Associate Feature: Getting it Right for Everyone at End of Life

Scotland’s population is ageing, which is good news because it means more of us are living longer, and into older age. But as a result, it will create challenges for our health and social care services, including palliative care.

Palliative care supports people who are terminally ill and approaching the end of life and can provide pain and symptom control as well as emotional and spiritual support. However, we know that not everyone is getting the care and support they need, and this has a direct impact on their quality of life and experience as they approach the end of life. Various evidence suggests that anywhere between a quarter and up to half of all people do not get some or all of the care and support they need.

This gap in care could grow in the coming years, as by 2040 nearly 63,000 people will die every year needing some palliative care support (95% of all people who die), which is nearly 11,000 more people a year than now.

We know that more people will be dying of more than one condition, with a substantial increase in the number of people dying with dementia and cancer. People will also be significantly likely to be living with different chronic and life-long conditions as they get older which will potentially make their care needs more complex and challenging to meet.

Marie Curie research suggests that by 2040 nearly two-thirds of people will be dying in the community either at home or in a care home, until recently most people died in hospital. Scottish Government statistics has shown that the average time a person spends in the community during their last six months of life has been increasing gradually every year for a decade.

Most people would like to be cared for at home or in their care home for as long as possible, so this shift into the community is good news, but only if it comes with the adequate level of person-centred support. During the COVID19 pandemic we have seen over a third more deaths at home for people with terminal conditions than normal. Unfortunately, we know that for many of those the experience has been distressing. Families have reported a lack of support to help manage pain and symptom control for dying relatives, as well as a lack of out hours support. This has put huge pressure on family carers.

This is not only just a problem for the dying person and their families but can have huge knock on effects in the health and social care system. Terminally ill people not receiving palliative care or having anticipatory care plans in place are much more likely to have unplanned hospital admissions, A&E admissions and stay in hospital for longer while social care assessments and care packages are found. These are all costly and potentially unnecessary interventions, particularly given existing, long-standing pressures on the NHS and social care systems, which have recently been exacerbated by the pandemic.

In its latest programme for Government, the Scottish Government has committed to developing a new national strategy for palliative care, and also committed to appointing a national clinical lead in the SNP manifesto 2021-22. These are hugely important commitments that are very welcome. However, we now need to see action and for Government to take the lead in addressing these system-wide problems that are leaving dying people and their family carers without the support they need. We only have one chance to get it right for someone at the end of life.

This article was sponsored by Marie Curie.