I believe that the Strategic Framework for Action on Palliative and End of Life Care has captured the core issues that face us in improving care in Scotland for people with life limiting illness and those close to them. The Scottish Government’s document avoids the pitfalls of ‘top-down’ and ‘checklist’ directives, but provides a clear vision and strategic focus to move forward. For me, it is a strong statement not just about the ‘mainstreaming’ of palliative care into the very lungs of the health and social care system, but also into the heart of what it means to be a compassionate society in the face of human mortality and care at the end of life.
2015 has been a remarkable year for those concerned about end of life issues in Scotland.
Following an extensive consultation and evidence gathering process, on 27 May the Scottish Parliament rejected by 82 votes to 36 a bill designed to legalise assisted suicide. Two months later the Parliament’s Health and Sport Committee announced an inquiry into palliative care in Scotland and produced its report We Need to Talk About Palliative Care on 25 November 2015. The report called for greater consistency in how palliative care can be made available to those who need it and greater clarity in how its benefits are defined and described.
In spring this year I was asked to act as the Consulting Editor on the Strategic Framework for Action on Palliative and End of Life Care, and over the following months I worked closely with Professor Craig White, Chair of the National Advisory Group for Palliative and End of Life Care, Scottish Government along with his colleagues in the Health Quality & Strategy Directorate. Many people have contributed to the formation of the Framework and the supporting evidence summary. It has been an honour to serve alongside them and to reflect on the submissions and suggestions made along the way in what has sometimes been a lively process!
Now, on 18 December 2015, the Framework has been published, capping a remarkable year of discussion. It sets the agenda for the next five years and calls upon a wide range of organisations, individuals and groups in Scotland to join together to ensure that everyone who can benefit from palliative care will have access to it.
Within the Framework, the Government makes a series of commitments. It will strengthen the role of the new Health and Social Care Partnership Boards in planning for palliative care needs. There is a strong focus on early identification of those who can benefit, better communication across care settings, and more detailed recording of end of life care wishes and preferences.
This is to be heavily underpinned by the principles of improvement science. That will mean local ownership of innovations and interventions that can lead to better care, along with appropriate prototyping and testing of what works best. There will be a strong focus on agreeing and implementing some simple but effective indicators of palliative care quality. Wider research on palliative care will be strengthened by the creation of a Scottish palliative care research forum and there will be a more joined up approach to the delivery of palliative care education across a range of occupations and professions.
Many people will, I hope, welcome the Framework’s endorsement of a stronger public health focus on palliative and end of life care, something which should be further supported by the forthcoming report on this subject from the Scottish Public Health Network. Accordingly, the Framework takes account of the role of communities, social capital and a wide range of assets that can support a more compassionate Scotland when it comes to end of life matters. It also addresses the question of greater cultural openness about end of life issues and the promotion of more discussion and exploration, going well beyond the health and social care sector.
Likewise there is a specific commitment on the need to strengthen palliative care provision for babies, children and young adults in Scotland, responding to research on this issue from the University of York (PDF).
It’s slightly strange for me to be in the position of quoting myself in such a context, but in my oral evidence to the Health and Sport Committee, based on a report I had written for its members, I commented:
“We live in changing times and we have to continue to review what we are doing, even in countries with well-developed palliative care. The key element of that discussion is that we are moving from hospice and palliative care being seen as the business of specialists of one sort or another—the people who have spearheaded the development of the field—to hospice, palliative and end-of-life care becoming everybody’s business. It is becoming more the business of generalists. In a wider context, there is a concern that we should all engage with it as an aspect of civil society and the wider society and communities in which we live.
It is time to take stock of where we have got to. There are lots of good things to acknowledge and celebrate, but we need to ask how much palliative care we are delivering and whether we are properly resourced to do that. My report tries to set out how we go about exploring that question and the indicators that we would need in order to provide some answers. Those indicators are to do with the supply of services, the need that those services are oriented to meet, the extent to which we have good access for and complete coverage of all those who need palliative care and, perhaps most critical and difficult of all, what we know about the outcomes of the care that is provided. How good is it? Is it appropriate? Is it well received by those to whom it is delivered? What is its quality?”
I am confident that the new Strategic Framework for Action provides an entry point into these issues.
It also presents interesting challenges for the field of specialist palliative care. A Framework such as this could scarcely have been dreamed of when the first pioneers of the modern hospice movement took up their cause nearly 50 years ago. If palliative care is to become ’everyone’s business’, then we need to better define the role of specialist services and match their work more precisely to the most complex and challenging needs that undoubtedly exist. ‘Generalist palliative care’ is a strong sub-text of the Framework – but we must also be clear about the role of specialist provision.
That is just one of many issues that need to be worked through in more detail as the Framework unfolds. This is a starting point, not a conclusion. I am looking forward to 2016 and hope to witness the first actions to implement the Framework early in the new year.
This story in the media and trade press:
- Grasping the nettle – what action can we take to improve palliative and end of life care in Scotland? Mark Hazelwood, ehospice, 16/12/15
- Ensuring everyone who needs palliative care gets it in Scotland by 2021, Richard Meade, Marie Curie Scotland blog, 17/12/15
- Care at the end of life: New framework to improve services for all, Scottish Government press release, 18/12/15
- Good Morning Scotland, Professor David Clark interviewed on BBC Radio Scotland, 0715 18/12/15 (available until 18/01/16)
- ‘Joined-up’ plan for palliative care across all health departments, Eleanor Bradford, BBC Scotland News, 18/12/15
- Palliative care given £3.5m boost in new 5-year NHS plan, Lizzy Buchan, The Scotsman, 18/12/15
- Everyone to have palliative care access, pledges Scottish Government, STV, 18/12/15
- Patients to get greater say in end-of-life care, Tom Freeman, The National, 18/12/15
- Scottish government commits to ensuring everyone in Scotland gets good quality palliative and end of life care, Tom Moran, ehospice UK, 18/12/15
- Five-year plan aims to widen access to palliative care for all, Press Association, 18/12/15
- Launch of the Strategic Framework for Action on Palliative and End of Life Care , Scottish Care, 18/12/15
- Hospice UK responds to the Scottish Government’s Strategic Framework for Action – Palliative and End of Life Care, Hospice UK, 18/12/15
- Charities praise £3.5m palliative care measures, Janice Burns, The National, 19/12/15
- New palliative care framework unveiled, The Times, 19/12/15
- Putting palliative care at the heart of health service, Lizzy Buchan, Edinburgh Evening News, 21/12/15
- Palliative care guidance required, Pamela Mackenzie, Assistant Director for Scottish services, Sue Ryder, Herald Scotland Opinion 21/12/2015
- £3m funding boost for new end-of-life care framework in Scotland, Nicola Merrifield, Nursing Times, 21/12/15