Editorial Consultant Editor Bridget Johnston Editor Craig Nicholson Commercial Executive Barry Maguire Editorial Manager Aysha Mendes 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
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham
Kate White Professor Cancer Nursing, Sydney Nursing School, Royal Prince Alfred Hospital, The University of Sydney
Daniel Kelly Royal College of Nursing Professor of Nursing Research, School of Nursing & Midwifery Studies, Cardiff University
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
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
Julie Ling Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18
Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University
HONG KONG Cecilia Chan Professor and Director, Centre of Behavioural Health, Pokfulam
Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London
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
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
© © 2014 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, 2014. 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. 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 2014, Vol 20, No 1
The challenges of providing quality palliative care to all
W
elcome to the 20th volume of the International Journal of Palliative Nursing, marking 19 years of the journal. We have in so many respects come such a long way in palliative nursing since that first issue. Notable changes include the marked proliferation of palliative care around the world, advances in pain and symptom control, improvements in nursing roles, refinements of the definition and scope of palliative care, and growth in the number of education courses and their methods and means of delivery. The amount of research being undertaken into many different aspects of palliative care has also increased enormously. Yet we are still faced with many challenges. For instance, there are many areas of the world where access to palliative care remains severely limited. This is highlighted in the Prague Charter—the campaign from the European Association for Palliative Care (EAPC) and four other international organisations to make palliative care a human right. The campaign argues that: ‘In certain cases where patients face severe pain, failure to provide palliative care can [...] constitute cruel, inhuman or degrading treatment. Palliative care can effectively relieve or even prevent this suffering and can be provided at comparably low cost. Yet, the governments of many countries throughout the world have not taken steps to ensure patients can realize this right’ (EAPC, 2012). Governments and health professionals around the world also still face challenges in delivering palliative care to marginalised groups, including people with learning difficulties, people with dementia, people who are socially or economically deprived, and the frail elderly—a group we still cannot define appropriately in terms of personcentred dimensions. These are all areas into which the team I work with at the University of Nottingham have been carrying out research. The issue of generalist vs specialist settings and generalist vs specialist nurses also continues to be challenging. In many ways the decision to classify palliative care in this way has not proved helpful. Whatever their setting and whatever their illness, patients deserve equitable access to palliative care. Indeed, entrepreneur Tim Ferris has argued that the phrase ‘Jack of all trades, master of none’ is an artificial pairing: ‘It is entirely possible to be a jack of all trades, master of many. [...] Specialists overestimate the time needed to “master” a skill and confuse “master” with “perfect”. [...] In a world of dogmatic specialists, it’s the generalist who ends up running the show’ (Ferris, 2007). Although this may not be the case with palliative care, if we expanded education and the development of skills, knowledge, and effective communication to many more, arguably the impact on practice would be bigger and quality palliative care more equitably spread than in our current times of high specialisation. Indeed, Dame Cicely Saunders stated that her ultimate vision for hospices was ‘moving out of the NHS so that attitudes and knowledge (regarding care of the dying) could move back in’ (Saunders, 1991/2). I would like you to consider whether Dame Cicely’s vision has been realised. And what will palliative nursing look like by our 40th volume? Il JPN
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham European Association for Palliative Care (2012) The Prague Charter. www.eapcnet.eu/Themes/Policy/ PragueCharter.aspx (accessed 17 January 2014) Ferris T (2007) The top 5 reasons to be a jack of all trades. www.huffingtonpost.com/tim-ferriss/thetop-5-reasons-to-be-a_b_65847.html (accessed 17 January 2014) Saunders C (1991/2) The Evolution of The Hospices. Free Inquiry 12: 19–231
3
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 25, 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
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham
Kate White Professor Cancer Nursing, Sydney Nursing School, Royal Prince Alfred Hospital, The University of Sydney
Daniel Kelly Royal College of Nursing Professor of Nursing Research, School of Nursing & Midwifery Studies, Cardiff University
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
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
Julie Ling Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18
Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University
HONG KONG Cecilia Chan Professor and Director, Centre of Behavioural Health, Pokfulam
Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London
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
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
© © 2014 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, 2014. 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. 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 2014, Vol 20, No 1
The challenges of providing quality palliative care to all
W
elcome to the 20th volume of the International Journal of Palliative Nursing, marking 19 years of the journal. We have in so many respects come such a long way in palliative nursing since that first issue. Notable changes include the marked proliferation of palliative care around the world, advances in pain and symptom control, improvements in nursing roles, refinements of the definition and scope of palliative care, and growth in the number of education courses and their methods and means of delivery. The amount of research being undertaken into many different aspects of palliative care has also increased enormously. Yet we are still faced with many challenges. For instance, there are many areas of the world where access to palliative care remains severely limited. This is highlighted in the Prague Charter—the campaign from the European Association for Palliative Care (EAPC) and four other international organisations to make palliative care a human right. The campaign argues that: ‘In certain cases where patients face severe pain, failure to provide palliative care can [...] constitute cruel, inhuman or degrading treatment. Palliative care can effectively relieve or even prevent this suffering and can be provided at comparably low cost. Yet, the governments of many countries throughout the world have not taken steps to ensure patients can realize this right’ (EAPC, 2012). Governments and health professionals around the world also still face challenges in delivering palliative care to marginalised groups, including people with learning difficulties, people with dementia, people who are socially or economically deprived, and the frail elderly—a group we still cannot define appropriately in terms of personcentred dimensions. These are all areas into which the team I work with at the University of Nottingham have been carrying out research. The issue of generalist vs specialist settings and generalist vs specialist nurses also continues to be challenging. In many ways the decision to classify palliative care in this way has not proved helpful. Whatever their setting and whatever their illness, patients deserve equitable access to palliative care. Indeed, entrepreneur Tim Ferris has argued that the phrase ‘Jack of all trades, master of none’ is an artificial pairing: ‘It is entirely possible to be a jack of all trades, master of many. [...] Specialists overestimate the time needed to “master” a skill and confuse “master” with “perfect”. [...] In a world of dogmatic specialists, it’s the generalist who ends up running the show’ (Ferris, 2007). Although this may not be the case with palliative care, if we expanded education and the development of skills, knowledge, and effective communication to many more, arguably the impact on practice would be bigger and quality palliative care more equitably spread than in our current times of high specialisation. Indeed, Dame Cicely Saunders stated that her ultimate vision for hospices was ‘moving out of the NHS so that attitudes and knowledge (regarding care of the dying) could move back in’ (Saunders, 1991/2). I would like you to consider whether Dame Cicely’s vision has been realised. And what will palliative nursing look like by our 40th volume? Il JPN
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham European Association for Palliative Care (2012) The Prague Charter. www.eapcnet.eu/Themes/Policy/ PragueCharter.aspx (accessed 17 January 2014) Ferris T (2007) The top 5 reasons to be a jack of all trades. www.huffingtonpost.com/tim-ferriss/thetop-5-reasons-to-be-a_b_65847.html (accessed 17 January 2014) Saunders C (1991/2) The Evolution of The Hospices. Free Inquiry 12: 19–231
3
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 25, 2015. For personal use only. No other uses without permission. . All rights r
