A LITTLE BIT OF HEAVEN FOR THE FEW?
An oral history of the modern hospice movement in the United Kingdom
David Clark, Neil Small, Michael Wright, Michelle Winslow, Nic Hughes
Observatory Publications, 2005
239 pp ISBN 0 95441920-0
Available at www.observatory-publications.net or www.amazon.co.uk
This wonderful book is an oral history of the modern hospice movement in the United Kingdom, collected and collated by Professor David Clark and his team. Here are the memories, motivations, the perseverance and the achievements of 80 individuals who helped make the modern hospice movement what it is.
The book is arranged by themes: how and why they became involved with hospice care; the development and expansion of the hospice movement; the development and meaning of team work; the emergence of professional palliative care organizations; the spiritual dimensions of hospice care; the management of physical suffering; the evolution of bereavement care; and, unfinished business.
And the title? Dr. Graham Thorpe of Southampton posed the question “Should we be offering a service to South Hampshire or “a little bit of heaven for the few”?”, underlining the challenges that still remain if all in need are to receive the care they require and deserve.
PSYCHOLOGICAL METHODS OF PAIN CONTROL
Basic Science and Clinical Perspectives
Donald D. Price and M. Catherine Bushnell (Eds)
IASP Press, 2004
308pp ISBN 0-931092-52-3
The involvement of psychological factors in the perception of pain has been recognized since antiquity. Aristotle alluded to the concept that pain was a somatopsychic phenomenon when he described it as a ‘passion of the soul’. This book reviews our rapidly increasing understanding of the psychoneurophysiological mechanisms involved in pain modulation and their potential use in clinical therapy.
The first section addresses how general factors modulate pain, including personality and demographic, environmental and psychological factors. The second section deals with specific psychological factors that modulate pain such as attention and emotions, and environmental and behavioural factors. The next section is about placebo analgesia, which makes most interesting reading. As our knowledge of the psychoneurophysiological mechanisms increases, I was left wondering whether placebo analgesics might become part of standard therapy in certain defined situations and be accepted as ethically correct. The last section details what we know about the psychoneurophysiological mechanisms and clinical applications of hypnotic analgesia.
This is an up to date review of both the basic science of the psychoneurophysiological mechanisms involved in the modulation of pain and their present and possible future applications in the clinic, and should be of interest to both researchers and clinicians.
The case for palliative care and patient choice
Timothy E. Quill and Margaret P. Battin (Eds)
Johns Hopkins University Press, 2004
342 pp ISBN 0-8018-8070-X
RRP US$26.95, £19.50
This book was compiled in response to the volume edited by Kathleen Foley and Herbert Hendin (The Case Against Assisted Suicide; For the Right to End-of-Life Care, Johns Hopkins University Press, 2002; see review) and to stress what the authors see as the positive aspects of Physician-Assisted Dying.
The tone is set in the introduction. Those in favor of Physician-Assisted Dying champion the causes of patient autonomy, mercy (the relief of pain and suffering), and patient non-abandonment (all very positive), whilst those who oppose it are worried about the wrongness of killing, diminished integrity of physicians, and the risk of abuse (all very negative).
The book is divided into four parts. The first examines the critical values of autonomy and mercy. The second explores the clinical, philosophical, and religious issues that underlie end-of-life practices. Part three examines practice in Oregon and the Netherlands . The last section deals with some of the legal and political turmoil that has surrounded the debate on Physician-Assisted Dying in the United States.
The opening chapter by Marcia Angell in an impassioned statement, based around the tragic circumstances of her father’s suicide, that Physician-Assisted Dying should be legalized and that “many people would choose [it]”. But in Chapter 11, where Linda Ganzini reviews the Oregon data, it is seen that only between one-third and one-half of one percent of patients dying of cancer in Oregon have availed themselves of the State’s legalized Physician-Assisted Dying.
The chapter on patient autonomy deals with just that, and does not adequately address what effect legalizing Physician-Assisted Dying might have on the autonomy and rights of other people in society.
There are several chapters that discuss the Dutch practices, focusing particularly on the one thousand patients a year who are euthanized without specific request. [The fact that, according to the figures published by the Dutch, the incidence of non-voluntary euthanasia is a multiple of that number is not discussed]. But back to the one thousand. We are told that these patients had either expressed a wish for euthanasia at some time in the past (current wishes were not important) or they were incompetent. That’s not what the published data says. We are also told “In a number of cases [in which patients were euthanized without explicit request] the decision had been discussed with the patient.” That’s a new twist.
Mention is made in several chapters that, as a result of the open and honest system they have, the incidence of non-voluntary euthanasia is lower in The Netherlands than in other less advanced countries, including Australia . These studies (e.g. Kuhse et al) are based on deliberately ambiguous questions that have been publicly discredited. I received a questionnaire last year, based on the Dutch format, for the International Collaborative Study on End-of-Life Decisions in Medical Practice. It asked the question regarding a patient in pain “Would you intensify the alleviation of symptoms by using drugs, taking into account the possibility or certainty that this could hasten the end of the patient’s life?” So a good doctor, practicing good medicine, carefully titrating drugs to improve patient comfort, could or would be recorded as taking active steps to hasten death. So much for all those reports.
This is a worthwhile book and, given that any discussion has more than one side, I would recommend it to anybody with an interest in the debate about Euthanasia and Physician-Assisted Dying. But it did nothing to change my views, particularly about the Dutch practices. There are repeated references throughout the book that, if you just think about it properly, there is really no difference between hastening death and letting die. Death is a natural end to a life and will come to us all. Killing is something else. Or that’s what I think.
20:20 VISION – THE SHAPE OF THE FUTURE FOR PALLIATIVE CARE
The National Council for Palliative Care, 2005
Available from www.ncpc.org.uk
This booklet is the report of progress to date of 20:20 Vision, The National Council for Palliative Care’s group charged with the task of identifying what the palliative care needs of society will be in 20 years time and developing long-term policy to meet those needs. The material is presented as eight themes: Demographic change—An ageing society/Grey power and consumerism/Workforce changes/Cultural and ethnic diversity/Epidemiological change/A society engaged with its health?/Living alone and in communities/Invigorating civil society.
Whilst written for Palliative Care in the United Kingdom, most of the issues discussed are generic and would apply to the future development of palliative care in any developed society. The material is well presented and is thought-provoking. I had wondered whether the politically-correct march to consumerism in health care was really an advance or not, and noted with interest the recent Lancet editorial (April 30) that said “The strategic mistake made by politicians is to put the patient before everything else in the quest to achieve effective health care.” At £10, this booklet is not cheap but I think it will be of use to anyone who is involved with policy development for the palliative care services of the future.
Medical Oncologist and Director of Palliative Care,
Austin Health, Melbourne, Australia