2021; Volume 22, No 6, June

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 book aims to “contribute to a better understanding of and respect for the motivations and attitudes behind patients’ wishes and focus towards the end of life—be it to end their life deliberately or choose not to do so—and thus to improve the capacity to offer appropriate holistic care and psychosocial and spiritual support in the twilight of life.” It is not about new attitudes and concepts, it is an assessment of what is happening now.

The first section is about the dying person and their loved ones. They ask what makes a good death and discuss physical and psychological comfort, inevitability, individuality, reconciliation, and being prepared. They look at some of the beliefs and attitudes about death and dying—peoples’ fears, hopes, beliefs and assumptions and how they coped with their end-of-life journey, their feelings and ordeals and the challenges of loss, trauma, pain and suffering.

Part II focuses on medicine and care at the end of life. They talk of treatment that is appropriate and sufficient and compare it to therapy that is inappropriate or inadequate. There are examples of patients for whom satisfactory treatment was impossible and a discussion of why. In a world where, medically, one can be kept alive or put to sleep, the issues of “quality of life” and “quality of death” are considered in some depth. There is a chapter on euthanasia and assisted dying that contrasts the debate going on in the UK with what has happened in the Low Countries; having worked professionally in both the UK and Belgium, Proot is perhaps especially qualified to make these comparisons. I thought the discussion of the pros and cons of assisted dying was open and balanced—the possible benefits of assisted dying are listed, but so are all the possible (or proven) negative effects and consequences. The last chapter in this section focuses on patient-centred care.

A postscript chapter reflects on the lessons learnt from the Covid-19 pandemic.

A real feature of this book is the hundreds of clinical anecdotes and quotations from people they have interviewed—patients, family members, and health care professionals—that anchor the discussions in reality and truth. In their words: “This is not a theoretical or philosophical book; it is about life with all the delights and failures.” As a taste, here are two quotations, both of which are attributed to hospital chaplains.

“Every week I come across situations we would regard as a very good way of dying, a normal process, without pain and anxiety; yet the family surrounding the bed are saying ‘This is intolerable, this is not humane, this is not human dignity. DO something.’”

“Some elderly people will say they want euthanasia, and when I ask to clarify whether they want a doctor to come in with a syringe and kill them with that syringe, they say no. They just want to have no more pain and no more treatment, no more scans; hence, I understand that what they really want is to be left in peace.”

If you work in palliative care, I think you will enjoy this book. It addresses practical clinical questions that we have to deal with regularly. I remain opposed to euthanasia and assisted dying, but the discussions here seemed somehow more sophisticated than the usual pro-assisted-dying rant. My reflections on the literature surrounding AD are available free on the IAHPC website here.

Catherine Proot holds a masters degree in psychology from Ghent University, Belgium, and a doctorate from the University of East Anglia in Norwich. She previously worked as Psychological Specialist in Palliative Care and Bereavement Coordinator at St Nicholas Hospice Care in Bury St Edmunds in Suffolk and now works in private practice in Brussels. The Very Reverend Michael Yorke (1939-2019) was a Cambridge graduate in law and theology who was an Anglican Priest and Vice Chairman to the Norfolk Hospice near Kings Lynn, UK.

A previous publication by Proot and Yorke, Life To Be Lived – Challenges and Choices for Patients and Carers in Life-Threatening Illness (Oxford University Press, 2014), was my Palliative Care Book of the Month in November, 2014.

(Roger Woodruff, April 2021)

Other Reviews

This is a collection of 29 stories about one doctor’s experiences in palliative care in India.

Dr. Priyadarshini Kulkarni reflects on the “false pride of becoming a doctor and saving lives” at the time of her graduation from medical school. Her own grandmother was diagnosed with lung cancer and died shortly after she graduated, and she notes the absence of any teaching about death and dying in the undergraduate curriculum (how true is that!).

Her essays touch on many of the issues relevant to palliative care. Breaking bad news; the patient’s right to know and the importance of information in planning; delivering care that is appropriate; detailing and emphasising the patient’s own goals of care; respecting individuality, maintaining dignity; spirituality and religiosity; maintenance of realistic hope; the importance of being present; helping patients achieve what is important to them; the importance of listening; the needs of caregivers; and much more. She emphasises communication, including the non-verbal when there are language barriers: “He held my hand and we said so much to each other without uttering a single word.” And there is a telling tale of euthanasia requested.

Especially during the time when palliative care was just beginning, I thought I had heard my full share of derisive comments about palliative care from superior colleagues. But Dr K added one more that I had not heard—that palliative care be mocked as “doing nothing to save life.”

Dr MR (Raj) Rajagopal (Kerala), Dr Rosalie Shaw, and Dr Cynthia Goh get honourable mentions. I was impressed by her description of Rosalie Shaw exploring very personal matters with a woman with unresponsive pain. There is a sign on the wall in Raj’s clinic, saying “Listen,” to remind you to do just that.

I thought it was well written. I can sit back and point to where the English was not perfect, but it’s perfectly understandable and it’s a thousand times better than anything I could write in Marathi or any other Indian language. But I have to admit that I didn’t like her talking about “cases.” When I was in medical school, we had a very good surgeon (who would not have recognised palliative care if it had bitten him) who told us you could have a case of apples or a case of oranges, but in medicine you never had a case of something, but a person with breast cancer or whatever.

If you work in palliative care, I think you will enjoy her tales and it will give you the opportunity to think through how you might address some of the problems she describes.

Dr Priyadarshini Kulkarni is a palliative care specialist in Pune, India. An anaestheologist by training, she went on to pursue postgraduate training in palliative care in Singapore, Adelaide and Cardiff.

(Roger Woodruff, April 2021)

Death may be inevitable, but I remain to be convinced that a right to assisted dying (AD) is inevitable.

In the Introduction we are taken through the sorry stories of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, which author Katie Engelhart says fuelled the debate about autonomy and AD. Then comes Oregon’s Death With Dignity Act (DWDA), which she calls ”a moral turning point for the country and the world.” That made no sense to me—if you support AD, then by the time the Oregon business got going, they were already doing 4,000 cases a year in the Netherlands. When she looked into it further, she found scant data on AD patients in the USA, and she decided she needed to talk to these people and explore the “euthanasia underground.” But what she found was a lot messier than she expected.

The bulk of the book is what she learned about AD from six individuals—four patients planning it, and two doctors wanting to do it more. The patients were suffering old age, severe MS, dementia, and psychiatric illness. As I listened to their responses and read the colourful histories and character portraits provided by Engelhart, there was no question about their suffering, but they came over to me as quite unusual people—no Mr or Mrs Ordinary here. Then there was Dr Lonny Shavelson who runs a boutique death clinic in California, quoted as “buoyantly” greeting his patient with, “Do you remember that I’m the doctor who is here to help you die.” Lonny’s grandmother had a stroke and was subjected to unrequested euthanasia. His mother had Crohn’s disease and asked him to kill her. And, lastly, Australia’s own Dr Death, Dr Philip Nitschke, who probably needs no introduction. What I had not seen before was his admission to “this sexual urge” that he felt as he left the house of someone for whom he had just performed euthanasia.

The patients with whom the author interacts do not do well. One woman made it to Switzerland, but flew home again. Much is said about the patients with non-terminal conditions, dementia and psychiatric illness who do not qualify for AD under American law. She discusses a "physician-unimpeded death" model and asks whether “rational” suicide exists. She even suggests that American states should adopt the broad inclusion criteria employed in Holland and Belgium, but says nothing of all the abuse that has occurred with it (such as a thousand people a year subjected to euthanasia without request). But to her credit, there are a number of (what I would call more sensible) quotations from the likes of David Sulmasy, Ira Byock, Ezekiel Emanuel, and Atul Gawande, to mention a few. And she provides a good description of the situation in the United States, where it may prove impossible to continue increasing the vast amount of money spent treating people in the last year of life, and where the proposals for remuneration for physicians counselling people about living wills and end-of-life care were hijacked by conservative lawmakers who likened it to government-run “death panels.” It reminded me of Derek Humphrey’s “In the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”

There is a lot in this book that I admired, but in the end I felt it overemphasised the emotive and psychosocial aspects of AD, and chose to disregard some uncomfortable truths and observed facts. She takes the side of the small number of very vocal individuals who are ineligible for AD under the DWDA because they don’t have a terminal illness; but I do not agree with her allusion that there may be large numbers of similarly suffering people who want AD, but are thwarted by the cruel law. How does she explain that of the approximately 150,000 people who died with cancer in Oregon in the last 20 years, who would have qualified for AD, only 0.6% chose to use it. To cite but a few other examples:

(i). I didn’t find any reference to any problems with the performance of physician-assisted suicide. A US survey reported that it failed in 15% of cases. A Dutch report said it failed in 18% of cases. Reviewing the Oregon data, Ganzini reported that six patients (of about 290) had regained consciousness after AD, including one individual who awoke after three days and lived for another three months.

(ii). Engelhart mentions the possibility that AD might be associated with increased (non-assisted) suicide, but doesn’t give any figures. In Oregon, from 1998 to 2012 (during which time the DWDA was operative), the non-assisted suicide rate increased from under 14 to 17.7 per 100,000. She then says no increased suicide was noted in a Canadian study (probably conducted too early to see any effect) and nothing more is said. Excuse me? The suicide rate in the Netherlands went from 8.3 to 11.1 per 100,000 in the period 2007 to 2015; i.e., it increased by 34% at a time when AD was readily available for people with chronic diseases, including psychiatric illness and dementia.

(iii). She describes the euthanasia rates as “steady” in Belgium and Holland. Pardon me? The number of reported deaths in Belgium increased from 235 in 2003 to 2,022 in 2015. In the Netherlands, the number rose from 3,000 to 7,000 during the period 2005 to 2015.

I certainly do not agree with everything Engelhart says, but I would recommend this book to anyone with an interest in the questions surrounding AD.

Katie Engelhart is a reporter and documentary film producer from Toronto who has worked in London and New York. She was formerly a graduate student of history and philosophy at Oxford University.

My reflections on the literature surrounding AD are available free on the IAHPC website here.

(Roger Woodruff, April 2021)

Mwangi starts by discussing the rapid growth of palliative care as he sets out to examine what are the underlying frameworks that guide the creation of palliative care standards around the world, and what are the salient factors associated with the growth of palliative care services in countries where such services exist. There is a chapter on standards in palliative care, including methodological issues related to data collection and analysis. However, this was based on documents in English and one in French, but not other languages. The second part of this study relates to those factors that shape health care systems and relate them to palliative care and, in turn, the different factors responsible for the growth of palliative care. Both population aging and the availability of adequate health care personnel are associated with growth of palliative care services. HIV mortality is another predictor of the growth of palliative care, commonly seen in sub-Saharan African countries, and suggests a developed/developing nation divide. In more developed nations, palliative care is correlated with well-developed health care systems and increasing prevalence of chronic diseases among aging populations; in developing nations, the emergence of palliative care is associated with HIV-mortality.

I am concerned that Mwangi’s analysis is based on data collected and analysed in 2006, and the figures are no longer applicable; there is more up-to-date data available. That he should advocate measures of suffering rather than mortality as an estimate for the need for palliative care is in keeping with the Lancet Commission Report (2017).

Dr. Samuel Mwangi, PhD, is a lecturer in the School of Humanities and Social Sciences at Kenyatta University in Nairobi, Kenya. The material in this book came, I believe, from a doctoral dissertation.

The prices quoted (from lap-publishing.com, amazon.co.uk, and amazon.com, respectively) seemed to be a bit on the expensive side.

(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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