A team of international researchers, Marjolein Gysels, (The Netherlands), Bridget Johnston (UK), Claudia Bausewein (Germany), Hristina Petkova (UK) and Fliss Murtagh (UK), explain the background to their longer article published in the March/April issue of the European Journal of Palliative Care.
In 2006, we undertook a scoping exercise at King’s College London on generalist services for adults at the end of life for the Service Delivery and Organisation Programme (SDO) of The National Institute for Health Research. From this work, the issues on place of care, place of death and transitions in care of people who are dying of non-malignant disease emerged as one of the priorities for future research.
Responding to SDO’s call for a systematic review, Fliss Murtagh took on the challenge to lead this review to draw together this huge unexplored area. The review combined the published evidence on preferences for place of care and death, factors influencing place of death and key transitions towards the end of life. The review provided important insights into the complex and inter-related nature of the factors influencing place of death in non-malignant conditions, which allowed the formulation of clear implications for practice, policy and research. These include the importance of giving attention to achieving preferred place of death, wherever that place is; carer support, especially in the context of longer illness trajectories; the imbalance of those with lower socio-economic status who achieve lower rates of home death; advance care planning among older people; and innovative approaches to support those with complex co-morbidities in the community.
Because of the predicted rapid rise in the number of people who will be affected by dementia, and the challenges to care systems which are not attuned to their specific needs, we found it important to write up the insights that emerged from the qualitative evidence. End of life decision-making is a crucial issue for those with dementia and their families. Yet there is a real lack of knowledge and acknowledgement of dementia as a terminal illness. Family carers are called upon to make difficult decisions for patients who lack capacity, but are often unprepared for this, and for the inevitable crises, which adds to the burden of caring.
Early information, open discussions, and advance care planning are imperative. People with dementia often experience multiple transitions throughout their illness and even during one episode. Relocations are unsettling and may even be life threatening. If transitions can be anticipated, considered, and discussed, then these adverse effects may be reduced. Overall, there is a real need for combining expertise from the fields of palliative care and dementia care to help meet the challenges effectively.
Read the longer article in European Journal of Palliative Care
This post relates to a longer article, ‘What influences place of care and death of older people with advanced dementia? A systematic review of qualitative evidence’ by Marjolein Gysels, Bridget Johnston, Claudia Bausewein, Hristina Petkova, Fliss Murtagh, published in the March/April 2015 issue of the European Journal of Palliative Care (vol. 22.2). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.
Links and resources
- Murtagh FEM et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. Final report. NIHR Service Delivery and Organisation programme; 2012. Available to download as a PDF. (This work presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the authors, and not necessarily those of the UK National Health Service, NIHR or Department of Health).
- Van der Steen J et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine 2014, Vol. 28(3) 197–209. Available to download as a PDF from the EAPC website.
More about the authors
Marjolein Gysels, Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, the Netherlands, and King’s College London, Department of Palliative Care, UK; Bridget Johnston, University of Nottingham, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, Nottingham, UK; Claudia Bausewein, Munich University Hospital, Ludwig Maximilians University Munich, Germany; Hristina Petkova, King’s College London, Institute of Psychiatry, UK; and Fliss Murtagh, King’s College London, Department of Palliative Care, London, UK.