2021; Volume 22, No 3, March

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 detailed and even-handed discussion regarding proposals for the legalisation of assisted dying (AD) in the United Kingdom.

In the first chapter, Preston discusses AD and the law—the effect of the Suicide Act as it stands, prosecutorial discretion, and protagonists’ wish for prior immunity from prosecution. He quietly responds to the advocates, indicating where their arguments are either wrong or irrelevant. In the second, Finlay discusses the doctors’ dilemma, including issues of choice and control as well as the effect on the doctor-patient relationship. The saga involving the Royal College of Physicians, whose statement of neutrality was interpreted as supporting a change to the law, is mentioned. Preston then discusses various social perspectives of AD and I liked the quiet dismantling of a comprehensive-sounding public opinion survey. Finlay finishes this section with a discussion of the evolution and availability of palliative care.

The longest chapter, nearly one-third of the book, is titled “What News from Abroad?” A range of issues to do with the system in Oregon, from the infrequency of psychiatric assessments to the effective lack of oversight and regulation, are politely discussed. It is noted that the doctor was present at the time of suicide in less than 20% of cases; in fact, no health care personnel were present at 60% of suicides, and there is therefore no information about whether these patients were coerced, or “assisted” to take the medication, or what their psychological state was. So much for self-administration and mental competence being the proven safeguards in the Oregon system. Issues related to the length of the doctor-patient relationship are discussed, but the authors do not mention that all you have to do is call Compassion and Choices (reportedly involved in 90% of AD cases in 2009) to be referred to an AD-sympathetic doctor. The questionable significance of public opinion polls is discussed somewhere else in the book, but the importance of the data from Oregon is not emphasised: 51% of voters voted for the legalisation of AD, but in the first 20 years, only 0.6% of patients dying with cancer have opted for AD. Also not mentioned is the unequivocal evidence (from Oregon and the Netherlands) that the rate of (non-assisted) suicide increases after legalisation of AD.

Moving on to the Netherlands, there is respectful discussion of the rising number of cases and the limitations of their review system. The widening list of indications for AD is mentioned, but I did not see “tiredness of life” or “life being completed and no longer worth living.” The SCEN (Support and Consultation for Euthanasia in the Netherlands) is mentioned, but not that one of its specialist physicians was convicted of murder for killing an 84-year-old woman who had not requested euthanasia. And I saw no mention of non-voluntary euthanasia. The Dutch themselves reported that throughout the 1990s, there were 900-1,000 cases per year of euthanasia without request; the number may have come down a little since then, but there were still 440 deaths from non-voluntary euthanasia in 2015. There is no mention of the attitudes of expert Dutch doctors as discussed by John Keown, such as, “It is the patient who is now responsible in the Netherlands for avoiding termination of his life.” The discussion about Canada is of questionable relevance to the UK, as the government has admitted that only 15% of Canadians have access to quality palliative care. But the treatment of doctors with conscientious objection to AD in some states (threatened medical deregistration) defies belief. And there is no mention of (what I consider to be) the aggressive attitude of the protagonists: the Minister for Health in Quebec forced doctors at McGill University Health Center to perform lethal injection in the palliative care unit, rather than the patients being transferred elsewhere in the facility for euthanasia.

There are chapters on the moral dimensions of AD, including some secular concepts, as well as issues to do with clinical safety, informed decision making, and oversight and monitoring. But I was concerned about the overwhelming evidence from everywhere that AD has been legalised that the “safeguards”—those restrictions carefully put in place to guarantee that no harm could possibly come from legalised AD—either do not work or are abused.

This is a good book that is respectful of many views regarding AD. But I was left wondering whether that attitude had led them to being soft when describing the results of legalised AD elsewhere in the world. It is one thing to make a cogent argument against the legalisation of AD in the UK, but it is something else to believe that, at such time as it does occur, the UK will somehow be divinely immune to all the problems that have accompanied the legalisation of AD elsewhere in the world.

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

Ilora Finlay is Professor of Palliative Medicine at Cardiff University School of Medicine and sits as an independent Crossbench Peer in the House of Lords. Robert Preston joined the parliamentary service after a career in Whitehall. He was Clerk to the House of Lords Select Committee that examined Lord Joffe’s 2004 Assisted Dying for the Terminally Ill bill. From 2010 to 2019, he was Director of the think-tank Living and Dying Well.

(Roger Woodruff, January 2021)

Other Reviews

Historically, paramedical training has emphasised managing acute trauma, as well as medical and surgical emergencies, and end of life care has received relatively little attention. Paramedics have expressed the opinion that they are inadequately prepared to care for patients who are at the end of their life. This book sets out to redress this problem.

The opening chapters deal with death and dying in society, the evolution from the medicalisation of death to the biopsychosocial model, and provides a good outline of what palliative care is and the goals of care. The chapter on palliative care emergencies covers superior vena caval syndrome, hypercalcaemia, spinal cord compression, neutropenic sepsis, and other catastrophic events in the terminally ill. The chapter on symptom management covers pain, nausea and vomiting, breathlessness, delirium, respiratory secretions at the end of life, constipation and hiccups. There is a chapter on enhanced communication skills in palliative and end of life care. The next chapter sets out the 10 key elements for caring for the dying patient. Another chapter deals with issues to do with mental capacity, advance directives and ethical issues in practice. The last chapters are about professional resilience and the paramedic as an end of life specialist.

The text employs a useful system of headings and there is generous use of lists and tables and diagrams. There are short case studies with questions as well as highlighted paragraphs labelled “Pause for Thought.” Each chapter seems adequately referenced.

I liked this book. It would certainly seem to meet the need for information about palliative care in paramedic training. It crossed my mind that it would also be an informative primer on palliative care for medical and nursing undergraduates who were looking for a little extra information.

Tania Blackmore, RN, is a Senior Lecturer in Palliative and End of Life Care in the Faculty of Education, Health and Human Sciences at the University of Greenwich in London. Of the other six contributors, five are from England and one is from Ireland.

(Roger Woodruff, January 2021)

I reviewed the hardcover edition of this book when it was released in 2018, and noted what I felt were exorbitant prices quoted on Amazon. A paperback and e-book editions were released in 2020, at what I consider respectable prices, and the review is reprinted here.

This book is about many different aspects of terminal illness and bereavement from the social work perspective.

The range of material covered is remarkable: the complex interactions between the personal, individual, and internal world of both of both patient and professional; discussion of what is a good death and the psychological challenge of how to relate to the dying as they are dying, and how as we die we relate to the living; the problems of cancer survivorship; a discussion of communication issues, emphasising that in creating advance directives the quality of the conversation is more important than the completion of the paperwork; a psychoanalytic exploration of our primal anxieties and the associated defences, suggesting ways in which professionals, organisations and individuals can contain the inevitable fear and pain associated with death and dying; meaning making—enabling people to find meaning in the course of a life-threatening illness; the experience with a number of social work-led educational programs for both care professionals and the public, and the difficulties in providing compassionate care, particularly for those suffering both physically and existentially, and the usefulness of Schwartz Rounds as an intervention to counteract this. And a lot more.

Heather Richardson is a nurse by training and is now Joint Chief Executive of St Christopher’s Hospice in London. Gillian Chowns is a social worker by profession and is Chair of the Board of Trustees of Palliative Care Works, a charity offering education, training and mentoring in resource-poor settings. The contributors are all from the UK.

This material was originally published in Journal of Social Work Practice 2016; 30: 115-228. The book has an index that was probably not in the journal.

This book made me sit up and take notice. I found having things described from the slightly different angle that is the social work perspective was refreshing and provided some new insights. I was particularly interested in the use of Schwartz Rounds and the deliberate steps taken to promote containment. Anyone who works in palliative care will benefit from reading this little book, and I think will enjoy it along the way.

(Roger Woodruff, December 2020)

I had to start with the Appendix on p. 305 that outlines what Shiatsu is. I was informed it “is a Japanese touch therapy…suitable and appropriate to be offered to patients as complementary to conventional medical practice…can support patients undergoing the challenges of medical treatment and its side effects…can help with symptom control and increase energy levels…can improve emotional resilience…[and for the relatives and carers can] support the grieving process.”

This book is written primarily as a resource for Shiatsu practitioners and “explores the myriad ways in which we as practitioners and our clients meet death.” The opening chapter is about death and loss in our society, with which I was quite comfortable. The next chapter on the theory and practice of Shiatsu was a bit beyond me and used terminology with which I was not familiar—the Ki, Yin and Yang, Qi, the Po and the Hun, to mention but a few; she does provide a glossary at the end of the book. The following chapters discuss the client (how people live, die or respond to death and grief), the practitioner (how to talk about death and the practical steps in supporting clients), and the client-practitioner relationship (what goes on between the client and practitioner, spoken and unspoken). There is a chapter regarding death and the teaching environment, and the final chapter provides meditations and Qi gong for building strength and protection.

I do not feel qualified to pass judgement on the clinical work described here. But looking through the book, I repeatedly noticed that it seemed complementary to palliative care, rather than an alternative. If you employ other aspects of traditional Chinese or Oriental medicine, or you would like to know more about it, you should consider this book.

Tamsin Grainger has been a Zen Shiatsu practitioner since 1991 and is the co-founder of The Shiatsu School in Edinburgh, UK.

(Roger Woodruff, January 2021)

This book is directed primarily at the US college classroom, and sets out to enable readers to develop a sociologically informed understanding of the broad range of complex issues that underpin death and dying, or what they describe as “a holistic understanding of death and dying.”

The opening chapters offer a historical overview of sociological understandings of death and dying, an introduction to some of the key concepts sociologists use to make sense of some of the complexities of death and dying, emphasizing the significance of social processes. There are discussions of the role of ethnic factors, religion and faith, and a range of social policy responses that shape people’s experience of death and dying. Other influences include how death and dying are dealt with in the family home, community responses, education and the education system, and factors related to the workplace. There is a chapter about how the rituals associated with burial and cremation may prove to be significant in terms of adjusting to major losses, which is followed by a discussion of how humor, music, and the arts can be of benefit. And there is the predictable chapter about the medicalization of all things to do with death and dying, or, in their words, “treated in a narrow way that fails to pay attention to wider cultural and structural factors.”

Looking at the text, there was good use of headings, lots of lists, key point boxes, and exercises. In contrast to the other book on thanatology that I recently tried to review, this one was quite readable.

My only criticism of this book is that it does not discuss euthanasia and physician-assisted suicide. I was rather looking forward to reading the sociology-take on assisted dying, with all its sociological roots and repercussions, but I suspect it was in the too-hard bag.

If you work in hospice and palliative care, there’s no getting away from death and dying.

This book discusses the issues from a slightly different angle (that of sociology) and is a timely reminder that we need to be aware of the full range of issues and not fall into the trap of only paying attention to the medical matters.

Gerry R. Cox is a professor emeritus of sociology and archeology at the University of Wisconsin-La Crosse, and former director of the Center for Death Education & Bioethics, USA. Neil Thompson is an independent writer, educator, and adviser based in Wales.

(Roger Woodruff, December 2020)

My attention was drawn to this book because it was written by a medical oncologist “who has devoted her life to making the unbearable easier to bear.”

The thesis for this book is that we need to radically change our attitude to detecting and treating cancer. The war on cancer that started during the Nixon era has produced little improvement, but at great cost. She advocates that we change from devising new treatments for end stage disease and concentrate on identification and eradication of transformed cancerous cells at their inception; hence the title. And if detected at the earliest stage, treatment would be simpler and less toxic. She makes some good arguments, although they are scattered through the stories about patients.

She states that her ideas should be a source of empowerment for cancer patients, which I did not understand. If you have been diagnosed with cancer, then what she is advocating regarding the earliest possible detection is largely irrelevant.

The bulk of the book is about patients she has treated, including her own husband (also an oncologist) who died of leukemia. There are some insightful descriptions of how patients react and how family members feel, but nothing extraordinary. She makes the point that relatively few patients will accept supportive care/hospice, and accepts how difficult such a change might be for the patient.

That said, I found her style a little difficult to take. A pathology screen for suspected sepsis is “a million dollar workup.” She gushes about how beautiful were the people she met, or how incredibly intelligent they were. She talks about “fantastically” complex diseases. Rather than selecting one adjective, she uses four or six. I did not think it important to know whether she had entertained an internationally known scientist at her dinner table. And I wondered what her lay readers understood when she spoke of “CAR-T,” being chimeric antigen receptor T-cell therapy.

The last chapter is a 20-odd page collection of epitaphs and pieces written by close relatives of patients who were described earlier in the book.

There may be something to be said for her arguments about changing our approach to the detection and treatment of cancer, but it is not something that has been established and its value proven. Somewhere in the book she recalls the saying that an important discovery in science should be followed not by an exclamation mark, but by a semicolon, waiting to see what emanates from the discovery. I think Raza’s ideas should definitely be followed by a semicolon.

Azra Raza, MD, is Professor of Medicine and Director of the Myelodysplastic Syndrome (MDS) Center at Columbia University in New York. She was born and trained in Pakistan.

(Roger Woodruff, January 2021)

Something Different

December 30, 2003. New York City. She and her husband John have just come home from visiting their daughter, Quintana, in ICU on life support because of pneumonia and septic shock. Then John suddenly dies just as she was going to put their dinner on the table.

What follows is a well-written account of authoress Joan Didion’s journey through the first 12 months of grief and bereavement. Struggling to work out what exactly happened, wrestling to come to terms with it. Searching for anything to suggest it was foreseen. Memories. Keeping the dead alive. The autopsy. In discussing grief she delves into both the real literature and into the medical/psychological literature. Then a few months later, Quintana suffers a fall and is hospitalised in Los Angeles with major intracranial bleeding.

For people who work in palliative care, this book provides a story on which to reflect about the problems people have and how we might be able to help them. And it may help other people who find themselves in a similar situation.

And as if the story wasn’t bad enough—Wikipedia tells me that having made progress toward recovery, Quintana died of acute pancreatitis in 2005, aged 39.

(Roger Woodruff, January 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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