Learning from end of life experiences

Categories: Care.

The National End of Life Care Programme has today (26 October) issued a statement referring to recent media coverage, which has highlighted a number of examples where people have reported that care in the last days of life has not been of high quality. 

Dr Bee Wee, President of the Association for Palliative Medicine, commented: “We know that there are some concerns amongst the public and some professionals about integrated care pathways. We want to take time to identify and explore any concerns properly, look at the evidence and find ways to improve practice. 

“In the meantime, we must remember that there are people today approaching the end of their lives, and that they and their families are going through a tremendously vulnerable time. Our members are already seeing heightened anxieties in daily practice due to the misrepresentation of tools which are designed to improve end of life care. I would urge all to take a balanced and considered approach when debating these issues.” 

The cases quoted often mention the Liverpool Care Pathway, a recognised model of good practice that has contributed to improvements in end of life care since it was developed in the 1990s. The Liverpool Care Pathway has much support from organisations involved in the delivery of end of life care, and a consensus statement supporting its use was released in September by more than 20 leading organisations. 

Professor Mayur Lakhani, Chair of the Dying Matters Coalition, said: “It’s vital that everyone receives good quality care at the end of life and that this is informed and driven by evidence and people’s personal experience. The Liverpool Care Pathway has enabled thousands of people to die well according to their wishes, but poor experiences must be explored, acknowledged and learnt from.”

Plans for continuing improvement

Training and communication issues were common to many of the examples used in media coverage. The statement from the National End of Life Care Programme, the Dying Matters Coalition and the Association for Palliative Medicine states that work will focus on listening to the views of people with personal experience of end of life care, including the Liverpool Care Pathway and listening to the views of healthcare professionals working in end of life care.

To continue improvements in end of life care The National End of Life Care Programme will work with a number of hospital Trusts to undertake a snapshot review of complaints received about end of life care. This will include complaints relating to the use of the Liverpool Care Pathway and any communication or perceived communication issues. And Dying Matters will work with people whose loved ones have been cared for by health and social care staff using the Liverpool Care Pathway, to explore what worked well and what could have been done better.

The Association for Palliative Medicine and a range of national organisations will work to understand the opinions of clinicians regarding Integrated Care Pathways (ICPs) for the last days of life. These ICPs, of which the Liverpool Care Pathway is one, provide a template for co-ordinated multidisciplinary care and are designed to reduce variation in practice and enable the same high quality care to be provided for all.

Claire Henry, Director of the National End of Life Care Programme, said: “We know from the national survey of bereaved people, published in July, that 75% of people rate the end of life care their loved one received as ‘good’, ‘excellent’ or ‘outstanding’. However, we also know that there are improvements to be made so that every person receives the same high quality of care at the end of their life. 

“I’m pleased that these projects will listen carefully to the experiences of members of the public and of professionals. This is crucial if we are to continue improving the care of dying people in our society.”

These projects are being developed during the coming months and findings will be shared with the Department of Health and the NHS Commissioning Board.

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