2019; Volume 20, 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

In the preface, the editors indicate their goal was to produce a comprehensive, clinically relevant, and state-of-the-art book aimed at advancing palliative care, as a science, a clinical practice, and an art. It emphasizes the multi- and interdisciplinarity of palliative care and sets out to cover all aspects of palliative care: physical, psychological, social, and existential, or spiritual.

The book has 101 chapters presented in 11 sections. Each chapter is well structured with a table of contents at the start and a good system of headings. Each is referenced, but would have been enhanced by an appendix directing the reader to the best information resources on the Internet.

Part I is titled “Palliative Care: Definitions, Development, Policies,” and includes discussion of the nature of palliative care, the quality of life, the development of palliative care, differences in needs, and the organization of services in various parts of the world. I was a little surprised there was no mention of IAHPC.

Part II is “Symptom Assessment and Management,” which includes 20 chapters on the treatment of pain and a range of physical and psychological disorders. These varied in quality. Some were very good, with useful tables and treatment algorithms. Others left me looking for at least one more level of detail.

Part III, “Palliative Care Professionals and Provision,” considers issues regarding generalist and specialist practice, access, interprofessional care, advance care planning, art and music therapy, sexuality, and dignity; there are chapters on grief and bereavement, end-of-life care, and palliative care education.

Part IV, “Organization of Palliative Care in Different Settings,” describes palliative care in all its various settings, including the ICU. Part V is “Palliative Care in Specific Disease Groups,” with chapters on cancer and the various organ failures. Part VI is “Palliative Care in Specific Populations,” and considers palliative care for the elderly, the young, the mentally handicapped and Indigenous peoples. Part VII is “Palliative Care Emergencies,” with 14 chapters covering a range of acute physical and psychological conditions.

Part VIII, “Ethics of Palliative Care and End-of-Life Decision-Making,” includes discussions of palliative sedation, nutrition and hydration, and requests for assisted dying. The next section is about various aspects of “Research in Palliative Care.” The last two sections are “Public Health Approach in Palliative and End-of-Life Care” and “Financial Aspects and Cost-Effectiveness in Palliative Care.”

I thought that the discussion of assisted dying was grossly inadequate, although I was not sure whether this was attributable to the contributors or some editorial directive. Timothy Quill et al. bask in the “increasing trend towards legalisation” and “many patients now want to explore PAD [physician-assisted death]...”; the world is at last catching up with their forward thinking. Objections to the absolute dominance of autonomy are described in a dismissive manner. They go on about the duties of “the interdisciplinary team responsible for care” and the importance of having palliative care consultations and psychiatric reviews. Message from the real world: they’re not happening.

We are reassured that problems cannot occur in Oregon because only self-administered medication is used, and only mentally competent patients receive it; actually, there is zero information about the mental state at the time of administration or how the medication has been administered for the 60% of patients where no health care provider was present. Other countries where assisted dying is practised are listed, but any further information is avoided. Abuse? A thousand Dutch patients a year were dispatched without request. Slippery slopes? Just being “tired of life” is enough to get it now in Holland. “Normalization”? Belgian children? Unfortunately, I believe that a textbook of palliative care, written for an international audience, now requires a detailed discussion of all aspects of the assisted dying debate. At least where I work, the advocates of assisted dying despise palliative care and those who work in it. [Readers wanting a broader view of the assisted dying literature are invited to look at my booklet, free to read on the IAHPC website, Euthanasia and Physician-Assisted Suicide: Are They Clinically Necessary or Desirable?]

So, how does this book stack up? The range of material covered is impressive. It pays more attention to the multidisciplinary nature of palliative care, both in coverage and authorship, and there is more exploration of the social science and public health aspects. I felt that the clinical chapters were a variable feast, most providing the detail I expected, but some not. The real problem with this book is the cost. According to Amazon sites, this book is well over twice as expensive as the Oxford Textbook of Palliative Medicine. In the preface it is noted that this book will be of value to a great range of people: doctors, nurses, all allied health personnel, researchers, and policy makers. True, but I’m not sure how many of them will be comfortable buying it. It probably boils down to what you are looking for. You can choose this single publication that has a wider scope of coverage but occasionally seemed a bit superficial. Or you can select a specialist textbook that gives in-depth coverage of your particular area of palliative care.

Roderick Macleod is a palliative medicine specialist at Harbour Hospice in Auckland, New Zealand, and consultant to Hammond Care in Sydney, Australia. Lieve Van den Block is a social scientist and clinical psychologist. She is Professor of Ageing and Palliative Care at the Vrije Universiteit Brussel in Belgium. There are around 200 contributors, of whom about half are from Australia and New Zealand; 40 are from the UK and 50 are from elsewhere in Europe.

(Roger Woodruff, August 2019)

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Other Reviews

Following her mother’s death from cancer, and the unexpected death of her brother in a motorcycle accident, Rice reflects on the enormous changes that have occurred over the last few generations in both our exposure to and attitudes toward death. She describes the 11 woodcuts that formed the medieval ars moriendi, and sets out here to write an 11-part modern version for carers and loved ones of dying patients.

She starts with how to companion someone who is dying, explaining what can be done to make a death a good experience and emphasizing the role of family and friends at the bedside; there are lists of problems that may occur and lists of what you can do to overcome them. Next, she talks about the non-physical side to death, including the spiritual (but not necessarily religious) experiences; again there is guidance in the management of problems. Third, she deals with the management of pain and other physical symptoms and provides an overview of the assisted dying debate (including the impossibility of the guaranteed reassurances by the pro-euthanasia lobby). The next two chapters are about what companions see when someone dies, and what happens after someone dies (the “housework”). Sixth, she discusses the skills, particularly the social ones, to help when a death is unexpected. The seventh is about how to say goodbye, and the eighth concerns ways to reach out when grief strikes. The next two are about planning for your own death and deciding where you wish to die, hoping to make things better for you and easier for your loved ones; there is useful information about wills, advance directives, and the different sites of care. In the last section, “we learn to talk about how we will die, because using words will show others what we want and also dispel fear – our fear and that of others.”

I was very impressed by this book. If you work in palliative care, reading it will be a useful reminder of all the misconceptions, and the knowledge (or lack of it), that many patients and their carers bring to our conversations, and how we can deal with the problems at their level. For the lay reader, it is well written and organized. I did not come across any clinically inaccurate statements, and she manages to discuss all the hard bits without saying anything frightening. And, yes, I would be happy to recommend this book to any patients or their loved ones seeking more information.

Margaret Rice is a freelance journalist and medical writer from Sydney, Australia. She writes a blog about end-of-life conversations, titled Good Grief! Resources for grief management and palliative care.

(Roger Woodruff, August 2019)

In the introduction, Clayton states, “My passion is to help you be comfortable asking for hospice help and, where possible, receiving the full six months of care that is offered. These stories will show you what a blessing hospice care is to the patient, the caregiver and other family members.”

So, this is a book of stories, gently told, about hospice and end-of-life care.

Clayton opens with a collection of stories about her first visits to hospice patients. They are well told, and whilst she is gentle in her discussions, she makes no effort to hide the clinical difficulties, whether they be the patient’s, the caregiver’s, or her own.

In the following chapters, there are groups of stories dealing with many of the important aspects of hospice care, including hospice care at home, caring for the caregiver, hospice at a place other than home, finding meaning, social isolation, saying goodbye, and remembering. Then there is an interesting chapter in which health care professionals are the subject, dealing with mixed feelings about end-of-life care. This is followed by two chapters covering good end-of-life decision-making, and Clayton’s own reflections.

I thought this book was well written and, authored by a health care professional, it is clinically accurate. If you work in palliative care, you will enjoy reading these stories, which will allow you to reflect on how you would or could have addressed the problems. Would I be happy to recommend this book to patients and family members who want more information about hospice care? I think so.

Karen Clayton trained as a medical social worker and as a sociologist.

Note: Review copy supplied by Footprint Books. Readers in Australia and New Zealand are eligible for a 15% discount at the Footprint Books website using the code BCLUB19.

(Roger Woodruff, August 2019)

Dear’s focus is on what patients and their caregivers can expect to face in their final months. The story begins with her own mother’s death, followed by a lot of research and interviews with a range of health care professionals, together with her own knowledge from working as a hospice volunteer.

There are well-written chapters on what it’s like to receive a fatal diagnosis: the existential slap, the different trajectories of dying, about maintaining a degree of control, thinking about where we might choose to die, whether dying hurts, coping and dying well, growth and legacies, cerebral disturbances that may accompany dying, and the last few hours. Each contains numerous and well-explained references to the medical literature; the bibliography at the end of the book includes more than 100 citations, many with familiar names.

There is a chapter titled “Checking Out Early” that deals with assisted dying (AD). Whilst I accept that Dear is trying to provide an intelligent and informative description, she falls into the trap of repeating the usual trite reassurances, and doesn’t get to grips with all of the facts. Inadequate pain relief is included in the reasons for requesting AD, but Ganzini reported that concerns about pain were “rated as unimportant.” Dear notes there are no restrictions regarding psychiatric evaluation of patients requesting AD, but not that only 4.9% of patients were referred for such examination, or that fewer than 6% of Oregon psychiatrists were confident that a single evaluation could adequately assess whether a psychiatric disorder was impairing the patient’s judgment. She notes the need for expertise in dealing with requests for AD, but doesn’t mention the two Oregon doctors associated with Compassion in Dying who approved a man’s request, but “missed” his long history of depression and multiple attempted suicides. And she tried to reassure me that everything was OK with AD in Oregon — nothing but self-administered medication was used, only mentally competent patients received it, coma and death came quickly, and there were no serious complications. Well, my understanding is that there is zero information on any of these matters for the 60% of patients where no health care provider was present. For those for whom information was available, the time to coma was one to 240 minutes, and the time to death varied from one minute to 104 hours. And what of the six patients who regained consciousness, including the man who woke up three days after committing suicide and lived another three months?

Perhaps with the exception of the chapter on AD, I think this book is very good. The material discussed amounts to an understandable explanation for the layperson of stuff that is in the medical literature. If you work in palliative care, you will enjoy reading this book, and you will benefit from being made to think about these issues at the patient’s level. And, yes, I would be happy to recommend this book to patients or family members seeking information.

And I learned about J.K. Rowling’s Thestrals.

Jennie Dear is a writer, former Associate Professor of English at Fort Lewis College in Durango, Colorado, and a longtime hospice volunteer.

(Roger Woodruff, August 2019)

This book “offers multicultural and international perspectives on how art therapy can be of help to individuals, groups, families, communities, and nations facing death and dying as well as grief and loss.”

It is divided into three parts. The first is about art therapy with individuals; the second is about art therapy for groups, families, and communities; and the last concerns art therapy for cross-cultural encounters, national tragedies, and disenfranchised grief.

Looking through the book, it appears to be comprehensive and detailed, and scholarly yet practical, but I decided that I had no qualification to attempt to pass judgment on the content.

If you are an art therapist or have a particular interest in art therapy, then I think this book will be of considerable interest to you. It would also be a useful addition to the palliative care unit bookshelf, available as a reference for any or all of the members of the multidisciplinary team.

Michèle Wood, Becky Jacobson, and Hannah Cridford are art psychotherapists from the UK. There are more than 50 contributors from around the world.

(Roger Woodruff, August 2019)

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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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