2013; Volume 14, No 8, August
IAHPC book reviews
By Dr. Roger Woodruff
Palliative Care Book of the Month
THE HASTINGS CENTER GUIDELINES FOR DECISIONS ON LIFE-SUSTAINING TREATMENT AND CARE NEAR THE END OF LIFE. 2e
Nancy Berlinger, Bruce Jennings, Susan M. Wolf (Eds)
Oxford University Press, 2013
240 pp
ISBN 978-0-19-997455-9
RRP $US39.95 £27.50
Reports and publications from the Hastings Center have been influential in shaping and defining our professional attitudes to ethics of clinical care, particularly in regard to euthanasia and physician-assisted suicide (PAS) and other matters related to end-of-life care. This second edition of their Guidelines is very welcome and provides a clear and reasoned approach to the different clinical scenarios.
The book is divided into three parts. The first is about the ethics of good end-of-life care, the education competencies required, the organisational systems that should be in place, as well as socio-economic and legal factors. The second part deals with guidelines on care planning and decision making, including the decision-making process and guidelines for pediatric patients, care transitions, and for institutional policies. The third part is about communication in the support of decision-making and care. In addition to the straightforward cases, it includes interesting sections on supporting the decision-maker when loved ones disagree, how to approach a dying patient who has an implanted defibrillator, and the institution or withdrawal of a range of treatments from cancer chemotherapy to dialysis; it also includes a good discussion on the relatively new topic of palliative sedation.
I didn't find anything dramatically new or controversial; in fact, I didn't find anything with which I disagreed. But it's nice to have it all in one place. It's a pleasure to read as the material is logically sequenced and each statement or recommendation is justified—you feel each bit has been thought through and care taken to write it clearly. If you have an interest in the ethical underpinnings of what we do, this book is for you. If you teach about ethics and clinical practice, or are responsible for it at your institution, this is required reading.
Other Reviews
PALLIATIVE ASPECTS OF EMERGENCY CARE
Paul De Sandre and Tammie E. Quest (Eds)
Oxford University Press, 2013 (Oxford American Palliative Care Library, OAPCL)
134 pp
ISBN 978-0-19-989561-8
RRP $US34.99 £22.50
Whenever I am told that a palliative care patient of mine is being taken to the hospital Emergency Department (ED), I worry whether they might be subjected to inappropriately intensive investigation and treatment. That's probably unfair on the ED physicians, who work in a fast-paced, high-stress environment, trained to save lives (which they do well), but symptomatic comfort care is sometimes not on their treatment algorithms.
So it was a pleasure to read this book, which taught me a number of things. There is a move afoot (at least in the USA) to allow trainees in Emergency Medicine to also train in Palliative Medicine, allowing the caring of the latter to be mixed with the technological expertise of the former, and probably unthinkable 25 years ago. As outlined in this book, there is a push for more appropriate treatment (in terms of holistic palliative medicine) for patients with life-limiting disease, as well as identifying the much larger number of patients who present to the ED who are in need of/eligible for palliative care services. This all sounded like good news to me.
The book is primarily directed at ED physicians and has chapters on prognostication, palliative care assessment, cancer emergencies, malignant and non-malignant pain, emergency symptom management, spiritual suffering, and the importance of communication. The chapter that I thought was missing would have some guidelines to help the ED physicians (not the ones co-trained in palliative medicine) cope with the trauma of being more up-front with palliative care type patients who were dying with chronic and life-threatening diseases.
Hopefully this book will be a useful resource and inspiration for people who work in ED. I would also recommend it to trainees in palliative medicine, as it provides a good picture of what is happening on the other side of the wall.
TRANSFORMING THE CULTURE OF DYING
The Work of the Project on Death in America
David Clark
Oxford University Press, 2013
284 pp
ISBN 978-0-19-931161-3
RRP $55.00 £35.00
George Soros funded it. Kathy Foley directed it. So how did the Project on Death in America (PDIA) (1994-2003) perform? Very well, I think.
This thoughtful and detailed history by David Clark (who is a bit of an expert on things to do with hospice and palliative care) details the history and achievements (and problems) of PDIA. He had access to a library of documents as well as personal contact with many of the people involved and his account is well-written and interesting. The initial deliberations about how to stage the project in order to make a difference must have been very difficult, but their decision to focus on scholars bore fruit. There are chapters about the birth of PDIA, as well as an exploration of the meaning of death in American society, the experience of caring, innovations in service development, barriers (especially in underserved communities), and ethical, legal and financial issues. This book is written about America, but many of the issues faced by PDIA are common to many developed countries. Reading about all these issues provides an interesting summary of what is wrong with our attitude to death, both as a profession and as a society.
PDIA worked alongside and in cooperation with a number of other funding organizations, and it is difficult to credit any of the major advances in palliative care in the USA during the 9 years that PDIA was operating to a single source. But PDIA seems to have opened eyes and raised the bar. ‘From the beginning, PDIA focused on the vulnerable and voiceless individuals who had, in a sense, been abandoned by the health-care system…PDIA took the view that palliative care can enhance the field of medicine and can demonstrate the importance of both competence and compassion in modern health-care practice.' Looking at the major advances in palliative care in the ten years since PDIA closed, it is difficult to not see the enormous influence PDIA had on the field. There may still be a long way to go, but well done Kathy Foley and PDIA.
HOW TO BE A FRIEND TO A FRIEND WHO'S SICK
Letty Cottin Pogrebin
Public Affairs, New York, 2013
272 pp
ISBN 978-1-61039-283-9
RRP $US24.99 £16.45
An accomplished journalist (founding editor of Ms. magazine and with several books to her credit), Letty Pogrebin was diagnosed with breast cancer at the age of 70 and became interested in people's responses to serious illness during her (interminable) time spent in hospital waiting rooms. Here are hundreds of anecdotes gleaned from her own experience and from interrogating (it sounds like everyone) other patients in the waiting room, described from both the carer's and the patient's viewpoints. These are distilled down into very useful lists of do's and don'ts. The lists—Ten Commandments for conversing with a sick friend, Twenty Rules for good behavior while visiting the sick, Ten Tips for good giving, etc, are wonderful. From a professional perspective, we see it all the time—the inept visitor or the one who doesn't show up, the inappropriate gift or the one that's missing. Unless you stop to think about it (e.g. Why am I going there? What is my role? What should I take?) it's easy to make a mess. Pogrebin's last two chapters, about death and dying, and mourning the deaths of friends' children, are equally up-front.
Pogrebin has pulled together all of the do's and don'ts of being supportive to people with serious illness or who are dying and I noticed no obvious omissions. Also to her credit, she has written it in a readable style, with a touch of humor. But the information and messages in this book are too important for that. There needs to be an appendix listing her do's and don'ts in various situations—one-line entries with page numbers referring to the longer description in the text—to which people in need can refer and read about the circumstances that apply to them. Then it would be a most useful reference/self-help manual.
UNTIL I SAY GOOD-BYE
My Year of Living with Joy
Susan Spencer-Wendel
HarperCollins, 2013
362 pp
ISBN 978-0-06-224145-0
RRP $US25.99 £16.99
This is a first-person response to ‘What would you do if you only had a year to live?' Aged 44, a successful journalist, happily married with three children, Susan Spencer-Wendel developed amyotrophic lateral sclerosis (motor neurone disease). She gives a good account of the personal issues around diagnosis and, against a background of increasing physical incapacity, relates how she went about trying to enjoy each day and at the same time leaving meaningful memories for her children. Her bucket list included seeing the aurora borealis, meeting her biological mother (and then visiting Cyprus to trace the memories of her biological father), and special holidays with each of her children. There are a few pitfalls along the way, including her third child being diagnosed with Asperger's syndrome. Her tenacity and lack of self-pity are admirable. And then she wrote this book, tapped into her iPhone, one letter at a time, using her right thumb, the last finger still working.
If you work in palliative care, I think you will bond with this story. Her seemingly calm attitude to the diagnosis and prognosis, and the subtle modification of values as the disease progresses, are both admirable and warming. As professionals, we see these patients stripped of their dignity—bare bums they are no longer able to wipe, the useless limbs—so it is good to know that the other half of their lives can embrace both some dignity and happiness. If you are caring for someone with ALS or, worse still, are suffering from the disease, this book will provide you with great comfort—even in the face of ALS, not everything need be bleak.
Roger Woodruff, MD (Australia)
July 2013
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 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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