An end of life care strategy for Scotland? by David Clark

Billy Connolly’s Big Send Off has done a lot to raise public interest in funerals, rituals and memorials of various kinds, and has touched and  amused us in the process.  The recent and hugely successful  Dying Matters  awareness week – You Only Die Once (#YODO) – has also drawn attention to end of life care needs across society and how they might be met. At the global level, the World Health Assembly seems set to adopt a motion on the need for palliative care to be integrated into national health policies.  From a variety of quarters there are prompts to our thinking about how we deal with end of life issues – socially, emotionally, clinically and culturally.

Reflecting on this wider context, it is becoming increasingly clear to me that Scotland does not benefit from some of the infrastructure and resources for end of life care that it urgently requires – and which are to be found in other countries, including our nearest neighbours.

Our neighbours

Ireland has a Hospice Friendly Hospitals  programme that has invested in excess of 10m Euros in work to build a culture that supports the needs of dying and bereaved people in the hospital context. There is also a National Forum on End of Life in Ireland  which in the last six months has started to develop a report card on the performance of the Government in securing a good end-of-life experience for its people. It has also promoted a series of public hearings on end of life issues and has developed Think Ahead  – a citizen-led advance planning tool. In Northern Ireland colleagues work collaboratively with those from the Republic in a cross border collaboration called the All Ireland Institute of Hospice and Palliative Care that is backed by major philanthropic donors as well as government research funders.
England has had a national strategy for end of life care  that has now evolved into part of the NHS Improving Quality programme and also supports the Dying Matters initiative. It benefits too from the support of a National End of Life Care Intelligence Network  and from the findings of a National Bereavement Survey.
In Wales, the situation is closer to ours in Scotland. Marie Curie has recently published a useful report called Listening to Dying People in Wales . Subsequent coverage of the report has highlighted some of the deficiencies in information about end of life care that exist in the Principality. Like Scotland, there is no national survey of bereaved relatives. But there is a Welsh  national centre for palliative care research.

Challenges for Scotland

Of course, in Scotland we have benefitted from the framework and action plan known as Living and Dying Well . It aims to ‘enable all NHS Boards to plan and develop services which will embed a cohesive and equitable approach to the delivery of palliative and end of life care for patients and families living with and dying from any advanced, progressive or incurable condition across all care settings in Scotland’. In 2012 a review of Living and Dying Well concluded that there was: ‘an enormous amount of work taking place across settings, across sectors and across Scotland.  The reports provide compelling evidence of a high level of energy and commitment on the part of individuals and organisations.  Three years on from the launch of Living and Dying Well  a focus on improving palliative and end of life care is being sustained’. We also have senior academics actively involved in palliative and end of life care research. There is  important work being undertaken by the Scottish Partnership for Palliative Care and its public engagement arm Good Life, Good Death, Good Grief . But I am not convinced we have an integrated approach to the challenges that face us.
I was encouraged when earlier this year an all- party group met at Holyrood to discuss the question ‘Are we living and dying well yet?’ A report  of that discussion has just been published by Marie Curie Scotland and the Scottish Partnership for Palliative Care. About 100 people took part in the Holyrood meeting, mainly specialists and activists in palliative care (contrast that to 300 lay people that gathered in Edinburgh a few weeks later to listen to Baroness Julia Neuberger speaking on a similar topic). My sense at the Holyrood meeting was that in the room that night there was considerable enthusiasm for a wide ranging new end of life strategy for Scotland. The official report of the meeting, by contrast seems muted, and simply calls on the government to do that to which it is already committed – to develop something called a Strategic Framework for Action on palliative care.

A wider approach

My own perspective, outlined in a recent article in The Scotsman, is that this approach is too timid. We need to build on the assets and enthusiasms we have across many sectors of Scottish life.  We must stop framing end of life issues as the sole responsibility of the health and social care system and of palliative care in particular. We need to look at the public and professional education needs and opportunities; the potential to engage with business;  the role of commuity organisations and leaders;  as well as the contributions to be made from the arts, culture and wider media.

The provision of palliative care is crucial to good end of life care. But it is not a strategy for end of life care and the cognate issues we face in a society which deals with over 50,000 deaths per year.  Let’s talk more to our neighbours  – as well as others further afield –  and then think boldly about how we can develop an all embracing and robust strategy for end of life care in Scotland in the coming years.

David Clark