Consultant Editor Bridget Johnston Editor Jennifer Franklin 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.
Editorial
Talking about death
F
or many of us, the phrase ‘there’s something I’ve been dying to tell you’ is no more than a casual colloquial aside, common enough conversational hyperbole maybe, where we often overstate our enthusiasm for the latest gossip, or the importance of an anecdote we can’t wait to share. For the actress and television presenter Lynda Bellingham, such choice words proved more meaningfully inspired and, perhaps, ultimately inspirational for many, as they form the title of her autobiography, which was written in the months after being diagnosed with advanced colorectal cancer last year. She died last month, unfortunately before she celebrated the Christmas she longed to share with her family; however, the memoir published in October, documents in part her experience of hospitalisation, treatment and living with a terminal illness. In August of this year, she announced openly that she had declined further chemotherapy with ‘relief’, accepting that this could shorten her life but acknowledging that she had ‘taken back control’ which she felt she’d lost during her illness. Her public decision, and the subsequent book detailing her thoughts and attitude, surprised some, and saddened many, but has allowed many more people within the broader society to consider and converse about something that is as inevitable as taxes but more easily avoided: talking about death. Much of the public and political dialogue about death and dying in recent times has focussed rightly on the dispute and deliberations about assisted suicide, since such a topic challenges the very fabric of a society. Arguably for some, it may seem an anomaly in the law that it is acceptable for an individual to refuse treatment–a decision that might ultimately lead to death–but affording people other choices over circumstances of their ultimate demise is not. Nevertheless, Ms Bellingham’s choice provides us all with the necessary opportunity to reflect upon the personal control and command that we can all exert over our lives, and our inetivable deaths, within the context of the law. We don’t have to be dying to consider issues such as writing wills or recording our wishes and intentions for end-of-life care. However, whilst the findings of the recent British Social Attitudes Survey (Park et al, 2013) suggest that the majority of people (70%) felt at ease talking about dying, more than one in ten indicated that they remain uncomfortable with the subject. Equally, the willingness to discuss their preferences does not necessarily translate into pragmatic discussion and actual planning. Only 5% of the sample had a living will or advance care plan, and only one in ten had documented plans for their funeral. Similar figures are also found in America via the Pew Research Centre’s report (2013), Views on End-of-Life Medical Treatment. The fundamental philosophy and principles of palliative care suggest an affirmation of life and regard for dying as a normal process, and our practice intends neither to hasten nor postpone death. As such, our expertise and skill means that our patients and their families often benefit from a firmer focus on, and facilitation of necessarily difficult discussions. Unfortunately, many of the public, patients and their families might lack access to such services and therefore lack the opportunity to hold conversations that can help avoid anguish and regret at the end of life and into bereavement.
Dion Smyth Lecturer-Practitioner in Cancer and Palliative Care, Birmingham City University, UK
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 11
Bellingham, L (2014) There’s Something I’ve Been Dying to Tell You. Coronet. London Park A, Bryson C, Clery E, Curtice J, Phillips M (eds) (2013) British Social Attitudes: the 30th Report. NatCen Social Research. London Pew Research Center (2013) Views on End of Life Medical Treatments. Pew Research Center. Washington. http://tiny.cc/57gwox (accessed 6 November 2014)
523
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 3, 2015. For personal use only. No other uses without permission. . All rights re
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.
Editorial
Talking about death
F
or many of us, the phrase ‘there’s something I’ve been dying to tell you’ is no more than a casual colloquial aside, common enough conversational hyperbole maybe, where we often overstate our enthusiasm for the latest gossip, or the importance of an anecdote we can’t wait to share. For the actress and television presenter Lynda Bellingham, such choice words proved more meaningfully inspired and, perhaps, ultimately inspirational for many, as they form the title of her autobiography, which was written in the months after being diagnosed with advanced colorectal cancer last year. She died last month, unfortunately before she celebrated the Christmas she longed to share with her family; however, the memoir published in October, documents in part her experience of hospitalisation, treatment and living with a terminal illness. In August of this year, she announced openly that she had declined further chemotherapy with ‘relief’, accepting that this could shorten her life but acknowledging that she had ‘taken back control’ which she felt she’d lost during her illness. Her public decision, and the subsequent book detailing her thoughts and attitude, surprised some, and saddened many, but has allowed many more people within the broader society to consider and converse about something that is as inevitable as taxes but more easily avoided: talking about death. Much of the public and political dialogue about death and dying in recent times has focussed rightly on the dispute and deliberations about assisted suicide, since such a topic challenges the very fabric of a society. Arguably for some, it may seem an anomaly in the law that it is acceptable for an individual to refuse treatment–a decision that might ultimately lead to death–but affording people other choices over circumstances of their ultimate demise is not. Nevertheless, Ms Bellingham’s choice provides us all with the necessary opportunity to reflect upon the personal control and command that we can all exert over our lives, and our inetivable deaths, within the context of the law. We don’t have to be dying to consider issues such as writing wills or recording our wishes and intentions for end-of-life care. However, whilst the findings of the recent British Social Attitudes Survey (Park et al, 2013) suggest that the majority of people (70%) felt at ease talking about dying, more than one in ten indicated that they remain uncomfortable with the subject. Equally, the willingness to discuss their preferences does not necessarily translate into pragmatic discussion and actual planning. Only 5% of the sample had a living will or advance care plan, and only one in ten had documented plans for their funeral. Similar figures are also found in America via the Pew Research Centre’s report (2013), Views on End-of-Life Medical Treatment. The fundamental philosophy and principles of palliative care suggest an affirmation of life and regard for dying as a normal process, and our practice intends neither to hasten nor postpone death. As such, our expertise and skill means that our patients and their families often benefit from a firmer focus on, and facilitation of necessarily difficult discussions. Unfortunately, many of the public, patients and their families might lack access to such services and therefore lack the opportunity to hold conversations that can help avoid anguish and regret at the end of life and into bereavement.
Dion Smyth Lecturer-Practitioner in Cancer and Palliative Care, Birmingham City University, UK
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 11
Bellingham, L (2014) There’s Something I’ve Been Dying to Tell You. Coronet. London Park A, Bryson C, Clery E, Curtice J, Phillips M (eds) (2013) British Social Attitudes: the 30th Report. NatCen Social Research. London Pew Research Center (2013) Views on End of Life Medical Treatments. Pew Research Center. Washington. http://tiny.cc/57gwox (accessed 6 November 2014)
523
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 3, 2015. For personal use only. No other uses without permission. . All rights re
