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
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Peter Morgan-Jones, Rod MacLeod, Prudence Ellis, and Jessica Lynch
HammondCare Media, 2018
232 pp, softcover
RRP $AU39.95, Amazon.co.uk; Amazon.com $US39.95
Available from publisher here ($AU39.95 + shipping; Overseas orders $AU36.32 + $AU7.23 shipping).
Take one internationally renowned chef (P M-J), blend with a palliative care physician (RM), mix in a speech pathologist (PE), and, lastly, add a dietitian (JL), then serve with side dishes of a sprinkle of occupational therapy (Kate Needham) and some mouth-watering photography (Matt Jewel). You’ll have a cookbook for end-of-life care.
The first three chapters (by the three co-authors) provide a good description of the clinical problems associated with food and feeding, including the psychosocial aspects, in palliative and end-of-life care.
The recipes (126 of them) make up three-quarters of the book. I have to declare that I am totally unqualified to judge these, but they looked to be well set out and within the scope of anyone with ordinary cooking skills to do at home. The recipes are organized around tastes and textures rather than breakfast, lunch, and dinner. Each is accompanied by information regarding texture and for which group of patients it would be suitable. A lot of them sounded and/or looked delicious. I particularly admired the array of flavoured airs and mists to allow taste sensations for people who are nil by mouth. Anyone for a Guinness air or a Christmas pudding mist?
So, why does a top-flight chef become Food Ambassador and Executive Chef for HammondCare (Australia), an independent (nondenominational) Christian charity that focuses on aged, end-of-life, and dementia care? A little exploration found some interesting quotes. ‘I've cooked for the Royal Family, but that is not my greatest achievement. My greatest achievement is getting a person who is living with dementia and struggling with meal-times to turn this around and enjoy a meal.’ And ‘the job is rewarding because you know you are “giving”… In restaurants, we feed someone’s ego. Here we are feeding for necessity. It’s just pure essence.’
And Josino? He worked as Morgan-Jones’ off-sider in the famous Bennelong Restaurant at the Sydney Opera House 20 years before, but was now dying. When they visited him in hospital, Josino complained that the food he was given looked and tasted awful, and begged to be allowed to choose what he wanted to eat. When they asked, he said he wanted lobster! Plans were made to procure and prepare lobster for him, but the nursing staff deemed it inappropriate and would not allow it. Josino was in a coma two days later and died without getting his wish.
If you work in palliative care and have carers wanting help to know how to feed the people they are looking after, this is the book to recommend. I would extend that to include patients recovering from chemotherapy. If you work in an institution where the food is as described by Josino, then here is a book that says it can be changed. If you believe that eating and drinking are important for your patients’ quality of life, you will enjoy this book. I enjoyed it because of its originality and I felt that the almost passionate belief in the benefits of enjoyable eating and drinking was infectious.(Roger Woodruff, October 2018)
256 pp, hardcover
Also available: ebook
RRP $US25.99 £19.71
The dust jacket told me Tisdale is a writer from Portland, Oregon. After glancing at the Table of Contents, I sneaked down to the very last section of the book — Appendix 4: Assisted Death. A little to my surprise, I was informed that death with dignity was a more accurate term than assisted suicide. There was no mention of the six Oregon patients (of about 300) who regained consciousness, and whose subsequent course was anything but dignified. That a survey of American oncologists reported that physician-assisted suicide (PAS) failed in 15% of cases is overlooked. The wholesome practices in the Netherlands are briefly described, but not the report that since they allowed euthanasia and PAS about 18,000 people have suffered ‘life termination without request.’ I also read that PAS was now legal in Australia, which thankfully it is not; it is only my home state of Victoria that plans to allow PAS from 2019, sanity having prevailed elsewhere.
I returned to the beginning of the book with a little trepidation. But I had to do a complete reassessment. Tisdale is a nurse who has worked in oncology and still works a few days a week in a palliative care program. She is also a Buddhist practitioner and teacher, leading workshops about preparing for death from a Buddhist perspective.
This is a book about how you can get ready. ‘Read this travel guide and follow the maps and find a place where you can see what happens next — what will, like it or not, happen to you in time.’ She talks about the resistance to talking about dying, but explains that anxiety about death is part of being human. I enjoyed her discussion about what is a good death and the enormous variation in what different people might regard as a good death. There is a good description of the dos and don’ts when you are with a dying person — what to say and not to say, what to ask and when — from everybody’s perspective: the patient, their loved ones, caregivers, and health care professionals. She discusses individuality in response and interpretation of what is going on.
There are chapters on the last months, the last weeks, the last days, and the last moments. I thought there were some wonderful quotations from the dying and from the deathbed, complete with explanations.
Then there is what happens afterward. Her discussion of human grief is very good; intimate anecdotes from her own personal and professional experience are interweaved with stories from history and from other cultures and traditions. ‘Grief is the story that must be told over and over… Grief is the breath after the last one.’
The other half of what happens after — what to do with the body — I found a bit over the top. Her description of how to deal with, or control, the funeral industry (advice with which I agree) is colored by her own experiences after her mother’s death. But did I want to know about possible climate change effects of cremation? Did I need to be told about the biodegradability of different coffins? Should I go for the cardboard coffin and mushroom suit that speeds up decomposition, and also breaks down and neutralizes toxins from the human body?
The book is suitable for the lay reader, except for a word here and there, such as akathisia. It provides an accurate and compassionate description of things to do with death and dying, including an appendix to help preparing a death plan and advance directives. On reflection, the pro-euthanasia vibes that I got from Appendix 4: Assisted Death seem at odds with the person who wrote the rest of the book.
(Roger Woodruff, October 2018)
Kimberley C. Paul
KCP Ventures, 2018
190 pp, softcover
Also available: ebook, hardcover
RRP $US35.00 (Kindle $US10.28) £30.99
Bridging The Gap aims to empower ordinary folk to design their end of life and death so as to reflect their values, likes and dislikes, and personality.
With a background in the New York entertainment industry, Kimberley Paul spent 18 years working in the Wilmington, North Carolina-based Lower Cape Fear Hospice; she collected a degree in social work (BSW) somewhere along the way. It sounds as though she had more of an administrative role than being responsible for day-to-day patient care, but nevertheless had a lot of patient contact.
The book is a series of personal stories and the life lessons she learned while working with hospice patients, which I enjoyed. The story of the power and permutations of forgiveness — of the man who was asked for forgiveness by the daughter of the woman he had murdered 40 years earlier, so that she could move on — was intriguing. And the one that reminded me how challenging end-of-life care can be, when she sat down with her own beloved grandmother with ‘Begin the Conversation’ papers, thinking that convincing her to accept hospice care would be easy. But Granny didn’t want a bit of formal advance care planning, kept watching her TV game show and told her, ‘You kill people at the end of life… You overdose them! That’s what hospice is.’
There is an appendix listing a lot of useful resources, particularly about advance care planning.
This book should certainly be on the list of books you recommend to anyone contemplating advance care planning. It will definitely appeal to some, but there is a great range of attitudes and intellect out there. I got the impression that Kimberley Paul was no slouch in things to do with advertising and communication, so perhaps Bridging the Gap will have wider appeal.
I was very impressed with some of the other things she has done in this field. She was creator of the ‘Begin the Conversation’ campaign (see www.begintheconversation.org) in 2008, and was the driving force behind the program until she left Lower Cape Fear Hospice in 2016. Now, under the banner ‘Death by Design’ she has created a string of podcasts (see www.deathbydesign.com). Take a look.
(Roger Woodruff, September 2018)
Mari Lloyd-Williams (ed.)
Oxford University Press, 2018
256 pp, softcover
Also available: ebook
RRP £28.82 $US46.95
This is the third edition of Mari Lloyd-Williams’ Psychosocial Issues in Palliative Care. My copies of the previous editions have long been donated to the palliative care department at the university, but I sense that the current edition embraces a significant change in emphasis from professional to community care.
I read about the public health end-of-life movement, emphasizing the social dimensions of care and including the concept of compassionate cities. I was told it was time to grasp the opportunity for change and ‘free psychosocial palliative care back into the community’ (from wherever it had been over-professionalized and, worse still, over-medicalized). There is a good chapter on the provision of psychosocial care at the end of life for the marginalized — people with mental health problems, those with intellectual disability, those in prison, and the homeless — but what about guaranteeing the availability of good psychosocial care for Mr. or Mrs. Average with a terminal illness? The argument seems to be that professional organizations (including their volunteers) have insufficient resources to meet demand, so we’ll make the community responsible instead; but the resources of communities are also finite and are likely to be much less well organized. I think I failed to convert.
There are informative chapters on dignity therapy, the provision of care for the demented, the psychosocial care of families in palliative care, and spiritual care. The chapter on self-care for palliative care workers has been omitted in this edition.
The chapter on depression provides a good overview, but doesn’t address the questions faced by ordinary palliative care doctors and nurses. How do you distinguish depression from the ‘normal sadness of terminal illness’ that pro-euthanasia groups reassure us about? Should people with depression be permitted to enlist for assisted dying? Does successful treatment of depression reduce the wish to die? And there’s the business about how long it takes for traditional antidepressants to work when time is so short, begging the question of whether it’s worthwhile. My understanding is that besides counteracting fatigue, rapid-acting methylphenidate was reported to have antidepressant activity in a Cochrane review, but is not mentioned here.
This book provides a reasonable review of psychosocial palliative care, and it certainly emphasizes the social aspect of that care. But the sociological stuff about wresting things back from the professionals, compassionate cities and all that, failed to excite me. That said, yes, a copy of this book should be on the palliative care unit’s bookshelf.
(Roger Woodruff, October 2018)
Rebecca S. Allen, Brian D. Carpenter, and Morgan Eichorst (eds.)
188 pp, hardcover
Also available: ebook
RRP $US140.00 £115.00
The goal of this book is to provide ‘information on the context of behavioral and psychosocial mental health and wellness interventions in palliative and end-of-life care.’ It continues the theme of the first volume (reviewed in the September Newsletter) that attention to mental and behavioral health within palliative and hospice care has lagged behind the physical and spiritual domains, and the potential importance of psychologists and the biopsychosocial-spiritual model of care. I again felt an undertone about the need for more psychologists in the palliative care team but, whilst I would be happy to employ a psychologist if one were available, they do not own the biopsychosocial-spiritual model of care.
The book is divided into two sections. The first describes behavioral interventions within three specific disease contexts: HIV/AIDS, serious mental illness, and dementia. The second part focuses on the social and cultural contexts of behavioral interventions regarding three aspects of palliative care: ethical considerations, diversity in family bereavement, and policy issues in psychosocial care.
I was startled at the beginning of the chapter on HIV/AIDS when I was told how much things had changed since we learned how to ‘treat and cure’ HIV. Wow! Neither WHO nor I were aware that a cure for HIV existed. Then they fudged it a bit and called them functional cures. Wouldn’t ‘good clinical control’ or something similar be more honest and accurate? And the figures they use for deaths from HIV/AIDS in the USA are corrupted by the exclusion of deaths from HIV-related complications and comorbidities. Their overview of the palliative care-type needs of patients with HIV/AIDS in the USA, particularly the psychological aspects, is reasonable. Their description of the palliative care needs appropriately emphasizes the need for continuing palliative support in the longer term, but plays down anything to do with death and dying, implying that it is pretty uncommon now; yet WHO says that 940,000 people died from HIV in 2017. Their description of HIV/AIDS in the rest of the world is poor. They mention that 36.9 million people had HIV/AIDS in 2017, but not that only about 50% had access to antiretroviral therapy.
When I moved to the chapter on serious mental illness (SMI), I had trouble distinguishing between the management of patients with physical disease that qualified them for palliative care and who subsequently developed SMI, and those with potentially life-limiting SMI. The chapter from the UK on dementia was better organized and showed how palliative care and person-centered dementia care overlap and can be integrated.
The section on ethical considerations provides interesting discussions on things like competency, palliative care literacy, and shared decision-making. Then I stumbled into the section on Death with Dignity. I abhor the use of that term as a proper noun, because I know that natural dying can be most dignified and that assisted dying may be anything but dignified; they choose not to mention the Dutch report that 18% of attempted assisted suicides had to be ‘finished off’ with euthanasia by injection, or the Oregon patients who regained consciousness and whose subsequent course sounded horribly undignified. It was not clear to me why there was zero discussion about the ethics and morality of assisted dying, or the inevitable consequences of such programs, such as slippery slopes and life termination without request. The chapter on bereavement provides a summary of the attitudes to death and bereavement among different cultural and religious groups. The policy chapter is mainly about the contribution of psychologists to the delivery of psychosocial care.
Although I have picked on a few glaring omissions, this book provides a reasonable overview of some of the psychological aspects of palliative care. And unless there is an outbreak of psychologists wanting to work in palliative care, the management of psychological problems will continue to fall to the rest of us (doctors, nurses, social workers, and others), and this book would not be out of place on the palliative care unit bookshelf.
(Roger Woodruff, September 2018)
Laurene Graig and Joe Alper (rapporteurs)
National Academies Press, 2018
RRP $US55.00 £30.98
Available as: free download
This is a report of a workshop conducted by the National Academies in Washington, D.C., in April 2017.
I applaud the goal. The inclusion of the principles of palliative care into the care of patients with serious but non-terminal illness has been talked about for at least the last 30 years, but progress has been very slow or essentially non-existent. Here are a myriad of thoughts and ideas about how things might be moved forward from a range of different people involved in the field, although I was not certain what the CEO of the organization committed to advocacy of assisted suicide was doing in the henhouse. If you work in health care planning, this book will not provide all the answers but it will give you a lot to think about. And it’s free.
I had trouble with the opening section, which I felt described the inclusion of the principles of palliative care into the care of patients with serious but non-terminal illness as new and cutting-edge. As noted above, it has been talked about for decades and the British introduced it as ‘supportive care.’ However, we are not told exactly what the speakers said, and I suspect this may just be a contextual slip on the part of the rapporteurs.
As well as lots of ideas, there are some interesting reports from innovative programs. But I did not see much discussion of the stumbling block attributable to physicians themselves. If you go to the oncology clinic and suggest some extra palliative care-type care for patients with serious but not necessarily terminal illness, you will be shown the door and asked not to come back. They would regard their management as adequate in every way, and they do not want ‘interfering’ people talking to their patients about quality of life, patient’s choices, and things like that. And you would get the same answer in the other clinics. In addition, they cringe at the very thought of the words ‘palliative care’ being heard in their clinic, because everyone knows that ‘palliative care’ is for people who are about to die. Isn’t it?
So as well as all the societal, fiscal, and institutional barriers, there are some professional hurdles to overcome. The professional barriers are very much alive and well where I work, and my experience of my brother’s treatment tells me they are also alive and well in the USA. Treated in one of that country’s most reputable cancer hospitals, he received zero palliative care-type support when he had a ‘serious’ illness and, until I had a hissy fit, zero palliative care when he was dying.
(Roger Woodruff, September 2018)
Roger Woodruff, MD (Australia)
Dr. Woodruff is a Lifetime Member of the IAHPC Board and Past Chair. His bio may be found here.
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