2017; Volume 18, No 10, October

IAHPC Book Reviews

By Dr. Roger Woodruff, IAHPC Reviews Editor

Palliative Care Book of the Month

Ken Hillman is Professor of Intensive Care at the University of New South Wales in Sydney and is recognized as a pioneer in the introduction of the Medical Emergency Team; I, for one, have to admit that the implementation of ‘MET calls’ in the hospital where I worked had a very positive effect on patient care.

In his introduction, Hillman is upfront. ‘This book does not present the Walt Disney version of ageing and dying; it is not about how to live longer, how cancer can be cured or how to avoid dementia. Rather, I will be straightforward in my description of ageing, its inevitability and its obvious relationship with death and dying.’

The first chapter focuses on the death of his grandfather and his mother, and comes to the conclusion that ‘dying in the elderly has become hijacked by doctors, despite the fact that modern medicine has little to offer. Doctors are programmed to make you better, not to recognize the inevitability of ageing and dying. They rarely feel comfortable talking to you honestly about your prognosis, nor do they empower you to make choices about how you would like to spend the last few months of your life.’ How true is that.

The chapters ‘Ageing is not for the weak’, ‘Apoptosis’ and ‘Cognitive decline’ discuss the clinical truths and science of normal ageing.

The chapter ‘Because we can, we do’ is a litany of inappropriate major surgical procedures or admission to the intensive care unit (ICU) (or both). The chapter ‘Groundhog Day’ is a wonderful bird’s-eye view of an ICU ward round. The first six patients are elderly and rapidly nearing the end of their lives, with or without serious co-morbidities such as severe dementia, and the procedures and/or thinking that put them in ICU were obviously flawed. The day is saved by the patient in Bed 7 – a seventeen-year-old with Guillain-Barre syndrome – a patient worthy of being in ICU.

The next chapter is about his sister-in-law’s terminal illness with motor neuron disease. He seems impressed by the hospice services she received (in the state of Oregon).

Hillman goes on to discuss how elderly frail patients might be better assessed and their treatment more appropriate, living wills and advance care planning, the concept of futility, all amidst the problems related to the medicalization of ageing and dying and grieving. And a lot more.

I enjoyed reading this book and a lot of the problems he points out are so true. Fixing them might be a little more difficult. Hillman chides the doctors who recommend that it should be done because it can be done, without considering whether the procedure will be of any overall benefit to the patient; to that I would add others who recommend active treatment because they are either not able or are unwilling to have that conversation. If you work in palliative care, this book will give you lots to think about – particularly the role of palliative care, or at least the principles of palliative care, in the management of the elderly, perhaps increasing their chance of dying at home and not in ICU.

Roger Woodruff, September 2017.

Other Reviews

This is a collection of 34 stories from hospice/palliative care told by a very observant Canadian palliative care nurse. The primary theme is about ‘living until you die’ – to live each moment until that day. But there is so much more – it’s about the personal and professional satisfaction of looking after terminally ill patients and their families, it’s about getting to know a patient as a person and not by the disease they carry, and it’s about their hopes and priorities and unfinished goals.

Gatschene says the book is for everyone who has experienced the loss of a loved one. But I would think it would be just as helpful for a person in the process of caring for someone who is terminally ill. The stories are brief and simply told, making it suitable for a wide audience. If you work in palliative care, you will enjoy these stories, which say a lot about the warmth and value of good palliative care.

I was struck by the remarkable difference between what is in this book and the other stories coming out of Canada. On the one hand are the manifest benefits of holistic and loving palliative care. On the other is the Canadian pro-euthanasia advocate, Kathryn Morrison, demanding that any palliative care service that declines to perform medically assisted dying and euthanasia should be ‘outed’ and publicly named, presumably as a preliminary to having their funding withdrawn. Frankly, that disgusts me. I note that this year she is also campaigning for the Canadian law to include ‘mature minors.’

Roger Woodruff, August 2017.

Victoria Sweet decided that she needed a part-time job, so that she had time to pursue her interests, and perhaps even some postgraduate work, in the medicine of the twelfth century German abbess and mystic, Hildegard of Bingen.

To this end she took a short-term (and part-time) appointment at San Francisco’s Laguna Honda Hospital, but ended up staying for more than twenty years. An enormous place, set on more than 60 acres and with over 1,100 inpatients, Laguna Honda Hospital Is described as a descendent of the Hôtel Dieu that accommodated the sick and poor in the Middle Ages. It is described as the last almshouse in the country – anyone who needed extended medical care ended up there. Here, Sweet found she was able to practice lower-tech, slower, more human medicine. She says it was the patients who slowly revealed to her the true face of medicine – that it was not just about the body as a machine to be repaired, but more about a garden to be tended. This book is essentially about her hypothesis that Slow Medicine provides as good a medical outcome as does Modern Efficient Health Care, while being less expensive and more satisfying for patients, families and staff. And, with the patients she describes, she makes an excellent case.

The intermingled saga of how a long stream of experts set about dragging Laguna Honda Hospital into the 21st century, determined to turn it into an efficient modern ‘health care facility’, is sad to the point of being sickening. Innumerable lawsuits, a 10-year investigation by the Department of Justice, the squandering of untold millions on useless reviews and projects, all left me cold. As Sweet says, all it did was to slowly rob the place of its medical magic – the value of caring for the body and soul.

Along the way, we hear a little about Hildegard. I wished there had been a lot more, because she is far more interesting than the morons and technocrats ‘modernizing’ the hospital. A German Benedictine abbess who lived from 1098 to 1179, she is variously described as a writer, composer, philosopher, Christian mystic, and visionary polymath. She is thought to have received no formal education, but left three volumes of visionary theology, a collection of liturgical music, and two volumes on natural medicine and cures. Sweet describes the year she spent in Switzerland, further researching Hildegard’s medicine. And I enjoyed Sweet’s description of walking the medieval pilgrimage to Santiago de Compostela in Spain.

The attitude to clinical medicine expressed here was music to my soul, although I worry it may be a sign of age. I think that people who work in palliative care will enjoy this book as there is considerable overlap between Sweet’s Slow Medicine and what we do in palliative care. The underpinnings of the old Laguna Honda Hospital – hospitality, community and charity – are unlikely to ever be a feature of any self-respecting efficient modern healthcare facility, which to me is a significant loss.

Roger Woodruff, August 2017.

The Introduction informed me that this book would change the way I approach my work with all patients, not just those who are LGBTQ; I thought that highly improbable. The next page says I must make an active choice so that all patients are welcome and treated with dignity and compassion; I didn’t get it ­– I have done that for the last 30 years or more, and that includes a number of LGBTQ patients. But then came the hook! Unless I made a conscious choice to engage in LGBTQ-inclusive practice, I would be guilty of ‘choosing to exclude LGBTQ people from receiving high-quality care.’ I thought that was nonsense.

There follows a list of recent palliative care textbooks, which either did not have enough detail about treating LGBTQ people, or had stand-alone chapters on LGBTQ that Aquaviva feared might not be read; I was getting a feeling that Ms Aquaviva was hard to please. The crowning insult was to have LGBTQ included in a list of ‘special populations’, sandwiched between ‘prison inmates’ and ‘individuals with substance use disorders’.

Chapter 1 is about self-awareness and communication and describes the required skills according to the mnemonic CAMPERS (clear purpose, attitudes and beliefs, mitigation plan, patient, emotions, reactions, and strategy), which provides a reasonable but basic plan for patient care in palliative care, assuming you have unlimited time for reflection and cogitation before, during, and after ‘interacting’ with the patient.

Chapter 2 is about sex, gender, sexual orientation, behavior, etc; I think it is meant to familiarize you with the lingo. I am old enough to remember that ‘queer’ used to be a very derogatory word. Wikipedia tells me the term has been resurrected since the 1980s, but the description of what it is now meant to mean is a gobbledygook of made-up words that I think are meant to express the difference, importance or unique nature of a person’s gender. I note Australia lags behind New York – we have LGBTI (for Intersex), but not queers. The table of gender-neutral pronouns caused me to grind my teeth.

Chapter 3 is meant to be about barriers to care. But most of the chapter is a long list of the prejudices and discrimination (past and present) suffered by the LGBTQ community, and includes a list of the names and ages of all 49 people killed at the LGBTQ nightclub in Orlando in 2016. I thought this was socio-political stuff, rather than a discussion about the optimization of clinical care. I did not feel that being instructed how I should reflect on this tragedy was appropriate in a clinical textbook.

Chapters 4-6 are about patient interviews, family meetings, and identifying goals of care. The care advocated was reasonable and evidence-based, if a bit over-regimented. Nothing jumped off the page to alter my approach to LGBTQ patients.

Chapter 7 (ethical and legal issues), Chapter 8 (patient and family education), and Chapter 9 (about life completion and closure), did not seem to add anything new to the practice of palliative care. There was much said about how difficult these issues were for LGBTQ patients, but to me it didn’t seem much different to any other human being.

I felt the lack of any discussion about physician-assisted dying and euthanasia was a glaring omission. Talking to patients about such things will be one of the major challenges in clinical palliative care over the coming years. Some information on attitudes to assisted dying within the LGBTQ community would have been useful.

Chapter 10 is about how to assess an institution’s bridge to LGBTQ individuals. But by then, I had run out of steam.

This book is all about how terribly important LGBTQ patients are and is advocating that the organizations responsible for accrediting palliative care professionals and institutions be required to include specific LGBTQ content. But that would only be reasonable if the same is done for the other (twenty or so) ‘special populations’, including ‘prison inmates’ and ‘individuals with substance use disorders’.

So, where does that leave this book? If your palliative care service cares for a significant number of LGBTQ patients, this would be a useful book to have on the library shelf. I tired of sorting the socio-political and historical stuff from the clinical palliative medicine; the former is important, but not in a clinical textbook.

Roger Woodruff, August 2017.

This is a well-organized introductory text about palliative and end-of-life care for undergraduate nurses, other healthcare professionals, and medical students. There are eight chapters that cover life and death, communication, grief and bereavement, cultural issues, rehabilitation, ethical issues, palliative care in the intensive care unit, and legal aspects. Each chapter is prefaced with the NMC (Nursing & Midwifery Council) Standards for Pre-registration Nursing Education and the Essential Skills Clusters that are involved, and there is also a section on the aims of the chapter. The text is interspersed with case studies and suggested activities. A brief outline of the answers to the activities is provided at the end of the chapter along with lists for further reading and useful websites.

I thought this book provided reasonably good cover of the topic and was set out in an undergraduate-friendly manner. It would be quite appropriate for undergraduate nurses and other allied professionals; it would also be appropriate for medical undergraduates but will not be offered to them or read by them because the word ‘nursing’ is on the front cover and at the beginning of every chapter.

I wish someone would produce an introductory text on palliative care with the words ‘for Medical Students and Doctors’ (or something similar) on the front cover.

Roger Woodruff, August 2017.

In his introduction, Epstein explains ‘I believe that the practice of medicine depends on a deep understanding between clinicians and patients, and that human understanding starts with understanding oneself. This book is the product of a career in medicine seeking opportunities to know myself better as a clinician and to help others do the same – ultimately to make health care more mindful, attentive, and humane.’ Worthy, but lofty goals.

The book begins with some epiphanous moments when Epstein was a third-year medical student and realized the difference between what went on in the mind of really excellent clinicians compared to the ones who were just very good.

Wow! When I was a third-year medical student, my preoccupations were mainly with girls and sport. After he graduated, he ended up training and working with George Engel, one of the proponents of the ‘biopsychosocial’ approach to care. Epstein’s subsequent work has confirmed there is substance to his medical student visions.

So this book is about a better way to practice medicine ­– ‘some physicians are making choices to reacquaint themselves with the heart of medical practice. By looking inward, they are expanding their capacity to provide high-quality care.’ I thought that had to be an oversimplification.

With a mixture of Zen Buddhism and psychology, Epstein describes the four foundations of mindfulness – Attention, Curiosity, Beginner’s Mind, and Presence – and discusses the evidence that doctors who employ mindfulness as part of their practice are more effective and less stressed.

I was interested in this book because the carer-patient relationship is crucial in palliative care and I think there are recommendations in this book that would be helpful to somebody looking to improve their clinical approach. However, I found the lexicon difficult, and terms such as inattentional blindness or inattentional deafness, shared minds or shared presences, bottom-up attention and the practice of stillness, were a distraction. The revelation that the curious doctor performs and feels better is hardly earth shattering. And sometimes I felt he was advocating clinical actions that I thought were taken for granted in good medical practice. For example, on occasions he chose to accompany the patient from his office back to reception (which is described as ‘compassionate solidarity’); it never occurred to me to do otherwise.

Roger Woodruff, August 2017.

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

Note: Review copies become property of IAHPC and are not returned to the author. Only palliative care related books, which are previously approved, and which have an ISBN, will be reviewed. Due to the large number of requests, we can’t provide exact dates of when books will be reviewed.

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