Editorial Consultant Editor Bridget Johnston Editor Craig Nicholson Commercial Executive Barry Maguire Associate Publisher, Medical Education Tracy Cowan Associate Publisher Julie Smith Publisher Anthony Kerr Production Manager Jon Redmayne Circulation Director Sally Boettcher Chief Executive Officer Ben Allen Editorial enquiries: [email protected] Sales enquiries: [email protected]
Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/Palliative Care, Prince of Wales Children’s Hospital, New South Wales Kate White Professor Cancer Nursing, Sydney Nursing School, Royal Prince Alfred Hospital, The University of Sydney BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp, Belgium EIRE Philip Larkin Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice Ltd, Health Sciences Centre, University College Dublin, Ireland Julie Ling HRB Research Fellow, School of Nursing and Midwifery, Trinity College, Dublin 2 HONG KONG Cecilia Chan Professor and Director, Centre of Behavioural Health, Pokfulam NORTHERN IRELAND Sonja McIlfatrick Reader, Institute of Nursing Research, University of Ulster; Head of Research, All Ireland Institute of Hospice & Palliative Care UGANDA Julia Downing Honorary Professor in Palliative Care, Makerere University, Kampala UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
Bridget Johnston Reader in Palliative Care, University of Dundee, School of Nursing and Midwifery, Dundee Daniel Kelly Royal College of Nursing Professor of Nursing Research, School of Nursing & Midwifery Studies, Cardiff University Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, The Christe NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London UNITED STATES Jennifer Baird Doctoral Candidate, Department of Family Health Care Nursing, National Institute of Nursing Research NRSA Fellow, University of California, San Francisco Patricia Berry Associate Professor and Associate Director, University of Utah Hartford Center of Geriatric Nursing Excellence, University of Utah College of Nursing
UK Personal subscription rates Quarterly Direct Debit Annual Direct Debit Annual Credit Card 2yr Annual Credit Card 3yr Annual Credit Card
£44 £174 £183 £312 £440
Subscribe online: www.magsubscriptions.com, Subscribe by phone: +44 (0) 1722 716997
© © 2013 2013 MA MA Healthcare Healthcare Ltd Ltd
The International Journal of Palliative Nursing is published by MA Healthcare Ltd, St Jude’s Church, Dulwich Road, London SE24 0PB Tel: +44 (0)20 7738 5454 Websites: www.ijpn.co.uk
MA Healthcare Ltd is part of the Mark Allen Group
www.markallengroup.com
International Journal of Palliative Nursing is indexed on Medline, CINAHL, and the British Nursing Index © MA Healthcare Ltd, 2013. All rights reserved. No part of the International Journal of Palliative Nursing may be reproduced, stored in a retrieval system, or transmitted in any form or by any means electronic, mechanical, photocopying, recording, or otherwise without prior written permission of the Publishing Director.
Choice in palliative care: why more is still more
M
odern living is beset by choice; some of us can spend days deciding on a career choice, hours searching the internet reviews of a product we wish to buy, and many minutes even deliberating over which bread to purchase. In his 2005 book The Paradox of Choice: Why More Is Less, the American psychologist Barry Schwartz argued that reducing consumer choices can lessen anxiety for customers, which seems somewhat paradoxical when the market economies of the world strive to offer us ever more choice in any and every aspect of our lives. Nevertheless, while the constant demands of decision-making in both the routine and prosaic shopping choices and the more profound and complex judgments in our lives might be a source of unceasing unnecessary tension, choice is rightly the watchword for modern health care. In recent decades we have moved on from the opinion and practice that the paternalistic and beneficent professional knows best and should make choices for the patient; in a representative and egalitarian society, we promote self-governance and freedom of choice, knowing that the vast majority of patients value having the ability to decide on their health-care needs, even if some practitioners have personal misgivings or misguided perceptions of the value or validity of choice to that individual, or if the decision is unavoidably difficult. The importance of choice in palliative care was highlighted earlier this year with the production of the British Social Attitudes Survey data, which suggested that two thirds of people would prefer to die at home and that hardly anyone wishes to die in hospital (Park et al, 2013). According to a recent report on end-of-life care, thankfully we are moving toward the realisation of this prospect in England; the proportion of people dying at home or in care homes increased from 38% in 2008 to 44% in 2012 (National End of Life Care Intelligence Network, 2013). This suggests that around 24 000 more people died at home or in care homes in 2012 compared with 4 years ago. Nonetheless, the report identifies some facets of patient experience that we are obliged to improve, including the disparity in the proportion of deaths in hospital across the nation between 2009 and 2011, where some authorities saw rates of 38% and others 69%. The report also noted that the standard and quality of care of the dying in hospitals also needs to be addressed. The commonality of the human condition might suggest that such preferences are replicated around the world. Sadly, the ongoing review of the state of palliative care around the globe in this journal’s Web Words feature suggests that many people and communities lack the opportunity to make even the most rudimentary choices around palliative care services and support. Jean-Paul Sartre suggested that ‘We are our choices’. When faced with the inescapable circumstance of our death, many of us want to choose how and where we will die, but for too many the choice, if any, remains stark. All patients with palliative care needs, regardless of diagnosis, should have access to high-quality personal care, regardless of location, social status, or professional misconceptions, and advocating and assisting people to realise their choices and preferences for care JPN is an essential nursing role. Il
Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University
ISSN 1357-6321 Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA The paper used within this publication has been sourced from Chain-of-Custody certified manufacturers, operating within international environmental standards, to ensure sustainable sourcing of the raw materials, sustainable production and to minimise our carbon footprint.
International Journal of Palliative Nursing 2013, Vol 19, No 11
National End of Life Care Intelligence Network (2013) What we know now 2013. www.endoflifecareintelligence.org.uk/resources/publications/what_we_know_now_2013 (accessed 8 November 2013) Park A, Bryson C, Clery E, Curtice J, Phillips M (eds) (2013), British Social Attitudes: the 30th Report. NatCen Social Research, London Schwartz B (2005) The Paradox of Choice: Why More Is Less. Harper Perennial, New York
523
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights r
Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/Palliative Care, Prince of Wales Children’s Hospital, New South Wales Kate White Professor Cancer Nursing, Sydney Nursing School, Royal Prince Alfred Hospital, The University of Sydney BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp, Belgium EIRE Philip Larkin Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice Ltd, Health Sciences Centre, University College Dublin, Ireland Julie Ling HRB Research Fellow, School of Nursing and Midwifery, Trinity College, Dublin 2 HONG KONG Cecilia Chan Professor and Director, Centre of Behavioural Health, Pokfulam NORTHERN IRELAND Sonja McIlfatrick Reader, Institute of Nursing Research, University of Ulster; Head of Research, All Ireland Institute of Hospice & Palliative Care UGANDA Julia Downing Honorary Professor in Palliative Care, Makerere University, Kampala UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
Bridget Johnston Reader in Palliative Care, University of Dundee, School of Nursing and Midwifery, Dundee Daniel Kelly Royal College of Nursing Professor of Nursing Research, School of Nursing & Midwifery Studies, Cardiff University Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, The Christe NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London UNITED STATES Jennifer Baird Doctoral Candidate, Department of Family Health Care Nursing, National Institute of Nursing Research NRSA Fellow, University of California, San Francisco Patricia Berry Associate Professor and Associate Director, University of Utah Hartford Center of Geriatric Nursing Excellence, University of Utah College of Nursing
UK Personal subscription rates Quarterly Direct Debit Annual Direct Debit Annual Credit Card 2yr Annual Credit Card 3yr Annual Credit Card
£44 £174 £183 £312 £440
Subscribe online: www.magsubscriptions.com, Subscribe by phone: +44 (0) 1722 716997
© © 2013 2013 MA MA Healthcare Healthcare Ltd Ltd
The International Journal of Palliative Nursing is published by MA Healthcare Ltd, St Jude’s Church, Dulwich Road, London SE24 0PB Tel: +44 (0)20 7738 5454 Websites: www.ijpn.co.uk
MA Healthcare Ltd is part of the Mark Allen Group
www.markallengroup.com
International Journal of Palliative Nursing is indexed on Medline, CINAHL, and the British Nursing Index © MA Healthcare Ltd, 2013. All rights reserved. No part of the International Journal of Palliative Nursing may be reproduced, stored in a retrieval system, or transmitted in any form or by any means electronic, mechanical, photocopying, recording, or otherwise without prior written permission of the Publishing Director.
Choice in palliative care: why more is still more
M
odern living is beset by choice; some of us can spend days deciding on a career choice, hours searching the internet reviews of a product we wish to buy, and many minutes even deliberating over which bread to purchase. In his 2005 book The Paradox of Choice: Why More Is Less, the American psychologist Barry Schwartz argued that reducing consumer choices can lessen anxiety for customers, which seems somewhat paradoxical when the market economies of the world strive to offer us ever more choice in any and every aspect of our lives. Nevertheless, while the constant demands of decision-making in both the routine and prosaic shopping choices and the more profound and complex judgments in our lives might be a source of unceasing unnecessary tension, choice is rightly the watchword for modern health care. In recent decades we have moved on from the opinion and practice that the paternalistic and beneficent professional knows best and should make choices for the patient; in a representative and egalitarian society, we promote self-governance and freedom of choice, knowing that the vast majority of patients value having the ability to decide on their health-care needs, even if some practitioners have personal misgivings or misguided perceptions of the value or validity of choice to that individual, or if the decision is unavoidably difficult. The importance of choice in palliative care was highlighted earlier this year with the production of the British Social Attitudes Survey data, which suggested that two thirds of people would prefer to die at home and that hardly anyone wishes to die in hospital (Park et al, 2013). According to a recent report on end-of-life care, thankfully we are moving toward the realisation of this prospect in England; the proportion of people dying at home or in care homes increased from 38% in 2008 to 44% in 2012 (National End of Life Care Intelligence Network, 2013). This suggests that around 24 000 more people died at home or in care homes in 2012 compared with 4 years ago. Nonetheless, the report identifies some facets of patient experience that we are obliged to improve, including the disparity in the proportion of deaths in hospital across the nation between 2009 and 2011, where some authorities saw rates of 38% and others 69%. The report also noted that the standard and quality of care of the dying in hospitals also needs to be addressed. The commonality of the human condition might suggest that such preferences are replicated around the world. Sadly, the ongoing review of the state of palliative care around the globe in this journal’s Web Words feature suggests that many people and communities lack the opportunity to make even the most rudimentary choices around palliative care services and support. Jean-Paul Sartre suggested that ‘We are our choices’. When faced with the inescapable circumstance of our death, many of us want to choose how and where we will die, but for too many the choice, if any, remains stark. All patients with palliative care needs, regardless of diagnosis, should have access to high-quality personal care, regardless of location, social status, or professional misconceptions, and advocating and assisting people to realise their choices and preferences for care JPN is an essential nursing role. Il
Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University
ISSN 1357-6321 Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA The paper used within this publication has been sourced from Chain-of-Custody certified manufacturers, operating within international environmental standards, to ensure sustainable sourcing of the raw materials, sustainable production and to minimise our carbon footprint.
International Journal of Palliative Nursing 2013, Vol 19, No 11
National End of Life Care Intelligence Network (2013) What we know now 2013. www.endoflifecareintelligence.org.uk/resources/publications/what_we_know_now_2013 (accessed 8 November 2013) Park A, Bryson C, Clery E, Curtice J, Phillips M (eds) (2013), British Social Attitudes: the 30th Report. NatCen Social Research, London Schwartz B (2005) The Paradox of Choice: Why More Is Less. Harper Perennial, New York
523
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights r
