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 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
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
Jane Phillips Professor Palliative Nursing, The Cunningham Centre for Palliative Care Sydney, Sacred Heart Hospice, and The University of Notre Dame Australia
Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University
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 UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
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
© © 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 5
Editorial
Euthanasia for children and young people?
I
n February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering ‘constant and unbearable pain’, and whose parents and health professionals agree with the decision. The child also has to be interviewed by a psychologist or psychiatrist to ascertain and certify their ‘capacity of discernment’. The decision to request euthanasia must first be put in writing by the parents and the family must be offered psychological support. A commission oversees the practice of euthanasia in Belgium to ensure compliance with the governance procedures. This development made the international news in the spring of this year, with many in the UK questioning whether there would be a need for such a law if palliative care were available and well developed enough to meet the needs of children, young people, and families facing life-limiting conditions. This is the core philosophy behind the hospice movement and the paediatric palliative care teams that have become a feature of many health-care settings over the past 30 years. Aside from the many ethical arguments about the primacy of preserving the sanctity of human life, there are several fundamental questions for palliative care professionals to consider about the way that practices involving euthanasia develop across different cultures—even in countries in relatively close proximity on the European continent. An interesting survey of neonatal unit staff across Europe in 2004 revealed that active euthanasia was considered acceptable and was being practised in The Netherlands, France and, to a lesser extent, Lithuania. However, it was viewed as less acceptable in Sweden, Hungary, Italy, and Spain (Cuttini et al, 2004). This range of opinion reflects cultural differences as well as religious and moral attitudes toward euthanasia in the most vulnerable. I was recently asked my own opinion on euthanasia, or assisted dying, in the context of working with a hospice to provide some expert advice (not in a paediatric setting). This made me reflect on whether this was a reasonable question. Personal morality shapes our responses to fundamental questions about end-of-life care, and we each draw on our own personal ethical codes to guide us. Sometimes these stem from a religion or a faith, and sometimes they do not. They are, however, strongly felt and very personal. The question of providing euthanasia for children and young people provides a powerful prompt to re-examine our moral beliefs and debate them from a position of knowledge and empathy. These debates about children and young people usually focus on the issue of their competence to make such decisions and the need for adults to protect them (Wolf, 1998). For some young people who have been living with a serious life-limiting condition for many years this stance may feel patronising. However, without adequate research evidence that end-of-life care for young people is as good as it can be, we leave ourselves open to arguing only on a moral level. With robust research evidence we could argue for the excellence of palliative care in young people from both an empirical and a moral stance; however, in my own field of interest—teenage JPN and young adult cancer care—such research evidence remains scarce. Il
Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University Cuttini M, Casotto V, Kaminski M et al (2004) Should euthanasia be legal? An international survey of neonatal intensive care units staff. Arch Dis Child Fetal Neonatal Ed 89(1): 19–24 Wolf S (1998) Facing assisted suicide and euthanasia in children and adolescents. In: Emanuel L (ed) Regulating How We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-Assisted Suicide. Harvard University Press: 92–119
211
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Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/Palliative Care, Kids Cancer Centre, Sydney Children’s Hospital
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
Jane Phillips Professor Palliative Nursing, The Cunningham Centre for Palliative Care Sydney, Sacred Heart Hospice, and The University of Notre Dame Australia
Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University
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 UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
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
© © 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 5
Editorial
Euthanasia for children and young people?
I
n February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering ‘constant and unbearable pain’, and whose parents and health professionals agree with the decision. The child also has to be interviewed by a psychologist or psychiatrist to ascertain and certify their ‘capacity of discernment’. The decision to request euthanasia must first be put in writing by the parents and the family must be offered psychological support. A commission oversees the practice of euthanasia in Belgium to ensure compliance with the governance procedures. This development made the international news in the spring of this year, with many in the UK questioning whether there would be a need for such a law if palliative care were available and well developed enough to meet the needs of children, young people, and families facing life-limiting conditions. This is the core philosophy behind the hospice movement and the paediatric palliative care teams that have become a feature of many health-care settings over the past 30 years. Aside from the many ethical arguments about the primacy of preserving the sanctity of human life, there are several fundamental questions for palliative care professionals to consider about the way that practices involving euthanasia develop across different cultures—even in countries in relatively close proximity on the European continent. An interesting survey of neonatal unit staff across Europe in 2004 revealed that active euthanasia was considered acceptable and was being practised in The Netherlands, France and, to a lesser extent, Lithuania. However, it was viewed as less acceptable in Sweden, Hungary, Italy, and Spain (Cuttini et al, 2004). This range of opinion reflects cultural differences as well as religious and moral attitudes toward euthanasia in the most vulnerable. I was recently asked my own opinion on euthanasia, or assisted dying, in the context of working with a hospice to provide some expert advice (not in a paediatric setting). This made me reflect on whether this was a reasonable question. Personal morality shapes our responses to fundamental questions about end-of-life care, and we each draw on our own personal ethical codes to guide us. Sometimes these stem from a religion or a faith, and sometimes they do not. They are, however, strongly felt and very personal. The question of providing euthanasia for children and young people provides a powerful prompt to re-examine our moral beliefs and debate them from a position of knowledge and empathy. These debates about children and young people usually focus on the issue of their competence to make such decisions and the need for adults to protect them (Wolf, 1998). For some young people who have been living with a serious life-limiting condition for many years this stance may feel patronising. However, without adequate research evidence that end-of-life care for young people is as good as it can be, we leave ourselves open to arguing only on a moral level. With robust research evidence we could argue for the excellence of palliative care in young people from both an empirical and a moral stance; however, in my own field of interest—teenage JPN and young adult cancer care—such research evidence remains scarce. Il
Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University Cuttini M, Casotto V, Kaminski M et al (2004) Should euthanasia be legal? An international survey of neonatal intensive care units staff. Arch Dis Child Fetal Neonatal Ed 89(1): 19–24 Wolf S (1998) Facing assisted suicide and euthanasia in children and adolescents. In: Emanuel L (ed) Regulating How We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-Assisted Suicide. Harvard University Press: 92–119
211
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 21, 2015. For personal use only. No other uses without permission. . All rights r
