END OF LIFE CARE IN NEUROLOGICAL DISEASE
David Oliver (Ed.)
RRP $US 39.95, £ 26.99, € 139.95
This book grew out of the report on a UK meeting of health and social care professionals, together with representative patient organisations, convened to discuss the needs of people with progressive neurological disease. It is hoped the book will stimulate the range of different services involved—elderly care medicine, neurology, rehabilitation medicine, primary care, specialist palliative care, social care, and voluntary organisations—to consider how they can collaborate to improve the quality of life and end of life care for these patients and their families/carers.
The book focuses on patients with motor neurone disease, multiple sclerosis, Parkinson’s disease and associated conditions, and Huntington’s disease. The differentiation between palliative care and end of life care in the opening chapters was a little difficult to understand, as I had always regarded the latter as one of the last stages of the former; I wondered whether it was to fit in with the terminology being used in the policy debate in the UK. That said, I agree that patients with progressive neurological disease (and their families) may require palliative and supportive care for much longer than your average patient with metastatic disease. The chapters dealing with communication problems (both physical and cognitive), physical symptoms, and the psychosocial and spiritual aspects of care are all good. The chapters on multidisciplinary care (the operation of a team or multiple teams working together), advance care planning, care at the end of life, and caring for the carers, include pertinent material that is applicable across the whole field of palliative care. The closing chapters discuss how these ideas might be implemented in the UK and there are short reviews of what is happening in Australia, Europe and Africa.
This book represents a lot of work and consideration, cataloguing the needs of these patients and their carers and working out how those needs can be best met. Other groups who provide supportive and palliative care to patients with other organ-specific diseases could do a lot worse than follow this plan. Some of the material in this book is specific to neurological disease, but a lot of it is worthy of consideration by people who work across the spectrum of palliative care.
WOUND CARE AT END OF LIFE
Collier, Protus, Bohn and Kimbrel
HospiScript Services, 2013
RRP $US 24.99, £ 16.06
I like this manual, which appeared in an Amazon search for books regarding palliative care. I didn’t have a clue who or what HospiScript was and found they were a company aiming ‘…to provide a best-in-class, hospice centric pharmacy solution…’ Their website states ‘Hospice is Good. HospiScript supports our hospice clients and promotes hospice awareness whenever possible.’ I’m not sure what a pharmacy solution is, but they get good marks for this manual.
This is my sort of manual. It’s short, clear, and well set-out with algorithms and treatment tables—even a physician can understand it. It starts with the BUILD program, which looks like a bit of classic palliative care. Build trust and respect with patient and family; Understand how wound impacts on them; provide Information about wound care and outcomes; Listen to the patient; and Develop a plan with the patient.
There are clear discussions of factors that will help or prevent healing, followed by the management of pressure ulcers, arterial and venous ulcers, and fungating or malignant wounds. Appropriate to palliative care, the reasons why medically-correct and best-intentioned treatments may not achieve healing are discussed. The last chapter discusses alternative treatments, including honey and the use of larvae therapy. The latter may sound a bit primitive, but I see the use of maggots is FDA-approved and can be very effective in debilitated patients or in countries where pharmaceuticals are unavailable or too expensive.
This book would be useful to the experienced professional as a quick treatment lookup tool, and as a learning guide for those less experienced. My only criticism would be about the lack of pictures. Illustrative photographs would lift this manual from good to really useful.
IN AWE OF BEING HUMAN
A Doctor’s Stories from the Edge of Life and Death
Abiding Nowhere Press, 2013
RRP $US 16.00, £ 10.53
Betsy MacGregor is a retired paediatrician with considerable credentials in paediatric pain and palliative care and was a Faculty Scholar with the OSF’s Project on Death in America.
This book brings stories from the bedside and clinic that are thematically arranged to illustrate her beliefs and insights into what being a good doctor means (or requires), what serious or mortal illness means to patients and families (and how we can best help them), and ‘the many ways in which triumph and transformation can prevail amid harrowing circumstances.’ I liked her chapter headings, juxtaposing different qualities, such as Suffering & Compassion, Beauty & Brutality. Many of the people she writes about come to life, a number with gross personal and social disadvantage (from the Lower East Side of Manhattan) before you get to their medical problems. Occasionally, it felt overwritten for dramatic effect—every person I have seen fortunate enough to have survived a cardiac arrest and cardiopulmonary resuscitation has looked like they have been hit by a bus and complained of the pain of fractured ribs, rather than ‘positively glowing with life.’ But that’s probably just personal taste.
Her professional life has been a source of great satisfaction to her—she regards it as a privilege to have been able to help the ill and suffering. But what stood out more was the love mixed with the excellent clinical care. Kathy Foley sums it up nicely: ‘Betsy Macgregor is a doctor who has taken her patients into her heart, sharing with them the wonder, terror and exultation of standing at the edge of being. We can all benefit from her experience.’ True.
EVIDENCE-BASED NON-PHARMACOLOGICAL THERAPIES FOR PALLIATIVE CANCER CARE
William C. S. Cho (Ed.)
RRP $US 189.00, £ 111.92, € 139.95
Non-pharmacological therapies are being increasingly used in cancer care, as evidenced by the inclusion of a Wellness Centre in the new Olivia Newton-John Cancer Centre at my former hospital. But big questions remain about what works and for what.
This book sets out to seriously review the data that is available. After an introductory overview, there are chapters on the effects of massage for anxiety and depression, massage for cancer pain, acupressure for chemotherapy-induced nausea, Qigong (“che-gong”) in cancer care, yoga and quality of life, mind-body therapy on stress reduction, mindfulness-based interventions in cancer care, and aromatherapy for symptom management. Each review includes comments about adverse effects as well as the physiological theories why the therapies might be of benefit.
The literature reviews presented seem rigorous and frequently show suggestive evidence but no robust proof. This can be attributed to the heterogeneity of the literature—a myriad of different therapies, practised in any number of ways, assessed by a variety of standards, against any one of 20 or more symptom complexes. The need for good quality on-going research is self-evident. If you believe that complementary therapies may have a role in cancer care (which I do), here is a good review of the state-of-play for some of the treatments advocated, although a little on the expensive side.
KNOCKING ON HEAVEN’S DOOR
The Path to a Better Way of Death
RRP $US 25.00, £ 16.99, $ AU29.99
Review copy supplied by Simon and Schuster, Australia
First her father had a disabling stroke. Then he was fitted with a cardiac pacemaker. Then several years sliding down the slope of dementia. To what can only be described as a poor death, trying to shield him from interventionist doctors. Then her mother was told she had to have cardiac surgery, but refused. A long and emotional journey.
But that’s just the background. What Katy Butler is really writing about is our inability to deal with the reality of dying in the twenty-first century. She writes about the USA, but I recognise many of the things she talks about. She delves into the ethics of caring for the elderly and dying and some of the reasons for what she calls Fast Medicine, with its never-quit default pathway. She correctly concludes that it is sometimes due to the doctor needing to do something rather than sit down for 30 minutes and honestly discuss bad news, be it for financial reasons or their inability to discuss such matters. Thank heavens for the State of New York, where doctors are now required by law to provide all patients with a prognosis of less than six months with information and counselling on palliative care.
Having pointed out some of the many pitfalls along the way, she provides a road map for people trying to achieve a better death for their elders and loved ones. Whilst pointing out the flaws in the system, cardiologists come in for particular criticism. Why is it that I have never ever received a letter from a cardiologist to tell me a patient under our mutual care had died? And I recently had an 80-odd year old man who would die of multiple myeloma within days or a week or two. Space does not permit me to describe the response when I asked his cardiologist to disable his implanted defibrillator.
For those of us who work in palliative care, this book has important messages about trying to improve the system (and palliative care must have a voice in that conversation), and about how to plan towards a better death for our own loved ones and avoid the eleventh-hour crisis that seems to cause so much suffering.
The Human Experience of Death
RRP - Not yet listed on Amazon. Available from fishpond.com.au
Review copy supplied by Random House Australia
Nogrady, an Australian science journalist, offers an alternative title for her book—Everything you wanted to know about Death, but were afraid to ask.Yes, but as a clinician, I thought there were things that warranted more or slightly different coverage. There are chapters about why we die, where we might die, the timing of death, the experience of others present, and the interaction between death and beliefs.
Overall, palliative care gets a good hearing, but Nogrady’s first sentence about what we try to do…well, it grated. ‘When all medical treatments have failed, all the options are exhausted and a decision has been made to stop intervening, palliative care steps up to the plate.’ Twenty years ago I wrote ‘…multidisciplinary palliative care should be initiated at such time as a patient with cancer is symptomatic of active, progressive, incurable disease, and should never be withheld until such time as all modalities of anticancer treatment have been exhausted’, which is a fundamental tenet handed down to me from the generation before. To give Nogrady her due, some of the points made in the following pages paint a better, broader view of palliative care as active therapy. But you know what they say about first impressions.
There were a few areas where I felt her discussion lacked depth. Her description of music therapy (‘music thanatology’) felt sterile to me. She should read Runningdeer’s Musical Encounters With Dying (recently reviewed here) to put some life and palliative care back into music therapy. She provides useful descriptions of euthanasia (in Belgium) and physician-assisted suicide (in Switzerland) but seems to avoid the information available from The Netherlands. The thousand patients a year (a little less, recently) euthanized without request, and the other problems with the Dutch system, don’t seem to be mentioned.
A couple of other minor irritations. ‘Australian palliative care nurse’ Bronnie Ware and her The Top Five Regrets of the Dying make an appearance on p.179. As noted in my review earlier this year, Bronnie is neither a nurse nor had any training in palliative care—she was a bank officer—which I feel make her feats and insights into palliative care all that more remarkable. And on a number of occasions, Nogrady details the benefits of advanced care planning and advanced directives, but I think ‘advance’ is the correct word.
All that said, this is a good book that I would recommend to a friend or family member who wanted to explore questions about death and dying a little more. It is written in language they would understand and it provides reasonable coverage (even if not as much as this palliative care physician might like). I was interested in the story about iron lungs and her relation of near-death experiences, and would have liked more about the interaction between our various belief systems and death.
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
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.