Commentary
One size does not fit all for a good death
R
Sarah Russell, Professional Doctorate Student, Centre for Research in Primary and Community Care, University of Hertfordshire, UK Correspondence to: sarahjfrussell@yahoo. co.uk, @learnhospice
306
ecently, the concept of a good death has been the centre of high profile campaigns all over the globe, such as Dying Matters and Dementia Awareness weeks in the UK, palliative care week in Australia, the European Association of Palliative Care Congress (Denmark), Public Health Palliative Care Conference (UK) and Advanced Learning in Palliative Medicine meeting (Canada). Despite the challenges of defining or measuring what a good death is (Schwartz et al, 2003), achieving this is a goal of palliative care (Clark, 2002). While there are reports that clinicians, patients and their families may have different perspectives on what a ‘good death’ is (Payne et al, 1996), there is plenty of robust evidence that elements of it contain pain and symptom management, clear decision making, preparation for death, completion, contributing to others and affirmation of the whole person (Steinhauser et al, 2000). In addition, we must recognise that diversity, in terms of culture, background, preferences, disease type and trajectory, influences end-of-life care (Russell, 2015). There is also an interesting debate about what we are really defining, measuring or talking about, e.g. good, peaceful or gentle death, dying or quality of dying, death or end-of-life care and the duration of the dying phase (Hales et al, 2010). Tools such as the Quality of Dying and Death tool seek to address these aspects while acknowledging that components of the quality of end-of-life care and dying may be difficult or even impossible to measure (Randall Curtis et al, 2013). A common thread to the good death thesis is the battle to overcome the denial of death (Zimmermann and Rodin, 2004) through the assumption or expectation that open conversations about dying means facilitating a good death. Awareness of dying and open, honest communication might enable the discussion and documentation of end-of-life preferences, but is this a good death for everybody? I think that we need to talk more about this, not only because of the debate about different cultural constructs of truth telling, autonomy and self-determination (Russell, 2015),
but also about the challenges of diminishing other ways to construct a good death—those that do not necessarily lie within a framework of open awareness of dying. Borgstrom and Walter (2015) argue that the 2008 NHS End of Life Strategy (Department of Health, 2008) and associated Dying Matters campaign offers a particular discourse promoting end-of-life conversations which warn of ‘the perils of not talking and not making informed choices about how one wishes to die’ (Borgstrom and Walter, 2015: 100); a momentum reflected in other public awareness campaigns such as Respecting Choices (US), Ground Swell (Australia), Speak Up (Canada) and Silver Pages in Singapore (Russell, 2014). While acknowledging and supporting this perspective, the further question one might ask is: have we relegated other ways to communicate and construct a good death? There is a danger that one might reduce a good death into products solely concerned with measurable clinical activity and communication rituals, with choices minimised into a check list (Borgstrom and Walter, 2015). Toscani et al (2003) argued that there are a number of good death models, and Walters (2004) suggests that a good death should be broadened to accept the struggle with which many people face their death. Zimmermann and Rodin (2004) point out that the focus of palliative care should be on relief of suffering, not on the extinguishing of the denial of death. Semino et al’s (2014) study of hospice managers concluded that alternative perspectives on dying may be being precluded. Furthermore, there are arguments that the clinical focus on achieving death acceptance has encouraged participation only in a certain way to die (Zimmermann, 2012) as a means to control the process of dying (Zimmermann 2007). Zimmermann (2007) also suggests that the persistent denial of death is labelled as a maladaptive psychological coping mechanism and an obstacle to the perceived correct way to die by impeding for example open discussion of dying and advance care planning. Hopkinson and Hallett (2002) challenge assumptions, suggesting that the beliefs and val-
© 2015 MA Healthcare Ltd
Sarah Russell
International Journal of Palliative Nursing 2015, Vol 21, No 6
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
Commentary
ues of each individual influences what they understand to be an acceptable death. Moreover, if autonomy and choice are pivotal to end-of-life care, where does this stand in terms of advance care planning discussions? The English end-of-life strategy imagines and manages advance care planning choices only around where, with whom and what treatments are not wanted (Borgstrom and Walter 2015). Perhaps this is not the way in which everyone would like to plan or live the last part of their life. The assisted dying movement may be seen as competing with the palliative care movement on the topic of how a good death through choice and control at the end of life are defined and experienced. As part of the discussion, both as clinicians and members of our communities, we need to throw a spotlight on the variety of good death models. Covey (2004) challenges us to ‘seek first to understand, then to be understood’. Seeking to understand the diversity within the constructs of a good death deserves our attention and discussion so that we can take in different perspectives on the experience. Not only does one size not fit all for end-of-life care (Barclay et al, 2011), one size does not fit all for a good death. Barclay S, Momen N, Case-Upton S et al (2011) End of life care conversations with heart failure patients: a systematic literature review and narrative synthesis. Br J Gen Pract 61(582): e49–62 Borgstrom E, Walter T (2015) Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Soc
Sci Med 136-137C:99–105 Clark D (2002) Between hope and acceptance: the medicalisaion of dying. BMJ 324(7342): 905–7 Covey SR (2004) The 7 Habits of Highly Effective People. Simon & Schuster Ltd, London Department of Health (2008) End Of Life Care Strategy: Promoting High Quality Care For All Adults At The End Of Life. http://tinyurl.com/kuznznz (accessed 4 June 2015) Hales S, Zimmermann C, Rodin G (2008) The quality of dying and death. Arch Intern Med 168(9): 912–8 Hopkinson J, Hallett C (2002) Good death? An exploration of newly qualified nurses’ understanding of good death. Int J Palliat Nurs 8(11): 532–9 Payne SA, Langley Evans A, Hiller R (1996) Perceptions of a ‘good’ death: a comparative study of the views of hospice staff and patients. Palliat Med 10(4): 307–12 Randall Curtis J, Downey L, Engelberg RA (2013) The quality of dying and death is it ready for use as an outcome measure? Chest 143(2): 289–91 Russell S (2014) Advance care planning: whose agenda is it anyway? Palliat Med 28(8): 997–9 Russell S (2015) Why diversity matters in advance care planning Int J Palliat Nurs 21(5): 234–5 Schwartz CE, Mazor K, Rogers J et al (2003) Validation of a new measure of concept of a good death. J Palliat Med 6(4): 575–84 Semino E, Demjen Z, Koller V (2014) ‘Good’ and ‘bad’ deaths: narratives and professional identities in interviews with hospice managers. Discourse Studies 16(5): 667–85 Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132(10): 825–32 Toscani F, Borreani C, Boeri P, Miccinesi G (2003) Life at the end of life: beliefs about individual life after death and “good death” models - a qualitative study. Health Qual Life Outcomes 1: 65 Walters G (2004) Is there such a thing as a good death? Palliat Med 18(5): 404–8 Zimmermann C (2007) Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn 29(2): 297–314, Zimmermann C, Rodin G (2004) The denial of death thesis: sociological critique and implications for palliative care. Palliat Med 18(2): 121–8 Zimmermann C (2012) Acceptance of dying: a discourse analysis of palliative care literature. Soc Sci Med 75(1): 217–24
Fundamental Aspects of Palliative Care Nursing 2nd edition
❛Seeking to understand the diversity within the constructs of a good death deserves our attention and discussion...❜
About the book
This title presents a sensitive and supportive approach to the key themes of palliative care nursing.
• Reflective activities and points for professional development
• Links to appropriate clauses of the NMC Code of It contains important material on a wide Professional Conduct range of initiatives that are impacting on end of life care across the UK. Each The book will Self assessment tests at also prove useful to newly qualifie • d nurses, those returning to practice in many care settings. of and health care chapter examines a assistan keytscomponent the end of each chapter to care and includes: About the author consolidate learning. Robert Becker MSc Dip N (Lond) RMN RGN Cert Ed (FE) FETC 730 holds a Senior Lecture Care joint teaching
appointment between Severn r in Palliative Hospice in Shropshire and Stafford of Health • Learning outcomes tobased guide shire University Faculty in Shrewsbury. Over the last 15 years ISBN-13: he has develop 978-1-85642-394-6;
the reader
ed a teaching and advisory role number of European countries in a and regularly leads palliative care study tours for health profess He is Chairperson of the Nation ionals in China. al Association for Palliative Care Educators and is an active membe editorial board of the International r of the Journal of Palliative Nursing. He is also a recipient of the ‘Educat the Year Award’ at the Interna ionalist of tional Journal of Palliative Nursing Awards for 2008.
234 x 156mm; paperback; 360 pages; publication 2010; Other titles in the Fundamen £26.99 the reality of practice tal AspeRRP: cts of Nurs
• Clinical anecdotes to illustrate
ing series:
Mental Health Nursing
nity Nursing Nursing Adults ‘This book is a thoughtful andes thought provoking text and with Respira Complementary Therapi tory will Disordersbe a useful Nursing the Acutely Ill Adult Finding Information addition to the library ofConditio anyone teaching or Pain taking care courses Assessment palliative Long-Term & Management ns Series Editor: John Fowler or placements in end-of-life care settings’. Research for Nurses Dion Smyth, The International Journal of Palliative Nursing ISBN 1-85642-394-8
Order your copies by visiting
or call our Hotline
www.quaybooks.co.uk +44(0)1722 716 935 www.quaybooks.co.uk 9
781856 423946
Fundamental Aspects of
Palliative Care Nursing
An evidence-based handbook for student nurs es
2nd edition Robert Becker
Robert Becker
© 2015 MA Healthcare Ltd
Children & Young Peoples Nursing Procedures Commu
Fundamental Aspects of Palliative Care 2nd edition
Robert Becker
All nurses are intimately involve d in caring for the dying and bereave d at some point in their career student nurses it is widely recogni and for sed as one of the most challeng ing aspects of their role. This book towards their particular needs is centred and the difficulties that student nurses face when confronted how to use the palliative approa with the reality of ch in the multiple environments in which they are expected to skills. This second edition maintai develop their ns a sensitive and supportive approa ch to the key themes of palliativ nursing, but contains important e care new material of a wide range of initiatives that are impacting care across the UK. It will provide on end of life the reader with a concise, easy to read and learning oriented give advice and direction to the text that will many challenges faced in this most important area of patient care. Each chapter examines a key component of care and is structu red to include: • Learning outcomes to guide the reader • Clinical anecdotes to illustrat e the reality of practice • Reflective activities and points for professional development • Links to appropriate clauses of the current 2008 NMC Code of Professional Conduct • Internet resources • Self assessment tests at the end of each chapter to consoli date learning • A palliative care quiz to test your knowledge
Fundamental Aspects of Nurs
ing series
FA PalliCare2nd cover.ind
d 1
International Journal of Palliative Nursing 2015, Vol 21, No 6
307
21/1/10 13:37:14
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
One size does not fit all for a good death
R
Sarah Russell, Professional Doctorate Student, Centre for Research in Primary and Community Care, University of Hertfordshire, UK Correspondence to: sarahjfrussell@yahoo. co.uk, @learnhospice
306
ecently, the concept of a good death has been the centre of high profile campaigns all over the globe, such as Dying Matters and Dementia Awareness weeks in the UK, palliative care week in Australia, the European Association of Palliative Care Congress (Denmark), Public Health Palliative Care Conference (UK) and Advanced Learning in Palliative Medicine meeting (Canada). Despite the challenges of defining or measuring what a good death is (Schwartz et al, 2003), achieving this is a goal of palliative care (Clark, 2002). While there are reports that clinicians, patients and their families may have different perspectives on what a ‘good death’ is (Payne et al, 1996), there is plenty of robust evidence that elements of it contain pain and symptom management, clear decision making, preparation for death, completion, contributing to others and affirmation of the whole person (Steinhauser et al, 2000). In addition, we must recognise that diversity, in terms of culture, background, preferences, disease type and trajectory, influences end-of-life care (Russell, 2015). There is also an interesting debate about what we are really defining, measuring or talking about, e.g. good, peaceful or gentle death, dying or quality of dying, death or end-of-life care and the duration of the dying phase (Hales et al, 2010). Tools such as the Quality of Dying and Death tool seek to address these aspects while acknowledging that components of the quality of end-of-life care and dying may be difficult or even impossible to measure (Randall Curtis et al, 2013). A common thread to the good death thesis is the battle to overcome the denial of death (Zimmermann and Rodin, 2004) through the assumption or expectation that open conversations about dying means facilitating a good death. Awareness of dying and open, honest communication might enable the discussion and documentation of end-of-life preferences, but is this a good death for everybody? I think that we need to talk more about this, not only because of the debate about different cultural constructs of truth telling, autonomy and self-determination (Russell, 2015),
but also about the challenges of diminishing other ways to construct a good death—those that do not necessarily lie within a framework of open awareness of dying. Borgstrom and Walter (2015) argue that the 2008 NHS End of Life Strategy (Department of Health, 2008) and associated Dying Matters campaign offers a particular discourse promoting end-of-life conversations which warn of ‘the perils of not talking and not making informed choices about how one wishes to die’ (Borgstrom and Walter, 2015: 100); a momentum reflected in other public awareness campaigns such as Respecting Choices (US), Ground Swell (Australia), Speak Up (Canada) and Silver Pages in Singapore (Russell, 2014). While acknowledging and supporting this perspective, the further question one might ask is: have we relegated other ways to communicate and construct a good death? There is a danger that one might reduce a good death into products solely concerned with measurable clinical activity and communication rituals, with choices minimised into a check list (Borgstrom and Walter, 2015). Toscani et al (2003) argued that there are a number of good death models, and Walters (2004) suggests that a good death should be broadened to accept the struggle with which many people face their death. Zimmermann and Rodin (2004) point out that the focus of palliative care should be on relief of suffering, not on the extinguishing of the denial of death. Semino et al’s (2014) study of hospice managers concluded that alternative perspectives on dying may be being precluded. Furthermore, there are arguments that the clinical focus on achieving death acceptance has encouraged participation only in a certain way to die (Zimmermann, 2012) as a means to control the process of dying (Zimmermann 2007). Zimmermann (2007) also suggests that the persistent denial of death is labelled as a maladaptive psychological coping mechanism and an obstacle to the perceived correct way to die by impeding for example open discussion of dying and advance care planning. Hopkinson and Hallett (2002) challenge assumptions, suggesting that the beliefs and val-
© 2015 MA Healthcare Ltd
Sarah Russell
International Journal of Palliative Nursing 2015, Vol 21, No 6
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
Commentary
ues of each individual influences what they understand to be an acceptable death. Moreover, if autonomy and choice are pivotal to end-of-life care, where does this stand in terms of advance care planning discussions? The English end-of-life strategy imagines and manages advance care planning choices only around where, with whom and what treatments are not wanted (Borgstrom and Walter 2015). Perhaps this is not the way in which everyone would like to plan or live the last part of their life. The assisted dying movement may be seen as competing with the palliative care movement on the topic of how a good death through choice and control at the end of life are defined and experienced. As part of the discussion, both as clinicians and members of our communities, we need to throw a spotlight on the variety of good death models. Covey (2004) challenges us to ‘seek first to understand, then to be understood’. Seeking to understand the diversity within the constructs of a good death deserves our attention and discussion so that we can take in different perspectives on the experience. Not only does one size not fit all for end-of-life care (Barclay et al, 2011), one size does not fit all for a good death. Barclay S, Momen N, Case-Upton S et al (2011) End of life care conversations with heart failure patients: a systematic literature review and narrative synthesis. Br J Gen Pract 61(582): e49–62 Borgstrom E, Walter T (2015) Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Soc
Sci Med 136-137C:99–105 Clark D (2002) Between hope and acceptance: the medicalisaion of dying. BMJ 324(7342): 905–7 Covey SR (2004) The 7 Habits of Highly Effective People. Simon & Schuster Ltd, London Department of Health (2008) End Of Life Care Strategy: Promoting High Quality Care For All Adults At The End Of Life. http://tinyurl.com/kuznznz (accessed 4 June 2015) Hales S, Zimmermann C, Rodin G (2008) The quality of dying and death. Arch Intern Med 168(9): 912–8 Hopkinson J, Hallett C (2002) Good death? An exploration of newly qualified nurses’ understanding of good death. Int J Palliat Nurs 8(11): 532–9 Payne SA, Langley Evans A, Hiller R (1996) Perceptions of a ‘good’ death: a comparative study of the views of hospice staff and patients. Palliat Med 10(4): 307–12 Randall Curtis J, Downey L, Engelberg RA (2013) The quality of dying and death is it ready for use as an outcome measure? Chest 143(2): 289–91 Russell S (2014) Advance care planning: whose agenda is it anyway? Palliat Med 28(8): 997–9 Russell S (2015) Why diversity matters in advance care planning Int J Palliat Nurs 21(5): 234–5 Schwartz CE, Mazor K, Rogers J et al (2003) Validation of a new measure of concept of a good death. J Palliat Med 6(4): 575–84 Semino E, Demjen Z, Koller V (2014) ‘Good’ and ‘bad’ deaths: narratives and professional identities in interviews with hospice managers. Discourse Studies 16(5): 667–85 Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132(10): 825–32 Toscani F, Borreani C, Boeri P, Miccinesi G (2003) Life at the end of life: beliefs about individual life after death and “good death” models - a qualitative study. Health Qual Life Outcomes 1: 65 Walters G (2004) Is there such a thing as a good death? Palliat Med 18(5): 404–8 Zimmermann C (2007) Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn 29(2): 297–314, Zimmermann C, Rodin G (2004) The denial of death thesis: sociological critique and implications for palliative care. Palliat Med 18(2): 121–8 Zimmermann C (2012) Acceptance of dying: a discourse analysis of palliative care literature. Soc Sci Med 75(1): 217–24
Fundamental Aspects of Palliative Care Nursing 2nd edition
❛Seeking to understand the diversity within the constructs of a good death deserves our attention and discussion...❜
About the book
This title presents a sensitive and supportive approach to the key themes of palliative care nursing.
• Reflective activities and points for professional development
• Links to appropriate clauses of the NMC Code of It contains important material on a wide Professional Conduct range of initiatives that are impacting on end of life care across the UK. Each The book will Self assessment tests at also prove useful to newly qualifie • d nurses, those returning to practice in many care settings. of and health care chapter examines a assistan keytscomponent the end of each chapter to care and includes: About the author consolidate learning. Robert Becker MSc Dip N (Lond) RMN RGN Cert Ed (FE) FETC 730 holds a Senior Lecture Care joint teaching
appointment between Severn r in Palliative Hospice in Shropshire and Stafford of Health • Learning outcomes tobased guide shire University Faculty in Shrewsbury. Over the last 15 years ISBN-13: he has develop 978-1-85642-394-6;
the reader
ed a teaching and advisory role number of European countries in a and regularly leads palliative care study tours for health profess He is Chairperson of the Nation ionals in China. al Association for Palliative Care Educators and is an active membe editorial board of the International r of the Journal of Palliative Nursing. He is also a recipient of the ‘Educat the Year Award’ at the Interna ionalist of tional Journal of Palliative Nursing Awards for 2008.
234 x 156mm; paperback; 360 pages; publication 2010; Other titles in the Fundamen £26.99 the reality of practice tal AspeRRP: cts of Nurs
• Clinical anecdotes to illustrate
ing series:
Mental Health Nursing
nity Nursing Nursing Adults ‘This book is a thoughtful andes thought provoking text and with Respira Complementary Therapi tory will Disordersbe a useful Nursing the Acutely Ill Adult Finding Information addition to the library ofConditio anyone teaching or Pain taking care courses Assessment palliative Long-Term & Management ns Series Editor: John Fowler or placements in end-of-life care settings’. Research for Nurses Dion Smyth, The International Journal of Palliative Nursing ISBN 1-85642-394-8
Order your copies by visiting
or call our Hotline
www.quaybooks.co.uk +44(0)1722 716 935 www.quaybooks.co.uk 9
781856 423946
Fundamental Aspects of
Palliative Care Nursing
An evidence-based handbook for student nurs es
2nd edition Robert Becker
Robert Becker
© 2015 MA Healthcare Ltd
Children & Young Peoples Nursing Procedures Commu
Fundamental Aspects of Palliative Care 2nd edition
Robert Becker
All nurses are intimately involve d in caring for the dying and bereave d at some point in their career student nurses it is widely recogni and for sed as one of the most challeng ing aspects of their role. This book towards their particular needs is centred and the difficulties that student nurses face when confronted how to use the palliative approa with the reality of ch in the multiple environments in which they are expected to skills. This second edition maintai develop their ns a sensitive and supportive approa ch to the key themes of palliativ nursing, but contains important e care new material of a wide range of initiatives that are impacting care across the UK. It will provide on end of life the reader with a concise, easy to read and learning oriented give advice and direction to the text that will many challenges faced in this most important area of patient care. Each chapter examines a key component of care and is structu red to include: • Learning outcomes to guide the reader • Clinical anecdotes to illustrat e the reality of practice • Reflective activities and points for professional development • Links to appropriate clauses of the current 2008 NMC Code of Professional Conduct • Internet resources • Self assessment tests at the end of each chapter to consoli date learning • A palliative care quiz to test your knowledge
Fundamental Aspects of Nurs
ing series
FA PalliCare2nd cover.ind
d 1
International Journal of Palliative Nursing 2015, Vol 21, No 6
307
21/1/10 13:37:14
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
