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Dying and bereavement: what patients and families want at the end of life

Why workforce gaps and overstretched services remain the biggest hurdle to getting it right

Why nursing workforce gaps and overstretched services are the biggest hurdle to getting it right, even amid COVID-19

With COVID-19 vaccinations progressing and the UK reopening it is tempting to focus solely on the future but as we emerge from lockdown it is vital we reflect on the past year and the lessons we can learn.

Staff delivering palliative and end of life care have faced extraordinary challenges, not least because the number of people dying in the UK increased dramatically.

The best possible experience at the end of life

An average 604,000 people died each year between 2015 and 2019. This rose 15% to 695,000 in 2020. End of life care has had a critical role in

Why nursing workforce gaps and overstretched services are the biggest hurdle to getting it right, even amid COVID-19

A nurse in PPE taking a patient's blood pressure during a home visit
Picture: iStock

With COVID-19 vaccinations progressing and the UK reopening it is tempting to focus solely on the future – but as we emerge from lockdown it is vital we reflect on the past year and the lessons we can learn.

Staff delivering palliative and end of life care have faced extraordinary challenges, not least because the number of people dying in the UK increased dramatically.

The best possible experience at the end of life

An average 604,000 people died each year between 2015 and 2019. This rose 15% to 695,000 in 2020. End of life care has had a critical role in the COVID-19 response, with staff often delivering care in unique circumstances.

Making sure end of life provision is fit for the future is the focus of Marie Curie’s Better End of Life programme, launched in April. The programme is a collaboration with Cicely Saunders Institute, King’s College London, Hull York Medical School, the University of Hull and the University of Cambridge.

Over the next three years, it will examine the state of dying, death and bereavement in the UK. It will propose a policy agenda focused on ensuring everyone has the best possible experience at the end of life, with health and social care services designed to meet this ambition.

What teams and services need to make this happen

This is a tall order. Nurses will be instrumental in making this happen by collaborating as teams and across organisations. However, the real challenge remains in workforce gaps and having the right level of resources on the front line.

The programme’s first report, which explored the impact of COVID-19 on dying, death and bereavement, found there has been a dramatic increase in the number of people dying in their own homes, even outside of pandemic peaks. As a result, GP surgeries, community teams and end of life care services provided more care, in more complex cases, to more people in their homes. Nursing and care teams achieved amazing work in these difficult circumstances.

‘We simply cannot ignore these lessons. With our ageing population in the UK, 100,000 more people are expected to die each year by 2040’

We also found that palliative care in all settings was stretched to – and in many cases beyond – capacity. We should celebrate the innovation of our teams and networks, who made rapid adaptations to services, upskilled colleagues and supported other services.

However, 2020 has also highlighted systemic weaknesses that must be urgently addressed to meet the rising need for palliative and end of life care.

A nurse in a face mask and visor talks to an older patient
Picture: iStock

Limitations to providing high quality end of life care

In October 2020, a Nursing Standard-Marie Curie survey highlighted that one in three nurses felt they did not have the capacity to provide high quality end of life care as deaths rose during the first wave. While it is clear that everyone did their best in unprecedented circumstances, this will doubtlessly have affected the end of life experience of too many people, as well as the health and well-being of nurses themselves.

Many palliative and end of life care services have experienced shortages of essential personal protective equipment, medication, equipment and staff – mirroring shortages experienced elsewhere on the front line. We found end of life care services were not always recognised as the front line in the early stages of the pandemic, and not prioritised appropriately.

‘Lockdowns and visiting restrictions have compounded the sense of loss, and too often people were unable to access, or unaware of, bereavement support services’

We simply cannot ignore these lessons. With our ageing population in the UK, 100,000 more people are expected to die each year by 2040. Coupled with ongoing trends towards a higher proportion of people dying in community settings, we need a long-term solution to ensure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home always receive the support they need.

Long-term change is also needed to ensure commissioners and providers of health and social care services are able to work in close collaboration to address the different needs people have towards the end of their life. This must involve working closely with people and communities.

Addressing the impact on bereaved families and front-line staff

Finally, we must remember the profound impact the pandemic and lockdowns have had on those left behind – both bereaved families and nursing and other professionals.

Lockdowns and visiting restrictions have compounded the sense of loss, and too often people were unable to access, or unaware of, bereavement support services. Improvement in the availability of and access to bereavement support is vital to support people more effectively now and in the future.

The Better End of Life programme has never been more crucial. As we have seen in its first report, COVID-19 has highlighted challenges in the way we deliver palliative and end of life care that will only become more pronounced in future.

This programme will give national and local decision-makers across the UK the evidence they need to make the urgent choices required to improve end of life experiences for all.


 Julie Pearce, chief nurse and executive director of quality and caring services at Marie Curie

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