2018; Volume 19, No 9, September

IAHPC Book Reviews

By Dr. Roger Woodruff, IAHPC Reviews Editor

Palliative Care Book of the Month

David Clark first met Cicely Saunders in 1994 and worked with her over the following 11 years to document her contribution to the modern hospice movement. This included many interviews as well as cataloguing what sounds like a truckload of her papers and correspondence, which form the basis of this wonderful biography.

The chapters follow the chronology of her life. Her childhood, studying social science at Oxford, training to be a nurse at St. Thomas’s, working as an almoner, then becoming a doctor, followed by the decade Clark calls ‘Learning the Craft and Crafting the Vision,’ which concludes with the opening of St. Christopher’s Hospice in London. The next chapter is about ‘the expansive years,’ when there was rapid development of hospice and palliative care around the world. The last is about reflections, illness, and the years leading up to her death.

Whilst the chapters roughly follow her life course, the content is arranged thematically, and there are useful subheadings throughout the chapters that indicate clearly the issue being discussed. I was impressed by the clarity with which Clark writes and also by the detail, including records or recollections of conversations that occurred decades earlier, all carefully referenced.

Professor David Clark is a sociologist at the University of Glasgow who has made a significant contribution to the description of palliative care and its history. Four of his books have been reviewed in this column (and all of which I enjoyed): Cicely Saunders: Founder of the Hospice Movement - Selected Letters 1959-1999 (Oxford University Press, 2002); A Little Bit of Heaven For the Few? An oral history of the modern hospice movement in the United Kingdom (Observatory Publications, 2005); Transforming the Culture of Dying — The Work of the Project on Death in America (Oxford University Press, 2013); and To Comfort Always — A History of Palliative Medicine Since the Nineteenth Century (Oxford University Press, 2016).

This book is a fitting tribute to the passion, tenacity, and intellect of a remarkable woman. And whilst Clark gives credit where it is due, he doesn’t hide the idiosyncrasies that I think might have made her a little difficult to get on with at times.

On the front cover is the portrait of Cicely by her husband, Marian Bohusz-Szyszko.

First class. Fascinating. Strongly recommended.

(Roger Woodruff, August 2018)

Other Reviews

This book is about Florence Wald and her remarkable, but unpublished, study of terminally ill patients and their families that was a central part in her campaign to establish the first U.S. hospice.

Abel’s description of the profession in the ‘60s took me down memory lane. Doctors full of divine arrogance and paternalism, with nurses their handmaidens to do as they were told without question. Unrelenting continuation of curative therapy for the dying (provided, of course, that they could afford it). Possibly worst, women with breast cancer who developed metastatic disease were made to feel that it was their own fault.

Florence Wald didn’t fit well into that system. Partly inspired by Cicely Saunders, she knew there was a better way to care for the terminally ill and their families. But it was anything but an easy road. This book describes the personal, professional, institutional and societal hurdles she came up against. I am full of admiration for what she was able to do, even if some of the things they did back then were not quite the way we know to go about them today. As I read, I wondered whether she may have been a difficult person to work with — wanting to be in charge of everything — and I was a little saddened that she had been made to resign as Director of her beloved Connecticut Hospice after the first year.

I very much enjoyed this glance back 50 years, to the time when the principles of hospice and palliative care were slowly taking shape.

Emily K. Abel is a historian of medicine and public health and emeritus professor at the UCLA Fielding School of Public Health in Los Angeles.

(Roger Woodruff, August 2018)

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In response to the World Health Organization and Institute of Medicine definitions of palliative care, we are told that ‘certain professions and their treatment approaches (e.g., psychology) have been largely absent in most palliative care settings…’ and ‘omits reference to the potential role of psychologists.’ I think they are arguing that psychologists are important because they bring with them behavioral health strategies. Then I got a pointed hat for being one of those ill-informed or misguided people who consider palliative care synonymous with hospice. I am aware of the administrative (and artificial) distinction that exists in a single country (the USA), but in the rest of the world hospice and palliative care are hospice and palliative care, whether they are delivered in a hospital, the home, or an inpatient hospice or other care facility.

They go on to discuss the biopsychosocial model of care and state that ‘in palliative and end-of-life care behavioral and psychosocial care, fostering a sense of intersectionality and positive marginality may be therapeutically effective in healing.’ I wondered how that would be received at the weekly multidisciplinary palliative care patient review meeting. No one who works in palliative care is under any illusion about the importance of psychological matters, but I got a little annoyed with the editors’ list of reasons why psychologists were not a central member of the palliative care team. At least where I work, it’s simple: there’s not enough of them, they have a range of other opportunities, and none have shown interest in palliative care.

After some time doing relaxation exercises, I decided to ignore the clinical politics and set about looking at the other chapters, and was impressed and pleased. There is a good discussion of a range of interventions designed to enhance communication and decision-making, which provided a neat summary and assessment of each. Chapter 3 is about behavioral management of physical and psychological symptoms. I was familiar with most of the therapies, although Snoezelen was new to me; I was interested that acupuncture, massage therapeutic touch, and the like were included as behavioral therapies. Chapter 4 is a very good summary by William Breitbart and colleagues on meaning-centered psychotherapy for cancer patients with advanced and terminal illness. This is followed by an equally good chapter on dignity therapy by Harvey Chochinov and his colleagues. Chapter 6 is about cultural diversity and intersectionality, and I note that there is a second volume coming that deals with behavioral interventions within specific populations.

I am going to ignore the questions about why there are not more psychologists working in palliative care, as I cannot imagine a service turning down a psychologist willing to roll up their sleeves and work in clinical palliative care. However, I suspect that psychologists may remain under-represented, and that means that the rest of us (doctors, nurses, social workers, and others) will have to continue doing the best that we can with psychological issues. This book provides a reasonably detailed but succinct review of the problems and any member of the palliative care team will be better off for having read it.

(Roger Woodruff, August 2018)

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My first problem with this book was that there was no Preface or Introduction and, as I could only get an e-copy and there was no back cover, I was uncertain to whom the book was directed. Amazon.com came to my rescue with a back cover: ‘With the growth of neuropalliative care as a rapidly-emerging subspecialty in neurology, it is essential that clinicians develop core skills to offer high-quality, patient-centered care. This book captures the essence of palliative care in neurology…’

There are 49 chapters, each of which comprises a challenging case study followed by a discussion of all the palliative care aspects involved. The book is divided into six sections: Palliative Care Principles, Cerebrovascular Diseases, Neurodegenerative and Neuromuscular Diseases, Neuro-oncology, Pediatric Neurology, and Demyelinating Diseases. My impression was that the information about palliative care was well structured and would be useful to neurologists; I didn’t see anything that would surprise a palliative care worker, but it does have a (worthy) neurological slant.

I was concerned about the evenness of coverage across the spectrum of neurological disease. In the third section, five of the 13 chapters were about Parkinson’s disease, only one was about amyotrophic lateral sclerosis (hidden in a chapter about non-invasive ventilation), and Huntington’s disease didn’t get a mention. In passing, I noted that the authors used the term Parkinson disease whereas Parkinson’s disease, as it is commonly known, looks and sounds better — somehow feels a little more respectful. James Parkinson, as well as describing the shaking palsy, said that physicians must have ‘a sympathetic concern, and a tender interest for the sufferings of others.’ Sounds almost like palliative care.

The other thing missing is a discussion of euthanasia and physician-assisted suicide. In the discussions of such things, neurological conditions (motor neurone disease in particular) are always trotted out. Assisted dying will be the great challenge for neuropalliative care over the next decade.

I also wondered whether this ‘burgeoning’ new specialty of neuropalliative care needed to sort out its boundaries and priorities. I am a fan of the principles of palliative care being used for patients who do not have terminal illness — call it supportive care or whatever — but I was left a little speechless by the detailed description of palliative care aspects of management of the law student who had a post-concussive syndrome a couple of years earlier (now all clear), who felt she had to do better in her final exams, and had felt a bit brighter on some amphetamines her brother-in-law gave her (he had ADHD), so she turned up asking for her own prescription. She deserves expert care, from a psychologist or psychiatrist I would think, but for me that doesn’t fall within palliative care.

The contributors are all North American except for a pair from the U.K. and one from Australia. Dr. Robinson is from the Department of Neurology at the Mayo Clinic in Florida.

So where does that leave this book? It is not a textbook of neuropalliative care that provides an appropriately even coverage across the clinical spectrum. I decided it was a think-book that provided a series of examples of how to think through palliative issues in patients with neurological disease. As such it is very good. Palliative care people will learn some neurology and about the neurological approach; those with a neurological background will learn a considerable amount about palliative care.

(Roger Woodruff, July 2018)

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Dr. Charlie Corke is an intensive care specialist at Barwon Health in Victoria, Australia. He is no stranger to the advance care planning business and was the originator of MyValues, an online program to facilitate you completing your own plan (www.myvalues.org.au).

This book is written for a lay audience and I admired Corke’s ability to describe medical events and treatments in an easily understandable way. It is about the kinds of decisions that individuals, families, and medical personnel may have to face in a medical crisis. It is about how a person can start thinking about the end-of-life phase before they get there, and how they can make an advance care plan that will help family members and doctors make decisions on their behalf, if need be. There are lots and lots of little case histories to illustrate the points he is making.

He touches upon euthanasia and physician-assisted suicide, but prefers to focus on dysthanasia, or unpleasant dying. He doesn’t want to pay too much attention to euthanasia because ‘legal euthanasia accounts for less than 1 per cent of all deaths in those places where it has been permitted.’ Well, I have just reviewed the Dutch statistics for 2015, which show that euthanasia, physician-assisted suicide, and termination of life without explicit request combined went up from 2.7% in 1990 to 4.9% in 2015. And that’s not counting the (more numerous) people who died following intensified treatment of pain and symptoms, withholding or withdrawal of therapy, or continuous deep sedation, where those procedures were initiated with the intention of hastening death.

If you work in palliative care, you will enjoy reading this book and there are some important issues (particularly to do with communication) on which to reflect. And when the woman he was talking to went into ventricular fibrillation and he knew she had a signed do-not-resuscitate order? Yes, I was on the edge of my seat as he described his split-second assessment of all the issues, including the meaning of the order to the patient.

Given the audience for whom it is intended, and the ground covered, I think this book is excellent.

(Roger Woodruff, July 2018)

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This book is about helping hospice clinicians — nurses in particular — meet quality, coverage, and reimbursement standards and requirements in daily practice and operations, and in the documentation of activities.

The first chapter provides an overview of hospice and palliative care and how an organization should function, and I got a sobering glimpse of the myriad rules and regulations that have to be adhered to in the U.S. system.

The second is about the importance of documentation, which is described as the key to issues of care, coverage, compliance, and quality; that is, to say nothing about getting reimbursed.

Chapter 3 is about doing an initial assessment, making a plan of care, and performing ongoing care. The last chapter, which takes up more than half of the book, is about different hospice diagnoses and guidelines for care. There are sections on: a) Alzheimer’s Disease and Other Dementias; b) Bedbound, Coma, and Skin Care; c) Cancer; d) Cardiac and Cerebrovascular Accident Care; e) Liver Disease Care; f) Neurological Disease Care; g) Pulmonary Care; and h) Renal Disease Care. Each of the diagnoses/guidelines are then systematically discussed under eight headings: 1) General Considerations; 2) Eligibility Considerations; 3) Potential Diagnoses & ICD-10-CM Diagnostic Coding; 4) Safety Considerations; 5) Skills and Services Identified; 6) Patient, Family, and Caregiver Educational Needs; 7) Specific Tips for Quality, Safety, Eligibility, and Reimbursement; and 8) Quality Metrics. Some of her descriptions of providing care for patients with non-cancer diagnoses provided interesting insights about our approach to the care of such patients.

In the United States, this book would be helpful in dealing with the myriad rules and regulations and staying sane. Outside the U.S., it might be helpful if you were setting up a service or doing a major audit of your service.

(Roger Woodruff, July 2018)

CD Review

Healing Light is described as, ‘Since Biblical times, music has been an important part of Jewish life, integral to religious and cultural experiences. Healing Light is a collection of traditional Jewish music including folk, klezmer, and liturgical songs and is meant to provide comfort to those who are sick, shut-in, or in residential care.’

Forever Love ‘covers some of the greatest love songs of all time. These songs express the feelings we have for the ones we love and draw us into the experience of being in love.’

The previous discs in this volume, all favourably reviewed in this column, were: Peaceful Presence, Country Road, Old Chestnuts, and Broadway Melodies. As with those discs, the music is slow and soothing, and at the same time conducive to reflection and recollection. This music would be appropriate in any palliative care setting. Together, the six-CD package retails for $CAD106.95.

(Roger Woodruff, July 2018)

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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.

Note for authors and publishers:
If you wish to have your book reviewed, please send to:

Dr. Roger Woodruff
IAHPC Bookshop Editor
210 Burgundy St, Suite 9
Heidelberg, Victoria 3084
Australia

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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