Commentary
Health-promoting palliative care: a Scottish perspective Rebecca M Patterson, Mark A Hazelwood
Rebecca M Patterson, Policy & Communications Manager; Mark A Hazelwood, Chief Executive, Scottish Partnership for Palliative Care, Scotland Correspondence to: Rebecca M Patterson rebecca@ palliativecarescotland. org.uk
318
International Public Health and Palliative Care Conference is scheduled to take place in 2015, and will welcome delegates from many nations. Many of these initiatives have their origins in formal health-care systems, but many do not. For example, the Death Cafe movement (http://deathcafe.com) and the Death Over Dinner project (http://deathoverdinner.org) were initiated because someone perceived a need and took personal action.
Health-promoting palliative care in Scotland: context and policy origins Scotland has an ageing population and growth in chronic multi-morbidity. Changes in the social structure have undermined informal community support. Frameworks of religious belief and ritual associated with death that previously provided support are in decline. Living and Dying Well, the Scottish Government’s (2008) action plan on palliative and end-of-life care, prompted the establishment of a Short Life Working Group, led by the Scottish Partnership for Palliative Care, for ‘the exploration of ideas and issues for addressing palliative and end-of-life care from a publichealth and health-promotion perspective’. This group’s final report (Short Life Working Group 7, 2010) drew on work by Allan Kellehear emphasising the value of partnerships between palliative care and the wider community, and highlighting how a practical health-promoting palliative care approach can enhance the resilience of communities (Kellehear and Young, 2007). The group’s report also recognised that the Jakarta Declaration of the World Health Organization (1997) identified five priorities for health promotion in the 21st century: promoting social responsibility for health, increasing investment for health development, expanding partnerships for health promotion, increasing community capacity and empowering the individual, and securing an infrastructure for health promotion. In 2011 the Scottish Government published
© 2014 MA Healthcare Ltd
C
onventional approaches to improving people’s experiences of death, dying, and bereavement have focused on improving the health- and social-care infrastructure—training staff, providing guidance, and introducing systems and processes to improve care. However, it is becoming more widely recognised that our experiences of death, dying, and bereavement are only partially determined by our interactions with traditional formal services. The culture we live in and the support we receive from our family, friends, workplaces, education system, government bodies, and wider society have a huge impact on how we live, decline, and die. Discussion is a prerequisite for shared decision making, planning, and preparation but is often absent in a culture reluctant to acknowledge death and dying. Low levels of public knowledge and awareness of practical, legal, medical, and emotional aspects of death, dying, and bereavement limit capacity for selfmanagement and provision of informal support. In recent years there has been growing recognition of the importance of promoting culture change and public engagement relating to dying and bereavement (Department of Health, 2008; Scottish Government, 2008). Various terminologies are used to describe relevant approaches—‘public health approaches’, ‘compassionate communities’, and ‘health-promoting palliative care’ are all related concepts—and attempts are now being made to develop conceptual clarity regarding related terminologies (Sallnow and Paul, 2014). Health-promoting approaches to palliative care are growing in popularity worldwide and include Dying Matters in England (www.dyingmatters. org), the Compassionate Communities Project in Ireland (www.compassionatecommunities.ie), the GroundSwell Project in Australia (www.thegroundswellproject.com), the Conversation Project in the USA (http://theconversationproject. org), and Neighbourhood Networks in Kerala, India (Kumar and Numpeli, 2005). The 4th
International Journal of Palliative Nursing 2014, Vol 20, No 7
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 27, 2015. For personal use only. No other uses without permission. . All rights r
Commentary
Living and Dying Well: Building on Progress, which accepted all of the Short Life Working Group’s recommendations relating to healthpromoting palliative care. The concept of health-promoting palliative care is complementary to current Scottish Government health and social care ideologies advocating the benefits of ‘assets-based’ approaches, whereby work is focused on ‘the collective resources which individuals and communities have at their disposal, which protect against negative health outcomes and promote health status’ (Glasgow Centre for Population Health, 2011). Assetsbased approaches are concerned with identifying and building on the protective factors that support health and wellbeing at both individual and community level.
© 2014 MA Healthcare Ltd
Good Life, Good Death, Good Grief Working with minimal resources, how do you translate a well-articulated theoretical framework into a practical national initiative relevant to a particular context and culture? Good Life, Good Death, Good Grief (GLGDGG) was established by the Scottish Partnership for Palliative Care in 2011. GLGDGG is an alliance of individuals and organisations working to make Scotland a place where people can be open about death, dying, and bereavement. Openness is a precondition for identifying and taking the actions needed to improve experiences of death, dying, and bereavement. In Scotland there is a lack of openness at the level of individuals, organisations, and public policies, and each compounds the other. GLGDGG membership includes all NHS Boards in Scotland, many local and national voluntary organisations, universities, schools, faith-based organisations, local authorities, arts organisations, and interested individuals. The work of some members predates the establishment of GLGDGG. Members develop and undertake diverse local activity appropriate to their community. For example: ●●A health-promoting approach has been a key element of recent and ongoing work to redesign palliative care services in NHS Lothian ●●A collaboration between NHS Greater Glasgow and Clyde, St Margaret of Scotland Hospice, the Prince & Princess of Wales Hospice, and Glasgow City Council produced a toolkit to support a ‘whole-school approach to supporting bereavement and loss in educational settings’ (Lindsay et al, 2013) ●●A key element of the Marie Curie Delivering Choice Programme in Argyll and Bute is to promote community involvement around the issues of death, dying, and bereavement
International Journal of Palliative Nursing 2014, Vol 20, No 7
●●Strathcarron Hospice is supporting PhD research looking at how the hospice can make more effective links with schools ●●NHS Borders has a health-promoting palliative care strategy. As is the case internationally, in Scotland a significant amount of work in this area is undertaken on a voluntary basis by people who care deeply about these issues. Indeed, this field has characteristics of both a public-health intervention and a social movement. Many of those involved on a voluntary basis are or were nurses with an interest or specialism in palliative care, who undertake creative and innovative activities in their own time and sometimes at their own expense because they are acutely aware of the importance of this issue. For example, nurses or ex-nurses had a key voluntary role in: ●●The organisation of Dying to Know? A different kind of family day out in Nairn, May 2013 ●●The establishment of the Aberdeen GATE project ●●Running death cafes in Angus and Fife ●●Workshop facilitation and education relating to death, dying, and bereavement. GLGDGG is supported by the existing staff and resources of the Scottish Partnership for Palliative Care, bolstered by piecemeal funding from the Scottish Government. This necessitates a focus on maximum impact for minimal resources, and GLGDGG follows an assets-based approach, aiming to engage, support, and enhance the assets of organisations and individuals with an interest in this area. GLGDGG supports members centrally in several ways that echo the priorities of the Jakarta Declaration, including, through the provision of resources and information, creating opportunities for information-sharing and networking, media engagement, policy development, and hosting volunteers. The presence of a national alliance to encourage and guide activity in this area is helpful in developing and mobilising individual and community assets. For example, to date GLGDGG activity has included: ●●Promoting a national awareness week that prompted significant local activity and media coverage ●●Production of 20 Takes on Death and Dying, a short film exploring ordinary people’s thoughts and views on death, dying, and bereavement, which has been used to provoke thoughts and discussions in a variety of settings ●●Distributing small grants to support members to undertake local activities that support the aims of GLGDGG
❛In recent years there has been growing recognition of the importance of promoting culture change and public engagement relating to dying and bereavement ...❜
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Commentary
●●Designing a ‘dining with death’ conversation menu that has been used in various settings, from training health-care workers to arts festivals (Patterson and Hazelwood, 2014) ●●Connecting interested volunteers in Aberdeen, resulting in the formulation of the Aberdeen GATE project ●●Hosting a highly experienced volunteer, enabling her to offer free workshops to provide staff and volunteers with practical education relating to death, dying, and bereavement.
GLGDGG: broadening involvement The vast majority of GLGDGG members are organisations or individuals working in the health- and social-care sector. However, GLGDGG is based on the premise that death, dying, and bereavement are not solely the domain of health and social care, and a key focus for future work is engaging with other sectors of society. For example, GLGDGG has worked with Just Festival to support the establishment of monthly death cafes in Edinburgh, and this August is working to establish Death on the Fringe as part of the Edinburgh Festival Fringe. There is evidence that many people wish to talk about people who have died (Dying Matters, 2010; Children’s Hospice Association Scotland, 2013; Compassionate Friends UK, 2013). Continuing bonds theory suggests that this can be beneficial (Encyclopedia of Death and Dying, 2014), but it is currently unsupported in Scottish culture. In November 2014, GLGDGG will initiate To Absent Friends (www.toabsentfriends. org.uk), a people’s festival of storytelling and remembrance. The festival will create a highprofile national focal point that captures imaginations across different sectors of society and will provide a socially acceptable and meaningful opportunity to remember and tell stories of people who are now dead.
GLGDGG: impact and influence Cultural and behavioural change is complex and difficult to measure. GLGDGG attempts to assess its impact though process measures (e.g. membership, social-media following, media mentions), measures of behavioural change (e.g. power of attorney applications, will making, advance care planning) (although causality cannot be established), and social attitude surveys (commissioned by others, such as Dying Matters). One important indicator of the impact of GLGDGG is to look at mentions of death, dying, and bereavement in policy documents. In recent years, many significant pieces of policy have been produced with little or no acknowledgment
320
of irreversible decline and death as a significant issue that health- and social-care systems must be equipped to deal with. GLGDGG has had a direct impact on the policy environment, with key messages being incorporated into influential publications including the National Older People’s Outcomes Framework (www.jitscotland.org.uk), Active and Healthy Ageing: An Action Plan for Scotland 2014–2016 (NHS Health Scotland and Joint Improvement Team, 2014), All Hands on Deck (Strang, 2013) and Mind the Gap: Age Scotland’s Public Policy Review 2012–2013 (Age Scotland, 2013). The impact of GLGDGG on policy developments is particularly important given that, without explicit and open engagement at policy level about decline, end of life, and death, improvements in care for people at the end of life are unlikely to be made.
Conclusions It is clear that Scotland needs to become a place where people can be more open about death, dying, and bereavement. These are distressing emotional experiences, and are only made worse if as a society we lack understanding of the process of dying and the complexities of caring for someone approaching the end of their life. Recent media and public concerns relating to the Liverpool Care Pathway for the Dying Patient in the UK cannot have been helped by a cultural reluctance to address these issues openly. In Scotland there is currently significant public interest in a parliamentary bill that proposes the legalisation of assisted suicide, illustrating that many people desire an element of control over how they decline and die. Paradoxically, however, most people have not taken advantage of those elements of control currently available to them through advance care planning (NatCen Social Research, 2013), power of attorney (Office of the Public Guardian, 2014), and advance directives. Health-promoting palliative care therefore has a hugely important role in improving the experiences of the general public. The amount and the diverse nature of health-promoting palliative care activity currently taking place in Scotland indicate that many organisations perceive the importance of this issue and are taking action to address it. There are also a growing number of individuals who care enough about it to take action in a voluntary capacity. The enthusiasm and the interest are there, and much has been achieved by adopting an assets-based approach. However, currently most activities are undertaken from health- and social-care perspectives, and resources are a
© 2014 MA Healthcare Ltd
❛Assets-based approaches are concerned with identifying and building on the protective factors that support health and wellbeing at both individual and community level.❜
International Journal of Palliative Nursing 2014, Vol 20, No 7
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 27, 2015. For personal use only. No other uses without permission. . All rights r
Commentary
limiting factor in addressing this issue more widely. Important work remains to be done, e.g. in the areas of education, disadvantaged communities, and media engagement. As Scotland begins to develop a new strategic framework for palliative and end-of-life care there is an opportunity to ensure this public policy is based on a health-promoting paradigm. As a proposed outcome, ‘culture change’ sounds vague—hard to quantify or plan for. However, in recent years, GLGDGG has ably led and supported engagement on these topics in Scotland. GLGDGG provides a useful example of a practical model that is responsive to local needs and cultures, and has established a strong foundation for scaling up future work in this area. I● JPN Age Scotland (2013) Mind the Gap: Age Scotland’s Public Policy Review 2012-2013. Age Scotland Children’s Hospice Association Scotland (2013) The 100% Project film. www.chas.org.uk/100percentproject/ whatis100 (accessed 5 June 2014) Compassionate Friends UK (2013) Say Their Name film. www.youtube.com/watch?v=GS9z3dwMhZs&feature=kp (accessed 5 June 2014) Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at The End of Life. DH, London Dying Matters (2010) Society’s wall of silence around dying and death prompts call for national debate. http://dyingmatters.org/news/society%E2%80%99s-wall-silencearound-dying-and-death-prompts-call-national-debate (accessed 5 June 2014) Encyclopedia of Death and Dying (2014) Continuing bonds. www.deathreference.com/Ce-Da/Continuing-Bonds.html (accessed 5 June 2014) Glasgow Centre for Population Health (2011) Asset Based
Approaches for Health Improvement: Redressing the Balance. Glasgow Centre for Population Health, Glasgow Kellehear A, Young B (2007) Resilient communities. In: Monroe B, Olivier D, eds. Resilience in Palliative Care – Achievement in Adversity. Oxford University Press, Oxford Kumar S, Numpeli M (2005) Neighborhood network in palliative care. Indian J Palliat Care 11(1): 6–9 Lindsay J, Miller J, Currie EMC, Kelly J, Guthrie M (2013) Whole School Approach to Loss, Grief and Bereavement. www.palliativecarescotland.org.uk/content/publications/ Loss-Grief-and-Bereavement-Toolkit.pdf (accessed 5 June 2014) NatCen Social Research (2013) British Social Attitudes 30. NatCen Social Research NHS Health Scotland and Joint Improvement Team (2014) Active and Healthy Aging Action Plan 2014-16. JIT Office of the Public Guardian (2014) Yearly comparisons by type. www.publicguardian-scotland.gov.uk/whatwedo/ historical%20stats.asp (accessed 5 June 2014) Patterson R, Hazelwood M (2014) Dining with Death: Conversation Menus as a means of educating people about death, dying and bereavement. BMJ Support Palliat Care 4(Suppl 1): A77 Sallnow L, Paul S (2014) Understanding community engagement in end-of-life care: developing conceptual clarity Critical Public Healthdoi: 10.1080/09581596.2014.909582 Scottish Government (2008) Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland. Scottish Government, Edinburgh Scottish Government (2011) Living and Dying Well: Building on Progress. Scottish Government, Edinburgh Short Life Working Group 7 (2010) Addressing Palliative and End of Life Care from A Public Health and Health Promotion Perspective: Facilitating Wider Discussion of Death, Dying and Bereavement Across Society. Scotttish Government, Edinburgh Strang F (2013) All Hands on Deck. www.jitscotland.org. uk/news-and-events-files/All%20Hands%20on%20 Deck.pdf (accessed 5 June 2014) World Health Organization (1997) Jakarta Declaration on Leading Health Promotion into the 21st Century. www. who.int/healthpromotion/conferences/previous/jakarta/ declaration/en/ (accessed 5 June 2014)
Correspondence International Journal of Palliative Nursing welcomes correspondence relating to any of its content, whether only for the Editor’s attention or for publication in the journal.
© 2014 MA Healthcare Ltd
We also encourage letters on any relevant aspects of palliative care from authors who would like to communicate with the readership without necessarily wanting to publish a full-length article. To submit correspondence or discuss the publication potential of a piece, please contact the Editor, Craig Nicholson: [email protected]
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Health-promoting palliative care: a Scottish perspective Rebecca M Patterson, Mark A Hazelwood
Rebecca M Patterson, Policy & Communications Manager; Mark A Hazelwood, Chief Executive, Scottish Partnership for Palliative Care, Scotland Correspondence to: Rebecca M Patterson rebecca@ palliativecarescotland. org.uk
318
International Public Health and Palliative Care Conference is scheduled to take place in 2015, and will welcome delegates from many nations. Many of these initiatives have their origins in formal health-care systems, but many do not. For example, the Death Cafe movement (http://deathcafe.com) and the Death Over Dinner project (http://deathoverdinner.org) were initiated because someone perceived a need and took personal action.
Health-promoting palliative care in Scotland: context and policy origins Scotland has an ageing population and growth in chronic multi-morbidity. Changes in the social structure have undermined informal community support. Frameworks of religious belief and ritual associated with death that previously provided support are in decline. Living and Dying Well, the Scottish Government’s (2008) action plan on palliative and end-of-life care, prompted the establishment of a Short Life Working Group, led by the Scottish Partnership for Palliative Care, for ‘the exploration of ideas and issues for addressing palliative and end-of-life care from a publichealth and health-promotion perspective’. This group’s final report (Short Life Working Group 7, 2010) drew on work by Allan Kellehear emphasising the value of partnerships between palliative care and the wider community, and highlighting how a practical health-promoting palliative care approach can enhance the resilience of communities (Kellehear and Young, 2007). The group’s report also recognised that the Jakarta Declaration of the World Health Organization (1997) identified five priorities for health promotion in the 21st century: promoting social responsibility for health, increasing investment for health development, expanding partnerships for health promotion, increasing community capacity and empowering the individual, and securing an infrastructure for health promotion. In 2011 the Scottish Government published
© 2014 MA Healthcare Ltd
C
onventional approaches to improving people’s experiences of death, dying, and bereavement have focused on improving the health- and social-care infrastructure—training staff, providing guidance, and introducing systems and processes to improve care. However, it is becoming more widely recognised that our experiences of death, dying, and bereavement are only partially determined by our interactions with traditional formal services. The culture we live in and the support we receive from our family, friends, workplaces, education system, government bodies, and wider society have a huge impact on how we live, decline, and die. Discussion is a prerequisite for shared decision making, planning, and preparation but is often absent in a culture reluctant to acknowledge death and dying. Low levels of public knowledge and awareness of practical, legal, medical, and emotional aspects of death, dying, and bereavement limit capacity for selfmanagement and provision of informal support. In recent years there has been growing recognition of the importance of promoting culture change and public engagement relating to dying and bereavement (Department of Health, 2008; Scottish Government, 2008). Various terminologies are used to describe relevant approaches—‘public health approaches’, ‘compassionate communities’, and ‘health-promoting palliative care’ are all related concepts—and attempts are now being made to develop conceptual clarity regarding related terminologies (Sallnow and Paul, 2014). Health-promoting approaches to palliative care are growing in popularity worldwide and include Dying Matters in England (www.dyingmatters. org), the Compassionate Communities Project in Ireland (www.compassionatecommunities.ie), the GroundSwell Project in Australia (www.thegroundswellproject.com), the Conversation Project in the USA (http://theconversationproject. org), and Neighbourhood Networks in Kerala, India (Kumar and Numpeli, 2005). The 4th
International Journal of Palliative Nursing 2014, Vol 20, No 7
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 27, 2015. For personal use only. No other uses without permission. . All rights r
Commentary
Living and Dying Well: Building on Progress, which accepted all of the Short Life Working Group’s recommendations relating to healthpromoting palliative care. The concept of health-promoting palliative care is complementary to current Scottish Government health and social care ideologies advocating the benefits of ‘assets-based’ approaches, whereby work is focused on ‘the collective resources which individuals and communities have at their disposal, which protect against negative health outcomes and promote health status’ (Glasgow Centre for Population Health, 2011). Assetsbased approaches are concerned with identifying and building on the protective factors that support health and wellbeing at both individual and community level.
© 2014 MA Healthcare Ltd
Good Life, Good Death, Good Grief Working with minimal resources, how do you translate a well-articulated theoretical framework into a practical national initiative relevant to a particular context and culture? Good Life, Good Death, Good Grief (GLGDGG) was established by the Scottish Partnership for Palliative Care in 2011. GLGDGG is an alliance of individuals and organisations working to make Scotland a place where people can be open about death, dying, and bereavement. Openness is a precondition for identifying and taking the actions needed to improve experiences of death, dying, and bereavement. In Scotland there is a lack of openness at the level of individuals, organisations, and public policies, and each compounds the other. GLGDGG membership includes all NHS Boards in Scotland, many local and national voluntary organisations, universities, schools, faith-based organisations, local authorities, arts organisations, and interested individuals. The work of some members predates the establishment of GLGDGG. Members develop and undertake diverse local activity appropriate to their community. For example: ●●A health-promoting approach has been a key element of recent and ongoing work to redesign palliative care services in NHS Lothian ●●A collaboration between NHS Greater Glasgow and Clyde, St Margaret of Scotland Hospice, the Prince & Princess of Wales Hospice, and Glasgow City Council produced a toolkit to support a ‘whole-school approach to supporting bereavement and loss in educational settings’ (Lindsay et al, 2013) ●●A key element of the Marie Curie Delivering Choice Programme in Argyll and Bute is to promote community involvement around the issues of death, dying, and bereavement
International Journal of Palliative Nursing 2014, Vol 20, No 7
●●Strathcarron Hospice is supporting PhD research looking at how the hospice can make more effective links with schools ●●NHS Borders has a health-promoting palliative care strategy. As is the case internationally, in Scotland a significant amount of work in this area is undertaken on a voluntary basis by people who care deeply about these issues. Indeed, this field has characteristics of both a public-health intervention and a social movement. Many of those involved on a voluntary basis are or were nurses with an interest or specialism in palliative care, who undertake creative and innovative activities in their own time and sometimes at their own expense because they are acutely aware of the importance of this issue. For example, nurses or ex-nurses had a key voluntary role in: ●●The organisation of Dying to Know? A different kind of family day out in Nairn, May 2013 ●●The establishment of the Aberdeen GATE project ●●Running death cafes in Angus and Fife ●●Workshop facilitation and education relating to death, dying, and bereavement. GLGDGG is supported by the existing staff and resources of the Scottish Partnership for Palliative Care, bolstered by piecemeal funding from the Scottish Government. This necessitates a focus on maximum impact for minimal resources, and GLGDGG follows an assets-based approach, aiming to engage, support, and enhance the assets of organisations and individuals with an interest in this area. GLGDGG supports members centrally in several ways that echo the priorities of the Jakarta Declaration, including, through the provision of resources and information, creating opportunities for information-sharing and networking, media engagement, policy development, and hosting volunteers. The presence of a national alliance to encourage and guide activity in this area is helpful in developing and mobilising individual and community assets. For example, to date GLGDGG activity has included: ●●Promoting a national awareness week that prompted significant local activity and media coverage ●●Production of 20 Takes on Death and Dying, a short film exploring ordinary people’s thoughts and views on death, dying, and bereavement, which has been used to provoke thoughts and discussions in a variety of settings ●●Distributing small grants to support members to undertake local activities that support the aims of GLGDGG
❛In recent years there has been growing recognition of the importance of promoting culture change and public engagement relating to dying and bereavement ...❜
319
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 27, 2015. For personal use only. No other uses without permission. . All rights r
Commentary
●●Designing a ‘dining with death’ conversation menu that has been used in various settings, from training health-care workers to arts festivals (Patterson and Hazelwood, 2014) ●●Connecting interested volunteers in Aberdeen, resulting in the formulation of the Aberdeen GATE project ●●Hosting a highly experienced volunteer, enabling her to offer free workshops to provide staff and volunteers with practical education relating to death, dying, and bereavement.
GLGDGG: broadening involvement The vast majority of GLGDGG members are organisations or individuals working in the health- and social-care sector. However, GLGDGG is based on the premise that death, dying, and bereavement are not solely the domain of health and social care, and a key focus for future work is engaging with other sectors of society. For example, GLGDGG has worked with Just Festival to support the establishment of monthly death cafes in Edinburgh, and this August is working to establish Death on the Fringe as part of the Edinburgh Festival Fringe. There is evidence that many people wish to talk about people who have died (Dying Matters, 2010; Children’s Hospice Association Scotland, 2013; Compassionate Friends UK, 2013). Continuing bonds theory suggests that this can be beneficial (Encyclopedia of Death and Dying, 2014), but it is currently unsupported in Scottish culture. In November 2014, GLGDGG will initiate To Absent Friends (www.toabsentfriends. org.uk), a people’s festival of storytelling and remembrance. The festival will create a highprofile national focal point that captures imaginations across different sectors of society and will provide a socially acceptable and meaningful opportunity to remember and tell stories of people who are now dead.
GLGDGG: impact and influence Cultural and behavioural change is complex and difficult to measure. GLGDGG attempts to assess its impact though process measures (e.g. membership, social-media following, media mentions), measures of behavioural change (e.g. power of attorney applications, will making, advance care planning) (although causality cannot be established), and social attitude surveys (commissioned by others, such as Dying Matters). One important indicator of the impact of GLGDGG is to look at mentions of death, dying, and bereavement in policy documents. In recent years, many significant pieces of policy have been produced with little or no acknowledgment
320
of irreversible decline and death as a significant issue that health- and social-care systems must be equipped to deal with. GLGDGG has had a direct impact on the policy environment, with key messages being incorporated into influential publications including the National Older People’s Outcomes Framework (www.jitscotland.org.uk), Active and Healthy Ageing: An Action Plan for Scotland 2014–2016 (NHS Health Scotland and Joint Improvement Team, 2014), All Hands on Deck (Strang, 2013) and Mind the Gap: Age Scotland’s Public Policy Review 2012–2013 (Age Scotland, 2013). The impact of GLGDGG on policy developments is particularly important given that, without explicit and open engagement at policy level about decline, end of life, and death, improvements in care for people at the end of life are unlikely to be made.
Conclusions It is clear that Scotland needs to become a place where people can be more open about death, dying, and bereavement. These are distressing emotional experiences, and are only made worse if as a society we lack understanding of the process of dying and the complexities of caring for someone approaching the end of their life. Recent media and public concerns relating to the Liverpool Care Pathway for the Dying Patient in the UK cannot have been helped by a cultural reluctance to address these issues openly. In Scotland there is currently significant public interest in a parliamentary bill that proposes the legalisation of assisted suicide, illustrating that many people desire an element of control over how they decline and die. Paradoxically, however, most people have not taken advantage of those elements of control currently available to them through advance care planning (NatCen Social Research, 2013), power of attorney (Office of the Public Guardian, 2014), and advance directives. Health-promoting palliative care therefore has a hugely important role in improving the experiences of the general public. The amount and the diverse nature of health-promoting palliative care activity currently taking place in Scotland indicate that many organisations perceive the importance of this issue and are taking action to address it. There are also a growing number of individuals who care enough about it to take action in a voluntary capacity. The enthusiasm and the interest are there, and much has been achieved by adopting an assets-based approach. However, currently most activities are undertaken from health- and social-care perspectives, and resources are a
© 2014 MA Healthcare Ltd
❛Assets-based approaches are concerned with identifying and building on the protective factors that support health and wellbeing at both individual and community level.❜
International Journal of Palliative Nursing 2014, Vol 20, No 7
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 27, 2015. For personal use only. No other uses without permission. . All rights r
Commentary
limiting factor in addressing this issue more widely. Important work remains to be done, e.g. in the areas of education, disadvantaged communities, and media engagement. As Scotland begins to develop a new strategic framework for palliative and end-of-life care there is an opportunity to ensure this public policy is based on a health-promoting paradigm. As a proposed outcome, ‘culture change’ sounds vague—hard to quantify or plan for. However, in recent years, GLGDGG has ably led and supported engagement on these topics in Scotland. GLGDGG provides a useful example of a practical model that is responsive to local needs and cultures, and has established a strong foundation for scaling up future work in this area. I● JPN Age Scotland (2013) Mind the Gap: Age Scotland’s Public Policy Review 2012-2013. Age Scotland Children’s Hospice Association Scotland (2013) The 100% Project film. www.chas.org.uk/100percentproject/ whatis100 (accessed 5 June 2014) Compassionate Friends UK (2013) Say Their Name film. www.youtube.com/watch?v=GS9z3dwMhZs&feature=kp (accessed 5 June 2014) Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at The End of Life. DH, London Dying Matters (2010) Society’s wall of silence around dying and death prompts call for national debate. http://dyingmatters.org/news/society%E2%80%99s-wall-silencearound-dying-and-death-prompts-call-national-debate (accessed 5 June 2014) Encyclopedia of Death and Dying (2014) Continuing bonds. www.deathreference.com/Ce-Da/Continuing-Bonds.html (accessed 5 June 2014) Glasgow Centre for Population Health (2011) Asset Based
Approaches for Health Improvement: Redressing the Balance. Glasgow Centre for Population Health, Glasgow Kellehear A, Young B (2007) Resilient communities. In: Monroe B, Olivier D, eds. Resilience in Palliative Care – Achievement in Adversity. Oxford University Press, Oxford Kumar S, Numpeli M (2005) Neighborhood network in palliative care. Indian J Palliat Care 11(1): 6–9 Lindsay J, Miller J, Currie EMC, Kelly J, Guthrie M (2013) Whole School Approach to Loss, Grief and Bereavement. www.palliativecarescotland.org.uk/content/publications/ Loss-Grief-and-Bereavement-Toolkit.pdf (accessed 5 June 2014) NatCen Social Research (2013) British Social Attitudes 30. NatCen Social Research NHS Health Scotland and Joint Improvement Team (2014) Active and Healthy Aging Action Plan 2014-16. JIT Office of the Public Guardian (2014) Yearly comparisons by type. www.publicguardian-scotland.gov.uk/whatwedo/ historical%20stats.asp (accessed 5 June 2014) Patterson R, Hazelwood M (2014) Dining with Death: Conversation Menus as a means of educating people about death, dying and bereavement. BMJ Support Palliat Care 4(Suppl 1): A77 Sallnow L, Paul S (2014) Understanding community engagement in end-of-life care: developing conceptual clarity Critical Public Healthdoi: 10.1080/09581596.2014.909582 Scottish Government (2008) Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland. Scottish Government, Edinburgh Scottish Government (2011) Living and Dying Well: Building on Progress. Scottish Government, Edinburgh Short Life Working Group 7 (2010) Addressing Palliative and End of Life Care from A Public Health and Health Promotion Perspective: Facilitating Wider Discussion of Death, Dying and Bereavement Across Society. Scotttish Government, Edinburgh Strang F (2013) All Hands on Deck. www.jitscotland.org. uk/news-and-events-files/All%20Hands%20on%20 Deck.pdf (accessed 5 June 2014) World Health Organization (1997) Jakarta Declaration on Leading Health Promotion into the 21st Century. www. who.int/healthpromotion/conferences/previous/jakarta/ declaration/en/ (accessed 5 June 2014)
Correspondence International Journal of Palliative Nursing welcomes correspondence relating to any of its content, whether only for the Editor’s attention or for publication in the journal.
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We also encourage letters on any relevant aspects of palliative care from authors who would like to communicate with the readership without necessarily wanting to publish a full-length article. To submit correspondence or discuss the publication potential of a piece, please contact the Editor, Craig Nicholson: [email protected]
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