2021; Volume 22, No 4, April

25th

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

Rachel Clarke is the palliative care physician who wrote Dear Life (reviewed in the May 2020 Newsletter).

Breathtaking is her story of how people and the health service have responded to COVID-19. In addition to hospice work, she enrols to work in the local acute care hospitals as well, and is well-positioned to report on what is happening on the inside. There are insightful reflections on the impact of COVID—on politicians, on the public health people, on doctors and nurses, and on patients and members of their families.

Some of her stories are quite moving. Patients and families whose greatest concern is that the doctors and nurses caring for them do not get infected. The terminally ill patient in a hospice, who does not wish for hospital care should he contract COVID, but, if infected, is perfectly willing to be sent to hospital if it might reduce the risks to his fellow hospice inpatients. And there is the separation from family and loved ones—the last glance, the last touch—something I experienced the other night. You have coronavirus infection until proven otherwise and will be allowed no visitors until your swabs come back clear, and then only if they are able to move you from the “dirty” part of the ward to the “clean,” and your proposed visitor (only one allowed) is asymptomatic, afebrile, and capable of donning PPE. At least in Oxfordshire they had the decency of allowing a family member to be with a patient who was dying (unimaginable in the COVID dictatorship where I live), although that person has to then spend the first 14 days of their bereavement in self-imposed isolation. And the nurses who refused not to be there with the actively dying, possibly violating some strict COVID code of infection control? Clarke describes it as an act of grace, “a pinpoint of light in these dark times.”

And there are the personal and family issues. Her husband is a commercial pilot flying to and from China; when travel to China is banned, he flies repeatedly to Italy’s worst affected region, Lombardy. And when she develops a febrile illness, she is told she does not meet the NHS criteria for testing…

I enjoyed this book. The uncertainties of the first months of the pandemic are realistically discussed, in contrast to what one heard or read in the general media. The clinical scenarios described feel genuine, which one might have taken for granted given the author is a physician, but it is appreciated. And there is discussion about palliative care for those with coronavirus as well as how to manage palliative care patients who contract the infection.

Rachel Clarke originally read Politics, Philosophy and Economics at the University of Oxford before working as a broadcast journalist making current affairs documentaries. She embarked on Medicine at the age of 29 and now works as a palliative care physician in Oxford.

(Roger Woodruff, February 2021)

Other Reviews

Here is a collection of 15 intimate vignettes that explore the experience of death through the eyes of caregivers. The wife who cannot cope with her husband “giving up.” Dealing with patients who are ingrained “loners.” Managing families long divided. There are issues of forgiveness, acceptance, love, and grace. And a lot more. The last story is about how the quarantines associated with COVID can bring havoc to the difficulties of death and dying.

There is a strong undercurrent of Christian faith in a number of the stories, but I felt it was an entirely appropriate part of her description of the folk in her stories. What I also noticed was the occasional reference to the normality of death.

If you work in palliative care, I think you will enjoy these stories. You will be challenged to think about the management of all sorts of situations, not the least of which is how to best manage those with deeply held religious views.

Myrna Brown is a registered nurse who worked in hospice. She lives in North Carolina, USA.

(Roger Woodruff, January 2021)

This book is addressed to fellow Christian chaplains and discusses how pastoral practices might be improved. Witty cites Elisabeth Kübler-Ross, who in 1969 wrote: “dying nowadays is more gruesome in many ways, namely, more lonely, mechanical, and dehumanized” and expresses her opinion that it seems to have got continually worse since that time.

She describes the normal chaplaincy encounter as the “ministry of presence,” which establishes a fundamental starting point, builds rapport, earns trust, quietly conveys compassion, and ideally offers a non-judgemental safe space. Sounds as though one goes softly with Scriptures, “God talk,” and the like. However, her thesis is that there are a few individuals whose spiritual distress will be better treated with a carefully selected excerpt of Scripture appropriate to his/her needs. This is also described as a need for “Individualized Scripture Plans.” She describes her experiences with a small number of very carefully selected patients (only those self-identifying as Christian, only after at least three “normal” chaplaincy encounters, etc.), some of who seemed to benefit.

The above study concluded in 2018, but Witty has included some comments about the unprecedented pressures that the COVID-19 pandemic has caused for spiritual care and chaplaincy, and even draws some analogies with the bubonic plague.

Sue Witty spent over 10 years as a staff chaplain in an urban hospital Trauma Unit and now works as a chaplain at Compassus Hospice in Willingboro, New Jersey.

(Roger Woodruff, January 2021)

This book is an attempt to set forth the possible choices that we and our loved ones may face in the course of the dying process. It examines both the medical and legal realities and also the options available for decision-making. Morhaim’s goal “is to put you in charge of your care in a way that matches your values and wishes.”

He starts with the old adage that many of us are more afraid of the dying process than death itself. But he warns that if you don’t choose to define your medical care, it will be done for you and you may not like some of the things that happen. This is illustrated by a long saga, with one grisly problem leading to another, each countered by more medication and increasing levels of care that should not have been considered appropriate at the start, when the chances of functional recovery were essentially zero. He goes on to discuss advance directives—what you want (and don’t want) and discussing it with your family—and provides good examples of the statements you might find on advance directive forms. CPR, intubation with artificial ventilation, and parenteral nutrition, together with their associated indignities, are well described. The stories of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo are recalled, emphasising that preparing for a better death is not just about old people. And there is the extra challenge of dementia, for which some people include a dementia provision as an addendum to their advance directive.

Then I came across his discussion about what terminal care doctors and other healthcare professionals want for themselves: “while we may push patients into heroic lifesaving measures, we tend to chose dying at home for ourselves.” Dr Morhaim can speak for himself, but I have no recollection of ever “pushing” a patient in such a manner. The problem is surely that the majority of these patients received no appropriate counselling (including advice to complete an advance directive) and end up on “heroic” treatment by default.

Then I came to the chapter about the legalising assisted dying. The lists of pros and cons were predictable, until I came to “There is no evidence that passing these laws has led to any abuses in the states that have, nor is there any evidence of this from the other countries where assisted dying is allowed.” Perhaps if Dr Morhaim had been personally involved in digging the graves for the 1,000 or so Dutch patients who died of non-voluntary euthanasia each year throughout the 1990s, he might have thought differently. If Dr Morhaim argues that this occurred before legalisation of assisted dying in Holland, he should note the number of deaths from non-voluntary euthanasia was still 400-plus in 2015, which was more than a decade after legalisation. References to many other abuses of assisted dying legislation, all of which must have escaped Dr Morhaim’s attention, are documented in my booklet about euthanasia and physician-assisted suicide on the IAHPC website.

Then it’s back to discussing why more Americans do not have advance directives and useful discussions about other issues to do with death and dying. I thought much of the material in this book was helpful, but I would not recommend it to a patient unless Chapter 8 (on assisted dying) was removed.

Dan Morhaim MD has worked as an emergency medicine physician for 40 years and served for 24 years as a Maryland state legislator. His wife, Shelley, works as a therapeutic music practitioner for hospice and hospital patients.

(Roger Woodruff, February 2021)

This book is a collection of 14 essays, divided into four sections titled The End of Life, Who Decides When to End Life, How to End Life, and Other Parties and the End of Life.

The first section tackles the questions of when and whether a patient may be better off dead. This leads to almost interminable philosophical rumination but it seems judgements about the implications of nonexistence are highly subjective and do not permit generalizations. The harm of death can be seen from two viewpoints—the deprivation account and epicureanism—but, except that the death of a young person is more severe as per the deprivation account, I struggled to find any clinical correlation. Then there is the question of whether all of this is affected by the possibility of an afterlife. The last chapter asks whether patients, kept alive by modern medicine but whose consciousness and personality are forever lost, are still alive. Are there two kinds of death?

The second section asks who gets to decide whether a patient is better off dead. There is discussion of such issues as: what might happen if the patient has diminished competence, how such decisions might be made in advance, and who makes them if the patient cannot. The third section is about the proper way to end the life, once a decision has been made that a patient’s life should no longer continue. Suicide, euthanasia and physician-assisted suicide are discussed and the overriding importance of autonomy stressed. The last section concerns the relationship between the patient and other parties, and explores the ethics of grief and solidarity between the patient and others.

I was left a bit confused and struggled to apply many of their discussions to day-to-day clinical care. I was told that end-of-life ethics was among the first topics to develop when modern medical ethics got going in the early 1970s. But haven’t clinicians been dealing with end-of-life issues for millennia? I do not doubt their sincerity, but it feels like a bit of a trip down Ivory Tower Lane.

John Davis is Professor of Philosophy at California State University, Fullerton. Of the 12 contributors, 10 are from North America, with one each from Sweden and the United Kingdom.

(Roger Woodruff, December 2020)

In the Introduction, I was told “The book’s argument takes the reader from a consideration of existing debates about freedom at the end of life to an understanding of the meaning of freedom in US politics.” I should have stopped there. “Inadequate familial caregiving at the end of life is…a failure of the political structure of the country…” i.e., it is an American crisis. But when he gets down to details, it seems to be more about chronic care, the months or years of care for those incapable of self-care, long before they are actively dying. Such care might be laudable, but might not be included in my definition of hospice care for the terminally ill or dying.

The first chapter discusses the right to die with sections on “PAS as a disability right” and “A choice that prolongs unfreedom.” The second delves into the history of the problems resulting from wishing to deliver better care at less cost, which Braswell blames on the US hospice movement’s dependence on the family. The next looks at the continued escalation of these problems over the last 40 years. Chapter 4 summarises a study done by Braswell in the Atlanta area that showed patients with inadequate familial support either remain in a neglectful home environment or are sent to a nursing home. In Braswell’s terminology: “Both options cause the destruction of their freedoms.” The next chapter discusses the care at Atlanta’s Our Lady of Perpetual Help Home, where freedoms seem more preserved. There is discussion of the current schools of thought when it comes to PAS: pro-life versus pro-choice. The last chapter is about the goals of the movement to change the structure of US hospice care and concludes that “Only by recognizing that the end of life does not begin at the end of life can we solve the crisis of freedom in US hospice care.” The Conclusion, which begins with a six-page saga about a Jewish woman and her deaf daughter, talks of making hospice the foundation of our national identity, which “requires linking the personal and the political: reimagining the relationship between our country and ourselves.”

I remain unsure whether this book was to do with clinical hospice care as I understand it, or was really about personal/US politics, but I’m not going back to try and find out.

Harold Braswell is an assistant professor of health care ethics at St. Louis University, a private Jesuit research university in Missouri, USA.

(Roger Woodruff, February 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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