The Assisted Dying Bill currently going through its parliamentary stages has shone a spotlight on the quality of care given to people approaching the end of their lives. This has been further amplified by the recent horrific accounts of patients dying on corridors in A&E departments reported by the Royal College of Nursing. One colleague recently told me of a patient on a trolley in a corridor who asked, “can’t I just go somewhere quiet to die”.
The UK has rightly prided itself on having led the world in developing palliative care services, building on Dame Cicely Saunders’ work 60 years ago. These, and many other clinical services, provide excellent relief of suffering and distress for many patients. But patchy services means that the physical, psychological, social or spiritual care needs of others remain unmet or in crisis, leading to unnecessary suffering both for the individual and for their families and carers. As Dame Cicely herself said “How people die remains in the memory of those who live on.”
Whilst good care does not make headlines, bad care certainly does. Much of what needs to be done to improve access to high quality palliative and end of life care is known, but isn’t happening. Key elements were set out in the first End of Life Care Strategy for England as long as 17 years ago. We need to identify people with palliative care needs early in their illness, have open conversations about their wishes and expectations and plan care accordingly; rapidly coordinate care across hospitals, the community, hospices and care homes; and deliver high quality care in all these locations, supporting families and carers both during the individual’s life and after death.
So why is this so difficult? First, as a society we have become unfamiliar with what happens as someone dies. Amongst those over 65 years far more have written a will than have discussed their own preferences for care as they approach the end of life. This avoidance of public and private discussion, means that palliative and end of life care often do not get the profile or priority they deserve within health and social care. In addition, the opportunities provided by modern medicine may divert attention from the fact that someone is in fact dying and thus detract from discussions about their wishes.
Secondly, people have complex needs, often requiring input from multiple health and social care services working across boundaries – and an individual’s needs may change rapidly. Receipt of Palliative Care remains dependent on geography, time of day and day of the week, we need a 24/7 service available to everyone, especially those of lower socioeconomic and minoritised communities who are not getting equal access.
Thirdly, commissioners of end-of-life care do not have all the information they need to plan and monitor the delivery of high-quality care. Regrettably, one important source of information – the national survey of the view of bereaved relatives – was stopped in 2015. More recently, Marie Curie funded a smaller but similar survey, which showed wide variations in the quality of care provided to patients at the end of their lives. We need to ensure that all those working in the health and care service have a far better understanding of Palliative Care and those delivering the training and the time to deliver the highest quality of care.
These problems are not insoluble. The newly raised profile of end-of-life care and the development of a new ten-year plan for the NHS provides a once in a generation opportunity to get this right. To that end, Baroness Ilora Finlay and Rachael Maskell MP have established a palliative and end of life care commission to hear about what needs to be done and to make recommendations to government and parliament. I am honoured to have been asked to chair this commission, which will be solution focused. We will demonstrate how the solutions map onto the three shifts outlined by Wes Streeting, Secretary of State for Health and Social Care, towards prevention, digitalisation and community care. Earlier identification of people needing palliative care can anticipate problems and shift towards preventing suffering in patients and families. A shift to digital care through electronic patient records can share information between all relevant professionals and patients, wherever they are in the country. A shift from hospital to community care is already underway but can and must be accelerated to support people to live as well as possible despite their illness.
We must use the next few months to deliver changes which will benefit the hundreds of thousands of people who will die in this country this year and the increasing numbers of people who are expected to die in future years.
***The Commission’s first report, Palliative Care and End-of-Life Care: Opportunities for England’ (Volume 1), is being launched today in Parliament at 6pm.***
