July 17, 2013, by Emma Thorne

Personalised approach to end of life care: good care and communication take time

Earlier this week an Independent Review commissioned by the Government recommended that the Liverpool Care Pathway be phased out and replaced by personalised care plans for people who are nearing their death.  An independent report by University of Nottingham researchers formed an important part of the evidence upon which the Independent Review made its recommendations. Dr Ruth Parry, who conducted the research alongside Professor Jane Seymour and colleagues, says that compassionate care comes at a cost. 

A review of research evidence produced by myself and a group of experts in end of life care research and education at the School of Nursing, Midwifery and Physiotherapy,  formed an influential part of the evidence examined by Baroness Neuberger and her panel in their Independent Review of the Liverpool Care Pathway. The panel published their findings: ‘More Care, Less Pathway’ early this week. Our review of research relating to the pathway was made public alongside it.  Another main source of evidence the panel considered comprised bereaved people’s accounts of their experiences, often highly distressing. Unsurprisingly, this part of the panel’s findings has been covered widely in the media. I’d like to take the time here to highlight some points that have received less publicity.

As ‘More Care, Less Pathway’ notes, there is just no strong evidence out there about either the potential benefits or potential adverse effects and risks of ‘pathways’ for the dying phase in end of life care. The ideas behind the pathway are reasonable and seem like a logical way to try to ensure best practice in patient care. But, as we note in our report, interventions designed from a logical, rational basis do not always live up to their promise when applied in the complicated, social world of healthcare where people must work together in the face of distressing and complex human problems.  The Independent Review found that there have been significant failures to apply the pathway guidance correctly in the real and often stretched circumstances of inpatient healthcare.  For this reason, the review panel has recommended abandoning the ‘pathway’ term, and ensuring individual care plans are drawn up for individual patients.

The panel points out that well below one per cent of research funding is devoted to end of life care, and demands more research on people’s experiences of end of life care. Noting that care for dying people and their loved ones requires staff to have excellent communication skills, the panel calls for systematic research about the communication practices needed for good end of life care, and for associated support and training for staff.  The Sue Ryder Care Research Group at the University of Nottingham does just this kind of work, researching end of life experiences and communication, and working alongside practitioners and educators to generate better understandings of the challenges of care, and to raise standards.

One important challenge for those wishing to commission and provide compassionate care and excellent communication with dying people and their families is the time that compassion and communication take.  I believe this matter has been under-emphasised in recent calls for more compassionate care. Research finds, rather unsurprisingly, that when healthcare workers are exhausted and overstretched, levels of compassion and dignity in care fall. Healthcare staff need to feel cared for, and they need to have enough time not only for training, but also for support – such as through ‘rounds’ which provide staff with the time and opportunity to explore and share some of the challenging emotional issues that arise in caring for patients and families.  Other research findings, also rather unsurprising, indicate that healthcare conversations take longer when emotional and sensitive issues are discussed.  In my view, an informed public debate about end of life care, and compassionate care in general, requires recognition that ensuring dignified, compassionate healthcare and excellent communication means giving staff more time for both training and support – and this has implications for the public purse.

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