2020; Volume 21, No 4, April

IAHPC Book Reviews

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

This is a clinically practical handbook, written from a (multidisciplinary) range of viewpoints.

I had to catch up on the terminology. I was informed that perinatal (PPC) and neonatal (NPC) palliative care have moved into distinct areas, separate from pediatric palliative care. PPC includes families whose expected baby is diagnosed during pregnancy with a life-limiting condition. NPC is an approach to care that recognizes the needs of infants after birth.

The book is divided into five sections. Section 1, Understanding Palliative Care, provides a good overview of PPC and NPC. Section 2, Caring for the Whole Family in Palliative Care, is about families (including siblings) and how best to deal with them. Section 3, Planning and Decision-Making, includes discussions of communication, memory making, advance care planning, and the difficulties encountered along the decision-making process. Section 4, Physical Aspects of Palliative Care: Diagnosis, Treatment and Outcomes, covers the management of pain and issues such as compassionate extubation. The final section, Supporting Families and Care Providers Through the Nuances of Palliative Care, includes a discussion of ethical principles, breastfeeding, spirituality and grief intensity.

Whilst I know little about PPC and NPC, I thought this book looked impressive. The text seemed well-ordered, and was enhanced by the generous use of tables, diagrams and photographs. Each chapter is accompanied by a list of references.

Of the 50 contributors, all are from North America except for two physicians from Marseille in France, who contributed an interesting chapter on a national study regarding barriers to referring patients to PPC and NPC.

If you have anything to do with PPC/NPC, you need to think about this book.

Purchase of the book entitles you to online access.

Note: Review copy courtesy Footprint Books.

Roger Woodruff, March 2020

Other Reviews

I thought this was a little gem of a book.

First, I sought some background on doulas. Wikipedia informed me “a doula is a trained companion who is not a healthcare professional and who supports another individual (the client) through a significant health-related experience, such as childbirth…or non-reproductive experiences such as dying. The doula's goal, and role, is to help the client feel safe and comfortable, complementing the role of the healthcare professionals who provide the client's medical care.”

The book is divided into several sections and covers Components of Doula Care, Aspects of Loss, Ways of Being/Ways of Doing, Grief Support, and Contemplative Exercises. The text seemed well edited and lean, with a reasonable use of lists and no waffle.

Arnoldy comes from a non-health-care-professional background, but her description of the interaction with the patient is remarkably similar to what we call palliative care. It is holistic, non-judgemental, unemotional, non-religious, and above all it is totally patient-centered. She emphasises open-mindedness in starting from where the patient is at, and not where the doula thinks they should be, or where the doula thinks they should be going. It may include the patient’s family and friends, as need be. So this doula care was about palliative care, from a slightly different angle, in slightly different language.

Whilst the medical and nursing degrees are of enormous importance in the overall delivery of palliative care, this book showed me that much of the human-to-human interaction that we call palliative care can be achieved without necessarily being a trained health care professional. If you work in palliative care, reading this book will allow you to reflect on the human aspects of the care you deliver, which I think is likely to be rewarding for both you and the patients you care for.

Little information was available about the author, except that she is a graduate of the University of Vermont, is a hospice volunteer, and developed and now directs the University of Vermont Larner College of Medicine’s End-of-Life Doula Professional Certification Program. Her website is ContemplativeDoula.com.

Roger Woodruff, March 2020

The 2018 WHO handbook on the management of humanitarian crises highlighted the importance of “the prevention and relief of pain, as well as other physical and psychological symptoms, social and spiritual distress.” It concluded, “therefore, palliative care should be integrated into responses to humanitarian emergencies and crises.” This book picks up that theme and emphasises the need to treat the suffering of the victims, which they say is just as important as saving lives. And that’s where palliative care comes in, because palliative care has a proven track record in relieving suffering. So, all humanitarian aid workers should be trained in the basics of palliative care, which is what this field manual is about.

But it did not add up for me. I agree that some of the principles espoused by palliative care (and which should permeate every branch of medicine) might not go astray. But this is not full-on palliative care as I know it, and some of the contributions reflected a lack of appreciation of what palliative care really is. I remained unconvinced that all humanitarian aid workers need to have basic training in palliative care, or that they would necessarily use it in their day-to-day work. The very important Sphere Standards and the Cluster System, neither of which I had heard of, were trotted out to reinforce their assertion that “all acute crises require palliative care expertise to be integrated into the initial or existing healthcare response.” It even crossed my mind that the humanitarian aid people were trying to look better by adding “palliative care” to their banner, without having a genuine appreciation of what palliative care really is.

Then there were chapters on the management of various conditions. The chapter on pain was too brief to be useful. Some of the chapters seemed superficial and there was no attempt to focus on the problems likely to be found in a post-humanitarian crisis population. The skin chapter was a bit better and discussed different types of wounds, tetanus, and I learned about the organisms that can cause serious floodwater infections; but I wasn’t sure why there was a section on lupus (SLE). The chapter on care for the dying noted the importance of a family meeting where one should “give the patient and family your undivided attention for 5 to 10 minutes.” If you were in the second-line, doing things to do with palliation (as distinct from the first-line where the emphasis is on saving lives), then I would feel that allowing only five to 10 minutes for the family of a seriously ill or seriously injured, dying patient was simply not good enough. Most people who work in palliative care would agree that trying to conduct a final meeting for the family of a dying patient inside five to 10 minutes is not going to satisfy the needs of those family members.

Then I saw the book was written “with a particular focus on trauma-informed care.” I had never heard of that before, so I didn’t think it was part of the palliative care package they were advocating. The best I could do (with the help of Google and the NEJM) was ‘that every patient may have experienced serious trauma,’ but there was no need to question patients about this, but just act accordingly. Wow! When I went to medical school, I was told to start by asking the patient what their problem was. But you don’t have to do that any more!

I completely agree that the survivors of humanitarian crises deserve to have their suffering addressed, but would suggest that what is being called for is simply improved medical care and appropriate communication. They deserve better palliation of their suffering, but that does not mean they need the package we call palliative care. The idea that the problem would be fixed by transplanting some palliative care (as we know it in developed countries) was a bit of a nonsense to me.

Of 35 contributors, 28 were from North America, two from Geneva, two from Australia, and one each from Bangladesh, Uganda, and South Africa. Mostly a comfortable distance from places renowned for humanitarian disasters.

Roger Woodruff, March 2020

Addendum re: COVID-19

This book was written before the COVID-19 pandemic. It was about how we could best manage the crises associated with natural disasters, infectious diseases (e.g., Ebola), and the international refugee crises sparked by war or famine, which seem to occur more frequently and/or have more devastating effects in developing countries. My comments above question the need for or validity of trying to transplant the palliative care “package” as we know it in developed countries. But that is not to say that the victims of these crises do not deserve better symptom palliation.

It has been brought to my attention that Oxford University Press is providing open access to two chapters of this book. I heard from a separate source that this was “to assist with care during COVID-19.”

The best description of the clinical features of COVID-19 that I found was at UpToDate. In its serious form, it presents as an acute respiratory illness with a median incubation period of 11 days, and another seven days to significant respiratory problems in those classified as having serious (14%) and critical (5%) infection. The overall case mortality in the Chinese study was 2.3%. The recovery time for the other 97.7% was 2 to 6 weeks, depending on severity.

Similar to the humanitarian crises discussed above, anyone suffering COVID-19 deserves the best possible symptom palliation, but I wasn’t sure there would be any advantage of employing the full palliative care “package”/team. As far as palliative care services are concerned, perhaps the more important question relates to staff safety: patients enrolled in palliative care are, because of their underlying disease, at greater risk of getting COVID-19, which in turn puts the palliative care personnel at increased risk.

Editor’s note: The two open access chapters referred to are:

• Chapter 2: Palliative Care Needs of People Affected by Natural Hazards, Political or Ethnic Conflict, Epidemics of Life-Threatening Infections, and Other Humanitarian Crises; and
• Chapter 9: Care of the Dying Patient

The opening chapters provide a brief overview of the history of hospice and palliative care in the West and, such as it is, in China.

The chapter on patient examination is presented in an unconventional manner, but includes the standard modalities of looking, listening, smelling, asking, and feeling. But then there is a section on Pulse Diagnosis, which I think says if you are experienced enough, the pulse will tell you what ails the patient and how long they have to live; but I am not accustomed to describing a pulse as “like a shrimp swimming.”

The following chapter was about the Five Elements, describing how each worked and might be of benefit to the dying patient. The discussion left me lost but, despite the lack of any reproducible evidence, it concluded that (for hospice and palliative care patients) “acupuncture helps to improve the patient’s inner experience while diminishing their physical distress.”

The next chapter appears to be a guide for practitioners, little of which I understood.

The last main chapter was about the effectiveness of acupuncture in treating the major hospice diagnoses. I made an effort to read the section on cancer. After pages of earnest discussion, I came across a reference to the review in the Journal of Clinical Oncology by Garcia et al of acupuncture in cancer care. They reviewed 2,151 publications, of which only 41 met all inclusion criteria; there was only a single positive trial (for chemotherapy-induced nausea and vomiting) that also had a low risk of bias according to Cochrane criteria. They concluded that, except for chemotherapy-related nausea and vomiting, the efficacy of acupuncture remains undetermined owing to the high risk of bias in the published studies.

Then one last twist. The acupuncturist is reminded that “your role is to move qi and help the dying patient release physical, emotional and spiritual blocks to ease the dying process.” But on the page before, it is suggested that wider availability of physician-assisted suicide would be beneficial. After all, “the disease is what kills the patient, the physician or medication is just a means of moving the process of death to its natural end.” I was so relieved to think that if I had just given a patient a lethal injection, that I had at least done them no harm. But I still felt in the dark about the place of acupuncture in the care of the terminally ill.

Torii Black is the Director of the National Association of Hospice and Palliative Care Acupuncturists in the United States.

Note: Review copy courtesy Footprint Books.

Roger Woodruff, March 2020

Last words may variously give us insight into the dying person’s perspective on life, or on death, or both. If you work in palliative care, reflecting on these may help one accommodate the almost infinite range we experience. This collection includes some wonderful quotes, although there seemed to be relatively few contemporary quotations, or ones that really made you sit back and think. There are quotes from the three Brontë sisters, and one from Johann Sebastian Bach that I had not seen before: “Don’t cry for me, for I go where music is born.” But to be fair, Cock-Starkey has limited herself to Last Words, and has not included opinions about death and dying by people not terminally ill. Looking at notes I made some years ago, there are some wonderful quotations from the likes of Dame Cicely Saunders, Elisabeth Kubler-Ross, and other insightful clinicians. Given the current vogue for hastened death, I was struck by the words of American nurse and educator, Barbara Karnes: “Dying a gradual death makes us the fortunate ones. We have been given the opportunity to say I love you, to amend the mistakes, to ride the rollercoaster, to say good-bye.” I wondered what the advocates of assisted suicide would have to say.

Note: Review copy courtesy Footprint Books.

Roger Woodruff, March 2020

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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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