Consultant Editor Bridget Johnston Acting Editor Julie Smith Commercial Manager Barry Maguire Associate Publisher, Medical Education Tracy Cowan Associate Publisher Julie Smith Publishing Director Anthony Kerr Production Manager Jon Redmayne Circulation Director Sally Boettcher Managing Director Jon Benson 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, Kids Cancer Centre, Sydney Children’s Hospital Jane Phillips Professor Palliative Nursing, The Cunningham Centre for Palliative Care Sydney, Sacred Heart Hospice, and The University of Notre Dame Australia BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp 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 Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18 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
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 Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, 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 Harvard-wide Pediatric Health Services Research Fellow, Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital Patricia Berry Associate Professor and Associate Director, University of Utah Hartford Center of Geriatric Nursing Excellence, University of Utah College of Nursing
UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
UK Personal subscription rates Quarterly Direct Debit Annual Direct Debit Annual Credit Card 2yr Annual Credit Card 3yr Annual Credit Card
£45 £179 £188 £320 £451
Subscribe online: www.magsubscriptions.com, Subscribe by phone: +44 (0) 1722 716997 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
© 2014 MA Healthcare Ltd
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 10
Editorial
A service verses an approach: the importance of building primary palliative care
N
urses across all specialities are uniquely placed to positively contribute to addressing the many unmet needs that patients and their families have at the end of life. Over the past three decades there have been many positive developments as a result of the global emergence of specialist palliative care services. These services have raised the profile of best end-of-life care practices and afforded comfort and dignity to many people. However, the downside is that palliative care has in many ways become synonymous with a ‘service’ as opposed to being an ‘approach to care’ that can be provided by the patient’s usual care team. As a consequence there is a perception in many countries that ‘everyone who needs palliative care’ ought to be cared for by a specialist palliative care team and that palliative care is reserved for people who are in the last weeks or days of life. Neither of which is correct or particularly helpful, especially for the many patients and families who would benefit from the introduction of a palliative approach to care earlier in their illness trajectory. Unfortunately, this perception effectively limits the input of the team that probably knows the patients and their families best: that is, their usual care team. However, as specialist palliative nurses we need to be supporting and promoting the development of the patients’ primary palliative care team to provide a palliative approach which will enable them to: identify and address the patients’ and carers’ unmet needs; manage their symptoms; minimise carer burden, clarify goals of care and align treatment, as well as determining when other specialist or palliative care input is indicated. The adoption of a palliative approach allows the primary palliative care team to maximise the quality of life for people with advanced chronic conditions and facilitate joint decision-making about future care. Building the primary palliative care teams’ palliative approach capabilities requires positive public policy that supports and rewards the delivery of a population-based approach to palliative care by specialist services. This policy should include a reorientation of specialist services so they focus their attention on patients and families with the most complex palliative care needs and are better able to support primary palliative care providers to provide a palliative approach. Building the capacity of primary palliative care teams globally is crucial to extending the reach of palliative care so that more patients and their families will have their constellation of physical, psychosocial and spiritual needs addressed in a timely manner by the team that knows them best. The integration of palliative approach learning content into undergraduate curricula is important in terms of better preparing the emerging nursing workforce to feel confident to respond to their patients’ palliative care needs. The contribution that nurses working outside of specialist settings are making to the provision of primary palliative care must be acknowledged. Gaining insights into their experiences, needs and an improved understanding of the challenges they face helps specialist palliative care nurses to be better equipped to support our colleagues in their primary palliative care roles and to build their palliative care capabilities. This in turn, allows specialist palliative care nurses to focus their attention on caring for patients and families with the most complex palliative care needs, regardless of JPN age, diagnosis or care setting. I●
Jane Phillips Professor of Nursing (Palliative Care), Director, Centre for Cardiovascular and Chronic Care, University of Technology, Sydney
471
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 24, 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, Kids Cancer Centre, Sydney Children’s Hospital Jane Phillips Professor Palliative Nursing, The Cunningham Centre for Palliative Care Sydney, Sacred Heart Hospice, and The University of Notre Dame Australia BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp 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 Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18 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
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 Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, 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 Harvard-wide Pediatric Health Services Research Fellow, Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital Patricia Berry Associate Professor and Associate Director, University of Utah Hartford Center of Geriatric Nursing Excellence, University of Utah College of Nursing
UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
UK Personal subscription rates Quarterly Direct Debit Annual Direct Debit Annual Credit Card 2yr Annual Credit Card 3yr Annual Credit Card
£45 £179 £188 £320 £451
Subscribe online: www.magsubscriptions.com, Subscribe by phone: +44 (0) 1722 716997 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
© 2014 MA Healthcare Ltd
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 10
Editorial
A service verses an approach: the importance of building primary palliative care
N
urses across all specialities are uniquely placed to positively contribute to addressing the many unmet needs that patients and their families have at the end of life. Over the past three decades there have been many positive developments as a result of the global emergence of specialist palliative care services. These services have raised the profile of best end-of-life care practices and afforded comfort and dignity to many people. However, the downside is that palliative care has in many ways become synonymous with a ‘service’ as opposed to being an ‘approach to care’ that can be provided by the patient’s usual care team. As a consequence there is a perception in many countries that ‘everyone who needs palliative care’ ought to be cared for by a specialist palliative care team and that palliative care is reserved for people who are in the last weeks or days of life. Neither of which is correct or particularly helpful, especially for the many patients and families who would benefit from the introduction of a palliative approach to care earlier in their illness trajectory. Unfortunately, this perception effectively limits the input of the team that probably knows the patients and their families best: that is, their usual care team. However, as specialist palliative nurses we need to be supporting and promoting the development of the patients’ primary palliative care team to provide a palliative approach which will enable them to: identify and address the patients’ and carers’ unmet needs; manage their symptoms; minimise carer burden, clarify goals of care and align treatment, as well as determining when other specialist or palliative care input is indicated. The adoption of a palliative approach allows the primary palliative care team to maximise the quality of life for people with advanced chronic conditions and facilitate joint decision-making about future care. Building the primary palliative care teams’ palliative approach capabilities requires positive public policy that supports and rewards the delivery of a population-based approach to palliative care by specialist services. This policy should include a reorientation of specialist services so they focus their attention on patients and families with the most complex palliative care needs and are better able to support primary palliative care providers to provide a palliative approach. Building the capacity of primary palliative care teams globally is crucial to extending the reach of palliative care so that more patients and their families will have their constellation of physical, psychosocial and spiritual needs addressed in a timely manner by the team that knows them best. The integration of palliative approach learning content into undergraduate curricula is important in terms of better preparing the emerging nursing workforce to feel confident to respond to their patients’ palliative care needs. The contribution that nurses working outside of specialist settings are making to the provision of primary palliative care must be acknowledged. Gaining insights into their experiences, needs and an improved understanding of the challenges they face helps specialist palliative care nurses to be better equipped to support our colleagues in their primary palliative care roles and to build their palliative care capabilities. This in turn, allows specialist palliative care nurses to focus their attention on caring for patients and families with the most complex palliative care needs, regardless of JPN age, diagnosis or care setting. I●
Jane Phillips Professor of Nursing (Palliative Care), Director, Centre for Cardiovascular and Chronic Care, University of Technology, Sydney
471
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 24, 2015. For personal use only. No other uses without permission. . All rights r
