Hospice Palliative Care Book Reviews &
The Palliative Care Book of the Month
Roger Woodruff, MD
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Book of the Month
IMPROVING CARE FOR THE END-OF-LIFE
A Source Book for Heath Care Managers and Clinicians. Second Edition.
Joanne Lynn, Janice Schuster, Anne Wilkinson and Lyn Simon
Oxford University Press, 2007
RRP £29.99, $US49.95.
If you are responsible for clinical care in a palliative care organization or ward, you don’t need to read this review. Just buy the book and get started!
This is the second edition of the book that tells you how to go about quality improvement (QI) from Joanne Lynn and her team at the Institute for Health Care Improvement. Their work has continued to expand and this edition includes QI stories from a broad range of organizations; it is a little broader in scope and even more organised than the first edition.
Part I of the book is about QI methods, based largely on the rapid-cycle breakthrough approach—the Plan-Do-Study-Act (PDSA) model. Part II focuses on pain and symptom control, better advanced care planning, spiritual and psychosocial support, and improved continuity of care. Part III is about organisational environments that foster better care. Part IV is about QI in caring for patients with specific disorders, including dementia, congestive cardiac failure and chronic obstructive pulmonary disease. There is a very useful 65-page appendix that lists the clinical instruments that can be used to measure just about anything in palliative care.
As with the first edition, this book is immensely practical. It has an infectious energy that leaves you wanting to get out and do something—by next Tuesday! This book belongs on the library shelf in every palliative care organization, but I doubt it will gather much dust.
Director of Palliative Care, Austin Health, Melbourne, Australia
Viking (Penguin) 2007
RRP $AUD35.00. (Not yet listed on Amazon.com or Amazon.co.uk)
Donald Horne (1921-2005) was a well known Australian author and academic who came to prominence in 1964 with the publication of The Lucky Country, an evaluation of Australian society that questioned many attitudes.
Suffering terminal pulmonary fibrosis, Dying is his record of the experience of dying. It is a remarkable journal in which memories of his well-lived years sit alongside his unflinching view of their end. Ever the intellectual, he also recorded his last thoughts on such matters as faith and regret, the rewards of the engaged mind, the Iraq War, and the meaning of democracy, which are included as essays. There is also a poignant memoir of his last few weeks by his wife and long-time editor, Myfanwy.
PALLIATIVE CARE RESUSCITATION
John Wiley, 2006
RRP £25.99, $US55.00, $AU68.95.
This book provides a thorough summary of opinion regarding cardiopulmonary resuscitation (CPR) and Do Not Resuscitate (DNR) orders in palliative care. These issues have engendered much discussion, recently made more complicated in the UK by the passage of the Human Rights Acts 1998. The influences of the patient’s cultural and religious beliefs, the attitudes of the professional carers, and the adequacy of communication are all discussed. Questions of artificial hydration and euthanasia are also touched upon. Written primarily for nurses, this book provides a sound introduction to the issues. I appreciated her rejection of the term ‘client’ when talking about patients.
Reading this book left me wondering whether we, as health care professionals, have allowed ourselves to be pushed around by politicians, lawyers, administrators and other do-gooders. If a patient is dying of disseminated cancer, there should be no question about CPR; it would be futile, and its performance would distress the family, the staff and other patients. So, if the patient and family are informed and understanding of the situation, is there a need to distress them with a discussion regarding a DNR order? I think not. One of my colleagues advocated such patients should not have a DNR order, but an AND order, standing for Allow Natural Death.
TO DIE WELL
Your right to comfort, calm, and choice in the last days of life
Sydney Wanzer and Joseph Glenmullen
Da Capo Press, 2007
RRP $US45.00, £13.99.
This book is written for the lay reader, presumably the patient with a terminal illness or a member of their immediate family. It covers two broad areas. The first is about appropriate life-prolonging therapy with patients with a terminal illness or conditions like irreversible dementia. Some of the examples given beggar belief. Wanzer’s own totally demented, 92 year old mother, with a documented advance directive against invasive procedures, had a cardiac pacemaker inserted and was sentenced to live on for another five years. The totally demented man who had a hip replacement because he had a fractured neck of femur. Etc, etc. I have no problems with the arguments here.
The second issue relates to the need to legalise physician-assisted dying in the face of intolerable suffering and the presence of a terminal illness. Here I have problems. Wanzer correctly states that this is a situation that one might encounter once or only a few times in a professional lifetime, but I am concerned that a patient or family member reading this would assume that their risk of encountering intolerable suffering was high. And who judges ‘intolerable’? Over the years, I have seen hundreds of patients (if not more), referred with intractable symptoms and unrelieved suffering. But with attention to detail and the help of the multidisciplinary team, their symptoms and suffering were brought under good control. So whilst you might entrust someone as experienced as Dr. Wanzer, to give the same powers to all doctors, many of whom have little experience in symptom control or end-of-life treatment, is a concern. He points out that the experience in Oregon shows no evidence of a slippery slope, but I would contend the Dutch have shown otherwise. He does not point out that the intractable suffering of the Oregon patients was largely psychosocial rather than physical/medical. And, of course, the results of public opinion polls are trotted out in support. As in most countries, these are basically ‘Do you want your loved one to die in agony or legalise physician-assisted suicide?’ No one should die in agony, but my experience is that with good palliative care and multidisciplinary support, the incidence of intolerable suffering is extraordinarily low.
I have no doubts about Dr. Wanzer’s sincerity and he has done a lot to advance the discussion on end-of-life issues within the profession. His arguments about appropriate therapy? Long overdue. But physician-assisted dying? Neither necessary nor desirable.
NOTHING LEFT UNSAID
Marlowe and Company, 2006
RRP $US14.95, £7.58
Dr. Polce-Lynch is a developmental psychologist and licensed professional counsellor. This book is about creating a healing legacy, dealing with emotional matters that are not included with the material matters of the last will and testament. It’s about writing Final Words and Legacy Letters. Final words are letters or narratives written for loved ones, to be read after we die. Ideally, these messages should be written when we are well rather than at the end of our life. Final words is a way to honour relationships and can convey ‘expressions of love, affirmation, regret, life lesions, hopes, wishes, forgiveness, personal legacy, blessing and goodbye’. Legacy Letters, conveying similar sentiments, are written to a loved one before his or her death.
We often encourage dying parents to write things down for young children but I agree the practice should be more widespread. However, it is no easy task; close your eyes for a moment and imagine what you would pen in your Final Words. This book provides the what-to-do as well as lots of support and encouragement. It would be a useful volume to have on the hospice library shelf, to loan out to
people we encourage to write such letters.
LIFE AND DEATH IN INTENSIVE CARE
Temple University Press, 2005
RRP $US23.95, £12.99.
End-of-life decision-making and care in the ICU is different from what one experiences in a palliative care unit. Cassell conducted research in ICUs in both the USA and New Zealand and provides insightful assessments of the attitudes of surgeons, intensivists and ICU nurses. She also discusses the role of financial forces in the inadequacy of palliative care delivered by doctors. There is much to reflect on here and the book is a valuable addition to our understanding of palliative care in the ICU and illustrates where improvements are needed.
WE CARRY EACH OTHER
Getting Through Life’s Toughest Times
Eric and Sharon Langshur with Mary Beth Sammons
Conari Press, 2007
This is a collection of stories about people dealing with serious and/or life-threatening illnesses and their families and friends who stood beside them. It is written by Eric and Sharon Langshur, founders of the free, on-line community support, CarePages.com, which boasts an enormous membership. Mary Beth Sammons, who has had an unfortunate incidence of illness and death amongst her family and friends, acts as a kind of narrator. What I liked was that they are encouraging ordinary people, who perhaps ‘don’t know what to do’, to show that they care and how to do it.
SEVEN DAYS OF HOSPICE
D. M. Wilmes
This little book is a gem. It details the last seven days of the life of author Doug Wilmes’ mother, who suffered metastatic breast cancer and was managed at home with the help of the local hospice organization. The detail of Wilmes’ observation is admirable and his interpretation of the emotional responses insightful. This book will provide helpful support to anyone whose loved one has a terminal illness and comes under the care of hospice. My only concern on reading this book has nothing to do with the content—the hospice nurses got excellent marks, but where were the doctors? Forgive me if I missed them, but I didn’t meet either the family physician/general practitioner or the hospice doctor. Perhaps there is a message for those of us that work in palliative care that we need to continue our efforts to educate and involve family physicians/general practitioners.
Director of Palliative Care, Austin Health, Melbourne, Australia
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