2021; Volume 22, No 7, July

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

I can remember when Robert Twycross and his team produced the first edition of Palliative Care Formulary in 1998. It was a revelation to have to have so much information about the medicines we were using in palliative care in one place. This edition is significantly larger and more comprehensive and is a tribute to the editors. The other change is that, after six editions in 20 years, Robert Twycross has retired from the editorial panel but, judging by this edition, I think the PCF is in good hands.

The bulk of this book, nearly 700 pages, comprises the medication monographs, of which there are 141. They are grouped by system: gastro-intestinal, cardiovascular, respiratory, central nervous system, analgesics, infections, endocrine, urinary tract, nutrition and blood, musculoskeletal, oropharyngeal, skin, and anaesthesia. Each monograph deals with either a single medication (e.g., morphine) or a class of medications (e.g., antimuscarinics). In each monograph, there is an orderly display of information including Indications (focused on the indications relevant to palliative care, and including off-label usage); Pharmacology (including the mechanism of action and undesirable effects, the evidence for efficacy, and the pharmacokinetic data); Contraindications and cautions; Drug interactions; Undesirable effects (including uncommon or rare ones that may have serious consequences); Dose and use (with advice on dose, preparation, and route of administration for each of the different indications); Supply (reflecting the availability and cost in the UK); and References. Except for the Supply sections, the information is relevant anywhere and there is a table listing the medications whose the British and American names differ.

Part 2 is about prescribing in palliative care, with discussions about prescribing for different age groups (children and the elderly), for the imminently dying, and for those with hepatic or renal impairment. There are also chapters on anticipatory prescribing in the community, medications, and fitness to drive, medication-induced movement disorders, medications for pruritus, and oral nutritional supplements.

Part 3 is about different routes of administration and covers administration to patients with dysphagia or enteral feeding tubes, continuous subcutaneous infusions, transdermal patches, nebulisers, and spinal analgesia.

There are three Appendices that discuss anaphylaxis, opioid dose conversion ratios, and compatibility charts.

There are also 15 one- or two-page Quick Clinical Guides, indexed inside the back cover, covering common things such as death rattle, opioid-induced constipation, nausea and vomiting, inoperable bowel obstruction, and the use of transdermal fentanyl patches.

I found it difficult to fault this book. The amount of information is mind-boggling and what is presented is clear, well set out and accessible, appropriately detailed, and adequately referenced. I made a point of looking up the section on cannabinoids given my severe reaction to that amazing statement in Wright’s Fast Facts, “Medical cannabis is characterized by its efficacy in the treatment of medical conditions and symptoms.” (reviewed in the May Newsletter). There are six pages comprising 54 references. It provides a good description of the endocannabinoid system and the known effects of the different exogenous cannabinoids. For chemotherapy-induced nausea and vomiting, 5HT₃ antagonists are more effective and better tolerated, and cannabinoids should be reserved for refractory cases; the manufacturer advises against cannabinoids for non-chemotherapy-related nausea. For cancer pain, a meta-analysis of four RCTs found no clinically meaningful reduction in overall pain or need for breakthrough analgesia. A trial in chemotherapy-related neuropathic pain found cannabinoids no better than placebo. And there is a page detailing all the undesirable effects and drug interactions. What a difference it makes to have access to the scientific facts!

I do not have a copy of the sixth edition of the PCF to compare, but the editors say that the majority of the monographs have been fully reviewed and revised for this edition. I can make a case that this book should be available to staff in any and every palliative care service.

I am informed there is also an online version available on subscription. For $975 USD per year, a group of five people can subscribe, although only one can have access at any one time. This is nearly double what I pay for UpToDate, which provides me with access to a vastly greater store of medical information. Whilst I feel the price of the book is reasonable, the online subscription fees are in the ridiculous range for most palliative care professionals or your average palliative care service and are probably designed for a few wealthy pharmaceutical companies and academic centers that are able and willing to pay.

Andrew Wilcock is the Macmillan Clinical Reader in Palliative Medicine and Medical Oncology at Nottingham University, and Consultant Physician at Hayward House Specialist Palliative Care Unit in Nottingham. Paul Howard is Consultant in Palliative Medicine at Earl Mountbatten House on the Isle of Wight. Sarah Charlesworth is a Pharmacist and Senior Clinical Writer (Palliative Care) at Pharmaceutical Press, the publishing arm of the Royal Pharmaceutical Society, in London.

(Roger Woodruff, May 2021)

Other Reviews

I opened this book looking forward to learning more about the history of palliative care, but I had to wade through the first 188 pages before I got the first scent of it. Before that? A lot about childhood, families, medical school, political assassinations, ice hockey, terrorism in Montreal, Pierre Trudeau, more on international ice hockey, and his training as a urological oncologist. I didn’t enjoy the bit about his testicular embryonal carcinoma for which he had surgery, radiation, and chemotherapy. Then on page 189, when he was a visiting lecturer in Moscow, there is a discussion of his reactions and thoughts when his counterpart at the Moscow Cancer Institute said that patients with cancer should never be told their diagnosis.

Then things started to move. In 1972, for no particular reason he can remember, he went to hear Elisabeth Kübler-Ross talk to a packed-to-overflowing auditorium at McGill; what she had to say really made him think. Unrelated to this, he agreed to be involved in an adult education night about death and dying at his local Church; rather than simply relying on anecdote, the group decided they needed a study to determine how people died in local hospitals and, one way and another, this led to the 1973 Royal Victoria Hospital study that recommended the pilot project that was to become his Service. To find out more about hospice, he invited himself to St Christopher’s in London, although Dr Saunders told him not to bring his wife or count on going to the theatre. I enjoyed the descriptions of the goings-on at St Christopher’s and the people he met—including Mary Baines (whose move to St Christopher’s had been equated with professional suicide by her peers), and a young researcher by the name of Robert Twycross.

Back in Montreal, there was a mountain of work creating and organising the planned Service, involving much input from Elisabeth Kübler-Ross. He felt that “hospice” had some other connotations and after much thought and reflection came up with “palliative care” (soins palliatifs). Cicely and Robert Twycross apparently did not like the term, but history has come out in his favour. He went back to St Christopher’s for three months the following summer; among the people he met was a young Michael Kearney.

Over the following years, I watched as he built the Palliative Care Service, despite any number of objections and problems. Then came the first of the biennial biennial McGill International Seminars on Care of the Terminally Ill, several of which I attended and appreciated. Here, and through the rest of the book, are wonderful snapshots of a number of people involved in palliative care, including Dr Viktor Frankl (Man’s Search for Meaning), the Austrian neurologist and psychiatrist who survived Auschwitz and other Nazi death camps; Dr Leo Eitinger, the Czech Jewish doctor who only survived Auschwitz by forging his own death certificate; Ron Melzack, who developed theories of pain; and Derek Doyle, who talked about the barriers that palliative care doctors faced from their medical colleagues, “We faced a wall of ignorance…”

Balfour Mount’s discussion of the euthanasia/assisted suicide debate includes nothing religious. There is a letter he wrote to the nine Justices of the Supreme Court of Canada that included “It is the result of the shameful forty-years-long failure of provincial and federal politicians to support the provision of universal access to Palliative Care for Canadians.” But he heard nothing back.

It is not all about palliative care. There are moving pieces about his mother’s illness and death. And the dissolution of his marriage to Faye and subsequent marriage to Linda. But then it is back to the coalface. Medical power brokers bent on closing the Palliative Care Service; politicians and bureaucrats doing their best to defund and destroy palliative care. A normal person may well have given up.

The penultimate chapter is about a young Afro-Canadian bank robber dying of kidney cancer, transferred to Montreal from prison in Saskatchewan, whose admission caused a string of unexpected reactions.

The final chapter documents his esophageal cancer in 2000, and the chemotherapy, radiotherapy, and permanent tracheostomy he had when his disease recurred. Then he developed carcinoma of the bladder. But he celebrates making it to his 80th birthday in 2019. It is also a tribute to the two women who played such a big role in his professional life—Elisabeth Kübler-Ross and Dame Cicely Saunders. Their correspondence during Cicely’s terminal illness is illuminating.

These are the recollections of a very busy mind and there is a lot of stuff that has nothing to do with palliative care. But if you have an interest in palliative care, I think that you will enjoy this book.

(Roger Woodruff, May 2021)

This book came with two subtitles (the first on the front cover, the second from the title page), both of which are included above.

On the back cover, it states, “Compassion, patient autonomy, and transparent communication are the core of her care philosophy.” Cavenaugh says, “I wrote this book specifically for patients who have just been diagnosed with a terminal illness. I want to provide you with some guidance, support, and information about what to expect and how to make thoughtful decisions about your care… I will walk you through what it is like to decline and eventually die, hoping to dissolve some of the mystery and shed some light at the end. When you know what to expect, you can make informed decisions about everything…”

The chapters are relatively brief, well set out, and comprehensible to your average person. There are several chapters on what hospice care is about, how to research different services, getting your affairs in order, organising your personal carers, managing visitors, and managing problems with energy and mobility, eating and drinking, and your medications. Then there are chapters giving straightforward advice regarding the management of common symptoms, including pain, constipation, anxiety, shortness of breath, nausea and vomiting, and confusion and delirium.

There is an interesting chapter on Processing. “To process your own mortality, especially when you are dying, is huge.” She suggests you use the hospice professionals—ask them, for example, “Can you help me with my suffering? Can you help me find peace with my death?” She also provides lists of things you can consider doing, including permission be angry or to cry, and Ira Byock’s list of things that matter most is there.

The chapter “As You Are Dying” lists the signs of transitioning and then of active dying. The following chapter is for the caregivers and is about care for the dying (including both physical and psychological things that can be done for the patient, as well as what the caregivers can do for themselves), and what to do after the death.

I liked this book. It is written by an experienced professional for the ordinary person. I thought the information and explanations she gave were just right, and it is the first such book that I have seen that I would be happy to recommend to an enquiring patient or caregiver.

Beth Cavenaugh is a certified hospice and palliative care nurse and Reiki practitioner in Portland, Oregon, USA.

(Roger Woodruff, May 2021)

This is a collection of 22 short stories written by 17 people—relatives, caregivers, and health care professionals—involved in the care of dying people. The aim of this book is to raise awareness, amongst ordinary people, of the need to discuss end-of-life wishes in advance. It’s about planning and communicating. Does your family know what you do or do not want when the time comes? Do you know what your loved ones do or do not want?

I liked the stories that covered a wide range of issues, including advance care planning, not knowing when it would be nice to have completed the planning, a manual for the family of the dying person, the belated conversation, the imprecise directive, the distress of realisation when it hadn’t crossed your mind that your loved one was dying, letting loved ones go, loved ones letting go, unnecessarily aggressive interventions, futile therapies, knowing when to do nothing, “not for resuscitation,” intubation and life support, and a lot more.

I thought it curious that any reference to location—where the editors and contributors come from or where the stories take place—have been painstakingly removed. (I did find one “UK” they missed!)

Given my views on assisted suicide, there was one sentence that made me smile: “Far more universal and pressing than ‘the right to die’ is the right to have a non-medicalised and not over-extended, good quality end-of-life.” I heard the advocates of euthanasia and assisted dying screaming.

If you work in palliative care, the stories in this book will allow you to think about how you would address the clinical problems described, “What can be done to ensure our elders die with dignity and on their own terms if the natural end is in sight.” As it says in the foreword, this is not a textbook and “it provides no answers but may make you wiser.”

Dr Cardona is a former GP who is now associate professor of health services research at Bond University on the Gold Coast in Queensland, Australia. Ebony Lewis, RN, is a lecturer in the School of Public Health and Community Medicine at the University of New South Wales in Sydney. (Information courtesy of Google.)

(Roger Woodruff, May 2021)

This appeared when I searched Amazon for new books on palliative care.

The back cover says this book is for people who want to understand the plight of cancer, the challenges of facing death, and how to comfort the dying. Burke says, “I hope my words give you a sense of the importance to living life with kindness and compassion, [and] embracing death as a part of life…”

This is the story of the life and death of her husband, Shane. He had a shocking childhood, mainly because of an alcoholic father. From school, he went to prison. But there was something special—he worked in window cleaning and never had much money, but would never ignore someone with greater needs or who was homeless. He was a good husband and a great father. Then, at age 55, Shane was diagnosed with small cell carcinoma of the lung with widespread metastases. Sheila documents how they struggled to cope with the problems caused by the diagnosis and treatment. Some of the doctors at the hospital do not get good report cards, including the doctor who laughed at her when she asked about things to do with Eastern medicine. And blunt prognostication? “Insensitive” would be too kind a description. Then the coronavirus appears, causing a lot of disruption to hospital services. And the man that Shane shared a room with who couldn’t stop coughing? Yes, he was told a day or two later, the guy tested positive for COVID. Fortunately, Shane does not come down with coronavirus infection but it’s pretty much all downhill, with seizures and confusion and communication difficulties. She talks about the difficult things going on in her own head—about being without him, whether this was his last Christmas, his last birthday. There are more than a few complaints about the way her husband was treated at the hospital; I thought many of them were legitimate.

When Shane is deemed not fit enough to continue with active treatment, the oncologist evaporates and the palliative care team is left in charge. This caused distress as they had previously equated palliative care with hospice care and dying. But the difference in the care they received was remarkable. “Palliative care turns the patient back into a human being again.” They manage to get him home with visiting hospice for three turbulent weeks before his death and, again, the quality of the care he receives casts a shadow over the oncology service. He has conversations with his (dead) brother and mother, both of whom visit. I was full of admiration for the way she seemed to manage all the different nursing problems during those last weeks.

What I liked about this book was that the whole disaster was described by an ordinary person. And it was straight from the shoulder—nothing gets held back; there are lots of OMGs and frickings (and worse). In her afterthoughts on cancer and on dying, she describes what happened, and how some things might have been dealt with better. She talks about the emotional pain, providing some useful insights as to how one might deal with it. Her bottom line: “We need to normalize death… need to plan for death as we plan for birth.”

If you work in palliative care and hospice, this book will give you a no-holds-barred view from the other side of the desk and allow you to think about how you might have avoided or dealt with the problems described.

And that title? It is not an expression I am familiar with, but she comments in the first chapter that, “He led with compassion and grace… he turned all the bullshit he was handed into butterflies.”

Sheila Burke has lived in Ohio, USA, all her life. She is the founder of ZenSational Living, and cofounder (with Shane) of Being Better Humans. She is now studying to be an end-of-life doula.

Warning: If you like what you read to be pretty and polite, with expletives deleted, don’t even try to read this.

(Roger Woodruff, May 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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