PATIENT PARTICIPATION IN PALLIATIVE CARE
A Voice for the Voiceless
Barbara Monroe and David Oliviere (Editors)
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Oxford University Press, 2003
206pp
ISBN 0198515812
RRP £24.95 $US 39.95
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This book explores the meaning, purposes, value and delivery of person-centered care in palliative care. Person-centered care has always been
a central tenet for effective palliative care, but this book asks the question whether we are really delivering it or just paying lip service to it.
The first part of the book describes the contribution made by the involvement of patients and their carers in the development of
palliative care. Involvement of patients and their carers has, and can, lead to improvements in all aspects of hospice and palliative care from planning to quality assessment, from accessibility
to acceptability. The value of “user organizations” is discussed, although it is not clear how one would obtain any continuity of input from such groups if they meet, say, every four months,
when the average life expectancy of the participants is less than that.
In the second part of the book, various members of the palliative care team describe what their particular professional group is,
or should be, doing to optimize person-centered care. The section, “How not to be patient focused” will serve as a wake-up call for physicians who never have enough hours in the day, and the
following chapters have similar messages for other members of the team.
I am not sure that I agree with the subtitle of this book “A voice for voiceless”. “Voiceless” implies that our patients and their
carers are disadvantaged or disenfranchised. Perhaps that was true in 1967 when Cicely Saunders opened St. Christopher’s Hospice, but one would hope that it is much less today.
This book is a timely reminder that we need to remain patient focused, and that patient centered care must not be lost or obscured
by advances in palliative medicine or by the increasingly informed and multicultural societies in which we work. The book should be of interest to all members of the palliative care team, and
particularly to those involved in management and quality assurance.
Roger Woodruff
Director of Palliative Care, Austin Health, Melbourne, Australia
Past Chairman, IAHPC
September 2003
Author Information
Barbara Munroe is Chief Executive, St. Christopher’s Hospice, Sydenham, London, UK.
David Oliviere is Director of Education and Training, St. Christopher’s Hospice, Sydenham, London, UK.
Table of Contents
Part 1: The Role of the Patient in Palliative Care
1. A voice for the voiceless
Saunders
2. The changing National Health Service, user involvement and palliative care
Small
3. Developments in user organisations
Bradburn:
4. Quality issues in palliative and supportive care
Ahmedzai and Hunt
5. Education in palliative care
Davie & Noble
6. Cultural difference and palliative care
Nunez Olarte:
7. Bereavement care
Relf
Part 2: Multi-professional perspectives
8. Multi-professional teamwork
Firth
9. Palliative medicine
Gilbert
10. Palliative nursing
Stratford
11. Palliative care social work
Napier
12. Palliative care and chaplaincy
Speck
13. Palliative care and psychology
Kalus
14. Conclusions
Lishman
15. Conclusions: thoughts of a palliative care user
Broughton
Index
