LIVE FROM THE 9th EAPC WORLD RESEARCH CONGRESS IN DUBLIN . . .
Continuing our occasional series of posts from members of the ACTION Consortium about their European study that aims to support people with advanced cancer to discuss end-of-life wishes.
Kristian Pollock, Glenys Caswell and Jane Seymour raise the issue of whether Advance Care Planning should be a core task of professionals in all healthcare settings, or is better considered as a specialist skill carried out by trained facilitators.
The UK has recently been ranked as the best place in the world to die and is recognised for excellence in palliative care. There is a growing social and policy focus on discussion of death and dying and the quality of end-of-life care.
However, several influential reports published this year highlight concerns about shortcomings and variability in quality of care and widespread social, cultural and geographical inequality in access. (See links below).
Normalising discussion of death and dying, particularly through the formulation of Advance Care Plans (ACPs), has been widely promoted as a means of improving the patient experience of end-of-life care by enabling the expression of preferences and the exercise of choice. It is considered important that such discussions are initiated substantially in advance of death to allow time for plans to be made and preparations put in place, especially to protect patient autonomy in the event of lost capacity.
The End of Life Care Strategy for England includes a commitment to ensure that every patient should have the opportunity to discuss ACP. The goal has been to develop ACP as a task for healthcare professionals working in a wide range of specialist and community services. However, recent evidence confirms the continuing reluctance of healthcare professionals, as well as patients and carers, to engage in discussion of death and dying or forward planning. Policy support has not been accompanied by a clear implementation strategy, or resources to support professional training. Consequently, healthcare professionals often report uncertainty and a lack of confidence in broaching discussion about end-of- life. ACP remains uncommon, especially among patients affected by conditions other than cancer. A recent report from the Royal College of Physicians found that of 9,302 deaths that took place in hospital, only 4% (415) of the patients had an advance care plan.
Discussion tends to occur in a cursory, ad hoc manner and to focus on a limited range of topics, such as preferences for cardiopulmonary resuscitation and preferred place of death. By making ACP everybody’s business, there is a risk that no one assumes responsibility for making sure that it occurs. It is in this context that the ACTION study is investigating the value of a structured ACP intervention, delivered by trained and highly skilled palliative care professionals, in enabling an in-depth discussion of cancer patients’ goals and values for future care. ACTION involves an RCT (randomised control trial) and embedded qualitative study in six European countries. The findings, available in 2018, will provide the most comprehensive evidence to date of patient responses to ACP and the impact of a specialised intervention on improving patients’ control of symptoms and quality of life.
If you’re in Dublin for the EAPC World Research Congress, please come along to the Advance Care Planning session in the Elan Theatre on Saturday 11 June at 09h00. This session includes a presentation from ACTION Consortium member, Prof Agnes van der Heide, on Methodological Challenges in the International ACP ACTION trial.
More about the authors . . .
Kristian Pollock is a Principal Research Fellow at the School of Health Sciences at the University of Nottingham.
Glenys Caswell is a Senior Research Fellow at the School of Health Sciences at the University of Nottingham.
Jane Seymour is Professor of Palliative and End of Life Care at the University of Sheffield.
Links and resources
- Dying without dignity: Investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care.
- End-of-life care and physician-assisted dying: 1 Setting the scene 2 Public dialogue 3 Reflections and recommendations (BMA).
- End of Life Care Audit: Dying in Hospital (Royal College of Physicians).
- Read more posts about Advance Care Planning (including those from the ACTION Consortium) on the EAPC Blog. Look out for more posts in this series in the coming months.
Welcome to Dublin – 9th EAPC World Research Congress. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl
Tervetuloa Dubliniin – 9th EAPC World Research Congress. Seuraa kongressia Twitterissä @EAPCOnlus – kongressin virallinen hashtag on #eapc2016irl
Willkommen in Dublin – 9th EAPC World Research Congress. Folgt uns auf Twitter @EAPCOnlus – Unser offizieller Kongress Hashtag ist #eapc2016irl
Benvenuto a Dublino – 9th EAPC World Research Congress. Seguici su Twitter @EAPCOnlus – il hashtag ufficiale del congresso è #eapc2016irl