New national strategy must commit to palliative and end of life care being available to all - Richard Meade

As the Covid-19 pandemic has raged across Scotland and tragically taken the lives of over 10,000 Scots to-date, the number of people also dying of a terminal illness, such as heart failure, dementia, cancer and many other conditions has continued as it has in every other year, with over 60,000 such deaths in Scotland in 2020-21.

Richard Meade, Head of Policy and Public Affairs, Scotland, Marie Curie

Although the vast majority of these deaths were to be expected, the circumstances in which people died were more unusual. We have seen people dying in hospital without family or loved ones to support them in their final moments.

There has been a 40 per cent increase in the number of people dying at home with a terminal condition instead of in hospital – more than 6,000 extra home deaths. This has put huge pressure on primary and social care, as well as community palliative care services, but mostly on those family and friends who have undoubtedly had to carry out the bulk of the care for their dying loved ones, and likely without the physical, emotional and financial support and care they needed to be a carer.

This trend of home deaths has continued even as waves of Covid have dropped and hospital numbers have fallen. This suggests that this trend might continue into the short and medium term. Over the last ten years there has been a steady increase in home deaths, and prior to Covid this had expected to continue, but the pandemic has accelerated it considerably. This trend raises key questions that must be answered. What kind of support has been available to support people dying at home, as well as their carers? Why have more people been able to die at home than before?

At Marie Curie, we saw more patients than ever before in Scotland, largely driven by an increase in demand for our nursing services in the community. However, we still could not meet demand. We also started to see patients much later than we would have done previously and much closer to the end of their lives.

We saw healthcare professionals, as well as the public, struggle with conversations around dying, death and bereavement which was demonstrated with some very inappropriate uses of Do Not Attempt Resuscitate Orders as a result of incredibly stretched and overwhelmed health and social care workforces, coupled with a long-standing issue of lack of palliative care training. This caused confusion, distress and upset among families and workforces across Scotland, and will have a long-lasting impact on all involved which could result in much more complex grief.

The Scottish Government recently announced it will hold its own public inquiry into the Covid-19 pandemic, which is both welcome and hugely important. The inquiry should be as much about learning as it is about finding out what went wrong during the pandemic.

It also needs to be much wider in scope than a precision look at the direct impact of Covid. The indirect impact of Covid on the wider health and social care system, including the care of those dying of terminal conditions both from the perspectives of the patient and family carers providing support at home, must be given the scrutiny it deserves.

In the Programme for Government 2021-22, the Scottish Government committed to a new national strategy for palliative and end of life care; it must show the same commitment to the Covid-19 inquiry so lessons can be learned for future to ensure that palliative care services can be accessed by everyone, and all end of life experiences are dignified and compassionate.

Richard Meade, Head of Policy Scotland, Marie Curie