27 May 2021
The Institute for Public Policy Research (IPPR) are an independent charitable organisation and the UK’s leading progressive think tank. The end of April saw the publication of ‘The State of End of Life Care: building back better after Covid-19’ a report examining the state of end of life care in the England in the wake of the pandemic and, if necessary, what improvements could be made.
The report uses a mixed method approach to inform the future of end-of-life care in England. The quantitative analysis was led by Imperial College London, in collaboration with the University of Edinburgh. This was supplemented by qualitative research undertaken by Imperial College and the IPPR. The former led formal semi-structured interviews, exploring attitudes to end of life care amongst twenty carers whilst the IPPR explored attitudes from healthcare leaders, commissioners, professionals and policy experts.
The report found that Covid-19 has caused serious disruption to end of life care provision in England. Excess deaths have spiked due to the pandemic, putting more strain on providers. The hospice sector has seen fundraising seriously depleted, thus putting beds and continuity of care at risk. Place of death has shifted from acute to community settings, without proper proactive planning and resourcing. Difficulties in social care – where life expectancy of residents is between 12 and 24 months – have impacted wellbeing and quality of life for many at the end of their lives.
The report recommends that a focus on recovery will not, in itself, be enough to relieve the strain on end-of-life services due to our aging population and projected increases in the number of deaths (even without the effect of the COVID-19 pandemic). The current reform agenda, of a planned move to a community-focused, personalised and more integrated approach to end of life, is the correct strategy but there is a long way to go to make this a reality. This is because:
The report recommends that there should be a managed and resourced shift to community-led end of life care. This would be a model led by the community, through which people receive the specialist and non-specialist services that are right for them. The over-arching principle is that end-of-life care ‘should provide everyone with the right care, from the right person, at the right time’. To break this down further this means that:
Provide Everyone… Good end of life care is a right that should be afforded to everyone, equally, in line with the founding principles of the NHS. This means significant and measurable progress against the inequalities that have often defined this agenda. They recommend that the UK government breaks the link between someone’s ability to advocate for good care and outcomes, by hiring 2,700 new‘end of life care advocates’ – based on care coordinator roles.
With the right care…. The shift to a community-led model should not be indiscriminate. It should be seen as a way to get people the care they need, both specialist and non-specialist. The report recommends more resource for social, community and home care – including a specific ‘end of life care premium’ for the care of those living in the most deprived parts of the country.
From the right person… Access to appropriate care from a suitably qualified and trained professional has been considered an enabler of high-quality end of life care across 15 years of strategy. Yet dying people and their carers still have concerns. Significant efforts should be made to ensure quality training for all, through a new end of life care academy– aimed not only at NHS and social care staff, but also informal carers
At the right time… Personalised care has the potential to transform end of life care. However, there is space to go further in ensuring personalised care is flexible. The authors recommend providing people a formal review of their care plan every three months, to ensure their wishes are well represented.
Recommendations in the report are aimed at the Westminster government in England, recognising devolution of health in the UK nations. This project also generated insights on Scotland, which are presented throughout. The IPPR hope that the report and its conclusions will prove useful beyond the England focus.
The full report is available here