2020; Volume 21, No 11, November

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

The first thing I noted about this book was the manner in which it was set out. The 10 to 20 headings in each chapter are questions. On the case histories provided, you are being asked your opinion about diagnoses and management. How would you sort out what’s going on here? Why is sorting this out important? How would you treat that? Was the treatment given optimal? The material provided follows the appropriate evidence base and emphasises holistic and multidisciplinary care. Each chapter is authored by a mix of individuals from developing and developed countries, which I think means the material will appeal to a wider range of readers. Each chapter starts with a list of Key Learning Points, and ends with what appears to be an adequate and up-to-date list of references.

The opening chapters review the current status of children’s palliative care (CPC) around the world, underlining the demonstrable need for more. Global platforms such as Universal Health Coverage (UHC) and global concepts such as serious health-related suffering (SHS) can be used to help focus advocacy efforts. There are chapters on holistic assessment, communication, management of pain, respiratory care, gastrointestinal symptoms, fatigue, and nutrition, as well as psychological, spiritual, social, and cultural supportive care. I thought a chapter on neurological problems might have been included. There are chapters about end-of-life care, including supporting the family and dealing with grief and bereavement. Two separate chapters cover perinatal/neonatal palliative care and the management of adolescents and young adults. The chapter on ethical issues includes a clear description of the principle of double effect that clearly distinguishes it from assisted dying.

The list of 54 contributors shows a genuinely international cast. Professor Julia Downing is an experienced palliative care nurse who is presently Chief Executive of the International Children’s Palliative Care Network (ICPCN). Professor Downing served on the IAHPC Board for eight years and currently serves as an adviser. Julia Downing's bio can be found here.

If you work in paediatric palliative care, you should have this book, as it will make you think about what you do. If you teach children’s palliative care, I think it would be hard to go past this as a text. And just before you adult palliative care people switch off, I think this book will make you think about your work — I found myself repeatedly asking similar or parallel questions related to the management of adult patients.

(Roger Woodruff, October 2020)

Other Reviews

Here is a book about introducing the principles of palliative care into the sub-speciality of nephrology. There is much hype about the (recently discovered) deficiencies in the supportive and palliative care afforded to patients with advanced renal disease, but I know those deficiencies were evident 40 years ago.

But let’s look at the book. It is divided into a number of sections. After an introductory overview, the first section describes the unmet supportive care needs of patients with kidney disease with chapters on the ESRD (end-stage renal disease) program and operationalizing the supportive care needed, emphasising the lack of shared decision-making, lack of advance care and end-of-life planning, lack of symptom management, and lack of support at the end of life. The second section is about creating the infrastructure to provide the supportive care, including palliative care education for the multidisciplinary nephrology team. The third section is about initiating appropriate supportive care, including discussions on communication and respecting patients’ preferences. The fourth section is titled “The Right Care to the Right Person at the Right Time” and includes discussions about prognostication, active medical treatment without dialysis, the assessment and management of pain, other physical symptoms, and psychosocial and spiritual needs, as well as geriatric nephrology syndromes and cognitive impairment. The fifth section is about coordination of care and care transitions, palliative dialysis, and the process of dialysis withdrawal. The last section deals with ethical issues, and how to transform practice to support person-centered care. We are told the chapter topics are based on the Coalition for Supportive Care of Kidney Patients Pathways Project package of 14 evidence-based best practices to improve the delivery of palliative care to patients with kidney disease.

So, whilst I may have been aware of the paucity of whole-person/palliative/supportive care for patients with advanced renal disease a long time ago, I have to applaud this book which at least sets it all out and provides rational methods of meeting the needs. At times, I felt a little overawed by “systems” and “infrastructure” and “organisation,” but educating the whole nephrology team about palliative care is probably the way we should be going. This book should be compulsory reading for any nephrologist or trainee nephrologist and would be a useful reference for palliative care physicians and their trainees. And it will be a useful resource for any and all members of the multidisciplinary nephrology team.

Of the 36 contributors, most are from the USA with a handful from the UK, Canada, and Australia.

The blurb says this volume is part of the OUP Integrating Palliative Care series. Similar discussions bringing needed palliative and supportive care to other medical sub-specialities would be a definite step forward and are long overdue.

(Roger Woodruff, October 2020)

The opening chapters trace the historical roots of the contemporary hospice movement and the importance of residential imagery. There is a compendium of planning and design principles for hospices, which I felt were genuinely designed to optimise the well-being of the terminally ill, rather than to just look good or different. In other words, the architecture itself is a therapeutic modality. The importance of natural light, access to fresh air, and balconies or patios are just a few of the features stressed.

And the same applies to the surrounds, underlining the benefits of allowing the terminally ill to commune with nature. Restorative gardens are discussed in terms of having re-affirmative powers. “A hospice garden is a place of enduring, and endearing, amenity, and can function as an extension of the architectural setting… Culture, race, politics, and the patient or family’s socioeconomic status need not restrict this human predilection for involvement with nature.”

Chapter 5 is a detailed discussion of a number of hospices built before 2005 in Sweden, Canada, the U.K., Taiwan, Japan, the U.S., Australia, and the Netherlands. The case studies include plans, photographs, and narratives describing design intentions, and there is a particular emphasis on the therapeutic outcome and comfort for patients, families, and caregivers.

Chapter 6, new to this edition, includes detailed case studies of a further 18 hospices built between 2005 and 2020 and situated around the world, including Europe, Asia, North America, South America, Australia, and Africa. It includes hospices incorporated in a medical campus, freestanding hospices, those designed for children, and complementary alternative settings, such as the Maggie’s Centres built in the U.K.

If you are considering building a hospice or palliative care unit, you must have this book. It provides a wealth of information and examples that will allow you to decide what will best suit your patients and their families. It will also serve as a checklist, for those of us with no training in architecture, of all those features that we would otherwise forget or not even think of in the first place.

Stephen Verderber is a Professor at the School of Architecture, Tulane University in New Orleans. Ben Refuerzo is a Professor in the Department of Architecture at The University of California in Los Angeles.

(Roger Woodruff, September 2020)

This book provides a detailed discussion of the two historical items that have come to define the profession of medicine: the snake/rod of Asclepius and the oath of Hippocrates. Should we uphold the ethic that says physicians must help and not harm the sick? Or is that old hat? Well, here is a thoughtful, logically argued and well-written book that “argues that medicine as a profession necessarily involves stating before others what one stands for: the good one seeks and the bad one seeks to avoid on behalf of the sick, and rejects the view that medicine is purely a technique lacking its own unique internal ethic.”

For me, the arguments are magnified by our current (and uncontrolled) slide into euthanasia and physician-assisted suicide: that we must act according to the wishes of the patient or the state, without recourse to conscientious objection, doing what physicians for two millennia have sworn never to do. Is medicine a profession that seeks to always be of benefit, or is it just a technical trade? Cavanaugh illustrates how the Hippocratic Oath remains clearly relevant and beneficial.

Where I live, physician-assisted dying is pretty much readily available. Introduced by a premier who championed the rights of the individual to self-determination, accompanied by lots of social justice activism, as well as my woke colleagues screaming about autonomy. Many lies were told during the campaign and any anti-euthanasia medical advice was studiously ignored. We were told we were getting the most tightly regulated assisted dying legislation in the world, but the resultant bill doesn’t have any significant restrictions. When the bill was passed, the premier confidently predicted that fewer than a dozen people would avail themselves of the law in the first year. He was almost right — it was over 200. Makes me wonder whether decisions like these should not just depend on trendy politicians and shouty online platforms, but on educated and intelligent reflection as displayed by Cavanaugh.

I am happy to recommend this book to anyone interested in the ethics of medicine or the history of medical ethics. If you like to think about your medicine…

T. A. Cavanaugh is Professor of Philosophy at the University of San Francisco where he regularly teaches medical ethics.

(Roger Woodruff, October 2020)

The thesis behind this volume, I believe, is that in both academia and in public policy, the finality of our existence is rarely acknowledged, let alone the “d-word” mentioned. This book sets out to discuss how we handle, or should handle, dying, death, and bereavement, as individuals, groups, organisations, and as a society. The basic tenet is that clearer policy and a more comprehensive infrastructure are required to support the potential growth in the number of people requiring support or services, either in preparation for death or in response to it.

The first part of this book focuses on managing the end of life with essays about the care of older people at the end of life and the end-of-life care policy in England. The third chapter is about euthanasia, written by a social anthropologist from the University of Glasgow, Naomi Richards. She warmly concludes that the pro-euthanasia movement “now commands significant mainstream support, and has arguably managed to (finally) shake off the association with the Nazi euthanasia programme and with the eugenics movement.” Forget the Nazis! She doesn’t mention that wherever assisted dying has been legalized it has been actively abused and that human beings have suffered. She doesn’t mention that the support is for legalization, not a desire for the procedure: 50% of Oregonians may have voted for assisted dying, but only 0.6% of patients dying of cancer choose it.

Part II focuses on when death occurs with discussions on funeral welfare, policy issues in burial and cremation, and marginalized deaths. The final part looks at the period beyond the point of death with discussions about bereavement, as well as intestacy rules and inheritance tax.

The 14 contributors are all from the UK.

I was concerned the book was on the expensive side. The recommended retail prices shown are from springer.com (the publisher), amazon.com, amazon.co.uk, and booktopia.com.au, respectively.

(Roger Woodruff, October 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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