2021; Volume 22, No 5, May

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

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

Palliative Care Book of the Month

At the outset, Dr. Spiess sets his course: “…my primary hope is for you, dear reader, to become more informed and at peace regarding your own dying.”

He talks about dying in America and what contributes to a good death, including Dr. Ira Byock’s “five things of relationship completion”: Forgive me – I forgive you – Thank you – I love you – Good-bye. He outlines the development of hospice and palliative care, what it entails, and emphasises that hospice is about living and improving the quality of the last part of your life. He discusses the importance of autonomy, but warns that it may be vulnerable to the wishes of close relatives.

There is a chapter about advance care planning that I thought would be both helpful and understandable to your average patient, and includes a discussion of some of the other management issues that may need to be considered for, as he says: “Little old ladies with dementia don’t usually just drop dead.”

Then there is a chapter on assisted dying (AD) about which I struggle to say anything good. He talks of the open, transparent system in Oregon, where…“reliable data on its [AD] use and outcomes are readily and publically available.” But when I looked, there was no information about the incidence of treatable depression because the patients were not examined for it. Even gross clinical depression gets through: the two Compassion in Dying-associated physicians who “missed” the patient’s long history of serious depression and multiple attempted suicides and signed him off as OK for AD. And whilst the patients are said to be of sound mind at the time they receive their lethal prescription, there is zero information about the mental state of 60% of the patients at the time they commit suicide, never mind whether they are coerced or “assisted.” Spiess makes much of the “widespread public support” for AD. But if 51% of Oregonians voted to legalise AD, but only 0.6% of patients dying with cancer in the following 20 years have opted to use it, aren’t we talking about two separate questions? I wondered if it was woke or politically correct to support legalising AD even if you don’t want it for yourself. His discussions about AD in Europe and the Netherlands are similarly superficial.

Needless to say, the saga of Brittany Maynard is trotted out. But to his credit, Spiess quotes some of Maynard’s strongest critics. Reading what one of them said led me to think of the many patients with terminal illnesses whose attitude and spirit I had admired, but wondered whether Brittany would have seen such life as “useless.”

After I survived the AD business, I am pleased to report that for most of the second half of the book, Spiess gets back to more of the helpful and important stuff, written not for those of us who work in palliative care but for the patient and their families. There is a good chapter about spirituality and religion that includes a discussion of the apparent lack of correlation between religiosity, the extent/quantity of medical care wanted, and peaceful dying. There is a long chapter “What Does it Feel Like to Die?” that includes a theoretical exercise that you can perform to try and bring yourself into touch with some of the emotive aspects of dying; I hadn’t seen this before and was impressed. A chapter on “Envisioning Your Own Death” is a realistic assessment of what may happen and includes a little section providing some advice for “companions on the journey.” And the last chapter “What’s It All About, Anyway?” concerns our views of living and dying, and “Admitting that you are going to die and making plans for it is not conceding.”

There is a lot in this book that would be helpful to patients receiving hospice and palliative care. And whilst he may not be advocating for AD, I felt he was less forthcoming with the whole truth in that section.

Dr. Spiess has spent his medical career caring for those with serious illness, first as an oncologist and then as a hospice physician. The blurb says he is “mostly” retired as associate medical director of Hospice of the Western Reserve in northern Ohio.

(Roger Woodruff, April 2021)

Other Reviews

Therapeutic massage may have a number of physical benefits in the palliative care setting: it may lessen physical pain, help prevent pressure sores, help with breathing and the digestive system, and may aid rest and sleep. In addition, therapeutic massage creates a host of intangible comforts related to connection and communication; these benefits are reciprocal, affecting both the massager and the massaged. In other words, as well as being of benefit to the patient, it can provide a simple and active way for family and friends to express concern.

The Introduction is titled “Dying for Beginners” and discusses the importance of touch. Following chapters cover the practical preparations for massage in the palliative care setting, instruction on the basic massage strokes, a full-body massage routine, and specific massage treatments for circulatory problems, breathing discomfort, and digestive problems. Then there is a chapter that “deals with the last moments of life and how to make that final breath more comfortable.” The following chapters give massage ideas for the physical and emotional needs of family and friends, the options we have today for where to die, and massage techniques to address the challenges of bereavement.

The book is very impressive and has numerous photographs and explanatory diagrams of the massage techniques. Then I went to Sutherland’s online classroom and found a wonderful collection of 87 video clips, illustrating a lot of the material in the book. Given the book and the videos, as well as a little time and encouragement, I thought that this type of massage was something that family members or hospice volunteers would be able to learn.

I strongly encourage you to visit her online classroom.

Christine Sutherland is a Registered Massage Therapist who lives in Kingston, British Columbia.

(Roger Woodruff, April 2021)

According to the cover, “This book provides hope and inspiration to those who have become disillusioned with conventional medical approaches to the relief of [chronic] pain.”

This collection of 14 essays by members of the British Pain Society Philosophy and Ethics Special Interest Group is their second publication; the first was also edited by Peter Wemyss-Gorman: Pain, Suffering and Healing: Insights and Understandings, Radcliffe Publishing (2011).

The scope of what is discussed in these essays is quite remarkable. That a placebo effect is not just about a dummy intervention but about the nature and power of the interaction between the patient and the provider; he also discussed nocebo and telecebo effects. The next advocated “healing from within,” teaching her patients to self-hypnotize and use imagery. There was a call to view suffering not so much as an enemy but as a guiding call for transformation. How we might do better at comforting our patients with chronic pain. That phenomenology, the subjective first-hand experience, was needed for pain to be understood, as it cannot be reduced to medical symptoms. The need to look to our doctors for compassion and validation of suffering as well as expertise. The effect of the use and misuse of language, especially the “warmongering” stuff—pain as the enemy; this writer and former physiotherapist, Betsan Corkhill, reappears later with a chapter on the potential of therapeutic knitting for patients with chronic pain. Spirituality and the central importance of the soul in any medical approach that seeks to be holistic. The search for meaning in pain through religion. The role of ethnicity and culture in the experience of pain and how it is treated. John Loeser’s description of the opioid epidemic in the USA surprised me: “In 2016, more than two million people had an opioid use disorder and overdoses caused more than 115 deaths daily.” And last, a collection of some first-hand accounts of pain—“One of the punitive effects of [chronic] pain is that it is unshareable…”

I have not had a lot to do with treating chronic pain, but some of the dogma that has drifted my way over the years has been a little worrisome. These essays were like a breath of fresh air—experienced clinicians looking and thinking outside the prescribed box. If your work involves a significant amount of pain management, you will enjoy these discussions.

Peter Wemyss-Gorman was a consultant anaesthetist until his retirement in 2000. He was a pioneer of multidisciplinary pain management and established the Pain Clinic and Pain Management Programme at the Princess Royal Hospital at Haywards Heath in Sussex, England, and was the cofounder of the BPS Philosophy and Ethics SIG.

(Roger Woodruff, April 2021)

The book is divided into a number of sections: Overview of Hospice, Essentials of Hospice Nursing, Spiritual and Cultural Issues, Physical Symptoms at the End of Life, Dying and Bereavement, Quality and Compliance, and Occupational Stress.

In the Preface, the author had the temerity to categorise her own book as “a vital resource,” which caught me a little offside. She says it will be useful to all nurses but I think it will be primarily used by nurses in hospice and allied fields. There is an enormous amount of information in this book, but for me there seemed to be far too much about organisation and administration and not enough about bedside care.

The chapter on end-of-life symptoms includes a brief discussion of a total of seven symptoms, which I felt was totally inadequate. Then there is a much-trumpeted new chapter on “Cannabis and Cannabinoids for End-of-Life Symptom Management,” to which I had a bad reaction. “Medical cannabis is characterized by its efficacy in the treatment of medical conditions and symptoms.” Wow! No qualifiers or caveats! Besides the known effects for nausea and vomiting, it states that the active components of medical cannabis have been effectively used to treat convulsions, insomnia, muscle tension, inflammation, pain, cachexia, irritability, agitation, emotional suffering, loss of appetite, and AIDS-related wasting. Sounds as though we should be using it a lot more! For a whole range of different indications! The sentence quoted above is probably the most ill-considered statement that I have seen in a palliative care text in 20 years of reviewing.

Medical cannabis may ameliorate some physical and neuropsychological symptoms, but may cause gastrointestinal and neuropsychological complications of its own. The treatment of pain (which is the most frequent indication for cannabinoid use in hospice patients) is, to say the least, controversial; the systematic reviews and meta-analyses in UpToDate showed a moderate response rate at best, and the number needed to treat for benefit was 24 whilst the number needed to harm was 6. Limited evidence suggests that cannabis may alleviate neuropathic pain, but is associated with an increased risk for motor vehicle accidents, psychotic symptoms, and cognitive impairment. Add to this the fact that there is no uniformity in the product you buy—the same product (be it Platinum Cookies, Sundae Driver, or whatever) purchased from different suppliers may have quite different composition and side effects.

Yes, cannabis is increasingly available in our communities and will be increasingly used by our palliative care patients. So, yes, we need to be more informed about side effects and potential dangers. But to advocate the use of substances with unreliable and variable composition, of quite questionable clinical value, and not without potentially serious side effects, is not the way I was educated. I wondered whether this was medical progress driven by social media rather than carefully conducted clinical trials.

My reaction to the discussion of medical cannabis to one side, this book contains a heap of information that I think would be useful for nurses in hospice and palliative care, although I would have liked to see more about symptom palliation and clinical care.

(Roger Woodruff, April 2021)

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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.

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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