2020; Volume 21, No 12, December

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 sentence says it all: “One of the major successes of modern medicine has been the integration of the ethos, knowledge and skills of palliative care into the standard care of patients with progressive disease.”

The book is divided into four sections. Part I is about the palliative care of respiratory disease and describes the wide variety of palliative care needs of patients with different respiratory diseases, where such care should be available, and the different ways that multidisciplinary care can be delivered.

Part II is about respiratory symptoms, with separate chapters on breathlessness, haemoptysis, cough, and pain. These provide good descriptions of the pathophysiology, aetiology, and assessment, as well as the pharmacologic and non-drug management options.

Part III is about respiratory diseases and covers lung cancer, malignant pleural effusions and mesothelioma, chronic obstructive lung disease, interstitial lung disease, cystic fibrosis, and neuromuscular disease. Particularly in the chapters dealing with malignancies, I was impressed by the side-by-side discussion of the usefulness and limitations of both disease-modifying and palliative therapies, all linked to evidence from the literature. There are also chapters on palliative care in the ICU and lung transplantation.

The last section is on end-of-life care, which I thought provided a good description of how to navigate what is a potential clinical minefield: “Crucial to delivering good end-of-life care is the recognition that palliative care often runs in parallel with disease-modifying treatment and emergency care. This allows full medical treatment to continue whilst overcoming the current reality of respiratory patients often failing to have their palliative care needs addressed.”

I found this book very satisfying. The integration of palliative care into the management of patients with chronic respiratory disease, together with the provision of appropriate end-of-life care, is something we dreamed about back in the 1980s when palliative care was finding its feet. For those who work in respiratory medicine, this book will demonstrate how the care of their patients can be improved. For those in palliative care, it shows that it is possible to work alongside others, providing multidisciplinary care. This book will be a useful resource for any doctors and nurses looking after patients with progressive respiratory disease and should be on the bookshelf both in the respiratory ward and the palliative care unit.

There are 18 contributors, all from the UK.

(Roger Woodruff, October 2020)

Other Reviews

I was entranced by Kerr’s description of how he got into palliative care. When he was finishing his speciality training in cardiology, always doing everything possible and with little or no regard for the way any given individual might wish to die, he saw the light whilst working after hours at Hospice Buffalo. When he informed the Cardiology department that he was leaving to pursue a career in palliative care, most saw it as a waste of a professional life, and one even suggested a psychiatric referral. I bonded immediately, thinking of all the looks of amazement I had received, together with the knowing little shake of the head; but I can’t remember anyone saying I should see a psychiatrist.

But, whilst this book offers some pertinent observations about the inadequacies of medical training, it is meant to be about pre-death dreams and visions. Meaningful pre-death dreams have been recognized since time immemorial, and from all sorts of different ethnic and religious groups from around the world. But dying, never mind pre-death dreams, was not mentioned when I went to medical school. This book explores the pre-death dreams and visions of patients at Hospice Buffalo, most of which were positive or affirmative, although occasionally confrontational. The relevance to the life lived is explained and the positive aspects underlined. And if the dying share their dreams with those they are leaving behind, it may help the way they mourn and grieve.

I have no problem about pre-death dreams and visions, or their benefit to the dying or to those to be bereaved. And I am quite willing to believe that a little more sympathetic interest on the part of the palliative care staff might be of extra benefit to these dying patients. My problem reading this book, which is written for the lay reader rather than the professional, is that dreams and visions seemed to be happening far more commonly than in my experience. The original study by Kerr’s group (Kerr CW et al. J Palliat Med 2014; 17: 296-303) was of 59 consenting inpatient admissions who had been appropriately screened for psychotic features and delirium, who were interviewed daily until death, and reported a high incidence of pre-death dreams. But these study patients, Dr. Kerr informs me, were drawn from about 300 inpatient admissions during the 18 months of the study, which make the incidence figure seem more realistic to me.

Kerr’s hope is that this book will inform and empower patients nearing death, as well as their families and caregivers. Perhaps it will also open up an informed professional discussion of these matters.

Dr. Kerr is both Chief Medical Officer and Chief Executive Officer at Hospice Buffalo in New York. Carine Mardorossian is a professor of English at the University of Buffalo, who became involved with this book because she boards her horse at Kerr’s barn.

(Roger Woodruff, November 2020)

Chaplains are identified as core members of the healthcare team, but their important role in medical decision-making has not been emphasized. This book of case studies sets out to address this question. There are nine case studies — racially, culturally and religiously diverse — chosen to highlight the role of the chaplain in assisting patients and families in medical decision-making.

The first three cases illustrate where the chaplain’s focus on the patient narrative informs and frames the goals of care, adjudicates the timing of the medical decisions, and impacts the outcome of those decisions. The second three illustrate the impact of the chaplain’s attention to emotions and family dynamics on the medical decision-making process. The last three demonstrate the sensitivity with which an experienced chaplain, working carefully within religious and cultural boundaries, is able to provide effective patient support.

Each trio of cases is then critiqued by another chaplain and by another member of the treatment team — respectively, a palliative care physician, a psychologist, and a family medicine physician. I found the discussions by the non-chaplains interesting.

This book is not about how to be a hospital chaplain, never mind “best practice.” It’s a collection of case studies, thoughtfully discussed, demonstrating the important contributions that chaplains may make to medical decision-making. Anyone who works in palliative care, be it as a chaplain or a pastoral care worker, or anyone with a particular interest in the pastoral aspects of care, will benefit from reading this book.

There are 16 contributors, all from the USA.

(Roger Woodruff, October 2020)

Following my review of Limbo et al (eds.) Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals (the April Newsletter Book of the Month), this month brings two further volumes on perinatal and neonatal palliative care: the current volume and Mancini et al (eds.) Neonatal Palliative Care for Nurses.

Perinatal palliative care (PPC) involves all and every aspect of care for pregnancies in which there is a life-limiting fetal condition (LLFC).

The book is in four sections. The first provides an overview of the field and the interdisciplinary team, various theoretical perspectives used to describe the issues encountered (I had not considered the concept of fetal personhood before), the ethical issues involved, and the experiences and needs from the point of view of both the families and the caregivers. Part II covers obstetric issues and prenatal counselling, genetic counselling, the management of neonatal pain and non-pain symptoms, as well as the roles of palliative care, spiritual care, and bereavement care. Part III is about models of PPC and deals with hospital- and community-based programs, and the operation of the interdisciplinary team. The last section covers the special considerations required for underserved and minority populations (including LGBTQ), professional education about PPC, and a summary of where the field is headed.

There is ample use of tables and lists and diagrams as well as lots of references. Some of the clinical stories in the case studies were appalling, which left me full of admiration for the people who do this work every day.

Comparing this volume to Limbo et al is difficult. I sense the present volume may have an extra layer of detail, but I am in no way qualified to provide a qualitative comparison. If you work in PPC, you need to look carefully at both these volumes.

There are 41 contributors, all from the USA. Dr. Erin Denney-Koelsch is a palliative care physician at the University of Rochester Medical Center/Strong Memorial Hospital in Rochester, New York. Dr. Denise Côté-Arsenault is a nurse and researcher at the St. Louis University Trudy Busch Valentine School of Nursing in St. Louis, Missouri.

(Roger Woodruff, October 2020)

Following my review of Limbo et al (eds.) Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals (the April Newsletter Book of the Month), this month brings two further volumes on perinatal and neonatal palliative care: this volume and Denney-Koelsch et al (eds.) Perinatal Palliative Care: A Clinical Guide.

Despite its title, this book includes both of what are elsewhere described as perinatal palliative care (related to the diagnosis of a life-limiting foetal condition) and neonatal palliative care (where the need is evident only after the birth).

The book is divided into two parts. The first, which accounts for about 80% of the book, is about achieving quality nursing practice in neonatal palliative care. There are discussions about concepts, models of care, the importance of good communication, and dealing with spiritual, cultural, ethical, genetic, and legal issues. There are chapters on antenatal care, the management of multiple births, and effective neonatal symptom management. The sections on the decision-making process and advance care planning underline the need for good communication. The last chapter is about exploring care after death, for both the baby and the family. I note the discussion on supporting staff is elevated to Chapter 3.

Part II provides a brief global snapshot of how neonatal palliative care is provided in 14 different countries.

Each chapter starts with a list of five key learning points and ends with a list of key summary points for clinical practice provided by a panel of four neonatal nurses. The text seems reasonably ordered with an adequate use of lists and tables and explanatory diagrams. It is definitely aided by the inclusion of numerous case studies. The text is interrupted by a lot of Time for Reflection boxes, which I thought were more of a distraction, and lots of Linkage boxes directing you to some other chapter, which given the Table of Contents and Index were unnecessary.

Comparing this volume to Limbo et al and Denney-Koelsch et al is difficult and I feel in no way qualified to provide a qualitative comparison. If you work in perinatal or neonatal palliative care, you need to look carefully at all of these volumes.

The three editors all work in London. There are 72 contributors, 40 from the UK and the rest from around the world.

(Roger Woodruff, October 2020)

This volume comes from the same team — three health communication researchers together with a nurse expert in health literacy — that brought you Communication in Palliative Nursing (the September Newsletter Book of the Month). They developed a model represented by the acronym COMFORT that details multiple communication facets of palliative care, and in which the “F” represents family caregivers. They went on to develop a family caregiver typology identifying four distinctive kinds of caregiving, referred to as the Family Caregiver Communication Typology (FCCT).

There was a chapter on health literacy and all the implications it may have for the caregiver (and the patient). There is a suggestion that the way medicine is practiced in the U.S.A. may aggravate problems related to health literacy, but I have no problems with doing all that one can to help the caregiver and their patient.

Then there was a chapter on palliative care. The authors feel that a palliative approach to the patient and caregiver is essential for optimal care; I had no problem with that. But they went on to describe three different journeys depending on whether the patients and families do or do not encounter palliative care when they are faced with chronic illness: the isolated journey for which palliative care does not exist; the rescued journey for which palliative care happens late in the disease course; and the comforted journey for which palliative care occurs early in the illness and is present throughout. I thought their energy would have been better spent advocating the wider availability of palliative care. And whilst I agree with the need for a palliative care approach, I found it curious that it was referenced to the 2018 Consensus Project for Quality Palliative Care, as though it was some kind of “breaking news.” Dame Cicely Who? Derek Doyle? Balfour Mount?

Then there are chapters on the four different caregiver types — the Manager, the Carrier, the Partner, and the Lone Caregiver. Each chapter concludes with a listing of 20-odd features or characteristics. Whilst I accept that these patterns may be genuine, I wasn’t sure there was something I could take away and usefully integrate into day-to-day care.

The last chapter is a bit more positive, but the task of providing detailed assistance for each and every caretaker is mind-numbing. “It is our hope that the provision of the FCCT will assist healthcare providers in lessening caregiver burden and provide caregiver communication and health literacy interventions that support, guide, and educate each caregiver type through their caregiving journey.”

The blurb refers to their engaging and rigorous writing style. I found it obtuse and a distraction. “Exigencies of the caregiver”, “different expectations of conformity”, and “typology” are not words or phrases I use discussing clinical care.

(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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