Time for Action: Why end of life care needs to improve, and what we need to do next
In the weeks surrounding the general election a number of important independent reports were published which together contained recommendations about why and how people’s experience and quality of care at the end of life needs to be improved:
• What’s important to me: a Review of Choice in End of Life Care, the report of the Choice in End of Life Care Programme Board commissioned by the last government (‘Choice Review’)
• The House of Commons Health (Select) Committee published a report on end of life carei
• Dying without dignity. Investigations by the Parliamentary and Health Service Ombudsman (PHSO) into complaints about end of life care
All these came after One Chance to Get it Right was published in 2014 by the Leadership Alliance for the Care of Dying People, following the independent review into the Liverpool Care Pathway led by Baroness Neuberger. This identified five priorities for the care of dying people.
Although much has been achieved since the first national End of Life Care Strategy was published in 2008, the scale and rate of change need now to be stepped up significantly if we are to ensure that everybody receives high-quality end of life care at the right time and in at the right place. There are still too many stories of people receiving inadequate care at the end of their livesii. Staff surveys continue to show low levels of confidence and insufficient training in end of life care, particularly in relation to symptom control and communicationiii. Well-documented inequities in access to palliative and end of life care, whether by diagnosis, age, gender, ethnicity, deprivation, or geography, have persisted for too longiv (also see page 3). Although a series of national documents have said that care of dying people is core business for the NHSv, the reality does not always reflect this.
Collectively these reports have created a powerful case for an accelerated step change in the priority that is given to caring for people at the end of life.
Whilst some of the recommendations the reports contain will require a response from the new government, many of them can be implemented straightaway, and indeed are already underway in some places. For example, we know that the majority of CCGs either have operational Electronic Palliative Care Co-ordination Systems or have work underway to achieve thatvi. Many – perhaps the majority – of the findings and recommendations in these reports are not new. We know what needs to be done; the challenge now is to do more of it, faster.