By Professor Jonathan Koffman
Wolfson Palliative Care Research Centre, Hull York Medical School
Electronic Palliative Care Coordination Systems (EPaCCS) to facilitate end-of life-care decision-making: What is the evidence that their potential benefits are shared fairly?
The Race Equality Foundation is currently hosting group discussions around better quality of palliative and end-of-life care for people living with dementia and their families from Black, Asian and minority ethnic communities. As part of these discussions, we explored Electronic Palliative Care Coordination Systems (EPaCCS) and wanted to delve deeper into understanding in what way EPaCCS serve people living with life-limiting illnesses that include dementia and to what extent they have been extended equitably across society.
Over 600,000 UK people die per year. Most people die in hospitals, but many want to die at home.Advance care planning can support the provision of vital person and family-centred end-of-life care decision-making. Specifically, this process includes conversations between individuals with life-limiting illnesses, family members and health professionals about how an individual contemplates their future death, decisions about preferences regarding the place of death and resuscitation, all of which are intended to maximise important end-of-life experiences and outcomes of care.
Evidence has shown that advance care planning can provide important opportunities for discussion of diagnosis and prognosis so that end-of-life care and treatment decisions match with people’s preferences, improving symptom discussions, treatment and reducing misunderstandings and conflict between health professionals and families. Advance care planning may also reduce unnecessary emergency hospital admissions, lead to fewer interventions of limited clinical value, lead to earlier access to palliative care, result in fewer hospital deaths and a greater chance of an individual dying where they want to die. Advance care planning is also thought to help families prepare for the death of a loved one, resolve family conflict and lead to better bereavement outcomes.
Electronic Palliative Care Coordination Systems (referred to as “EPaCCS”), of which ‘Coordinate my Care’, is a good example, have been specifically designed to facilitate enable advance care planning and end-of-life care decision-making to increase the likelihood of delivering end-of-life care following patient wishes and priorities. This information can be shared electronically with health professionals in hospitals, GPs, and emergency health services when crises occur.
Social determinants of health that include socioeconomic position, ethnicity, gender and age are associated with end-of-life experiences and outcomes of care. Studies have consistently shown that end-of-life experiences and outcomes of care, caregiving experiences for family members and grief- are often negatively affected by the presence of social determinants of health, either in combination or isolation
Despite an emphasis on the potential benefits of advance care planning, increasingly facilitated by EPaCCS, no UK evidence currently exists that describes how social determinants of health are associated with advance care planning and end-of-life care decisions that EPaCCS are tasked to deliver. Research from the USA shows individuals from minority ethnic communities and those from low socioeconomic positions are disadvantaged concerning these activities. Furthermore, we do not know if social determinants of health are associated with the creation of EPaCCS records or the end-of-life care decisions made within them. We need answers to these key questions to inform the delivery of fair end-of-life care decision-making for all those who wish to engage in it.
A new study conducted by researchers at Hull York Medical School, the University of Leeds and the Royal Marsden Hospital aims to describe the characteristics of people creating EPaCCS records and explore the association of social determinants of health with the content of advance care plans contained within EPaCCS to support end-of-life decision-making. The study will examine EPaCCS located in London, Leeds and Bradford, cities characterised by ethnic diversity and in some area’s profound deprivation. The research team anticipate providing important evidence of the ways social determinants of health are associated with the advance care planning decisions contained within EPaCCS. Depending on the study’s findings, the research team will collaborate with patients, their families, health professionals, policymakers, the Office for Health Improvement and Disparities and NHS England to progress the exploratory ‘upstream’ findings to devise solutions leading to the equitable creation of EPaCCS for all.
