encapsulating those experiences; a discussion of film and other media depicting the experiences of death and dying; and “an analytical and philosophical thread providing an academic and intellectual conversation about the end of our lives.”

The authors have categorised peoples’ views and attitudes to death into 14 stories/chapters, including — Death as a Jokester: The Last Laugh, Death as a Lover: Eternal Flame, Death as a Weapon: Dying for a Cause, Death as a Foe: Waging War on Death, Death as a Way of Life: Living Death — and others.

Once I got my head around what they were trying to do, I quite enjoyed this book. Against the very real stories from the children’s palliative care unit, they provide a spectrum of views and attitudes to death and dying and the varied responses that different people have; in their words — “points interlacing the field of medicine with ethnographic and narrative enquiry, thanatology, psychology and cultural studies.” I thought they provided a good appraisal of all the differing situations and ideas and emotions that we as clinicians need to be able to deal with.

Anybody who works in palliative care knows the credibility gap between what happens in the ward and what Hollywood depicts. I carry with me the memory of Ali McGraw gently drifting off (she was actually meant to be dying), looking pretty healthy, with no tubes, never mind a respirator. But the stories here start in a pediatric palliative care unit, not in Hollywood, and I think I may have been guilty of paying less attention to the media stuff. If you work in palliative care, I think you will enjoy reading this book and it will allow you to mull over how you would deal with all the different clinical problems they describe.

Christine Davis is a professor, and Jonathon Crane an associate professor, in the Communication Studies Department at the University of North Carolina at Charlotte.

(Roger Woodruff, April 2020)

Volume 1 of this series was published in July 2017 and was reviewed in the June 2018 Newsletter.

Volume 3 is about the development of palliative care in the developing world. The underlying premise to this work is that “Essential to an evidence-based approach to palliative care is well-designed research.” In his Preface, Silbermann provides a comprehensive discussion of the need for quality research in palliative care and the innumerable barriers to it. He is keen to emphasise that palliative care has an important place long before cancer patients reach the terminal phase, but there is less about palliative care for non-malignant conditions. He laments that more patients are not receiving palliative care; if they were, more might be eligible for clinical trials. His list of reasons for why more people are not receiving palliative care includes the wealth of the country, although the financial cost to the individual patient is not considered.

There are 21 contributions from across the developing world — Latin America, Africa, Eastern Europe, the Middle East, and Asia (Kazakhstan, Iran, China, and the Philippines). They vary in quality — some provide an overview of palliative care in a particular region, whilst others are detailed discussions of research into a variety of aspects of palliative care.

Volume 2 was published in August 2019, and I have not personally reviewed it. Looking at the Table of Contents on the publisher’s website, it is very much about research to develop and progress palliative care. There are 22 contributions and, with the exception of three from Middle Eastern Arab states, they are all from the developed world. I noted discussions of the need for palliative care for patients with mental illness and for those with renal failure. Two other chapters that caught my eye discussed going beyond quality of life to consider complexity, and defining what “meaning” means for terminally ill cancer patients.

There’s lots and lots of interesting stuff here, but I have to say the books are a little on the expensive side.

Professor Michael Silbermann originally trained in maxillofacial surgery and was a professor at Technion (Israel Institute of Technology) in Haifa. Since 1996, he has been the Executive Director of the Middle East Cancer Consortium, an organisation promoting collaboration and the development of services, including palliative care, across the region.

(Roger Woodruff, April 2020)

As I looked through this book, my lack of experience in paediatric hospice care and my lack of knowledge about music therapy were painfully underlined. But what really stood out was the passion the contributors/music therapists had for their work.

To try and provide you with an idea of the range of material covered, the following is a list of the chapter headings or subheadings: Working with the breath with life-limited and life-threatened children; Music therapy in a children’s hospice; The developing role in a multidisciplinary team; Evaluating music therapy services in children’s hospices; The scope and provision of music therapy in children’s hospices; Fostering the relationship between parent and child using music therapy; Music therapy in the community setting for children and young people with cancer; An exploration of the value of performance in a joint music therapy and community music project in a children’s hospice; Music therapy, identity and empowerment in young adult’s palliative care; and, A therapeutic songwriting project for young adults with life-shortening illnesses.

It looked pretty good to me. If you are involved in paediatric hospice care or music therapy, you should check it out.

Anna Ludwig is a freelance music therapist working for several charities in Scotland, including Kilbryde Hospice and the Team Jak Foundation.

(Roger Woodruff, April 2020)

This book aims to provide accurate and helpful information for those who find themselves caring for their aging relatives, partners, or friends.

There is a lot of information here, well set out and with the liberal use of headings. The author provides an overview of the whole health system, from the doctor’s office to nursing homes and hospice care. There are good descriptions of who does what and how health issues are evaluated. There is guidance about the treatment of common problems — what can be done at home and when to call for assistance.

Although the medical material may be exportable, this book is very much about the organisation and administration of health care in the USA. The information is provided in a manner accessible to the lay reader and I think would definitely be of benefit to some caregivers.

Muriel Gillick is a physician specializing in geriatrics and palliative care and is a professor in the Department of Population Medicine at Harvard Medical School.

(Roger Woodruff, March 2020)

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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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