2019; Volume 20, No 4, April

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

This book ‘is a dialogue between those who live, die, and provide care at the margins.’

In the preface and introductory chapter, we are introduced to a number of very impoverished Afro-American inner-city folk who are dying. As well as providing the social and historical background, Moller emphasizes the need for attentive and mindful listening. ‘In short, the suffering of the poor is exacerbated by inattention to and dismissal of their needs. [But]…if we take notice of them by paying attention to their stories we are led to an appreciation of their soulfulness, their humanity, and become observers of the fundamental goodness that defines much of who they are.’ These stories may ‘illuminate strength and dignity, and profile the courage of people who live creatively and meaningfully in burdensome circumstances.’

Most of the rest of the book comprises narrative stories, caringly and carefully analyzed. There’s Milton (‘Cowboy’) with lung cancer, who has lived under a bridge for years. J.W. is dying of cancer after a ‘life on the streets.’ The Whites are both dying, but not before enduring ‘neglectful treatment and indignity in the county nursing home.’ There’s Annie, dying slowly of COPD and lung cancer who ‘in the midst of unimaginable pain and suffering…expresses gratitude to all of those who cared for her.’ Bill, dying of stomach cancer, who said of his care ‘we have been cast aside, disregarded and forgotten about.’ And several more. The strengths and weaknesses of the people are described, as well as how their care could have been improved (plenty to talk about there), and how what we do may sometimes make their situation worse.

There is a chapter discussing what has, or has not, been done by Presidents Bill Clinton through Donald Trump. But I feel sure that the ‘marginalized poor’ are not unique to the USA, and the thesis of this book deserves to be read more widely.

I found some of the people and circumstances described a bit confronting, but the discussions of their spirit and strengths, and how their care should have been managed were fascinating. We are urged to openly acknowledge their struggles and tend to their sufferings with respect, skill, and mindfulness. If you work in palliative care and have marginalized poor amongst your clientele, this book is a must-read. But anyone who works in palliative care will benefit from reading and reflecting on the thorough discussions of looking after the marginalized poor who are dying.

Dr. David Wendell Moller, PhD, is the Director of Health Care Ethics at Anne Arundel Medical Center in Annapolis, Maryland.

(Roger Woodruff, February 2019)

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Other Reviews

This book is about why spiritual care is avoided or neglected by clinicians managing serious illness, and to consider the consequences of this divorce between contemporary medicine and spirituality/religion. The thesis for this book started many years earlier, at the time when Michael and Tracy were in theological seminary and medical school, respectively. Today’s scientific medicine is focused on the important practical issues, and the ‘bottom-line,’ rather than care and compassion. The merely theoretical concerns of spirituality are pushed aside, but the Balbonis argue that scientific medicine needs faith and spirituality.

After an introductory chapter, the book is divided into three parts: Empirical and Sociological Perspectives on the Separation of Medicine and Spirituality, Theological Perspectives on the Separation of Medicine and Spirituality, and Restoring Hospitality to Medicine. The first is about spiritual care being infrequently provided, including the causes and the consequences. The second is about how contemporary medicine, divorced from spirituality, can assume a religious-like form or immanence. The last discusses possible future directions, and argues the need for spirituality to again be part of medicine.

The 20th century drained spirituality from medicine, due to changes both in medicine and society. I do not remember a word about spirituality when I was in medical school. Only when I became involved in palliative medicine did I really learn about spirituality, and I wondered whether palliative care is leading the way to the reestablishment of spirituality as an important part of medical care. This book greatly emphasizes spiritual care as part of medicine, but is not a ‘how to’ book.

Google informs me that Michael Balboni, PhD, ThM, is an Instructor in Psychiatry, and Tracy Balboni, MD, is Associate Professor of Radiation Oncology at the Dana-Farber Cancer Institute and Harvard Medical School. They co-lead the Longwood Christian Community, a residence for Christian health care trainees (of any denomination) in Boston.

This book, which emphasizes the importance of spiritual care, should be of interest to physicians and nurses as well as chaplains and pastoral care workers.

(Roger Woodruff, February 2019)

This is a re-issue of a book first published in 2009, but not reviewed here. On reflection, I thought it provided important insights into palliative care from the social work perspective, and felt the topics discussed were as relevant today as they were in 2009.

The book begins with a discussion of the difference between palliative care and end-of-life care. In addition to those with a terminal illness who require significant professional/medical input (who end up receiving palliative care), there are considerably more people who are approaching the end of life who do not require specialist medical or nursing assistance, but they and their families deserve the same psychological and social support. One of the messages of this book is that many things that social workers have learned from working in palliative care are relevant to end-of-life care generally, an observation I would have thought obvious. Then the authors state that end-of-life care was sometimes known as ‘non-specialist palliative care.’

There are chapters on the role of social work in palliative and end-of-life care, identifying areas of knowledge about death and dying that may be useful in practice, exploring communication in end-of-life care, engaging in and assessing end-of-life care, useful social work interventions in end-of-life and palliative care, ideas about and interventions for grief and bereavement, multi-professional end-of-life care to promote holistic care, value and ethical issues that arise in end-of-life social work, and the potential value of group and macro interventions in end-of-life social work.

The text is sprinkled with illustrative clinical anecdotes that underline the need to pay attention to the wishes and the emotional and cultural reactions of both the patient and their carers.

This book is primarily directed at social workers but, given the overlapping of professional roles within the palliative care team, I think it deserves wider readership. Doctors and nurses with an interest in the social aspects of care will benefit from this snapshot of the problems viewed from the perspective of social work. And if you are involved in palliative care education, this book provides a succinct picture of end-of-life social work.

Margaret Reith is the senior social worker at the Princess Alice Hospice in Surrey. Malcolm Payne is policy and development adviser at St. Christopher’s Hospice in London, where he was formerly the director of psychosocial and spiritual care.

(Roger Woodruff, March 2019)

The Introduction says that the aim of this book is to raise the awareness of health care professionals working in palliative care of the experiences of those families and patients on the palliative care journey. It is divided into two sections. Part I, titled Palliative Care Practice, includes chapters on patients with cancer, end-stage pulmonary disease, end-stage heart failure, multiple sclerosis, end-stage renal disease, and advanced dementia. Each chapter is an overview with an emphasis on holistic care, not just the medical angle. Part II, Support for Families and Caregivers, includes chapters on symptom control, providing family support, grief and bereavement, spirituality, ethical dilemmas, and end-of-life care in the community. The ethics chapter has a nice discussion of the balance between beneficence and autonomy in end-of-life care and decision-making.

Throughout the book, the patients’ feelings are emphasized with illustrative stories and patient quotations. Indeed, the chapter on living with cancer is written by a former health service manager who was diagnosed with myeloma and has required dialysis.

This is a good primer on palliative care for nurses and other allied health professionals; my opinion is that it would be good for medical students and interns as well.

John Costello is an honorary lecturer at the University of Manchester School of Nursing, Midwifery and Social Work. There are 12 contributors, all of whom work in the UK.

Note: Review copy supplied by Footprint Books: www.footprint.com.au. Australian and New Zealand readers can get a 15% discount at the Footprint website using the discount voucher code BCLUB19.

(Roger Woodruff, March 2019)

This is the print edition of a special issue of the open access journal Children, published online in 2018.

The opening article, ‘Delivering Pediatric Palliative Care,’ by Drs. Stefan Friedrichsdorf and Eduardo Bruera, advocates that palliative care should be available concurrently with continued efforts to control the underlying disease, so that families no longer have to opt for one over the other. Professor Julia Dowling and her colleagues contributed an article ‘Paediatric Palliative Care in Resource-Poor Countries.’ In all, there are 21 articles covering many aspects of pediatric palliative care and there were several about palliative care for children with progressive nonmalignant diseases. I also noticed papers about caring for the parents.

If you work in pediatric palliative care and are not familiar with this publication, check it out on the website. The full text of the articles included in this volume are available for free in PDF format here.

Dr. Friedrichsdorf is from the Department of Pain Medicine, Palliative Care and Integrative Medicine, Children’s Hospitals and Clinics of Minnesota, in Minneapolis.

(Roger Woodruff, February 2019)

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‘The purpose of this book is to introduce the first comprehensive text to delineate principles and practices of body image care for cancer patients that can be utilized by healthcare professionals across various disciplines to enhance care delivery and to continue to fuel scientific advancements in the field.’ Sounds impressive.

Body image not only includes a long list of visible changes but also any organ dysfunctions secondary to the cancer or its treatment. I agree that body image is an important issue (I would hesitate to call it critical) for patients with cancer, but except for the emphasis on psychology, there appears little that is radically new in this volume. When I trained, you did not treat a breast cancer, you looked after a woman with breast cancer, all of her. Managing the sequelae of her disease and treatment, referred to here as body image issues, was part of the deal. It frequently involved allied health professionals and, where need be, the liaison psychiatry team. It was variously referred to as symptomatic or supportive or palliative care.

In the chapter on lymphedema, they describe what it is and who may get it. In the section on treatment, there is no mention of measures to prevent infection or the usefulness (or otherwise) of mechanical pumps. It is noted, however, ‘that the most common color for compression garments is beige and thus may not match the skin tone of darker-complected individuals.’

As with oncology textbooks of old, patients with advancing or terminal disease do not seem to exist. Which is a pity, because attention to body image issues can occasionally be so important and so comforting for a dying patient.

Dr. Fingeret is the owner of Fingeret Psychology Services in Houston, Texas. Dr. Teo is a psychologist at the Duke-NUS Medical School in Singapore.

If your palliative care work involves cancer patients, this book provides a good summary of palliative care (or body image issues, as they are described here) from the time of diagnosis through to survivorship, although people with advanced or terminal disease are not included.

(Roger Woodruff, February 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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