The way we think about Advance Care Planning (ACP) needs to be different as we look to the future. If we want to maximise its value, there are areas that must be reconsidered and academics, practitioners, policy makers and others have much to offer to the debate how best to amend and improve it moving forward.
In making this call, we are not questioning the value of ACP, in fact quite the opposite. We have known from personal and professional experiences that the act of making plans for the future is much more likely to enable personal aspirations and goals to be achieved, as well as outcomes of palliative and end of life care are also improved.
However, what we also know is that this central tenet of high-quality end of life care in the UK is often unrealised, is mistrusted by some and has limited uptake despite significant investment in a variety of approaches designed and delivered within the health system and beyond.
The experiences of many during the recent pandemic revealed significant flaws across health and social care systems related to ACP as well as a desire on the part of many members of the public to actively participate in their own plans and those close to them as they approached the end of their life. It is important we learn from these insights.
Our Future Planning: Advance Care Planning Reconsidered conference allows just that, and as we do so, we will invite all present to think anew about how we invite people to plan this important part of their life, and review how we, as professionals, respond.
By attending the conference, you will have the opportunity to reflect on a variety of experiences and stories including those told by advocates of lived experience of ACP – families and carers, alongside professionals who are advocating for different approaches.
We have realised in our preparation for the event just how intricate and multi-faceted advance care planning is as an activity and how significant the chances are for it to go wrong or fail to deliver what may have been promised.
We will explore moments where professionals failed to act on pre-determined plans; where individuals felt unheard in their aspirations for a different end of life despite making the effort to communicate them.
We want to shine a light on societal, structural and system wide challenges that contribute to a reluctance from a wide range of people to engage in ACP. We will give attention to the notions of choice, power and agency in these considerations. Modes of communication and the language used will also feature in our programme.
Our aim is to move to new solutions that take effort from one which is often aspirational to one that truly serves as a cornerstone of a better ending for those that are dying and easier grief for those left behind.
We are asking advocates of lived experience to propose goals that the public and professionals can work on together to improve ACP. These will emerge in the course of the conference but we anticipate that they will focus on aspects of practice such as professional accountability; new ways of exploring and recording personal goals; sharing power and working beyond the health system.
We welcome professionals from all areas of health and social care; other practitioners from the wider death system and beyond. A warm welcome is also made to advocates of lived experience; people with a story to tell that helps us improve the processes of ACP in the future.
Our Future Planning: Advance Care Planning Reconsidered conference planned for January 2024 will explore and draw together multiple voices and perspectives to throw light on this complex set of conversations, decisions, and actions for improving the essential practice, of ACP.
Subsidised/free places are available to these individuals on request. To find out more contact education@stchristophers.org.uk
Author
Heather Richardson
Director of Education, Research and End of Life Policy at St Christopher’s Hospice, Honorary Professor in the International Observatory on End of Life Care at Lancaster University and Senior Research Fellow, Harris Manchester College, University of Oxford.
Heather Richardson currently works as the Director of Education, Research and End of Life Policy at St Christopher’s Hospice. She previously worked as Joint Chief Executive, then CEO of St Christopher’s over a period of eight years. In the past she has held the role of National Clinical Lead for Hospice UK, and worked as Clinical Director, then Strategy Advisor to St. Joseph’s Hospice in East London prior to her move at St Christopher’s. She has also worked as an associate with the Innovation Unit based in London.
Heather is a registered general and mental health nurse and has worked in hospice/palliative care since 1988. She has a PhD, her research concerned with users’ experience of day hospice. More recently she has developed a research interest around public health and end of life care and is involved in global programmes of learning for palliative care leaders. She currently serves as an honorary professor in palliative care at Lancaster University and has recently joined Harris Manchester College in Oxford as a Senior Research Fellow. In the past she has received the International Palliative Nurse of the Year award issued by the International Journal of Palliative Nursing and other awards related to her role in innovation in healthcare.
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